There has never been a time when they haven’t shared each other’s lives. Aviana arrived first, by a month; I cuddled my little black-haired daughter and waited for my friend Jean to have her baby. We were living on the same Bruderhof community for the first time in years, and it was delightful to imagine our kids being best buddies, pottering in the sandbox, learning to swim, stepping up into first grade….
But cerebral palsy made Robert’s every milestone very different. While Avi progressed like clockwork, Rob had to work his hardest to coordinate swallowing and breathing, battling to get half an ounce of infant formula down and then keep it in. One cough would undo everything, causing a traumatic projectile spit-up that put mother and son back beyond square one, and sometimes reduced us all to frustrated tears. What do you do if you can’t feed your child? What do you do if you can’t help your friend?
When my own brother was navigating disability in the 1980s, it was daunting for our family to hear a bleak Greek chorus of neurological prognoses – “He can’t do this; he won’t do that.” Some turned out to be true; many not. So as Rob and his parents started their specialist hospital treks, I worried about the weights that might drop on them. But one wise neurologist told Reuel and Jean, “Take him home and love him. Robert will show you what he can do.” Hallelujah, doctor.
Cue milestones, one after the other. Cue crazy times, one after the other. Luckily, Rob has a solid family around him (three big brothers, and now a firecracker of a baby sister), an invested crew of teachers at school, and a responsive medical-therapy team. He also has the most loyal set of friends a kid could wish for, ready to cheer on every accomplishment and rally at every setback. When your friends learn to toddle by hanging onto your walker, you know they’ve got your back.
Much of Avi’s daily activity has been within Rob’s orbit, especially when I signed on to learn his afternoon routines and care. We were all finding out together how to master G-tube meals. Tube and pump – how tricky could it be? Answer: very. How slowly do you run the pump? When is the best time to pause for water? How do you make sure no air bubbles sabotage the supper?
Sometimes he’d burst into loud cries, putting me through the paces of all the things that might be causing pain, jangled by that panicky ache familiar to anyone who’s ever loved someone who can’t tell you where it hurts.
Right at that confused juncture, a small personage would predictably appear at Rob’s elbow. She’d dodge a few tubes, plant her feet on the chair casters, go nose to nose, and inquire, “Should we sing, Rob?”
Singing: it’s what friends do. And we don’t need lullabies at this point, or Old MacDonald – who even cares if he has a farm? We’re not singing to a baby here; we’re striking up a rhythm for a friend who has the blues. But what kind of song applies in a time like this?
A friend might also know the right playlist. “Mom, what if we sing the songs you sing to me when I’m sad? Like the red, red robin?” (My dad used to sing golden oldies to me, because his dad sang them to him.) So that’s what we would do. We’d sing about summertime and the living being easy when it absolutely wasn’t. We’d sing about the sunny side of the street on days when the whole street was clearly in deep shade. We’d declare nothin’ but blue skies from now on, and then wonder what if that sky should fall, and decide that as long as we were together, it wouldn’t matter at all.
Rob thought our attempts were just fine. Almost always, he would whip around and lock eyes with Avi, and join the spirit of the song being chirped in his ear. We’d cycle through every one we knew.
One song, though, rose effortlessly to number one on the charts. It’s a joyous little ditty of Pete Seeger’s, and I know nothing about why he wrote it, or who he wrote it for. Here it is:
Just when I thought
All was lost, you changed my mind
You gave me hope (not just the old soft soap),
You showed that we could learn to share in time
(You and me and Rockefeller)
I’ll keep pluggin’ on
Your face will shine through all our tears,
And when we sing another little victory song,
Precious friend, you will be there …
Singing in harmony,
Precious friend, you will be there.
After a few rounds, I began hearing a new name replacing “rocky feller’s”: Someone discovered that “Robert Clement” fits in there just fine, and that’s how it’s stayed since.
Every one of Avi’s birthdays, Rob has come over to celebrate. And they’ve sat on the sofa and sung their song. Here’s how it sounds:
Every one of Rob’s birthdays, Avi has made sure we all go over and serenade him in his living room.
Except for this year.
It was a brutal winter already. Who needed a pandemic targeting people with fragile lungs? Rob has fragile lungs.
He had spent most of January in bed, under a heating blanket, his oxygen numbers needing to go please-just-a-little-bit higher. Every day he wasn’t in the kindergarten classroom, Avi talked about where he wasn’t, and why he wasn’t. We went to visit him, but he was sound asleep, under three blankets, oxygen 83 percent. We sang his song, and he didn’t twitch an eyelid, but his numbers started climbing up into the 90s. (His nurse will back me up on this.) But wake up? Nah. How about in spring?
Spring brought the virus. And though we tried hard not to let a little girl hear too much, there were plenty of adults around our house saying dire things when they thought she wasn’t listening. She thinks she understands why she’s not going to school, or to Rob’s birthday party. She only knows one person who has trouble breathing, and if staying away will help him breathe, well then …
She’ll make sure we all go over and bellow through the window! Here’s what Rob thought of that:
Parents have the sacred burden of hearing their child’s last thoughts before sleep. These nights, we talk about turning our fears into prayers, and then leaving them in God’s keeping. The simple version of most of the prayers I hear: “Precious friend, please be there.”
Dear God, watch over them all. And let the time for victory songs come soon.