From surgery to serenity
A Story of Faith written by Mackenzie Nielsen
Photographed by Kati Ellis
October 2023
My dark night of the soul happened literally in the dead of night. I held my screaming baby and sat, rocked, swayed, walked, and bounced for hours as my infant wailed and writhed in discomfort, subconsciously reliving the trauma of the first six months of his life.
My son was born with only half a heart – a single pumping chamber – that required a series of surgeries in his first months of life. While the doctors are pleased with my son’s progress during the two-year lull between rounds of surgeries, my husband and I face the unseen horrors of the aftermath, often in the dark of night. Even after he had fully recovered from his latest surgery, for ten consecutive months my son woke up every fifteen minutes in the grip of night terrors, screaming and inconsolable though no longer in physical pain. It was these moments – exhausted beyond reason, emotionally spent, and each night hopeful, even desperate, for relief that did not come – that brought me abruptly to the limits of my faith.
My own suffering made sense; I know we’re on earth to be tested. My faith had remained steadfast through a challenging 18-month service mission for my church in Ukraine, a painful divorce, and a miscarriage. But now, watching my innocent child endure such hardship — fighting for his life and skirting perilously close to the edge in the hospital, and now emotionally scarred beyond what I or any specialist could do to help — felt wrong. There were no nurses or doctors to respond to these ailments. This unique variety of suffering couldn’t be treated with a pill or a procedure. Indeed, there didn’t seem to be any cure at all. Even if I couldn’t find a respite, why couldn’t some degree of relief come for my baby?
Even a year later, I still felt shattered. People would hear that the initial surgeries were behind us and rejoice, “That’s so nice that you have a break!” What they didn’t realize was that we still weren’t ok. Some of the memories that haunt me most don’t come from the hospital, but rather from the lengthy string of solitary months at home when it was up to my husband and me to care for a broken, traumatized, sickly little baby in medically forced isolation. I wondered if we would ever recover.
We don’t often talk about the psychological trauma caused in the name of life saving medical intervention. To be sure, my son needed the surgeries to live. I feel profoundly grateful that he was able to receive them from skilled professionals; without them, he would not be here. Still, that gratitude and appreciation sit alongside deep battle wounds carried by each member of our family.
At my darkest moments, I felt hollow and emotionally raw. I hardly recognized myself. I was desperate for that season to end and for life to resume a semblance of normalcy. I had thought that having a baby would be a joyful experience, yet all I could see was suffering.
As I cradled my infant one night, he finally fell asleep in my arms. Suddenly, from nowhere, I was seized by a love for him that was so visceral I couldn’t bear to set him down. Exhausted beyond reason, I delayed sleep so I could savor this beautiful moment: the stillness of the night, the gentle rhythm of his breathing, his tiny body huddled against me in a rare state of repose. I wanted to tear open the sky and funnel all the love in the universe into his fragile frame.
With a flash of clarity, I knew that God loved me with the same intensity I felt for my delicate baby. I knew that he likewise wanted to protect me from suffering, but just as I had not shielded my son from the anguish of open heart surgery, God likewise might not shield us from pain that would precipitate necessary and even lifesaving growth. My son’s emotional distress did not disappear, nor did sleep come more readily thereafter, but I was bolstered by a trace of understanding that God can love us — his children — and let us suffer. Both of these things can be true.
While we are by no means out of the woods regarding my son’s medical challenges, I have learned two valuable lessons from my experience thus far. The first is that when life carries me beyond my own physical, emotional, or psychological limits, the Lord becomes my strength. I still don’t know how I was able to function at work each day during those long, sleepless, harrowing months, or how I was able to help multiple family members with major life transitions. The Lord supplied just enough energy for me to make it through each day, and not an ounce more. But it was enough.
The second lesson is that all of my pleading cannot change the Lord’s timing. With two more surgeries ahead, I continue to trust that the Lord knows what He is doing and that He can accomplish all for my eternal good even – and especially – though I might not understand how He can possibly do it. Isaiah said it best: "But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint" (Isaiah 40:31).
Gradually, my son’s sleep has improved. Of equal importance, he is developing into a happy, curious, and emotionally resilient boy. His ebullient personality infuses our lives with a joy that heals our lingering wounds. And I press forward carrying the conviction that I can do precious little on my own, but in the Lord, I can do all things (Philippians 4:13).
