And I feel so lost… I feel like I’ve lost a part of my identity. I try and write down every memory I have, but even now I know there are so many I’m forgetting. I want to capture them before I forget, because they’re all I have.
About a year ago I started following a story online. Elena Desserich was a six year old little girl that was diagnosed with an inoperable brain tumor in November of 2006, called a Diffused Intrinsic Pontine Glioma. (DIPG). It’s attacks the brainstem, and makes it impossible to operate on. There’s no cure, life expectancy after being diagnosed with this is between 1-2 years, and the survival rate is less than 10%. Her parents started a website after she was diagnosed. I read it every day. Some were funny, some left me in tears. My heart broke for this family I had never met. This little girl who for some reason really touched my heart. I wanted her to be the exception, I wanted her to beat that disease. But in the back of my mind, I was waiting for the inevitable post. And on August 11, 2007, 9 months after she was diagnosed, I read it. Elena had passed away. I cried and cried that day, but I didn’t fully comprehend the depths of their sorrow. They continued to write after she died, and as I read their writings in the days and weeks after, and I thought I understood. I didn’t. Now I do. It’s not the same kind of sorrow, or the same kind of loss. But it’s still sorrow.
Elena has a 5 year old sister named Gracie. A couple weeks ago, they wrote something about how she was having trouble remembering her sister. And I wonder which is worse. To lose a sister at such a young age and grow up missing what could have been…. or losing a sister and the lifetime of memories along with her? I don’t know the answer to that. Sometimes I think about this little girl and wonder if 10 years from now when she’s 15 if she will still feel the crushing loss, or will it have subsided into a memory brought to life only by pictures? Will it still be as painful for me 10 years from now when I’m 35 and have gone on with my life- without Emily?
I find myself thinking that Gracie may have gotten a worse deal than me. How much can you remember before the age of 5? I have 20 years of vivid memories, pictures, and funny stories. I won’t have to remember Emily through someone else’s stories and memories of her. But Gracie will. Maybe her sorrow will be easier to deal with as the years go by, but where I have memories of a sister, I fear Gracie will have shadows. Shadows of what could have been, and constant reminders of what she’s missing out on.
I don’t think I want to trade my sorrow for shadows….
After Emily died, and we decided to have memorial contributions sent to St. Jude’s Children’s research hospital, a few people asked “Why St. Jude’s?” Almost as if to day, “she didn’t have cancer, why didn’t you choose American Diabetes Association or something to do with diabetes?” I often replied because it was a charity that Emily believed in. Her sorority does fundraisers for St. Jude. But the truth is... for me it was because of Elena. And Kate. And JJ. And Madeline. And Maria. And Sophie. And McKenna. All these kids had DIPG. And… they all had brothers or sisters they left behind. Siblings who are far too young to be grappling with a loss of this magnitude. Kids that are far too young to be left with shadows instead of the brothers and sisters that they loved. Those kids and their brothers and sisters are why St. Jude’s. Maybe a donation made in memory of my sister can keep someone else from having to grow up with shadows instead of a sibling- and that’s why St. Jude’s. I think Emily would agree.
These are just some of the kids whose stories I've read. There are so many more. I'd never heard of this disease before. Read their stories. Then I think you'll see why St. Jude's.
Elena
Kate
Maria
Sophie
JJ
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