Thursday, April 23, 2009

Failure to Thrive

So after being denied for Medicaid...again...We're going the Katy Beckett route. This route can provide Medicaid to people who make too much money, but who have children with severe enough disabilities. I think it's funny that the government thinks we make too much money with my lone teacher's salary.

Amid the mass of paperwork is the Physicians Evaluation. Today, Chris took the boys to our pediatrician, the wonderfully empathetic Dr. Copeland.

As I read through the long medical history of both my boys, my eyes caught the words "Failure to Thrive" on Jeffy's evaluation. Our rheumatologist was the first to use these words when referring us to the neurologist. Jeffy is in the 1st percentile for weight. I knew he was small...I just didn't realize he was that small. But then again, as I took him out of his evening shower (he loves them), I was able to carry him easily in my arms, just as I always have, just like a newborn baby. He is so tiny.

I also had the strange thought that I sometimes get that wonders how I would have reacted had I, before children, before marriage, looked into the future on this day-what would I have thought about the words that stuck out?

"Motor Delay"
"Expressive speech delay"
"Failure to Thrive"
"Metopic Craniosynostosis repair"
"Sensory Integration Disorder"
"Autism"

My beautiful boys.

What has invaded their bodies and minds, bringing these upon them? And what has my own part been in them?

I feel some days, like today, that Andrew was robbed of his mind, and Jeffy was robbed of his body. I see these words and scoff at my own naivete that assumed my children would be completely healthy, without flaw, without pain. That I could hold conversations with them...that I could make them understand me...that they would grow up, graduate from college, marry, have children...without even a thought about just how many thing have to come together for life to work like that. But this is foolish thinking, weak thinking, negative thinking...For the time being I would be excited for my dear Jeffy to walk without pain...or even just to WALK, for Andrew to tell me how he feels, or to care how I feel.

But in the meantime, I will seek all the help for them I can. And I will remember what I already know...that these labels come nowhere close to defining my sons. My Jeffy, with his beautiful big brown eyes, infectious giggle, and funny little gait. My Andrew, with his irrepressible joy at the unseen, his songs, his dances, his amazing strength, and his warm snuggles.

And so I look forward to the day when we will all be restored from our weak earthly vessels into our new heavenly bodies, and where we may all understand and be understood.

2 comments:

Dee Wirick Davis said...

You do have two wonderful little boys whom I love so much. I pray that you will get answers for Jeffy and that Andrew will continue to move forward in his development. I know the road seems heavy but you are a great mom and don't forget it. Love, Mom

Sherry said...

wow. you write so beautifully. seriously. what a great mama you are, your boys are blessed.

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