The Idea

by Suzy
First, I had an idea. And then, I was afraid.

The idea was this: to train and run a 1/2 marathon (13.1 miles) to raise awareness and funds for research into juvenile dermatomyositis, a terrible autoimmune disease that affects 3 children out of a million. A disease that affects my daughter.

Here's the backstory. Mielle was diagnosed nearly a year prior... so it had been months of doctor appointments, blood draws, and incredibly intense medications - steroids, chemotherapy, and others - with incredibly intense side effects - weight gain, moodiness and rage. At first she got better, but several months in she relapsed. She was getting worse again. We were panicked. We lost faith in her doctor. We found a new one, and Mielle started intravenous steroid treatments and weekly injections. She kicked and screamed herself hoarse with every poke of the needle.

Finally, finally, things began to turn around. Mielle improved. The new regime of meds was working. We were able to pull back on her steroid dose, ever so slowly, and the side effects began to decrease, ever so slowly. Things were going in a good direction.

And then I got an email from Shari Hume, co-founder of Cure JM, a parent and grandparent-led organization that funds research into this disease, and provides critical information and support to families like ours. In Shari's email, she asked me to consider participating in a run.

Cure JM is an invaluable resource for us in SO many ways. I already knew that the Carlsbad marathon was their major fundraising event. And in the past, I thought about running, and dismissed the idea... Yeah, I'll raise money, but I won't run. I CAN'T run. I mean, I have bad knees... I'm sure I do. (Not that I'd ever actually tried to run, mind you.) I really never gave it more thought than that. I'm no athlete. I'm not a runner; I don't run.

But somehow, on that particular day, for whatever reason, a little glimmer of a possibility flickered. Maybe I could run. Maybe I SHOULD run. Dealing with this disease had taken a huge emotional toll. Maybe running would help me cope. Maybe running would make me feel like something positive could come out of this ordeal, that one can be strong in the face of adversity. Maybe, by running, I could show Mielle that she is loved and supported beyond measure; that anything is possible; that SHE can do anything, in spite of this disease. Maybe...