Matthias

Hell Yeah! Oh Crap!

2012-02-26T18:42:00.000-08:00

Last summer Craig and I watched a show called Expedition Impossible. It was an Amazing Race-ish show with contestants racing through crazy terrain and obstacles for some wonderful prize. The reason we watched it was they had a blind contestant, Erik Weihenmayer, so we wanted to see how he did. It was pretty amazing to watch. This guy lost his vision in his early teens, became a teacher, and is now a mountain climber. Yeah. You read that right. This guy has climbed peaks all over the world, including Mount Everest. His biography, Touch the Top of the World, is a great read, and I've also seen a documentary, Blindsight, which follows him and his team as they lead several blind teenagers in Tibet on a climb. Both worth checking out if you are looking for some inspiration in your life. Anyway, Expedition Impossible...there was one episode where the teams had a choice: follow a path down a rocky treacherous hill or jump off a cliff into a lake. His team was just behind the leaders, so his teammates wanted to jump to save time. He was, naturally, terrified. My heart raced for him, wondering what it must be like to jump off a cliff totally blind. I teared up when he jumped with his friend and teammate, Jeff. I can't imagine how much Erik would need to trust his friend to follow his lead off a cliff, and I hoped with all of my heart Matthias will find a friendship like that someday.

That episode of Expedition Impossible came to mind yesterday. Matthias has been in swim lessons at a local swim center for over two years, and he had a make-up lesson yesterday after missing one earlier in the month. He has always been with other sighted kids his age, and he is, more or less, keeping up with them. There are two things he struggles with the most: reaching his arms in a freestyle motion and jumping off the wall. He's making progress with his arms, but we have struggled to get him to understand what he's supposed to do and be willing to jump off the wall into the pool. Both problems make sense. Most of Matthias' world is accessed through his hands, so he has trouble using them functionally. And asking him to jump off the wall into water is asking an enormous favor. There's no way to show him what you're asking him to do, so he needs to have complete trust that it'll be OK. And he doesn't really know what to expect after he jumps.

In order to work on the jumps, Craig and I have been working on getting him to jump forward. There is a park with a covered bridge near our house, and we went there last weekend for a walk on a nice day. As we were coming to the far side of the bridge, I asked him if he wanted to jump off, of course making it sound like a very naughty thing to do (he's three...he only does things he's not supposed to do). He smiled his impish little grin and almost whispered "YEAH!" as if he were afraid if he said it out loud I would say no. We reached the edge of the bridge, stepped off the wooden slat to the cement to show him where he was jumping, felt both the cement and wooden board with our hands, then stood up and......he jumped straight up and down a bunch of times with a giant grin on his face. Damn. We had motivation; now we needed him to understand the concept. I had a thought. I put his feet on top of mine and jumped forward. Enlightenment crossed his face after about the third time I jumped with him on my feet. "Want to try it by yourself?" I asked. He said yes, and we stood side by side on the wooden board, held hands, and jumped. Holy crap; he did it! He was as surprised as I was and almost lost his balance, but he kept it together. And he was hooked! I have no idea how many times we jumped from the bridge to the sidewalk and the sidewalk to the bridge (before you call CPS, we're talking no difference in height...he was actually only jumping about 8 inches forward, but HE WAS JUMPING FORWARD...something he had never done). We practiced this skill all week, and I thought maybe if I could work him up to jumping off the bottom stair at home we could get him to jump off the wall at swim lessons. Hmmmm.....

Thinking of him jumping off the wall all week, I remembered a story a fellow parent of a blind son told me a few years ago. His kid was older, about 8 or 9, and they moved to a new house. The kid thought he was jumping from the pool deck into the water, but instead he jumped from the back deck onto the pool deck breaking both legs. I thought it would probably be good practice to get Matthias to start dipping his toe in the water before jumping. I figured this would be a good safety practice, but it also might reassure him for now he is jumping into water.

Yesterday as he was walking into class, I told his teacher my idea. Her face immediately brightened. She's worked so hard on helping him jump into the water, and I think she was happy to have a new idea. This was just a make-up lesson for one he had missed earlier in the month, so she wasn't teaching him that day. She said she would tell his teacher for the day and try it again at our usual swim time on Wednesday. When it came time for him to jump, his regular teacher joined his make-up teacher by the side of the pool to tell her what we wanted to try. His teacher took his hand and gently guided his foot down to the water. He lost his balance and plopped down to his butt on the wall, cackling loudly as he did. She helped him to stand back up, and he crept forward, using his toes to find the edge of the wall. She let go of his hands and he lept into the pool in a cross between a belly flop and a cannonball. Everyone who knows him in the room froze with our jaws hanging open for just a second then erupted into cheering. Matthias surfaced with a huge smile and hauled himself back up onto the wall. After his classmates all had their turns jumping, he hopped up and jumped in again. Awesome.

My first reaction was absolute elation. I don't think there is anything better than watching your kid achieve a great accomplishment. And it was made perfect by the fact that Craig and I were both there, along with his regular teacher and a few who have worked with him in the past. A couple of hours later, the oh crap hit. It was not necessarily a devastating "oh crap" just a moment of realization. Matthias is tenacious and fearless. My "oh crap" moment was realizing that we are nurturing two little people who are always going to attack this world with a vigor that, if we're being honest, scares me a little. Tenacity is a quality I want in my kids. It will get them through tough times, and it will help them live full lives. I just hope when they jump out of that airplane in 20 years or so they call me once they've landed safely on the ground.

International Childhood Cancer Day?

2012-02-15T19:07:00.000-08:00

Today, February 15, 2012, is International Childhood Cancer Day. I'm not really sure what that means, but it seems like a good day to revisit the whole shaving my head for St. Baldrick's Foundation thing. So far I've raised just shy of $2000, and I am humbled by that. I have been surprised and excited about the people donating as well as the amounts they have donated. I've also been humbled by the support people are giving me. Craig and I didn't realize it at the time, but we really didn't talk about what we were going through with Matthias. We weren't trying to hide it, but we've realized that we weren't very forthcoming with information, either. Since I have started to tell our tale, we have heard incredibly kind words from the people around us. This whole St. Baldrick's process is quickly becoming an interesting journey.

I had an acquaintance come to me recently and tell me a friend of hers was just diagnosed with terminal cancer. She told me, until that day, she never really paid attention to cancer. She hadn't understood why it was so awful, and she felt bad she had largely ignored the issue. I told her she shouldn't feel bad; I completely didn't understand cancer before Matthias was diagnosed. I never participated in any fundraisers for it or anything like that. I'm sure I dropped some money in a jar if I saw one, but I wasn't in any way involved. How can you understand what people are going through when you have no direct involvement in it? Sometimes people say "You just don't understand" as an insult, but that's kind of strange. There are lots of complex issues you can't truly "understand" unless you've directly faced them. You can, however, try to learn about these issues and have compassion for the people facing tough situations. It falls to those who have gone through these situations to share their stories in an effort to make everyone else aware of what is going on.

I don't know a whole lot about cancer, but here's a Cliff's Notes version of why I think it sucks.

Diagnosis sucks. The problem with diagnosing cancer is it is really hard to do. Cancer often doesn't present any particularly noticeable symptoms until there is a large problem. That's why so many cancer organizations stress the importance of preventative exams. If you wait until you are really sick, your chances of successful treatment are much less than if the cancer is detected early. Matthias' retinoblastoma (Rb) was, more or less, accidentally diagnosed, and that is the norm. Pediatricians don't do the type of exam needed to detect this cancer, and it is often misdiagnosed or missed completely.

Treatment sucks. People always associate chemotherapy with hair loss, but hair loss is one of the kinder side effects. It is the most outwardly apparent, which is, I'm sure, why so many people are aware of it. But think about it...if your hair is falling out at a rapid rate, there is something wrong with your body. Basically, chemo is poison that hopefully kills the tumors before it kills you. One other really common side effect is a weakened immune system. That means you are not only more susceptible to infection and disease, but you are unable to adequately fight disease and infection when you are exposed to it. So that sucks, especially considering being on chemo during cold and flu season, right? Now imagine having a kid on chemo, much less a baby. Kids are always bringing home some sort of bug, and babies put everything in their mouths. Chemo and kids is a nightmare mix. In Matthias' case, he remained immunocompromised for a full year after after treatment was over. Since he had been a baby at the time of diagnosis, he could not get any of the recommended vaccinations for babies. So the entire time he was on chemo, he was at risk for all of those devastating illnesses as well as all of the other crap flying around. That also happened to be the year H1N1 was running rampant through our community. We not only lived in fear of cancer spreading to his brain, but we were equally terrified he would get sick and be unable to fight it. And that's just the basics of chemo. That's what pretty much everyone goes through. When Matthias started his first round of chemo, we had to read and sign contracts listing the possible side effects for each drug. Hair loss and a compromised immune system were common for each, but there were several columns of possible devastating side effects. One of the drugs even had a chance of causing leukemia. Matthais will be at the highest risk for developing leukemia from that drug between the ages of 6-8.

And that's just chemo. We never did radiation, so I can't really speak to that. I can tell you, after meeting with a radiation oncologist, we were more comfortable with surgery than radiation.

Then there's the fear. One of the longest lasting unexpected side effects of cancer is fear of having it again. I don't know if every patient experiences this, but I'm guessing most do. The thing is, most cancer survivors are at some sort of risk for developing cancer again. I never realized that. I knew some people went into remission, where the tumors weren't gone but weren't growing either. I knew that was scary, but I didn't know that even people who theoretically have all of the cancer removed are still at risk. In Matthias' case, more Rb patients die of other cancers than of Rb itself. Sometimes the treatments cause cancer down the road. Sometimes the cancer spread and the patient didn't know right away. Matthias has the genetic form of Rb, so he is sort of predisposed to cancer. As I stated, one of his chemo drugs also has a side effect of causing leukemia. We are always aware of the possibility that Matthias will have cancer again. In fact, statistically he will die of cancer someday. We just hope it is in 40-50 years instead of 4.

So why am I on about why cancer sucks? Well, this is a taste of how I feel about cancer. There is tons of scientific literature on why cancer sucks if you are interested. This is why people are always having walks, awareness events, fundraisers, etc. This is why I would shave my head to raise money for childhood cancer research. We need better diagnostic processes. We need better treatments. We need to fund research in order to achieve this.

St. Baldrick's

Opthalmology Revisited

2012-02-13T18:35:00.000-08:00

Once every year we have an appointment with the pediatric opthalmologist who treated Matthias' retinoblastoma and eventually performed the surgery to remove his eyes, Dr. Neely. Last Thursday was that day. He checks the implant and tissue in the socket to make sure it's healthy. There is a very small chance something could go wrong with the tissue or the implant, so he's just looking for signs of trouble. Compared to our other doctor appointments, this one is super easy, enjoyable even. All of our appointments with Neely are a bit like hanging with an old friend for about 15 minutes.

The first time I met Dr. Neely, he thought I had shaken my 3 month old baby. So it's safe to say we got off to a rocky start. As soon as we cleared up that mess, he became one of our favorite people. He's really tall, easily over 6 feet, athletic build, with curly brown hair and an olive complexion. He's somewhere around forty, and honestly a pretty good looking guy (Craig once confessed to me he thought Neely was one of the best looking dudes he's met). Having said that, he's also a stuffy medical specialist with an exterior that is a bit tough to crack.

Throughout the course of Matthias' treatment, we appreciated Neely's balance of honesty and compassion. Specialist doctors are not particularly known for being great listeners who are open to suggestion, but Matthias' treatment was always a conversation. I have never felt like he was itching to leave the room or had something better to do. The night Matthias was diagnosed he gave us his personal cell phone number and answered it every time I called. He has always patiently addressed the multitude of questions my ADD brain can produce in a conversation about my son, and when we disagreed on whether to do radiation or not, he listened to our concerns with an open mind. I appreciated that. He also responds well to our dark sense of humor.

The day of Matthias' second surgery, I made cookies for the nursing staff. They had been so kind to us on this terrible journey; I wanted to do something to return the favor. I set aside a packet of six cookies for Dr. Neely and gave them to him privately, saying that day should be a celebration of an end to cancer. We would deal with blindness later. Anyway, the next day we went to his office to have the bandages removed. The Doc complimented me on the cookies, saying he ate three and let his three kids fight over the remaining two. "Shame on you, Dr. Neely," I said. "There were six cookies. You ate four and made your kids fight over the last two." We all laughed. The day after my son's second major surgery in two weeks which left him disabled, we were laughing in this man's office. Our ocularist (the lady who makes Matthias' prosthetic eyes) once asked me with a mischievous twinkle in her eye what Dr. Neely thinks of us. I told her I don't know, but I have to confess it would be interesting to find out.

On this visit, we waited about an hour for the man, but the kids were pretty well behaved given such a long wait. Neely sauntered into the room with an easy smile and shook our hands. He sat next to Matthias and chatted with him for a few minutes about nothing particularly significant. We might as well have been sitting at a restaurant having a casual dinner or something. After several minutes, our conversation turned mildly medical. No. We haven't had any problems. Matthias' eyes tend to get a bit gunky when he has a cold, so I asked why, physiologically, that is. Turns out the friction caused by the prosthetic rubbing against the tissue holding in the implant causes a build up of gunk, especially when he has a cold.

Then it came time to pull out the prosthetics. Neely gently asked how he does with it.
"Oh Lord. He's fine," I said. "He'll take them out for you, if you like."
"Do you have a suction cup, or do you need one?" Neely asked. You use these little suction cups to pull out the eyes. It doesn't hurt him; he actually kind of likes taking them out.
"Nah. I need one," I said.
"Don't you have one in your purse?" asked Craig.
"No. I generally don't take his eyes out in public, Dear," I replied with mild sarcasm and a little bit of Chicago sneaking out. Craig rolled his eyes and chuckled at me.

"Let's lay down, Buddy," said Neely.
"That won't be necessary, unless you need him to," I replied.
He shook his head with an curious grin on his face. A nurse brought in the suction cup, and I affixed it to one of Matthias' eyes. Matthias reached up and rather unceremoniously yanked it out, evoking an amused chuckle from Herr Doctor. We repeated the process, and Neely commenced to checking out the sockets. Matthias wasn't happy about the exam, but he didn't really fight either.
"I do have one other concern, Doctor," I said. "Ever since the surgery, he keeps bumping into things. I'm afraid he can't see."
"Wait a minute, here! Let's check this out." Neely grabbed his pen light again and looked into the sockets. "Well. That does sometimes happen. Remove the eyes, and sometimes they can't see afterwards." Did I mention I love a doctor who can appreciate dark humor?

We wrapped up our appointment with Neely saying he wants to continue seeing Matthias once a year to make sure all is well. I think he just likes our company, personally. Who wouldn't?

What does that kid do in school?

2012-02-05T18:13:00.000-08:00

Matthias attends a preschool program through our school district which is specifically designed for kids exhibiting any sort of delay. The goal is to get as many of the kids on track for kindergarten as possible. He is the only visually impaired/blind child in the room, and he is the first blind kid his teacher has had in 25 years of teaching. He has a TVI (teacher of the visually impaired) who sees him every day and helps adapt the materials to his needs. What does this all mean? What does he do in school? We weren't really sure at first, but we are starting to get a better idea.

At circle time they talk about the calendar.
Matthias' TVI created this Braille calendar
with raised lines for him to follow along.

The most basic answer to the question of what does he do is...he does whatever everyone else is doing. He goes to the playground, does art projects, gets his turn as line leader, plays with peers, and so on. He participates in circle time, where they play games, sing songs, talk about the days of the week and months of the year, learn about weather, etc. The teacher and her aides have learned to describe visual elements of classroom activities to Matthias to keep him involved and engaged. For instance, I was present for circle time where they were playing a sort of matching game. Each kid was given a card with a picture on it and was asked what was on the card. The teacher simply told Matthias what was on his card; he had a picture of a crib. The aide then drew another card with a picture on it, and the kids had to tell her if their picture was a match. For instance, a kid might have a picture of a dog and the teacher would draw a picture of a leash. The kid would need to make the connection a dog uses a leash and tell the teacher theirs is the match. About the third round the teacher drew a picture of a baby. Matthias spoke up saying babies sleep in cribs, so he got to take the teacher's card. The only adaptation necessary in this case was a basic verbal description.

Raised line coloring project.

Occasionally he might do something different from the other kids. For instance, he might use his Braille writer while the rest of the class is coloring, or he may have the same coloring assignment as everyone else with a drawing with raised edges. He will learn Braille, so he is currently working on skills to help him do that. These include recognizing and matching textures, finger strengthening, shape recognition and matching, patterns, etc. To my knowledge, they are not focusing on individual letters yet, but I would bet that will begin soon.

Raised line shape matching and gluing.

Braille shape matching and coloring.

Follow along. Raised paint dots and
a crayon.

Follow along, raised lines and crayon.

Matthias "scribbling" with a
Braille writer.

Braille project from school.

Matthias is doing very well in school, holding his own with sighted peers and excelling at skills he will need as a blind student. Above are some examples of projects sent home from school this month.

Two Words...Matthias Sledding

2012-01-21T18:13:00.000-08:00

We endeavor on a regular basis to get Matthias out to do normal things. Or, more accurately, we drag his little whining, complaining butt out into the world and force him to learn how to have fun. He doesn't like snow, never has. I suppose he takes after his mother in that respect. He doesn't like to be cold, and I think he gets easily confused in the snow since all of the terrain becomes the same. He complains every single time we go out in it, but we always make him, hoping one day he will learn to like it.

We had a little bit of snow overnight, so Magnus was super excited to get out into it. Craig and I, seeing the temperature outside, were leisurely sipping our nice warm coffee in our nice warm pajamas late in the morning when our friendly neighbors knocked on the door. Our neighbors have two boys close in age to ours. Magnus zipped around the house getting ready to go out, and Craig and I dragged our lazy butts upstairs to get dressed. Magnus was ready in record time and begging Craig to hurry up while I was still dragging my sweet little mule up the stairs to get dressed. He heard "outside" and "snow" and immediately dug his heels into the ground attempting to refuse me.

I managed to get Matthias dressed and ready to go out into the world, and he pouted a bit as I shoved him out the door. He used his usual avoidance tactic of swinging instead of playing in the snow for a little while, but he eventually heard the words "sled" and "fun" and became curious. My neighbor had brought out an old school sled, and the two older boys were having a blast with it. I plopped Matthias atop the sled, and Magnus dragged him around the yard for a while. Both kids loved it.

Next, Magnus wanted to sled down our neighbor's hill, which is more significant than ours. I pulled a giggling Matthias around the fence and over to their yard, where I situated him at the top of a perfect little hill for a first time preschool aged sledder. Magnus, of course, insisted he be able to push Matthias over the edge. I went to the bottom of the hill to catch Matthias and held my breath, wondering if this was about to end badly. Magnus gave him a little shove, and Matthias had a curious smile on his face as he started to gain momentum. He slid slowly down the hill, picking up a little speed as he did. whooooOoOoOoOOOOOOAHHHHH!!! It started out barely audible but grew until he was shouting excitedly as he descended the little hill. I stopped him when he reached the bottom and looked into his little beaming face. "AGAIN!" he proudly proclaimed. He went only once more, but he's been talking about sledding all afternoon. It was absolutely hilarious, and I look forward to the next snowfall so we can try it again.

We now return you to your regularly scheduled programming...

2012-01-19T18:21:00.000-08:00

I'm going to take a break for a minute from attempting to raise money for St. Baldrick's and remember why I started this blog in the first place...raising a blind kid. I have a couple of brief, albeit not so exciting, updates.

First of all, how is the blind kid doing in school? We recently received a progress report, of sorts, from Matthias' teachers. Matthias is doing exceptionally well in every way. Occupational therapy reports an increased level of participation and general cooperation. With this improvement, he's showing greater fine motor control and finger strength. In class, he gets around independently and participates in all of the classroom activities. He is starting to move faster with prompting from teachers. His TVI (teacher of the visually impaired) reports she thinks the world of Matthias and is amazed at how well he is doing. He is easily recognizing textures and patterns, critical skills for young ones needing Braille. All in all, Matthias received glowing reports from all of his educators.

As a side note, Magnus is in his third year of preschool and also doing phenomenally well. He is an October baby, so he didn't make the cut for kindergarten this year. Both of his teachers report noticing a unique intelligence in him. For example, he has been obsessed with this marble maze contraption at school...tubes that click together to make interesting contraptions for marbles to go down. Both teachers say he is very purposeful in his designs, indicating an understanding of three dimensional construction, which is rare for a five year old. It's funny. I remember when he was 18 months to about two years old we went to Gymboree for class. His teacher there also indicated she thought Magnus had an interesting thought process. He always seemed to find his own way of problem solving, finding a way to complete the task at hand but in ways slightly different from his peers. He is also doing well on reading an writing and all of the normal preschool stuff. Now if I can get him to stop fighting with the other "strong willed" boys in his class...

Anyway, both kids are doing exceptionally well in school. Now how about that lump behind Matthias' ear I mentioned before Christmas? Over Winter Break, the lump grew a very little bit to about 2-3 millimeters across, thereby setting off all kinds of alarms with Craig and me. I emailed our nurse practitioner, but I have not heard back yet. I'm relatively certain my email was lost in the holiday shuffle. I haven't emailed her again, because after the first of the year, the lump appeared to shrink again. Today, it is still there but seems to be smaller. I will be emailing our nurse practitioner again soon, but I think it is going to be OK.

The Road to Surgery

2012-01-12T17:11:00.000-08:00

Please read "You're Gonna Do What???" first.

I've occasionally mentioned how awful the enucleation surgery was, but I am purposely nonspecific about it. I don't like to talk about it. I don't want to write about it. But that's why I've decided to do just that. It is a memory that weighs heavily on my heart, and I think writing might help. I also think it is time to document our experience.

Our journey to surgery more or less began in January 2009. Matthias had been through 2 rounds of chemo, and our opthalmologist recommended we have an informational meeting with a radiation oncologist. He insisted it was just to gather information and to begin processing insurance claims. Proton radiation therapy is still considered experimental, and it is often denied by insurance. It also costs around $150,000, so insurance will fight it. Submitting our claim early would mean that we could fight and appeal before we actually needed treatment, thereby minimizing any risk of delay should Matthias need radiation.

We went to the meeting and met a shockingly young but extremely kind and competent physician. He informed us that proton radiation was much less risky than traditional radiation, cutting the risk of secondary malignancy in half over traditional radiation therapies. He said it would be every day for 5 weeks in Bloomington, IN, and it would make Matthias progressively sicker and sicker over the course of treatment. He said the side effects are mostly like ones common for chemo patients, nausea and vomiting as well as a compromised immune system. In addition to that, he would get a "sunburn" like irritation around his eyes which would get worse and worse. He would need to be anesthetized every day for the entire 5 weeks, which may also make him ill. His skull would be permanently deformed, as the skull around the eye sockets would stop growing (although skull deformation is also a consequence of enucleation). The treatment has had about a 75% success rate over the last 20 years, with about a 25% risk of secondary malignancy (higher if the patient was under 1). Since this therapy is still a young science, these numbers are largely theoretical. There have not been enough studies to state definitive statistics.

We left the meeting very upset, hoping we would never need that nice doctor's services. We were also confused because this radiation oncologist spoke as if radiation were an inevitability instead of a possibility, as the opthalmologist had indicated. I remained heavy-hearted until I realized that we were not required to do radiation. I can't explain why, but it was like I immediately felt better. Craig had been quiet, so I asked him, "I know we don't need radiation yet, but I don't think I want to do it if we come to that. I think if (the opthalmologist) recommends radiation, we should enucleate." I waited for an argument, but Craig was quiet for a moment. He said, "I was thinking the same thing." How is that possible? I couldn't believe he agreed with me, but I was so glad. Upon further discussion, we concluded that since Matthias's vision was already severely damaged beyond repair, we were not willing to put his overall health at further risk in order to save what little vision he had. We tried to remain optimistic over the rest of Matthias's chemo treatments, but I think we knew that eventually Matthias was going to lose his eyes.

Each month Matthias had to go to the hospital for chemo and an EUA (Exam Under Anesthesia). Since he was a baby, they could not mix his chemo dose until we got there. So we would go in on a Monday, wait a couple of hours for the pharmacy to mix the chemo based on his height and weight, then wait a few more hours while the nurses slowly delivered his medicine. It was usually about 9 AM -3PM. The next day, we would go in pretty early (the times varied, but they usually tried to get us in first thing) for his EUA. He was unable to eat before his EUA (just like any surgery) so they always tried to get babies in first. We would go to outpatient surgery, and Matthias would be prepped for his procedure. This usually involved never-ending questions from nurses (and inevitably a quirky and terrified resident), vitals, and an unstoppable parade of eye drops, which we all hated. Matthias would scream, Craig and I would hold back tears, and the nurse administering them would apologize repeatedly. Then the surgical nurse would come for him. It is a horrible feeling handing your baby to a nurse in scrubs, no matter what the reason. Every month except one his EUA included some sort of laser or cryo treatment to kill various rogue tumors, which left his eyes red, swollen, and blistered. When he was awake and recovered from his EUA, we would take him upstairs for a second day of chemo. We did this once a month for six months.

Matthias tolerated chemo well; he didn't get too terribly sick. He was usually just tired and cranky during chemo week. Once a week for the rest of the month we had a pediatric nurse come to our home to take a blood sample and check his blood counts. They were mostly making sure he wasn't getting too anemic or immunocompromised. We had a few months where his blood count dipped down to a concerning but not devastating level. It just meant we needed to practice good hand washing and not take him out in public too much. He never had a significant problem with anemia or anything else. He never even lost his hair.

In May 2009, the chemo was no longer working. For months it had appeared that chemo was killing the tumors. The main tumors in each eye had shrunken and appeared dead, and occasional little seed tumors in the vitreous liquid of the eyes had been easily managed by cryotherapy and laser treatment. However, at our May EUA, Matthias had about 8 seed tumors in each eye, and the left main tumor appeared to be growing again. The opthalmologist said it was time to do radiation. So it came to this...Our only choices were radiation, an aggressive and harmful but effective treatment, or debilitating surgery. How in the hell do you make that choice? Talking about it months previously was one thing, but making the decision was impossible. Craig and I asked to be alone, discussed it briefly, and decided that despite our emotions we knew enucleation was the best course of action in Matthias' particular case. We informed the opthalmologist of our decision to forego radiation and proceed with enucleation. He disagreed, saying if it were his child he would do the radiation. We explained our reasoning, saying we didn't think Matthias had much vision at all, and asked him to refute our logic. We were open to a discussion, but that discussion would need to include information about how our decision was fallible. Matthias responded only to light and dark, but nothing else. He never reacted to anything else visual. The doctor did a quick impromptu vision test, with Matthias again responding to nothing, not even a light on his favorite toy. He asked us to think about it over the course of the next month. He said he did not see any immediate need to act, and he wanted us to be sure of our decision. He also wanted to make sure the final chemo dose had a chance to work.

