Saturday, September 19, 2009

*I* am your advocate

Gabriel is five years, seven months, and one day old. Since I was 31 weeks pregnant with him, I've been advocating on his behalf. It started with the doctor who wanted me to abort him and has gone from doctors, therapists, family, friends, and, most recently, school faculty.

For those who are unfamiliar and are hesitant to ask questions, allow me to explain. Gabriel was born with Spina Bifida on the L5-S1 region of his spine (nearly his tailbone) Because of the S.B., he was also born with hydrocephalus and Type II Chiari Malformation of the brain. The three of these combined had the potential to be a serious disability for him, however, by some miracle of God, it hasn't been. He walks, runs, jumps, uses the bathroom, has fine motor skills, is above average in intelligence, and other than wearing an orthodic brace on his weak ankle and seeing four thousand sixty two doctors once a year, he's a pretty typical five and a half year old.

To be honest, the doctors and therapists he sees are flabbergasted. They have NO clue why he can do all of these things and why he does them so well. Gabe's neurosurgeon, whom we refer to as "The NeuroGod" (because he's absolutely amazing) always smiles and says "he's just our little miracle" this man has been working with children who have spina bifida for nearly 30 years and can't explain it. Gabriel's physical therapist, another amazing individual, can't explain why Gabe can walk the way he can, or why he can skip, jump, hop on the trampoline, or play soccer like a pro (no really, the child is a soccer whiz, it's insane). Gabriel's nephrologist (aka the kidney/bladder/bowel guy) does not understand why he has full bowel and bladder control because he shouldn't. The kidney reflux Gabriel was born with and SHOULD have need surgery to fix has gone why? WHAT?

I have a theory, actually, about why Gabriel can do all of these things and why he will continue to do these things. First off, in this family, we never underestimate the power of God. Never, ever ever. We aren't particularly religious, to be fair, but we are spiritual and we believe that God can and will do things for those who are faithful. Gabriel, for the record, means "Miracle of God" :D

Secondly, we've never told Gabriel that he wasn't *supposed* to do any of these things! We've never told him that he had spina bifida and he shouldn't walk, run, etc. He knows he has spina bifida, yes, because he noticed his scar one day and wanted to know what it was from, but he has no clue what that means. When doctors and therapists told us it couldn't be done, we disagreed with them, sometimes to the point where we LEFT their office to show that WE, as his parents, knew what was best for him and HOW to do it. (yes, we were, and continue to be, that arrogant) When people, both familiar and unfamiliar, criticized us and things we were doing with Gabriel, we proved them wrong; we let Gabriel and his accomplishments do the "talking" so to speak.

We've surrounded ourselves with people who believe in not only us, but more importantly, in Gabriel. We've made a point to cut negativity out of our lives; we don't have the time OR energy for that. People who speak to us rudely and treat us like we've done something wrong don't deserve or receive our time or energy anymore. In the beginning statements like "you did something wrong" "what did you do to screw up your kid?" and "how does it feel to know you did this to your child?" used to hurt and would keep me up crying. Going to appointments where we were told Gabe wouldn't be able to do x, y, or z would worry me for days...and if I'm honest, these things still bother me, but not nearly as much because I know that what George and I do for Gabriel, every single day is the "proof in the pudding" so to speak. We don't justify our actions to anyone. They can question and criticize if they'd like, but I don't respond anymore. I just don't. It's not worth it; focusing my energy on Gabriel (and his little pain in the butt sister ha ha) is what I do now.

Why do I do this? Why do I not respond anymore? Because I am Gabe's voice. I am Gabe's advocate. I am the one who has to speak for Gabriel and I ought to be doing it politely, or I won't teach him anything. I educate people, I respond to people's questions and pity politely. I smile when we're stared at, I pray for those who say nasty things, and I make sure, in no uncertain terms that Gabriel knows that I will always continue to fight for him and for what he needs. Even when Gabe is 58 years old, an old married man with maybe a grandchild or two, I will fight for him. There is no backing down, there is no backing off, Gabriel deserves, and will receive, the most that life has to offer and I will be damned if he isn't going to get that. I've never told him any differently and I'm not about to start to either.

Special needs parents MUST be the advocate for their child. Your child cannot speak for him/herself and needs YOU to do it. It's going to be unpleasant, embarrassing at times, and down right heartbreaking to do it sometimes; it's going to cause rifts in relationships (that probably weren't very strong to begin with) it's going to cost money (oh yes, doctors and therapists are expensive and a lot of times insurance companies do NOT like you switching doctors because you didn't agree with the doc/therapist) and, quite frankly, it's going to be exhausting and very lonely sometimes...but we do it for the good of our children. We do it so their voices are heard. We do it, not for ourselves, but for THEM...because at the very least, they deserve it.

*As a heads up, as it gets closer to October (Spina Bifida Awareness Month) I'll be doing more posts like these; Special needs parenting is a huge part of the Witkowski Clan's life and I'll be expressing that more and more in the coming weeks.


erin said...

Bravo, Witkowskis! Your courage and determination continues to amaze me.

djcati said...

Hey! I found your blog through the BADD10 page on "Diary of a Goldfish", just wanted to let you know that. I know this is a totally random post to pick to comment on, but it's the one that made me realise I wanted to while clicking on random tags. I'll definitely be reading much more over the course of the evening.

...which sounds kinda stalker-y, sorry! It's just that you're a) a good and interesting writer! which I don't always find with random blogs, and b) you're writing about a subject particularly relevant to me -- I have spina bifida myself and, like Gabe, apparently defied a lot of expectations growing up. My mum was kinda like you, I think; she never told me I couldn't do something just because of my back (even when I insisted on going on upside-down rollercoasters despite the warning signs/etc, ha), and while she answered my questions and found out stuff she didn't know, she didn't make a point of telling me there was something "wrong" with me or anything.

Basically, you sound like a cool person, as do both of your kids, and I wish you all the best in life! etc. :)


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