Walking the labyrinth

when life takes you in some unexpected directions, including to the ICU

Me and my little brother, my dad (whose hair and shirt can only be explained by the fact that it was the early 90s), my Uncle Randy, and my Papa (who died a year ago)

I have a few interesting things I want to write about, but the past couple of weeks have been tough. Several extended but close family members are experiencing serious health problems. But suddenly and unexpectedly, my Uncle Randy is in ICU on a ventilator.

For those who don’t know, he has cerebral palsy. Because of my grandparents’ care and advocacy, he has outstripped his life expectancy by multiple decades. There weren’t a lot of options for kids with complex medical needs in the late 50s and 60s. So they made options as they went along. My dad, though 15 months younger, shouldered more than the average sibling while growing up. My grandma tells the story of how Uncle Randy, unable to walk until much later in childhood, once went missing for a few minutes: she discovered he’d rolled himself out of the house and to the next-door neighbor’s yard to play.

Uncle Randy achieved a lot despite his severe physical disabilities. He went to college, he participated in advocacy for the ADA, he played sports and special Olympics, he taught himself to speedread (he has hundreds of books). But a few months ago, about a year after my grandfather died, he had to go into a skilled nursing facility. My grandmother just isn’t physically capable of handling his now total-care needs.

Uncle Randy and baby Harry, 2018

On Tuesday when my grandmother visited him, his condition had become critical even though he’d been fine a few days earlier. I learned today that he has aspiration pneumonia and sepsis, probably coming from an infection developed at the site of one of his long-term medical devices.

Though once he could grab his own lunch from the fridge, and bathe himself, and read dozens of paperbacks in his recliner, and make his own way around his college campus pulling his roller bag of textbooks, he now can’t sit unassisted. He can’t use even the handicap-accessible bathroom. He has to be fed small bites so he can swallow safely; a couple of years ago my husband had to perform the Heimlich on him at the dinner table. The spastic aspect of his quadriplegia has worsened, which means he can no longer even unclench his fists.

Today when I visited him I held his hand for a little while, and even while deeply sedated on propofol, his fingers wouldn’t straighten.

I keep thinking about this one time when I was a kid and we all went to Disneyland. I’d hop onto Uncle Randy’s lap in his wheelchair and grab onto the steel armrests, pretending to drive around Main Street USA on a Star Wars speeder bike. The seriousness of his condition, the eventuality of his decline, didn’t occur to me back then. He was just Uncle Randy.

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The big boys finished school yesterday, which feels like a relief because now we have weeks and weeks ahead of us with very few obligations: a welcome respite. I’m really proud of their accomplishments this year. Ethan made honors society and all-county band. He starts high school in the fall. Oliver made the highest reading score possible on his end-of-year tests, and the second-highest math score.

The one obligation we do have is a flute performance group Ethan is joining for the summer. His first weekly practice was yesterday evening at Shallowford Presbyterian Church. Noah stayed home with the little boys so I could have an hour to myself. Besides, I enjoy any time I get in the car alone with Ethan. It’s where we do most of our talking.

Once he got checked in with the other flutists (what do you call a group of flutists? a flurry of flutists?), I noticed some signage pointing to a tucked-away Columbarium, Prayer Garden, and Labyrinth. I spent some time in the small Columbarium and read every name. Several of those memorialized passed away in their 20s, and all the young people there were fairly recent inurnments. I wondered why, but also how this church community handled the loss of so many young adults connected to it.

Then I walked the labyrinth. I’ve never walked one before.

One thing I noticed was that the longer I walked, the closer I technically got to the end, but at times the path took me physically farther from the finish. I was making progress even though it didn’t look like I was getting closer to reaching the center.

In the past three years my grandfather, one of my grandmothers, and one of my uncles have passed away. My last living uncle is still here, but tenuously. And of course, though there have been nearly 8 years since my mother-in-law died, her loss will in some ways always seem recent. I remember how it feels when you know someone is slipping away: it feels like walking the labyrinth.