We spent the next month researching our decision, making sure we had no doubts about our intentions. We called the radiation oncologist again to reaffirm the risks and benefits of radiation. We also spoke with our contact at the Indiana School for the Blind and Visually Impaired. We wanted to know the difference in terms of lifestyle and overall need for assistance Matthias would face with his current vision versus no vision at all. We had lengthy conversations with both, and we confirmed our previous suspicions. It would be nice if we could keep the vision Matthias had, but we were not willing to further risk his life or health for it. He already needed Braille and assistance with mobility, and most of the things a totally blind person needs. The tumors completely obscured the macula, the part of the eye that governs most of your vision. If he had any vision in tact, it was a portion of his peripheral vision. I don't know if our decision would have been different if Matthias had had good vision; that simply was not the situation we were facing. Honestly, neither road was easier or more desirable. We just needed to pick the one that we could handle as a family. We knew we could raise a blind child, but we didn't have it in us to fight cancer anymore.

We had one more problem to solve before our next appointment, Magnus. He certainly could not accompany us to the hospital for a likely rough and emotional day. We needed help. Each time we had chemo, we invited various family members (mostly grandparents) to come and care for Magnus while we dealt with Matthias. It made the week fun for Magnus, gave me someone to talk to (and process my feelings with) when Craig had to go to work, and gave us an extra set of adult hands to help. My Father is a teacher who had never taken a day off and had accumulated over 100 days of vacation over the course of his career. He came out more than once to help us and had always kept the mood light during the weeks he was with us. Craig and I discussed it at length and then asked him to come for Matthias's potential surgery in June. It was a hard question to ask. We didn't entirely understand the gravity of the favor we were asking, but we knew it would be an incredibly difficult time. He agreed, and my Mother offered to come should we need a second surgery.

We walked into Riley Hospital for Children in June with, I believe, every piece of information we needed to make a decision and my Dad at home playing with the Mag. We were prepared to make our decision, but we were not at all prepared for the reality of the next 24 hours.

Surgery

2012-01-11T19:43:00.000-08:00

(Read "The Road to Surgery First)

The nurses prepped Matthias for his standard EUA, giving him calming drugs and a crap load of eye drops. The opthalmologist came in to speak with us, and we discussed our decision again. He confessed that, while he may not agree with our decision, he understood it 100%. He was ready to support our decision, but he wanted to examine Matthias first to make sure a decision was necessary. He had us sign a consent form allowing him to remove Matthias's eyes should he find more tumors, and we signed it. He left the room and said he would be back to speak with us before taking any action.

A nurse came and took Matthias, and Craig and I gently kissed his little eyes and said "I'm sorry," before we handed him over. We sat and waited in relative silence. It wasn't long before the doctor came back and sat down. I hate when doctors sit down. He informed us that both main tumors were growing again, and the seed tumors were too numerous to count. It was time to remove his eyes, and we needed to decide whether to remove one or both that day. Honestly, how many impossible decisions can a couple of parents make in such a short time? After a lengthy discussion and lots of crying, we decided to remove one at a time. The doctor said he saw no immediate risk, and he had never removed two eyes in one day. We were concerned the trauma would be too much on a little one, and we weren't interested in making history in our physician's OR. He somberly retreated to remove the left eye, which at that point was much worse.

We sat crying, not talking. Several of the nurses we had come to know well came in to give us hugs and words of encouragement. It was quiet. I had known this day was coming all along, but knowing something and facing it directly are two different things.

I don't remember how long it was, but I remember it was not as long as I expected before our doctor returned. He said surgery went well. Matthias had been administered a strong dose of Morphine and was in recovery. Christ. They gave my 10 month old Morphine. He told us, almost apologetically, that he now believed we were correct to skip radiation; Matthias's tumors were some of the worst he had seen. He told us we would need to return the next day for bandage removal and in two weeks for the second surgery. Christ. We were going to need to do this again. He left quietly.

It was 20 minutes or so before the recovery nurse came in. She said that Matthias was starting to stir, and they wanted to get us back there to help comfort him. She gave us our care instructions and described what we would see when we walked back and then led us to his bed.

Matthias was lying in a hospital bed, shirtless, leads attached to his little chest, wires and tubes everywhere, warm blankets over him, with a bandage the size of a baseball taped to his left eye. I took his hand and started whispering to him that it would be OK. The nurse helped us navigate him through the tangled web of wires to get him out of the bed and seated Matthias and me in a rocking chair. We rocked for a rather long time; as he slowly woke up the nurses started to remove all of his connections. We got his pajamas back on him and were released to take him home that afternoon. You read that correctly. Enucleation is an outpatient surgery. He was very groggy from all of the medications, so he didn't fuss too much. He mostly seemed to want to be held.

We carried him to the car and strapped him in the car seat. He was pretty heavily sedated still, not really awake or asleep. Every once in a while, he would reach up and rub his bandage. We decided I would ride in back with him to make sure he didn't knock the bandage off in transit.

We had communicated the events of the day by phone with our family, so my Father was ready for us to come home post-surgery. We arrived home, and Matthias was still out of it. We handed him to my Dad and took Magnus for a walk. It was one of the most difficult moments for me. I didn't want to leave him, but he was resting somewhat comfortably. Magnus, only two at the time, didn't know and couldn't possibly understand what we'd been through that day. He just knew Matthias had Mommy and Daddy instead of him. We took Magnus out for a little while and tried to have fun with him. We returned to find Matthias starting to wake up.

As soon as Matthias came to, he started rubbing at the bandage. It became apparent we would need to watch him and keep him away from it. It was a constant fight with him to keep his hands off of it, and everyone got a little upset about it. We decided that his morphine was probably wearing off, and we had been given Tylenol with codeine for pain. We read our dosage instructions and prepared to give him a dose. We first tried to mix it with some warm milk (his favorite at the time), but he wouldn't take it. We then laid him down on the couch and dribbled some in his mouth, hoping we could just administer it slowly. We had to hold him down because he was struggling against us and trying, again, to get at the damn bandage. As soon as that stuff hit his tongue, he vomited straight in the air. I've never seen anything like it. He was like an erupting volcano. It went straight up and all over his face, including all over the bandage. He retched several times, and there was nothing we could do to stop it. We just sat him up and let it happen. When he was finished, I scooped him up to go change him and clean him up. Craig stepped outside to compose himself before returning to help.

I took him up to his nursery and began to clean him up. He heaved again. My Father was at the door muttering something along the lines of "My God." I waited for him to finish and started to clean him up again. After I cleaned his face, I noticed that some had gotten under the bandage. My stomach turned a little, and I asked Craig to call the nurse to find out what to do. We couldn't get him the pain medication and what the hell were we supposed to do about the vomit under the bandage? The nurse advised us that if we could get Matthias to take straight Tylenol, it might be enough for him. And she assured us not to worry about the bandage. There were two levels of protection, and it was highly unlikely the vomit penetrated the wound. She encouraged us to check and see how far it had gotten, but she said she doubted it could get past the main bandage. Check under the bandage. I really really didn't want to check under the bandage. I collected myself and carefully peeled back the outer layer of bandage. She was correct; it had not gotten far enough to penetrate the second layer. We finally managed to get him into some clean pajamas, and we headed downstairs to prepare a strategy for getting through the night.

We decided that one adult would need to be up with Matthias all night, and we would take turns. I took the first shift, Craig the second, and my Dad asked to be woken up first thing in the morning to take the final shift. When it was time for bed, I settled in on the couch with Matthias in my arms snuggling under a blanket. I was up watching a movie for a while, but I eventually nodded off with my arms wrapped tightly around his. I figured if he struggled to get at the bandage, it would wake me up. I dozed on and off for several hours, and when my shift was over I crept upstairs to wake Craig and hand over Matthias. Another difficult moment for me. As desperate as I was for sleep, I didn't want to let Matthias go.

When I awoke the following morning, everyone was pretty tired and solemn. It had been an intense day, a long night, and we now needed to prepare for the doctor to remove the bandage in a few hours. We each ate a little breakfast, and Craig and I got ready to take Matthias to the doctor's office. Matthias was fussy, but he was a little better than he had been the night before. The Tylenol seemed to be working fine, but he was constantly digging at the bandage. He managed to keep down some food before we left.

We walked into the office, and we didn't wait long before a nurse escorted us to an exam room. Our opthalmologist came in to remove the bandage. He had me sit in the exam chair with Matthias facing him and hold his arms down. Have I ever mentioned the number of times I have held this kid down so someone could perform some sort of traumatic medical procedure on him? It is hard every single time, but I insist it is me and not a stranger. I figure a traumatized kid needs his Mommy. Anyway, the doctor removed the bandage, and as soon as it came off Matthias screamed louder than I have ever heard him scream. It vibrated my ear drums and pierced my heart. He cried, and I shooshed him and whispered in his ear that he would be OK. As soon as the doctor finished cleaning him up, which was only a matter of moments, Matthias stopped crying and smiled. Matthias was still facing away from me, so I looked at Craig, who just cocked his head and said "Huh." I looked down at my baby, and he lolled his head over to the side and faced me. His eyelid was open to reveal a blood red shiny blank eye. My heart stopped for just a second, and I said, "Oh...well there you have it. His eye's gone." The funny part was Matthias had this huge grin on his face, like "Look Mama, no eye!" He was much happier after that, and that made it easier for us as well.

We went home, and the first thing Matthias wanted to do was jump in one of those bouncer things. I put him in, and he started jumping like nothing had happened. He was fine. After quite a while, he started to get sleepy, so I took him out of the jumper. He cried in protest, and I looked down at my pants to find a reddish stain. What the hell? I looked up and froze. Matthias had bloody tears. Not like True Blood bloody tears, but his tears each had a trace of blood in them. I was done. I looked at Craig and said, "He just cried bloody tears on me. Can you please take him. I need a minute." That was my breaking point. I still carry the weight that moment had on me, and I think a small part of my heart died right then. The heaviness magnified when I realized we were going to need to do this again in just two weeks. I changed my clothes and hid in my bedroom for about 10 minutes before returning downstairs.

When I came downstairs, it was one of the darkest moods I've ever known. Magnus stumbled up to me rubbing his eye and said, "I have a ladybug in my eye, Mama." Thank goodness for Magnus. A small part of that dark blanket covering my heart lifted for a moment. This little 2 year old had made sense of his brother's missing eye by thinking there was a ladybug in it. I hugged Magnus and thanked him. He gave me a strange look and then smiled.

Matthias recovered quicker than I can say. It was incredible. The day after the bandage was removed, he was outside playing with his toys on a blanket. He recovered so much quicker than we did. He seemed absolutely fine within 48 hours of having his eye removed.

My Father, Craig, and I all needed some time to recover. My Dad will, to this day, confess that being with us for Matthias' surgery was life altering. Craig and I talked and cried and laughed and prepared to do it all again.

Originally, my Mother was supposed to come for the second surgery, but in a matter of months she had lost her Father and been laid off from her job. She was dealing with several heavy issues, and we now knew our situation better. I called her and told her she really didn't want to add this on top of it; it would be too much. My Mother has a huge heart and a really hard time admitting her limitations, so I knew it was difficult for her to listen to what we were saying. I tried to explain as gently as possible that the surgery had been more intense than we could have imagined, and I didn't think she should add that stress onto her shoulders. She reluctantly agreed to bow out of the second surgery.

Then we needed to figure out who to bring in for that week. Craig and I both agreed that my Dad would be the best man for the job, but we were incredibly reluctant to ask him to do it again. Something changed in my Father after he witnessed Matthias' surgery...not in a bad way, but I knew, like us, he was still processing what had to be one of the most intense events he's ever witnessed. We were dreading the second surgery; I couldn't imagine asking him to do it again with us. After much debate, Craig and I agreed that my Dad was an adult, and he should be the one to decide if he could handle it or not. I called him, and when I asked he became silent. He said, "I don't want to do it again, but I'll be there." I felt horrible, but I knew he meant what he said. I still feel terrible that he went through this with us twice, but I am also forever grateful.

The second surgery approached with mixed emotions. We were anxious, maybe even excited, to have a cancer free child, but we were nauseated at the thought of going through another major surgery. My Father came into town, and it was obvious he felt the same way. We decided to treat surgery day as a celebration. No matter how upset we were about the surgery, we determined to focus on the good of the day instead of the bad. I even baked a couple of batches of cookies to bring to the hospital the next day for our friends in the outpatient OR who had supported us throughout this whole affair.

We again arrived at the OR early in the morning. Everyone knew why we were there and treated us with compassion and respect. We handed the cookies to a nurse, asking her to put a sign on them saying "Have a cookie if you hate cancer," and she put them at the nurses' station.

Ironically, we were put in the same prep room we had the very first time we entered the OR. It added a strange finality to the day as we had come completely full circle. The parade of medical professionals commenced, nurses, anesthetists, residents, etc. A resident came in with the consent paperwork for the enucleation. Once he confirmed we were there to remove the right eye, he took a pen and wrote "yes" over Matthias' eye. I had to suppress a sob. It was a very real, brutal moment as this man leaned over to write on my son's head. In his defense, he was following protocol. As quickly as the hurt came, Craig and I saw the humor, too. When the doctor came in, Craig and I couldn't help ourselves. We said, "Just in case there's any confusion about what you're supposed to do today, your resident wrote 'yes' on the kid's head. Don't remove the implant you put in two weeks ago." He laughed, and it eased the tension a little bit. He started to become somber, and we quickly said, "Matthias becomes cancer-free today. Have a cookie." I handed him a packet of cookies I had reserved just for him.

The surgery again went quickly. When the doctor arrived to confirm everything had gone well, a confusing mix of emotions surged through me. I felt a sorrow and exhaustion unlike anything I had ever experienced before. My heart hurt for my son, who had been through a painful journey only to culminate in being robbed of what little vision he had in another painful surgery. I also felt intense relief. I was so happy to end this journey of uncertainty and loss. I took a deep breath and allowed the relief to take over and start to heal my heart. For the first time in his short little life, Matthias was cancer-free. Since his initial diagnosis, I had looked in his eyes every single day, seeing the reflection of the tumors and wondering if they were at that moment spreading to his brain. It was like the sword of Damacles hanging over my son every single moment of his infancy. And that sword was gone. He was finally safe. Although there is a small part of my heart that will never completely heal from this experience, I permitted myself to be happy that our journey with bilateral retinoblastoma was finally over.

We were more prepared the second time for what we would see and experience. We were again led to Matthias' bedside to help him wake up gently and peacefully. We handled the recovery much the same as before, with constant supervision so Matthias couldn't rip off the damned bandage. He dug at it every moment he was awake. We didn't try to administer any codeine; we just stuck with regular doses of Tylenol. He got sick again (this time all over Craig's "Mr. Happy" t-shirt), but he and Craig were thankfully sitting up at the time. We let my Dad take Matthias for a little while so we could show Magnus some attention and love. Magnus still didn't know what was going on, but he seemed as quiet and exhausted as we were.

Taken a few days after
the second surgery.

The next day, we had to go to get the stupid bandage removed. I had a bunch of stickers in my purse, among them some STOP sign stickers. While we were in the exam room, Craig and I each put these stickers above our eyes. When the doctor walked in, we said, "No removing any eyes. Your resident wasn't here, so we took it upon ourselves to make the marks." He said, "Oh damn. I was going to offer you a buy 2 get one free deal on eye removal." I love a doctor with a sense of humor.

Matthias screamed that same terrible scream again when he removed the bandage. Thankfully, this eye wasn't as bruised or swollen as the other had been. I opted not to take any pictures immediately post surgery this time. I just didn't have it in me to pick up a camera.

Matthias swinging at the park
before he had prosthetics.

We took Matthias home, and he was again ready to roll. We noticed over the next few days that he was a bit more skittish than he had been before, but other than that he seemed unaffected by the loss of vision. On the contrary, he seemed as relieved as we were.

My Father returned home as soon as it became apparent his assistance was no longer necessary. We will be forever thankful for his role in Matthias' treatments and surgeries, and we are certainly closer than we ever were before this experience.

Matthias on his first birthday,
eating a lady bug cake.
The Ocularist was still
fitting his prosthetics and
had drawn black circles on
the clear conformers to see if
she had the shape right.

Matthias was given about 6-8 weeks to heal before he began the process of being fitted with prosthetic eyes. I was surprised how quickly I became accustomed to him not having eyes, but it became completely normal to us. Honestly, I think the prosthetics are a little silly, but they keep the rest of the world from staring at him the way they did during the months before he had prosthetics. We once had a rather ill informed woman at Menards try to bless the demons out of him right in the middle of the store, so we are pretty happy we don't deal with that kind of crap anymore.

Our journey was a tough one, but it is slowly fading to a memory. Despite the difficulty of the surgeries, I have never regretted our decision to remove the eyes instead of radiation. To my knowledge, neither has Craig. We go about our business, raising two smart and funny sons, one of which is blind. And we hope with all our hearts we never face cancer again.

Matthias the day he was given his first pair of prosthetic eyes.

You're Gonna Do What?????

2012-01-08T18:21:00.000-08:00

Last year a friend of mine from college shaved her head to raise money for the St. Baldrick's Foundation, an organization that raises money for childhood cancer research. I thought it was fantastic, and I gladly donated to her cause. I also made a little mental note to see about making Matthias one of their honored kids.

Over the past year, I have thought about this organization a few times and decided I wanted to do more than submit Matthias' story. I wanted to be a shavee. I signed up last week, and I will be shaving my head to raise money for childhood cancer research on March 9, 2012.

The reason may seem obvious, but things aren't always what they seem. I am not doing this for Matthias. He's healthy and cancer free. I'm doing it because when Matthias was diagnosed with cancer, our options were chemo (poison), radiation (more poison), or debilitating surgery. It's like offering someone glass shards or staples to eat. Those aren't options. We were grateful to have any choices at all, but we were surprised to find all of the options would hurt Matthias in some way. I truly believe, given the resources, scientists and doctors can find much less volatile and damaging treatments that don't harm little bodies. We need to give families better choices.

I've spent the last several months writing an account of Matthias treatment and surgeries. While extremely cathartic, it was difficult to write, and I struggled with whether or not to publish it. I think it best describes, though, why I would decide to get involved with a charity like this. No Mother or Father should ever need to sit by and watch their child endure cancer or cancer treatments. And the clincher is, as painful as our experience was, our journey was nothing compared to others we know.

If you want to know what it is like for a family facing childhood cancer, please read the blog entries "The Road to Surgery" and "Surgery." If you read them, I hope you will consider donating.

St. Baldrick's

My Dear Sweet $#%^&#* Little Angels

2012-01-02T18:42:00.000-08:00

I spent the last half hour or so writing a short description about how wonderful and inspirational Matthias is (more on that one week from today...stay tuned!), which is evidence that God has a fantastic sense of humor. You see, I've only been a Mother for a little over five years, but I've noticed a trend. After the holidays I get to spend a week reverting two unknown little terrors to the good sweet little boys I'm trying to raise. Today largely consisted of Craig and I working to detox and reprogram the children after two weeks of sweets, junk food, and unlimited access to a bevy of relatives ready to fulfill their every desire.

It was one of those mornings when the first words out of the kids' mouths lead to the desire to send everyone back to bed. Since that wasn't possible, Craig and I attacked a pot of coffee like a couple of wolves arguing over a deer carcass in the dead of winter. You see, the children wanted waffles for breakfast. We, being the tyrannical parents that we are, said no. They had waffles for breakfast yesterday. Sometime over the past two weeks, the answer "no" became unacceptable, and somehow negotiable, to the children. They argued and argued, teaming up on us like it would change the answer. We served them both eggs and toast and informed them continued arguments or complaints would lead to breakfast being thrown in the trash and children being sent to their rooms until they became old enough to move out of the house. Yes; it was largely an empty threat. But the kids ate their breakfasts without further incident.

I wish the rest of the day went more smoothly. The children apparently spent the majority of their winter vacation watching Judge Judy, because they felt the need to argue/debate/negotiate EVERYTHING today. Just before lunch time, Craig and I had reached our limits with both of them. We did a little yelling, scared the dog, and decided no more yelling the rest of the day. We were just going to dole out punishment like it was Mardi Gras and we were handing out beads. Then the day got fun.

We had kids in time out, toys in the closet, kids sent to their rooms, and tears of devastation. The kids fought with each other, chased the dog, argued with us, threw toys, made all sorts of sassy comments, and overall tested our limits in ways that hadn't happened since...well...last year after the holidays. Matthias refused to get his own toys, eat by himself, or do anything independently. It was nonstop. At one point the children were both purple faced and crying, I think because their blood sugar levels had finally fallen to a reasonable level. Craig was in the corner rocking and clutching a cup of coffee saying "I just can't do it anymore." Like Mick in the Rocky movies, I rubbed his shoulders and informed him he had to go back in there. "You're gonna eat lightning and crap thunder! Now get back in there and dole out some preschooler justice! We've almost broken them!" OK...maybe it didn't quite happen like that, but those are the images in my head as I reflect on the events of the day.

The kids fought us straight on through bedtime. Magnus was sent to bed right after bath time, and Matthias decided to throw one last bit of sass my way as I was tucking him in. I know tomorrow will be largely the same as today, but with one exception...Craig will be at work. I'm pretty sure by noon I'll be ripping my hair out. As you're going about your daily routine tomorrow, think of me and send a little energy my way. I'm gonna need it.

Happy New Year

2012-01-01T18:15:00.000-08:00

My Mother and Step Dad stayed at our house until Tuesday, playing with the boys and having a good time. They left early Tuesday morning, and I spent the rest of the day tearing through the house cleaning to prepare for our next round of family and Christmas cheer.

Late Tuesday night, we welcomed Craig's uncle and aunt into our home. I've met them only once before for about five minutes, so virtual strangers walked into our house at around 11 PM that night. Earlier in the week, we received a call from Craig's Grandmother, who, along with Craig's Mother, had planned an impromptu family reunion at a hotel about an hour north of us. She asked if we would put up Craig's Aunt and Uncle for a night, and we, of course, agreed. The next morning we headed north to hang out with Craig's entire extended family.

Craig has a great family. They are all very nice, and he has three cousins our age who are hilarious. Magnus wrapped his arms around Craig's Dad's leg and remained there for the entire reunion; he's a little obsessed with his Grandfather. Matthias listened intently to the myriad of new voices around him while firmly planted on my lap for the majority of our visit. He is getting better in crowds as he gets older, but he tends to stick close to me.

At one point Craig's cousin's 11 month old toddled over to me. Matthias was sitting comfortably with his Aunt Leslie about three feet away from me at the time, so I scooped her up and played with her a little bit. Matthias listened for a minute and then asked what I was doing. " I'm playing with a baby, your cousin Abigail." He scowled and continued to listen as I played with his cousin. A few more minutes passed, and he said, "Mommy's all done with the baby." He hopped down, walked over to me, and reclaimed my lap with a definitive "MINE" look on his face. Luckily, Abigail's mom was sitting next to me and took the baby. Matthias lectured me on why I should no longer hold babies while he super glued his head to my shoulder.

We slept at the hotel, which is always an adventure with little ones. Magnus and Craig were in one bed. I slept with Matthias in the other, and he spent the majority of the night reaching out and petting me. Craig and I have a very strict "NO KIDS IN OUR BED!" policy, so sleeping with Mommy is a treat. He did this before when we had to share a bed on our way to Florida. I'm not sure if he's just making sure I'm still there or what, but he had uncanny timing and was able to lay a gentle hand on me every time I started falling asleep. I may have gotten a couple of hours of sleep at best, and he couldn't have had much more since he was the one reaching out and waking me up.

We spent a little more time with family the next morning and headed home around 1:30. As quickly as I could, I unpacked and repacked to head to Craig's parents' house the next morning. Yes. I was tired and largely ignored my children as I did this. I mean, who the hell planned this stupid schedule anyway???? Oh yeah...me. But Craig was involved, so I gave him a dirty look.

We woke up the next morning and rushed around getting ready to leave. Molly, who had spent the previous night at a doggy hotel, was no further than an inch from our heels the whole time we were packing. We packed up the whole crew, including the dog, to head two hours south to my In-Laws. Once we arrived there, things finally started to calm down. Craig's Father has a rather impressive model train layout in the basement of their house in addition to numerous train toys the kids love, so they retreated to their lair and barely came up for air during our visit. Magnus is kind of like Gollum, hissing and biting at anyone who dares intrude on his "precious," and I'm not sure if his "precious" is the trains or his Grandfather. He begrudgingly allows Matthias to participate, but Matthias isn't quite as into it as his older brother. He likes the whole train thing, but he usually wanders upstairs eventually to play with Grandma.

The kids don't really have a concept of years yet, so New Year's Eve didn't register with them at all. Matthais was in bed by 10, me by 10:30, and Craig and Magnus brought up the rear at about 11:30. We were all so exhausted, not one of us saw midnight. Much to my dismay, the kids were both up before 8 AM. On a normal day, no problem, but since they had been up so late I had hoped they would sleep a little late. On top of that, they both skipped naps today. We arrived home with children so sleepy they were slurring their speech by 5 PM. Craig and I resolved to take deep breaths and try to get the kids through dinner and their bedtime routine without too many problems. Our children get absolutely crazy when they are tired, usually dissolving into fits of giggles for no real reason. I suppose it's better than whining and crying, but it can be a bit annoying. We called it early and got them in bed tonight by 7:30. Matthias looked like a bobble head, too tired to hold up his noggin by bed time. Magnus was laughing and giggling at...the wall I guess...who knows? We sort of walked him through his bedtime routine as best we could, brushing his teeth while spouting nonsense and cracking himself up.

So we look toward 2012 with hopes for a healthy and happy year. We had a great holiday season, and we are so happy it is over. The kids are asleep, and Craig and I are on our way to do the same. Happy New Year, ya'll.

Merry Christmas

2011-12-25T18:40:00.000-08:00

Christmas is the holiday that seemingly never ends. One of these days we will learn to scale it back, but for now we celebrate the holidays until we have egg nog pouring out of our ears and Christmas joy oozing from our pores. I can't wait until New Year's Eve when it will all be over, and yet I can't stop the cheer either.

We began the fun with a trip three hours north to my big brother's house on Thursday night with Molly in tow. My mother and her husband were also visiting, so we had six adults, seven children ranging in age from three to sixteen, and three dogs all under one roof for about 36 hours. Now THAT is a holiday party. We also managed to squeeze in a trip over to Craig's grandmother's house for a couple of hours; she lives close to my brother.

Going to my brother's house is like watching a well choreographed dance, or maybe more like watching the well choreographed fights in the Rocky films. He is the father of five, three boys and two girls, so you would think his house would be nonstop chaos. On the contrary, his family works well together, and they are a riot to hang out with. I'm always a little surprised at how well they play with my kids and each other. At this point, Matthias' blindness is old news. They include him as much as they can, with the older kids taking the lead on helping him when necessary. My personal favorite is when they play Hide and Seek with the 16 year old usually being "It" pretending to be a zombie eating the other kids when he finds them. The last time we were there, I was pretty convinced Matthias thought his cousin's name was Zombie; that's how he tends to refer to him. Adam is actually a big hearted oldest brother who has more strength and intelligence than he understands at his young age. Magnus has a cousin his age, Will, and they fight and play pretty well together. It is always fun watching two five year olds who know everything duke it out for a few days. The girls, Cleo and Karis, are both smart, gorgeous young women, one of them pensive and observant while the other tells you anything you need to know...or don't need to know...she sort of has the family talking trait. Then we have the whimsical middle schooler, Jake. You never quite know what he will say or do, but I promise it will be entertaining. All of the kids are now getting to an age when it is so interesting to chat and hear what they have to say. And since there are five of them, someone is always saying something.

