Having a hard time.
I don't know if it is the June gloom or if being in the hospital has messed with my mood, but I'm in a funk. And it's a low one. The reality of SMA is weighing heavily on my chest like a load of bricks and I'm having trouble catching my breath.
For such a long time we've been plodding along. Every day that Gwendolyn is healthy helps me move forward… put one foot in front of the other. There was a time when I wouldn't leave her side. I was afraid to be away from her for even a minute. I was afraid to take her outside. I was afraid to have her around other people. I was afraid and that fear paralyzed me. I think I've come a long way since then — we, as a family, have. I know Gwendolyn and her joy for life is the reason. And somewhere along the way I let go of fear… and Gwendolyn helped me with that, too.
But, that doesn't change the reality. SMA is terminal. And while I don't allow that to define Gwendolyn, it is impossible for it not to creep in. It makes living a “normal” life difficult. It makes every milestone enormous. It makes every good thing more tangibly pivotal. It makes every illness petrifying. I know that life is precious for everyone and can be cut short at a moment's notice. But the difference is I know that life will be short for my child. And sometimes that can be overwhelming.
It has been a brutal year for SMA. Far, far too many children have lost their lives to this disease and this year seems to have been especially unrelenting. Some children we know and many we don't, but there is a regular reminder that SMA is terminal.
Last week our friends the Liston's lost their nearly four-year-old daughter, Brynlee. We've known Brynlee since Gwendolyn's diagnosis. She was a firecracker — spunky, smiley, beautiful, and strong — much stronger physically than Gwendolyn. She was healthy — in fact, just days before she passed away she got to have her first sleep over party with her cousin at her aunt's house. And then suddenly on a regular day, with no signs of illness, she went into cardiac arrest. I didn't even think about this being a possibility for a child so small. But this is SMA.
In April, our friends, Kate and Mike Van De Loo, lost their baby, Ciara, to SMA. She wasn't even one yet. The Van De Loo family are just like any family. Ciara was their second child. They had a regular pregnancy. She seemed perfectly healthy when she was born and then boom — SMA. Ciara seemed so strong. They took such good care of her. They had great doctors. But sometimes that isn't enough. This is SMA.
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Just a few weeks later, SMA claimed the life of Sydney Potjer. Sydney was one of the children we gifted an iPad to last year. I think my favorite part of the bio her mom submitted about Sydney for the giveaway was, “Her favorite words are I don't need help or I can help you, let me try.” She was six-years-old. This is SMA.
These are just three of the amazing children this disease has claimed recently. There are sadly many more. And they are smart and funny and strong and brave and someone's entire world. Loss is such a defining part of the SMA community that children are referred to as warriors while living and angels once they have passed. And while I still have the gift of defining Gwendolyn as a warrior, it pains me every single time I write it. No three-year-old should be defined as a warrior. They should be laughing and twirling and singing at the top of their lungs and throwing temper tantrums and completely naive to what warrior means. I want to be able to say, “This is my daughter Gwendolyn and she is an SMA survivor.” No, I want Gwendolyn to be able to say that. And not with an ellipsis inferring “for now.”