We entered the oddly shaped room, laid out like a letter “L” at the end of a hallway, away from nurses and beeping and bustle. Just the baby was there, on his belly in an industrial-looking crib, about one year old, and his mom, no roommate. I remember thinking, “I hope we don’t have a roommate either,” but I didn’t voice this worry. I was almost unable to speak, the uncertainty of what lay ahead choking me and stealing my voice. My husband and I were weighed down by several overnight bags, full of supplies we thought we might need.
How do you prepare for what is completely unknown?
You pack leggings, and comfy tees, and bras that you think you can bear to wear overnight because going bra-less might be against the children’s hospital policy. Like submerging into a twilight zone, we entered the hospital that night with no idea how long it would be until we would emerge. Time would stand still for us while the rest of the world got on with their business. The vague odor of cafeteria food mixed with remnants of that rubbery dentist-like smell of the anesthesia mask hung in the air. These fluorescent lights, this unwelcome scent would be our home until our newborn son was well enough to leave.
The one year old baby boy rustled the crib sheet, seemingly content and healthy. Congenital heart disease mostly hides itself from outsiders though the puffiness of his face gave him away to me. I knew that the first three months of his life had been harrowing, so much so that his family of mom, dad and three big sisters had uprooted their lives and moved from far away to be together near the hospital. The idea of three months of hospital living and the implications of what that would mean about my own about-to-be-born son’s heart condition terrified me to the core.
The baby’s mom, Lisa, stepped toward us, emerging from under those lights. She was tall and thin with long hair streaming down her back. I wondered how she looked so good, so put together while living in this place. She had big, beautiful eyes that held the warmth I had been searching for without knowing how desperately I needed it. She seemed bathed in the light; while it reflected harshly on us, Lisa seemed to positively glow. She was happy to see us. We the weary travelers, having lived 500 miles away from home for the better part of two weeks, crashing in a friend’s apartment before moving into hospital housing. This was our journey to give our own son the best chance at life.
Lisa had walked this road and was ahead of us, but not so far away that she couldn’t recognize the fear, see the terror in our eyes that seeped out of our skin. She knew we were carrying the weight of the unknown, equivalent to the weight of the many bags aching our shoulders, but unseen. She had invited us to stop by for a quick visit on our way to Labor and Delivery. I was 39 weeks pregnant and would be induced in less than an hour.
Though it was my first time meeting Lisa in person, we had been connected by email throughout the second half of my pregnancy following a prenatal diagnosis of severe congenital heart disease in my unborn son at 18 weeks. She was introduced to me through the magic of the heart community; dedicated moms of children with congenital heart disease making phone calls and writing emails to strangers who had just received news that turned their world upside down. Having the experience of receiving that news themselves, these were the only moms that had a notion of what I was experiencing. I needed them and I clung to their advice as I tried to navigate being thrown into a new, foreign world. Lisa had been nothing short of a lifeline.
Back in her son’s pediatric hospital room on the 8th floor, Lisa asked us to join hands and pray. I vaguely recalled that maybe her husband was a preacher or minister. Praying together and out loud outside of the confines of a church or temple wasn’t exactly in our wheelhouse, my husband and I. We weren’t even from the same religious background as each other, a topic that had been long discussed in our marriage. But we didn’t hesitate for a moment. I would have done whatever was asked of me in that moment so long as it was in the name of delivering our baby safely into the world. We set down the heavy bags and clasped hands, my husband’s clammy and Lisa’s warm and dry. I closed my eyes.
Slowing down during this pregnancy had been a monumental task. Slowing down meant listening to the thoughts in my head and those thoughts were dark and scary. A woman’s body should produce a healthy baby and mine had failed. I didn’t have what it takes to take care of a gravely ill child, I could barely figure out how to parent my young daughter. And perhaps the most haunting: I did not know how I would survive if he did not. Lucky for me as the pregnancy progressed, it became medicalized and I didn’t have much time to think. I was working full time, traveling across the city twice a week to get hooked up the heart rate monitor, seeing a pediatric cardiologist routinely, commuting, and trying to get my 20 month old to take a nap on the weekends.
When I closed my eyes in that funny shaped hospital room in the presence of Lisa something shifted. The frenetic energy I had been carrying left my body. A calming presence washed over me and I felt the deepest moment of peace. I sensed with certainty that I was going to make it through whatever came next for us. It was a knowing that had been there all along, accompanied by gritted teeth and curled lips, white-knuckling it. In Lisa’s presence I knew I was going to make it through with grace, that we would be cared for, and that somehow, I would be ok.
I cannot recall even one word she spoke in that tiny prayer circle, but the energy and love she poured into my brokenness has stuck with me. It’s been almost a decade since that fateful night and I can still feel the radiance of this woman and the impact she had on our lives.
Isn’t this what we all need in our times of deepest despair? Someone to see your pain, truly see it as their own. To stand up for you, ease your burden, and hold all of your baggage even for just a moment.
Our baby boy was born in a crowded room just 12 hours after that encounter. By some miracle, he left the hospital one week later, after a procedure on the first day of his life and without undergoing the open heart surgery we so worried about. My son is now seven years old and has spent significantly fewer nights in the hospital than Lisa’s little boy had at one year old.
I think about her often and the courage it took to stand beside us that night, with her own baby next to us, his future very uncertain. In retrospect, it was such a small gesture and yet the impact it had on us so profound. I try to channel Lisa as I go deep with people into the darkness of their stories. I remind myself that I don’t need grand gestures to make a difference. It’s more important to simply show up and offer what I already have to give.