Thing1 and I spent most of the day at Dartmouth- Hitchcock looking out the window of his room toward the great foggy north known as New Hampshire. The mountains disappeared and re-emerged from the clouds that has to around us all day, and they set the perfect view for our mood.
Thing1’s Ulcerative Colitis required him to be admitted to the hospital for treatment of a severe acute episode last night. The disease has escalated, and when we leave tomorrow, it will be with the knowledge that we need to decide between several long-term treatment options, each of which carry serious risks.
My gentle giant hasn’t shed any tears or wallowed in self-pity since his diagnosis a year and a half ago, but I could tell that the relapse and the treatment options presented had deflated his morale quite a bit.
Pep talks and platitudes are wasted on Thing1, so I steered the conversation back to his favorite topic – cars – until he was ready to talk about options. I worked my online day job while nurses came in and out with more medications and fluids, and the gray foggy day seemed to flow through the plate glass window.
Late in the day, the sound of a snow plow in the parking lot 5 floors below pulled our attention back to our view.
“The mountains are too populated,” said T1, “but they are beautiful.”
When the mountains disappeared into the night, I was able to do my own research into T1’s options. Number crunching and phone calls to experts made us more optimistic, and a chance conversation with a nurse with the same disease helped T1 marshal his morale.
Tomorrow is supposed to be cold but sunny, and the view should get better as things become clearer.
We had stayed over night near Dartmouth-Hitchcock hospital for medical and weather-related reasons, and the roads to the highway were still icey enough to keep me from enjoying the views, so Thing1 and I talked about his auto-immune disorder and how he will handle these emergencies next year when he’s on his own and about his upcoming college decisions.
I was about to take a slower road but Thing1 gave an annoyed snort.
“Can’t we take 91? If we get back any later, I’ll miss work, and I already missed my midterm.”
I was a bit surprised that he would want to work when I knew he was feeling shaky but decided we’d have that argument when we got home. He was not about to let it go, however, and, after expressing an unwillingness to ruin a perfect attendance record at work for weather or illness, he talked me into letting him go.
I got on the next ramp for 91 South. I was not sure that he had the energy, but still I told him, “I could not be prouder of you if you had gotten into Harvard.”
“I didn’t apply to Harvard, Mom.”
The sardonic tone always gets my eyes to roll to the heavens which is how I was unexpectedly fully able to take in the winter fantasy that flanked us on both sides of the highway. After the last week of worry, it was almost as lovely a happy straw to grasp as the realization that my sick boy still had enough energy and sense of humor to be a smart ass (I don’t know where he gets it).
It’s been about two weeks since I made the decision to resurrect a creative routine. The decision was the result of a webinar hosted by a friend, but the fuel to keep it going beyond the first day or two came from an unwelcome source.
Saturday morning we rushed Thing1 to the emergency room because his chronic illness had generated an overnight weight loss of over 10 pounds. I knew he had not been feeling well for the last day or so, but most of his flareups have resolve themselves in a day or two.
This one is still playing out, as we continue with fluid replacement and hospital visits.
I’ve been trying to find a silver lining–acknowledging that the umpteen phone calls and emails and texts are signs that — unlike too many Americans — at least we have the resources to help him. Like any parent, however, my focus has been on the cloud over the lining.
I worry how long he will have access to the care he desperately needs. I worry for all the parents of children with chronic illness who don’t have adequate health coverage and wonder how they handle that impact on their child’s health or life.
And I paint. When I’m frustrated on T1’s behalf, I paint. When I get off the phone with the insurance company wondering if his treatment will be compromised by what they are willing to cover, I paint. The painted pages don’t express tears or shouting, they exist instead of those things.
Art has always been a therapy for me, channeling worry or depression into something productive. Inspiration is a dubious gift, however, and right now I am eagerly anticipating the moment that my new creative routine must be fueled by discipline instead.