And really, I struggle with the concept of "awareness". What am I trying to make people aware of? PMG? Cerebral Palsy? While both of those are worthwhile causes, I just don't know if that's what I want to bring "awareness" to.
But it kind of struck me today as I dropped tooters off at daycare. One of his fantastic providers noticed my bracelet, and asked about it, so I told her about Gommy, his background our year, etc. Another one of his providers (and he loves them both) asked the same thing and I shared our story.
Both had kind of the same reaction...a mix of sadness and empathy for our "plight". And this isn't the first time that out story has gotten such a reaction. I cant blame folks for their reactions, and their empathy is very much valued--we've got a fantastic support network of folks who care about us.
But every time I get that reaction, it creates a sense of dissonance in me because I'm not sad about who gommy is. I've gotten past those shocked/surprised/sad emotions, and I'm pretty damn happy about our life. I'm pretty damn happy with who Gommy is, and I'm pretty damn happy about everything going on in my life.
So I've decided that my "cause" that I'm looking to bring "awareness" to is that disabilities aren't a sad thing. Gommy's CP is not something we are burdened by. It's not something that we are depressed about or something we need sympathy over. In fact it's the direct opposite. CP is part of who Gommy is, and we celebrate everything...and i mean EVERYTHING about him. Case in point, as the kids grow up the smell of spit up makes me nostalgic. I'll sit there and sniff a bib that smells of spitup because it reminds me of my kids. I HAVE NO IDEA WHATS WRONG WITH ME EITHER.
Disabilities aren't sad, and folks who have disabilities and their family members arent to be sympathized with or pitied or anything like that, because hey, our kids are our kids and we don't love them despite what they're going through. We love them with it. It's part of them. And that's ok. No it's more than ok, it's fantastic. My son is who he is and he's a badass who pushes me to grow dailiy as a parent and a person. He's taught me so much about who I am and who I want to be. Everyone deserves someone in their life like that, and I'm just blessed that I have three people who do that for me.
So my "cause" is simply this. When you encounter someone with a disability, or someone who has a child with a disability, fight your inner instinct to go with the sympathetic head tilt when they tell you about it. Because they don't want that, need it, and quite frankly it makes no sense to them (at least it doesnt to us--and I dont mean to speak on behalf of all parents of kids with disabilities). Ask them about it because maybe they want to talk about it (and hey my kids are awesome and I will talk to you about it every day until you are tired of me). But don't ever be afraid of asking the "wrong" question because there is no wrong question. If you're asking about my kids, that means you care about them and that makes us friends.
Sure life might be a tad bit busier with therapy everyday. Sure spending 10k on medical expenses this year (yeah. seriously, holy hell) is a bit much. But at the end of the day I get to go home to a gommy and a tooties. I get to watch them wrestle eachother. I get to throw gommy up in the air, and wrestle him on the bed and make him laugh until he farts. Then I get to throw him around and have him spit up on my shirt because he just ate.
but then I get to sniff my shirt because the smell makes me smile. And that's pretty f'ing cool in my book.
