Tag: Chronic Illness

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.

Creative Blocks and Rocks

5 8Dweezil

Back in April, just about the time I was trying to untie my creativity from a paralysis of over-analysis and get the last few pages of The Truth about Trolls laid out, Thing2 was exploring his and putting my resolve not to limit it to the test. 

His spring time creative effort led to a rock pile in the middle of his room, the fruits of a “quarry” he and a couple friends had started near the kids’ Lord of the Flies training ground in the woods behind our house.

That was three weeks ago. The rock pile is still there.

He’s cleaned his room. I have cleaned his room-a bit. Laundry has been done. Baths have been had. But that rock pile is still there.

At first thing to wanted to hang onto it. Then he was afraid he wouldn’t clean it up the right way. 

It was a story writing itself (Élly has been very understanding, as long as her pages keep developing). 

Thing2, aware that the rock pile and the absurdities of our undeclared battle are serving as inspiration, is more determined than ever that it should stay. To his credit, however, he has moved it out of the center of the room so the rest of us can get from point a to point B without breaking or next.

I’ve decided to exercise my mom authority and remove the “inspiration” as soon as he goes to camp or I finish his story, whichever comes first.

 

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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Oranges and Oranges


Sixteen year old Thing1 got into fitness in a big way last summer. He started working out like crazy. He spent the summer cutting hay (with a scythe) at his girlfriend’s house and jumping in ponds and rivers.

Just about the same time, he began having digestive issues that caused him to lose over 20 pounds in a few weeks — no mean feat for a kid who can seriously endanger the profit margin of any restaurant daring enough to put out an all-you-can-eat buffet.

Thanks to my job, we have excellent insurance, but it still took multiple visits to the ER and the regular doctor, along with a healthy dose of nepotism to finally find us the right specialist to hand us a diagnosis of Ulcerative Colitis.

At the time, all I could do was feel eternally grateful for our health plan and angry at a system that would have left Thing1 at sixteen without a colon if we hadn’t known somebody who knows somebody who could make something happen. I was angry for a while at the seeming apathy of the people in the system and not just on behalf of Thing1, but on behalf of the millions of Americans who have bad insurance or none at all. It left me wondering how many kids miss their potential because of lack of access to adequate care.

I still think about that every time we go for a checkup, wondering what we can do — aside from regularly calling our elected representatives — to change things.

Thing1 has clearly been thinking about it too, taking the ‘change the things I can’ approach to a life that now suddenly includes up to 12 pills a day.

At first when I saw his reaction, I thought I was worrying about oranges and he was thinking about apples. While I made my daily calls to my reps, he began researching his autoimmune disorder and adjusting his diet long with his workout. He googled and read. He experimented with different portions of protein and fiber, fruit and starches as he learned what his system would tolerate (incidentally coming up with a unified digestive theory that involves eating whole crates of clementines while simultaneously helping your parents run up a grocery bill to rival the national debt).

At the same time, we’ve started the time-honoured college search. T1 is a math fanatic, so we started looking at math/science schools, but he surprised us by announcing he wanted to study nutrition to help other kids who might be dealing with similar digestive issues. We’ve since signed him up for a course at the community college, and he’s even considering a blog with fitness and nutrition tips.

I finally realized T1 and I really were both thinking about oranges and oranges. We were just thinking up different ways to get to the good stuff under the skin.

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