Sometimes to Love What You’ve Got, You’ve Got to Mourn What You Don’t

 

I had dreams of having sons, big dreams of hikes and bike rides and swimming holes: journeys and adventures that grew larger and more daring with the boys. There were things I wanted them to do and places I wanted them to see, places on top of mountains. Some of those dreams have come true. My sons spend hours in the backyard rummaging under bushes, returning to the house muddied, jubilantly displaying whatever critters they’ve found. We’ve hiked to beautiful vistas, camped in forests and on islands, caught turtles and frogs, even rescued a one-legged duckling. Still, mixed in among all of those great memories is one perennial reality: these adventures are not what I had dreamed.

We’ve got four sons: Jacob, Caleb, Isaac, and Adam. With the arrival of each baby, the dream was put on hold. Babies don’t hike or ride bikes. They grow in other ways, and their developing capabilities become adventures in themselves. There is a blossoming excitement watching a child wake up to the world and experience those magical moments of learning to walk, run, swim, and ride a bicycle.

 When Isaac was born everything seemed fine. He did all of the things a baby should do. He cried, slept, rolled over, sat; but then he stopped. He didn’t crawl, didn’t cruise, didn’t walk. He’d sit on the living room floor as his brothers ran around him, and cry.

My wife took him to the pediatrician for his nine-month check-up and returned with the alarming news that Isaac was nearly blind. Somewhere between six and nine months he had developed cataracts in his eyes. While the diagnosis was frightening, the solution was simple: remove the cataracts and Isaac would be able to see. He would need to wear glasses, might need some vision and physical therapy, but he’d bounce right back to “typical.” We sat with a physician who told us by the time Isaac turned five no one would ever know there had been a problem. That didn’t happen.

Therapy ran from weeks to months with little progress. It took six months for Isaac to transition from sitting to laying, a year for him to crawl. Appointments grew from follow-ups with the ophthalmologist to consultations with neurologists, geneticists, and developmental specialists. Eye check-ups grew into MRIs and biopsies. Eventually, we sat in a room with a doctor who told us it was time to formally accept what we all knew: Isaac had cerebral palsy. Somewhere, in the midst of those chaotic days, a dream died.

I need to be clear. I don’t regret Isaac. I don’t regret the journey we are on, not one teardrop, not one hour sitting in a waiting room, not one second with my stomach perched at the back of my throat, fearing the doctor’s next words. Isaac is a gift. I don’t regret him; I celebrate him. But he was far from what I expected.

The dream died quietly, unnoticed. While we raced from appointment to appointment, it sat neglected in some dusty corner of my mind and slowly faded away. One day, I found a few minutes to breathe, went looking for some excitement, some inspiration, and found that my dream was dead.

Isaac is vastly more valuable than any imaginary potential I held in my mind, but to fully embrace what life with him meant, I had to mourn the dream that would not be. That doesn’t mean I resent Isaac. He was just new and unexpected, and to embrace the new, I had to say goodbye to the old. I had to accept that something in my life had changed, something had been lost, and I had to mourn that loss. I wasn’t going to through-hike the Appalachian Trail or ride the Continental Divide with my sons (I never said the dream was realistic). Even a hike to one of my favorite local overlooks seemed daunting. I had to bid those things goodbye, feel the slow ache in my heart at the loss of a thing loved; and then turn my back on that dead thing, look toward a new life, and love it for what it was.

Family life with Isaac is still an adventure. We go on hikes and bike rides, but they are shorter and harder than the dream had promised. Instead of supplies for an extended adventure, I carry my son on my back. My waistline is slimmer, and my thighs thicker from riding up hills with an extra forty pounds on my bike. As with so many other unexpected changes in life, the loss of the old thing has cleared the way for something new, never desired or imagined, yet far more significant that what came before.

Further reflections on our my journey parenting a child with special needs can be found in Just Breathe.