Assemble With Care

Today too many puzzle pieces fell before me, scattering at my feet. I sit here trying to piece them into an image that makes sense; but they don’t seem to form the same picture.

I woke up with a headache because I didn’t drink enough water after my 8:30 hockey game last night and of course Elias was in bed with us by 4:00 a.m.

We had an 8:00 a.m.appointment at a medical center that specializes in children with special needs, so before my brain even caught up to the fact that it was now Wednesday, I found myself sitting around a conference table discussing Elias’s brain. Overall, the meeting was both helpful and hopeful but it is still hard to review Elias’s history, to place labels on my only child.

I no longer recognize my son in his medical files. That patient, that sick kid, that boy with brain damage, that special needs child, is not Elias. And yet every word said in the meeting is accurate and true.

It’s all perception. 

What do you see when I say chronic lung disease, central nervous system dysfunction, cerebral visual impairment, Neurodevelopmental Disorder, feeding dysfunction, and Cerebral Palsy?

All these medical labels now describe my son but they don’t really say anything about him. They’re just pieces of the puzzle.

I understand why we need the labels. Insurance companies won’t pay for developmental delays but will pay for dysfunctions. As a mommy I like the word "delay" much better than "dysfunction" or "disorder" even if all it is doing is delaying my ability to fully comprehend my son’s disabilities.

There are no defined limits to what he can or can not do and some of these terms feel claustrophobic.

I’ve always been a bit uneasy in small spaces especially if I can’t see a way out. 

A ray of light please.

The doctor did say he feels hopeful about Elias’s ability to walk some day. And hopeful about the connections his brain continues to make. He commented on Elias’s humor, his use of the word cool, his joy in movement, as signs that there is more than a ray of light up there but multiple rays making connections. The hopeful-helpful part of the meeting this morning was that the folks in that room saw Elias as more than his oversized medical file.

All the jumbled puzzle pieces may form a picture after all:

Comments

[Laura/PinkFontGirl]

:) tell Elias i have a poncho like that. only mine is a different color.

[Andi]

What a beautiful child! Thank you for sharing your story, and his.

[Betsy in VA]

I am so happy to see this beautiful little guy! what a joy...I saw him when he was born and haven't again until now. He's made my week. Love ya!

[Max]

What a cutie and such a sweet, happy picture! Here's to much adventure and many mooses for your family :)

[Tara]

Your son is so beautiful, and from your stories (he says "cool"!), he's obviously so much more than his medical history. What a blessing!

I'm really enjoying reading your blog. Thanks for overcoming your technophobia to share with us.

[Elizabeth]

All I see is a beautiful, curly-haired angel enjoying a beautiful Spring day! He is obviously so much more than just a collection of diagnoses. I'm glad you're writing for ClubMom.

[Kelley Bogardus]

You have a beautiful son, and I think you are both marvelous parents. I am so touched by your writing...so much so that I am supposed to be working right now and I cannot stop reading. Thank you for sharing, Christy. You are a beautiful person.

[Cathy]

you are a really good writer. I just found you tonight and (not your fault) I have been crying. He is beautiful and I can really feel your love for him - all of him. Just thought I would de-lurk. (I am in Calgary, Alberta Canada mom of 3 boys one who has Autism spectrum disorder - crazy blog world!)

[Christy]

Cathy, I'm glad you found me. Thanks for letting me know you are out there.

[Jennifer]

What a cutie! Thank you so much for sharing your story. He is precious, just look at those curls!!!