It was almost 8:40 last night as I drove down Grymes Hill with Meghan.  She hadn’t been home since we left for school at 7:20 that morning. She was facing a shower, dinner, homework, and a later than normal bedtime.  She had spent the afternoon registering for her after school drama program, and had spent the last two and a quarter hours in some combination of intense exercise- on land and in the water.  She was exhausted and it was evident in her face. But, not it her voice or her mannerisms.

“I know I’ve got you running all over the place Mom, and I know it’s a lot of hours.  But, I have to tell you that I LOVE it.”

I couldn’t help but smile in spite of myself. We all want for our children to do what they love. And here she was; registered for drama, swimming 4 days a week, pushing the herself at school, enjoying church youth group, and planning a fundraiser for February.

She feels rotten. A lot. But she pushes. And I have to believe that is how we have to live this syndrome – this life.  Maybe I’m a good influence after all.

She plays in pain. Constantly.

She is always recovering from or anticipating something. But instead of waiting for the storm to pass…

She’s clearly dancing in the rain.

We have our spats. We’re supposed to. But, we balance each other too.

We keep each other motivated. We keep each other grounded.  Her diagnosis still makes me physically ill.  But, it does not, can not, and will not define her. I’m convinced.
Do what you love I tell her. Do what makes you happy. And she does.

And I do too. Watching her for hours, on the bench, in the basement by the pool makes me happy. Watching her on stage makes me happy. Watching her persevere makes me proud.

We will do this- together. We are BEATINGCOWDENS.