Preparing for Battle

We are getting to the hard part of Gabe’s spina bifida. The early years, while tense and filled with worry and grief, were blessedly easy compared to what we’re dealing with now. As a small baby, no one really paid attention to the fact that he wasn’t walking or crawling as fast as the other babies; no one noticed his awful fine motor skills; as far as anyone could see, he was just a baby.

Now he’s six, nearly in first grade (oh my) and it’s becoming more and more evident that Gabe is “different” Watching him on the playground yesterday, smiling, happy, covered in mud and mulch, I couldn’t help but think that he is so amazing. He knows his limitations; he knows what he can do, what he can’t do, and what’s worth TRYING to do. The playground we were at was a “zero barrier” playground; meaning that it’s totally handicap accessible (while I’d disagree with that statement, I will say that it’s MORE accessible than most playgrounds) There were stairs with railings that Gabe could use to get up to the slides, there was equipment on the ground that he could use easily, over all, it was a really nice park. But still, he struggled. He struggled to climb up the rock wall (even the one with “steps” made for smaller children), he wasn’t able to play “chase” with the other kids his age (a huge deal for small kids, they LOVE to play chase) and he was slower on things.

But still…he smiled, he waved, he said hello to people of all ages. He was genuinely happy to be playing at the park, doing his thing, completely oblivious to what his limitations were…or was he? I don’t think he was, I could see it in his face when the kids went to place chase that there was nothing more that he’d like to do than run after them, keep up with them, and not trip and fall when he got up to a good speed. I KNOW that’s what he wanted to do, but he stayed on the slide, smiling as he went down, watching them run off. He watched Bitsy climb up the rock wall seemingly effortlessly as he stood on the ground smiling at her. He’s proud of her for doing what he can’t; in fact, on more than one occasion, I’ve heard him tell her “Good job, Bits, that must have been hard” I don’t know how he stays so positive when most people would be pissed off or depressed about their situation. Lord knows how upset I’d be if I was in his position. As it stands, I get upset when I try to do something but can’t. Even if I know I can’t do something, I still try to do it.

How is it that at six, he already knows more than me? He already knows what his limitations are and how to deal with them? He’s so stoic, brave, and strong in the face of his disability. How has he, in six small years, accepted his fate when even I haven’t? How is he able to be comfortable in his skin, when clearly I am not comfortable FOR him? How’d he already learn which battles to pick? How does he know that fighting his body to write letters and numbers and read are the battles to wage rather than fighting with his body to climb a rock wall?

My mom told me, from the get go, that Gabe was “given” to us to teach us a lesson; here all along I thought the lesson he had to teach was patience (Impatient? Who me? Nooo) I don’t think that was the lesson I was supposed to learn. Maybe the lesson I have yet to learn is when to fight and when not to. Maybe I need to learn to let go of some of the control and just enjoy myself. Or maybe that’s not it either; maybe like all other things in life, Gabriel is showing me that life is a learning experience; that some days are good, some days are bad, and some days are downright awful…but smiling and playing in the sunshine are always good things to do. I guess we’ll see as time goes on, won’t we?

Hmm

A while back I was contacted about participating in a study of families with spina bifida; at the time I thought it would be a great idea so I tentatively said that I'd do it. It was a relatively easy test, mostly just paperwork and a dna sample. I could do that, easily, right?

Well...not so much. Why not you might be thinking, it's very easy, you just said it yourself.

Physically this survey/study IS easy, emotionally not so much.

They send you the questionnaire so you can familiarize yourself with it before you speak to the researcher on the phone. It started out innocuously enough. Family history info, pregnancy details, general health of momma etc etc, but then they got to the harder questions. "Did you do x, y, z while pregnant?" "Did anyone in your family go prematurely grey?"(actual question-the answer to that one is yes :/) etc etc and it started to bring back painful memories from over six years ago.

I'd say that 98% of the time, I am completely and utterly at peace with Gabe's disability; I've stopped searching for answers and trying to find someone to blame for it. Long ago, I learned that there is NO sense in trying to find a scapegoat or someone to be angry with over our circumstances. Many nights after finding out Gabe was going to be born early (ON PURPOSE! Yikes) to have his back fixed, I tossed and turned worrying about the what if's and what did I do to cause this type thing. It was awful. It was quite frankly the worst part of my life and still continues to be to this day.

