In It Together

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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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Be

In my inner world, I fight dragons. I take on armies and villains, triumphing over any challenge with wit and courage. Did I mention this was a fantasy?

In the real world, I've wrapped myself in the notion that my dreams are the result of an active imagination. Lately, though, as I look at my life and the things I haven't achieved or the real demons I've been afraid to fight, I've come to an uncomfortable admission. It's not just the inner triumphs that are fictional. Everything in that world is imaginary – especially the courage.

Before thirteen-year-old Thing1 was born, I never thought of myself as especially kind or patient or even steadfast. When he came into our world, however, right away he needed me to learn all of those things and, for him, I did. My kindness or patience still wouldn't win me any awards, but because of him I learned to keep trying when the breast milk wasn't flowing right away. I learned to stick by someone who was screaming in my face and to put someone else's needs before my own.

Right now we're navigating the first year of adolescence with all the pitfalls I'd expect and some I didn't. And even though he's getting stubble on his chin, I still look at him and feel the same powerful push to be better. He needs me to be brave now. So, not just for him but because of him, I will be.

 

I Know Thee

It was just beginning to snow by the time I browbeat thirteen-year-old Thing1 into a clean T-shirt and into the car last Thursday. We were headed to Hubbard Hall for a pay-what-you-will dress rehearsal of 'King Lear', and, for the first time all year, Thing1 had decided he really wanted to do homework.

“Who are you and what have you done with my son?” I asked as we got into the car. He rolled his eyes at me. Any other night, such devotion to homework would have prompted me to call a mental health professional, but we had to get to dinner before the show, and I decided not to spike the ball.

Thirteen has made Thing1 unrecognizable somedays. A winter ago on the same road, anticipating another winter Shakespeare tragedy, this same young man regaled me with the intricacies of modifying his favorite computer game. Thursday night, he kept his own council.

I asked about his day at school and got mostly monosyllabic answers to my questions. Finally, I asked the right question.

“How are you liking The Crucible?” The two of us had seen that play a year earlier at another local theatre, and I hoped the experience was enhancing his classwork.

“I'm just bored with it,” he finally answered.

“With the play?” I asked. “Or the class in general?” I thought I knew his answer. Thing1 loves math and science and considers English classes state-sanctioned torture. But I didnt know him as well as I thought.

“I'm bored with school,” he said, and my head nearly exploded with the questions that were forming. For the next fifteen minutes and then the next hour at dinner and in the theatre as we waited for King Lear to disown a loving daughter and a loyal servant only to realize he didn't understand their motives all that well, I uncovered a wealth of curiosity and dreams that my son had been quietly nurturing these last few months.

Instead of a knave bent on defying his parents' entreaties to take homework seriously, I was seeing a boy hungry for inspiration at school but determined to find it on his own if necessary. I was seeing a spark and, with it, the boy I thought I knew.

 

When in Vermont

Ski jump

Last Sunday we took a much-needed family stay-cation to Brattleboro for a ski jump competition. We chose the destination because it’s been a stopping point for many Olympians, and, in the forties, for the Big Guy’s dad.

The temperature was brisk, and the sun was out. Food vendors and tailgaiters created delicious grilled odors that bouyed the four of us on our climb up the 150+ snowy steps that lined the jump hill.

Twenty feet of snow-covered hillside and path separated the top of the stairs from the wall that bordered the jump area. We staked out a spot just below the jump-off just as the first round of jumpers whooshed past us.

Seven-year-old Thing2 watched a few jumpers and then, his awe subsiding, focused on the consistency of the snow and it’s suitability for sliding and ammunition.

The first round ended, and he began begging for permission to slide down the massive hill next to the steps. Noting the abundant opportunities the hill afforded for an impromptu ambulance ride, I naturally said, ‘No’. Thing2 pouted, but kept his silence.

The loudspeaker announced a break in the action, and we decided to move to a lower part of the hill for a different view of the action. The Big Guy and I began navigating down the hill towards the stairs. Half-way down, I turned around to offer a hand to Thing2. Still standing at the wall, he grinned at me.

“Mom, I want to slide down here!”

I hesitated for a minute and scanned his intended course for any objet d’injury.  Noting the incline leveled enough near the bottom for him to stop himself, gave my permission. Thing2 sat on his snowpant-covered butt and slid.

“You are a true Vermonter,” I told him as he coasted to a stop at my feet.  He is.

Despite the Big Guy’s deep roots in Vermont (from his father back to a time before “Vermont” existed) and Thing1’s maple syrup-steeped childhood, Thing2 is the only “real” Vermonter among us (I’m a recovering nomad). Local tradition confers the label only on those born in-state. The smile on his face as he sat in the snow, however, proved his status better than any birth certificate.

The path had been packed down, and Thing2 decided it was another slower sliding opportunity. I inched along behind him, keenly aware of the aging tread on my boot.  

Finally, the eternal adventurer in me decided that since we were in Vermont, I should do as my native-Vermonter had just done. The slippery path was much more easily negotiated on my butt. The path from nomad to settled Vermonter is one Thing2 will be showing me how to navigate for some time.