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The Shipwreck Rose: Imaginary Rubies

Wed, 05/10/2023 - 18:20

You know you have spent too much time in hospitals when you get into an elevator at the New York-Presbyterian Morgan Stanley Children’s Hospital and press “B” for basement, headed confidently to the basement cafeteria for a bit of limp salad-bar lunch before visiting radiology, and it is only once you are down there and the doors open that you remember this particular hospital doesn’t have a cafeteria. It’s been a long road.

My son, Teddy, has been given a more-or-less-clean bill of health by his orthopedic surgeon after — wait, I have to pause and think about this — 12 years of what amounts to rather major medical intervention. “Scoliosis” doesn’t sound very dramatic, but when it’s what’s known as “early-onset scoliosis,” and your baby has a curvature of more than 60 degrees, plus a rather startling “rib prominence” in the right-thoracic area of his back, by the time he is 20 months old, it is indeed a bit of a drama. Teddy’s spinal curvature was so bad it was crushing his internal organs. I guess I’ve always minimized the seriousness of what he went through, as a coping mechanism: “We can do this because it’s not really that big a deal.”

It wasn’t rather major, it was major. The kid had to wear a series of 17 plaster torso casts — plaster from armpits to hip bones, non-removable, no bathing and no swimming — from the age of 2 to the age of 8. The casts were so tight they caused esophageal bleeding. He underwent full anesthesia for the application of these casts 17 times.

Because I knew Teddy had a severe spinal issue even before I asked the agency if I could be approved to adopt him, I always took his troubles as a matter of fact rather than a disaster that had befallen us. On Facebook, I’m a member of a couple of groups for parents of kids with early-onset scoliosis, and have always been slightly taken aback by how much of a brouhaha some of the moms made about it. There are blogs, there are “Cast Off, Blast Off!” parties, there is a heaping lot of “Why me, Lord?” I’m not passing judgment on these other moms, however, because I understand it’s the surprise element, the disappointment element, which I was free from: If you aren’t expecting your child to have a major medical issue, it comes as a blow. It is much more frightening and feels like a misfortune. But, I mean, you spend a lot of time in children’s hospitals and you learn to count your blessings! Teddy wasn’t dying of cancer, and he wasn’t paralyzed from the neck down. I felt fortunate, not unfortunate.

Still, it was with a certain slow-dawning awe that we greeted the news last Thursday that his spine is more or less cured. His back is straight and flat. “Get out of here!” joked the orthotist, John Tunney, who had fitted Teddy with a series of lightweight, 3-D, computer-modeled Rigo Cheneau braces, a sort of stiff vest that he wore from ages 8 to 12. “Come back in nine months,” said his orthopedic surgeon, Dr. Michael Vitale. (We just need to make sure things don’t go south again when Teddy hits his teenage growth spurt.)

Teddy has known hospitals intimately, from the IWK Health Centre of Halifax, Nova Scotia, where the cafeteria was in the basement, to the Shriners Hospital in Philadelphia. Teddy is more familiar with the indignity of hospital gowns than he ought to be. I did not make a huge big stink out of Teddy’s medical saga, per se, but what I did make a huge big stink out of was making sure he had the very latest treatment and the very best doctors. I bulldozed the heck out of that. Teddy had the best doctors, in their well-cut suits, sweeping into the examination room with a retinue of attendants in their wake.

It plays back in my memory like a highlight reel. The Ronald McDonald House in Halifax, where we stayed several times, trying to make a slightly pathetic holiday out of it. Each night, a different volunteer group would come in to cook dinner, and they always baked brownies, many plates of brownies, endless brownies, which Teddy did not eat but that I ate (coping mechanism). I remember a day when someone or other had delivered an actual truckload of stuffed animals, and the animals filled a living room to waist height, like the basin of colored balls at the end of a bouncy-castle slide. Teddy was allowed to wade in and choose whichever one he wanted. He was 2 or 3 years old, and not very impressed by stuffed animals, and he chose a Mickey Mouse. A Mickey Mouse, of all things.

Once, after a casting in Halifax, Teddy and his dad appeared on Canadian television, in a promotion for Ronald McDonald House filmed on location at a McDonald’s on the outskirts of the city. (What a great organization that is, the Ronald McDonald House. How fortunate we were to have been on the receiving end of such generosity.) Once, Teddy and I were flown to Philadelphia in a small airplane by a volunteer pilot in a private aircraft. (That was PALS Airlift Services. What an incredible charity organization that is.) Teddy was calm and unimpressed by the experience of the small airplane, but I remember the view over New Jersey and the approach to the City of Brotherly Love at sundown. That was the casting when I let him play some video game on an iPad while we waited for his turn in the operating room, and he spent $220 real dollars on imaginary rubies.

All through this, for years and years, we were told that “rods” — expandable metal rods implanted in the back to stabilize the vertebrae — were in Teddy’s future. Casting and bracing were just delaying tactics, to push out the date at which he’d have to undergo the first of many spinal surgeries. But science came to the rescue. When I met Teddy in a care center in Addis Ababa in 2011, and held him on my lap while he tentatively and very gently lifted a tiger puzzle piece from a wooden puzzle, plaster casting was the bee’s knees, the new thing, and I bulldozed our way to plaster casting. But nowadays, the fabulous, newfangled science is the laser-modeled 3D Rigo brace, and the two methods have straightened Teddy out. Teddy is a poster boy.

The rock star orthopedic surgeon from New York-Presbyterian, Dr. Vitale, took a smiling selfie with Teddy last Thursday to text to Dr. Ron El-Hawary, the rock star orthopedic surgeon from the IWK. These rock stars all know one another. Teddy is a cool customer. I’ve always acted a bit foolish during these interactions with the Very Important Doctors. I clap my hands together and wag them in front of my chest, and get almost tearful, and get overly profuse. This is because just saying “Thank you!” and “Great, great” doesn’t adequately express the actual gratitude level, and overdoing it seems a better course. This is surely embarrassing to my son.

It’s possible that enduring all this will strengthen his character. The story repeated most frequently in our family about Teddy is the story of how, when he was 3 and 4 years old and we still lived in Canada, he wanted so badly to be a demon on ice skates. He went for skating lessons with classmates from Little Peoples Place daycare, evenings at the Shelburne Arena, the community rink where the whole county gathered for lessons and hockey games. Teddy and his best buddy, Quinton, would sit on a bench while Mom laced up their skates and they’d charge out onto the ice at full tilt. Quinton would rip across the ice like a polar bear cub on blades, but Teddy wore a bulky plaster torso cast and was top heavy, and when he charged out onto the ice, he’d fall and fall and fall and fall. Then he’d get up and get up and get up and get up. We watched from the stands, week in and week out, as he refused to give up. He never gave up, but kept going out there. He’d stand very still, and then inch his skates forward, very, very slowly, arms out, while the rest of the class turned figures and flew backwards.

What is going on is whatever you tell yourself is going on. Sometimes a bit of delusion is the best medicine.

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