by Lillian Csernica on May 15, 2013
Day 15: A Day in the Life
5:45 a.m. Drag myself out of bed so I can get Michael ready for school. This means a new bag of his liquid diet, a diaper change, getting him dressed, giving him the four medications he gets in the morning, and praying he doesn’t have a seizure, which he tends to do when he first wakes up.
6:30 a.m. John gets up, feeds cats, feeds himself.
7:00 a.m. Wait for the phone call that tells usaide will be late. (It’s even money that she will be.)
7:05 a.m. Pray that the aide gets here ahead of the bus/before we’re done putting Michael on board. If we miss the bus, Chris has to load Michael into our van and drive him and the aide to school, unload Michael, then drive home again. Chris works the swing shift. This is not a happy morning scenario.
7:30 a.m. John leaves for school.
8:00 a.m. until 2:00 p.m: Depending on the day of the week, I go back to bed, go to appointments, write, do laundry, clean house, continue the Battle of the Boxes with my unpacking, and sometimes have lunch with my mother or my sister. I’ve taken to watching Netflix of DVDs while the boys are at school so I’m not so tempted to stay up late getting my entertainment fix.
2:30 p.m Transportation claims they’ll drop John off at his bus stop. Just after we moved, it was total madness making sure John’s aides were at the right bus stop at the right time. Also, Michael’s R.N. du jour arrives.
2:40 to 3:20 p.m. Anywhere in this window Michael’s bus will arrive. Transportation brings him directly to our house. (We keep trying to get them to let John and Michael ride the same bus, but they won’t do it. Maybe next year, when the boys are at the same school again.) We get Michael unloaded, his aide reports to his nurse, and the nurse takes over.
A typical weekday afternoon is spent prodding John through his chores and his homework, keeping up with my e-mail, novel work, and this blog, and making the phone calls on the endless list of what Michael needs. This week his oxygen machine broke down. Fortunately, that got fixed the next day. The big item now is the wheelchair. I’m in the middle of playingwith all the people involved in figuring out the new design that will accommodate his orthopedic issues.
6:00 p.m. John brings all three cats in and feeds them. We have foxes, coyotes, raccoons, and dogs in the neighborhood at night.
6:30 p.m. John makes his own dinner. On Wednesdays, John bakes, usually chocolate chip cookies. We eat them while we watch a movie during “Family Night.”
We have a very structured schedule for John because that’s what he needs. We limit his Netflix/DVD/videogame time to an hour a day on school days. Michael’s medical regimen of medication and breathing treatments and range of motion therapy tends to fill up the evening. Michael is asleep by 9:30 p.m. and John is in bed by 10 p.m.
When I go to bed depends on how my novel work is going, when I’ve taken my insomnia medication, how high or low my anxiety level is, and whether or not I need to wait up for Chris to come home from work. As late as that may be, it’s the best time for us to talk about doctor appointments and school issues and other “needs to be decided” topics.