Sunday, December 2, 2012

I'm confused

This weekend was the annual Illinois Spina Bifida Association's Holiday party; we have been invited in years past but have never gone, mostly because of my own insecurities. You see, while Gabe has spina bifida and definitely has limitations because of it, he's very VERY high functioning. We'd only been to one or two functions in the last eight years and there's been a lot of just being uncomfortable; having the kid who can walk/run/jump/use the bathroom on their own makes us outcasts in our own "community", even if it's NOT intentional. I get it, though, I do. I used to be very jealous of those who had kids without ANY disability at all; I think it's human nature to want what you don't have or at the very least HOPE you could have what others have...even if as we all know, things aren't always what they seem for others.

So yesterday we went to the holiday party and it was a pleasant surprise; there were quite a few children (and adults!) with spina bifida who were walking...heck there were even some kids with spina bifida RUNNING and I felt ashamed that I'd kept Gabe away from HIS community of people for so long. In the last few months he's been especially curious about other kids "like him" and this was the perfect opportunity for him to get to see some of them and interact...except that once we got there, he wasn't interested in interacting; he just wanted to see Santa and play on Unc's iPhone 5 (haha)

At one point after we'd been there a while he asked if I'd take him to the bathroom. We walked through a crowd of people, nearly got ran over by the cutest little girl in a wheelchair and did some people watching. Gabe is a very old soul for those who don't know. He's always analyzing and thinking about things and his perspectives on things are very mature for an 8 year old. I look at him and just know that he's so much wiser than I'll ever be or could ever be. As we left the bathroom, he said "mom, I'm confused" I asked by what and he said "I don't know, I just feel confused. There are people here like me, some who have the tubes in their heads [shunt] and some in wheelchairs and some with braces and some with canes and wow, I just don't know, I'm confused" and I'm not going to lie, my heart broke for him. For some reason I think he felt like he'd feel some sort of connection with some of these people; I think he thought it was going to be an instant "oh my gosh YES! these are my people" type thing and when it didn't happen...well, it was confusing. It's hard, as an adult, to not fit into a certain situation or group that you think you will and as adults we deal with the disappointment and realize that it's a part of life and we find our own group to fit into...but children don't have that experience yet and I could see in his little face that he was disappointed and a bit sad.

Overall the experience was a positive one; Ms. Wheelchair Illinois gave an amazing inspirational speech to parents about continuing to be an advocate for your children; to make sure you're never giving up on them and doing right by them and striving to make sure their lives are the best they can be...she was gorgeous AND smart (a teacher actually!!) Santa gave the kiddos nice gifts even if they refused to go near him (ha ha) and the food and company was nice...but we probably won't go again. It just wasn't for us; more importantly, it wasn't for GABE and we both knew it. I suppose at some point I am just going to have to let go and let him forge his own way, aren't I?

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