Heart

I can't sleep. It's 1 am on a Sunday night. I didn't sleep enough last night. I should REALLY be asleep right now. But I can't sleep.

2018 hasn't been my favorite year. August hasn't been my favorite month in several years. As someone who generally searches for the good in things, this type of negative feeling weighs heavy. But it's there, and denying that it's there wouldn't make it any less true.

A couple of weeks ago, while B was away at camp, E had a break down. She missed him so much, and she was very emotional about it. And then in the midst of that, she shared that she just doesn't want to be bald anymore. She wants her hair back. Of course she does. And as her Mom, boy did that tear me up inside. As I've said from the jump, Alopecia is far from the worst thing she could have going on. But that doesn't mean it's not hard as hell for all of us. Knowing that my little girl is struggling, and that there's nothing I can do about it is hard.

This past week, she had a virus that's been going around. And I'm not sure whether it was directly related to the virus or what, but now she's missing some eyelashes on her left eye. Because losing the hair on her head wasn't enough. Now her beautiful, long eyelashes that frame her gorgeous grey/hazel eyes. Pardon the expletive, but come the fuck on, universe. Cut the kid a damn break.

I work really hard on remaining positive with her about her condition. So far, she hasn't noticed the eyelashes, and I'm working to make it not a big deal as well/much/long as I can. But sometimes, I need to vent about this stuff, because it's hard and it's scary and we all know that this space is how I process hard and scary things.

This girl is a special light in this world, and I want to preserve that in any way that I can. If I can. I feel kind of powerless just now.

But then, as all this is going on, she has been invited to take part in a photo shoot for a fundraising calendar on behalf of Alopecia Awareness. She gets to wear a beautiful dress and makeup and accessories and be photographed. This is so up her alley. It came along just exactly at the right time, I think.

When we first started dealing with this, the thought that she could potentially be a voice for this condition, an inspiration to others, was what kept me going. I faltered a bit because she's had a rough patch. But I do think that potential is still there. She has an uncanny ability to inspire smiles and kindness in people. I have to believe that means something. I have to believe that, this cloud too, will have a silver lining. I know that it will. It's just harder to hold onto that belief sometimes than it is others, you know?

She's my baby. Like ee cummings phrased it, she carries my heart. She carries it in her heart.