IMG_4213I get nervous reading a book in which the villain is 100% villainous, and the hero glitteringly heroic. The author can get away with it in a specific scene, or in an article describing one single event, but if it goes on longer than that, I start to think somebody is lying. My own son, Porter, is highly fastidious about smells, tastes, textures, and sounds, rigorous about his music training, and in his free time loves sitting in the cool of the back deck, listening to a good audiobook, and strumming his lyre. (Porter doesn’t actually have a lyre, he has two, and his fife arrived today.) It’s all a very lovely, classical sort of portrait, right up until you open his bedroom door and say, “Oh, so this is where the U.S. tests their missiles.”

Both images are completely accurate, the persnickety and the disaster comfortably coexisting in the same seventeen-year-old boy. Porter’s young, so fault lines are sure to shift and change as he matures, but he will probably never outgrow contradiction. Hopefully none of us will because contradiction provides the prickling brain signals we need to propel us forward and to progress. That’s why I don’t much care for Charles Dicken’s Tiny Tim, and the whole romantic notion that being handicapped automatically makes him holy, as though he had been born with nothing to conquer.

My nephew, Sam, is eleven, and would love nothing more than to play in the NBA. Any sport involving a ball draws him like a moth to a flame; he passionately debates football stats, shoots hoops, and at age four joined a junior basketball team, because that was the earliest they’d let him in. Sam also has cerebral palsy, a dead spot in his brain caused by a traumatic birth. I remember the night he was born, watching my sister, Natalie, taken off in the ambulance, scared to death for both mother and baby. We were so wonderfully blessed to keep them both, but that did not turn Sam into Tiny Tim.

In all honesty, there very well may have been a mule in our family tree. That same hardheaded stubborn streak that assuredly caused many a social discomfort, also drove our ancestors to cross the American plains, fighting hunger, fording rivers, and conquering mountains, contributing their footsteps and wagon tracks to what would one day form the basis for Interstate 80. When they arrived in Utah, our predecessors were sent on to settle in southeastern Idaho, into such severe and inhospitable country, they prayed to God to temper the elements so they could survive. Apparently, God took an accounting of their faith and the set of their jaws, and listened. Rexburg, Idaho has since bloomed in the desert, and having the opportunity to be born there meant my sisters and I stood on the shoulders of giants. Sam bred true, but sometimes giants knock things over.

Sam has three older siblings, and their mother, Natalie, faithfully took each of them to the myriad of dentist and orthodontic appointments hanging over their heads.  Then came the fateful day when it was Sam’s turn, and Sam was not keen. He sat in that chair and clamped his mouth shut, fixing all comers with a pebbled steel stare that brooked no argument. This went on regularly for two years, Sam’s cantankerous tenacity matched wit for wit with his mother’s adamantine commitment to dental health. One day after a rather harrowing meltdown, his mother took him aside in private, “What are we going to do, Buddy?”

“I want to, Mom, I’m just scared,” he said. His mother understood, and there it remained, until the magic day he decided he was ready, and on his own settled himself into the dentist’s chair as though the previous two years had never happened, and has continued getting cleanings every three months since.

As Sam goes, that was a fairly mild anecdote, but my sister could tell you a thousand traumatic tales, her irrepressible sense of humor overwhelming her indignation at having to stand firm in so many hurricane-force gales. To be fair, from an early age, Sam’s life has been tattooed with doctors and physical therapists, eye surgeries, medication, Botox injections to loosen the tight muscles in his legs, and miserable plastic boots to stretch his calves. Nothing he wanted or could control. He always resisted, maintaining the only level of independence he knew how. It was all necessary, the best help medical science and loving parents could provide, but that doesn’t make it less frustrating, or less scary.

