The other Friday night, Thing2 had a school dance. Thing1 went over to SuperGal’s house for a quiet pre-prom night hang out. The Big Guy went to play music with his traditional music band at the Wayside Country Store. For a few minutes, work was finished, school was out and I was somehow alone.
Then at 6, Thing1 texted he was starting home early, so he and I went to a new food truck discovery in Cambridge, NY. We got back just before the Big Guy finished up his gig. Thing1 went to bed early as he has been these days with his hair-trigger colon still sapping his endurance. The Big Guy and I suddenly had the giant sectional all to ourselves. I had to keep reminding myself that Thing2 was going a sleep over after the dance since, even with the TV turned up to 50, the silence blared, heralding a new era.
When I started this blog about 6 years ago, Thing1 was just starting to pull at the fraying edges of my apron strings. This year, despite the needs created by an acute episode of his illness, he’s been shredding the one on his side. What I hadn’t expected — but should have — was that Thing2 would start chewing at his share of the strings at the same time.
I’m wearing my UMass Mom t-shirt as I write this. It’s my new apron. There are no strings on it. Like that apron, it’ll get a few tears on it over the next few years, and, hopefully it will have a companion when Thing2 flies the asylum in a few years.
The geography of our new lifestyle is similar to when we were double-income-no-kids (DINKS) even if the absence of money reminds us that no matter where our kids are, there it is. Still, penniless or not, it feels like we’re entering new territory.
I honestly wanted to do nothing more than absolutely nothing yesterday.
Yesterday, I woke up as a square. An odd square. A product of two odd primes. It’s the fourth time I’ve been the square of primes, and, in all probability the last, as I’ll have to be 121 to celebrate the next truly odd birthday. For this birthday oddity I’d planned a trip to the University of New Hampshire for the last college visit before my first son has to figure out which dotted line he’ll sign.
But that wasn’t what made it odd — or wonderful.
For the past two weeks Thing1 has been dealing with anemia brought on by his disease. He could not tolerate a drive of any length, so we had postponed the UNH visit already. The newest drug, however, seemed to hit pause on his symptoms, and his affable nature had re-emerged over the last day or two. We knew this was the last best chance to go.
We got Thing2 to school and then headed down to the hospital. Thing1 needed bloodwork to check trough levels for one of the five drugs trying to control his auto-immune disorder. It was already 9 by then, and Thing1 was ready for Breakfast Number 2 — a side effect and a sign he was starting to feel more himself.
Treating the day like a field trip day (if it were run by an really over-indulgent teacher), I took him to our favorite diner in Bennington (my next blog will be titled ‘Diners I have Known’). We’ve been going there since Thing1 was in a car seat carrier, and my eyes started sweating as I watched my gentle giant pick out two entrees for a ‘snack’ (although it could have been tears brought on by the impending dent in my wallet).
“Mom,” he said in that tone that said other people could see me getting emotional as my baby prepared to leave the nest. There would be a few more warnings.
After breakfast we headed east toward the other side of Vermont and then to the east side of New Hampshire.
We stopped for a break during the three and a half hour drive. A girl playing scratch tickets, reminded me of a failed lesson in probability from another road trip a decade ago. On a whim, I bought a ticket, thinking he’d be my good luck charm again. Ten years ago, I’d told him we’d paid a tax on people who are bad at math and wound up winning on three $50 scratch tickets in a row. I’d chalked it up to some ‘magic’ which had everything to do with being with my seven-year-old and nothing to do with Math. Yesterday I lost, of course. Thing1 is too old and skeptical to channel that kind of magic anymore, but we were both laughing as I scraped the silver goo off the losing numbers. He’s still my good luck charm.
It had been a long time since I’ve heard Thing1 really laugh.
We got UNH and asked our questions before walking around. Thing1 loved it and was even more undecided about his future. A few more drives around the bucolic campus, we headed back to meet the Big Guy and Thing2 in Vermont for dinner.
It poured most of the time until we got near the Vermont border. It rained from Bellows Falls to Londonderry and got foggy as we headed over Bromley mountain to Manchester.
My body was getting weary from the travel and from the constant travel and worry of the last few months. It was as if a day of not worrying — of seeing Thing1 happy and debating over pleasant aspects of his future — had let my muscles relax too much for a moment.
When we got the the restaurant, Thing1 mentioned a worrying symptom that had appeared, and we knew the tension release was temporary. In reality it’s always temporary, but it is always welcome.
When we got home, I got my sketchbook, planning to doodle and promptly passed out on the sofa with Thing1 next to me and eleven year old Thing2 draped over the cats that came to sit on my legs. I woke up long enough to send Thing2 and myself to bed for the dreamless, satisfying sleep that only an exhaustingly perfect day can produce.
And the oddest thing was that it was the best present I hadn’t even thought to ask for.
I started this blog about 6 years ago as an assignment for a writing workshop. It started as a way to share writing and drawings and evolved into a search for an authentic life that still continues.
