Okay. So firstly, yesterday’s Young Athletes meet was AH-mazing. Again!
I had no idea my heart was so big but I just love all of those little kiddos. And now my crazy side-kick co-coordinator is using my sappy against me and trying to talk me into bumping up the cap from 15 athletes to 20! Yikes!
Oh, and I hitched my back when I bent over to help an athlete hurdle. I wasn’t even picking anything up! All I did was bend! Seriously thought I might not be able to bend back the other way again! Sheesh. Guess that’s how you know you’re over 30, right?
But today is what gets to me.
Trevy has his annual Developmental Pedi appointment. I love Dr. Development. She’s so kind and thorough.
It’s just the information I leave with that I’m not the biggest fan of. And it’s been lingering…setting up camp…in the back of my mind for days now. Is this the week? The one where his Globally Delayed label changes to something more clinically tangible? Globally Delayed sounds so much less ominous to me than MR. Kinda like Infantile Spasms does to Catastrophic Epilepsy. Not that we aren’t fully wrapped around who Trevy is. Even thing that you’re fully aware of take time to digest when they hit you in the face. There’s just something about med-speak and labels written in no-going-back black & white that still gets to me.
He’s doing so good!
We hear that all the time. No really. All.The.Time.
And he is. In a way. But good does not equal miraculously fully recovered as if he’d never had a seizure in his life.
When I’m totally honest with myself (with you) I hoped he’d be further along by now. It’s been two years since he survived the Nightmare-Miracle. I thought the gap between him and his peers would grow smaller. That he’d inch closer and closer to them. And maybe even breech the gap entirely?
The gap is still there.
The difference between before surgery and now is that the gap has stopped spreading so aggressively.
He’s just kinda staying right around two years behind them. Give or take.
One of my dearest and sweetest friends wrote my heart in a post recently. Especially, when she shares how in preschool it’s easier to “pull off appearing typical”. Trevy does that well when exposure to him is limited to an hour at church or what not.
At home he doesn’t have to pull anything off. He’s just Trevy. And he’s happy. SO happy. And funny too! And loved. Fiercely. And beautiful. And sweet. And so many many things that totally equal so much more than the sum of a few little words on a piece of paper.
I know that. Really. I do.
And it shouldn’t get to me because I know that. But sometimes…it still does anyway.
…danielle
Comments
I recently had a friend ask me what I do when people stare. She sometimes takes out a friend's severely CP son, and noticed many people staring. I told her that I often wonder when we are out and people ooh & aah at Emma and then ask how old she is, and my response is a truthful 4, if they really realize what they are seeing and how she isn't typical. I know I feel the stares when I take her out in her wheelchair/stroller (currently we take her in a baby stroller cuz it's easier/lighter). And to be completely honest, I don't do anything about the stares. People are going to stare. I stare at other SN kids. I wonder about their story and look at the EQ they have and try to picture how it might make our lives better. I try to think that Emma is a bright shining light that is able to teach every person we pass a little more compassion and empathy for those who are different. It helps to make things just a little more right.
Wow, I got off the subject.... ;)
Wendi...
You are totally right! He is staying the course. My dilemma is...once a child is around 6ish the brain stops being so plastic and you kinda are where you are. That's how you can have people with Intellectual Disablities who are higher functioning than others. Right now Trevy's future is wide open though...and I do need to stop trying to figure out what that means.
...danielle
Second - You need to take care of your back because that's what young, gorgeous, fabulous women need to do. Duh.
Third - I think words will always have a way of being painful. I only allowed an MR diagnosis when it was the only way to get a service we needed. I had the report mailed to me, made my husband open it and file it. I refuse to believe it's who my son is. And yes, the gap sucks. There's no way around that. It's a good thing we're so great at celebrating who are children are!