When I was pregnant with my daughter Hilde, some well-intentioned people who were aware of our situation asked about our baby, using the term “compatible with life.” No combination of words hit me harder than this one. It’s a gut-punch phrase. The clinical term felt coldly detached from the sweet baby I was carrying. Not to mention, discussing whether the pregnancy would remain viable and the subsequent child live, is not conversation an expectant mother relishes.
Yet, this was not a head-in-the-sand situation. Acutely aware of our circumstances, the risks and the reality, I was well acquainted with the deep grief of where we found ourselves. Our sweet baby — wanted and loved — may well be born with considerable challenges, or worse, not survive at all. Early on, I wondered if I should hold off telling my older children, Nóra and Bence, about the pregnancy until absolutely impossible to disguise. They can’t grieve what they never knew existed, I rationalized. The weight of their potential heartbreak pressed down heavy on my own.
As the pregnancy did indeed progress, I wrestled with how to prepare for this baby. Should I buy anything? Wash onesies? Do I set up the baby’s room? It would be excruciating for all of us to dismantle a nursery rendered useless. It felt impossible to know the right thing to do. Something here was desperately incompatible with life. I couldn’t sustain dwelling in this heavy unknowing. I wouldn’t survive allowing sadness, fear and grief to prevail. So I made a decision.
We are going to live in the joy.
I couldn’t prevent grief from entering our lives, so I ceased making that the objective. When I stopped trying to avoid and mitigate potential grief, it freed me up to access joy. And not only joy, but peace with where we found ourselves. Each day I was pregnant was a gift. Despite everything, dreaming about this baby girl and anticipating her brought such joy. I gave myself permission to feel it and allowed us all to experience it because depriving us would only steal the joy; it would do nothing to change the outcome — whatever that outcome may be.
Live in the joy. What a powerful mantra it became. Living in the joy didn’t stamp out the grief of our situation, nor did it mean I was stuffing it down. Living in the joy meant I allowed myself to acknowledge and feel grief, but I didn’t dwell there only. I didn’t deny myself joy because doing so wasn’t compatible with life for me.
So during those months, amid frequent perinatal appointments, ultrasounds, non-stress tests, and prenatal assessments, I prepared to welcome Hilde. I hired a birth photographer. What previously seemed an extravagance, in this case felt like necessity. I forked over what felt like an exorbitant amount of money, so that we would have photos, if nothing else. It seems devastating, maybe morbid, to have had to think like this. Yet, when I look back on my pregnancy with Hilde, despite what we were going through, I didn’t feel crushed by dread or anxiety. Fear and worry, while not completely absent, were brief, infrequent, and manageable visitors. Overwhelmingly, I felt happy. As I awaited this baby and whatever was to come, there was ease.
Hilde blessed us with her arrival in August of 2019. Her birth kicked off a new leg in our journey. Hilde was indeed born with challenges. She gained her first diagnosis several weeks after birth. She has significant disabilities. We’ve battled through some tough, scary stages so far. We know it’s likely more lie ahead. On this road, we’ve come to know that grief is an ever-present feature of the landscape we are navigating.
But, so is joy. You see, I’ve found that grief and joy do not cancel each other out. Sometimes they don’t even take turns. They can —and frequently do— exist side by side, at the very same time. Together, grief and joy are more than just compatible with life. They are life. And I choose to live the hell out of it.