Sunday, June 22, 2014

What matters.

So there's always that feeling. If we bring him we'll be excluded or he'll be ignored. If we leave him at home, we'll be more approachable. But then we have the guilt of leaving him behind.

We attended the annual neighborhood block party tonight. All of us. It takes a bit of gumption to roll up to the intersection that's been blocked off for the party. We go every year, this year wasn't the best.

I know in my head that I shouldn't let any of my self conscious feelings bother me, I shouldn't let the stares keep me from being myself at all times, but tonight we were tired. And so was the party.

Joe left early with Dermot, that made me sad. Nothing there for them. How to you shoot the shit with the neighborhood dudes while holding on to the handles of your son's wheelchair? How do you gather close together and listen to the neighborhood gossip with your mom friends while turning off Dermot's feeding pump?

Much of this is being imagined by us, but it feels real. If you don't know me, are you going to walk up and introduce yourself while I'm wiping drool off my son's chin?

If it were me, ten years ago, I wouldn't have gotten near me and Dermot now. Too different, too scary.

I give people the benefit of the doubt most times because I remember who I was a few years back before I entered the land of disabilities. But at some point I'm going to need to decide that what I think other people might think of Dermot and or my family just doesn't matter. What I think of my family is what matters.

I love my family.
I love that my boys hold Dermot hand while he's having a seizure.
I love that my kids point out Dermot's past classmate with Down syndrome and go talk to her.
I love that they dared me to go off the high dive at the pool and I did.
I love that my oldest wells up in tears when he talks about his brother.
I love that my youngest showed a friend how to turn off Dermot's feeding pump when it's beeping.
I love when Dermot's classmates come and say hi to him when we're out in public.
I love that we all hold hands when we say grace.
I love when we dance. All of us. Together.

That's what matters.