Care in the Age of Corona

Care in the Age of Corona

A few weeks before exams, Thing1’s school sends around a mailer that lets parents fill out a greeting card and select an assortment of “healthy” candies and snack foods to get through the rigors of studying and testing. Most of the letters from Thing1’s college are pleas for money for one reason or another, but this one always gives me the giggles.

The first mailer instantly had me mentally grumbling, “When I was your age we used to walk 50 miles in the snow without any care packages to take our exams”.  College these days seems a bit like summer camp but with amenities like all night cookie delivery and bubble tea joints on every corner (and, in the case of Massachusetts, actual joint joints on more than a few corners).

Care packages seem more than a little redundant.

But this week there’s something I didn’t have when I was his age. In addition to the suppressed immunity I never had at any age, Thing1, who has faced his mortality more than once in the last two years, is hearing all the same news we are about the new Corona virus going around.

The new virus which has people suddenly washing their hands (who were these people who weren’t buying hand soap before last week?) and giving Vulcan “Live long and prosper” greetings instead of handshakes is the next thing we’re worrying about for him.

Thing1 takes things in stride, but his school has decided to keep dorms open over spring break to encourage people not to travel. His hospital has reported cases and is discouraging scheduling of new surgeries, including the next one he needs, in anticipation of an increased case load. I know that, despite his ability to take life’s little challenges one day at a time, this virus and all its potential implications are at least in the back of his mind.

Most of the time, COVID-19 news interests but doesn’t overly worry me. I’m mostly healthy. Thing2 is abundantly healthy, and the Big Guy is a rock.

The implications for Thing1, however, are on the top of my mind when I think too long about this new virus. So, even though I’m going to remind him that, back in the dark ages, we had to study for exams by candlelight and write our essays on bark using charcoal when we were his age, I’m sending him a a little care in the form of some hermetically sealed candy and snack food.

And there will be at least one giggle when I hit send.

Walk With Me

Walk With Me

It’s my second week of being bed or chair-bound as my foot recovers from a total overhaul. It’s been really inconvenient, but, ironically, it’s give me a chance to take a different kind of walk with one of the best people I know.

This time last year I was still writing mostly about Thing1’s journey with Ulcerative Colitis. We thought, at the time, that journey was almost over and that he was starting a newer, more adventurous one. Then his body recently reminded us that a diagnosis of a chronic illness is a permanent one.

His chronic illness is classified as a disability. It took me a little while to really understand why it’s classified that way, but as I watched his disease derail a year of his education and govern so many other major and minor life decisions, I gained a better understanding of how invisible illnesses can cause impairment. It wasn’t until the last two weeks, however, that I understood how that feels.

As someone diagnosed with bipolar disorder, I can sympathize and empathize with some of the impacts of invisible illness. Depression can impact your ability to function at work and your ability to parent effectively. It does not, however, turn the simplest activities, such as showering, into activities that need extra equipment or preparation. It doesn’t keep you from reaching the microwave. It does not have you planning your schedule when you might want to go to the bathroom next, let alone how to return to work.

Thing1 is less than half my age and wrestled with all of these issues and more in the last few years. These questions have determined where he would live and if he would go to school on any given day. They are determining if he may miss yet another year of school and when he will begin his adult life.

Spending a few weeks navigating the activities of daily living that are usually take for granted has been a pain in the neck, but it’s also given me a chance to walk with T1 in a whole new way.

Living in Lessons

Living in Lessons
Tree of the Knowledge of Good

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.

 

Keep Walking

Keep Walking

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.

Pie in the Sky

Pie in the Sky

I went out for a treasure hunt after work, sure the entire blueberry crop would have been poached by Japanese beetles. Fortunately, the heat that every Vermonter has sworn they won’t complain about and the humidity we will gripe about seems to have produced a harvest big enough for us and the bugs. I should be happy with enough for a few desserts, but, this year, I want more.

 

This time most summers we’re planning a trip out to Lake Michigan for an almost annual, unofficial family reunion near South Haven, Michigan. We’re not this year.

 

I’ve been going to that spot in Michigan since I was a fetus. My grandparents are buried there. We’ve solved the world’s problems sitting around the table on the porch there, watching the sun set over the lake, noting how much the wind in the trees sounds like wave lapping the shore. We’ve forgotten the answers before bed and celebrated the fact of family there for almost every summer of our existences.

 

But It holds another meaning for me.

 

Eighteen years ago, the Big Guy and I missed Michigan for the first time. In April, my job had moved us to Germany while I was six months pregnant, and Thing1 was due at the end of July. There would have been no travel that summer.

 

Thing1 refused to vacate my womb until the last possible minute. The extended family had convened along the lake. Early in the morning the first week in August, the Big Guy phoned th gang in Michigan. They huddled around their speaker phone, as the Big Guy, Thing1 and I took turns talking, crying and babbling about the newest member of the family.

 

The next year we were all together along the lake.

 

We celebrated Thing1’s first birthday there.

 

We celebrated his second birthday there and, because his birthday falls smack dab in the middle of blueberry season, we celebrated with blueberries and cake.

 

Thing1 has celebrated almost every birthday there with his parents and grandparents and cousins, always with blueberries, and for the last four or five years, blueberry pie.

This summer when Thing1 turns eighteen, we won’t be in Michigan because the Big Guy is getting ready to get a new knee. It’s a good reason to stay home.

 

As I write this, however, we’re getting ready to take Thing1 back to the hospital for the second time this week to address his anemia, to talk about a new medication and possibly stronger measures to get his auto-immune disease under control.

 

He is barely eating. He is getting winded after short walks. He is not looking like his normal almost eighteen-year-old self, and we need for him to get at least a little of his own back before he flies our coop.

 

Last summer, just before we left for Michigan, Thing1 marked his birthday with a hike up the back of Equinox Mountain. He texting us updates of storms and bears on the path until his cell phone died and shortly before he home announcing that he felt truly alive.

 

We don’t know what the next few weeks or even months hold, but, barring a miracle in the next few weeks, there will be no 10 mile hike. There will be no blueberry festival or typical 18th birthday bash.

 

There will be a celebration, however. Even if it’s just our family of four cuddled on the couch, we will make sure he knows that, no matter what the circumstances, his being part of our clan for the last eighteen years, his having made us a clan, is something worth celebrating. And, if I have any say in the matter, it will be with blueberries.