Lazy Days of Summer

Summer school starts today. After three weeks at home, Maggie is chomping at the bit to get back to school. She got sick the week before Memorial Day, and spent four days in the ICU. She recovered at home for a week or so, finally returning to fighting form maybe five days ago. By then, school was out for the summer. She and I went out together every day, but that is not the same as hanging with her friends and spending the entire day engaged in activities.


Mom, too, is ready for school again. I am exhausted. Maggie requires care every second and the care is physically exhausting. It is a lot of lifting, standing, and multi tasking. My recently repaired shoulder is killing me and I need a break.

 While awake, Maggie is really a two-person job - or she is for everyone but me. When I am on duty there is generally no second person to help (unless Steve is home), but when the nurses are here I am the second person. While the nurses take the lead I can do all the other stuff that Maggie requires, like order supplies, make my (almost daily) trip to the pharmacy, take her to appointments, schedule, juggle, and pay the nurses, and do all the paperwork so I can be reimbursed for that. We have nurses in the house 16 hours a day, including over night. The days Maggie is in school, I can get some of that ancillary work done and maybe find an hour or so for me. So, yeah, I am ready.

At 2:00PM on Friday afternoon, Maggie and I were at home and I heard a “pop” from her wheelchair. That is never a good noise. I looked over and she had sheared the bolts off her headrest. Maggie constantly moves and she extends through her spine pushing hard against the headrest. It is ironic, though, because despite all this power, her trunk and neck are very weak and she needs the full support of that headrest. Without it, she cannot use the chair.

Without the chair, she cannot leave the house. Without leaving the house, she cannot attend school. It had to be fixed. Steve can often cobble something together, but he was gone for the weekend. My “cobbling” skills involve duct tape and bungee cords, neither of which was going to work in this case.

I called the Wheelchairs of Berkeley, the place that fixes her chair. The office is in Berkeley, but there is a repair shop in the City too. You have to go through the office to schedule anything. They did not answer. I have the SF shop on my cell phone (there is lots of maintenance for Maggie’s chair.) Wonder of wonder, Chris answered. He knows us very well. I asked if he by any chance had any time immediately. He said he did but he would only be there until 4. The shop is downtown, I was alone with Maggie, and I could not transport her in the broken chair. The nurse was supposed to arrive at 2:30. If everything went absolutely perfectly, this could actually happen.

I took all of the stuff off Maggie’s chair – the talker bag, the suction machine, the ambu bag, the emergency trach etc. It was ready to roll if the nurse showed up on time. She did!! I took off like a shot. As I drove downtown weaving through Friday afternoon traffic, I felt elated. Things never fall into place like that for me. Chris had it fixed in an hour. Maggie and I went out several times over the weekend.

Last night I told her Maggie she was going to school today. She was delighted. So was I. We went through the prep in an exaggerated manner, programming her communication device and getting all the supplies. She is so happy to be returning.

I got up at 6 and hopped in the shower. Her bus comes at 7:30 and the out the door ritual takes a good hour. While I was in the shower, the phone rang waking Steve out of a dead sleep.

It was the school nurse, the one who cares for Maggie while at school. (She has a different nurse for this week; her regular nurse will be back next week). The person whose presence allows me the first break I have had in three weeks.

She is sick. And apparently, there is no replacement. (None that I’ve heard, yet) That means Maggie cannot go to school. Or, she can go if I go with her and act as her nurse; but of course, she cannot take the bus without the nurse, so I also have to act as bus driver.

I have to go pack my lunch.