We stood in the backyard and watched as the edges of March curled into ash. It was the first ceremony we had planned since our wedding almost five years before, though to use the word “planned” might be misleading. Planning our wedding involved over a year’s worth of lists, coordination, and invitations. This one sprouted spontaneously, born of the exhaustion that results from too many trips to the hospital, too much jargon, too many doctor visits, too many unknowns. It was hatched as we searched for the room to write one more medical appointment on March’s already packed calendar. “Neurology: 2:00 p.m.,” tucked into the corner of a Tuesday, and we stepped back to survey the damage. “When we finish this month,” my husband said, “we should burn it.” And so we did.
I have never been good with uncertainty. I like to anticipate all possibilities and prepare accordingly, because preparation brings the illusion of control, and thus, peace of mind. My husband is a much more laidback opposite, the needed balance to my constant fretting. The years of our relationship can be cataloged in a litany of “what if” questions, anxiously posed by me to him. “What if grad school is the wrong decision?” “What if we move back to Virginia and we can’t find jobs?” “What if the house we’re about to buy secretly has a hundred issues that weren’t revealed in the home inspection?” His answer was always the same—a shrug and then, “We’ll handle it.” For most of our relationship I have found this equal parts infuriating (how can he know!?) and comforting.
Like many pre-marriage counseling sessions, ours involved a lot of hefty conversations, and not always ones that brought out my better side. Tasked with discussing a number of hypothetical future scenarios, I saw an opening to raise the point I had repeated for years: my list-making, my thoughtful preparation, and anxious hand-wringing reflected that I took things more seriously than he did. While he (rightfully) refuted my case, I began another round of “what-if” questions intentionally designed to prove to him that I had given more thought to our future than he had. Now, years later, only one of the questions from that night remains in my memory. “What if we have a child with special needs?” I had pulled the question from those grouped on my mental “worst case” list, certain at least to give him pause, but there was only a beat before he shrugged and said, “Then we do.”
I am a longtime fan of the Harry Potter books, but it was only upon rereading them in adulthood that I was able to appreciate a quote I had sailed by on my first several rounds through the series. At the end of the fourth book, when Harry is reflecting with his friend Rubeus Hagrid on the terrible things that have happened, and the ones that are likely to come, Hagrid observes “What’s coming will come, and we’ll meet it when it does.” It took me awhile, but I finally recognized the wisdom I found so admirable in this character was the same my husband had been frustrating me with for so many years. A choice to accept what will be, rather than worry about it. A peace of mind no list could achieve, despite my best efforts.
We became the parents of a daughter with special needs almost 2 1/2 years ago, though we would be more than six months into new parenthood before we knew her diagnosis. Our daughter was happy and growing; while she was also delayed in a number of areas, we held out hope that her mellow personality was the explanation, and she would get around to rolling and sitting whenever she felt like it. We were cloaked in the innocence of first-time parents and determined not to push her to develop on our timeline instead of her own.
We were proud of our approach, until we couldn’t pretend like we were actually playing it cool any longer. We both spent weeks alternating between frenetic Googling, and trying not to let on exactly how much time we had each spent reading about the myriad causes of developmental delay. Then, on a fateful Wednesday, my husband called me at work to say he had read about cerebral palsy and he thought that was it. His voice came across the line calm and collected as I felt myself start to hyperventilate at my desk. Naming it felt like inviting out a monster that might otherwise stay hidden under the bed, but 15 seconds into the article he sent I knew he was right. I started making a list because coming up with a plan was the only coping mechanism that occured to me, as my thoughts swirled and my heart slammed in my chest. But what do you write on a list when you know nothing about having a child with special needs?
We took our concerns to our pediatrician, who was kind but not convinced from years of experience with kids who do develop at their own pace and additional frustration from dealing with parents who use the internet to diagnose their children. One new pediatrician and a visit to the neurologist later, we weren’t surprised to hear they predicted our daughter would receive an eventual diagnosis of cerebral palsy. She was social and showing other positive signs, so they hoped hers would be a mild case. We comforted ourselves with stories about all the things people with mild CP can do, and began juggling our work schedules with therapy appointments. It was a hard adjustment, but this new terrain also came with a plan. Developmental pediatrics this month, therapy every Friday. I found comfort in having a routine, and relief at finally having an answer.
Ours is not a story of graceful acceptance. A few months after those difficult but not unexpected conversations, we found ourselves in an ambulance with our daughter while she experienced her first seizure. A scan revealed a severe brain defect, schizencephaly, which usually causes cerebral palsy and epilepsy. Suddenly the best-case scenario vision we had for our daughter’s life was confronted by a harsh reality check, one that we were trying to process while sleep deprived, listening to a doctor dropping multisyllabic medical terms and repeatedly referring to our daughter as “he.”
The anxiety I expected to abate when we received her original diagnosis now morphed into an overwhelming specter looming around our daughter’s future, and the weight of the unknown felt like it would drown us. We returned home from the hospital feeling shell-shocked. While she slept, I combed the internet, desperately searching for people who had shared accounts of potty-training training kids with her diagnosis. Could it be done? Did it happen? All I could think about were the staples of everyday parenting that were going to be so much harder for us. The parenting books I had read before her birth felt like they were mocking me from our shelves: that “preparation” seemingly useless to me now. The March calendar we had stuck to the refrigerator rapidly filled with appointments for blood work, and visits to specialists. Spring had only just arrived, and already we were overwhelmed by the sheer magnitude of what it brought.
One year later, spring arrives cold and snowy, and the calendar (which will not be burned in the backyard) is filled with therapy and other medical appointments that make up our weekly rhythm. It is the life my pre-marriage self was afraid of, but this past year has taught me my husband has always been right. We’ll handle it, and learn to thrive along the way. Our daughter’s future is filled with so many unknowns, and a year ago those possibilities dominated my every thought. But experience, as they say, is the best teacher, and Hagrid was spot on.
What’s coming will come, and we’ll meet it when it does.
Guest post written by Kelly Altizer. Kelly lives in Charlottesville, Virginia, with her husband, 2-year-old daughter, and fluffy dog. Her favorite things include coffee, books, and dancing in the kitchen with her crew. You can find her on Instagram.