It is a house full of big personalities with the two biggest personalities in the lead. I describe my brother, Bill, as the most lovable asshole I've ever known. He's sort of like a toothless pit bull, full of growls and vicious barks but really only wanting a bacon flavored biscuit and a belly rub. He is a good father, and he has dedicated his career to providing independent living services to adults with developmental disabilities, although he would NEVER describe himself this way. He torments me much the same way he did when we were children, flicking me in the ear and calling me a "dork" or a "nerd" or some such nonsense whenever we're together. He doesn't acknowledge Matthias' blindness as a disability at all, which I sort of love about him. His wife, Lori, is a strong, beautiful woman who is completely secure in who she is and driven to work hard. I fear for any obstacles that may find themselves in her way. She balances this part of her with a tender heart that loves my brother and the children very much, and she uses her skills as an achiever to keep the household running smoothly.

It was pretty much nonstop go go go from the moment we walked into their house, but in a way that is fun not hectic. There's not a whole lot of down time in a house with thirteen people and three dogs. We laughed, ate a ridiculous amount of food, opened presents, laughed, played video games, played board games, ate more food, and enjoyed our time together.

We headed home on Christmas Eve and arrived at our house around 2 PM. We had a little down time then headed to the church down the street (where Magnus goes to school) for Christmas Eve service. The service at this church is specifically designed as a multisensory experience for preschoolers. I know!!! How perfect is that??? Craig and I are not at all religious, but we think this service is a fantastic opportunity to teach both of our children the story of the birth of Jesus. It is only about 30 minutes, and they do a beautiful job of involving the kids. At the end of the service I spotted one of Matthias' classmates and went over to wish her and her family a Merry Christmas. His little classmate grabbed him, hugged him, and smacked a nice wet kiss right on his lips. Matthias stumbled back to me with a mixed look of pride and confusion and muttered "Merry Christmas" to his classmate. He smiled like a little imp when I asked if that girl gave him a kiss. I can't blame her. He's a pretty good looking kid.

Our jumping elf, aptly named Mr. Elf, dropped a few gifts under the tree while we were at the service to keep the kids occupied on Christmas Eve. We had a blast playing a game very similar to Kerplunk, except instead of marbles it has monkeys. The kids had great fun chanting "MONKEYS! MONKEYS!" at each turn, and they were pretty hilarious doing it. We had a little dance time (the kids are rather partial to Party Rock Anthem), made some cookies for Santa, and got the kids ready for bed. I was so happy when they went to bed. Creating Christmas magic is exhausting.

Molly was happy to wake me up around 7 Christmas morning, which was perfect because I needed to make Matthias the cinnamon rolls he requested. As I was slipping the rolls in the oven, I heard a gasp from the stair well. There stood Magnus with his sparkling blue eyes. "That's a whole lot of presents," he said. I smiled and asked him to go wake his Dad, and he replied, "Already did. He's on his way down." "Then go wake Grandma and Grandpa, please." My Mom and her husband, John, joined us for Christmas. He took off on a mission as Craig and Matthias slowly made their way down the stairs. This moment always hurts a little. I wish with all of my heart Matthias' face would light up the way Magnus' had. Craig described the presents under the tree and the stockings full of treats to Matthias, and he said, "Presents??" in disbelief.

"Hey Matthias," I said. "Know what I've been doing?" "What?" he replied. "I made you cinnamon rolls." His face lit up. Not quite as much as Magnus' had when he saw the tree, but it had all of the pure child happiness of Christmas.

We plopped the children down to open their stockings. Magnus tore into his with all of the energy you expect from a five year old on Christmas, and Matthias gently took his time examining each little treat. When that was done, I finished making breakfast. The children enjoyed their breakfasts and patiently waited to dig into presents.

When breakfast was over, I had everyone put their hands in the air, wiggle their fingers, clench their fists and release them. "We don't want any cramping, so make sure you continue your warm ups before we commence to open presents!" The children giggled and declared themselves ready. We settled into our places in the living room, and we slowly opened the presents one by one enjoying each person's surprise. After the first round, Matthias got it. He became more excited and dove into each present with excitement worthy of a three year old. The kids were both entertaining to watch, thoroughly enjoying each gift. Magnus opened his Hot Wheels Wall Track and said "This is TOTALLY what I wanted!!" Matthias replied, "Totally!"

We allowed the kids to have a pajama day for the rest of the day as they explored their gifts. It was an absolutely lovely Christmas, and it continues this week (more on that later). The kids were happy with their gifts, but I was pleased to see they were even happier to spend time with Craig, me, and our family.

I'm Going to Hell, or Am I?

2011-12-15T17:42:00.000-08:00

I try to be a kind and patient person for the most part. I don't imagine myself to be Mother Theresa by any stretch, but I honestly try to view everyone as a valuable person who deserves respect. Try is the key word here...I don't always succeed. However, if someone is rude to me, I try to remember they may simply be a good person having a terrible day and shrug it off. If someone is nice to me, I try to return the favor. This past Saturday, though, I found my verbal filter had taken an early Christmas vacation as I argued with an eighty year old woman in the middle of a Christmas party for blind kids.

We started out Saturday with donuts and a trip to the Indianapolis Children's Museum. The kids zipped around the museum like...kids hyped up on sugary donuts? Yeah. That'll work. We managed to hit all of our favorite exhibits AND convince Matthias to go down the one story tall Yule Slide twice, despite his initial vehement protests, in a short two hours. We were all having a great time, and I seriously considered ditching our prior commitment to attend a holiday party for blind kids. I know. So not a nice thing to do, but we were having so much fun. We had, however, RSVP'd, so we headed out.

I had forgotten to grab the party invitation on my way out the door. We knew the building we needed to go to, but (it's a big building) we didn't know exactly where in this building to find the party. We started to wander in the direction we suspected to be correct, but we didn't hear or see anything promising. I was about to give up when we rounded a corner and saw a young man (lower 20's) dressed in a Santa suit with so much stuffing he looked like a giant teddy bear, holding a white cane. "I'm guessing we're headed in the direction of blind Santa." Did I actually say that out loud???? Did I start this post declaring that I try to be a good person? Did I think about ditching this party AND make a snide comment about Santa? Why were the bottoms of my feet suddenly warm...no hot? Craig shot me his "if you can't control the mouth, shut it" look he gives me when I say or do something inappropriate (happens a lot), and I complied. I put on a smile and guided my boys into the party.

We arrived just in time for all of the kids to meet Santa. The party was much more intimate than I had estimated, with maybe 15 families including ours in attendance. Santa's entrance followed ours by about 2 minutes. We just saw a very different Santa a week before, so I crouched down and chatted with the kids about how Santa uses helpers here and there during the Christmas season. We were the last ones in line to meet Santa, who had (parent provided) gifts for each kid. The kids chatted with Santa for a minute then snatched their gifts and sped away to open them. As we were headed back toward the party room, a little wisp of sunshine headed our way. She was a skinny little nine year old with short brown hair and such a lively personality I felt my heart brighten.

"Open your gifts right here. Everyone else did," she said in such a way I think I would've given her my credit card if she had asked. Without saying a word, we all plopped down where we stood, and the kids started ripping.

"Oh. You got a firetruck."

"It's an ambulance." I smiled. "Let me get it out of the box for you, Matthias."

"I'll do it," said our new friend, and she grabbed the box from me. She tore into the box and had the toy out well before I could've accomplished the task. I asked her name and age, and she gladly shared the information with me. She asked about the boys, and I told her their names and ages.

"Can they see? I'm half blind. Always have been. Always will be," she said with a brilliant smile. I chuckled and explained that Magnus could see fine while Matthias was totally blind. Her parents then called her over to them, and I was genuinely sad to see her skip away. We continued on back to the party room for some treats and hopefully some more delightful conversations.

I played on the floor with my kids and several others for a little while. Then it began. An elderly woman had been sitting about 15 feet away from us observing our little play time. She complimented my kids and dove right into the question of which kid was blind and why. I gave her the Cliff's Notes version...cancer...lost eyes...no vision...he's fine. She launched right into an explanation of her familial connection to blindness, although I confess I didn't understand most of what she was saying. Last year I went to an Otologist, and I've lost a little of my hearing over the last few years. I have trouble hearing very low and very high pitches, particularly in an environment with lots of other auditory distractions. I stood up and stepped closer to her to try to hear her better.
"In ten years, he'll be able to see," she said.
"Who?"
"Your son." Uh. What??? Maybe she hadn't heard me. "No ma'am. He will never see. He lost both eyes."
She then launched into a spiel about how she read about a man who had no vision, but they were able to locate the problem and fix it. "You mark my words. In ten years, you'll be saying 'That old lady was right.'"

There are many problems with this conversation, but I'll try to be brief. 1) At present there are no commercially available or FDA approved ways for my son to see. I am aware of studies and remarkable technologies that may eventually make this possible, but I believe our energy is much better spent teaching him to be blind. If/When a qualified physician hands me a device that will restore vision to my child, I'll think about it. Until that day, I'm not going to waste my time. 2) I refuse to allow myself or anyone else to give Matthias the impression he is broken. He doesn't need to be fixed, and his life would not immediately improve if he suddenly had vision. This is not a fairy tale where his vision would be restored and he would live happily ever after. His world is different, not better or worse. So I REALLY resent the implication that he needs some sort of repair to make all of life's challenges better.

"While that would be nice, I am not really interested in exploring the possibility at this time. He's blind, and I'm completely OK with that," I was trying to be nice.
"But he WILL see someday." Now she was pissing me off. Again, nice sentiment. Not going to invest any energy in it. I explained to her that his world is a wonderful, beautiful place, and I am happy with exactly who and what he is. Well, that was the gist of what I said, but I'm not sure I was so nice about it. I ended up walking away from her rather unceremoniously, knowing I was being rude. I couldn't help myself; if you want my blood to boil please tell me how you can fix my poor little blind kid. He doesn't need to be fixed. He needs to be taught how to survive a world with crazy old ladies chasing him around trying to make his prosthetic eyes work. And Braille would also be helpful. And O&M.

I quelled my irritation with an unnecessary amount of home made peanut butter fudge and settled on the floor again to play with the kids. I chatted with the organizer of the party for a little while; her daughter is visually impaired as a result of a different cancer. We've met once previously and found we have more than a few things in common. After hanging out with her for a few minutes, we made our way out the door. Matthias pressed the buttons on his ambulance and mimicked the sounds all the way to the car, while Magnus asked repeatedly when he and Craig could assemble his new Lego truck. I reflected on the events of the day, from blind Santa all the way to my mild rudeness to a well-meaning elderly woman. I decided that if these actions land me in hell, at least my feet will finally be warm.

Check this out:
Brainport Vision Device in use
For more information
There's other stuff like that, too. Like little cameras inserted in prostheses, which are in the testing phase of development. We try to keep aware of developments in medicine and technology while training our son in traditional techniques for living with blindness.

Getting in the Christmas Spirit

2011-12-05T17:51:00.000-08:00

I schedule Matthias' oncology appointments six months in advance, so the perfect timing of this past Saturday's events was a delightful coincidence. For the last several years we have participated in Breakfast With Santa at Craig's work, and it is quickly becoming one of our favorite little family traditions. It happened that Breakfast With Santa was Saturday morning, and we decided to go get our Christmas tree at our favorite local farm afterwards in order to complete the day's festivities.

For some strange reason, children seem to think their parents' workplaces are magical. My kids ask all of the time to go to Daddy's work, and I'm betting their not alone in that obsession. They don't care what we do there; they just love to go. Once a year we combine that with the magic of Santa Claus, and we need to provide the children with supplemental oxygen to keep them from passing out with excitement. This is our third year attending the event, and they've hired the same gentleman every year to play the big man. We've heard from some people who know him personally that he is a rather huge fan of our kids, and he looks forward to seeing them each year.

2009

Our first year, Matthias was about fifteen months old. He wasn't talking yet, but he was showing clear understanding of language. Magnus was a three year old with a mission to win the hearts of everyone who met him. At that age we called him "The Collector" because he had a way of winning people over everywhere we went. We debated a bit about bringing two such young kids to see Santa, but in the end we decided to give it a shot and see how it went. Honestly, I completely understand why young kids don't want to hop up on a bizarrely dressed laughing stranger and tell them their hearts' desires, but I suppose the only way to help them learn to enjoy it is to try. We figured Magnus would talk to him but probably not sit on his lap, and we were pretty sure Matthias would suction cup himself to me as soon as he heard the first "Ho Ho Ho." When it was our turn, Magnus put on his brightest smile and trepidatiously approached Santa. He talked a little bit to Santa, somehow managing to communicate his desire for a toy train while gently cutting off the circulation in my right leg. With his other hand, he made sure his buddy Doggy was guarding against any unforeseen reindeer attacks. He survived his first visit with Santa and then sprinted back to his Father to collect big hugs and kudos for being brave and polite. Then, it was Matthias turn. I quietly informed the big man that Matthias was blind and we should take it slow. Santa nodded and reached over for his jingle bells. Matthias liked the jingle bells, and they became Santa's ticket to a little snuggle. Matthias happily sat on Santa's lap playing with the jingle bells in one hand and his blue crinkle tube (one of his favorite toys at the time) in the other. Santa was great, talking him through it and moving slowly as not to surprise him. I'm pretty sure Matthias didn't even register Santa's presence. Nobody cried or punched him in the nose, though, so we considered the visit a success.

2010

Last year we drove through a snow storm to see Santa, and Magnus was more excited about it than he had been the previous year. Matthias was just learning to speak and made frequent use of the word "no" anytime we mentioned Santa, so we were pretty sure he wasn't going to get too close. This time, Magnus brought his trusty attack blue jay to protect him in the event of an unforeseen threat. He was ready to talk to Santa until the "elf" came up to tell us we were next; then he sort of panicked and zipped behind my legs to hide. "You're Magnus and Matthias, right? Santa's been looking for you. He's so excited you're here." We later learned she wasn't just being nice to the kids. Matthias had really touched the man behind the suit, and he really was excited to see our family. Magnus again wrapped his little arms around my right leg, so I limped up to Santa with Magnus dragging behind me and Matthias in my arms cutting off my airway. Matthias only released my neck with the promise of holding Santa's jingle bells again, and Magnus was eventually coerced onto the Big Man's lap when he was asked to explain all about this little bird he had brought. Neither was terribly excited about seeing the Man in Red, but they didn't cry either. Again, a small step forward.

2011

This year we were happy to hear that Breakfast with Santa would be right after the doctor appointment; we knew the event would help to refresh our spirits after a heavy day. We talked about it all week, so the kids woke up early, ready to go. We arrived at Craig's work just in time for the event to begin, and the kids immediately began begging to go play at Craig's desk. Never mind Santa or breakfast; they wanted to play with Craig's computer. We dropped our coats at his desk and eventually made our way to the cafeteria. There was already quite a long line to see him, so we got in line for about a 20 minute wait. Again, when it came our turn the "elf" recognized us and knew the kids' names. She indicated Santa would be happy to see us. She bought the kids' trust with a couple of candy canes, and Santa beamed at us when he saw the kids. He started chuckling, saying the kids had REALLY grown since last year. First things first, Matthias cautiously approached Santa and asked for the jingle bells. He chatted with Santa for a minute, and Santa rather gently and quietly eased Matthias onto his lap. Matthias was as rigid as a marble statue, legs straight out and head crammed against Santa's shoulder facing toward the sound of my voice. I put my hands on his legs and whispered "Calm...you're okay," to him. He relaxed his legs. I then placed my hands on his shoulder and head and said "You're okay. Just relax," and the remainder of his stress melted away. He politely requested a vacuum, a cinnamon roll, and a surprise before proudly declaring he hadn't cried when he received ouchies the previous day. Santa told him he was very proud of such a big boy, and then Matthias slowly descended to the floor to give his brother a turn. Mr. Sneaky also neglected to return the jingle bells. Matthias started ambling away happily playing with the bells as Magnus settled in on Santa's lap and began explaining his list of requests for Christmas. Magnus slowly detailed every item on his list, redirecting Santa's attention back to the task at hand when he seemed distracted. He made extra certain to stress the importance of the most coveted items. A look of terror crossed his face when Santa indicated he was not going to take the list from him at this time, so I suggested we send it to the elves at the workshop via the Post Office. Magnus scowled and narrowed his big blued eyes. He looked from me to Santa, considering our proposal, and then reluctantly agreed. We ended our visit with a very nice breakfast. We headed home to collect Molly and drove out to the farm for a tree.

One of the first ways we changed our Christmas traditions to include Matthias was to start buying a real tree. We figured the scent, the texture, the process of choosing one all completely included the blind kid. Last year we discovered a small local farm that has everything from U Pick berries in the summer to Christmas trees in the winter. The owners are an incredibly nice family, and we are always happy to give him as much business as possible. We picked up the dog at home and headed out to the farm. I asked one of the gentlemen which of the trees is most fragrant, and he pointed us in the right direction. After telling the kids to get their noses ready, we sniffed our way down the rows looking for the perfect tree. Magnus quickly picked one out and begged for it to be the one. Matthias tucked his head into my neck, wrapped his arms around me, and asked to go home. He was officially done with family fun. He didn't like the prickly tree last year, and it was apparent those feelings would carry over to this year. Magnus' elation at picking out the family tree unopposed made up for Matthias' lack of enthusiasm.

While Magnus attacked tree decoration with vigor worthy of an artist such as he, Matthias wanted nothing to do with it. He reluctantly touched the tree and hung a few ornaments, but he quickly abandoned the task to play with a stuffed pig that oinks Jingle Bells. He had been so great most of the morning, we decided not to push our luck with him. It is difficult as a parent to know when and how to choose your battles, but Craig and I are getting better and better at judging our boys' thresholds. We had, after all, made further progress on the Santa issue. We would work more on the tree over the next few weeks in hopes he would enjoy it more next year. It was a pretty good day with progress into the realm of teaching our kids to enjoy this festive season.

Riley Visit

2011-12-01T16:46:00.001-08:00

"Keep your face to the sunshine, and you cannot see a shadow." Helen Keller

8 PM December 1st

I recently came across this Helen Keller quote (interestingly, I believe she borrowed it from Walt Witman), and I love it. In the morning, we have an appointment with our Oncologist at Riley Hospital for Children, or more accurately Matthias' Nurse Practitioner (he can see either for check ups). Honestly, I love both of them.

Matthias' Oncologist is a rather petite, pretty, Indian woman with shoulder length black hair and kind brown eyes. She is direct in a compassionate way, and she has been hugely supportive of our family throughout this difficult journey. She is a mother as well as a physician, and she blends those worlds brilliantly, somehow managing to be a competent medical advisor as well as a caring woman. Our Nurse Practitioner is in her early to mid fifties, a little taller than me with a full figure. She is also a lovely woman, and she commands respect with her intelligence and kindness. She embodies the word nurse. She is there to care for her patients, and she is obviously passionate about this work. I can't imagine choosing such a tough career, but these women are the perfect team to care for incredibly sick children and their families.

All week, I've been anxious. In addition to my usual issues preceding an appointment with the oncologist, Matthias has a small lump behind his ear. Here's the other problem with being the Mother of a cancer survivor, or really being a cancer survivor in general. Think of all of the anomalies on your body or on your kids' bodies. There are tons. I notice everything on Matthias...every bruise, every mole, every lump. We've been down this road a few times, and I am sure it will be a lifelong concern. About a year and a half ago, Matthias had a little cyst on his armpit, and the general medical consensus was "If it was any other kid, I would say this is not a big deal. Given his medical history, we need to have it removed and biopsied immediately." It was, of course, benign, but it was scary nonetheless. In this case, there is a lymph node behind the ear, so that doesn't make me happy. This lump could easily be a mole (Matthias already has lots), or a cyst, or..... I hate the or. The or haunts me and keeps me up at night. Honestly, even if it is a swollen lymph node, there are lots of reasons for that which are non life-threatening. Or... I'm sure it will be nothing, but all the same I asked Craig to keep his afternoon open tomorrow.

So this is the night before our semi-annual appointment with the Oncologist.

9 PM December 2nd

I woke up this morning grumpy and tired...restless night of sleep. Our morning routine was largely normal; Magnus had school today. The only exception was my snippiness coupled with my children's desire to move like they were submerged in sludge this morning. You would think two hours would be plenty to get two kids fed and dressed, but I found myself dragging both of them out the door five minutes before Magnus had to be at school. As an added little stresser, we decided to take Molly to a doggy daycare for the morning since I knew I would be gone for around four hours...she's not ready to be in her crate that long yet. We dropped The Mag off at school and proceeded on to the doggy daycare. It's always exciting when I have Molly the "I'm excited about everything...SQUIRREL!" doggy in one hand and Matthias the Sloth in the other. I am certain I am a sight to behold; it feels a little like being pulled apart by wild horses. I somehow managed to get the dog settled in the daycare, and Matthias and I were running a little early for his appointment. It takes us a while to get all the way to Riley, but I had time to stop for a caffeine infusion at Starbucks before getting on the highway.

I cranked up the radio per Matthias' request and quietly sipped my coffee as I lost myself in memories as I drove. I've made that drive quite a bit. I was dangerously close to self pity when Matthias decided to give me his version of Hot Chelle Ray's "Tonight Tonight," except instead of singing the words he was clucking like a chicken. I stopped short of spitting hot coffee all over my dashboard at 70 mph. He clucked the entire song along to the radio with a gigantic cheshire cat grin on his face. I love that kid.

I was feeling pretty proud of myself when we arrived about 30 minutes early for our appointment. I'm NEVER early for anything. I was hoping for this. I needed to pick up Magnus after school, so we were working with a time limit. They tend to have a looser schedule then most doctor offices, so I was realistically hoping they might get us in early. Honestly realistic...it's happened before on several occasions. We stepped up to the desk at the oncology ward, gave our names, and checked in. During this process, two nurses we knew came out to say hi and chat for a minute. I confess, there is part of me that likes going to Riley because I get to see the nurses. Several of them have worked with us since the first day, and I feel like I'm seeing old friends. They all seem to genuinely care about our family, and they all want to see Matthias doing well. I legitimately enjoy seeing them.

After we check in, Matthias always scowls as they wrap his ID bracelet on him. You can actually see him trying to figure out how to get the damn thing off. We used to refer to him as Houdini when he was a baby. They put it on the ankle for babies, and he was always managing to wiggle out of it. After this somewhat comical process, we always need to go get blood drawn. The oncology lab is right next to the office, so it is a short walk over to that desk. This is the part that I hate. Last week, Matthias asked me if he was going to the doctor soon. I don't know if he overheard me talking to Craig or something, but we have a "medical honesty" policy in our house. I told him yes. He asked if he was getting "ouchies." I said yes. We've been talking about the ouchies all week, and he requested...OK demanded...to bring his stuffed dog, "Doggy," to get ouchies too. Actually, he wanted to bring Magnus' Doggie to get the ouchies (gotta love brothers), but I said no.

Since the first time we had blood drawn, it has always been the same woman to do it. Here is another job I can't imagine, but she's amazing. I don't know how a woman who watches kids cry all day can be such a bundle of sunshine. She's short and portly with gray hair and glasses. She has a quick smile and a contagious laugh, and she manages to show each patient a little love as she pokes them with a needle. She also recognized us, remembering that Matthias told her "Good job" the last time we visited. She ushered us back and immediately engaged Matthias in a light-hearted conversation as she prepared to draw the blood. I told her we also had an order, with her permission, to have Doggy's blood drawn, and she giggled at the suggestion. She was spectacular. I reminded her Matthias is blind, and she showed him (i.e. let him touch) everything she did while she described it in detail. She worked on Doggy first, tourniquet and bandage and all. She then prepared to draw Matthias' blood, again providing perfect detail. For the first time ever, Matthias didn't cry at all. He didn't even make a sound. He just sat there with a somewhat quizzical look on his face. When she was finished bandaging his arm, she positively glowed and practically shouted "Good Job!" I don't think I've ever heard her laugh so much or speak quite so loudly. She was making such a ruckus people in the hallway were stopping to look through the open door. She was blown away to have such a young patient calmly allow her to collect her labs. She guffawed as Matthias politely requested the peanut butter cup I promised him before we went in. Her laughter continued as Matthias devoured the little morsel, with chocolate running down his little chin. He hadn't even swallowed it before he said, "lollipop please." I handed him a lollipop (I always come to Riley armed with sweets), and we headed on our way, with our friend still laughing behind us.

We were called pretty quickly when we returned to the oncology waiting area, and another of our nurse friends checked us in and took Matthias' vitals. Again, this has always been the same nurse, and she loves this boy. We chatted as she went about her business, and Matthias bragged that he hadn't cried at his blood draw. Now he was worried about getting his blood pressure taken, though. We let him put the blood pressure cuff on Doggy first, feeling how it tightened on his stuffed arm. He then, for the first time ever, calmly allowed her to take his blood pressure. She even got an accurate reading! This kid has ALWAYS fought the damn blood pressure cuff more than the blood draws. We were two for two.

We were escorted to our exam room where we waited...and waited...and waited. Unfortunately we waited so long I had to call Craig to go pick up Magnus at school. While we waited, we listened to the Emergency Alert System on my phone, played a rousing game of me putting a toy down Matthias' shirt and him getting it out, and then Matthias jumped around the room like a maniac for about ten minutes. He was just getting to a point where his boredom induced craziness was going to get him in trouble when our Nurse Practitioner, Ann, came in. She apologized for the wait and came and sat next to us.

Ann reintroduced herself to Matthias and explained she had worked with him since he was a baby. He found this concept fascinating. We chatted a bit about school and family and such and then she asked him to go to the exam table. She gave him a pretty basic exam from head to toe, letting him use her stethoscope to listen to his own heart. He liked that. He didn't fuss too much during the exam, although he calmly but firmly notified her he did not care for the ear exam and would appreciate her not examining them again. And no. He didn't want to hold the instrument.
I mentioned the lump behind his ear, and she took a look.
"That feels like a lymph node," she said. Dammit.
"You're not supposed to say that, Ann. You're supposed to say 'oh that's just a mole' or something completely neutral."
She smiled. "But I think it's a lymph node. It feels OK, though. There could be any number of reasons I can feel it. It's small and it moves, so that's good news. If it didn't move and was rubbery, that's a problem. Has he had a cut or wound on his head lately?"
"No."
She thought for a minute. "I'm going to get one of the oncology physicians for a second opinion, but I am pretty sure we are going to wait and see on this."
She finished her exam and then went to get one of the doctors. The doctor concurred with Ann's findings. As a general rule, you don't want a lump on any kid with a history of cancer, particularly genetic cancer, but they agreed that we should give it a few months before doing anything invasive. Ann requested I email her monthly updates indicating the status of this lump. If it gets bigger at any time or if it's still there in two to three months, we need to go back. They both thought it would probably go away in the next month or so.

Since Craig was on his way to pick up Magnus and Molly, I offered to take my little man to McDonald's for lunch. "Yeah. I TOTALLY want to go to Old McDonald's!" was the reply. We had our lunch and headed home for an afternoon of playing with some good friends.

