Awareness

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May is Williams Syndrome Awareness month.

Please read this blog post by Terry Monkaba, Executive Director of the Williams Syndrome Association –> A Special Awareness Campaign. She writes about Jonathan Martinez, a nine year old boy with Williams syndrome who overcame heart surgery but tragically lost his life when a man came into his special education classroom in San Bernardino and began shooting. I know that many people heard about this senseless tragedy in the news, but I don’t know if everyone realizes that Jonathan had Williams syndrome. My heart absolutely breaks for his family.

When I think about awareness, I think about how far my own family has come in terms of recognizing, then accepting, then championing people with Williams syndrome. We were not very well-educated about people with special needs, especially the older generation of my family. However, we’ve come so far over the past couple years while we watch Emmy grow. But there is an element of sadness too. I have lost two of my biggest champions — two people that eagerly awaited my blog posts as if they were hot off the presses. Two people that loved Emmy beyond words.

My grandmother, Simone, died in 2014 from cancer. And this past Mother’s Day, my aunt, Eva, died — also from cancer. These are two people who didn’t know much about special needs before Emmy but, boy, did they embrace her. When Emmy had heart surgery in 2013, my grandmother was in the hospital almost every day of the 30-day stay. My grandmother loved to talk, but she would come and sit quietly by Emmy’s bed — just watching her. She also filled up huge, heavy thermoses of tap water, which she would bring to the hospital every day to keep us hydrated. She dragged the thermoses on the bus as she made the hour-long trek back and forth, and I would tell her that she should leave the heavy thermos at home. They had water in the hospital, and I hated the idea of her carrying heavy things on the bus. But she wanted so badly to do something to help, as we all watched Emmy lie there helplessly in the hospital bed.

When we finally left the hospital, my grandmother was right there alongside us. I remember her saying, “So Emmy doesn’t have Williams syndrome anymore, right??” She thought the heart surgery might have cured her of Williams syndrome. My grandmother was born in another country and spoke with a heavy French accent. She often searched for the English version of a word and, therefore, didn’t fully understand the complexities of Williams syndrome. But she thought Emmy was absolutely amazing. And she loved, loved, loved reading my blog.

My aunt, Eva, had been asking me to write a blog post for the past couple months, but I was so busy with the kids and their schools and activities… I never got around to it.

Sitting by her hospital bed on May 14, the day she died, I told her that I would get back to writing. So here I am…back at it. I know she would have loved to read this. She would have loved to see any picture of Emmy, even if I just wrote “BLAH BLAH BLAH” below it. Like my grandmother, Eva was a big supporter of Williams syndrome. It’s interesting to see how far everyone in my family has come from my initial reveal of, “I have big news. Emmy has something called Williams syndrome…” to understanding more of what it is, seeing Emmy for who she is, and learning more about Williams syndrome every day. I’m so sad that two of my biggest supporters, my grandmother and aunt, won’t get to read this post. I hope they are looking down on us — and Emmy as she grows.

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