Stuck in Paradise

Stuck in Paradise
Wild weeds

Our rural internet is like a Pinto with a left turn signal on — it’s just waiting to crash. Which is how we found ourselves stuck side of the road as we made our way to neared the diner with wifi.

I honestly don’t feel like eating much today. I am recovering from food poisoning last night (karma telling me to get my butt back on my diet). But things have to get done, and those things have to happen online sometimes.

We’re driving Thing1’s 19-year-old Volvo wagon, a vehicle that’s become his project car. We had to pull over because we started smelling smoke. While we were waiting for the senior mechanic in the family to arrive and diagnose the issue I started making phone calls and taking care of some needed business. 

Meanwhile, the boys hang out in the car. I shuffled through the weeds in the fairway as I’ve talked with a customer service rep. She occasionally put me on hold, and I’d glance over to the car to make sure T1 and T2 weren’t killing each other and then at the weeds, each time at a different angle and each time noticing a pink or yellow blossom at the end of the green stalks that made them wildflowers, not weeds. It was a good place to be stuck.

Over at the car, Thing1 was fist-bumping Thing2, a fact he would reveal after the crisis with the exclamation,

“This is the greatest day in the world!”

Keep Your Head in the Clouds

Keep Your Head in the Clouds

So this happened while I was hunched over my keyboard working inside today. I know it was just this morning because I had looked for the first open day lilies when I came back from my morning errands before diving back into the mom cave for work.  I keep my head pretty well buried in the Q&A of my job most of the day, but sometimes it pays to get your head back in the clouds.

The Living is Living

The Living is Living
Thing 1
Thing1 Keeping his Eyes on the Future

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.

Mountains of Kindnesses

Mountains of Kindnesses

I’m just getting ready to spend a little mom time with the boys this morning when the phone rings. I answered as soon as I see that 603 area code. It’s Dartmouth Hitchcock Hospital.

“Hello?” I try to keep the shake out of my voice. I’m trying to remember what tests we’ve had run for Thing1 recently. But it’s not about any test, at least not any that Thing1 has taken recently.

“Hi, this is Susan,“ I don’t need her to tell me whose office she’s from. We’ve been in contact constantly over the last few weeks. She’s calling to make sure the medication approval went through on the pharmacy end and that we have received and given the first dose. It’s a checkup on the insurance company’s and the pharmacy’s test of following through.

Susan and her colleagues have been warriors for my son for the last month, tirelessly shuttling information back-and-forth between the doctors and the insurance company, re-submitting claims as often as they have to in order for him to get the drug and the dosage he needs. As I talk with her, she talks about strategies they use, and I realize this woman who went to nursing school to learn the intricacies of the human body and how to take care of it does this dozens of times each day for the rest of the pediatric patients that visit their practice.

We talk more. She asks about Thing1’s college plans. She makes a note to make sure the student disability services at his school has documentation for his disorder to make sure that he can stay healthy and on track with his future. She is so casual about the mountain of kindnesses, and I can tell she sees it as just another extension of taking care of her patients.

It is.

But I’ve come to see the nurses’ devotions to their patients’ financial ability to get the needed treatment, the efforts to keep a life limited disease from being the new normal, as nothing less than heroic.