It feels great to have that appointment behind us, and I am simply elated that Matthias did so well with his ouchies. Craig and I actually found ourselves a little teary as a result...good tears, though. I confess, I wish Ann had told us the lump was just a mole, but that didn't happen. There will be this little nagging worry in the back of my head as we enjoy the holidays, and I long for a day when I can put that voice to rest. I'm not sure if that will ever happen, but for now we will try to keep our faces to the sunshine.

I Don't Hate Christmas, Just The First Part Of December

2011-11-29T18:46:00.000-08:00

Forgive me, but this isn't my usual light-hearted post. This is a tough time of year for us. I'll understand if you skip it.

Every year, Craig and I both have a tough time for a few weeks after Thanksgiving. We have referred to it as a "Triple Whammy" time of the year for us. We try every year to suck it up and enjoy ourselves, but a little sadness always creeps in. Problem 1: Our journey to Matthias' cancer diagnosis began on Thanksgiving 2008 and ended on December 10th, when he was diagnosed. Problem 2: So much of the magic of Christmas is visual. We always decorate the house and do whatever we can to engage Matthias, but it is a harsh reality that Matthias misses out on so much visual beauty at the holidays. Problem 3: We always have an oncology appointment at the beginning of December. Each year is getting better, but Craig and I always have a tough time right about now.

I probably don't really need to explain why I get upset when Matthias needs to go to the oncologist, which he does on Friday. Emotionally, it is a reminder of what was and what may be coming in the future. We need to have semi-annual check ups because we want to make sure he's not developing cancer again...because there's a chance. Every time we see the oncologist, it is a bold faced reminder of Matthias' delicate little life, as well as a reminder of everything we endured during that first year. It is also physically challenging. As many times as I have done it in three years, it never gets easier to hold him down while a medical professional hurts and scares him. The Riley Hospital staff always offers for me to leave the room, but I can't imagine leaving him alone in a room to be traumatized by strangers. I would much rather be there hugging him and whispering words of love and encouragement in his ear and deal with my resulting heavy heart than leave him alone. Every December and June, we travel to Riley where I put a smile on my face and do my best to guide him through a scary and physically unpleasant day, after which I usually have a good cry and a few beers with Craig.

And then we have the beauty of Christmas...the tree, the lights, decorations, sparkles, etc. We enjoy getting creative to bring the spirit of the holiday to Matthias (making scented ornaments, getting a real tree, finding various things that make noise, listening to stories, and so on), but he misses so much it is hard to ignore. We still do all of the visual things that we enjoy with Magnus, but it is so clear that Matthias is often left out of this fun. It stings.

And then we have the memories. On Thanksgiving 2008, Matthias came down with a cold, and I was scared, based on his labored breathing, that it was in his chest. After the holiday, I took him to our regular pediatrician, who observed that Matthias' sight didn't seem to be developing normally. He recommended a consultation with an opthalmologist, but the earliest appointment he could get for me was December 10th. I was really more concerned about this nasty cold at the time, so I didn't ask too many questions in that moment. When I got home, his words started to haunt me. I did a quick online search of vision problems in babies, and retinoblastoma was referenced repeatedly. I had a mild heart attack, and I called the pediatrician back and asked if that's what he thought was going on. He called me back into the office and took a look at Matthias' eyes. He said he really didn't think that was the problem. He recommended we keep our appointment with the opthalmologist, but he couldn't move it up any further.

On December 10, 2008, we had an appointment at 3:30 PM. I remember running late; I was always running late with a baby and a toddler in tow. Magnus and Matthias were both in diapers at the time, and it seemed both of them were always pooping when we were ready to walk out the door. I remember realizing Magnus needed a change, running upstairs to change him after getting Matthias in his car carrier, coming downstairs, getting Magnus back in his jacket, picking up the carrier, smelling, growling, sprinting upstairs to change Matthias, getting him back in the carrier, getting both kids into the car, and leaving the driveway no less than 20 minutes behind. I had been advised not to be late, and the office was across town. I had two things on my mind on the ride over, and neither had anything to do with cancer. 1: I was trying to call the office to tell them I would be late, but I could not get a human being. 2: I was thinking about dinner. Matthias was going to be due to eat at about 4:30, which I was realizing would be roughly at the end of this appointment. I was thinking about whether to feed him there or feed him when we got home. Magnus was also going to be ready to eat when we got home, and I wasn't really prepared for that. So I was desperately mentally reviewing the contents of our refrigerator trying to figure out what I could throw together for the two year old while I fed the baby. I was already stressed, at least by my definition of stress at that time.

I easily found the doctor's office and moved as quickly as possible with a toddler and baby. I explained to the receptionist that I had tried to call to notify them of my tardiness, but I couldn't get through. She told me it was really no problem; she would get me in as soon as possible. Shortly thereafter, we were ushered into a small opthalmology exam room. Now here is my one and only gripe about our doctor's office, which I maintain to this day. This is a pediatric opthalmology office, and there was ridiculously expensive and equally sensitive equipment within child's reach EVERYWHERE! Already irritated by the course of the afternoon, I spent the next 15 minutes waiting for the doctor and yelling at Magnus. He was, understandably, grabbing anything in reach while I tried to keep Matthias occupied. Magnus was actually in a time out when the doctor finally entered the room, and I'm sure I looked frazzled at best. He introduced himself and did a brief exam of Matthias, then hastily left the room. I knew it wasn't good, but he didn't immediately share his findings with me. He popped in to explain he was trying to find a colleague who was proficient with retinal reattachment and was about to leave, he was sorry for the delay, and he would be right in. I overheard a hushed conversation with this other physician indicating the damage was severe, he needed his colleague's help, and they needed to get him in right away. I inserted myself into the conversation. "Excuse me. Can he see?" "Not much," was the reply.

For some reason, I didn't panic. I actually felt very calm. Magnus must have sensed something was going on, because he finally calmed down and sat playing/reading in a chair next to me. The doctor quietly entered the room again and sat down across from me.
"This is once of three things. It could be a retinal disorder called (I can't remember the acronym now). It could be retinoblastoma, which is cancer of the eye. But we think the retinal damage is too severe for either of those conditions. Both retinas are completely detached. The damage is really more consistent with Shaken Baby Syndrome. So let me ask you...Who watches your children?" This last question was accompanied by one of the harshest glares I've ever received from anyone in my life. Before you judge our physician, we later became friends. He is a father of three and was convinced in that moment that our little helpless baby had been shaken, most likely by me.
On my side, however, this physician just inadvertently told me my son had a severe retinal disorder or a serious case of cancer. I knew nobody had shaken him. The only other people to watch our children at that time besides me had been Craig and my Mom, and I knew neither of them had shaken him.
"Me. I'm a Stay at Home Mom." I answered.
"We need to send you to Riley for some tests. And you will be met by some social workers."
"Of course. Whatever you need."

The doctor said we would need to go to Riley immediately for a CT scan to rule out tumors. There was a rather lengthy debate between him, a nurse, and another patient on the best way to get there, and we were told to go through the emergency room because the main hospital would be closed by the time we got there. I gathered up my things and prepared to leave.

I called Craig. How do you tell your husband that you're being accused of child abuse, your kid needs immediate surgery, and by the way, he's severely visually impaired with an unknown chance of repair? Oh, and I think it's not retinal damage but that cancer we read about. I actually don't remember what I said. I remember he was in the car and almost home, and I told him to meet me at Riley. I also called my parents, who were both speechless but as supportive as possible.

Craig and I easily found the hospital, but it took us an hour after getting there to find where we were supposed to go in. We were already exhausted by the time we checked in and found our seats in the waiting room. We didn't wait too long before we were called back to a bed for a brief physical exam. Then we were escorted to the CT scan room. Craig took Magnus to get some dinner at McDonalds (there's one in the hospital), while I carried Matthias into the scan room. The nurse placed some pads on the bed under the scanner so it would cradle the baby in a way to keep him still. I placed him on that bed, and the technician put a heavy lead blanket over him. He liked that and smiled at me. After placing a lead apron on me, the technician left to run the scan. He was absolutely still and silent as she ran her scans. I was allowed to hold his little hand and talk to him, so I quietly sang "Rainbow Connection" and stroked his little fingers. The scan was over quickly, and I was escorted back to Craig and Magnus, who were happily finishing dinner.

I had told the woman that I could find the waiting room again, but she smiled and told me she would be happy to walk me. It was then that I realized we were being monitored. I hadn't thought about it, but we were being watched and escorted everywhere. We went back to the waiting room and waited quite a while for the results of the CT scan. Around 8 PM we were escorted back to a private room with a crib and a TV. Magnus was as good as gold, considering he was two, ate dinner late, and was now up well past his bedtime. Even the nurses were highly complimentary of his behavior. We had called Craig's family, and they were on their way to pick up Magnus and take him home, but they lived two hours away from Riley. So he was there with us almost the whole time.

Somewhere around 9:30 or so an army of doctors, four or five of them, came in the room. I felt the smile fade from my face as I said, "This isn't good. There are too many of you. It's cancer, isn't it." One of the doctors said, "Yes. It's retinoblastoma." "It's treatable, right? I mean, I read it has a 95% survival rate. Right?" The doctor nodded. "Your doctor will call you tomorrow with more information. For now, we are going to get your discharge papers ready, and you can go home." I nodded, and they left the room silently.

I looked down at Matthias, who was kicking and playing in his little hospital crib. I cried softly and tried to comprehend what just happened. I think I had known from the first moment I read about retinoblastoma online, but it was so difficult to absorb this fact into my reality. Then I heard Magnus, who was sitting in a chair to my right happily finishing a late night picnic of graham crackers and apple juice. I was immediately aware that his life would forever be altered by this as much as Matthias and Craig and me, and my heart hurt for him, too. And then I looked at Craig, who was seated in a corner, head bowed, hands on his forehead. He looked at me and then walked over and hugged me. I'm not sure who spoke first or what was said, but we both took deep breaths and agreed we could do this. Our room was quiet after that, while I fed Matthias and Craig took Magnus out to his family, who had finally arrived to take him home and put him to bed.

Shortly after Craig returned to our room, there was a knock at the door. In came a resident working under our opthalmologist who was on call that night. He came in the door with some examination equipment and clumsily explained that our doctor had ordered him to come examine Matthias. Retinoblastoma is rare, so he wanted the resident to take this opportunity to see it. He obviously objected to this order. I'm not sure if he was nervous or an asshole, but he couldn't get the equipment to work and was pretty blase about the whole affair. We ran into him several times during the early part of Matthias' treatment, and he was always a little odd, sort of acting like all of this was no big deal. We learned to ignore him.

After our run in with the irritating resident, we were released to go home. We never heard another word about Shaken Baby Syndrome, and we never met with any social workers besides the one assigned to us by Oncology.

This picture was taken 3 days
before Matthias was diagnosed
with Bilateral Retinoblastoma.

It was late, almost midnight. We were drained, but we went home and went to bed. It was a shitty day. One of the shittiest we've ever had. Honestly, not the shittiest, but it was pretty shitty. And this time of year, we find ourselves remembering this shit and letting it go a little more every year. It just takes time.

While Craig was off smoking turkey...

2011-11-27T14:19:00.001-08:00

Ahhhh...Thanksgiving. Yes, thank you. It is a holiday I never registered as a kid, but I have come to love it as an adult. The last few years have been a bit anticlimactic because we haven't gone anywhere, but that's also made them quite nice.

Last year we were supposed to go up to northern Indiana to see my brother, but Craig became violently ill the morning we were supposed to leave. So last Thanksgiving I was stuck at home with a sick hubby, two bored preschoolers, three pies, and more hors d'oeuvres then we could eat in three days. No turkey or trimmings. I made impromptu noodle soup for my husband, and the kids and I ate a little soup and lots of pie. Thusly, my children began their love affair with pumpkin pie. In fact, Matthias has asked for it almost every day this year and was very excited as the big day approached.

Craig and I discussed going out to my Dad's house in New York this year for Thanksgiving, but he had to work on Friday so that was not possible. We invited Craig's family to come, but nobody could come until Saturday. We decided a Saturday Thanksgiving sounded delightful, so it was just the four of us at home on Turkey Day. We didn't want to have a big turkey dinner twice, so Craig requested homemade pizza on Thanksgiving. He said he wanted something we could all make together, and I loved that idea, too. I decided to take it one step further and make turkey shaped pizzas we could each decorate with toppings. Then, after a conversation with my brother during which I learned about a delectable taste treat called Pumpkin Whoopie Pies, we had our idea for dessert as well. A nod to Thanksgiving dinner without making the big meal.

Me helping Matthias with his pizza.
I wouldn't dare help Magnus.

Thanksgiving came and went quietly with the Macy's Parade, cartoons, books, and turkey pizzas. The kids had a blast making their turkeys, and they had more fun eating them. Of course, Matthias liked the idea they were turkey shaped, but he didn't really know what that means. He just likes controlling what goes on his pizza and where. Magnus is a true artist and carefully placed each topping for maximum visual effect. Both kids had great fun eating their turkeys. Magnus had a full on conversation with his turkey, although we did need to remind him turkeys gobble, not cluck. He kept reassuring his turkey he would be reunited with his legs, beak, feathers, head, etc. when each bite reached his belly. He was somewhat apologetic to his turkey as he devoured it. Matthias delighted in learning what "part" of the turkey he was eating, and his entertainment grew as he and Magnus (given the idea by Craig and me, I confess) voiced their turkeys' protests at being eaten. "No! No! Don't eat my feet!" they would declare in high pitch turkey voices. "Oh no! I'll never waddle again!" Their enjoyment of the meal culminated in the sugar packed whoopie pies, whose filling is marshmallow fluff mixed with powdered sugar, vanilla, and an entire stick of butter. The children ended up speaking in a language I didn't understand (Russain maybe?), but they somehow completely understood each other. While Craig and I were pondering how our children learned Russian by merely consuming a rich pastry, they slowly morphed into Beavis and Butthead, sitting there laughing at nothing. Somewhere around 10 PM they came down from that sugar high and passed out.

The boys' turkeys.
Matthias on the left.
Magnus on the right.

Craig's personal turkey.

My turkey.

Craig had to work Friday, so we just hung around the house making massive amounts of mashed potatoes and completing other prep work for the big meal the next day. Saturday arrived, and I finished my food contributions as Craig smoked the turkey. Yes. Craig smoked the turkey, and it was fantastic. He refurbished a smoker he got from a friend this summer, and I must say smoked turkey is the most delicious turkey I've ever had. I told Craig that is the only way we will ever prepare turkey in the future. So as Craig was creating this taste treat, I was making pie. Magnus and Matthias insisted on helping make the pumpkin pie, which was much appreciated. I love when they help me in the kitchen. It makes preparing anything more fun. Matthias was vibrating with excitement as he helped me measure out sugar and spices, and he squeaked (yes, squeaked) with happiness when I allowed him to help me with the electric beater. He walked around for the next hour exclaiming, "I can't wait to tell Grandma I made pumpkin pie!!!"

Craig's parents and his brother and his family arrived in the afternoon with their contributions to the meal, and Matthias immediately sought out Grandma to inform her of his culinary feat. We had a nice meal with the family. After helping make the pumpkin pie, I couldn't pay Magnus to eat some of it. He smelled the canned pumpkin and said he would never again eat something that smelled like that. He sort of grazed the dessert table, nibbling on homemade caramel corn and almond cake. Matthias was undeterred in his obsession and asked for pie after every single bite of his Thanksgiving meal. "Matthias, would you like turkey, potatoes, green beans, corn, or stuffing?" "I want pie." This was how most of the meal went. When he finally ate enough dinner to qualify for dessert, I dug into the pie for him. "Matthias, would you like apple or pumpkin pie?" "BOTH! please...WITH WHIPPED CREAM!!!" Again, he was vibrating with excitement. He dove into his pie with an impressive amount on enthusiasm and ate until his little belly was full. He waddled away from the table with a satisfied grin, found his Grandma, and finished the meal with a few snuggles.

So, an overall happy and successful Thanksgiving holiday for our little family. Now on to the next adventure.

Teaching My Kid to Give Me the Finger

2011-11-19T19:03:00.001-08:00

At the end of last week, Matthias' TVI charged me with a task...to help teach Matthias to isolate his fingers in order to help him participate in a circle time song that involved him counting on his fingers to three. In general, it seems Matthias has been less than cooperative over the last few weeks, but he is really resisting this task. I must say, I was super impressed his teacher shot me an email on this one. So often, professionals (especially ones who have been in their given trade for a while) refuse to ask for help, so I was impressed that his teacher is confident enough in her own skills to ask us to work on this at home. I think kids learn so much more when parents and teachers work together.

So really the purpose of the task isn't so much the silly circle time song but strengthening his control of his individual fingers. It is nice when he can participate in a class activity, but finger isolation, strength, and control are crucial for learning Braille, so that is really the point. Most of what Matthias does in school right now is honing his skills with his fingers and hands. Sighted kids learn print by seeing it over and over. Blind kids learn Braille by strengthening their hands, improving fine motor coordination, and recognizing and differentiating textures and shapes with their fingers.

My Father and I often discuss Matthias from an educational standpoint (remember, he's a Special Ed Teacher and therefore fascinated by Matthias' learning process), and we agree that the problem educating Matthias isn't his blindness but his intelligence. Matthias is phenomenally intelligent and often inadvertently thwarts our efforts to educate him. Throughout his journey with First Steps, we were constantly changing our goals and motivational tactics to keep him working. It seemed that every time we thought we found a way go keep him working, he would become uninterested in that particular reward. We tried all kinds of food, toys, songs, sounds, and even telling him he couldn't do something (he loves to argue and prove you wrong). Lots of things worked for a short time, but we struggled to stay ahead of him.

In addition to problems keeping him motivated, we also had issues with him getting bored. When Matthias gets bored he shuts down and won't work, which I suppose is probably true of most kids. He has always been a fast learner, and as soon as he gets a concept he becomes completely uninterested in it. He is always looking to move forward and learn more, which can be challenging when you are not yet sure what the next step should be. He is, after all, only three. He also has a rare and serious disability, so there is not really a definitive course of education for a kid in his position.

Even when he's not bored, though, he's difficult to motivate. First of all, it's difficult to help him understand the purpose of most tasks. For instance, We've been trying to teach him how to wash himself in the tub. He has no reference point, so the entire process is foreign to him. It has become a long process of teaching him where to find his scrubby, where we keep the soap, how to open the soap bottle, pouring the soap on the scrubby, lathering the soap, and then finally scrubbing his entire body with the scrubby. Most of these steps have been observed by a sighted three year old, and that sighted child has seen his dirty body become clean. This process of teaching him to clean himself is lengthier than teaching a sighted kid, but it is also difficult to teach him the point. He has not seen the dirt wash off of his body, so it takes lots of explanation and convincing that this whole process has a purpose. As a parent, you can make the process itself the reward, but we are often missing that component when teaching Matthias. The same can be said of this finger isolation task. For most kids, the point is simply imitating what they saw an adult do. Accomplishing the task is the reward. As I started to work with Matthias, it became evident that he really didn't understand this task. He also has very weak hands. He has never crawled, doesn't often color, and is still learning to use utensils at the table. Activities that naturally strengthen a child's hands and fingers aren't part of his world. It quickly became evident this was going to be more difficult than I anticipated. We needed to teach him to isolate the muscles necessary to control his fingers better, and we also needed to find a reason for him to learn this.

Of course, we often default to the usual little treats, songs, or TV shows. For instance, if Matthias moves at a reasonable pace through our morning routine we permit him to watch his favorite cartoon when he gets home from school. Since we are often "rewarding" behavior with him, we need to get creative, so we tend to leverage whatever his immediate obsession might be. For potty training, it was the vacuum. We would only let him use the vacuum when he peed or pooped in the potty. When we got the dog, he was scared of her, but he liked to give her biscuits (who the hell knows why...he's a three year old). So we only let him give her a biscuit if he would pet her for a second. We used these opportunities to show him her ears, tail, paws, nose, etc. so he would start to understand what a dog is, thereby lessening his fear of this unknown creature. To teach the kid this finger isolation, I am using my favorite reward thus far...the Emergency Alert System. Yes. That annoying TV interruption that beeps loudly and says "This is only a test." He, for whatever reason, LOVES to listen to it. And it's on YouTube. So we work on him counting to five on his fingers, sing the song from school, and then he gets to listen to the Emergency Alert System. He begs to do his "one, two, three fingers" and then giggles with glee when I tell him I will find the video on the computer. If he refuses to work with me, I won't play it for him. I do, however, need to stifle my own laughter when he makes up for it by reciting the entire Alert System test word for word, beeps and all, on his own.

So, for now we are working on finger isolation at home with an incredibly bizarre reward as his motivation. As expected, he's improving quickly. Within one week, he is already able to count (slowly) to two while isolating the index and middle fingers. Any day, I expect he will tire of the EAS, and I will need to seek out another motivator. I suppose I am building my personal skills and will be able to proudly declare "Professional Problem Solver" on my resume if and when I finally return to work.

Parent Teacher Conference, Halloween, and Three Year Olds

2011-11-09T11:24:00.000-08:00

K...I know it's been a few weeks since Halloween, but here's some catch up before Thanksgiving...

Just before Halloween we had Matthias' first Parent Teacher Conference. I walked into the classroom, and Matthias' teacher opened with "Your kid is hilarious." Now that's how I like any meeting to begin. Apparently that day during class, Matthias' Teacher of the Blind had whispered something in his ear which displeased him, and he had scowled quite entertainingly in response. Our discussion was relatively brief, but I learned that the teacher and her colleagues all enjoy Matthias and, as her opening statement indicated, find him entertaining. She told me she was a bit nervous at the beginning of the year that she wouldn't be able to meet Matthias's educational needs adequately, that he would miss out on much of what they do because preschool is primarily visual. However, she said everyone is a little surprised at how easily he finds enjoyment in classroom daily activities and how quickly he learns. She admitted she no longer has any reservations about teaching him in her classroom, which is great because she'll have him again next year. The only problem she indicated, which isn't so much of a problem as an annoyance, is his speed, or lack thereof. We have the same problem at home.

Matthias moves like a tree sloth. Have you ever seen a tree sloth? They are these funky monkey looking creatures that sleep most of the day away. When they are awake, which is rare, they move incredibly slowly. Craig and I once watched a tree sloth take about 15 minutes to move a foot over to another tree branch. It's not Matthias' fault; he doesn't have any visual cues to tell him how quickly people move about their daily lives. On his own, Matthias easily takes 10 minutes to travel from his room upstairs to the kitchen downstairs, a route that takes his brother about 10 seconds. I usher him through our morning routine like a maiden herding a stubborn goat through a bog in the hopes of getting him to the bus on time. Can you imagine, in the classroom, assigning Matthias as line leader? I had to laugh about that. Seriously, it's an opportunity you can't deprive him of, but it must drive everyone crazy when it's his turn. He knows the routes around school well enough to lead his classmates, but he doesn't understand that everyone around him naturally moves about ten times faster than he does.

We parted ways with the understanding that he's doing well, and hopefully his speed will improve over time. When I got home, though, I started thinking about it. This kid moves fast when he wants to; you should see him go to the table on pizza night. I tested the theory one morning, telling him he needed to earn his favorite cartoons by moving faster in the mornings getting ready for school. He was ready in record time. Poor kid didn't know, but that's the end of my little sloth. He is now expected to move faster at home. I give him countdowns to let him know how long it should take him to complete a task, like 10 seconds to walk down the hall or 20 minutes to eat breakfast. Of course, as soon as he learned it's now an expectation he started to fight it. We can deal with that, though. He simply moves faster to earn privileges. He's getting better, despite his best efforts to thwart our plan.

That takes us to Halloween. Sometime in September I asked the kids what they wanted for their costumes. Magnus wanted to be a spider, so Matthias shouted "I want to be a spider, too!" Magnus immediately changed his mind to a bat costume...specifically a black bat with blue wings and red ears. Matthias stuck to his first choice of spider, although I don't think he really knows what a spider is. I figured that was fine; perhaps this was our opportunity to teach him a little bit about spiders. I made the costumes. Magnus excitedly flew around the house, pretending to hang upside down and eat bugs. Matthias initially fought the costume thing until I informed him costumes are required to obtain candy on Halloween. That brought him on board.

We went to a local pumpkin patch to pick out two of our pumpkins, and Matthias' O&M instructor gave us two pumpkins from her garden. A couple of days before Halloween, we carved them. Honestly, Matthias would much rather have played catch with the pumpkins; he thought they were balls. He was pretty confused by the whole process of cutting them open, gutting them, and carving shapes in them, but he mostly went along with it. He wasn't all that into it most of it, but he loved dictating which shapes went where. He demanded three triangle eyes, a square nose, and a smiling pumpkin. Last year, I bought these colored pegs you hammer into the pumpkins to give Magnus (Captain Independence) the ability to completely design his own pumpkin, and Matthias enjoyed hammering these pegs into his pumpkin once I placed them. Magnus took his time carefully designing his pumpkin face on paper before transferring his design to the real thing. He did as much as safely possible by himself, refusing to allow Craig or I within three feet of his pumpkin unless a sharp knife and an adult were required. In those instances, we were under strict orders to cut in specific places.

On Halloween we got dressed and ready to go out Trick or Treating. Matthias started jumping up and down saying, "I'm a spider! I'm a spider!" over and over again. We talked a little bit about what a spider is, and he explained very calmly that he wanted to eat candy, not bugs. Magnus happily paraded around making his best bat noises, and Craig donned his exterminator costume while I put on my spider web outfit. We went out Trick or Treating in our neighborhood. It took approximately 20 minutes for Matthias to start asking to go home, which is to be expected of a 3 year old. However, we also have an enthusiastic 5 year old, and he wasn't going to head home until he had an inappropriate amount of sugar. We kept going, with Matthias continually complaining for the next 15 minutes or so. Then, inspiration hit me. I quickly handed Matthias a lollipop, his favorite, and I inadvertently created a monster. Every house after that, Matthias would say his obligatory "Trick or Treat," and "Thank you," and as we left every house he demanded "More houses!!!!" Oh goody. He caught on. He actually got a little hostile over candy toward the end, and he wanted to keep going even when Magnus was ready to quit.

We let the boys eat candy until they hit such an obnoxious level of sugared craziness that Craig and I were afraid we may need the assistance of my Step Mother, a former detox nurse. We sent them to bed later than usual, but they were still physically vibrating with sugary energy. I was happy to hear they wanted to wear their homemade costumes to bed, and Craig and I both happily honored this request. They continued to ask for candy every day until it was gone, and they dealt with the devastation of running out of Halloween candy gracefully. They were mildly upset about this loss of a daily candy fix until they learned Thanksgiving is rapidly approaching. My children love Thanksgiving and have severe addictions to pumpkin pie, but that's another story for another day.

Life's Exciting Little Ironies

2011-11-04T18:24:00.000-07:00

When we learned that Matthias was severely visually impaired and would probably eventually become blind, we went through several levels of emotion. In one of our finer moments, we saw the humor of the situation. When we were first dating Craig went to work for the Illinois Service Resource Center which is housed at the Center on Deafness just outside Chicago. One of Craig's friends and coworkers kindly helped us learn sign language. While neither of us was anywhere close to fluent, we enjoyed the lessons and learned quite a bit about the deaf world. One day right after Matthias' diagnosis I looked at Craig and said, "Dammit! We know sign language, not Braille. Why God Why?????" and we both started laughing.

