On his good days, Thing1 can still Demonstrate that he’s still stronger and faster than we are,and, after a transfusion or infusion, that he still has endurance for some of his favorite activities.
We do try to get him out to hit a few holes or drive a bit. They have minimal impact on his health one where the other, but they keep them connected to his old way of life and, or importantly, what he is determined will be his way of life in the future once again.
We’re always wary of denial on all our parts, but determination is not that. after all, whether it’s getting up a hill at the public golf course in the town nearby, getting over this next hurdle, determination is the only thing that will keep him putting 1 foot in front of the other.
Denial isn’t a river in Egypt. It’s a pitcher of Kool-Aid, and as the heatwave wore on into its fifth day on Thursday, Thing1 and I were sporting faint purple mustaches, reality about to crash through the walls — again.
Heat advisories all week had included warnings for people with chronic illness. The advisories didn’t specify what care the chronically ill should take beyond staying out of the heat. Thing1 and I, however, still mentally had him in the ‘warning doesn’t apply here’ category, and, when Thing2 suggested going to the driving range, I got my keys.
It was 92 degrees by the time we put our money in the honor box in the barn that doubled as a pro shop and plant nursery. Thing2 and I were happy to make contact with the ball. For Thing1, every shot matters. He’ll hit one 200 yard ball for every three his eleven-year-old brother knocks into the ruff. Thursday Thing2 swung his way through half the basket before Thing1 had teed off four times.
“I need to sit down in the shade.” Thing1 grabbed his water and headed down the small hill to the car. He sat on the shady side, hand resting on the open door, sipping and breathing slowly.
“Do you want to go?” I asked, ready to put my foot down and force an exit. Thing1’s illness, however, has kept him indoors most of the summer. I wanted him to enjoy a normal day out.
He shook his head ‘no’, waited a few more minutes, and trudged back up the hill for a few more shots. We quickly realized practice was over for him, and he went back to the car for a minute while Thing2 hit the rest of the bucket. We headed home thinking Thing1 only needed a dip in the Green River and some rest to be better for work the next day.
Friday morning, Thing1 woke up with a fever and a phone call from the hospital telling us that his latest blood test showed his anemia — a side effect of the ongoing six month flare up — was worse. Neither of us was surprised. His lips had no color. His energy level, briefly improved in June, was almost non-existent again. He didn’t work Friday and stayed in bed all Saturday, determined to go to work today.
This morning he woke early and got breakfast. He headed out for his shift, and I took another mental sip of Kool Aid hoping he was over the worst.
<<I’m coming home.>> It was three hours into his four hour shift when the text came. <<If I stay any longer I won’t be able to drive.>>
We texted back and forth, arguing if should be driven. He was already on the way home by the time he managed to text enough teen tone to convince me of his alertness. He spent the rest of the day on the couch, hydrating to control a new fever, once wondering aloud if his body will ever let him out of limbo. Thing2 waited on him, bringing him water while I worked.
When work was done, the Big Guy and I sat on the deck as he grilled burgers for dinner. We talked about the fragility of Thing1’s plans for school in the fall and beyond. The wall of reality was crashing in.
Thing1 used his last bit of energy for the day moving from the couch to the table. He looked at the burgers.
“I’m not really hungry,” he said. “It smells great. I know I need it, I just don’t have have any desire for it.”
Thing2 had spent the day monitoring his brother in an unnatural state of quiet and was bubbling with energy as the Big Guy served the burgers. He waltzed to his seat, a speaker-connected iPad in his hands and a devilish grin on his face. He tapped the screen and a loud fart emanated from the speaker. He tapped again and a Beavis and Butthead laugh echoed into the surrounding forest.
Tap, fart. Tap, goat laugh. Tap bark causing the pets to look in our direction andThing1 to smile and then quietly chuckle.
“All that science and technology for a fart joke,” Thing1 murmured. Then he grinned at me and the Big Guy and reached for a burger. Thing2, never one to let an audience down, serenaded his older brother with more creative fart sounds as he ate until, as happens with all great jokes, the farts grew stale. But the farts and the technology had served a higher purpose.
It’s still early evening. Thing1 is already in bed as I write this. We have a visit to the hospital this week, and I’m pretty sure both of us are no longer drinking the Kool Aid. Thing1 is in the ‘really chronically ill, better heed the warnings category. He’s in the ‘no idea what his plans are past tomorrow category’. We’re off the sugar high of denial, but just because the walls fell in, doesn’t mean we’ve fallen down.
One of my favorite books growing up was Alice Walker’s Possessing the Secret of Joy which traces the voluntary circumcision of Tashi, an African woman trying to mediate her gender and and cultural identity. Through her physical and emotional recovery in the aftermath of the mutilation, she discovers and reveals to the reader that “resistance is the secret of joy.” I’ve never wanted or been able to forget the story and the beauty of Walker’s writing, but that missive burned itself into my subconscious. It resurfaces in chaotic times, it is guidance.
Since Thing1’s illness intensified this year, my resistance has been finding the right drug, the right strategy to get him well enough to start his adult life. As squeaky gassy sounds from the iPad surround us at the dinner table, however, it becomes clear that resistance is not about finding the solution to every problem. It’s about recognizing that some problems won’t be solved, but life will go on, and, if you’re willing to seize it, joy — however dinner table inappropriate — happens anyway.
Summer camp hasn’t started yet, so the boys are enjoying the fully unscheduled portion of summer. They go to bed, mostly, when they want. They get up when they’re done sleeping, lately, only time to binge watch Avengers movies together until friends call or dinner time.
