26 April 2013

life is in the details.

I cry every time I braid her hair, even if other people are around and a few tears sneak down my cheeks. It is a little victory in this very big mountain of our story. It is a daily thing to celebrate because my hands are strong. Cystinosis can cause muscle wasting and the hands are often the hardest hit. The buildup of the cystine crystals in the cell causes it to burst and die. When she was a baby, it was a (very real) fear of mine (no matter how silly) that my hands would be too weak to braid her hair by the time it was long enough. I'm the first to admit this is a small thing to be concerned about up against everything else in our lives, however it merits documentation and I want to cherish it now.

My dear friend reminded me that even when I come to that place where my hands can't do certain things, there will still be plenty to be excited about. (Thank you Jess.)

This week has found me dehydrated, weak, and dizzy because of the ever present stomach issues. Little Miss S made me laugh like a banshee when she oh so sweetly questioned, "Mommy, is your tummy making mad choices?" (I do my best to make a huge emphasis on the choices she makes, as opposed to simply telling her to be good. Because haven't we all made some less than stellar choices in our lives at some point or another? And we hope and pray our entire character isn't labeled as "good" or "bad" based on those choices.) Anyhow, yes...my stomach has been making some mad choices this week. However, I felt a huge sigh of relief when I received my lab results today and my creatine (kidney function) is measuring stable despite all of it! Huge blessing.

I mailed a letter today that is a tangible symbol of a brand of hope that triumphs everything else. On the drive back home, white blossoms flew from a tree, right down onto the street. They danced in the road like little spastic ballerinas. The world is warming up and pulling me to be more aware. We saw a red cat sauntering around on our walk today. Said cat carried him or herself as if he or she owned the whole town, in a way that only cats can.

Do you ever want to scoop up the details, in all of their humble glory, and bottle them up?


  1. ohh i love that picture~ I wish i had thick hair genes to pass on to my littles :)