He Has His Own Definition of Forever
by Patti M Hall
I call them the Invincibles: those teenagers who walk across parking lots and streets in defiance of the “look both ways” that you can be certain their parents repeated laboriously to them as toddlers and preschoolers.
I see the Invincibles stepping off of sidewalks, with hoodies pulled up and forward like the blinders on an anxious horse, ear buds wedged in to eliminate any possibility of hearing an approaching car, bus or steam engine. It only takes a moment after I’ve slammed on my brakes and uttered something inappropriate, that I catch myself smiling–they are exactly as they should be. Good on them, my heart says. I want that for those kids. I wish that for every child—to be able to walk around the planet like nothing can affect them, all “I’ve got this” swagger.
My children don’t have that, and it’s not because I worked any harder at teaching them the dangers of the world than other mothers. They learned the lesson of their own vulnerability —their mortality—thanks to modern medicine and genetics. Neither of my boys carries themselves like they are invincible, because they’ve learned they aren’t. Even though it may be a cliché, it is no less true—once a life threatening diagnosis touches you, you can never live the same way you once did.
Growing up is tough enough, however much we convince ourselves that our children have the best possible opportunities—the technology, the services, the affluence that is unrivalled in human history—there is always a common denominator; a levelling influence, one factor that forces humility on all of us, health.
We do everything in our power to protect them, these tiny versions of ourselves, these delicate helpless humans that we bring into the world so long before they are able to care for themselves. There is only one thing more devastating for us parents than having to admit our child is beyond rescue, that circumstances have pressed our son or our daughter outside the scope of our parental toolbox. Seeing what living in full knowledge of their prognosis does to them, that is worse in my view. That is the hourly, daily reminder that is worse than the shock of failing to protect them from invisible, metaphorical monsters. Not only is my son unable to live as if he believed he is untouchable, he can’t even remember a time when he felt that. This is the greatest anguish of my life.
My son was diagnosed with an ultra-rare and incurable disease, Gigantism, when he was sixteen. I carried the weight of the details of his medical journey, guiding us through diagnosis, treatment and management, because he wanted it that way. He said, “as long as you have the answers to the questions, I’ll ask you what I want to know.” It was our deal.
So, while I got a Ph.D in his health, I was never certain how much he wanted to know. I had no way to judge how he was processing it all. That was until one short conversation shone a spotlight on his agony, making my denial of the impact of the rare disease odyssey on him impossible to deny.
One night as my two sons and I were hanging out talking about our day, Aaron mentioned a sign he’d seen on the subway that afternoon.
“I saw this sign today. It read: ‘I’m going to live forever—it’s going pretty well so far!’ I thought was a good one,” Aaron said.
“That is a good one,” I said. I thought he was done and looked down at the book in my lap.
Then, he spoke up again, “I can say the same thing—“ I looked up at him because his voice sounded muffled. His face was turned down, buried in the fur on the back of his beloved golden retriever’s head. “I’m gonna live forever. My own forever.” I watched as he gulped, turning his face up to me so that I could look into the wet eyes of my baby, my toddler, my teenager and at once my grown up hero.
“It’s true, after all.”
They walk the Earth each day, redefining the milestones and boundaries of life for themselves. They may not be invincible, and perhaps we wouldn’t ultimately want them to be untouched by life, but I would give anything for him to believe it was okay to keep wearing headphones and strutting across parking lots, rather than know what only seasoned adults should realize. Surely children shouldn’t need to reconsider eternity, just yet.
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