Saturday, January 31, 2009

Another Post About Down Syndrome Lists

I made a comment the other day in a post with a list. I said, "Raising a child with Down Syndrome is not without it's check lists." I want to qualify this statement a little bit.

Thursday afternoon Ray came home from work early, so I took the opportunity to leave Calvin with him and take Charlie to the hospital for his blood test and neck x-ray. Both of these tests are simply routine things you do when your child has Down Syndrome. They are on the health list.

It was a beautiful afternoon. The sun was out and cut through the afternoon air, casting sharp shadows on the pavement. We live near the hospital, so ditched the car and enjoyed the walk. I waved to a friend who drove by. Charlie chatted to himself in the stroller in front of me.

When I first became a mother it never occurred to me that one day I would very casually take a walk to the hospital on a lovely afternoon with my son. I would have thought it unlike me to calmly guide my toddler through the motions of a blood draw to check his thyroid, and an x-ray to make sure his neck vertebrae are sturdy and stable as every three year old's bones should be. Yet, there I was. Casual and calm. This is just what we do, Charlie and me.

In that moment, as we neared the hospital, I was struck with just how normal our lists have become... But, not always so.

I can remember when we first received the lists. It was in the three weeks between first hearing the doctors suspicions that Charlie had Down Syndrome and when we finally got that call to confirm what we had come to accept. In those first days, the lists seemed overwhelming. They seemed endless. I could certainly love our little boy, Down Syndrome and all, but could I hack the lists?

Well, the answer is Yes. I hacked it. I hack it. I more than hack it. I keep the lists close to my heart. I memorize them. They are just part of what we do for our Charlie. To keep him healthy. To give him the best education. To help guide him in his development.

These lists, they are our normal.

So, please understand, when I say something like "raising a child with Down Syndrome is not without it's check lists," know that I say it with a half smile and a twinkle in my eye.

I love this boy so much. He is my heart. Lists and all.



Elizabeth said...

Oh Kim,
You are an amazing mother; and I feel privileged to know you and your family! I really admire you and all you do for little Charlie!
Love you.

Kristen said...

What an awesome post! We love Charlie too!

Mama MollyJoy said...

charlie is so lucky to have such and amazing mother! you are inspirational, kim. you've touched my life and charlie and calving touch my soul every time we meet! xo

SunflowerMom said...

Very well put! It's amazing how quickly and easily we adapt.

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