Last year, I noticed that one of Magnus' schoolmates lives in our neighborhood. I wanted to talk to his mother and let her know we lived just around the corner, but I quickly observed that she and her husband are deaf. It has been about ten years since our sign language lessons, and I wasn't confident I could convey our message without mistaking a few signs and coming off as either an idiot or a stalker. I let it go. The kids were in different classes last year, so they didn't really know each other anyway.

This year, I was happy to see Magnus and this little boy in the same class, but I still struggled with my lack of confidence in my signing skills. I noticed Magnus and this little guy playing more and more, and we ran into them Trick or Treating on Halloween. Or more appropriately Magnus begged until we made sure to walk toward their house in an effort to run into them while Trick or Treating. I also noticed the kid's Mom had an awesome costume, and I was dying to tell her so. So I bit the bullet, swallowed my pride, and wrote her a note explaining myself and giving her my contact info. She immediately wrote back, requesting a play date for today.

Of course, I was both a little nervous about my ability to communicate with her effectively and entertained at the irony of our prospective friendship. I spent a little time before they arrived this afternoon brushing up on a few signs I was sure I would use, and we greeted our visitors. I really needn't have worried. Sarah is incredibly kind and patient. I think she was a little surprised that I knew any sign language at all, and she was very patient while I slowly signed whatever I could. I also had a pad of paper handy, so we wrote much of our conversation. She taught me a few signs I didn't know before, and she reminded me how much fun sign language is. It completely plays to my theatrical nature. I thoroughly enjoyed our visit, and the kids seemed to like it too.

The funniest part of the visit was when Matthias was trying to pass Sarah to go play with the other kids. He mistook her for me, tenderly climbed up on her lap, face fell, said "not Mommy" and made an incredibly fast descent from her lap followed by a sprint over to me.

She was naturally a little curious about Matthias, but she worked with blind kids in the past so she didn't have a lot of questions about blindness. I was delighted to learn she has a bit of a quirky, and maybe a bit dark, sense of humor kind of like me. I so often offend people with my jokes, and it is nice to meet someone who can play along. She found my story about Matthias' sign language shirt funny, which I think is a good sign. If you're not familiar, we found a shirt with sign language on our trip to FL. We found the shirt irresistible, since people are always asking if we know sign language.

On a serious note, there is something significant our families have in common. We are both primarily identified by a disability. They are the family with the deaf parents, and we are the family with the blind kid. While I think we both understand how and why we are often defined in this manner and don't mind too much, it can sometimes be a bit irritating and occasionally hurtful. We share the experience of being families that are a bit different, and that is a strong similarity.

I look forward to forming a friendship with this family, and of course I find it comical on several levels. I remember well cracking jokes with Craig about learning sign language only to have a blind kid. On another level entirely, I really look forward to chatting with her in the school pick up line, much, I'm sure, to the confusion of all the other Mommies. I'm absolutely having Matthias wear his sign language shirt on Monday. She told me that she is often asked if she knows Braille, and we laughed that people always ask if we know sign language. This friendship has such potential to confuse the hell out of people around us. I don't need that motivation to hang out with a cool family, but it is a nice bonus.

Molly

2011-11-02T18:03:00.000-07:00

Dragging our children across the country to a new environment is not nearly exciting enough for Craig and me, so upon our return from the deep south we went to pick up our new dog, Molly. We adopted her right before we left from a rescue organization called the Alliance for Responsible Pet Ownership (ARPO), and her foster family generously offered to keep her while we were in Florida. We picked her up on Thursday following our return home.

Magnus has been actively campaigning for a dog since he could talk. He loves animals and drags around a beat up old stuffed dog, aptly named Doggie. As I have mentioned before, he often pretends to be a dog, playing fetch, eating like a dog out of a bowl, and asking me to scratch behind his ears. He even built a doghouse out of cardboard that he used to sleep in occasionally. We attempted to get this kid a dog this past summer, but she showed concerning levels of aggression after we brought her home. After only one week we had to surrender her back to the local shelter. Craig and I have been carefully looking for another dog ever since, understanding that we needed to be more careful with our choice this time.

Matthias, on the other hand, hates animals. He likes animal noises and hearing descriptions of them, but he doesn't like to touch them, ride them, or be near them in any way. Real animals freak him out because they move unpredictably on their own. I understand this fear, but I refuse to indulge it. Our goal has become to help him overcome this fear and appreciate animals, even if he doesn't ever like them.

We decided that a family dog would be great for both kids. Magnus could finally have a dream come true with his very own real doggy friend, and Matthias would have constant access to a real animal and learn to have fun with her. We researched several rescue organizations and settled on ARPO. We liked that they are a foster organization instead of a shelter, and we figured they would know their animals a little better.

Over several weeks, we combed through their listing of available animals online and found a sweet little puppy. He was described as a middle of the road kind of dog you could play with or not, pet or not, kennel or not. That sounded like a dog that would fit in with us just fine. We went to see him at one of their adoption events, but he wasn't there. We had driven about 20 minutes, so we decided to meet the other dogs there that day. The last dog we met was a sweet little redhead with big pointy ears named Richie. She sweetly laid her head down and let the whole family pet her. Matthias even voluntarily reached out and pet her paw. Matthias usually requires some sort of bribery to pet an animal, so it was pretty significant he did this on his own. She reached over and kissed his little fingers, and Craig and I exchanged the look. We had found our dog. We decided to name her Molly.

We went through a relatively easy adoption process and picked her up a few days after returning from our trip. We are novice dog owners, so we have no idea what we are doing. We have had her for nearly two weeks now, and she is settling perfectly into our little home. She is mostly housebroken; if you get her out regularly there's no problem. She wouldn't go out without us at first, but she is starting to feel more confident in her surroundings. She is perfect with the kids. She tolerates Magnus' craziness and doesn't seem to mind him hanging on her all day. She loves Matthias and follows him everywhere, but she backs off when he tells her to "Stop bothering me, Molly!"

Magnus loves her more than he can handle. He wants so badly to be best friends with her, and he is still figuring out how. He grabs her ears, gets in her face and giggles, anything goofy and over the top to draw her attention. We are working on him being more gentle with her. Matthias was naturally terrified of her at first, shrinking away any time he sensed her in close proximity. We have slowly helped him warm up, mostly through the power of suggestion. She loves to give him little kisses, particularly on his cheeks, so whenever she does we say "Oh...She likes you so much. She loves to give you kisses." He likes this idea and is starting to call her to him for more kisses, particularly on his toes. We have also encouraged him to pet her. We've talked about her paws, ears, mouth, nose, fur, tail, etc. I think this is starting to take the mystery out of her. We've encouraged both boys to act as masters and be unafraid of her. She's a pretty small dog, but she's about their size. At first they were both a little timid around her, so we are teaching them to stand strong and give commands with purpose. They are both doing well, getting better every day.

There's one last little thing that is interesting about Molly. When ARPO first took her in, she was blind. She had a condition called Entropian, where the eye lashes are turned in instead of out. The lashes had caused lesions to form on her eyes, making it incredibly painful for her to open them. She had surgery to correct the condition, after which the lesions healed. She now has good vision again. As we were meeting her that first time, I noticed her right eye was a little droopy. That's how we found out about her medical history. I can't deny it endeared her to us. She's cute, but we have soft spots in our hearts for a pup with eye troubles.

So because our lives aren't complicated enough, we have added an extra member to our insane little world. She's cute and fuzzy, and she's settling in nicely.

Holiday Road

2011-11-02T11:02:00.000-07:00

Sea shell hunting on a cool morning

It seems to me, with my limited experience as a Mother, that kids pretty much hate everything new. That goes double for a blind kid who doesn't easily understand a new experience. It doesn't seem to matter if it is a new place, food, or experience. I need to fight my kids to help them understand the fun possibilities of the world around them. So far, it has been worth every bit of the fight.

Matthias having lunch on the balcony

One positive influence Matthias' blindness has had on our lives is it has inspired Craig and me to get the family out into the world as often as possible. For example, if you want to discuss a farm with a sighted kid you need only pick up one of about a million books about a farm and show them the pictures. Any kid would benefit from going to the farm as well, but it wouldn't be necessary to convey the gist of what a farm is. For Matthias, the only way to get him to understand a farm is to take him there numerous times. This goes for everything else, too. You can explain a beach, desert, mountains, etc, or you can take them there, let them decide for themselves what these things are, and teach them about the vast beauty that exists in this world.

It was along this line of thinking that we decided to start traveling. With Matthias healthy and the boys getting older, we started discussing taking the kids on some bigger trips. We started ambitiously with a trip to northern California to see my brother and his family earlier this year. The kids handled the challenges of traveling better than we could have hoped, and the experiences we all gained exceeded all expectations. We were inspired to do more.

Upon our return home, I asked Craig where he wanted to go next. We used to live in the panhandle of Florida, and Craig said he really wanted to go show the kids our old stomping grounds. That was an easy sell for me; I love the beach. We had actually been taking the kids to a tiny local beach all summer, so I was confident they would LOVE the ocean.

We decided to drive and get a condo at Fort Walton Beach, FL for the week preceding Magnus' birthday in October. As the vacation dates approached, we became increasingly nervous about keeping a blind three year old entertained for approximately 13 hours in the car. Magnus was no trouble with a DVD player and video games, but Matthias was going to be tricky. We decided to split up the trip into 2 days of driving each way to minimize everyone's misery. This turned out to be a good move. As soon as we told the kids we were going on a trip, both of them began a countdown to "hotel." As much as Craig and I hate staying in a hotel with our kids, that is how much they love staying the night at a hotel. They didn't care about going to the beach or seeing family; they just wanted to stay at a hotel.

Kids are an endless source of exciting surprises, so we shouldn't have been shocked that Magnus was the whiner in the car that first long day, not Matthias. Matthias kept himself largely entertained by listening to music on his MP3 player and Dr. Seuss books on his audio book reader. By the end of that first day, both kids were reciting Hop On Pop and The Cat in the Hat by memory. Magnus was great until the last two hours, when he decided to start whining and asking how much longer over and over. After threatening to feed him to David Lee Roth if he didn't stop whining and kicking my seat, he did a weird combination of laughing and crying until we arrived at our hotel in Fultondale, AL.

They loved the hotel, particularly the hot tub. Matthias once played with the jet in a hot tub and is now obsessed with them. He loves to swim, too, but I think hot tubs are his preference (smart boy). Magnus is part fish and loves anything that allows him to splash and swim around. We swam, went out for some local BBQ, and settled in for a miserable night's sleep. Craig slept with Magnus in one bed, and I slept with my little Mombie (Mom zombie) in the other bed. The next morning as a very grumpy Mom and Dad stumbled around the hotel room barking at the children, we discussed how our children flopped around all night. Magnus apparently beat Craig up all night in his sleep, kicking and punching his way through the early hours of the morning. Matthias was slightly more entertaining, but equally difficult to sleep with. Knowing his strong Mommy addiction, I started by snuggling him, but he made it clear he didn't want to sleep while cuddling, thank goodness. I carefully lifted him and placed him on the other side of the bed, kissing his little chubby cheek good night. Over the course of about 15 minutes he slowly migrated back to me, carefully lifted his hand onto my shoulder and face, and started petting me. Like a dog. I think at first he was just making sure I was still there, but I can't in any way explain the petting. I giggled, told him to go to sleep, and gently placed him on the other side of the bed again. We repeated this pattern all night long, except for my giggling and gentleness, which eventually morphed into whispered threats of him never dating and other such nonsense and me shoving him to the other side of the bed instead of "gently placing" him there. Somewhere around 4 AM I finally used some blankets and pillows to barricade him on the other side of the bed. He thankfully snuggled up against them and pet them for a while, giving me about one and a half to two hours of sleep.

Magnus' birthday
Matthias about to get naked
on the balcony

We got on the road early, very ready to get to the beach. We had a shorter drive that second day, and we were at the beach by lunchtime. We unloaded our significant amount of gear and dragged it up to the condo. We had a beach view condo, so we opened the doors wide and inhaled that fresh sea air. We started to unload, and I turned around to find a completely naked Matthias spinning in circles in the living room.
"Matthias. Why are you naked?" was the only thing I could think of to say.
"I want to go swimming!!!"
"Well....hmmmm...I don't know where you bathing suit is just now, so can you please put your clothes back on?"
"Nope."
So Matthias explored his new surroundings, found the balcony overlooking the Gulf, and then paraded around naked on the balcony while Craig and I unpacked, frantically trying to find that kid something to put on.

Wind, sand, waves...new experiences

We headed out to the beach as soon as possible with all of our beach gear in tow, but much to our dismay the winds were around 25 MPH and the waves were dangerously large. The waves were cool to watch, but within 30 seconds we were all blasted with wind and sand, throwing Matthias into a fit. Did I mention that it is hard to get kids to open up to new experiences? Well, when their first experience with something new is negative it makes convincing them to like something that much harder.

Magnus guiding his brother on the beach

We made a hasty retreat to the pool and hot tub. The pool was a little chilly, which didn't bother Magnus or Craig. Matthias and I, being creatures of comfort, headed to the hot tub, where a fine southern family was enjoying the warm water. Thus began our relationship with the family we came to call the Swiss Family Rednecks. As Matthias and I climbed into the warm water, Matthias giggled and caught the attention of a couple of adults and kids in and around the hot tub. It didn't take them long to notice there was something different about this kid, but they obviously couldn't put their finger on it. Every single one of them stopped their conversations and stared at us, mouths agape. I sat and played with Matthias and talked to my Mom, who was in FL with her husband as well, and tried to ignore them. I thought they would figure it out, like most people, and stop staring eventually. I was wrong. They stared at us the whole time. In fact, they did this every time they saw us the whole week, except Friday. They were blissfully gone by then. Whenever we were at the pool, on our balcony, at the beach, they stopped and stared, mouths open and all. And this was a large family having some sort of reunion, so it was about 15 people or so. The day after our initial encounter with them, one of the kids audibly whispered in front of Craig that Matthias didn't blink, and he said "He does blink, just not that often. He's blind." We were hoping this explanation would satiate them, but no such luck. The stares were constant all week long.

Craig discussing the finer
points of a beach sunset
with Matthias

Not knowing yet how comically annoying that family would eventually become, I dismissed them and had a nice time with Matthias and my Mom. We headed up to our condo to clean up and get ready for a little family get together. My Aunt and Uncle, as well as my cousin and her family were all in FL as well, and it was my Aunt's birthday. We went over to my Mom's condo for a little party. It was delightful to see our family, who hadn't seen us for a while. My Aunt and Uncle hadn't seen Magnus and Matthias in almost two years, and my cousin, Mary, had never met Matthias and hadn't seen Magnus since he was a baby. Mary's daughter Mia, about 8 months old, found my boys highly entertaining, especially when Magnus demanded I play a game of "fetch" in the middle of the party. Magnus loves to pretend to be a dog, and I indulge this on a frequent basis. Mia found it hilarious, as did the rest of the family, I think.

Craig and Magnus creating

The next day was windy with rough surf again, so we mostly played in and around the pool and hot tub. Magnus' birthday was going to be the day we were leaving, so we decided to celebrate that day. We pretty much let him pick whatever he wanted to do all day, culminating in a birthday party that evening. The whole family came over to our condo for dinner, games, and presents. Magnus clearly enjoyed the attention, which is so important since Matthias is often the one people focus on.

Matthias getting himself
some water to play with

The next few days were much better in terms of weather and surf. The winds finally calmed down, and we were able to get in some beach time. Matthias, of course, fought against the beach, thinking that the Gulf of Mexico is a giant sand blaster. We didn't give him a choice. He sat playing in the sand most of the time over the next few days. He mostly played with my Mom, scooping and dumping the sand, burying himself, etc. At first we got him buckets of water to play in, eventually making him go get the water himself. Those first few days there were tons of jellyfish close to shore, which made swimming with little ones difficult. Matthias was already convinced this beach was a sand blaster; the last thing we needed was for him to think the ocean is a horrible thing that stings and burns you. He did put his toes in the water to scoop it up into the bucket, and we talked about the gentle waves versus the big ones the previous day. He got mad at the waves touching his feet as he was trying to get out of the water, so I told him that was the Gulf's way of kissing him goodbye when he would leave the water's edge. He liked that and started saying it over and over every time he would get in and out of the water. I wouldn't say he liked the beach yet, but he was tolerating it more and more each day.

Craig and Magnus in the Gulf

Matthias finally liking the ocean

All of this time Magnus was purely enjoying himself. He and Craig and I were building sand castles, swimming in the Gulf, finding shells, etc. We went about our vacation whether Matthias was enjoying himself or not. If Matthias cried, we let him cry, telling him it was much more fun to play than cry. We have found that the sounds of our fun seem to warm Matthias up to a new situation better than anything else.

Playing in the waves

Our last full day was perfect, mid 70's, calm water, and our ever staring audience had left. Even the jellyfish were finally gone. We all enjoyed ourselves that day. Magnus and Craig grew gills and swam around the cool water all day. Matthias finally played in the water, kicking the small waves as I held him on my hip. Toward the end of the afternoon, Magnus, Matthias, and I sat on the shoreline and let the waves crash into us, shouting "BOOM" every time we caught a good one. Matthias loved this game, and he even protested leaving the beach.

Craig trying to get Matthias
to like swimming in the
Gulf of Mexico

After a long, fun week, we were all ready to head home. Our trip home was rather uneventful. We stayed midway again in a hotel. This time I slept with Magnus and Craig with Matthias, and while Matthias didn't pet Craig like he had me, neither adult got any decent sleep. We made good time home, and we were all happy to settle into our beds that night.

My kids have asked no less than 400 times since we've been home if we can go back. Matthias said he wants to go live at the condo, and Magnus asks constantly if we can go to the beach. All in all, it was an extremely successful vacation. We had to fight more than I thought to help Matthias learn about and enjoy the beach, but he came around. We found seashells, played in the sand, tasted salt on our lips from the water, ate seafood, built and destroyed sand castles, wasted money at tourist traps, and everything else you'd expect from a family beach vacation. Honestly, I have no idea what exactly Matthias thinks a beach is or if he really understands it, but we'll just have to go back often and find out.

Exposed

2011-09-25T18:19:00.000-07:00

Saturday was the Indiana Vision Expo, a gathering of the blind community, vendors, and support groups. We have never been to it before; we always figured it was mostly for the adult blind community and wouldn't be pertinent to us. We discussed going this year when we were mailed information about it, and we decided to go at the encouragement of Matthias' TVI. It was in downtown Indy, so we packed up the kids Saturday morning and went to the Expo.

The first table we found when we walked in was for a parents' group. I walked up, smiled, and said "Hey. That's us. We're parents of a blind kid." Have I ever mentioned I'm a dork? I could actually feel Craig shaking his head behind me. I struck up a conversation with one of the ladies running the table, and she was super nice. She informed me they have occasional gatherings in Indy, which obviously isn't an unreasonable hike for us. I mentioned that since Matthias attends public school it would be nice to be able to introduce him to some blind kids. That got us talking. She smiled and nodded, saying her daughter is ten and attends their local school as well. We found we have a lot in common in terms of attitudes toward our children and blindness, which is to say we are both stay at home moms who strive to help our children lead as normal lives as they can. It turns out that in addition to those commonalities, we also have childhood cancer in common, which was very unexpected. Her daughter had neuroblastoma and had had tumors all over her body. The tumors robbed her of all of her vision in her left eye and most of her vision in her right eye. I rarely have an opportunity to meet another mom who has seen both sides of our story, so that conversation made the trip completely worth it. But we were just beginning.

Our TVI told us to go to the Expo to "meet some blind people," which made us laugh. To be honest, we have only really met one blind person, and that was just once so far. I know that Matthias can lead an excellent life, but every time I read about or meet a normal, successful blind adult it reinforces that belief. Our TVI was right on, because this expo was full of absolutely awesome people.

We continued on and saw some really cool technology/products, everything from braille books to accessibility products for iPads and iPhones to kitchen gadgets. We met a gentleman who does old time radio shows, and we spoke with a blind gentleman about our age who sells assistive technology like money identifiers (feed the bill through it and it tells you what it is), Braille screen protectors for smart phones, and all kinds of cool stuff. We kind of just sat there looking at his products but also watching him. He had at least 3 potential clients all around him, and he was obviously listening to all of our conversations. He would occasionally interject comments like "You're holding that upside down. Flip it over," or "Yes. It's available online." It was cool how he was so on top of his game and answering everyone's questions all at once, without missing anything.

We rounded the corner to a table we all could've hung out at all day: the guide dog table. It was an organization in Michigan that pairs blind people with dogs and trains them to work together. They also do O&M training. Magnus and I made quick friends with a retired black lab named Sampson. He was a sweetie who could've sat there with us rubbing his ears all day. We then struck up a conversation with a blind woman who was there with her own dog. She was delightful, and had Craig not urged me on eventually, I would've talked to her all day. She was about my height and weight with brown hair and dark sunglasses and a warm, welcoming smile. She had a brutal honest air about her and we dove right into our conversation like two old friends. I asked her why she chose to get a dog, and she said the quick answer was she got sick of hitting her head on low hanging branches and other things her cane missed. Once she got the dog she found it opened her world socially. She found the white cane often pushed people away, making them too nervous to talk to her. But her dog did the opposite, drawing people in with friendly comments on the dog. We talked for a long time about the social implications of having a disability, which have become evident since Matthias started using his cane in public. We chatted about her getting used to working with her dog, all incredibly interesting. She gave us some friendly advice about parenting a blind kid (she had been blind since birth and knew a thing or two about it), and then we said an abrupt farewell when Matthias started chewing on my leg, begging to go home.

The kids by this time were getting a bit dicey. There wasn't a whole lot for them to do, so we tried to hurry our way through the rest of the vendors. The list of vendors, by the way, was extensive. I never imagined there were so many organizations ready to support this community. Every time we turned the corner, there were more tables full of helpful information. Of course, then I ran into one of the house mothers for the school for the blind and, much to the pain and suffering of the men in my family, struck up a conversation with her as well. She also had some fantastic advice and feedback, but I regrettably cut our conversation short. By now I was carrying Matthias who was repeatedly saying, "Stop talking. I want to go home." As he said this over and over he was head-butting my shoulder. I tried to check out a few more tables on my way out but Magnus dragged me away each time saying, "Momma. No." Maybe next year we'll leave the kids at home.

We left with all kinds of information about products and vendors that can help us in the future. We had been correct in our assessment that the Expo would mostly be for adults, but there were a few vendors for kids and parents. Also, Craig and I feel it is important for us to keep up on available technology for Matthias. He may not be able to effectively use it now, but the more we know about it the more we can give it to him when it becomes possible. We also try, whenever possible, to introduce him to technology in a fun way. For example, I help him play games on the computer all of the time. Just like his sighted peers, he learns a bit about using a mouse and keyboard as well as simple enjoyment of technology. We are trying to find ways to incorporate assistive devices into our play and are optimistic a few of the vendors we met may be able to help us. So while we don't need most of what we saw, we can start introducing him to these products to help him understand how to use them.

It was a hugely successful day. Matthias is always exhausted when we have been in crowded areas, and the constant physical and vocal attempts to deter me from adult conversation no doubt expended lots of energy. He took a great nap and allowed us to chat a little about what we had discovered at the Expo. We will be looking into many of the products we saw, and if nothing else the TVI was right. We met some incredibly cool blind people.

Friday Night Lights

2011-09-21T17:36:00.000-07:00

On Friday we had Matthias' first official IEP meeting since school started. School has only been in session for about a month, so it wasn't terribly exciting. It was clear, though, that everyone on his team enjoys him and believes he is in the right place. Everyone agrees he is very smart, a quick learner, and a well behaved little boy. It was a great beginning to a fun weekend.

Matthias' IEP meeting was to reevaluate and update school goals. His preschool teacher said he is doing very well, and the other kids in the classroom haven't really noticed that he's blind. He is getting around the classroom just fine on his own, and he is equally competent finding his way down the school hallways with his classmates. She told us she has been repeatedly stopped by other teachers and staff complimenting him on his ability to navigate the school. His TVI (Teacher of the Visually Impaired) reported that he is doing well with her. Matthias was at the meeting with us and was sitting on the floor playing while we talked. Numerous times during the meeting he would say, "Hey Bennett?" She would reply, "Yes, Buddy?" He would ask various questions, mostly "Where are you?" It was incredibly cute and pretty funny. His Occupational Therapist (OT) had a chuckle with us over his reluctance to work with her. He is, after all, three and therefore stubborn. We discussed what might motivate him to work: food, music, and vacuuming. Of course, the vacuuming required a bit of an explanation and resulted in some chuckles. Matthias backed us up immediately by excitedly asking his OT if she had a dust buster. She replied in the affirmative, and we agreed that OT would probably go much better in the future. We also met Matthias' new Orientation and Mobility Specialist. She had only met with Matthias once, so she was mostly still in information gathering mode. Matthias got a good report from everyone involved, and we were happy that his entire team remains completely supportive of our decision to send him to a regular school. They are all also confident that they can help him thrive in a regular school. It was a good way to start the weekend.

We headed home after the meeting to get ready to head to my older brother's house for the weekend. He lives about three hours from us and has five children ranging in age from sixteen to four. My kids love going there. Matthias in particular has been asking to go there since our last trip at the beginning of the summer. We managed to keep the kids entertained for the long drive, and we arrived just in time for dinner. After a quick meal, we headed to my nephew's football game. Neither of my kids had ever been to a game, and they loved it. Magnus was clearly entertained by the marching band, the bright lights, the game itself, and playing with his four year old cousin. I wasn't sure what Matthias would like, if anything, so I described what was going on around us, hoping he would show interest in something. He thoroughly enjoyed banging his cane on the metal bleachers. As if we weren't drawing enough attention walking a blind three year old through the stands, he needed to clang as loud as he could in case somebody hadn't noticed him. He was banging his cane, laughing hysterically at the metallic reverberation. I looked up to see all eyes on us and was thankful when attention was returned to the field as a play began. He loved the band, of course, but the surprising favorite was my description of the game itself. I was quietly describing each play in a very basic way. "The teams are lining up across from each other. The Center snaps the ball to the Quarterback. The Quarterback gives the ball to a teammate. He's running. And they tackled him to the ground." He giggled and squealed at my descriptions, mostly listening for me to tell him the QB had thrown the ball. He'd yell, "Did he catch it??????" He was, of course, particularly excited when they did, clapping and cheering as loudly as his little voice would allow.

After the game, we headed back to my brother's house to crash. That night he slept in a tent on an air mattress for the first time. Magnus has a set for when we travel, and Matthias has been asking for the same thing for several months. We finally went out and bought him his own, and he was just as excited to sleep in his own tent as he had been listening to the game. He fell asleep almost instantly with a huge smile on his face. I heard him laughing in his sleep about an hour later.

The next day was a full one. In a house with five children plus our two, you wake up on the move. After a late night, we were up at 7 and out the door by 9:30. We first went to my nephew's JV football game. Yep. Another one. Matthias was slightly less enthusiastic, but he seemed to enjoy himself just the same. Magnus was also pretty excited, especially when his cousin pointed to the stands after leveling some poor opposing player. It was clear by the end of the game that my kids were pretty tired, but our day was just beginning. My niece was playing in a volleyball tournament across town. So we caught a quick lunch and headed over to watch her play.

