Reincarnated As A Mother

Thursday, April 2, 2015

I Cracked

So I completely lost it today at the hospital.
The runny nose to match the runny eyes kind of lost it.
The totally humiliated myself in front of a stranger kind of lost it.
(disclaimer:  picture taken after fled  left the office). 
 I don't know if you remember but a month or so ago,
we got a letter from the Idaho Disabilities Commission 
saying now that Kean is five we needed to have him
re-tested for Down syndrome and Global Delay to continue to
qualify for therapy
(what, like the Down syndrome was just gonna go away?).
Anyway, the full IQ testing required is usually only offered
as part of an 8 hour psychological workup and neurological testing.
Earlier this week, we met with the doctor for observation to confirm the fact
he'd never be able to make it through 8 hours of testing.
So today's testing was "only" supposed to last 3 hours.
Ummm, we were done in one.
And this picture is probably one of the highlights of the session.
It was awful.
No, make that horrible.
Once a week he takes a drug that supposedly makes
everything in his body hurt.  Well, he took that last night.
Who knows if that is why he was so ornery or if he is just 
going through his "terrible twos" (at age 5)... but he was a total pill.
He threw all the toys the doctor had for the testing.
He'd just look at her when she'd say "put the horse behind your back".
(He finally picked up the horse but had no idea what to do with it-- 
and that was one of maybe three
times he cooperated).
After what seemed like forever of him not cooperating, he burst into tears, sprawled
out on the floor and sobbed.
I then made the mistake of saying that this is my huge fear for
him since he is supposed to start school after he finishes Chemo
in the Fall.
He is so not ready!
That's when I totally started bawling.
Ug.
I just don't know how he will ever make it through school.
The good news is we finally got him (and me) settled down.
Nothing like singing every song from The Sound of Music.
Thankfully, the doctor joined right in.
Yep, she should get awarded an extra few letters after her name 
for that one.
The better news is, she talked to the state (she's had one other child
like this who was unable to be tested) and she is having me fill
out several booklets with a gazillion questions about his abilities
and lack of abilities.
She is also going to collect evaluations from his therapists
and put together a report from all of that and what little
she saw.
I've realized tonight, it really doesn't matter
whether she was able to get much out of him.
The bottom line is-- he still needs a lot of therapy
and intervention (especially with the Chemo slowing him down even more)
and no matter what, she would have figured that out.
I think I had one of those days today where I realized
just how much work we have ahead of us to get him where he should be.
Blasted cancer!!!

2 comments:

Mark Lewis said...

Lonni...you are human and a mother and a sweetheart so don't ever apologize for being you and being the number one advocate for your son! Jesus turned over the moneychangers table in the Temple, so if he can lose it, you are entitled. Prayers for you and your family!

ML

doug cohen said...

definition of true love