Most times when I’m in a room with Olivia and Hana I can feel the Ehlers-Danlos in their body. It’s like an energy. It is my enemy. I am watching Ehlers-Danlos. I have watched it take Olivia from a Division I tennis player to a wheelchair. I have watched Olivia’s joints dislocate and her teeth fall out. Now, I watch Ehlers-Danlos attack Hana’s joints and her autonomic nervous system. I have never had an enemy like this. Because my enemy seems indestructible, I am studying it, looking for a chink in it’s armor. This is incredibly hard to do because what you’re learning about the disease applies to two people you love more than anything. I don’t feel like I’m surviving. I feel like I am suspended in mid-air where the air is thin and I seem to always be gasping. I feel fierce and frightened at the same time.
Every person living like this is so, so much alike. I know them because I know me. We are from a place unimaginable. As an older first-time mom, I worried about the possibility of having an unhealthy child. I imagined all kinds of horrific scenarios, but I never imagined living rare.
As worried as I was, I did not imagine my children having a disease I could not pronounce and which most doctors never heard of. I did not imagine there would be no treatment for this disease. I did not image that 16 years later there would be another diagnosis for both my children of Ehlers-Danlos Syndrome. This disease also has no treatment. I never imagined.
No one should have to imagine this, let alone live it