The change of environment was dramatic. We were now sitting in the stands of a hot gymnasium listening to teenage girls cheer and jeer their volleyball feats. It was a little harder to describe what was going on, but I did what I could. He liked the booming sound of the ball being passed from player to player, and we all found the players' commentary on the court entertaining. Matthias entertained himself by repeatedly cheering "Go Cleo!" which she later told me she heard on the court.

After the game we headed back to my brother's house, where the kids all played together. My brother's kids are all really good, smart kids, and they play really well with my kids. I'm always amazed how seamlessly my kids seem to fit into their house. They played video games together, including Matthias whenever possible. They played Hide and Seek, Magnus' current favorite. For a while Matthias was just standing in the middle of the space with a huge smile on his face saying, "I'm hiding." Whoever was It would just walk out and say, "Found you, Matthias," like it wasn't unusual at all that he was in the wide open. Eventually, the older kids started helping him hide with them. Somehow this game turned into a Zombie Hide and Seek game. I guess whoever was It was a zombie who found the other kids who then ganged up on him and pretended to attack him. At one point I heard my husband cheering "Sever the spinal cord! Sever the spinal cord!" It was very strange, and it resulted in Matthias calling my oldest nephew "Zombie" for the rest of the evening. Whenever he wanted his attention, he would say "Hey Zombie!" which was answered with a grunt or groan and an amused grin. I'm not really sure he remembers his cousin's real name. Anyway, Magnus and Matthias had a blast with my nieces and nephews. I think they view my brother's house as a sort of wonderland. There are toys everywhere and always someone to play with.

We ended the evening roasting marshmallows in the back yard. Mostly, Matthias just ate regular marshmallows. He doesn't really care for roasted ones. He sat on my lap by the fire as I quietly handed him marshmallows and sang to him. In a quiet moment between songs he said, "Look what I hear," which is his new way lately of asking you to identify what he is hearing. I listened for a minute and heard tree frogs in the trees behind the yard. "You mean that?" I asked. "Is it ducks?" he said. I admitted that while it sounded a bit like ducks those were little tree frogs no bigger than his fist. He found that incredibly funny and fell into a fit of giggles every time a frog made a noise after that. About fifteen minutes later the frogs ceased their comical serenade, and Matthias fell quiet, snuggling into me and occasionally asking me to identify other sounds he was hearing.

He happily slept in his tent again and was enamored of his uncle in the morning as he made waffles for the family. Matthias can easily be bought with something smothered in syrup. We packed up and headed home, exhausted but happy with a successful weekend.

Staring at the Son

2011-09-11T18:25:00.000-07:00

Ever since Matthias started using his cane, we have become like little celebrities. People stare at him everywhere we go. It is annoying, but understandable. I rarely see blind people in public (and I would notice), much less a blind 3 year old using a long white cane, and I know people are just interested in this rare anomaly. They are unaware that everyone around them is also staring, making us feel like a little bit of a display.

It's always interesting, and sometimes funny, to watch how people handle their staring. They know they shouldn't, so most people use some sort of tactic. Moms and older people tend to use the "I'm staring, but I'm smiling in an appreciative way so it's OK" tactic. Lots of people use the "I'm facing the other way and looking out of the corner of my eye so nobody notices" technique. All kids outright stare, which is fine, but I'm always amazed by the adults that make no effort to try to conceal their gawks. Some of them even bend over and try to look in his eyes. Some people try to make their long gazes less awkward by asking incredibly personal questions, a tactic I wouldn't recommend. If you are a stranger to us, you really don't want to hear about his battle with childhood cancer while we are waiting to purchase our groceries, do you? My personal favorite, by a long shot, is the easygoing middle aged dads who get super excited about seeing a blind preschooler and can't contain themselves so they start cheering for him. You'd think this is rare, but whenever we are in a crowd you can count on 3-5 of these guys saying "Great job little man!" or "Way to go dude!" as Matthias slowly passes by. These guys always crack me up.

Most days, I either ignore the constant stares or embrace them, but it is always a relief to escape them. The last two days have been perfect outdoors weather, so we've tried to get outside as much as possible. It has been a perfect time for Magnus to practice riding his bike. He recently requested we remove his training wheels so he can try riding like a big boy. After much debate, we told him we would do it with the understanding that they would stay off permanently. He was not going to be permitted to give up, and it was going to be hard work. Magnus is still only four years old, and he falls over and hurts himself standing still. He enthusiastically agreed, and we have held our breaths while watching him work on acquiring this coveted skill. We decided yesterday to take him to a local park with lots of biking trails for a change of scenery, hoping it would inspire him to keep working. We also brought Matthias' tricycle, which meant he wouldn't need his cane and we wouldn't need to deal with staring. A nice, calm family adventure. Ahhhhhh...

We arrived at the park, and Magnus attacked his bike with excited determination. He had learned to get a balanced fast start, but once that second foot came off the ground he would freak out and wobble and put his feet down. Most of his challenge involved learning to trust himself. As he was peddling down the path, we were passing all kinds of people, bikers, dog walkers, kids, skaters, etc. Everyone of them stopped to watch Magnus. I chuckled out loud as I realized that my minor exultation at having a family outing under the radar of the general public had now transitioned to one with people staring at the other kid. It was great, though. People were all watching and cheering him on. Lots of people asked him questions, or asked us questions about how long he had been working on riding his bike. Not one person asked about Matthias, who was cautiously peddling his tricycle about 15 feet behind his brother. Matthias' tricycle has a large handle on the back, and nobody noticed Craig steering for him as we trekked our way down the trail. Magnus had the pure joy of accomplishing something on his own, with lots of outside encouragement, and nobody asked about his little brother.

Today Magnus rode half way around our neighborhood retention pond completely unassisted. I think our trip to the park yesterday boosted his confidence and heightened his desire to master riding his bike. Ironically, I owe a thanks to all of our friendly gawking cheerleaders at the park yesterday. I think their encouraging looks helped Magnus learn to ride his bike. Not to be outdone, Matthias independently pedaled his little heart out all along the pond as well. Now to work on steering. Now THAT will be something to watch.

Sweating the Small Stuff

2011-09-07T19:13:00.000-07:00

My Step Mother, Pat, recently requested I write a post about the things that are hard to teach Matthias. So here you go, Pat.

We are not by any stretch revolutionary. Blindness is nothing new, and there are proven techniques to help blind kids find their way. You can find entire articles dedicated to orientation and mobility (finding his way around), potty training, Braille readiness, eating, etc. There are dozens of techniques for all of these big topics, so you can pick and choose what will work for you. The hardest things to teach Matthias haven't been big things, like walking or dressing himself or potty training. The big ones have all come pretty easily, because he desires to do them. The hard ones are always the stupid little things that seem so pointless, but he needs to learn them as part of daily life.

We had a huge breakthrough this week when Matthias FINALLY spit his toothpaste in the sink. That's right; that was HUGE in our house. We have been trying to teach him this for almost a year. Think about it, though. He couldn't see us doing it, and it's really hard to explain in preschooler terms what you do. You need to teach him not to swallow and to push the toothpaste out of his mouth. We tried all kinds of things, even having him put his hand on my mouth as I spit into the sink so he could feel what was going on (a process he found hilarious by the way...And it wasn't just a little giggle...he was in hysterics) At about the six month mark, he started swallowing his toothpaste and water and then making a spitting noise, which he also found funny. He found it even funnier when I would try to correct him. It is quite possible this has been the most frustrating skill to teach him in the last three years. This week, however, when I was about ready to lose it, he finally spit his water in the sink. I couldn't believe my eyes. The next day he spit his toothpaste in the sink, too. He said "Did I do it?????" And I said "Yes. You finally did it." He was so excited. Magnus cheered for him. It was like he just climbed a mountain or something, and all he did was spit out his stinking toothpaste.

Another annoying little important skill has been getting soap from a pump dispenser. Let's be honest; he loves to push the pump down. He does not, however, understand how to put his hand underneath to catch the soap. This is another one we have been working on for over 6 months. We've shown him repeatedly where the hole is on the pump and how to hold his hand, but no matter how many times I show him he will not do it on his own. I don't know if he doesn't understand or if he's trying to drive me nuts, probably the latter. Sometimes I thinks he's just messing with me for his own amusement.

The last skill that immediately comes to mind is bumpers. This is a common technique blind children use when moving about a space to protect their faces and groins. You put one hand a few inches in front of your face and the other in front of your belly/groin so if you find an unexpected obstacle you do so with your hand instead of a more sensitive body part. We have been working on bumpers around the house since he started walking. For a solid year, he just flat out refused to do it. We worked on it all of the time, but whenever I would show him what to do he would say no and eventually dissolve into tears. After arguing with our little mule for an entire year, Craig and I decided to take another tactic. We let him start bonking into things, thinking eventually he would get sick of hurting himself. Before you go and call CPS, Matthias moves incredibly slowly so he's never going fast enough to hurt himself. He just gets mad and frustrated when he bumps his head all day. Every time he would "bonk," as we call it, we would say "should've used your bumpers...they keep you safe." Eventually he started slowing down when I would warn him he needed bumpers. He didn't really use the correct technique, but he would wave his arms around and find his obstacle. He is getting to a point now where he will throw his arms in the air if you say, "Bumpers...you're going to bonk," but he's not effective in his placement. He kind of waves his hands around in the air like he's hailing a cab instead of protecting his face. He is apparently not concerned for his nether-regions at this time, because he never protects them. We just correct him frequently without much argument, figuring natural consequences will teach him this one eventually.

There are also some things that are a little more obvious; I can understand why it's hard for him to comprehend certain skills. Self feeding with utensils is tough because he doesn't understand level. Getting dressed can be challenging; he often puts clothes on backwards. We've shown him to feel for the tag, and he can usually find it. He just doesn't understand yet how to make sure the tag actually goes to his back. He doesn't understand running. If you tell him to walk fast or move fast, he just taps his feet back and forth in rapid succession; he doesn't move forward fast. I used to run with him on my back, so if you tell him to run he jumps up and down (the sensation he had on my back when I was running).

So far, blindness isn't devastating; it's just really inconvenient. Everything takes extra time to teach him, but we don't mind too much. Craig and I are pretty patient, and we have a sense of humor. We also know how to get creative when necessary. Of course, we get frustrated from time to time, but no more so than we did when teaching Magnus.

New Friends

2011-09-03T18:53:00.000-07:00

Last Spring we met a nice couple at a conference we attended, and we have been trying to get together ever since. Busy lives on both sides of the equation prevented our getting together again until this past Thursday night. We finally connected at a pizza joint in Indy, ate some very decent Chicago style pizza, and got to know them.

Our new friends are a relatively newly wed couple about our age; they married about two years ago. He is a lawyer in Indy, mostly handling employment grievances. He has his own practice which he runs out of his house. She has been helping him get the practice going and also watches a baby for a friend. They are a smart, funny, entertaining couple, and we enjoyed every minute of our time together. Oh, and the husband is a blind retinoblastoma survivor.

We saw him speak at the annual conference for parents of blind children at ISBVI. His speech was very candid and interesting, and we particularly enjoyed the information he shared about the technology he uses in his daily life. After his speech, we approached him and his parents. Craig and I occasionally connect with other retinoblastoma parents, but bilateral retinoblastoma is incredibly rare. Blind bilateral retinoblastoma survivors are even rarer. We mostly meet unilateral retinoblastoma (cancer in one eye) parents, which is always helpful but not quite the same. We jumped at the opportunity to meet this family. Craig and I felt an immediate connection with these people, and the conversation was cut much shorter than we would have liked. We gladly accepted his card and thanked them for their time.

We finally got a date and time together that worked for everyone and headed to Indy. It is always awkward to get to know someone from scratch, especially when the commonality that brought you together in the first place is debilitating cancer. To make it easier, we brought the kids with us (yes...you detect a bit of sarcasm there...babysitters are expensive). We entered the restaurant full of nervous energy and hopes that this meeting would go well. Conversation again came easy, and we covered topics all over the place. I think the best part of the dinner was that blindness came up here and there, but it was not at all the focus of our conversation. We discussed very normal topics...careers, kids, music, traveling. Whenever a blind issue came up, it seemed to do so as a normal part of one of these topics. They were curious about Matthias and asked a few questions, mostly about how he was diagnosed and how school was going. They seemed pretty happy we had brought the kids, who consequently behaved very well given the setting. At the conference he mentioned they were wanting to start a family, so I think they enjoyed chatting with a couple of young kids.

The other cool part of meeting this couple is that within minutes I didn't even think about the fact that this man was blind. In fact, I wouldn't put it in the top 10 cool or interesting things about them as a couple. They are both smart, funny, have fascinating life stories, and seem like honest and good people. Most people hear "blind" and really can only relate to exceptional blind people they have heard of like Ray Charles or Helen Keller. Until I had Matthias, I had met one blind woman in my entire life. Craig had never met anyone who was blind or visually impaired, so we understand that it is natural to gravitate toward these icons. Most blind people, though, are normal people who happen to be blind. I know so many people who love Matthias are watching for him to do exceptional things, but this man is exactly the type of person I hope Matthias will become: a perfectly capable, smart, and normal guy.

We parted ways amicably, with a mutual hope that we can do it again soon. They really are an interesting couple. Of course, I see the practical value we hold for each other. Craig and I have very recent experience with a cancer our friend doesn't even remember facing, and he holds a world of knowledge about living as a blind person that we need to help our son. Honestly, I think we would love to hear more about the assistive devices he uses in his daily life, see him use his cane, and so on, but I am much more interested in hearing about the progress on the renovations of their house and the evolution of his law practice. Hopefully we'll have many opportunities to cover a wealth of topics.

My Hero

2011-08-30T17:45:00.000-07:00

Actors, sports stars, musicians, politicians...all of them always seem to top the list of heros whether they deserve it or not. It's funny how Matthias has redefined so many things, including the definition of a hero. Today I met my new hero, or more appropriately my heroes.

Matthias' birthday was a few weeks ago, but we decided to celebrate it at school today. Magnus is still not in school yet, so he accompanied me. We bought one of those giant frosted chocolate chip cookies (the frosting really cuts the sweetness of the cookie, don't you think?), some fire truck plates and napkins, fire truck stickers, and some party horns and went over to the school uncertain of what to expect.

I had never been in Matthias' classroom before, at least not since school officially started. All I knew was it has a bunch of 3 and 4 year olds with IEP's (individual education plans, meaning they have some sort of special need). A kid could have an IEP for numerous reasons. The night of the open house before school started, the parents present were all chatting about why their kids were there. Craig and I later joked that it was like prisoners discussing "What are you in for?" At this young age, I know most of them are not yet diagnosed. Many disorders, as I understand it, are too difficult to pinpoint in a 3 year old. They look for red flags, and those red flags help educators determine educational plans for these young kids. Some of them will catch up to their peers, and many of them will continue to need some degree of assistance.

We walked in, not really sure what to expect. The kids were wrapping up circle time and getting cleaned up for snack time. I have been in Magnus' preschool classroom several times, and I found it to be extremely similar to his class. There were a few quiet kids, a few rowdy kids, some kids listening, some not. There is one teacher and two teacher aides, and it was pretty easy to see each had a different role. One of the aides was the quiet mothering type, and the other aide was the fun boisterous one (reminded me a little of my Dad). Mrs. Boisterous had an easy smile and immediately greeted us as we entered the classroom. She was guiding Matthias from the bathroom area to the snack/activity tables. She had one of those joyful voices that always seemed to carry above all others, even when she was whispering, and she made me smile. She guided him so easily, like she had been doing it forever. When she completed her task, she immediately turned around and assisted the other children with whatever they needed. Mrs. Mama made her entrance a few minutes later; she had been helping a kid in the bathroom. I was interested to meet her; Matthias talks about her all of the time. She glided gracefully from child to child in the room, putting out fires quicker than I could find them. The teacher was quietly and confidently running the show; there is nothing this woman hasn't seen in her years of teaching.

I was just sitting there in awe. These ladies were totally in control of this classroom, and they worked together so well it was like they were using telepathy. Each one knew their role, what was needed, where it was needed, and took care of it. One kid started crying uncontrollably, and Mrs. Mama scooped him up into her lap and started quietly stroking his face to calm him. Mrs. Boisterous was swooping around the room cleaning up the other giggling kids and getting them to their seats. The teacher was orchestrating it all, somehow helping me get the treats ready and managing to cut long pieces of paper for the art project they were going to do after snack time.

The kids all enjoyed their little treats, and when they were finished the teachers were again in motion getting everyone cleaned up and ready for the next task. I blinked, and the kids were all finished, cleaned up, and ready for art time. Before we left, I handed out the party horns for each kid, thinking Matthias would like the sounds of all of the horns going off. The kids went berserk, in a good way. They were all laughing and blowing their horns and having a blast. That was $3 well spent. I was starting to feel bad, not sure how the teachers were now going to reel these sugared up crazy kids back in for art time, when Mrs. Boisterous simply said "OK. Three more times and then we are going to put them away. One. Two. Three. OK go put them in your backpacks." And the kids were off. Each one went to his or her locker and put away their little horn.

I kissed my little guy goodbye and left, knowing that my son was in extremely capable hands. These women were awesome. You can figure that a person who WANTS to work with preschoolers with special needs is pretty cool, but these ladies completely exceeded my expectations. Can you imagine sitting there, trying to figure out which career would suit you and coming to the conclusion that a normal classroom of preschoolers is not enough of a challenge for you? You want an entire classroom full of preschoolers with special needs? I wasn't sure if I was going to need to hug them or give them a psychological evaluation. After hanging out with them for a while, I know they simply love what they do, and I love them for it.

Keeping in mind that many people I love are educators in some fashion, I am convinced that teachers are heros. Anyone who chooses a career where they are responsible for the education of an army of kids is pretty awesome. Add an extra star behind the name of any individual who decides to take on special needs kids.

As a sort of postscript to this subject matter, I recently ran across an article on the National Federation of the Blind's web site regarding educating blind children in a regular classroom. It is a fantastic article for anyone in education or any parent raising a disabled child, particularly one who is visually impaired or blind.

Blind Child in the Regular Elementary Classroom

Show Off

2011-08-24T18:37:00.000-07:00

Every once in a while, Matthias decides he's just going to show off. Today was one of those days. It was the third day of school, so I went to wake him up around 6:45. I scooped him up out of bed and carried him downstairs to wake up a little bit before breakfast. I should've known it was going to be an interesting day. Matthias is not a morning kid and usually takes a little while to wake up, but this morning he was ready to go.

I made him eggs, toast, and fresh strawberries for breakfast, and he gobbled up the strawberries before the eggs hit the plate. He asked for more, but I told him he needed to finish his eggs and toast first. A few minutes later he said, "Mama, I requested more strawberries." Craig was sitting across from him enjoying his breakfast, and he froze, cocked his head, and said, "did he just say 'requested'?" Yep; he did. We both chuckled, shaking our heads, and explained again that he needed to eat the rest of his food. He does this every now and then; he just suddenly and correctly uses a word unusual for a 3 year old that he has never said before.

I got him ready for school, and the bus driver and aide were again shaking their heads as this little blind 3 year old pulled himself onto the bus. There was a lot of head shaking going on today. When they dropped him off again after school, they were again shaking their heads and saying over and over how smart he is. "He's our boy, for sure," they said. Yesterday, the driver told me as he dropped Matthias off "That kid is going to be running this bus by the end of the year." I don't know what is happening on that bus every day, but they seem to be enjoying our kid.

Later in the afternoon we were sitting around the table having a little snack. Magnus finished his in record time so he could play for a little while before swim lessons. When Matthias heard Magnus playing he said, "May I please be excused from the table so that I can play with my brother? You need to clean me up first." Ummmmmm...sure. I complimented him on his manners and shook my head a little bit.

The kids played nicely for about 5 minutes before they got in trouble. Matthias always has trouble keeping his little hands to himself and is pretty frequently in trouble for it lately. Magnus has been a perfect little angel during our time together in the mornings and an unbelievable little imp in the afternoons. Can anyone say jealousy? I can't wait for his school to start to equal things out a little bit. Anyway, Matthias got a time out on the stairs, and Magnus got sent to his room. After a few minutes, I put Matthias's bathing suit on the stair next to him and asked him to put it on while I went to talk to Magnus. I wasn't sure if he could/would accomplish this task in my absence, but I didn't see the harm in letting him try. A few minutes into my discussion with Magnus about why acting like a lunatic is not in his best interests, Matthias shouted up the stairs "Can I go put my water shoes on?" "Sure. They're in the laundry room," I replied, pretty certain I was going to return downstairs to find a naked kid happily wandering around the foyer.

When I felt confident I had bored Magnus to death with my lecture, I went downstairs and found a pile of socks, shorts, and underwear. Matthias came around the corner of the kitchen in his water shoes and bathing suit. The bathing suit was even on the right way. I'll be damned. This is about the fourth time he has located his shoes and put them on by himself. They were on the wrong feet, but I'll take it. This was the first time he had put on his bathing suit totally by himself; he usually gets his feet stuck in the lining. He said, "I'm ready." I guess so.

Did it end there? Of course not. We have been in swim lessons for a little over a year and a half. At first Matthias and I were in a Mommy and Me baby class together, and when he was obviously bored with that we put him in the next level up. They have a special ed instructor who works one on one, but we have insisted that until it becomes necessary he should remain in a normal class. So far so good. He holds his own in a class where all of the other kids are at least 6 months older than him. We arrived to find his name on a list of kids who have been promoted to the next level. I, again, found myself shaking my head. Did I mention he is the youngest in his class, and he has been promoted to the next level?

He ended the day by inhaling a Ding Dong and then sitting perfectly still while I cut his hair with clippers. At the end of the haircut he smiled and said "I'm handsome." I'm not really sure what has gotten into him, but it made for an incredibly interesting day.

And So It Begins...

2011-08-22T17:52:00.000-07:00

Matthias got on the bus at 8 AM for his first day of school today. Was I nervous? Scared? Sad? Did I cry? Hell no, it was fabulous! I've had this kid all to myself for 3 years, and now it is time to release him upon the world, or at least our local elementary school.

We spent last week orienting Matthias to the school. Last Monday evening, we went to an open house to meet his teacher, a few students, and see the classroom. It was nice, and weirdly enough we are acquainted with one of his classmates already. They were in swim lessons together as babies. We went back Wednesday, Thursday, and Friday for about an hour each day to familiarize Matthias with the layout of the classroom. It was awesome because we got to spend some time figuring out how to get around, and we got to talk to the preschool teacher. Matthias's TVI (Teacher of the Visually Impaired), Nancy, was there on Friday and helped us as well.

Today was the big day, and we were out in the driveway waiting when the bus pulled around the corner promptly at 8. Matthias was happy and giggling until the bus pulled up to the curb. I had been telling him he was not allowed to have any fun today, and he was happy to tell me no way. Buses are pretty loud, and he has never been in close proximity to one. As soon as the bus pulled up, Matthias froze and tucked his head down. That means he's scared. I told him it was OK and helped him find the first stair and the hand railing. He did the rest on his own, with a very pleased and surprised bus driver and aide looking on. I gave him a kiss goodbye and stepped back. I could tell he was stiff and afraid, and I had trouble resisting the urge to help him. I think all Moms want to instantly help when they see their child struggling with something, but I also think coping skills are probably the most important skill for kids to learn. It is difficult to watch him nervously climb the stairs onto a super loud contraption that he has never experienced before, but he needs to know that he can trust the driver, the aide, and himself. My interference would have prevented that. I held my breath, successfully resisted the urge to "help," and watched that bright yellow school bus carry Matthias to his new adventure.

The rest of the morning was strangely delightful. It was strange to be in the house, just Magnus and me. It was delightful to be in the house, just Magnus and me. I can't remember the last time we played and had a good time without Matthias, and it was kind of nice to focus all of my energy on him for a little while. He liked it, too. We went to the store to get school supplies, played trains, played with Matthias's birthday presents, and painted together. At one point, a neighborhood friend came to the door, and Magnus said he didn't want to go outside because we were playing. I felt a little bad for the little guy, but I was pretty excited that Magnus wanted to play with me. About 15 minutes before Matthias was scheduled to return home Magnus said "I miss him." I think it was one of those moments when you say something you are thinking out loud without realizing it. It was sweet.

Matthias returned promptly at noon, and he was all smiles when he heard my voice. I hopped up on the bus this time and asked if he was the last kid on the bus. After the driver, Larry, answered in the affirmative, I asked if we could take a minute to walk around the bus and show Matthias what this big thing was. He said that would be fine, and we took a few minutes to do it. When we were finished, I talked to the driver and his aide for another minute or two. They are in their late 60's or early 70's, married, and really kind people. The wife takes care of the kids while the husband drives. They are proud grandparents of 13 grandkids, and it turns out one of their granddaughters went to camp with Matthias this past summer. The wife told me she was incredibly impressed that Matthias was able to climb on the bus all by himself with no tears. She said that really doesn't happen too often. Many of their kids can't physically get on the bus alone, and some have never been away from Mom and won't get on by themselves. They said Matthias did very well on both rides and didn't seem at all upset. Larry said Matthias recognized his voice right away without help when they were loading the bus to come home.

Matthias had a great first day and is excited to go back tomorrow. He said he played "Wheels on the Bus", made a Froot Loop necklace, and played with Play Doh today. He even named a few of his classmates when I asked him if he met new friends. Magnus and I had a blast together and are already making plans for tomorrow. It was a good day.

Happy Birthday!

2011-08-20T18:11:00.000-07:00

It is always interesting trying to adapt a special occasion to appeal to Matthias, and birthdays are no exception. It's not difficult to create an experience that Matthias will enjoy, but it does take a little thought. I've been planning for several weeks, and we had a spectacular day.

My In-Laws came in last night to celebrate with us, so Matthias was already excited for the day. We started with Matthias's favorite breakfast, blueberry pancakes. The first thing he asked for (demanded) this morning was his blueberry pancakes, so thankfully I was prepared. He ate until we thought he was going to burst, and then he ate some more. He ended the meal covered in blueberries and syrup and happy as could be.

Most of the summer we have been going to a little local beach, and it was the only place Matthias wanted to go today. He loves everything about the beach...swimming, covering himself with sand, splashing, and having a picnic. I think I checked the web site every day this week, a little paranoid that for some reason it would be closed today. Imagine my instant distress when we arrived to find the doors closed and the gate locked. Are you kidding me? Three year olds don't handle disappointment well, and neither do 34 year old mothers. I decided to walk around to the fence to see if there was anybody there at all, and a young woman came around the corner. She explained that the beach was closed because several lifeguards didn't show up today. That pissed me off. They were not able to open unless they had 6 lifeguards present. With a heavy heart I went back to the car to make Matthias cry and work with Craig to figure out an alternative.

As I was searching the Internet on my phone for somewhere else to swim, another young woman came out to speak with us. I admit I was pretty irritated and a little emotional at this point, and I was rather sassy with her. She was explaining again that they were too short staffed to open because several people didn't show up for work today. I told her she should call every one of them and explain that their lack of responsibility trashed our birthday plans for a 3 year old blind cancer survivor. I know...I know... I honestly don't pull the cancer or the blindness card often, but I was really mad. She said that she had already called her manager, and regardless of whether or not he was blind or a cancer survivor they didn't want to spoil a 3 year old's birthday. They offered to open as a private party just for us for free. I tucked my tail between my legs, a bit overwhelmed by their kindness, and informed my family that we could indeed swim today.

