Monday, September 12, 2011

it still gets to me


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. 





Andi S said...

I hate the labels! But I've come to grips that Emma isn't just GDD, she is MR. She has been stuck at 8-12 months of age for SOOOOO long (years). Sometimes I wonder if she will ever progress, even just a little bit. Or if I will eventually have a 15 year old, a 20 year old, even a 30 year old rolling around my house. And it really makes the tears come (especially with the baby hormones lately).

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 Taylor said...

Okay, so his brain was put "on hold" by seizures for... about two years. And now, he's staying about two years behind his peers. Sounds to me like he's developing at a normal rate... but his developmental age is two years younger than his physical age. That's really not so bad, is it? As long as he stays at the same rate, eventually he'll reach an age where it won't matter so much.

Jonathan said...

Andi...I could just smooch you to pieces. I hope you know how much I love you and your family. You actually hit on a subject that I really need to write a post about someday soon. I hear people complain all the time about the staring...and always feel guilty because I could be the one staring. And just like you curiosity is my motivation.


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.


lisa said...

I don't know that this stuff will ever NOT hurt, KWIM? Julia looks so normal on the outside, and is also doing so well, yet nowhere near where a "typical" 5 year old should be. I notice kids overhearing her on the playground and the quizzical looks on their faces when they hear her talk...and yet when she's with us her language issues don't seem to matter very much. So much of the time I honestly believe that none of what she's been through matters, she is an amazingly funny, loving little girl so who cares if she's not typical. But kindergarten is approaching, and getting older, and all that goes along with that...I dread the future and wonder will she have friends, how will she feel being so different, etc. One day at a time I suppose. Sorry to hijack but between yours and Elaine's posts, these things have been on my mind! Love to you guys!

Adesta said...

While my Marissa's situation is certainly way different than everyone else's here, it still hurts to hear from her teachers and the IEP people at school when they say how delayed she still is in her learning. I never knew how much being a completely non-verbal 4 yr old could effect her once she got to school. And yet, I still find myself asking why we got her speech help because now she never shuts up....even in her sleep!

teamaidan said...

First - You need to listen to your co-coordinator and rock that YA group out cuz it clearly brings you joy.
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!