The big five-OMG is just around the corner. Friends and family began asking how I wanted to mark the beginning of the next half century almost a year before it was due, so I felt some obligation to not try to ignore this one birthday.
Just before Thanksgiving, I remembered Thing1’s birthday climb a year earlier to the top of Mount Equinox in Manchester, VT and decided that would be a fun activity (I swear I was completely sober). We thought about doing it as a fund-raiser for a charity that helps children with Ulcerative Colitis. As I investigated, though, I realized a mountain climb in April in Vermont could still involve snowshoes in some parts and would certainly exclude family members who can’t climb on a completely dry day. Finally, wanting to make health and family part of ‘my day’, I settled on running a fundraising 5K with Thing1 and Thing2 and extended family.
There was only one problem with the plan.
It means running a 5K.
Now, I know what you’re thinking, but, even though I’m roughly the shape of a cream-filled donut (and, at the time of this writing may contain almost as much chocolate), I will not be rolling across the finish line in a wheelbarrow.
Which means running that 5K.
Enter Thing1 with his concerned but not reproachful fitness training approach.
Thing1, you may recall, had his entire colon removed at the end of October and then had everything reconfigured in December. You could say it involved a couple of big operations — so big they kept us in the hospital until our bill for 2018 finished its own 500k. He should, by all rights, be still recovering.
Somehow, however, Thing1 is in better shape than the rest of his family, a fact that made him the de-facto personal trainer for Team Barlow. He takes his duties seriously, mapping out a hiking route each day (lots of hills and huffing and puffing), telling us that by the end of March it will be a running route (lots of dubious looks from his team).
The first day, I had to stop in the middle of the first hill. I had to stop in the middle of the second hill. When I stopped in the middle of the third hill, Thing2 stopped with me.
Thing1 was always just a bit ahead, often at the top swell of the hill, waiting for us. He would make a lousy drill sergeant (he’s too nice), but, as he called, “You can do it,” to me/us for the umpteenth time, I thought for umpteenth time what a great superhero he is (his super power is inspiration).
The next day I didn’t have to stop until the third hill. Thing1 was running ahead and then running back to ‘keep it challenging” (yeah,he said it going up a hill). Thing2 was running ahead and then walking slowly to give me time to catch up.
By the third day, I had started running bits and pieces of the route (I still have to stop for a second on the last hill). Today, we’ll walk/run for the fourth time.
I know the race route will be on one of the flatter roads in Vermont, flat being a relative term here, but we are keeping this route until ‘my day’ at the end of April. We may not be running the entire route by then, but my team will be finishing it together.
It’s a good way to kick off the next half-century.
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.
And I’m willing to feed that.
We finished a less than optimistic appointment and blood draw, and as we were heading back and passed a car dealer we’ve past dozens of times before, T1 spotted a Dodge Challenger prominently displayed at the front of the lot. He’s wanted to test drive one since he got his license, but no self-respecting car dealer would let a kid with a junior license and no willing cosigner breathe on the car, let alone turn the key in the ignition.
Today, however, he’s 18 and seven days, and hearing the bad news that his inflammation is still in full gear had him spoiling for a fight with the summer that has been dull as dishwater for him.
He’s been severely anemic, and even regular iron infusions aren’t letting his body produce red blood cells. He’ll engage in activities one day and then needs to rest on the couch for the next two days and regain his energy. A birthday road trip with the Big Guy exhilarated him and left him we charging for the rest of last week.
He has been resting all week prior to the appointment, saving his small burst of energy for today, and when he asked if we could try to talk them into a test drive, I acquiesced and turned into the car lot.
We haven’t been letting him drive much this summer, and he hasn’t been fighting us on the subject. I knew he was asking for this one favor that he was going to happily exhaust himself with a 20 minute test drive.
The salesman got his information. He asked if T1 had a cosigner, and I had to suppress a giggle. He seemed to be aware that we were there to drive and not but today, but it was quiet in the dealership, and he seemed happy to show a fellow car enthusiast the ins and outs of the metallic red cop magnet just outside the show room.
he went through the motions of the paperwork and then lead T1 outside. I stayed behind to prevent any attempts to play on my sympathies. my phone battery had died, and I got my sketchbook out, letting my imagination and pen meander to a field in creek near our house, since nothing in the showroom begged to be preserved.
About 20 minutes later, they pulled back into the parking lot. T1 got out of the car, beaming for the first time all summer. If I could have, I would have bought the car right then and there just to thank the salesman for being so generous with his time and giving a gift so desperately needed.
It was a little joy in the summer that’s been quite bleak for my first born, And it seemed like such a silly place to find it. But one thing we learned over the last eight months is that no matter where those little bits of joy pop up, you have to grab them and be grateful when they do.
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.