We spent about two hours with the beach all to ourselves. It was awesome. We swam and played and had a ball, all due to the kindness of 3 young lifeguards, who incidentally were about as mad as we were that their coworkers all took a day off. They were going to miss out on most of a day's pay. I asked them for their boss's email address, so I could let him know how awesome they were about the whole thing, and to my surprise and entertainment she asked me to include the distance we travelled and the tidbit about him being blind and a cancer survivor. She said they had been equally upset by the events of the day, and it would help them hammer their point home as well. She was one cool lady, and I happily did just that.

For months we have been collecting his presents. He's too young yet to request any presents or really know what he wants, so I've spent a lot of time at Toys R Us and on the Internet trying to find things I thought he would like. We got him all kinds of noisy trucks and cars, as well as some books and such. One of my favorites was an electronic voice changer with all sorts of sounds. It is highly entertaining, very loud, and the novelty has already worn off. I hope it breaks soon. He also got his very own Doggie from Magnus (he is forever stealing Magnus's favorite stuffed dog named Doggie), a ball that goes "BOING" from the grandparents (very cool, one of the only balls on the market that has an electronically sustained sound so he can find it himself when it rolls away), and a metric ton of Maisy books (his favorite) from my Mom. We scattered the presents throughout the day so he could have an opportunity to play with whatever he just opened and keep things exciting.

He was very specific about what he wanted for dinner: hot dogs, mac n cheese, corn, and applesauce with cupcakes for dessert...that's pretty much how he asked for it, too. We had the bakery put a picture of Matthias vacuuming on each cupcake. Why? I know he can't see it, but we all could. And he had a huge smile on his little face when I told him what was on the cupcakes. He also had the biggest, super happiest smile on his face when we all sang "Happy Birthday" to him.

It's not too hard to create a day Matthias will enjoy. We just need to remember not to underestimate him. Sometimes he just likes knowing what is going on around him, and he loves being goofy. Just like any other kid, if we are having fun he will too.

Bummer

2011-08-14T17:18:00.000-07:00

Most of the time I am indifferent about Matthias's blindness. I know that sounds weird, but it is normal to us. It is simply part of who he is, like being left handed or something. We have been working with him for so long, we hardly notice the difference. I'm actually kind of surprised when people say "I'm sorry" or show us any sort of pity. I just don't look at it that way, for the most part. Every once in a while, though, blindness sucks. Today I had one of those moments.

Craig and I have always enjoyed going to the zoo, even before we had kids. We have a membership to the Indy Zoo, and we go every few months. Our trips have become increasingly limited since we learned Matthias was blind. I can't imagine it is much fun for a kid to walk and walk, seeing nothing, feeling nothing, possibly hearing a random scary noise, and smelling poop. Some zoos do things a little better, but Indy is almost 100% visual. There is nothing really to touch, and it is a rare treat to hear an animal make any sort of noise. You can touch a shark if you are lucky enough for them to come close to the tank wall. Today we were fortunate that the sea lions were feeling chatty, so we listened to their barking for a while. Sometimes they have volunteers with bones, skulls, teeth, pelts, or other items to touch, but today there was only one station that we ran across in the entire zoo. Most of the time, I am just telling Matthias what we see, which can be tough because he doesn't have any point of reference yet for size or shape. Size, in particular, is really difficult to convey to a kid who has never had sight. I try to be as descriptive as possible, but sometimes he just has no idea what I'm talking about. It is typically OK when we go. Not great. Not bad. Magnus has a good time; Matthias gets bored.

Why go? Because Magnus loves it. He enjoys almost everything about the zoo, and we try to make sure he doesn't miss out because Matthias can't enjoy an activity as much as he does. Magnus makes tons of sacrifices for Matthias, and turn about is fair play.

Today was mostly like any other trip. Matthias was not at all excited about going, but Magnus's level of excitement made up for that. When we were finished listening to the sea lions (which are near the entrance), we moved on to the fish building. We tried forever to touch a shark, and Matthias finally got a finger on one for a fraction of a second. We continued through other exhibits; I have an app of animal noises on my phone and played any sounds I could for Matthias whenever applicable. I was keeping Matthias engaged while Magnus enjoyed himself, but only barely.

We decided to go to the dolphin show today, a first for us. We've never been to one because for a while Magnus was too young to bother, and when Matthias came along it took a long time for him to get to a point where I could talk him through it. The show is great if you can see, but really tough if you can't. They pumped loud, energetic music through the speakers, which was great for the energy level but sucked for trying to talk to Matthias. It also drowned out much of the sounds that would have appealed to him (like the splashing and swishing of the water as well as the occasional dolphin chatter). The whole situation got to me, and I found myself crying. Not rolled up in a fetal position rocking or anything, just a few "that hurts" tears. It was hard to see Magnus wide eyed and fascinated, and Matthias was just sitting there bored. It really sucks when I know Matthias is missing something that every other kid in the room is thoroughly enjoying, and there is nothing I can do about it. I'm often able to quickly move on and find something else to interest him, but sometimes that's not possible.

I sucked up the tears, took a deep breath, and kept describing everything I saw. We finished our trip playing at a playground in the middle of the zoo, where a kid tried to steal Matthias's cane twice with no parental intervention. That was it. We called it a day, and I left feeling a little sorry for myself. I have no problem permitting myself this indulgence on occasion. I have a pretty good attitude about blindness most of the time, but sometimes I just need to let it suck for a little while. After we got home, we were watching Thomas the Tank Engine, and Matthias wrapped his little arms around my neck and said, "Why are you sad?" I decided to be honest and said, "I'm sad because you can't see. I love you, and it sometimes makes me sad." He replied, "Oh. I can see," in a tone that sounded like "silly Mommy" and walked away.

As if to hammer that point home, Matthias asked to go outside when I started writing this post. I told him to go find his shoes and I would be there to help him in a minute. I wanted to finish my thought, and I knew he could at least find the laundry room by himself. He came back into the kitchen 5 minutes later, having found his shoes and put them on the correct feet all by himself. Wow, I thought. Point taken. I stopped my mini pity fest and went outside to play.

I don't really see how that's any of your business...

2011-08-13T18:02:00.000-07:00

Craig and I have been together for 11 years, married for almost 9 of them. We were very good friends before we started dating, and we know each other well. We were told by many people that our situation with Matthias would make our marriage stronger, but I totally disagree. I think the inherent strength of our marriage made having a sick, and eventually disabled, child bearable.

Craig and I met at a residential facility for emotionally disturbed teenagers. We were both Case Managers, and we became quick friends. I fell in love with him long before I realized it. He is smart and funny and handsome, but the thing I have always loved about him is his bizarre confidence. Craig is a unique man, and he owns every bit of who he is. He is a quirky mix of classic manly man and tech geek (picture a tall, Viking sort of guy, clean cut, smoking a cigar, drinking scotch, wearing red Converse All Stars and a Mr. Happy t-shirt). Together, we are an odd quirky couple living in our own little world with our odd quirky little kids.

As parents, we strive to be strict but fair, and we know that fun is the meaning of life. We love to play with our kids and have a good time, but we are not afraid to keep them in line. We have high expectations, because we think our sons are capable of achieving great things. We occasionally err on the side of being too strict, and we are working on being better listeners for our kids. I think we have a pretty good balance, though.

Since Matthias was diagnosed with RB, our marriage has been put to the test. We have been responsible for guiding our children through a tumultuous time in our family life. We've needed to be there to comfort and love both of them, which involves an extreme amount of energy. As spouses, we've been responsible to be each other's support systems, again lots of energy. Before we can do any of these things, we need to confront and process our own emotions, exhausting. It's like being thrust into a very complex dance, and we are aware of the basic dance steps but somewhat uncertain of how to execute them.

We've had our moments of anger, depression, and crazy, but we've also had a pretty solid foundation to rely on. At the core of our marriage is friendship, and that has enabled us to respect and support each other's methods for dealing with heavy emotions. We deal with our emotions in very different ways. Craig is mostly a silent brooder, usually needing to be alone in his workshop building or fixing something to sort out his thoughts. He does not desire or require a discussion. I, on the other hand, need to talk about it to the point of annoying everyone around me. Uh oh...these tactics are not really complementary. We somehow managed to work through our differences, without relying too heavily on each other or ignoring each other. We were not always successful, sometimes getting snippity with each other. Okay mostly me snipping at him when I got too tired or stressed, but he occasionally reciprocated. And neither of us ultimately took it personally.

We also each recognized when the other was falling. We each had breaking moments when something happened that was too much; luckily they were never the same things. The first time the nurse revealed the central line sticking out of Matthias's chest, Craig turned an interesting shade of green, then white. I listened to the nurse's explanation about caring for the line while Craig sat down for a minute. The first time I had to flush his central line with saline and change the cap, Craig quietly talked me through the whole thing and kept me calm. There were about a dozen moments like this over the course of a year, and we developed a bit of a talent for rescuing each other.

One of the positive consequences cancer and blindness has had on our lives, and I suppose our marriage, has been a redefinition of a "bad day." I can honestly say we rarely have bad days, and we are more readily able to appreciate what we have. It sounds crass, but any day when nobody is diagnosed with a life-threatening and/or debilitating disease is a good day. We are aware that life changes at times and in ways that you don't expect, so we are determined to make the most of the moments we have together.

So Craig and I continue on, happy and healthy, enjoying each other, and cracking bad (occasionally inappropriate) jokes to keep each other entertained. I don't necessarily think we do everything "right," but what we do works well for us.

That's Fair

2011-08-10T11:02:00.000-07:00

Craig took the day off yesterday so we could take the kids to the State Fair. This is the second year we have decided to take a gamble and drag the kids to this expensive, junk food, ride rides until you want to puke, people watching paradise. Last year it was incredibly hot and humid, and moderately fun. It wasn't a disaster or anything, but the boys were too little to enjoy many things the fair has to offer...and the heat kind of killed us. This year was much better.

We started our day around 10:30 wandering around a kids' area of the Fair. Right next to this kids' area was a pioneer village where they were using old farm equipment. It was very loud (and not sounds we are used to), and I think the sounds freaked out Matthias a little bit. He was almost immediately tense and saying, "I don't want to," and "I want to go home." Craig and I exchanged a glance, took a deep breath, and told Matthias that there was no chance we were leaving so he needed to find a better attitude. Whenever this happens, it's like coming to a fork in the road. Matthias might decide to cooperate and have a great time, or he may decide to go over to the dark side.

Magnus was pretty excited at the prospect of a pony ride, so we decided to head that way and make at least one kid happy. The whole way to the pony rides (it was close by, but Matthias moves slow...so it took about 10 minutes to walk over there) Matthias complained. "I don't wanna ride the pony....I'm not gonna do it..." I simply responded, "You will ride the pony." We spent the entire walk going back and forth, "I won't." "You will." "I don't." "You do." "No." "Yes." We arrived at the pony rides, and the gentleman taking the tickets overheard our discussion. He told us not to worry; he would refund our money if Matthias refused to ride. I liked this man. He then told Matthias he could have a sticker if he rode the pony. I loved this man. "I get a sticker? Let's go," Matthias said. To clarify, animals freak Matthias out. They are different and unpredictable, and this is evidently common for blind kids. We calmly approached the pony, and I gently placed Matthias's hand right in front of the saddle above the leg. We talked briefly about the smooth feel of the fur, and I asked him if I could put him in the saddle. He agreed. This kid will do anything for a stinking sticker. The guy handling the pony was great. Matthias and I were talking the whole time about what he felt and heard, and the guy chimed in a few times to point out additional details. Matthias was smiling and laughing, and it was a bit of a zen moment for me. When the ride was over, we were permitted a moment to feel the pony's legs and hooves and face. Matthias even giggled a bit when the pony snorted hot breath on his little fingers as he was touching his nose. We walked out, and I asked if he liked it. He said, "No. Can I have my sticker now?" Sigh.

We continued on, playing at various exhibits and having an overall good time. We stopped in at the pioneer exhibit, and Matthias enjoyed sitting and listening to a piano player for a while. Matthias experienced his first corn dog and enjoyed it but was confused about the whole meat on a stick thing. Quite the contrary, Magnus was fully supportive of corn dogs and polished off a whole one by himself. We got slushies and popcorn and climbed on tractors and other farm equipment. He argued against every single thing we did, but each time he ended up enjoying himself.

We made our way to the Midway around 1. Last year we didn't really do any rides or anything because Matthias was too young. So this was a first for the kids...with more arguing from Matthias. Not surprising. Can you imagine what must be going through his mind when he hears loud music, whooshing noises, metal gears grinding, and people screaming at the tops of their lungs? He was tense again (how does he manage to keep every single muscle in his body so tight for so long?), but we were determined to show him how to have fun at the fair. We bought 15 tickets and let Magnus pick the first ride. He chose a kiddie ride with mini semi trucks the kids could drive around a track. I bent down and asked Matthias if he wanted to drive a truck, and in an instant he relaxed and said "YEAH!" Sorry kid; must have misread your full body tension as a reluctance to ride rides. I initially intended to ride with them, but once I got closer there was no way I was going to try to squeeze my adult body into that little truck. I asked Magnus if he could be a good big brother and help Matthias enjoy the ride, and he agreed. I had visions of Magnus shoving his brother out of the truck onto the track, and my face plastered all over "Bad Mothers Weekly." What kind of mother puts a blind 2 year old on a ride with his 4 year old brother in charge? But something miraculous happened. They had a good time together. They were laughing and driving their little steering wheels and didn't fight at all. Magnus was absolutely incredible, talking Matthias through the ride and really helping him have fun. When the ride was over, I went over to help Matthias out of the truck, and he was saying "Again, again, again..." Great. Matthias is an adrenaline junky, and these rides are $2 a piece. Mission accomplished, now to get a second mortgage on the house to cover the adrenaline habit. We moved on to other rides, some he could do and others we just waited for Magnus, also by the way an instant adrenaline junky. Magnus rode the mini roller coaster and the spinning strawberries (Matthias wasn't tall enough and quite put out he couldn't join his brother). The boys took on another kiddie ride just the two of them, and again they were super sweet together. I was prepared for tragedy, and I got awesome.

Yaaaaayyyy!

Then Magnus decided to go on the Ferris Wheel. When we had entered the Midway, Magnus took one look at the Ferris Wheel and said "No way. Too high." In a matter of 40 minutes or so, he was ready for the big time. We decided to make it a full family ride, and the boys were both literally bouncing up and down waiting our turn. We climbed aboard, and Matthias started yelling at Craig. When Craig had stepped onto our car, it started rocking a bit and startled Matthias. He then grew very quiet. I tried to pull him close to me, thinking he was scared, but he told me he wanted to sit by himself. Magnus and Craig were having a great time looking around at everything below us, so I just decided to tell Matthias what was going on in hopes he would, again, come to like this. I needn't have worried. We had a nice long ride, and Matthias clearly enjoyed most of it. The second we stood to get off of the thing he said, "Want to go again. Now." We let Magnus pick another ride to do on his own, and then Craig took the kids on the Ferris Wheel again.

We capped off the day with a funnel cake and cotton candy, and let's just say Matthias can pack away the cotton candy like a pro. I am pretty sure in his dreams he will be riding a Ferris Wheel eating cotton candy.

I think any time you take young children to something like the Fair, it is a bit of a gamble. It is such an overstimulating environment, some kids will crumble and some will thrive. This is especially true of a blind kid. We never know what he is going to do, and we've stopped trying to predict it. We lucked out today, and I think Magnus stepping up as an awesome big brother is mostly responsible for that. Well, Matthias's newfound addiction to corn dogs, cotton candy, and Ferris Wheels probably had something to do with it, too.

Holy crap! Hard work actually pays off.

2011-08-08T17:57:00.000-07:00

Last fall, I took the kids to a local bounce place called Monkey Joes; they have a bunch of inflatable contraptions for kids to jump on. They are a bit on the expensive side, so we don't go too often. On this particular day, it was the first time I took the kids where I paid for Matthias to jump. They give you a wrist band to put on all kids who will be jumping and then have you walk through a monitored entrance. I advised the young lady at the register that putting the wrist band (it was the same size and material they use for the ID wrist bands at Riley Hospital) on Matthias would upset him, so I would just carry it in my pocket. She said no; all paid kids are required to wear them. I, again, explained that it would really upset him, and anyone who questions whether or not we paid can ask me for the wristband. The conversation continued until I needed to ask a manager for permission to not put the wrist band on him. I finally got permission, after revealing that he is a patient at Riley and too young, at the time, to understand that he was not at the hospital or about to get stuck with needles. I should have just turned around and walked out the door, but I'm stubborn.

We finally made our way into the jump area, and Magnus commenced to having fun. Matthias was immediately quiet and tense. I thought playing with him in various ways would loosen him up, but over the next hour he got more and more upset to the point of dissolving into tears. It was awful and stressful, but at least Magnus had a ton of fun.

That was the last time we went to a bounce place, and it was the last time I endeavored to get Matthias on one. On Saturday, we took the kids to a free local fun fair. They had all kinds of activities for the kids, including a big room full of bounce inflatables. The kids both (to my surprise) requested to go in that room. I took a deep breath and headed in expecting nothing less than disaster. Matthias immediately became tense. Not again. I think the loud blowers upset him. I explained that since he had asked to go into this room, he was going to be required to participate. We took off our shoes, and I pushed that stubborn little mule into a giant, square, netted bounce house. It took a few minutes of me playing and singing and showing him what to do, but he actually started to have fun. And then something groundbreaking happened...he actually giggled...then chortled...then all out laughed! Dear God, he was having fun! We were in the bounce room for almost an hour, and when we left he asked to go back.

This has become a bit of a norm for Matthias. He hates all things new, no matter what it is. I hear parents all of the time saying, "We tried that and the kid hated it." Well, I'm here to tell you persistence pays off, especially with a blind kid. Sometimes they just need an opportunity to learn, succeed, and have fun.

Sweet Freedom

2011-08-05T19:13:00.000-07:00

Today I heard trumpets sounding and angels singing as Matthias played by himself for the first time ever at a public playground. I was actually sitting about 10 feet away from him for around 10 minutes and didn't even give him any verbal cues about what was going on around him. I almost relaxed! It was fantastic. The best part was when he shoved an older kid who was invading his personal space. Now I am generally a "hands to yourself" kind of Mom, but I love when my kids stand up for themselves without causing any real harm. And to do it while holding your own in a crazy mass of junk food crazed children is like a deep fried Twinkie dipped in chocolate and drizzled with caramel...totally sweet. (forgive me for that...it is almost time for the State Fair)

Matthias is independent when we are at home, so I am always able to sit on the couch and eat bon bons when we play there. Unless, of course, the children decide to attempt to test each others' pain thresholds or see who can destroy the house fastest, which always requires intervention and some sort of discipline. Otherwise, he sometimes needs a little verbal guidance, "turn left," or "your toy is on the bottom shelf," that sort of thing. Anything in public, however, requires much more attention. Matthias needs to be shown around, which usually takes many trips to any one location, and then he needs to be shown how to have fun there. I must leave my precious bon bons at home and (gulp) play with my children.

We have spent lots of time this summer at our local spray parks; we have 3 free ones within 10 minutes of our house. My kids love water, but I knew these places would be a challenge for Matthias. Each park has a series of sprayers that turn on and off without any discernible pattern. Unpredictability scares Matthias, but I knew he would enjoy them if he just learned how they work. And Magnus LOVES them, so it was only fair to try to get Matthias to enjoy himself too. At the beginning of the summer, Matthias and I would spend an hour or so at the park just trying to get him to put a hand in one of the sprayers on his own. I would make it as fun and exciting as possible, but you can only push so hard before it is time to back off. When I felt I had pushed him enough, I would fill a bucket for him to play with over to the side. Every time we arrived, he would tell me he didn't want to go in the water, but once he got a little wet he would start to enjoy himself. Over the course of many trips, Matthias would play more and more, and he even started asking to go. We are now at the point where he completely trusts me (at spray parks at least...foolish boy). He mostly likes me to carry him through the big sprayers, but he will go in himself if I promise to carry him around for a few minutes afterwards. My big breakthrough was about a month ago I picked him up and turned him on his side, sort of cradling him. I dipped him in the water and then nibbled on his ribs saying "I'm gonna dip you in BBQ sauce and eat your ribs...nom nom nom" What can I say? Three year olds are weird. Although having written that out, I'm not really sure which is weirder...liking that game or creating it.

His reliance on me can be good and bad. The benefit is that it has gotten me off of my lazy butt. It is not possible for me to sit on the side and watch him play. I need to get out there and play with him to show him how to have fun. He also needs me to guide him around such large unfamiliar places. The problem is this is exhausting and often isolates me a little bit from Magnus and from my friends. On play dates if we go somewhere other than my house, I can't sit back and let the kids play while I get some much needed adult interaction. My friends are pretty understanding about that, but I know it would be nice to meet elsewhere once in a while and actually be able to converse. For Magnus, I try to involve him whenever possible, but he is 2 years older and often interested in different things. He doesn't want to spend an hour trying to get Matthias to go down a slide a few times. He'll play with us for a few minutes, but then he wants to move on. Luckily, Magnus is a fiercely independent child and is usually pretty happy to play by himself or with other kids his age.

I am hopeful that Matthias's moment of independent glory is just the beginning. I love to play with my kids and will always be involved, but I can't wait to sit back and watch him have fun on his own terms. To me that is one of the best parts of parenting, watching your kids have fun and explore on their own. And I have better things to do, like sit on my butt and eat bon bons.

Nature's Consolation Prize

2011-08-02T19:24:00.000-07:00

In the cancer world, we are considered the lucky ones. On more than one occasion we have been told "If you're going to face childhood cancer, retinoblastoma is the one to get." In developed countries, RB has a 95% survival rate. Having spent some time on an oncology unit, I can confirm we are indeed lucky. In fact, whenever you feel a little down on your life, 5 minutes in the lobby of any children's hospital will cure your woes.

In the blind world, we are pitied. Blind kids are rare, but blind RB survivors are REALLY rare. Matthias just happened to have aggressive tumors in the most visually damaging location possible. Most babies or toddlers who are blind or visually impaired have developmental delays as well. Most parents we meet at this stage are dealing with issues that we can't imagine, but as soon as you say "cancer" it seems to silence the room.

Each year, the Indiana School for the Blind and Visually Impaired (ISBVI) holds a conference for parents of blind children. We have attended since 2009, and it is an incredibly informative conference where we meet other parents. The first year we went, every professional who had worked in the field for any amount of time said, "I'm so sorry to hear about the cancer, but I will tell you that RB kids are really smart and do very well." We heard this over and over, and we honestly thought people were just trying to make us feel better. Then someone, I can't remember who, sent us a series of studies supporting this. Children with genetic RB had consistently tested higher on IQ tests than sighted and blind peers.

So, what does that mean? The kid is blind and prone to life threatening cancer, but he is wicked smart? That's exactly what it means. The only way to truly understand his intelligence is to hang out with Matthias for a while. I'm his Mom, so I always come across as a bragging Momma. But he is honestly and truly very smart.

When he was around 6 months old, we enrolled Matthias in Indiana's First Steps, an early intervention program for babies and toddlers with or at risk for developmental delays. Visual impairment qualified him for assistance. Matthias was immediately assigned a Physical Therapist and an Occupational Therapist, and we gained a Teacher of the Blind a little over a year later. He responded well to therapy and learned new skills very quickly. We attributed this progress to our dedicated therapists, but it soon became clear that they were working with a pretty special kid.

The first few months of therapy went well, but our monthly chemo and opthalmologist appointments usually sabotaged any progress he made. Everyone noticed, however, that he had an unusual level of focus. He was expected to move from activity to activity quickly, not spending more than a few minutes on any one toy/object/game. That is normal for babies and toddlers. But Matthias would spend up to 30 minutes (occasionally more) exploring one object. This particularly fascinated the Occupational Therapist, Dana. She would bring a bag full of toys and watch him thoroughly examine one or two in their hour long session.

When we scheduled the enucleations (surgical removal of the eyes) we prepared for a serious setback. The surgeries themselves were awful, but once he physically recovered we saw a new side of Matthias. This child attacked the world with a vigor we had never seen from him. I swear it was like he was telling us "Thank God you finally removed those things...they were just annoying..."

He thrived in therapy. Most new skills we endeavored to teach him were learned quicker than we could imagine. On average, if we worked on it a little bit every day, he could learn a new skill in about a week. If I didn't work on it much with him it took more like two or three weeks. At the time of the enucleation, Matthias was barely steady sitting up and didn't spend much time on his belly. Between severe visual impairment, a central line sticking out of his chest, and constant chemo and surgical procedures, it's not hard to imagine he was pretty far behind physically. Within a couple of months, we had taught him to sit up, balance, stand up, roll around, all kinds of new skills. Every week we were discussing with the therapists what to work on next. We got him walking at 17 months (19 months is average for a blind toddler), and he quickly thereafter learned directional cues like right/left and forward/back. So in 6 months, he went from laying on his back most of the time to walking and understanding basic directions.

While we found this impressive, we figured he was just making up for lost time. Matthias's heightened IQ didn't really show itself until he started talking. Just before he turned 2, he had an annual evaluation with First Steps, and they expressed concern that he was not yet talking. They recommended Speech Therapy. While we didn't like his silence either, we wanted to wait a few months before adding another therapist. Matthias was showing an understanding of speech, and we theorized that he was choosing not to talk. We were right. Shortly thereafter, Matthias said his first word, "ball." That opened the door, and he was talking in full sentences within months of saying his first word. The really weird part is he was talking in grammatically correct sentences. He was using correct pronouns and correct past/present/future tense verbs. A couple of months after the recommendation for Speech Therapy, the Occupational Therapist walked in and Matthias said "I would like to go into the living room and play ball please." Everyone was blown away by his rapid speech development.

Once the talking started, the intelligence became evident. We noticed his ability to understand patterns last Thanksgiving. Craig was very sick, and I was trying to keep the kids entertained while preparing an impromptu holiday meal. I started telling Magnus those stupid "You know what??? Chicken butt," jokes. After listening to me for about 5 minutes, Matthias started changing the jokes on his own while still following the rhyming pattern. My favorite was "You know why? Pumpkin Pie." He was not repeating me. He figured out the pattern and adapted it. He had just started talking about 2-3 months prior to this.

We started potty training when he turned 2, putting him on the potty for a few minutes and singing songs until he went. A few months later, he became obsessed with the vacuum cleaner, so I told him he could vacuum every time he peed in the potty. Within 48 hours of presenting this deal, he was regularly peeing in the potty. He even learned to pee a little and hold some so he could pee/vacuum again when I told him it was time to turn the vacuum off. He was fully potty trained before he was 2 1/2.

