As I sit at the computer tonight I am torn in half with emotion. Claire was very upset this afternoon at a failed attempt at a wagon ride. Clearly she did not want to read the stories we picked, play the games we had, we just didn’t have the right answer. After a short time out she calmed enough for us to talk. I asked if she would want to use her talker (her computer that reads eyegaze, we are in trial) to give us some hints for something that might help. I set her in front of it and she went right to the art page. Earlier in the afternoon she had made a paper snowflake with Jessi while I was gone. She wanted more. To see her light up as she instructed Jessi on what she wanted done with the art project was amazing. She was very clear. She wanted red paper with triangles. Just as the world of communication seems to be getting a little easier we find out her spine is starting to curve, not the end of the world. But I really was hoping to not start any new battles for a little while, oh well, change of plans. She was so worn out from the art direction she threw herself into that she was exhausted. I kissed them both and left for Jessi to read one last story. I started my wind down routine, check email and facebook. There it was, another angel flew home last night. That makes two in two days. Lucy was 14, Elizabeth 8. Why must the Rett Syndrome be such a monster. Why did it have to take a healthy girl who wasn’t fighting. When will it take Claire? I love having her here so much, I pray that our day to say goodbye doesn’t come for a long, long time. It is such a painful reminder, life is so rich and so fragile. We must be very careful with it. Growing up I was never exposed to children with life threatening situations. It was nothing that I ever thought of because there just wasn’t much of it. Now I find myself surrounded by it. I know that it is with reason and purpose. I know God is with me. It is surreal, this crazy life that chose me.
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You are right, it has been a tough couple of days for us Rett Mommies hearing all the news about other angels “going home.” You know, I think that is why we cherrish every day, every moment with our girls. GIve your sweetie a great big Brooklyn hug today!