I have blocked out a lot of what happened in those few weeks after the diagnosis and the first few weeks of Gabe's life. I remember bits and pieces here and there, mostly because of what others have told me and from seeing pictures, which is both a blessing and a curse. Most of the memories of that time are NOT positive for me and I'm very glad I don't really remember them, but sometimes I wish I remembered more.

Reading all of these questions brought back the overwhelming grief and depression I felt when I found out about Gabe's diagnosis...and it made me wonder how long I'll be mourning what "could have been"? Like I said, most of the time, I don't even think about it because Gabe is a pretty damn amazing kid, but sometimes, just sometimes it sneaks up on me and I start to wonder just how things COULD have been and what I could have done to prevent all of this (and the answer to that question? Nothing. Absolutely NOTHING. I took folic acid, I was very healthy, I had no fevers while pregnant, neither of us have a family history, I wasn't on any drugs while pregnant or even before conceiving him. Our doctor told us in some cases, spina bifida just happens and Gabe is one of those cases)

Thankfully these moments are few and far in between because I choose to focus on how amazing Gabe is and how he continues to astound all of us including his doctors continually. I focus on the positive and what HE can do, rather than what he cannot do...

It was a bug day

My friend and I have a little "code word" system for how our day has been. If it's a "bug" day, it's been bad, if it's a "windshield" day, it's a good day :) (as in: sometimes you're the windshield and sometimes you're the bug)

Yesterday was truly a BUG day. We had winter storm warnings in effect, we had to take Geo to work so we could use the car (yay one car families) and Gabe needed to see his occupational and physical therapists. As it turned out, Gabe ended up needing to be casted because his range of motion was in the negative degrees (Normal range of motion is 20 degrees, he was in a BAD way yesterday) We ended up at the rehab hospital (where he does therapy) for almost five hours, which was fine since it was snowing and blowing like crazy outside.

On the way into therapy, we stopped to have lunch and SarahAnne asked me, quietly, "Why does bruhby have to wear braces on his legs? They aren't nice and they hurt him" How in the world do you answer that? I answered with "His legs aren't as strong as they should be, so the braces help him walk and run better" She accepted it with a shrug but hugged him when we got back to the table.

Then at therapy, upon learning he'd need a cast, Gabe flipped out. He told me in no uncertain terms that he was NOT getting a cast and he was not going to be happy if he did. Bits, the little momma, patted his back and said "It's okay, it's alright, it will help you"

We got the cast and headed home, with one very angry Gabriel in the backseat. He and I had the conversation I've been dreading for the last six years. The "why am I different" conversation I was hoping to NOT have to deal with a)right now and b)by myself.

It went something like this:
Gabe: I hate this stupid cast and I don't want it on

Mom: I know honey, but you have to, it makes your leg stronger

Gabe: Why do I have to have a cast, no one else does?

Mom: Because Gabe, when God made you, you had a hole in your spine, it's not fair, it really stinks, but it happened and now we deal with it and every once in a while you're going to have to have a cast so your leg works like everyone else's.

Gabe: I DON'T WANT A HOLE IN MY SPINE! IT'S NOT FAIR I DON'T LIKE THIS HOLE

Mom: *trying not to cry*

Gabe: It's not fair, no one else has a hole in their spine and I hate this. I don't like this cast and I don't like the hole.

Mom: I know Gabe, I know, I don't like it either.

And then he was silent for the rest of the trip. If you know Gabe, you know this is *not* normal. The child is a chatter box, especially in the car. My poor baby, in so much pain, both physically (it hurts to stretch like he was stretched) and emotionally. It had to be the worst feeling I think I've ever experienced, nothing I could do or say would ease his pain. Truly, a bug day :(

This morning, thankfully, he's in a better mood. He just took a marker and wrote his name on his cast and said that it's "cool" because he knows he's stretching and growing, so that's something. Maybe this morning's excitement shook him out of his funk-literally shook him. We had an earthquake this morning. First a blizzard, now an earth quake. Yes, in Northern Illinois, a 4.3 on the Richter scale, earthquake. So weird.

Today has the making of a "windshield day" for sure...I just hope it keeps up that way.

Hey Spina Bifida...

Bite me!

Six years ago, we were gearing up to have Gabriel; a baby, we were told, who more than likely wouldn't walk, wouldn't toilet on his own, and would be very mentally retarded. The doctors couldn't have been more wrong...and as proof, how about a few pics of my "never gonna function normally" kid shoveling snow...