When people ask how Cee is doing, the easiest response is that she has good days and bad days. Really that’s been our go-to answer all along. But the definition of “good days” and “bad days” has changed a lot over the past month.
Before diagnosis: A typical good day was when Cee would be able to get off the couch to color at our kitchen table. Or maybe she would eat something at all three meals. Either of those were enough to be classified as a good day, even if the rest of the day was awful. Occasionally she would have a super-good day. One day in March she went outside and played in the snow. But then she was outside too long and spent the next week trying to recover.
One month after diagnosis: A good day is a day when Cee wakes up and gets out of bed without needing encouragement, plays with Elle, and walks up and down the stairs without complaining of pain. She eats relatively normal food, just a little less than usual. She smiles. She pretends to be a ballerina.
We still have our moments–yesterday she stayed in her pajamas all day–but life is so much better than it was. We don’t have near the tantrums we used to. Cee has started being able to go to the bathroom by herself, which is awesome. I’m enjoying the extra 30 minutes a day that I don’t have to spend pleading, bargaining, and threatening to get her in there.
One result of Cee illness is that she is very fearful of pain. She’s still hesitant to do lots of daily activities because she’s afraid it will hurt. She still resists changing clothes, for example. Hopefully we’ll keep making progress. In the mean time, we’re enjoying our new normal.