I spend the majority of my time working at home. Most days, the only people I see are the Big Guy and 17-year-old Thing1 and 11-year-old Thing2. Our family conversations are hardly devoid of any meaning, but tend to focus on “what’s for dinner?“ and “can you pick up the kids?“
The only other regular conversation I have is with my blog. It has helped me deal honestly with bipolar disorder and embrace the dinner table stories that I once pooh-poohed. Over the years, however, that conversation has also led me to question if I was living in my truth and how to get to a place where I could.
One of the truths I discovered over the last few years is that I need to write and draw. When my life gets too congested to allow for a regular time for art, I have resented it.
Last fall, I reorganized my life to carve out time for creativity while building a new career that served the greater good. I started working weekends so I could go back to school, temporarily bowing out of a weekend writing class that had helped keep the spark lit for several years.
Murphy’s Law, however, is still in effect. My precise work schedule surrendered to the chaos of the holiday shopping season. And the bottom dropped out for Thing1.
Thing1 was diagnosed with an auto-immune disorder a year earlier. Despite promising early results with medication and severe diet changes, Thing1’s body began shutting down a few days after Christmas. It was barely a week into winter when, knowing which battle mattered most, I withdrew from classes.
Thing1 was hospitalized near the end of January for assessment and treatment. As he lay in recovery after a procedure, I struggled not to cry as his doctor told us that his illness was quite severe and laid out his options. Some required injections or infusions. All of them carried a risk of lymphoma, one of them fatal, especially in young men.
When we got him home, we focused on getting him back to ‘normal’ but quickly realized ‘normal’, like much in life, is an ever-moving goal post. We worked with the school to make sure he stayed on track. We worked with doctors to get him through flu season, keeping them on speed dial through nervous nights.
And, when time permitted and sanity demanded, I blogged.
I still get weepy at night in bed when everyone’s asleep or in the car when no one’s around, even though I know we’re incredibly lucky. Every time I pick up a prescription with an $800 copay that’s been covered by my insurance from work, I know we could also be sitting at our round kitchen table trying to find things to sell to pay for each drug or worrying about bankruptcy.
Long before this blog reignited my creative spark, Thing1 was teaching me patience and determination as I had never understood them before. The self-doubting, self-hating person I had once been before his birth was dissolved in the breast milk and tossed out with a meconium-filled diaper, leaving only Thing1’s mom who had happily reorganized her entire life around his needs.
So when my college sent out spring registration notifications, I knew I would not be signing up. I also knew I will be carving out creative time around my current career until I’m sure Thing1 can fully stand on his own and obtain his own sufficient insurance,
And that’s okay because there are two truths in my life. And, as Darth Vader once said to his offspring, “There is no conflict”. Not for me.
My truth is that creativity matters to me. My bigger truth and the key to living an authentic life for me is that without being true to Thing1 (and now Thing2), I don’t know that anything could keep that creative spark lit.
“The fever’s down a bit,” I texted back. T1’s temperature had peaked at 107 for about an hour in the middle the night, and we had spent the rest of it calling his doctor and forcing fluids and more Tylenol. Super Gal and T1 had texted each other a few times in the wee hours of the morning until T1, out of the danger zone, fell into a deep sleep and forgot about texts.
I knew she’d been feeling under the weather—no one has escaped this winters ravages – and it made me smile little to see them reaching out to each other, even if, between illnesses and normal senior year time pressures mean they can’t be together much right now.
They’ve been seeing each other for a couple of years now. They’re planning their third prom together which, in high school terms, is practically a golden anniversary. Neither of them knows where they’re going next year or if they’ll end up in the same place or what they will do with their lives beyond that.
I know statistically that most people don’t often end up with their high school sweetheart, but everything about the way they have supported each other over the last few months tells me that there’s a deep friendship there that can survive a lot and be a source of comfort and strength for each of them. And right now it’s nice to have a small reassurance that, in the long run, these kids will be all right.
Thing1 was diagnosed with an autoimmune disorder almost 2 years ago now. We knew the diagnosis would come with big changes to his life, and this winter we really got to understand what it means to live with and care for someone with a chronic illness.
We were still somewhat prepared for it.
What we weren’t prepared for was going through very similar routine with Thing2. After several months of ER visits and tests and flu‘s, we now find ourselves between a number of diagnoses, including a possible tickborne illness.
Thing2 has found himself and completely unfamiliar territory. My superhero whose used to jumping over tall rock piles in a single bound it’s only found himself with barely enough energy to walk from chair to bedroom.
Except during the worst of the pain, however, he still my superhero. I still see his enigmatic little smile, and he still finds ways to experiment, even if it’s only with making movies with special on the iPad (full disclosure: I could not do it) or testing theories about how your atoms are not really touching your brother that he heard on Cosmos (science hurts sometimes).
I would donate an organ if I could make him better tomorrow, by doing so, but, as Thing1 has Learned over last year, what doesn’t kill you doesn’t just make you stronger, it also makes you smarter.