I hate waking up, but I love morning. My husband's eyes pop open at 3:30 am and he's ready for the day. My alarm goes off at 5 am and I grumble, but once I'm up, I'm ready to go. On the weekends, I'd like to "sleep in" until 6 am, but John and the dog always have other plans. I complain loudly, but when we take off for an early Saturday morning flight as the sun rises, I know that he's been right all along.
I arrive at school every day by 6:30 am; 6:15 if I can manage it. There are a handful of us there early every morning. It's quiet, there's no line at the copy machine, and I have almost an hour before the halls are really busy. I can get a lot done. I love that peaceful time to really get my thoughts into the day ahead. When those 21 faces greet me at 7:45, I'm ready to go.
Now, it's early morning in the hospital. I'm learning new early morning routines. Alex has been awakened several times to have his blood drawn, get weighed, take meds, go to the bathroom. He fell back asleep surprisingly fast each time.
I quietly washed up and dressed in the dim light while he slept. I asked the nurses to watch him while I went to the cafeteria for a quick breakfast (15 minutes, including the elevator ride, there and back; I've learned how to inhale food from years of parenting Alex) while he slept, nervous the whole time because these new people don't yet understand what it means to watch someone like Alex.
He lulls you into a false sense of security and when you let your guard down, things happen. Two weeks ago, after his surgery to remove a cancerous lymph node, he deftly removed the drain from the side of his neck. Then he immediately had to go to the bathroom. My husband and I were scrambling for the nurse call button, trying to unplug the IV pump, and get him to the bathroom "in time." Last night, he removed the needle that was supposed to be left inserted into his brand new chemo port in between treatments. It was bandaged up, but it still bugged him. Despite having me at his bedside, and being on video monitoring, he managed to pull the bandage off without removing his shirt. I pressed the call button, but the deed was way-done by the time she arrived. This morning, he removed the DermaBond that was over his incision for installing the port. I thought he was asleep and was sitting right next to him. He surreptitiously peeled it off, under his shirt, without me even knowing. *Sigh.*
We've learned a lot in the past nine months, but there's more to learn. There will be many more quiet mornings in the hospital. Three rounds of inpatient chemotherapy, followed by a stem cell transplant. It will be an opportunity for both learning and teaching, I think. I have more to learn about Alex's illness and treatment. And I have more to teach to help the nursing staff take care of Alex. I tell them he needs to be watched closely, and they say they understand, but then they walk away. When I call them back they say, "Boy, is he fast."
Autism and Cancer make things much more interesting. Being a nonverbal adult in a hospital setting has challenges as well. Being a nonverbal adult who is physically independent, and strong, and determined, and who understands what you say to and about him, is something most of the professionals don't seem quite ready for. If Alex wanted to, he could just get up, get in the elevator, and leave.
Caring for Alex requires "constant vigilance!" as Alastor Moody from Harry Potter would say. The next few months will be an interesting ride.