A Room with a View


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.

A Straw to Grasp

High Afternoon, 5×7, Watercolor

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).

Wednesday Storm

Wednesday Storm, Watercolor, 5×7

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.

Rejoice and Be Glad

It was a sunny six degrees by the time I got Thing2 to the school door, and, after a weekend of sub- sub-zero temps, the sky was so gloriously blue that I had to stop myself from blurted out how much it felt like spring. Knowing the mention of the five-letter S word would scare it off like showing a rodent its shadow in February, I silently ran my errands, making mental paintings of the trees and the shadows on the still-crisp snow.

Even a text from Thing1 reminding me he needed to practice driving stick (in mom’s car of course) couldn’t dim the feeling that it was as close to a perfect day as anyone could ask for. I’m not religious, but whenever Mother Nature is putting on a show like that, the greeting from Psalms that opened services at my parents’ old church runs through my head:

“This is the day that the Lord hath made. Let us rejoice and be glad in it.”

Whether you think a beautiful day was made or just happened, there’s something to be said for the missive to rejoice and be glad for it.

I admit to being a bit of a worrier. I worry about Thing1’s healthcare prospects as he’s starting to leave the nest. I worry about ever being able to retire. I worry about the growing number of displaced people around the world or if we’re moving closer to blowing up the human race with every single day.

I’ve been guilty of not rejoicing for days on end and even contemplating throwing away the rest of my personal collection of days.

My failure to rejoice in the moment — even for just a moment each day — is being rectified. Over the last few months I decided to make a change in my life and go back to school so that, in the long run, I would have more time to work on art and to feel like my life work will make a contribution. I’ve enjoyed school as an adult but as soon as I was immersed in study, I felt as if a fog was clearing.

The world started opening up, and I suddenly started to see the possibilities as well as the dangers. Despite a new mountain of work and all the same worries, I had more energy everyday. Without even realizing it, I was rejoicing.

Even if yesterday had been the last day, not rejoicing in the beauty of sun on the snow would not minimize any current troubles. Acknowledging the gift of that day, however is a recognition that there is always beauty, and worry cannot diminish it, even if it tries to obstruct it sometimes.

In It Together

DSC 0039

My sons are the center of my life.  They are the center of my husband’s life. 

Today, Congress began changing the future drastically for my eldest son by endangering his ability to obtain insurance when he is an adult. 

Today Congress rolled back Obamacare, and with it, protection for millions of people with pre-existing conditions (replaced with high risk pools).  My son is one of those people. He was diagnosed with an autoimmune disorder (a lifetime diagnosis) that requires medications that would be unattainable for us without insurance. 

He’ll be a man soon, and, again – through no fault of his own –  he may find it more difficult to get coverage or possibly even job, since he will have to evaluate the laws in each state and not every employer will want to cover hires in his situation. It will  Even so, he’s lucky compared to the millions of Americans who will lose insurance outright. He’s still on our insurance plan, and we’ll keep him there as long as the law allows.

Jimmy Kimmel hinted at some of this the other night in his emotional monologue. He briefly touched on the fact that, prior to the ACA, a child like his would have reached his lifetime insurance cap before he left the NICU. If that child had appendicitis, or a broken bone, or cancer, that cap would have left many parents bankrupt at best or burying their child at worst — even if they had insurance.  

I have thought a lot about those other parents in the months since our son was diagnosed. When we get our meds, I silently thank our company for making it possible and then shake my head that anyone in a country as rich as ours might have to watch their child suffer or even die.  I shake it when I wonder how many people die prematurely because they don’t have access to the same healthcare we do, and I wonder how we benefit as a society from treating children and poor people like disposable objects. 

I call my representatives. I donate. And I shake my head. But today I’m done shaking my head.  I’ve thought about moving our family back to a country with stronger healthcare, but I’d still be shaking my head at the drugstore, wondering how people back home were managing without access.  

So now I’m still calling my representatives and donating, but I’m also looking for new ways to show solidarity with my son and with all the other people who are being pushed out in the cold. Because, as Jimmy Kimmel so beautifully stated, “We need to take care of each other.”  

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