The questions I ask myself about my children
All children have to be deceived if they are to grow up without trauma.
- Kazuo Ishiguro, Never Let Me Go
“Are you alone?” the nurse asked as she escorted us to the examination room.
It was an odd question. After all, my younger daughter and I had been the only ones waiting outside the single, nondescript door marked “Pediatric Neurology” tucked away in a corner on the fourth floor of the hospital that spanned a city block. My daughter had repeatedly lunged for Highlights, which lay just out of her grasp among the magazines and books scattered across the table in the reception area, as I anxiously fidgeted in my seat.
“Yes,” I answered. Yes, I am alone. Do you know why? My wife, Linda, would have wanted to be here with us. But that’s not possible. So here I am, just me, hoping for the best.
I had been dreading this doctor’s visit in particular, afraid that my daughter’s neurologist would be the one to definitively confirm what felt like an open secret among the therapists working with her. The developmental delays were too noticeable now that she was a year old, no longer obscured by milestones that came in rapid succession and instead exposed by ones that were increasingly further apart. The daily exercises I did with her had become my futile attempts to will her injury away, forgetting that it lay within her mind, beyond my reach.
Grappling with the uncertainty of a child’s long-term prognosis is maybe the hardest aspect of caring for one with a disability.
After the exam, the doctor walked over to the computer to glance at her notes, took a quick breath, and said, “She meets the criteria for a diagnosis of cerebral palsy. I’m sorry,” the matter-of-fact statement articulated both politely and authoritatively. She went on to explain that there was a reasonable chance that my daughter would never be able to walk independently.
I held my daughter close on the way back to the car; once inside, I wept, my hands folded over the steering wheel. I felt loss for my daughter, one to which she was oblivious. If only Linda were here, I thought to myself, no setback would feel too great. We would have helped each other through this. But I was, as the nurse had pointed out, alone.
Suddenly my daughter, in her car seat directly behind me, giggled. Here she was, unbothered and content with all she knew. And in that moment, I felt something else that surprised me: a resolve to never let her condition define how I think of her nor what I believe she is capable of achieving. A determination to not let her see me cry again in a way that pitied her. The day of her diagnosis unexpectedly marked a turning point for me, one where I began to focus more on what I could control for her rather than what I could not.
Several months later, I was reminded of that day when I happened across a prominent essay called “Welcome to Holland,” penned more than 30 years ago by the author Emily Perl Kingsley (who was also a longtime writer for Sesame Street) about the experience of raising a child with a disability:
By Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you never would have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…and you begin to notice Holland has windmills…and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very, very significant loss.
But…if you spend your life mourning the fact that you didn’t get to go to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.
I think it is a poignant, succinct, and apt analogy that distills how it feels to care for a child with ongoing medical needs. I have come to see my daughter through the lens of what she can do in spite of her condition, not what she cannot do because of it. I have come to realize that a life in Holland can indeed be a fulfilling one for her and for us.
Still, it must be said that being diverted to Holland is unfair. It is unreasonable. Being forced to live there is a burden more than any parent or child should be required to bear. But unlike an unexpected flight change, there is no customer service to file a complaint with, there is no recourse. All there is to do is concede - against life itself.
I often contemplate this essay not just with regards to my daughter’s condition but also with respect to my broader life situation as a grieving spouse and single parent; after all, the analogy can be extrapolated to any unexpected fracture in life that propels us on a different trajectory than the one we had prepared. In particular, I find myself giving a great deal of thought to this question: what is it like for a child to grow up in Holland?
We can never fully understand life as someone else experiences it, even if the “someone else” is our own child.
In moments that are the “slices of life,” I gaze at my daughters and see two young girls who are enjoying Holland, a testament to their resilience or, perhaps, their innocence - it is the world as they know it. And yet I know that it will not always be so simple.
My elder daughter asks me, “Why did mommy’s body stop working?” I pause, grasping for an answer that does not exist. She tells me she wants to go to the cemetery to visit Linda; there is no fear of that place, just yearning. Her grief and emotional injury are an enigma to me, still unfolding or maybe yet to unfold, a consequence of losing her mom at an age where she was old enough to remember that Linda was a person in her life yet too young to comprehend what it means.
My younger daughter recognizes Linda in photos and exclaims “Mama!” as if she is a character in a story, one in her life she will never get to meet. Will my daughter’s birthdays be a celebration of her remarkable life or a reminder of a person unknown?
Soon, the questions from their friends, maybe bullying even, will come. Why don’t you have a mommy? Why do you have to wear that funny-looking brace? After all, kids can be as ruthless as they are candid. The world will look less blameless to my girls, and they will shed their ignorance of matters of life and death far sooner than anyone should have to. What happens when everyone they know tells them how great Italy is?
These are rhetorical questions. For now.
My hope is that one day my daughters will each find a way to their own Italy, whatever or wherever that may be, as I once did, with Linda. In the meantime, we are learning that what is important is that we are together, here, in Holland. We are still settling in.