A Gray Hair and Old Enough

Hard to see in all that blond, but there's quite a few gray hairs!

Last year, two major milestones happened for Katelin; she got her first gray hair, and she has now lived 21 years longer than she was given when first diagnosed with Rett syndrome. These two kinda go hand in hand- she lived long enough to get her first gray hair.

Those first 12 years were one long day of waiting for death. I did all I could to treat her like each day was not her last, but that is not how we live as parents, especially if we're given an end date. I had other children to raise, to bring joy to, to play with, to celebrate and yet almost every night Katelin was the one who got the most kisses.

Firstly, I want to say how messed up the doctors were to just out right tell me she was going to die young. There was the initial testing- the doctor said, "If she has any of these, she'll die before she's five." Nope, couldn't wait until the results came in, he made me worry for weeks that I had, at best, three more years with her. Needless to say, it wasn't any of those things. Then it was another four years before gene testing became available and Rett syndrome became the definitive diagnosis.

The geneticist gave me the results and flat out said, "She'll be dead before she's 12." So, I waited. As the years went by, it became slightly easier to deal with the day to day without that in the forefront of my mind, but it robbed us all of normal days- when it was a good day, the kids didn't fight, Katelin might have laughed, maybe she didn't scream all day and STILL I wondered is this the last day??

When Katelin hit twelve years old, I finally let out the breath I was holding for 6 years. When she hit thirteen, I took a deep breath and told myself, "Those doctors didn't know what they were talking about, she's fine." But it never really stopped; any major appointment/procedure/new doctor- there'd be a one person, "you don't normally see a Rett girl this old, they usually die much younger." Only now when it's clear she beat the odds have those comments stopped. Which brings me to her gray hair.

When I noticed it and saw my family next, I mentioned it to my son-in-law. I told him that it made me feel old. He said, "be happy. She lived long enough to get one." And that is the truth, these things are all in how you look at them. I don't have the privilege of "feeling old" about it. I am, by default, grateful because SHE is old enough. That's the greatest privilege I didn't think I'd get for such a long, long time and it's denied to so many.

I think many of us have it always in the back of our minds-every day could be the last. When she sleeps in really late, I almost don't want to check on her. When she's laughing and playing before bed, I wish she'd not go to sleep just yet. Still, I know how fortunate I am as a parent of a Rett child/adult-she lived long enough to get a gray hair and that's a really big deal and I keep it close to my heart.