Monday, April 8, 2013

"I am afraid of Down syndrome."

To the person who Googled, "I am afraid of Down syndrome," and landed on my blog, this post is for you. Even though I have found immeasurable joy and beauty in the anomaly that is Down syndrome, I do not fault you for your fear. 

I understand it. 

When Eon was born and we were told just minutes later that he most likely had Down syndrome, I was terrified. It was as if all the air had been sucked from the room and I could barely breathe, suffocating from the weight of it. 

The fear did not instantly abate when I held my sweet baby for the first time and realized that he was just that, a baby, but it did recede a bit. 

I spent a lot of time in those early months researching, blog hopping, and soaking up my new baby boy. I also spent a lot of time educating...myself and others. I needed people to see that Down syndrome wasn't scary. I needed them to understand that what they were really afraid of was the unknown. I needed for them to see that the face of Down syndrome is so much different than it was even twenty-five years ago and many of their preconceived notions were just  inaccurate.

I wrote posts here and here communicating similar ideas.

But after parenting a child with Down syndrome for awhile, it takes a back seat to "real life." The fear has disappeared, the "specialness" has worn off, and it has just become a part of life, rather than the whole. 

I do understand your fear. I hope that I never forget it, because its memory makes our life with Down syndrome so much sweeter. The life that my mind conjured up in the middle of that fear looks nothing like the life that we live today. 

I now have two sons with Down syndrome. But I also have six typical kids. Sometimes the special needs of the younger boys are the focus of the family, especially if there is a health concern or new therapies needed. But, usually, it's someone else's turn. The older boys (both "typical) need to learn to get along with the neighbor kids or stop fighting amongst themselves. Or the two-year-old needs to stop using a pacifier. Or one of the teens is on a health food kick and using up the grocery budget on specialty foods and must be made to see reason.

Our lives are not about Down syndrome. 

We are not limited by it, either. I cannot think of one thing we have decided we couldn't do because our boys have Down syndrome. It is just not that big of a factor in our lives. If anything, because of the club-like atmosphere of the Down syndrome community, it has opened up more possibilities, more opportunities for us to spend time together, meet new people, or try something different. 

The initial response of almost all the parents I know, when faced with the diagnosis of Down syndrome, was fear, just like you. The majority of those parents now assert that, if given the choice, they would not take away Down syndrome. They would choose their child exactly as they are.

As for us, Down syndrome has only added to our lives. It has not subtracted. I have found the fear to be unfounded.

Be brave.

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