Wheel-A-Thomas

The RAMP Wheel-A-Thon went well. Caitlin was very pleased to be the center of attention. They even gave her an official “Grand Marshall” t-shirt. Unfortunately, it said “Catlin” on the back. Nobody noticed, of course, with her in her wheelchair.

It was a beautiful day for a Wheel-A-Thon. Our friends Sarah, David, Jennifer, Lily, Kristen, Mike, and Nora joined us. Everybody seemed to have a good time. We ended up racing all of the college kids towards the end of the route. They ate Caitlin’s dust.

We raised $1,110, the largest team amount. We can’t thank everybody enough for their hard work and generosity. This is an important local organization that aids many individuals with disabilities. We just wished that we could do more.

Here is the local newspaper article:
http://www.daily-chronicle.com/articles/2007/09/30/news/local/news04.txt

Cubs Win the N.L. Central!!!

Woo f*#%ing hoo!!!

The Cubs are back in the postseason, and the field is weak. Bring on the Mets/Phillies/Padres/Rockies/Diamondbacks!

It has been a strange year, but the team is starting to come together. Zambrano has his ace stuff again, and the big bats are finally hitting for power. Anything can happen once you’re in the playoffs.

Fanzine Article

I can now talk a bit more about my SF fanzine article.

I was asked to submit an article on Doctor Who continuity for Steven H Silver’s Argentus. Steven H Silver is an SF fan, bibliographer, publisher, convention runner, and editor. He has 7 nominations for the Best Fan Writer Hugo Award.

http://en.wikipedia.org/wiki/Steven_H_Silver

Argentus is a yearly fanzine that has previously published things from writers such as many of the folks from SF Site, Mike Resnick, S.M. Stirling, Gene Wolfe, and Larry Niven. I was gobsmacked to be asked, and I am honored to be included.

http://www.sfsite.com/~silverag/argentus.html

Everybody that I know will be getting a copy for Christmas. :)

Busy Friday

I am sitting here poking my daughter, Seizure McGulicuty, to keep her from falling back to sleep. I got very little writing done this morning. Caitlin woke up with a spasm at 6:15 AM. It was only for three minutes, but she’s now out of it. That pretty much, understandably, spoils my muse. I was able to flesh out the plotting of the next chapter in my novel, so that’s all good.

Lynne is only working this morning. She’s coming home this afternoon to help program the Dynavox with Caitlin’s Speech Therapist. It will be nice to have her home. It also gives me a chance to spend the afternoon at Panera doing revisions.

I’m currently reading through a new Mad Norwegian Press manuscript. It’s another hefty, quality book on Doctor Who that looks great.

Yesterday we had a nice evening out with our friends Sarah and David. Italian food and Borders are good for the soul. I finally got the new New Pornographers album. It is much gentler than the previous albums. I like it, but I really need to listen to it a few more times on the ole’ iPod to pick up its subtleties. Lynne picked up Dead Sexy by Tate Hallaway. She is becoming a giddy fangirl for this series. I’ve heard her recommend the first book, Tall, Dark & Dead, to a good dozen people.

Tomorrow is RAMP's Wheel-A-Thon. If any of our peeps are near DeKalb at 11 AM, please come out and walk/wheel with us. We are very proud of our little Grand Marshall, and it’s an important local organization. We certainly are very thankful for their educational advocacy. I can’t begin to tell you how important it is for there to be an organization that will help people with disabilities fight for their rights.

Fighting and Writing

A couple of things that sucked happened today. Both are sensitive, so I can’t properly vent.

First, DeKalb County did not receive the Access to Recreation Grant. 14 communities tried, but only 4 received the funds. We put a lot of hard work into the grant proposal, so this is very disappointing. Hopefully, we will do better next time. Our county really needs better parks and recreational facilities for people with disabilities.

The second thing has to do with some bureaucratic hiccups with something that Caitlin needs. I am taking steps to smooth it, but I am not looking forward to the fight. Of course, that doesn’t mean that I won’t win. You don’t want to mess with my daughter...

Otherwise, Caitlin is well. The seizures are still under control. I was also able to catch up on her paperwork and filing today.

I sent my fanzine article away. Hopefully, the editor will like what I did. I can’t wait to talk about this more, but I hate to jinx things.

