I’ve never had a more difficult time spotting a dinosaur. It shouldn’t have been this hard. The wall of the hospital gift shop was lined with an assortment of balloon choices. Inflated samples of each ballon option sat above the stuffed animals—a bear that read “Get well soon,” a unicorn brandishing a “Happy Birthday” banner. There had to be a dinosaur. But as soon as I read the words “Happy Birthday,” tears clouded my eyes hiding any prehistoric helium options. Today we were supposed to celebrate my daughters’ birthdays with a massive celebration at the park. While their ages at the time ranged from one to seven, their actual birthdays were only a few days apart. It just made sense. But now my three-year-old son was upstairs in the PICU and nothing made sense. I needed a dinosaur balloon now.
What I stupidly imagined as a quick visit to the ER was suddenly an ambulance transfer and a PICU admission. My son’s life was in danger. The party was canceled. Christian was in DKA, diagnosed with type 1 diabetes in triage with a fasting blood sugar of four hundred. The gift shop attendant knew desperation when she saw it and kindly pointed out the dinosaur right in front of me, gently patting me on the shoulder. It’s as if my response wasn’t completely unhinged and she wanted me to know that. She blew it up, grinned graciously, and back up the elevator I went. I walked into the room to find my son sleeping, barely conscious. He didn’t wake up for days. Truthfully, the dinosaur balloon was more for me than him. I needed something, anything to take my mind off of the haunting hospital noises. The beeps. The alarms. In that moment of debilitating grief, I felt betrayed.
Just days earlier I thought I had reached my limit. Something snapped. I’d had enough. Earlier that summer, my oldest daughter underwent a repeat spinal cord surgery related to her rare form of spina bifida. But the surgery that was supposed to give her relief from her daily seizures, loss of feeling in her toes, and return mobility in her legs disabled her instead. Her disability remains an inescapable reality. Since 2019, my daughter hasn’t emptied her bladder without a catheter. So, I was her bladder every three to four hours every day. But after months of faithfully adjusting, adapting, occasionally failing— navigating infection after infection, sepsis, and advocating for her at school, I had reached my max caregiving capacity. I needed a break. I begged God for a break. Earlier that week, my husband and I were able to go on a date to the movies for the first time in ages. We went to see Joker. And as he put on his clown makeup, encouraging himself in the mirror to “put on a happy face” with tears in his eyes, I lost it. I couldn’t put on another happy face. I didn’t have it in me.
In the voice of nurses and doctors, I felt I’d heard God’s response to my desperation—he’d given me more than I could handle. I felt angry and betrayed. It didn’t make sense. I was a faithful Christian. I vividly remember attempting to negotiate and manipulate the spiritual situation in real time. What could I do to make things change? What variable did I need to address? Pray more? Muster up a better attitude? But my mind was so foggy, my body so fatigued, the idea of adding one more thing to the holy to-do list gutted me. I had to come to terms with the reality that faith was not a formula. I couldn’t add worship music and subtract sin to get my child out of his hospital bed. And that reality left me breathless, gasping for air in my grief.
Our son was inpatient for several days, and that meant in between caring for him at the hospital, I needed to drive up GA400 to catheterize my daughter since no one else was trained. The youngest was still nursing, so in between the back and forth, I was pumping breastmilk too. Back and forth. Back and forth. I made the trek multiple times a day, that is, until Thursday morning.
I headed north on the highway to empty my daughter’s bladder before school, but this time I never made it. There was a fatality crash on the highway, and I was trapped on the asphalt in the same spot for hours. I lost it again. I watched the sun rise majestically ahead of a sea of vehicles, beautifully blinding as it reflected from every direction, while sobbing at my inability to exist in two places at once. Reality was setting in: I would need to function as a bladder for one child and a pancreas for the other—and I was already failing. My only option at that moment was to stare at that sunrise and surrender. So I did. I let go completely.
In the hospital, God’s kindness felt hidden behind the paperwork and drowned out by the medical professionals. But stranded in my car, forced to be still in the middle of my reeling, it appeared. God’s kindness met me and kept me, and it was at that moment that my grief was overshadowed by the supernatural presence of God. My grief didn’t leave, but the tenderness of God’s presence arrived. One breath at a time, God in his kindness kept saying, “Let’s do this really hard thing together. I’m not going anywhere.”
That golden sunrise is seared in my mind years later because the truth is life as a caregiving mom to four medically complex kids is regularly too much. And as I continue to pray for the hard thing to pass, I don’t want to miss the fact that the kindness of God to sustain me through suffering by his power alone is a whole miracle.
Cover image by Maria Oswalt.