As you may have gathered from the saga of the dentist, Sam is unabashedly himself, which makes his advice to his sister, Sarah, a little ironic. She was about to meet her idol, actor Tom Holland, and vacillated between nerves and the ultimate thrill. “Here’s what you gotta do,” Sam said sagely, “Do your hair nice, wear some nice clothes, and be yourself, but not too much.” Sam is a legend in his own mind, by turns a soldier, and a ninja, and has so many female friends, he considers himself quite the Casanova. Recently he got too cold and said, “Oh, Mom! I could sure use one of your hot flashes about now.” Believe me, the advent of Tom Holland, the president of the United States, or Queen Elizabeth herself would not determine whether he wore his t-shirt front ways, or backwards.

Over time Sam’s regular Botox injections began to lose their effectiveness, just as they’d been warned, and the muscles in his legs gradually tightened more and more. The human body is a magnificent intertwining ecosystem in which a single step requires a million-piece orchestra to function in perfect harmony, so many bits and parts moving so seamlessly that we don’t even notice, until the conductor hits his head, and begins jerking through the music. Cerebral palsy is not a degenerative muscle disease, but a brain injury which causes motor and sensory nerves to misfire, instructing muscles to constrict improperly, wearing on the muscles, and in Sam’s case, making it progressively harder for him to walk.

For years Sam’s parents had been researching an operation called Selective Dorsal Rhizotomy, which entails opening his back to test nerve clusters, and cutting those which are firing faulty signals. The thing is, we rely heavily our nerves when we walk, it’s how our muscles know what they’re supposed to do. Sam would need to relearn how to walk in a new way, and it would be long, hard, and very painful. His parents struggled back and forth, worrying whether it was right for Sam. If he resisted the horrible challenge, he could be left in worse shape than before. How could they possibly know whether to take the risk?

The young boys on Sam’s basketball team are nice kids. They knew him, accepted him, and appreciated his skill as a shooter. But finally, the terrible day did come when little nine-year-old Sam realized he could no longer come anywhere close to keeping up with his teammates. As the magical Botox gradually faded, he saw himself struggling more and more, lagging farther and farther behind. Slowly he realized that as his muscles continued to tighten unchecked, he would likely end up in a wheelchair. It seems too much for a little boy to know, but the reality is, that surgery could never have been his parents’ decision. It was his. Sam knew what he was up against. “I want the surgery,” he said.

It’s been a long road to the operating room, with various obstacles and even a pandemic plunked in the way, but as the time finally drew near and friends and our large extended family came together to do what we could to support him, he was very touched, commenting, “People are so much nicer than I am.” This is not Dicken’s Tiny Tim. Before going to sleep he added, “Hey Mom, after I get that operation, I can say my nerves are shot, and it will be totally true.”

Friday, June 19th, was the big day, and the family kept our phones close for any news. Before going in for surgery, he told his parents, “Tell [my brother] Joseph I’ve got his man card because I’ve got an I.V. If he wants it back, he has to go out back and chop wood . . . I’m going to take the surgeon’s man card. He’s got a lot because he’s a surgeon, but I’m going to take one of them.”

He was out of surgery by noon, and in the end they cut 50% of his right lower sensory nerves, and 52% of his left. He’ll be in the hospital for two weeks, relearning basic movements such as sitting up. After that he’s looking at eighteen months of agonizing physical therapy, relearning how to walk with only half his orchestra. He will never play in the NBA, or even high school football. His gait will always be a tattletale, but he will be able to walk into the stands on his own two feet, cheering on his favorite team.

Sam is scared, I know he is. He’s also hilariously funny, and as stubborn as all our ancestors put together, which is good because he’s going to need everything he’s got. He told his mom that “to get a man card you have to do acts of manliness.” Like doing the hard thing, even though it scares you most of all.

Sam is only eleven, but already he knows so many of the harsh and contradictory realities Charles Dickens left out of Tiny Tim’s story. Consequently, Sam is also the fighter who truly understands the powerful child’s prayer embedded in Tiny Tim’s most celebrated words, “God bless us, everyone.”

2 Comments on “Sam

  1. Praying for Sam for all of this to work out the way he wants it to. All that physical therapy–it’s a good thing he’s stubborn.

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.