by Lillian Csernica on March 13, 2013
I am not a morning person. My higher brain functions do not come online until 10 a.m. at best. It’s a good thing my motor skills are operational before then because I have to get up every morning Monday through Friday at 5:45 a.m. Why, you ask? Why make myself suffer like this, especially when it involves no daylight and a staircase with a nasty bend in it? Simple. Michael’s bus arrives at 7 a.m. (more or less) and I have to get him ready by 6:30 so my husband can put Michael in his wheelchair, get him all fastened in, and be ready and waiting when the big yellow bus rolls up.
Getting Michael ready for school is a complicated process. It involves turning off the oxygen machine he uses while he sleeps. Then I get his food ready, which means a bag of liquid KetoCal hung up on the IV pole and primed in the food pump so Chris can put it all in the portable backpack. Then I prep Michael’s medications so they melt together by the time he’s dressed. Now comes the major effort: changing his diaper. Whenever I happen to hear new mothers complaining about the ordeals of diaper changing, I bite my tongue so I don’t make some acidic remark about how they’re looking at two or three years of it while I or Michael’s caregiver will be coping with this for the rest of Michael’s life. At sixteen Michael is taller than I am, long and lanky due to not having a third trimester and the build up of fat that occurs during it. This makes him a bit difficult to roll back and forth, especially now that he has steel Harrington rods flanking his spine to correct his scoliosis. Still, I must prevail, because Michael has to sit in his wheelchair for the hour ride to school and I want him to be as comfortable as possible.
Over the years I have learned to be able to get the Morning Checklist accomplished while a good percentage of my brain has yet to light up and get with the program. I suppose this is some kind of advantage, because there have been times when I’ve found myself in an emergency room at three a.m. reciting Michael’s medical history to the pediatrician on call. More than once I’ve been mistaken for a R.N. I’m not sure if it’s the way I dress or the fatigue in my voice or the way I can suddenly switch to doctor talk with all its strange abbreviations.
I love Michael. He’s a lot of work, and we’ve nearly lost him twice. When he was born, we were offered the option of turning off his life support. For us, that was not an option. We kept the faith, and Michael kept on fighting. Fortunately, he has inherited the iron constitution from my father’s side of the family. That also means Michael has my father’s stubborn streak, but I’m OK with that. It’s one of his survival mechanisms.