michaeldthomas

This entry has been bouncing around my brain since Saturday night. I felt about a dozen different emotions during the memorial. I missed Scott and was sad for his passing too soon, but I also felt a joyous warmth from the celebration of his amazing life.

The event itself was perfect. It encompassed all of the good memories I had about IMSA's open mic night of music, readings, and cheesy, derivative sketch comedy. Scott would have loved it.

I went into the memorial with a great deal of anxiety. I'm not very proud of the spazzy teen version of me. I made a lot of mistakes. IMSA was an intense experience. At the time, I didn't possess the maturity or mental stability to handle a residential school for the gifted-- thus my flaming out after a Junior year of DRAMA. These people saw me at my worst.

It seems that all of that crap doesn't matter. Caitlin and I had a wonderful time. I reconnected with friends and buried the hatchet with some people who I left on bad terms. I'm glad I went.

Scott had one last gift for us all; he made sure that our friendships would last forever.

Today had a rough start. Caitlin woke up with a small seizure. The good news was it ended by itself. I’m always happy when I don’t need to give me daughter rectal valium.

After that, it was a quiet day of virtue. I took some walks and brainstormed some ideas for the next novel. I also managed to get some writing done for Mad Norwegian Press.

The virtuous almost outweighed the slothful watching of so much baseball and football. I'm very happy with the Cubs/Dodgers match-up. And finally, the Bears held a team in the 4th Quarter.

The coming week will be extremely busy. Here ‘s the quick preview:

1- A meeting at Caitlin’s school.

2- Dinner with eeknight and chats_noir.

3- Dinner with visiting friends.

4- Two doctor’s appointments at Children’s Memorial Hospital.

5- Sending in a chapter of the novel to the WindyCon workshop.

6- Writing, writing, writing.

Just finished reading: Blood and Iron by Elizabeth Bear
Currently reading: Rules of Conflict by Kristine Smith

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.

It’s a mixed day. First, the good stuff.

Caitlin finally has her augmentative communication device at school. With some work, Caitlin should soon have some new avenues for communication. It’s pretty exciting. The specialist that the district hired is a friend from LINC, so it was a very pleasant training. Caitlin’s two speech therapists are meeting on Saturday to further discuss the programming. It’s been a long wait with some bumps in the road, but we’re finally here.

The conference planning seems to be under control. That’s a happy thing.

Torchwood Season 1 should be arriving any day now, giving rarelylynne and me hours of cheestasic entertainment.

Now, the bad. My grandmother has been moved out of ICU, but they’ve discovered an abdominal aortic aneurysm. The doctors also think that there are further problems. I’m getting all of this through the family telephone game, so the details are hazy.

My thoughts go out to Heath Ledger and his loved ones. I understand he was young and a star actor, but I wish the press would move on to something else other than baseless speculation about how he died. I know, how about they talk about the 5.4 million non-famous human beings who have died in the Democratic Republic of the Congo since 1998 due to conflict, malnutrition, and disease (http://www.cnn.com/2008/WORLD/africa/01/23/congo/index.html).

I’ve been handling some more sensitive stuff recently for Caitlin, and it’s been extremely stressful. Even when you are in the right, the system is set up to save money, not to necessarily help people. Luckily, I have the support of RAMP for this headache. As most of you remember from Caitlin’s fundraising Grand Marshall gig a few weeks ago, RAMP is an advocacy agency for people with disabilities. They have been a lifesaver. It seems that I have finally stood my ground, and Caitlin will get what she needs to thrive. I just wish that people didn’t actively work against families like mine when we have so many normal difficulties to conquer each day.

Otherwise, Caitlin has been doing well. She is weaned off of Topamax and is on only one anti-epileptic for the first time since she was 3 months old. Unfortunately, it’s the expensive Vigabatrin that is approved everywhere else the world except the US. Everything seems to be working, though, with the current Vigabtrin/Ketogenic Diet/no-nap combination. During the summer, Caitlin was up to two strong spasms a day that lasted up to seven minutes each with the occasional blockbuster that went over 10 minutes until Diastat was administered. As of today, Caitlin has been seizure free since October 26. We’ll take it.

This has made her much more aware and with it. Caitlin had an awesome day at school doing very well with her vision therapy and physical therapy. She really is starting to stand for longer periods of time with minimal assistance. We’re so proud of her.

Things seem to also be going well with her and her little boyfriend. He and his mother have been arriving at school at the same time as us. The last two mornings he has insisted on holding her hand as I wheel her into class. This makes for a happy Caitlin. There is nothing quite like five-year-old love.

Last night I had my City of DeKalb Advisory Commission on Disabilities meeting. It went very well. We have finally started the process of networking with the similar committees at Northern Illinois University. It was great to share information and plant the seeds for future projects. The town/gown divide is ridiculous. This way we will combine our resources and ideas to hopefully make the community as a whole better for all of the people with disabilities. The only downside is that I think that I increased my workload again. Just call me Ado Annie....