Taken August 2007. I miss this. This girl is still in my daughter but the disease is taking over. I took Rachel to see a primary care doctor here in Denver and she is willing to treat Rachel both as a person and a person with a neurological disorder. This is a big weight off of my shoulders. As she is still having breakthrough bleeding despite the pill and extra estrogen I decided to try her on the depo shot and so far so good. She weighed 186 at the doctor and I am still getting her in and out of the bath with minimal help from her. As long as I can physically care for her I am keeping her endlessly chatty, yelling, hungry, sometimes irritable self at home (which is still an airstream – so cool).
I hate what this disease is doing. I absolutely hate it. Taking her abilities and making it hard to do things as a single-parent family. I won’t give up but unfortunately, Batten Disease doesn’t give up, either. My arms hurt from my muscles ripping to grow larger as her muscles give out more and more each week. Being built like a brick shit house has its advantages that I never dreamed of.