I went back to the novel today. The plan is to write the novel at my fixed 6 AM time, and then use the time that Caitlin is at school to do edits. I also hope to have both of those short stories cleaned up in the next couple of weeks.

I am thinking about sending one of them to the L. Ron Hubbard Writers of the Future Contest. It seems many of the authors that I respect got their start with it. I am sure that people out there can guess why I have trepidations. Are there any thoughts about it from those in the know?

Currently reading: Archangel Protocol by Lyda Morehouse
Just Finished: WebMage by Kelly McCullough

Great Post in an Unexpected Place

I just found this great post on The Onion’s A.V. Club Blog. The author and I had very similar life journeys and opinions about fantasy literature.

http://www.avclub.com/content/blog/flight_from_fantasy_jordan_eddings

Wow

Wow. I am speechless.

http://community.livejournal.com/atlanta_furs/

A Normal, Average Week

It was a long if not particularly memorable week. Caitlin is doing well. After her terrible Tuesday, the rest of her week was fine. She was seizure free and able to get good work done at school and in therapy. We’re starting to really use her Dynavox, and she was also able to walk with assistance out into our yard this week.

We had a meeting with RAMP on Thursday in anticipation of the Wheel-a-thon next Saturday. I am very proud of our little Grand Marshall.

We are taking Caitlin to the movies for the first time today with her best friend, Lily. It is a showing of Ratatouille. All of the admissions are being donated to RAMP. It should be a lot of fun.

Everything else went well this week. Lynne was added to the editorial board of a journal. There are some other cool things going on in her career, but it’s too soon to talk about most of them. Suffice to say there is a lot of excitement around here. She is really doing some special stuff with her rare book department, and I am very proud of her.

I am in revision hell, mired in the process of editing an article, two short stories, and the first chunk of the novel. At least I have time before any of the deadlines hit.

Our registration is officially in for Windy Con and Fantasy Matters. Along with Geek.Kon and Chicago TARDIS, we have four cons before the end of the year. It should be fairly wild. So far, I’m only doing panels for Windy Con. Geek.Kon was a last minute thing, so it looks like we missed the window for panels. It might actually be refreshing to be back in the audience for a change.

We lost another Aicardi girl this week, and there’s another girl who’s probably going to pass in the next few days. Please keep them and their families in your thoughts and/or prayers.

Just finished reading: A Game of Thrones by George R.R. Martin
Currently Reading: WebMage by Kelly McCullough

Yarrr...It be a talk-like-a-pirate day entry...

This is a quick blog because I’m really just stalling before I start to do some real work. I am in the middle of writing a fanzine article about Doctor Who continuity. It’s a topic I enjoy, but it’s such a huge subject that I’m having trouble keeping it focused. I am already 2/3 of the way to my word limit, and I am probably going end up well beyond that number. I must remind myself that it is better to have too much than too little. I can always edit it down.

Caitlin is fine today. The meeting with her doctor went well. There was a new fellow from the Epilepsy Center and a visiting doctor from India who joined Caitlin’s doctor for the appointment. Caitlin’s doctor was still very proud of Cait’s progress and spent much of the time bragging to his colleagues. He strongly approved of our “no nap” solution to control her epilepsy, and we decided that it was time to wean the Topamax. We all felt that it wasn’t doing anything other than making her sleepy. With her off of that drug, it also frees us up to try something new if Caitlin’s seizures stay bad.

Lynne and I are now definitely going to Geek.Kon (http://geekkon.net/) in Madison. It sounds like a hoot. Lynne will be working, but there should be some time for play. It is a free con, but it has some neat guests. It is also Lynne’s birthday weekend, so it will be nice to have some couple time. My mom will be watching Caitlin, so everybody please cross your fingers that Caitlin’s seizures don’t go crazy while we’re gone.

Mixed Morning

Ugghh... Mixed morning.

On the plus side, the Cubs came back to win last night. I’m also really whipping through writing this new short story.

On the minus side, Caitlin woke up with a massive 13-minute seizure. She’s upstairs now sleeping after a massive dose of rectal valium. No school for her today.

On the plus side, we are seeing Caitlin’s Pediatric Epileptologist this afternoon. He probably doesn’t have any more miracles up his sleeve, but I can dream.

