What I Learned From Parents Of Sick Children

No matter what you wish for as a parent, things will never go as planned.

Years before I became a parent or had even a serious partner and feasible co-parent, I decided my future child had to be a girl. I couldn’t envision myself cradling, bathing, and walking alongside anyone but the daughter I pictured in progressive detail.

I held onto my requirement for a good 10 years. I had a vague idea that when the moment of conception was near, I could put in my order, not unlike the ones I made in restaurants and coffee shops—and then gradually, once my daughter was here, help coax her into the person that I’d dreamt about. Like having my heart set on a perfect bowl of chocolate ice cream, my order would be guided by my history and a lot of presumptions about what would bring me joy and what I assumed could not.

As I edged closer to actual parenthood, I began hearing about others’ wishes.

Parents-to-be wanted calm babies; babies who didn’t fuss too much or wail too loudly. Champion sleeper babies. Perfectly healthy babies. Easy babies. Beautiful babies. Babies who were bright; brighter-than-average. As I became aware of these ideals, I added them to my growing list.

Then, when I was 32, a few years after marrying a wonderful man and feasible co-parent, I began an internship at a local children’s hospital. Soon, I was spending my days with seriously ill children, some of whom were dying. When I walked into those rooms, I had the sensation that I’d put on a heavy, invisible coat, one made of the lead dentists use during X-rays. I struggled to breathe under that weight and thought I might die of exhaustion if I had to wear it all the time. No heart could bear such pressure for too long.

But these parents weren’t dying. They were tending to their handsome 16-year-old sons who were on life support after an awful, sudden case of the flu. They were doing the impossible job of soothing their pale, moon-faced toddler in the midst of a bone marrow transplant, or helping prepare their child for an arm amputation first thing the next morning. Parents were showing up, day after day, night after night, living in the midst of a nightmare unfolding, painting the nails of their adolescent, whose lungs were failing from cystic fibrosis.

Despite a rash of negative pregnancy tests around the start of my internship, my instincts told me that I was having a baby, and that it was a boy. The ultrasound that confirmed that it was a boy almost seemed like an unnecessary formality. Though ecstatic about my pregnancy, prior to starting my work at the hospital, I knew I would have been disappointed about carrying a boy, my picture of the future drifting away into some place I had never allowed myself to go. But after my internship was underway, my perceptions about parenting started to shift; I found an antidote to my long-held, fixed ideas in those hospital rooms and hallways.

There, I was a witness to a new kind of pain. The sources of it seemed to move out in all directions, blanketing the world like a snowy landscape: vast, with no corners. Illness, death, disfigurement, mental illness, addiction, learning disabilities, and every kind of delay and slow start were all possible. And there were the simple, everyday struggles, too—no parent lived in this world unscathed.

In a building where children in various states of suffering were stacked four flights high, there was no turning away from it: Parents’ wants and wishes—including for the most primal wish of all, health—had no bearing on the children they might have.

Suddenly, the word “vulnerable” seemed specifically created for parents of the world. The moment you decided to plunge in, you effectively surrendered: expectations, control, life as you knew it. My dream of a perfect baby girl receded as I willed myself to acknowledge the full range of what might be. My husband Andy and I culled through the documentary section of our local library, seeking clues about how parents of children with rare life-limiting genetic disorders, Down Syndrome, and profound mental illness learned to live each day.

I started seeing my own fixed desires for my someday child for what they really had been: a means of self-protection. Give me a daughter, I thought, and I’ll be safeguarded from the hard parts of my own family story. Infuse that daughter with creativity, and I’ll know what to do. Spare me from the unimaginable pain of her being ill, or disabled, and I can handle anything else. 

The parents in the hospital were at various points along the continuum of Things Not Going As Planned, but some were on the least desirable end of that line. And yet, facing futures that most would consider worst case scenarios, many expressed gratitude for their children and their journeys together, even in states of total exhaustion, even in moments of staggering emotional pain.

Before meeting those people, I’d grown comfortable with a narrow vision of my future. I had been naive to how vulnerable parenting would make me, and how life, ever after, would be about adapting: to how much love I would feel, to heartache, to all that I never could have predicted. My new, singular wish for my child was as wide as it could be—to try, mightily, to grow to meet him.

Addie Hahn parents, writes and grows an abundance of kale and peonies in Portland, Oregon. She holds a B.A. in English and certification in Child Life.

Related Links:

Posted in Family and , ,