He is fourteen now. It is surreal to me, this knowledge. That he is fourteen years old in the shadow of the long-ago unspoken fear that he might not even see fourteen days is almost too much to consider. If I think about it for long, my breath grows short and my heart skips and stumbles.
He is skinny, handsome, quiet, sensitive. He’s a pleaser, a conflict-avoider, a fly-under-the-radar ninja, a bowler, an actor. He exasperates me. He challenges me. He lifts me.
He reminds me.
I’ve written his NICU story many times in countless forms.
But I’d never spoken it.
Last Thursday evening at “Listen To Your Mother,” I stood in front of 300 people who had gathered at the Indiana Historical Society to hear our Mama stories, to share in our universal motherhood experience.
To speak his story, to let it loose from my lips, to give voice to his triumph was a new awakening.
I forget momentarily, too often, when I promised — I swore — I never would. When you’re in the heat of battle, you offer up whatever you can. I promise, God. I promise. I promise. I will not fail him, I will not fail You. I will not forget. Just give me this, please. Just this.
And then life happens and laundry needs to be folded and school IDs are forgotten and dinner dishes need to be washed and basketball practices are scheduled and you fall back into the frantic pace of daily family existence.
Even though I swore I’d never forget, I swore I’d never stop appreciating.
Still, in the day-to-day messiness of life, the promises I made get lost in the shuffle, get folded up and tucked into the bottom of a backpack. The vows to appreciate the wonder of each moment, to honor and love and celebrate this motherhood gift I’ve been given fall by the wayside.
Not intentionally, just inevitably.
I don’t truly forget — I’ll never in a million years forget those hours, those days, those excruciating and heartbreaking moments — but sometimes I need to be reminded to slow down, to turn off the computer, to put away my phone, to hold these babies tightly.
Because they are no longer babies, and they no longer want to be held. The oldest, in fact, will spread his wings and fly in two short years. The youngest, in just five beyond that.
It hardly seems possible.
But it is. It is more than possible. It is real.
This crazy dance of life happens far too quickly. It moves at a blistering pace, and I am left with my head spinning and my equilibrium unsettled.
Today. Today, I promise to stop and breathe and appreciate and give thanks… and remember.
This is Gus’s story, the one with the happy ending. The one that shaped and molded us into the reluctant and unprepared parents of a critically ill baby; of a sunny, questioning toddler who wondered why his baby brother wasn’t coming home as expected. This story is the one we will continue to sing as we celebrate the joy and heartbreak of this magical parenting ride.
We may forget in the moment, but we never, ever really forget.
Today. Today, I remember. Today, I honor those who have shared this journey in whatever form, those who didn’t get the happy ending or the trip they’d planned, those whose arms are empty and whose hearts are broken beyond real repair, those who continue to fight the battle that we miraculously were pardoned from fourteen years ago.
Today, I thank those who carried us through those darkest of days, who housed us and held us and comforted and kept us. Today I honor those who loved us, who cried with us, who wiped away our tears, who scrubbed their hands and donned their protective gowns to gather into the sacred circle of our fragile family fourteen unfathomably short years ago.
Today, I wrap my arms around those who are still a part of our lives, who have chosen to love us, to love our kids, to travel this one side-by-side, no matter how bumpy or unpredictable the road might be.
Today, I celebrate and honor and hold these gifts tightly. I do remember, God. I do.
And I am grateful.
* * * * *
With a mop of red curls leading the charge, Augustus Charles Willis made his way into the world on a bitterly cold February morning. He arrived via c-section and was awarded an APGAR score of nine. (Nine!) I imagined the judges holding up their numbered signs.
And then his oxygen saturation levels began to drop. Less than 24 hours after his championship performance, he was rushed by ambulance to St. Vincent’s Neonatal Intensive Care Unit.
“Where my baby?” asked his two-year-old brother, Sam. “Where my baby Gus?” Chris and I did not have a good answer. Our baby Gus was in a strange and foreign land, one that we would reluctantly adopt as our new home.
“He’s with the good doctors,” I explained to Sam as I held him closely, felt the butterfly beating of his small, strong heart. “They’re making him better.”
Moving through the NICU was like swimming in snow boots. Travel was slow and breathing did not come easily. The dark, hushed silence of a room full of critically ill babies teetering precariously between life and death was surreal at best, tragic and terrifying at worst.
And then there was Gus. Our plump, seven-pound elf, on his back, eyes closed, still and silent, enveloped by tubes, and sleeping with pharmaceutical support to the sounds of beeping machines. His blood-stained chest vibrated with frightening speeds as the oscillating ventilator delivered tiny puffs of air to his weak, damaged lungs. If you looked beyond the bandages and the wires – and I could not look beyond the bandages and wires – he was perfect. His fingers and toes were long and lean, his legs chubby.
“What went wrong?” I asked Chris.
“What went wrong?” we asked the neonatologists.
And even they couldn’t give us a solid answer. We’d often see them standing at his bedside, hands on hips, shaking their heads. He was a mystery, our boy. A medical conundrum.
During the next five weeks, our lives turned upside down. We maintained a bedside vigil with Gus until the angel nurses forced us to sleep. Often, our cell phones would ring in the middle of the night and we were called back with the news that Gus might not survive until morning. It was one endless, grueling week before Gus’s illness was given a name: pseudomonas pneumonia. The next four weeks became the most valiant fight of Gus’s life as his medications were changed, his ventilator settings adjusted, his chest x-rays examined again and again. Surgery? ECMO? We never knew what would come next.
But tears? They came easily and often for us, and we named them Fear, Anger, Disbelief, Confusion, Pain, Fatigue, Helplessness, and sometimes, very briefly, Happiness. When Dr. Templeton told us that Gus had made a slight improvement, we rejoiced. It was often one step forward and two steps back, but we continued the climb. We tightened up our hiking boots and double-checked our carabiners.
The day Gus broke through his medically-induced coma, the day he finally opened his soulful blue eyes, the day he cried his heartbreakingly silent cry (because the intubation tube ran directly through his vocal cords), was the day we reached the summit.
“We see my baby Gus?” Sam asked as we drove him to the hospital to meet his brother.
“Yes, Sam,” we cried happily, “we get to see baby Gus.”
When I watch twelve-year-old Gus running today, with his awkward, gangly gait and his arms flailing wildly; when I read his insightful journal entries; when he smiles his quirky, crooked half-smile; when he lugs his baritone around like a grossly distorted appendage; I cannot imagine a world in which God would have chosen to keep this particular blessing from the rest of us. He’s going to be a teenager this year (Thirteen!).
As a baby, he bravely battled multiple bouts of pneumonia; worked his way through physical, occupational, and speech therapy; and sat patiently through countless breathing treatments. When he was nine (Nine!), he proudly began showing his scars to his friends. “This is where they put the tubes to fix my lungs,” he explained, lifting his shirt for all to see. “This is where they sewed another tube into my chest to give me food and medicine.”
Gus was our teacher of All Things NICU: we learned about PIP and PEEP ventilator settings, transient tachypnea of the newborn (TTN), infant respiratory distress syndrome (IRDS), pulmonary interstitial emphysema (PIE), bronchopulmonary dysplasia (BPD), central lines, steroid therapy, versed and vecuronium, and the relentless beast known in medical circles as pseudomonas. But most importantly, Gus’s brush with death taught us, quite simply, how to live. If there is a lesson to be learned from our experience, it is that life is fragile and fleeting and precious; and never, ever guaranteed.
Thanks, Professor Gus.