LiveJournal

This blog now has an identical twin on LiveJournal for those who prefer LiveJournal:
http://michaeldthomas.livejournal.com/

Why We Fight

I don’t think of myself as a hero. Some people call me that, but it always makes me a little uncomfortable (though flattered). In my mind, I’m just a father who loves his daughter. Caitlin is an amazing little girl, and I just want her to be the best Caitlin possible. That’s a parent’s job.

Today, Caitlin had a good day at school. She was able to start using her Dynavox 4 to communicate. She also was able to go to the playground at recess and laugh and play on the swings. This is only what she deserves. Neither was easy to obtain, especially the swing.

When Caitlin started at her elementary school two years ago, she was one of many special pre-schoolers going there. The playground was completely inaccessible. Even though it was built during the Americans with Disabilities Act (ADA), it was not remotely up to code. There was a dirt “ramp” leading from the blacktop to the playground and then 8-inch barrier that had to be hurdled to enter the playground itself. There was also no equipment for children with disabilities. I brought my concerns up at Caitlin’s first IEP meeting only to find out that there was nothing that the school could do to change the situation because the playground was actually owned by the park district.

This started my two-year trek to rectify the situation. I brought this up to her educational advocate, and she convinced me that I should talk to the City of DeKalb Advisory Commission on Disabilities (I am now a member). They agreed that it was a problem, and that put into motion numerous meetings with the park district. They came to our meetings, and we went to them. I also had meetings with the park district at the school. It took months of agitation before some promises were finally made. It then took months more of agitation before those promises were kept.

As of a couple of weeks ago, there is now a sidewalk connecting the school blacktop to the playground surface. There are also now two high-backed swings. My daughter is able to truly enjoy recess with her friends for the first time. More importantly, this will be there for all of the other current and future children with disabilities who just want to go and enjoy a playground with their friends and families.

This is why I keep fighting. It’s just the right thing to do, and my daughter’s laughter is all of the validation that I need.

New Profile Pic (Me in Paris)

Wicked Busy

This is one of those wicked busy weeks. Today Caitlin and I have to run around doing some business for the Aicardi Syndrome Family Conference. Tomorrow I have to do my Co-chair thing for a LINC meeting. Lynne and I are still wrestling with Caitlin’s Dynavox programming. There are a few dozen phone calls that need to be made, and I need to sort through some paperwork. I really need some helper robots. Our damn cats are simply not pulling their weight.

I finished with my first draft of a new short story. It was a bitch to write, but I’m pleased with the result. Now it’s Lynne’s turn to read it. Lynne is an excellent editor. Of course, she should be after all of those years of fancy schooling. This is a project I did on a whim for an anthology. After Lynne finishes it, I need to write a letter of query. I am a little nervous about that. I have no idea how I’m going to sell this story in a summary.

Time Wounds All Heels...

It’s, not surprisingly, a melancholy day today.

Yesterday was a mediocre one for Caitlin. Her seizures had been better, but that morning she woke up with a 7-minute seizure. It’s always a bad way to start the day. Yesterday was also the day for Caitlin to get fitted for her new Ankle Foot Orthotics (braces that help her stand and keep the bones and muscles in good shape). We go to a place in Aurora by Fox Valley Mall. It’s always a weird time. I spent some of my formative years in that area, so it’s strange to go back and see the changes. It’s also hard to believe that this will be Caitlin’s fourth pair. It seriously doesn’t feel like that much time has passed.

We really like the Orthotist there. He is a sweet man who is in a wheelchair. He is very gentle with Caitlin, and she adores him. It’s also nice to have somebody who sees her yearly. In some ways he can see her progress better than I can.

It was a hard moment for me when we left. A couple was entering as we were leaving. They were in their late 60s, and they were bringing in their daughter with severe disabilities who was probably a little bit older than me. There is always a knowing look between the parents of children with special needs. It’s an unspoken weariness and sadness. We all love our children, but this is a hard life. I can’t imagine still doing this when I am their age, but I know I will be. I love Caitlin too much to put her in an institution, and I don’t want to think about the other alternative that life could deal us.

