March is Trisomy Awareness Month

March is Trisomy Awareness Month!
SOFT, the Support Organization for Trisomy 18, 13 and other related genetic disorders. www.trisomy.org

Throughout the month of March we will be celebrating Trisomy Awareness Month. Our purpose this month is to shine a spotlight on Trisomy in all its varying “flavors” to help people see that our children are neither disappointment or a burden. Sadly, the first time most people hear the word “Trisomy” is when they are being told that the beautiful baby that they are eagerly awaiting has a one.  By this point their brains have gone numb, they are scared out of their minds and their world feels like it is spinning out of control. Nothing makes sense, their world has simply shattered.

Then there is the silence. The silence in the room because no one knows what to say. The silent scream in your head because the only question you want the answer to is, “Is my baby going to live?” and that’s the one thing that suddenly no one in this room wants to talk about, and worst of all, the silence in your heart because in that moment you realize that nothing in your life will ever be the same.

I remember laying on the table during our follow up ultrasound while the doctor and tech discussed the obvious syndrome “markers.” In the previous ultrasound they had found choroid plexus cysts in her brain, the two vessel cord that we worried would not provide enough oxygen and nutrition and, of course, my age, I had just turned 40. Then they mentioned something new, clubfeet.

I lay there listening, a bit like a bystander in the room, my world about to shatter. I was still naive and hopeful enough to believe that the “markers” were all just a coincidence. After all, any one of the markers on its own would mean nothing. But clubfeet, wow, that’s big deal. How will she walk? How will she dance? What kind of shoes will she have to wear to the prom?

When I look back I realize the absurdity of those thoughts. In those moments though, I truly believed that clubfeet would be the worst of our problems. Minutes later the game changed completely when we were told that the clubfeet weren’t going to matter because our baby was going to die and there was nothing anyone in the world could do about it.

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