Now and Then

This past weekend we had the pleasure of journeying up to Oakland for the natural history study that Claire participates in twice a year. It is a fun time, we get to see people that we don’t see often but love very much. We have a few friends that are very close in age to Claire and it is always interesting to see what their path has looked like and what rett has thrown their way. When you are dealing with hard stuff it is always easier to deal when there are other people who get it and in similar circumstances. Soon after we arrived on Saturday, Fairy Mary (also known as the unbelievable Dr. Jones) told us that there was a family that we had to meet. I really didn’t think anything of it, until we met. Her name is Lucy, she just turned three and is the closest thing to Claire that I have ever seen in my life, she was wonderful. It feels like my life goes by very slowly, so I don’t often see the change, but Saturday afternoon it smacked me in the face. I didn’t realize that Claire had grown up until I saw this sweet little girl who had just turned three. She still had a stroller just like Claire did at that age, she also had the same willpower to stay awake and see it all much like I remember Claire doing. I looked back through pictures to try to remember more of that time, it was a really great time. Recently as I have been more actively working through grief and the basketful of stuff in my head and heart related to all things Claire, I have associated that period with being numb. While that does still hold true, after seeing Lucy I have a little fresh perspective, my new word to attach to that period is tender. Like a really bad bruise from a recent injury, it was sore, but it didn’t paint the whole world yet. It got me thinking about the two and a half years that have transpired since Claire turned 3. In that period she went crazy for all things princess and is now over it. She has developed a deep love for learning while at the same time attaining new levels of silliness and play. The road has been rough and long, there haven’t been many water stops and I am very tired. Looking back, it hasn’t been all bad, with the hard and the ugly there has been so much good. It was really fun to get a little window into our past in the form of another sweet soul a little further back on the road. I am finding myself refreshed and renewed, in two and half years we are no worse off, we are still just enjoying the days that we have together and I just don’t think it can get better than that, cure for rett aside 🙂

The first picture was taken of Claire just before she turned three and the second was taken at the study on Saturday by Megan, a fellow rett mom and truly amazing woman.

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