Of course, everybody is aware of today’s anniversary. As a kid, I didn’t quite understand the whole “What we you doing when you found out that JFK was shot?” thing that Baby Boomers had. I certainly do now. My memory of 9/11/01 is still so clear in my head. I was at work at Bic when one of the other employees got the phone call from her husband about the first plane. I spent the next hour trying to get to a website that had the news. Only the USA Today site was working for us. I remember how the news kept escalating up until the Pentagon was hit. At that point I called Lynne to get her out of Yale, which suddenly felt like too viable a target. We were all let out of work early that day. Being business people in Milford, Connecticut, many of us had friends and loved ones in Manhattan.

Lynne and I spent the rest of the day watching TV in the same shock that everybody felt that day. We had a couple of friends over who didn’t have cable and spent our time flipping between CNN and BBC America. We didn’t lose anybody that day, but it hit us hard.

That was the night that we made the decision to have a child. It just felt like it was right to bring some life into the world after that. A few months later, Lynne was pregnant with Caitlin.

Madeleine L’Engle Passed Away

This is really sad news. Madeleine L’Engle was one of the first authors that really moved me as a child. She created for me a life-long love of SF. She is also one of Lynne’s favorite authors.

http://www.boingboing.net/2007/09/07/rip-author-madeleine.html

Lynne just made an excellent post about her passing:
http://rarelylynne.livejournal.com/

Destination Wonder

Last night we had our first meeting of Destination Wonder, the new DeKalb Public Library SF reading club. We had gone in not really knowing what to expect. Our friend Steve is running it, and I will admit that I was a little worried that Lynne and I would be the only ones there. I was way off the mark. The club was packed to almost standing room only. It was wonderful. I had no idea that there were so many SF fans in town who would be interested in a reading club.

This month’s book was The Curse of Chalion by Lois McMaster Bujold. We had a nice discussion with cookies. What else could I want? It was also heavily leaning towards women who outnumbered the men about 3 to 1. It was a very polite, intelligent discussion. The only difficulty was trying not to play up the fact that Lois is an acquaintance of ours. This club is definitely a great addition to our calendars. It will keep us reading things that we would otherwise not give a try. Here is the schedule for the rest of school year:

Oct. 5 at 7:00 p.m.
Fahrenheit 451
Ray Bradbury

Nov. 7 at 7:00 p.m.
I Am Legend
Richard Matheson

Dec. 5 at 7:00 p.m.
The Golden Compass
Philip Pullman

Jan. 2 at 7:00 p.m.
Small Gods
Terry Pratchett

Feb. 6 at 7:00 p.m.
Paragaea
Chris Roberson

Mar. 5 at 7:00 p.m.
Resume with Monsters
William Browning Spencer

Apr. 2 at 7:00 p.m.
Last Call
Tim Powers

May 7 at 7:00 p.m.
Hyperion
Dan Simmons

Leonard Nimoy singing - Ballad of Bilbo Baggins

This is something that every Tolkien fan should know by heart.

Working Like a Dog

It’s an odd feeling to have evolved from procrastinator to workaholic. I find that if I stop and think about my commitments for even a moment, my old self starts to freak out. I find that the best course of action is to just do as much as I can each day. What used to scare me into procrastination when I was younger was the ability to see the enormity of a commitment. Now I try to focus on just doing a little each day. I live by the old proverb about eating an elephant; I take one bite at a time.

Caitlin has been seizure free for a week. It is exhausting keeping her awake and stimulated all day, but it sure as hell beats the alternative. She’s settling back into her school routine. I miss her while she’s away, but it does give me more time to focus on my own projects. Today is Easter Seals and OT. I always enjoy watching her smile and laugh on the swing.

Speaking of my projects, I just agreed to write a short article about Doctor Who for a modestly prestigious SF fanzine. It really came out of left field, but I couldn’t be more pleased. This is a zine that has published articles from Hugo and Nebula award winning SF authors (the editor has also been Hugo nominated). It will be cool to be associated with it. The deadline is a little tight, but it’s a subject that I know very well.

On a related note, I will be doing at least one panel on Doctor Who at WindyCon this year. It should be a fun time. I certainly enjoyed my panels at Odyssey Con and CONvergence. Last year I was tagging along with Lynne in the shadows. This year I will be on panels and taking a writer’s workshop. Not to mention we will be having a couple of meals with prestigious SF authors for Lynne’s work. It’s nice to be living instead of dreaming.

I am finished with phase one of my Mad Norwegian Press work. It took ten months and hundreds of hours, but it is done. Lars and Christa just returned from DragonCon, so I am still awaiting my next set of orders.