A fun long weekend-and a book

Well, since Eric headed over the mountains to spend time with his family this weekend, Caitlyn and I have been enjoying some mother-daughter time. Since Caitlyn's diagnosis, I have become active in the ARC. On Friday they had a Special Connections Carnival. There is nothing more exciting than being around other parents who "get it" while our children have fun. As you can see, Caitlyn had a blast with the bubbles. I kept moving her back to the bubbles so she wouldn't be so irritated that mommy wouldn't let her go in the bouncy house. She saw all the kids having such fun, and wanted to go in...But mommy knew she'd be terrified, so we stayed on solid ground. They had a petting zoo which consisted of some poodles dressed up in costumes, and a couple of quite large golden retrievers. Of course Caitlyn loved the doggies!!! Yesterday was a little big more low key. And then today I felt brave and took Caitlyn and her friend Jaymes to church. (what was I thinking?) They had fun, but Caitlyn was obviously tired. I decided it was time to go after she sunk her teeth into my arm fairly hard in front of everyone! Luckily we had made it through the service and I got my 30 minutes alone...Now both kids are napping for another 20 minutes or so and then I will drive Jaymes to his mom. I hope Caitlyn will put up with a little bit of shopping after that...

A few months ago I bought a book called "Writing to Heal the Soul: Transforming Grief and Loss Through Writing." It is written by Susan Zimmerman. She also had a book called "Grief Dancers: A Journey into the Depths of the Soul" (or called "Keeping Katherine.") "Keeping Katherine" was the first book I read having to do with Rett Syndrome, even before I ventured into the great big "Rett Bible." Some days I think I read it too soon, and then I think about how much I related to the feelings that Susan had. I was able to relate to the anger and the wanting to be away from it all. In "Writing to Heal the Soul," she says about "Grief Dancers/Keeping Katherine": "I had always sought the miracle of a cure for Katherine. I wanted her to wake up one morning and start walking and talking. I wanted to be one of the lucky ones who beat the odds. By the time the book was finished, a different type of miracle had occurred: I'd stopped hurting." She also says "How do I let people know that only through writing was I able to let go of my dreams for Katherine and love her as she is, and my life as it is?" Susan's daughter is older, born in the 70's. It wasn't until Katherine was 7 that they realized what it was that she had. As a mom of a young girl with Rett Syndrome, I feel very fortunate to be raising her in a time where there is a real possibility of a cure. Even though that is a real possibility, I still know that I need to let go of the dreams I have for Caitlyn. The dreams that every mom has for their daughters when they are born. So, I have decided that after over 2 years I am going to take the grief head on and deal with it. I will start making my way through "Writing to Heal the Soul," in hopes that I can begin to reach a sense of acceptance for everything that we have been dealt. It helps going through a grief acceptance book that is written by the mother of a daughter with Rett Syndrome. As I go through the book, I may share some of my writings, as I know from experience that it helps to know others are in the same place you are. I will for sure let everyone know what I think when I am done.

In case you are wondering, we still have no clue what is happening for Kindergarten. It is crunch time with only 2 weeks before school is out.