I Drink a Lot of Coffee

There are reasons that I drink gallons of coffee. The last couple of days have been frickin’ exhausting. Wednesday was a doctor day for Caitlin. As most of you know, we live out in the cornfields of DeKalb. Since Caitlin has many rare medical problems and we want to get her the best care, all of her doctors are at Children’s Memorial Hospital in Chicago. This means that her regular appointments with her five doctors are all-day undertakings.

We left the house at 8 a.m. and ventured through traffic and construction to the Lincoln Park neighborhood. Traffic was reasonable so we were there exactly in time for our 10:15 a.m. appointment. Mapquest says that this is 1 hour and 15 minutes trip. Mapquest lies.


By the time we got there, my eyeballs were floating from all of the coffee. It wasn’t pleasant. We were in theory seeing Caitlin’s Rehabilitative Specialist and Orthopedist. We checked in and discovered that someone had messed up her scheduling and put one of the appointments on next Tuesday. Luckily, this was fixed immediately. Caitlin then got her hip x-rays. That was fine, and we started waiting. It was at that point that Caitlin started to cry from something. After about 15 minutes I soothed her. By 11:30 we were finally called in for the first doctor.

The appointment went well. The Rehabilitative Specialist was impressed by Caitlin’s physical gains with sitting and standing. There was also this exchange:

DOCTOR: Caitlin, can you use your words and talk to me?
CAITLIN: No.
DOCTOR LAUGHS
DOCTOR: I see that your daughter has discovered irony.

That’s my girl.

That appointment was over at about 12:05. Then we waited. And we waited. My hopes of getting out of there by a reasonable time quickly evaporated. By 1:30, I was flagging down nurses to find the doctor. I also had to start Caitlin’s tube feeding since she was supposed to start at noon. By 2 p.m., he sent a resident in to ask some questions for no particular reason. By 2:15, he swept into the exam room, apologized, poked Caitlin, told me that her scoliosis and hips were about the same, and swept out again three minutes later.

By three I finally ate lunch in a Burger King parking lot, and then we were back on the road. We got home, ate dinner, and then the whole family went to the public library’s SF reading club so that we could deconstruct I Am Legend.

The next day was about as hectic. I woke up, did some writing, got Caitlin to school, handled some business with the school district, talked to Lars about the MNP project, did some emailing for the City of DeKalb Disabilities Commission, picked up Caitlin, and then headed off to chair a LINC meeting.

The meeting went fine. We finally came to a decision about how to spend some funds left to us after a tragic accident. A teen mother and her child with disabilities died in a car accident a couple of years ago. Our organization received the memorial fund. We are working with a continuing education program for teen parents that is going to use our funds to buy some teen parent advocacy supplies.

We also continued to work with Easter Seals to try and get a satellite office placed in our community. Currently, people have to drive 45 minutes to get center-based pediatric therapies at Easter Seals. There used to be a center here, but it closed a couple of years ago due to staffing problems. I have been agitating for a while to get them to reopen as our community has a great need. We are finally making some progress. After the LINC meeting, I was asked to serve on the exploratory committee by the Easter Seals representative. Being me, I was unable to say no.

I also agreed to rewrite the LINC bylaws this month because I have sucker written on my face. Caitlin and I then got home and worked with her Physical Therapist.

Today is just watching Caitlin, some speech therapy, and packing for Windycon.

Did I mention that I drink a lot of coffee?