Sunday, October 7, 2012

31 for 21: Down Syndrome

If you have a child with different needs then you may very well already know that October is Down Syndrome awareness month (during October many bloggers blog daily - 31 days - for Down syndrome - Trisomy 21). Juliana doesn't have Down syndrome, obviously. But there was a time that I wished she did. There's a whole different layer of complexity when your child does not have a diagnosis and there was a time when I longed for answers and support from other parents. Fortunately we have all of that now.

Sometimes I pause to think about the parents out there who have just received a diagnosis. Maybe it's a prenatal diagnosis. Maybe it came as soon as the baby was born. Maybe it came months later. There are certainly difficulties within each of these scenarios. I know that it's easy to feel hopeless, to feel like a failure, to feel like you as the parent are personally responsible. All of these feelings will diminish with time.

So why am I doing a 31 for 21 post? Because I wanted to share this incredible video with you. Heath White was a man driven to perfectionism. He later had a daughter with Down syndrome. He wanted his wife to have an abortion but she refused. His daughter turned his world upside down and he's all the better for it. This is a really beautiful story, enjoy:

This is the type of awareness that I'm all for. I don't really care much for most "awareness" type things - I personally don't see a lot of value in awareness alone. Webster defines awareness as "having or showing realization, perception, or knowledge." Personally, I don't care if anyone beyond my circle of support has knowledge of Kabuki syndrome. What I do think is needed is appreciation for people who face different struggles. I also hope that people will learn that having a child with a disability is far from the worse thing that can happen to you. Let's appreciate people for who they are, even if they are different. I promise that we will truly all be better for it.

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