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Thursday, June 26, 2014

My Connection With Disability: An Introduction

The Summer Blog Hope Series is going to be a challenging one!

Bloggers are going to work their way through a whole arc of disability connection by sharing their stories over several preset prompts.

The first prompt is My Connection With Disability: An Introduction

If I have any first-time readers to my blog I will start by saying that my connection with disability is being a parent to a child who has Down syndrome.

Prior to that I had no real involvement to the disability world, or community. (I had a grandfather who had Parkinson's disease and a couple of strokes, but not living near him or being able to visit often, I didn't have as direct a connection with disability as I did when I became a parent.)

Kayla is my first-born child and we suspected she might have Down syndrome when I was pregnant with her. I had the triple screen blood test which came back as 1 in 88 chance of having a child with Ds. We declined an amnio. Level 2 ultra sounds didn't reveal any markers that gave us any more of an increased risk.

I didn't know anything about Down syndrome. Sure I had heard of it, and like many people from my generation I did grow up watching Life Goes On - so I knew one of the characters (Corky) had Down syndrome. Beyond recognizing the facial characteristics of Down syndrome I knew nothing else. I didn't know anyone with Down syndrome and there weren't any students with Down syndrome in any of the schools that I attended.

I didn't know anything about Down syndrome except to know that it wasn't something I wished for my child to have; in fact, every night after getting the results of the triple screen I would go to bed praying "Please God don't let my baby have Down syndrome, please let my baby be ok."

Waiting for Kayla to be born also meant waiting to find out her gender and the number of her chromosomes (although at the time I don't think I even knew that Down syndrome was the result of an extra chromosome.)

As soon as Kayla was born and I looked at her face I knew she had Down syndrome. I thought she had the tell-tale facial characteristics and there was no denying that I gave birth to a baby with a diagnosis. There was no denying that this was not how I envisioned parenthood to begin.

I really don't remember much of what I thought about Down syndrome, or what I thought it meant for Kayla, or what I thought it meant for me as a mother and of our future. I had nothing to go on, no expectations really. I just had a feeling of my daughter has something. It became this thing she had but I didn't know anything about it or what to do with it.

To read more about how I felt over the possibility of having a child with Down syndrome read my post "Guilt" (this became a story in the book Gifts).

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Meriah said...

wow, you have come SO FAR, Michelle, it's incredible. I'm in awe.

Melody Lynn said...

Love this blog. This is a great post.