Thursday, September 6, 2012

what's on my mind?

Yesterday, in the early hours of the morning, as I was nursing my littlest girl, I happened to scroll through some status updates on Facebook. Updates from friends from all walks of life. It was then that I learned that another sweet girl had lost her earthly battle to Rett syndrome. 

I didn't know Anna personally, nor did I know her parents. But, I had most definitely heard of them and have many friends who do know them personally. Anna's father, Manny, is also a camera man for the TV show, The View, and Anna and her parents were featured on the show last January.

A shortened lifespan is kind of part of the Rett syndrome package - every few weeks I get word of another brave girl who has passed on. And while I'm well aware of that fact, I still push it to the back of my mind. I try not to focus on it, but rather on my day to day with Miss Leah. But this one got to me.

Anna was only four. 

I can't even imagine not having had the last year and a half of cuddles and giggles and struggles and smiles and tantrums and triumphs with Leah. And I don't want to have to imagine it in the future. 

It's been a trying year for us with the addition of seizures to Leah's bag of tricks. Watching one more thing take control of my daughter's body and then watching medication try to mask those symptoms leaving her with a handful of other side effects has not been the easiest drink to swallow. And yet most of the time, she barrels right through her day with a smile on her face and a gleam in her eyes. Her courage and confidence never cease to amaze me. She's got it figured out much more than I do. She sees the eternal perspective, I think, while I get stuck in the here and now. 

Speaking about Anna, my friend Bridget said it so well,
"Little Anna is free. There is no Rett Syndrome in heaven. I imagine her with all of her sisters dancing on strong legs without braces and singing with the most beautiful voice imaginable. She is home, she is filled with joy and there is no pain left in her body..."
So as I stared at the screen of my phone and Facebook asked me, "What's on your mind?," I couldn't help but think of Anna and her family and Leah and our larger Rett family. Leah will one day be free. But my hope is that she will be free while she's here. It made me think of Amy, who is running for Leah in just two short months. It made me think of all the doctors, organizations, researchers and volunteers who devote time and energy to bringing that freedom closer and closer every day. And, with tears swelling up in my eyes for sweet little Anna's family, I heard my little Leah stir, waking for the day. 

And it made me smile.

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