This morning Thing2 was finishing up the umpteenth viewing of Spiderman – Yet Another Spider-Man Origins Movie and getting ready to move onto The Unknown Hero – A Filler Episode About A Guy we just made up but that You Need Your Parents to Buy If You Want to Understand All The Sequels when I realized I hadn’t heard the gentle sounds of found two boys not arguing all morning. I checked the clock and realize it was lunchtime.
Thing1 is normally very good about getting himself out of bed early enough in the morning to make sure he gets enough food to get his medication. At ten I had texted him it was time to get up. I saw the text was delivered, but by noon, it still hadn’t been read, and I knew today he needed a push.
I called up the stairs to his bedroom but got no answer and climbed up as quietly as possible. When I got to the top, he was curled up on his side, and, knowing he usually favors sleeping on his back, I got nervous. I called him again and still got no answer. Resisting the urge to channel my inner all Shirley MacLaine in Terms of Endearment, slapping my kid awake to be sure he hadn’t croaked in the 4 hours since I’d first called to him, I went over and gave him a gentle nudge on the shoulder. He didn’t answer, and I called again.
I knew he wasn’t dead. Very few people die from his disease. I did know his medications have been as reliable as my first Pinto, and if his flare up was turning into a scorcher, we might need to take a drive down to the ER to treat the acute symptoms until the pharmaceuticals and cannabis oil could regroup in his intestines.
Six months into his flare up, and Thing1 has learned that he’ll never not notice it. What’s changed over the last six months,though, is how quickly we let it derail a day or a life. Without being sanguine about the need to address and treat symptoms and stay in touch with doctors, we’ve also learned when to race to the ER and when it’s okay to wait for a call from the doctor. We’ve learned to distinguish the signs of a little more inflammation merely exhausting him into extra naps for the days and when the disease is firebombing his insides until he’s on the road to anemia again.
Most mornings, my main concern is that he gets good about getting himself out of bed before he moves out in the fall. We’re still making plans for fall, not always sure if we’re being determined or a little foolhardy. The reality, however, is that anything could happen between now and September, even things that have nothing to do with a chronic illness. Those things could help him on his way or completely derail him, but until those possibilities become realities, we keep plotting the points on his journey through the summer and into his future.
Monday night we sent in Thing1’s enrollment fee to UMass Amherst. It was a huge moment but not just because he had finally decided which direction the next step in his future.
He had been back on steroids for a week to give his newest drug a chance to kick in. For four days his energy and resulting mood had been on the upswing. We stopped wondering if he’d need a medical deferral for school.
Thing1’s doctor has told us numerous times that Ulcerative Colitis is a permanent diagnosis, but it seemed as if the drugs and new diet were finally starting to control it. We bypassed hope and moved directly planning for the next few months.
Tuesday he took the last dose. After work we drove an hour to Clifton Park, NY to get a suit on sale for prom. As I drove, he talked about his plans for the prom at his school and the one at hers. A week earlier the long drive and fitting would have drained any energy and interest in conversation, let alone planning.
Wednesday was glorious. I used my day off to fax forms to schools and take care of car inspections. I listened to radio talk shows and reveled in the sunny first day that truly felt like spring. We closed out the day with burgers and silliness around the table at a local haunt. It was a celebration of normal.
It was a celebration of a new journey.
We got home while it was still light out. Thing1 claimed the coveted corner section of the sectional. I got out my laptop to follow up on a few issues at work. Thing2 channel surfed as he worked on his Star Wars fan video script. Chris stretched out on the other sofa for a well-deserved post-burger nap. Thing1 went to bed earlier than the night before. All of us chalked his exhaustion up to his busy day, refusing to entertain any possibility that the glorious string of days was an anomaly.
This morning when he came downstairs, his complexion was paler again. He silently made his diet-friendly breakfast and went to sit on the sectional. I hated the question I had to ask.
“Yes,” he answered. “One step forward, two steps back.”
“I’m sorry, Buddy,” I said, trying not to call a 6’3” gentle growing giant, ‘Baby’ as I’m often tempted to do when his mind or body is hurting.
Thing2 was almost ready for school, and I ducked into the mud room and angrily kicked off my slippers.
“I give up,” Thing1’s voice echoed around the corner. I wanted to swear at something on his behalf, but instead I slid into my clogs and yelled to Thing2 to get his shoes on.
I know parenthood doesn’t come with a finish line. It’s journey. You stay with it — sometimes a little slower — for as long as there’s breath and love in you. I keep wondering, though, if you get to a point where you automatically have a useful answer for the difficult moments.
“It’s a half step back,” was what I finally came up with. I don’t tell him everything’s going to be okay anymore. I know it will, but he’s been looking for real hope and not just flashes of it for a while now. Predicting a rosy future without knowing the solution isn’t optimism. It’s dismissive of his perspective which, while often hampered by youth, is his and which his experiences validates. “I’ll call DHMC,” I said.
Together we wondered if we needed to find a new strategy. Should we talk with our doctor(s) about alternatives such as Cannabis Oil that has been recommended by other people with UC? Should we try the next drug with a 40% success rate on the list? Thing1 finished his breakfast and got up to put his dishes in the sink where they will stay until Thing2 remembers to empty the dishwasher so discussion of staying up later on a school night can ensue.
The only strategy I could devise does not include swearing at the heavens or doctors or my life or Thing1’s. It does not allow giving into tears of frustration once I dropped off Thing2.
“I’ll call and keep calling, Buddy,” I told him, peeking around the mud room. “You call me if you start to spiral or need to come home during the day.” He nodded and started packing his bag for school.
As we have been reminded so often this winter, chronic disease, like life, is a journey. We’ve travel together for a while now. We do have our own paths, and there will be more time in our lives that we’ll navigate them independently than as a team. In these rough stretches, however, I’m sticking close. I making sure that he knows we’re working for answer and that, even with all the steps backwards, we won’t let him give up on the journey.
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.