He has continually kept his therapists on their toes. I'm not sure how long it normally takes for a kid to master the various tasks they present, but he averages a couple of weeks. Last week, our teacher of the blind, Tracy, brought various foam shapes and had Matthias sort them. We had been working on shape recognition (an incredibly difficult concept to teach a blind toddler) for the last couple of months, and she wanted to challenge him. He accurately gave her squares, stars, and circles. Today she had a much bigger bowl of these shapes and asked him for hearts, stars, and squares. We have shown him hearts on occasion, but it is not a shape we have focused on. We have mostly worked on squares, triangles, and circles. He was able to find all of the shapes she requested. A couple of times, she had to tell him there were more in the bowl, but he found all of them. He even got a little bored toward the end and let her know he wanted to move on and play with the "hard stacking blocks." He is also able to do a shape sorter independently if you show him which face of the cube the hole is on and a shape puzzle if you tell him whether the space he is looking for is at the top, middle, or bottom.

While he is a rock star, he is far behind his sighted peers in ways that are always obvious when you consider his blindness. He requires lots of assistance eating; think about teaching a kid who can't see to keep a spoon level. Oy. He gets a little better every day, but this has been a painstaking process. He doesn't run or jump, again a scary endeavor for one who bumps into people and things all of the time. He doesn't really understand a house or a tree or colors or thousands of other concepts in the same way we do. But he can count to 70 (nobody has taught him to count; he figured out the pattern and this number goes up almost daily), recite numerous books word for word, and follow multi-step instructions (like your toy car is on the floor on the left side of the play room doorway). He also learned to effectively use a white cane in less than a week.

I'm going to end this entry with a little nod to our therapists. Matthias is smart, but intelligence is nothing without competent guidance. We have been so fortunate to have talented and dedicated therapists teaching him thus far. They have given us support and direction to help hone the qualities he has and make up for what he lacks, and it has made an incredible difference. These ladies are part of our extended family and will be greatly missed when First Steps ends in a couple of weeks.

I think every kid on this planet deserves a Mom who thinks they are the most incredible being ever to walk the Earth. I often wonder if my observations of Matthias's intelligence are over-inflated because I am his Mom, but when professionals, extended family, and total strangers are blown away by your kid you start to think maybe you're right. No matter what, I can't wait to see what happens when Matthias starts his formal education in a couple of weeks.

Does Matthias have super powers???

2011-08-01T18:40:00.000-07:00

The most common question people ask when they realize Matthias is blind is "Does he know sign language?" I'm not kidding. I think people don't know what to say, so they say the first thing that comes to mind without really thinking about it. The second most common question, ironically, is "Does he have super awesome hearing??" Yes and no.

Matthias thinks crunchy snow is hilarious.

In general, a person who goes blind does not have super hearing. They work very hard to learn how to use their hearing (and other senses) to interact with their world. This takes time and training. They learn to pay more attention to their environment using their other senses. They also don't tend to tune out sounds the same way sighted people do. Since sighted people do tune out many of our surroundings, we think blind people have super hearing when they notice a sound we don't. But remember, it's not that you can't hear it, you just didn't notice it.

We first learned that Matthias was severely visually impaired the night he was diagnosed with cancer, but it took about a month for us to acknowledge that part of his disease. We contacted the Indiana School for the Blind and Visually Impaired (ISBVI) early outreach program, and a lovely woman came out to our house to meet Matthias and counsel us. She immediately embraced us and told us it was going to be OK. We thanked her for her kindness and explained to her that we were processing the issue of his visual impairment, but we were not devastated by it. Craig and I are the type of people who are quick to accept the facts so we can learn to deal with the situation. She smiled appreciatively and immediately started giving us valuable advice for helping him. He was still only about 5-6 months old at the time, so her initial advice was pretty basic. She told us to talk all of the time, describing what was going on around the house, sounds we heard, smells, literally everything. Anyone who knows us will understand that this was not a problem. We are talkers. She also told us to tell him when and where we were going to touch him. Since he couldn't see us coming, it could be alarming to be randomly grabbed and flying through the air to an unknown destination. I had never really thought of that.

It sounds so simple and obvious, but it was like her advice illuminated the limitations of his world for us. We immediately observed positive changes in Matthias. I had never really noticed, but his muscles were constantly rigid. He never knew who was going to pick him up or what was going to happen. His tension was not manifested in screaming or crying but in a rigid silence we had never noticed. When we started talking to him, he relaxed; he had obviously been craving this input. He was always a good baby, but he was absolutely delightful when we started describing the world around him.

This was the beginning of his "super" senses. We dove into this world and described everything as instructed. At first it was the basic sounds of the house and surrounding areas, and as he has gotten older we have moved on to other locations and added other sensory input. We listen, touch, smell, and taste (when applicable) everything we see. This is why I describe mothering Matthias as time consuming in a good way. Have you ever walked through the woods and touched every tree you pass? And by touch, I mean run your hands from the roots to the highest leaves you can touch, wrapping your arms around the trunk to feel how wide it is. It takes us about an hour to go 1/4 mile, but it is one of my favorite things to do with the kids. We started small, of course, when he was a baby, but it is getting so much more fun as he gets older.

All boxes are fun, but cookie boxes
smell good, too.

When we came to understand we are his eyes, we started paying more attention to the world, and so did Magnus. This is one of the cool parts of having a blind kid. The visual beauty of the world can often be obvious, but I never really thought, until the last 2 years, of the beauty of the sound of a flag flapping in the breeze, or the musty smell of walking in the woods, or how the air in a strawberry field tastes a little sweet, or the delicate softness of moss growing on coarse asphalt. Matthias's world is full of incredible beauty, and we are so fortunate to be immersed in it every day. It is honestly like discovering hidden treasures.

This summer, we enrolled Matthias in day camp through our local park district. It was just an hour and a half camp for 2 1/2 to 4 year olds. It is not intended for blind kids, but we informed them of his disability ahead of time. It was obvious on the first day that the counselor was a little intimidated by this twist in her summer schedule, and the parents were curious about our presence. None of them were negative or mean, just uncertain. By the end of that first week, the counselor was intrigued and impressed by her little curve ball. Over the course of the week, she started to make subtle changes to help Matthias participate in activities, adding things to touch or talking about sounds in addition to the usual pictures they used. All of the kids enjoyed the extra experiences, and I think she began to enjoy it as well. When that first week was over, the counselor offered to maneuver a few things so Matthias could attend another week of camp a few weeks later (we had initially only signed him up for one week, not knowing if he would like it). When we arrived for the second week of camp, the counselor was obviously excited to see us. She had made a few changes to her programming to appeal to Matthias; she and her co-counselor had even gone out early one morning to gather items throughout the park for Matthias to touch on a hike discussing habitats. I am willing to bet she will include some of these changes in her lessons next year whether we attend camp or not.

So, does Matthias have super hearing? No. He just lives in a slightly different world than the rest of us. Not better or worse, just different. And it is a cool place to hang out.

Magnus

2011-07-29T19:48:00.000-07:00

Magnus is also an artist.
He is always drawing, painting,
and creating.

The most underrated hero of this whole adventure is Magnus, Matthias's 4 year old brother. And I think Matthias would agree. Magnus is a little kid with a big personality. Whenever we describe him we say "Magnus is Magnus" because he is so unique. He is smart and funny, and he has an incredible sense of self for such a little person. He also has a beautiful heart, and I know he will spend his life caring for others.

Magnus was just barely 2 when Matthias was diagnosed with cancer. That night, we were in the Riley hospital ER being closely watched by hospital staff. Matthias's retinas has been completely detached by fluid secreted by the tumors, and detached retinas are consistent with shaken baby syndrome. We had been sent to the ER to get a CT scan. The opthalmologist had explained that the damage to the retinas was consistent with shaken baby syndrome or a very severe case of retinoblastoma. Since we knew nobody had shaken Matthias, we waited 5 hours to be cleared of wrongdoing, confirm the presence of cancer, and learn treatment options. It was a tense 5 hours, but Magnus was a little angel the whole time. An army of doctors and nurses came in to deliver the bad news and then left quietly and respectfully. As the door closed, I looked down at Matthias in the hospital bed. A million thoughts and emotions ran through me, and then my thoughts turned to Magnus. He was sitting in a chair on his knees carefully nibbling a graham cracker and sipping some apple juice. He was smiling, humming, and enjoying his little personal picnic. I was painfully aware that his life had just changed as much as ours did. He was just a toddler adjusting to the addition of this little baby, a transition he had handled very well. Now our family was entering an emotional and uncertain time, and he was going to be in he middle of it.

Craig and I were aware of the impact this would have on Magnus from the beginning. We always made sure to give Magnus some extra special attention during the weeks of chemo and surgeries. Magnus could not comprehend that Matthias was sick. He just knew that we were paying more attention to the baby. On the days of all of the major surgeries, we handed our sleeping, drugged out, recovering baby to a grandparent and headed out the door with Magnus to go to the park or out to dinner, anywhere to make him feel special. It was exhausting and emotionally difficult, but I don't regret it one bit. Magnus got the attention he craved, and we could take a deep breath for an hour. We knew how important it was that Magnus never thought we were choosing Matthias over him. But most of the credit goes to that powerhouse of a kid. He has never shown any jealousy above and beyond that of a normal sibling. To be honest, even that kind of acting out is rare.

As our family has recovered, dealing with Matthias's blindness has also been tricky. Matthias needs help. No matter how much I want to play with Magnus at the park or chase him around the pool, Matthias is in constant need of guidance. We also have therapists who come every week to help Matthias. They do a great job including Magnus when they can, but they are there to teach the blind kid. There is only so much they can do to include the big brother.

Magnus is slowly beginning to learn/accept this reality. He is aware that Matthias can't see. One of my favorite moments to date was when we were driving home after a rain storm, and I was splashing through puddles on the road. Magnus said "Do it again!" I said "I don't see any more puddles, Sweetie." Matthias said "Oooh! I see one!" And Magnus, without missing a beat, said "You can't see. You're blind." He doesn't totally get it, but he is slowly beginning to understand. He loves to guide Matthias and help him or cheer him on. Matthias does not always trust Magnus (with good reason...Magnus has been known to walk him into doors and walls), but he beams with pride when we encourage Matthias to trust his brother.

One day recently, Magnus got very upset when Matthias destroyed his train track layout. Matthias simply doesn't understand how to run the trains along the track and had been trying to play with his brother. I told Magnus to calm down and teach his little brother how to play trains. I explained that since he has never watched Magnus play trains, he didn't know what to do. Magnus thought about it and then tried very hard to work with his brother. Matthias never really got the hang of it, but it was pretty cool watching Magnus patiently try to teach him.

Magnus also likes to get involved in physically caring for Matthias. He is intensely protective of him, so I try not to take Magnus with me to doctor appointments anymore. He gets upset when Matthias gets stuck with needles and has been known to get a little mouthy with nurses. He likes to watch us take out Matthias's eyes and will imitate our actions on various stuffed animals in the house, most often his favorite, Doggie. He recently had a big moment when he was permitted to help clean Matthias's eyes. I think involving him whenever possible gives him a sense of control and involvement. Every night he asks Matthias if he can help put him to bed. I love when Matthias says yes. They walk hand in hand down the hall, and Magnus gently tucks his little brother in.

Magnus is a big brother and a hero, and he will forever live in the shadow of his unusual little brother. Everyone asks about the blind kid. Everyone praises the blind kid. Everyone talks to the blind kid. But behind that blind kid is a hell of a big brother.

Cancer Sucks

2011-07-27T18:48:00.000-07:00

This is a bit of a downer topic, but it is part of who we are. Matthias is a cancer survivor.

Matthias is currently considered cancer-free. The malignant tumors were contained in his eyes, and a pathology study done on both eyes after their removal found no indication the tumors had spread. That's the only good thing about retinoblastoma. The eyes don't have great circulation, so the only way for it to spread (as far as we know) is if the tumors travel along the optic nerve into the brain. As long as that doesn't happen, the tumors typically remain contained in the eye. That's the good news.

And then we have the not so good news (not bad, just not so good). Matthias's cancer was caused by a genetic mutation. We went through genetic testing and determined that he is the only one in our little family with this defect; it was a spontaneous mutation at the time of conception. This means that there is no chance that Craig and I would have another kid with the same mutation, and there is a 50/50 chance Matthias will pass it on to his own children. It also means that Matthias has a heightened risk for cancer in the future.

The most common secondary cancers for genetic RB survivors are sarcomas (random tumors, with RB they are typically found in the skull, but they could be anywhere) and leukemia. Since Matthias didn't undergo radiation, his risk for developing sarcomas should theoretically be less than a survivor who had radiation. His risk for leukemia is a bit higher. Because he is a genetic cancer survivor who underwent chemo, he is at risk. His highest risk will be at 5-8 years old because chemo can cause cancer about 5-7 years after it is administered. The good news is he was given an incredibly small dosage of the medications, so his chances should be minimal.

What does all of this mean? We are very careful with Matthias. We slather him with sunscreen (we have read melanoma is a significant risk with RB survivors as well), we make sure he eats relatively well, and we make sure he has competent physicians caring for him. We also pay a little more attention to changes in his body that can be considered abnormal. He will be under the care of an oncologist for the rest of his life. He currently sees his oncologist at Riley every 6 months. When his oncologist deems it appropriate, these visits will become annual. He has blood work done to look for the development of leukemia, and he has a thorough physical exam to check for sarcomas or anything else nefarious. So far, so good.

He sees his opthalmologist once a year to make sure the transplanted tissue and implants are healthy. Assuming everything stays healthy, there should be no reason for him to have any further eye surgeries. He will need to maintain these annual visits for the rest of his life.

How are we doing with this? We take one day at a time. We try not to think too much about it. Craig and I have become quite good at not worrying until someone tells us it is time to worry. We don't want to give either of our children a complex about their health, but we are constantly aware of cancer's role in our lives. Honestly, I think the worst part is having our childrens' mortality thrust into our minds. Before Matthias had cancer, I never dreamed of losing a child. Now I occasionally struggle with that possibility, and I worry about their health and safety more than before. Also, we all have a rough day when Matthias has his semi-annual appointment at Riley. Matthias gets upset because he gets poked and prodded. I get upset because I need to, yet again, hold him down for someone to poke him with needles. Magnus and Craig get upset because Matthias and I are hurting. It is usually a bad day or days. And we usually end up eating a lot of junk food and going out for ice cream.

So that's where we stand on health. He is a survivor, and we hope every day that we never deal with cancer again. We hope that everyone who reads this will consider making donations to cancer research in the future. Cancer touches many lives, and never in a good way. It is in all of our best interests to cure this crap. Here are a few we have gladly donated money to:

St Baldrick's specifically raises money for childhood cancer research.

Be the Match Bone Marrow Registry I am a registered donor, and I hope I can help someone someday. If that is too much, they accept monetary donations to help patients and donors pay for their procedures.

The Leukemia and Lymphoma Society We know several people who have been involved with Teams in Training to raise money. You can donate or consider joining a team.

Riley Hospital for Children This is where Matthias has been treated since the beginning. It is a very special place.

The eyes...

2011-07-26T17:52:00.000-07:00

I am sure most people want to know, but few are willing to ask, what the prosthetic eyes are. And what is there when we take them out?

The suction cup and the eyes.

Both eyes are like large contact lenses. They are not big balls. When his eyes were removed, the surgeon used an implant that looks kind of like a white ball the size of a super ball made out of medical grade silicone. He put the ball in the open eye socket and used donor scleral tissue to hold it in place. Our surgeon used an adult sized ball to keep the pressure on Matthias's skull as it grows to hopefully avoid any deformations of the skull or sinus cavities (a common problem in the history of enucleations). While he was healing, Matthias had a clear scleral shell which sat over the transplanted tissue to protect it. At first, his eyes were very red, but once healed they became a soft pink. We went to see a woman called an ocularist who replaced the clear shell with a painted white acrylic one. She matched the eye color to mine to make it look realistic. Why did she match it to mine? Because Craig wasn't there that day.

The suction cup on the eye.

It does not hurt to take them out or put them back in, but he certainly didn't like it at first. The ocularist said it feels like pressing your tongue against your cheek; there's pressure but no pain. He got his first set of prosthetics just after his first birthday, so he was way too young to understand what was going on. For the first 6 months, we had to pin him down to get them out and back in. He cried and fought, and he is strong. He hated it, and so did we. We decided, since this was something we all needed to accept, to take them out once a week to help him get used to it. We really only need to take them out when they are dirty, but we wanted to make it routine so it wasn't so traumatizing. Every time we took them out, we would hold him and sing to him. After many months, he stopped crying to listen to the song I was singing (usually either Rainbow Connection or Puff the Magic Dragon), but he would still fight to the point that he needed to be held still. Somewhere around that 6 month mark, he finally held still on his own so I could take them out. That night, we let him hold the prosthetics so he could better understand what we were doing. It has been pretty easy from there. These days he even asks for us to take them out, and he likes to help. I will put the suction cup on his eyes, and he will pull them out. Then we let him pull the eye off of the suction cup. We flush the sockets with saline solution. We wash them with baby shampoo, and he helps push them back in place.

Flushing with saline. He says it feels good.

As he is growing, we visit the ocularist regularly for polishing and adjustments. At first, we saw her pretty frequently because he was still growing rapidly and she was trying to get the right fit. For adults, they pour the same stuff they use for dental molds into the socket to get the right shape. Since that is too traumatic for kids, she played with the shape over the course of several months to get it right. You know it is off or he needs an adjustment when it looks like he is looking the wrong way. There is also a red dot at the top of the right one and a blue dot at the top of the left one to tell you how to put them in. If that dot migrates away from the top, it needs to be adjusted. Once she got the correct shape, we started to see her about every 3-4 months for adjustments due to his growth. Since his growth has slowed over the last year, we are seeing her every 6 months. We have an appointment on Friday because the right one keeps turning. When his scull is fully grown, we will see her every 6 months for polishing. He will need a replacement set, on average, every 5 years.

How much do they cost? The actual lenses cost $2500 per lens, but with constant fittings and adjustments our initial bill for the pair was just under $10,000. We were extremely lucky that our insurance paid most of that. Every polishing is $75, and adjustments run about $1500 for the pair. We haven't done the complete math, but we think the current eyes he has are worth about $15-$17,000. If you think that's high, you should see the bills for cancer treatments.

Matthias without his eyes in.

When Matthias started calming down for the cleaning process, we decided to name them for fun. This requires a quick back story. Matthias's middle name is Odin, the Norse god of wisdom and war. He had this name from birth, so we had no idea how significant it would be. In Norse mythology, Odin traded his eye for the ability to see the future, but he was devastated to realize he can only see up to his own death. It took us about 5 minutes after Matthias was diagnosed with RB to look at each other and say "Isn't that interesting..." When we brought Matthias for his first surgery to implant a central line for chemo, we put on his viking hat (he had been a viking for Halloween) as a nod to Odin. He was well known at the hospital as the Viking Baby. Anyway, we decided to name the eyes Huginn (pronounced hoo-jen, left eye) and Muninn (pronounced moo-nin, right eye), for Odin's ravens.

What about an eye transplant? Nope. The connections between the eyes and the brain are incredibly complex, and science has not yet figured out how to make it work. At the time of his surgery, our opthalmologist explained we needed to make this decision understanding that it was permanent. He thought that it would be 50 years before they had the knowledge/technology to make an eye transplant or other useful technology work. Matthias is permanently blind.

How is Matthias doing? Common questions answered...

2011-07-25T17:49:00.000-07:00

We get a ton of questions, but I think most people just want to know what it is like to have a blind kid. This is not an easy question to answer. The easiest answer is time consuming. Everything with Matthias is slow and repetitive, but not necessarily in a bad way. We are learning to see the world in an entirely different way, and it is quite beautiful. I truly believe his world is just different, not better or worse.

I think I'll tackle a topic a day for a few days. Most of these topics require a bit of explanation, and I don't want to be too boring.

How does he get around?

  Matthias learned to walk at about 17 months, which is pretty quick for a blind toddler. Balance was a huge challenge for him, as was helping him understand that there was a reason to walk. Since he could not see the world around him, his immediate surroundings were his world. It took lots of time and energy to help him explore his surroundings and start to desire to move around. In addition to this, he had the added problem of balance. Sight is an incredibly important component of balance. I once had it explained to me that for most people balance is like a stool with 3 legs. Take one of those legs away, and balance is possible but will take time to master. Once we got him balanced and moving, the challenge became helping him explore safely.

  The most common technique is using a sighted guide. This is where the blind person takes your elbow (or in his case your hand because he is so small) and relies on you to tell him about obstacles. We will always use this technique, but we wanted to give him opportunities to get around on his own. It is also, frankly, exhausting to be a toddler's personal guide dog.

  We started with trailing. This is a technique where you teach him to follow a specific path with his hand to reach a specific location. We began with trailing about 10 feet from the living room to the play room. As he learns a trail, you begin to expand it more and more until he has the terrain down. We have mostly concentrated on our house, and he is now able to navigate our house with periodic verbal cues, meaning occasionally he needs you to tell him to go right or left, backwards or forwards. We have focused heavily on spacial awareness with him, and by the time he turned 2 he understood terms like right/left, up/down, front/behind, etc. We have also focused on parts of the body, so we can say things like "your fire truck is by your left knee" and he will be able to find it.

  In an effort to give him expanded independence, we found directions on the Internet on how to build a pre-cane to help him start to rely on a device instead of always a person. I started by holding one side of a 6 inch piece of PVC pipe with him holding the other end. This broke the physical contact and helped him understand that skin is not required for navigation (and also earned us some very curious looks when we were in public). We then moved on to the pre-cane. It was basically a giant rectangle made out of PVC pipe that he pushed in front of him with both hands. Last fall, we used it occasionally to walk to the park down the street. He didn't like it, but he would agree to do it as long as he got to swing when he was done. Our goal was simply to stay on the sidewalk. We nicknamed the cane Iggy (I suggested the name Ignacious when I was pregnant and was quickly shot down, so it was a bit of a joke between Craig and me). We didn't use Iggy much over this past winter, but when Spring arrived, we attacked with full force. We started making him use it once a day, with some sort of reward when he did so willingly (usually swinging).

  Matthias was not terribly comfortable exploring outside of our house, with or without Iggy. He would walk around outside or in unfamiliar territory with a sighted guide, but he would not explore on his own. We started getting a bit irritated with each other because he wanted to explore, and I occasionally wanted to talk to an adult or sit on my lazy butt. Thank goodness he started branching out around March or April. I suppose I attest this to his innate stubbornness and the fact that, while it was occasionally unpleasant, I refused to edit our outings. Craig and I insist that Magnus (our other son who is almost 5) should be able to do everything that normal little boys do without falling victim to his brother's disability. We figured that would be a fast way to create resentment. So we drag Matthias to the pool, park, museum, zoo, beach, spray park....anywhere and everywhere regardless of how we think he will feel about it. We also think it is essential to Matthias's development. We can't exactly show him pictures or point to things and say "that's a tree" or "that's a lake." The only way to help him form an understanding of his world is to get him out in it. Our outings were not always pretty, especially right around the time he turned 2. Since he could not see what was going on, he would often be fussy, needy, and cranky in new places. Over time, with repeated exposure to new things, he has gotten much better. And I think he has gained a sense of adventure.

  This summer he has been tenacious getting around outside. He hated touching the grass last year, and now he roams around it freely. I am able to sit on our back patio, drinking my evening glass of wine, and bellowing directions at him. Or he sometimes follows the sounds of other kids in our backyard. He moves super slowly, but he creeps around on his own.

  About 3 weeks ago, we decided to give him a true white cane, which we got for free from the National Federation of the Blind (go to NFB Free Cane Program to see how to get a free cane or donate to the program). He had continued his use of Iggy, but it was becoming obvious that he didn't like keeping both hands on it. Indiana does not provide Orientation and Mobility training for children under 3, so we researched online how to use the cane. We learned how to hold it and the basics of using it, and we started using it every day. Just a few minutes at first, then longer and longer. His reward for using Iggy was vacuuming, which was also his reward when potty training. Don't ask. He loves the vacuum more than I can explain. Anyway, we are now at the point where we use it to go everywhere.

  Yesterday, we used it at the Childrens' Museum of Indianapolis. He holds the cane in his right hand and holds my hand with his left. We talk about the different types of flooring we hit (tile, wood, carpet, etc.). We talk about what stairs or curbs or doorways feel like. Our intent right now is to teach him that Iggy keeps him safe, gives him information, and is not a weapon. He only occasionally swings it like a samurai sword, but he is, after all, an almost 3 year old boy. He is able to identify items he hits with his cane with about 80% accuracy and has taken to it much faster than anyone expected. Our teacher of the blind who comes once a week is blown away by his abilities, saying she has never seen anything like it. We will continue to use Iggy everywhere we go until he gets formal training from an O&M specialist in the fall.

Background

2011-07-24T18:55:00.000-07:00

At the encouragement of my father I have decided to start a blog to track the progress of my son, Matthias, as he enters school for the first time. Matthias will soon be 3 and starts preschool in about a month. He is completely blind and has been since he was 11 months old.

Matthias was diagnosed with bilateral retinoblastoma (cancer of the retina in both eyes) when he was 3 months old. He had large, aggressive tumors which had completely detached both retinas. We immediately began a 6 month course of chemotherapy. He tolerated chemo well (meaning he wasn't too terribly sick), but the tumors kept coming back. During the course of chemo, it also became apparent to me and my husband, Craig, that Matthias had very little vision. We decided that if chemo didn't work, we would not risk his health any further to save vision that was already horribly damaged beyond repair. We were eventually given a choice to undergo 5 weeks of proton radiation therapy or enucleate (remove) the eyes. We made the agonizing choice to enucleate both eyes.

While the surgeries were brutal, Matthias recovered quickly. We began the task of raising a healthy blind kid. Matthias flourished under the guidance of the Indiana School for the Blind and Visually Impaired (ISBVI) and Indiana First Steps. ISBVI sent a consultant out periodically to guide us in teaching him about his world. First Steps initially sent us a physical therapist and an occupational therapist to help Matthias catch up to his peers developmentally. A little over a year ago, a teacher of the visually impaired also joined our team through First Steps.

Matthias is developmentally on his own little plain. He is well behind his sighted peers, for obvious reasons. He doesn't jump or run. He walks very slowly. And he certainly can't identify shapes or colors. He is, however, way ahead of all expectations of a blind kid his age. He can get around our house unassisted, is starting to use a white cane effectively, and has an incredible memory. He also has an extensive vocabulary and speaks very clearly using correct grammar. His impressive accomplishments left us wondering what to do about school. We had always expected that we would send him to ISBVI and had never considered alternatives. But we started to wonder if he would do OK in a regular school.

In May, Matthias was evaluated by the school district as part of their IEP (Individual Education Plan) process. Matthias impressed everyone involved with his evaluation. When it came time for his meeting, it was obvious he had made an impression. He was, of course, invited to attend ISBVI. Our surprise came when a teacher of the visually impaired, named Nancy, gave us her thoughts. She was also impressed by his intelligence and thought he could do well in our home school district. We discussed it further and decided to give it a try. We know that ISBVI can do a fantastic job, but we want Matthias to have an opportunity to thrive in the sighted world.

In August, Matthias will begin attending an Early Childhood classroom for our district at a school close to our home. He will be with other kids with various disablities, physical and developmental. He is the first blind kid they have ever had. He will be there 2 1/2 hours a day Monday through Thursday. He will see Nancy everyday for about an hour, an occupational therapist once a week, and an Orientation and Mobility (O&M) Specialist twice a month. O&M is learning how to get around for the blind, i.e. cane travel and things like that.

So this blog is intended to keep track of his progress. It should be an interesting ride.