I wanted to say hello to all of my new friends and readers post-WisCon. Since you decided to subject yourselves to my blathering, I should probably give you a fuller introduction of myself. Along with being a Doctor Who nonfiction writer, aspiring SF novelist, and husband to the hottest Rare Book Librarian in the world, I am the full-time caregiver to my medically complicated, special needs daughter.
Caitlin is an amazing five-year-old girl with a wicked sense of humor and a great deal of love for the world around her. Caitlin has an extremely rare congenital condition called Aicardi syndrome
. The syndrome is characterized by brain malformations (ACC), eye malformations (retinal lacunae), and severe epilepsy (infantile spasms). Caitlin has major physical delays and communication problems. She is also a silent aspirator who is unable to eat or drink by mouth (she has a feeding tube that goes directly into her stomach). Caitlin by the standards of the disorder has thrived. She can do some sitting and assisted standing, she can communicate with sign language and her device, and she is at age in cognitive abilities (she knows her colors, letters, numbers, and some written words).
I work with her and coordinate all of her life. This includes work with doctors, teachers, nutritionists, therapists, insurance companies, and medical suppliers. I am also a volunteer for many organizations that deal with people with chronic medical conditions and disabilities. That’s about the gist of what I do.
Caitlin had a good weekend away from us. My family worked as a team to watch her while we were at WisCon. She even got to go to the zoo. We really appreciate all that they do for us.
This is a bittersweet week for the family. Caitlin is almost done with the Early Childhood program at school. Her last day is Monday. She starts kindergarten in the fall. Next week is the big IEP meeting to determine her placement and services at school. It looks like it’s going to be a smooth meeting. Caitlin will be placed in a special program for most of the day, and included in the regular kindergarten class for the rest. As far as I know, she should still be getting all of her school therapies at the same levels. IEPs are always a little tense, so hopefully this one will be uneventful.
In sadder news, one of Caitlin’s playmates from summer school passed away. My heart breaks for the family. It’s a shared fear that we live with everyday. There was a nice article in the local newspaper
about how Caitlin’s new school dealt with his passing.