I don’t tend to be a mourner. I shed a few tears, maybe a sob here and there, and then the person I love lives on in my memories and, if I’m lucky, in the lessons I’ve absorbed from them.
I’m blessed to have been born with a small army of Great Aunts. I don’t mean that they were a generation removed from mine. I mean that they were and truly are great – awesome. They adventure. They dive into learning. They are helpers and nurturers. They have always been what I want to be when I (eventually) grow up. Kind. Brave. Extraordinary.
One of my League of Extraordinary Women passed away on Sunday night. She was a prominent fixture in our lives when Thing1 was born, helping us navigate the German healthcare system (where he was born). A counselor and mother, she helped me learn to trust myself and my love of Thing1 when I was getting my parenting sea legs.
I am thinking of her even more intensely this evening as I take a break from writing IEPs to absorb Thing1’s news from his latest visit to Dartmouth Hitchcock where he spent a good part of his senior year and what should have been his freshman year of college. We are learning, yet again, that having a chronic illness means that he has, what his doctor once warned was, a permanent diagnosis, inspite of having had a colectomy. Now, instead of thinking about summer jobs, he is faced with another, riskier surgery or the very real possibility of cancer by the time he’s in his thirties.
He always seems to take the news in stride, but I know he’s frustrated and a little frightened. Hidden in my office where he can’t see me, I give into a few sobs before acting on the lessons my very awesome aunt taught me everyday.
I know if she were here, she would offer a hug and tell me to trust my love for Thing1 as we help him over this next hurdle. She would remind us that we have the strength to get through this together and that it’s okay to cry. And, as she showed us everyday of her life, even when her own child faced a debilitating illness, she would remind us to care for others around us. She would show us how not let fear steal the happiness we do have with each other.
I will sob for a few more minutes before I get back to writing IEPs, and then I’m going to remember her by living her lessons.
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.
T1 had to go to Dartmouth for labs today. We’re t-minus 2 weeks before college classes start, And the jury is still out as to whether or not he will be there.
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.