As told by Kat

Rah Rah

// August 13th, 2009 // Batten, Kat, Rachel

John and I went to see the geneticist and had a good talk with him about Rachel, the diagnosis, etc. The DNA lab at Mass General offers the CLN3 test (for Juvenile Batten Disease) at the super low price of $75 but Children’s Hospital does not honor that price and it would have cost us upwards of a thousand dollars. Needless to say that I put a call into the DNA lab at MGH so John can go in directly and have it done at their lab.

When we got home from Boston, (across the street from our house is a big town field) the first night of football & cheerleading practice had begun. The sight of the cheerleaders who were doing their first night of practicing directly across the street from our front door was a bit upsetting to me. The cheerleaders are about the same age as Rachel. I’m not upset at the girls for practicing, I think it is great that they are and they have every right to be. I’m crying because that will never be Rachel. The what should be / could be really kills me. The only thing worse than the shoulda/coulda is the thought of her realizing what is happening to her. When the rest of her vision goes or when she loses the ability to walk I am sure she is going to be much more aware than she is now.

I can hardly bear the thought of that.