As fall approaches, I find myself flooded with memories of Jack’s illness and hospital stay last autumn. I wrote this before I had a blog in December of 2007…
Jack looked like a hostage while being wheeled on a stretcher into the back doors of the ambulance. “Look,” I said lamely to my precious, barely five years old and utterly terrified son as the driver shut the windowed doors, “we’ll be able to see out the window and watch where we’re going.” Quietly, I corrected myself. “I mean I guess we’ll be able to see where we’ve been…”
I sat down beside him on the bench seat next to the stretcher, buckled my seat belt and began waiting for this two and a half hour journey to Albuquerque, through snaking mountain canyons and across high desert mesas to be over. Propped on pillows, Jack stared angrily out the window. His was not a childlike, tantrum kind of anger but more like that of a trapped animal; still and primal. I searched his eyes for evidence of my playful and curious son and recognized only his will and his courage.
My head and heart were throbbing. I was certain I could feel the weight of every mother who had ever watched her child suffer and who had ever worried bodily, with her skin, her jaw, her teeth… Here we were again. The last time he and I had gone through this together, Jack was still inside my uterus. That time we drove in a car. A routine ultrasound had revealed a cyst on his umbilical cord, blocking his blood and nutrient supply, putting him and his identical twin brother at risk. I never knew until this time that riding in the back of an ambulance is like sitting in the back of a pick-up truck.
“I’m here with you. It’s going to be alright,” I said, laying my hand on him, every time he grimaced or cried out in pain, as he did over every bump in the road across 150 miles, increasingly more so as the morphine and sedative he had received earlier before his third cat scan continued to wear off. I whispered these words to him countless times, and every time I felt like I was lying. Yes, I was with him and I would be with him through whatever was to come but I didn’t know that it was going to be alright. Enough had already happened, seemingly in an instant, that I could peer into the crack between everything being alright and nothing ever being alright again. I thought of my son Liam, Jack’s twin brother, being driven in our car by my husband Oban somewhere behind us in the vastness of New Mexico, as the October sun dipped behind the mountains. That very day, Liam had watched me sob so uncontrollably on the phone with my sister (shortly after a nasogastric tube had been incorrectly inserted in Jack) while driving him to get his lunch that my sister had to force me to pull over in a church parking lot, as Liam sat helplessly strapped in his car seat.
I thought about how, just a couple of days before, my pregnant friend Erin had sent out a group e-mail, requesting a recommendation for a book that she could enjoy in her “fragile, emotional state.” She had attempted reading Interpreter of Maladies, a story about the disintegration of a marriage following the birth of a stillborn son, and couldn’t stop crying for hours. I e-mailed her back and explained that when my twins were two I had made the similar mistake of reading Angela’s Ashes, and couldn’t get past the point when a toddler boy dies and his twin brother spends months looking out the window, waiting for his return. “ I mean, come on!” is what I wrote in my e-mail.
And here I found I myself standing ironically on the precipice, trying to avoid staring into that crack, that fissure in the ground that had seemed so impenetrable, that could remain a tiny fracture or could open more and swallow us all whole.
It had all begun so commonly. I had a brief and insignificant stomach virus. Liam seemed to experience it even more mildly, and then a couple of days later, Jack came down with it. After a few minor bouts of diarrhea in twenty-four hours, it was over. A day later he went back to preschool. That afternoon, he began to complain of stomach cramps and acting strangely listless. The next day, I watched crippling pain rise up in him from his abdomen to this chest. It came in waves that reminded me of labor but it looked like he was having a heart attack. My typically stoic son, worried that any admission of illness might mean medicine or a trip to the doctor, looked up at me and said, “Mama, I think I’m going to die.”
They had ruled out the appendix. Fluid continued to build in his abdomen. He could not eat or drink. His CRP, a non-specific measure of infection in the body determined by a blood test, was extraordinarily high. Intravenous morphine didn’t seem to take the edge off his pain. After a night and day of invasive tests at our local hospital, the doctors were sending us to a university children’s hospital because they couldn’t figure out what was happening to Jack.
Just as when we had been sent from our small town of Taos to an Albuquerque hospital with a neonatal intensive care unit five years earlier, Liam was again along for the journey and though they no longer shared a placenta, I knew his future was still inextricably tied to his brother’s. The night and day Jack had already spent in the hospital was the longest they had ever been apart since their month spent as preemie infants in the neonatal intensive care unit.
By the time we reached Albuquerque, I was kneeling on the floor of the ambulance holding Jack. When the driver lifted Jack’s skinny body from the stretcher into a hospital bed, he wiped tears from his bloodshot eyes. “You and your brother come visit us when you’re all better and we’ll take you for a ride, OK?” he said.
We spent six sleepless days and nights in the hospital. Liam slept at a nearby hotel with Oban and my mother, who had flown in from New York. I slept on a chair or curled around Jack in his bed, trying not to tangle his IV line. Between his pain and the constant waking by the nurses to draw blood from his impossibly tiny veins, nights became a slow kind of torture. By the third day, Jack had the strength to walk a few steps. We pulled him in a red wagon to the toy room. Liam, frustrated by Jack’s exhaustion, persistently tried to engage him with whoopee cushions and ice pops. On the fourth day Jack was isolated for contact precautions while his blood was tested for viral hepatitis. Little by little, his blood work began to normalize and his team of doctors cautiously surmised that he had fallen prey to an enterovirus that had impacted his gallbladder, pancreas, and liver, causing those organs to leak the fluid that had collected in his abdomen. He had a low grade fever for three days as the virus made its exit. I waited fearfully to see if the same symptoms would appear in Liam next. They never did.
We carried Jack, still too weak to walk, around the Albuquerque plaza in a pirate costume we bought at the nearest K-Mart for Halloween trick-or-treating on his first afternoon out of the hospital. At the doctors’ request, we stayed in a motel near the hospital for two more days – and then drove back home for a couple more weeks of recovery. At first embarrassed by his illness, Jack eventually came to embrace his heroic status at school and seemed to exude a newfound quiet confidence. He was eager to laugh and play. Liam, who had thrived during Jack’s hospital stay, fell apart. He was volatile, clingy, and plagued by nightmares. After watching Ratatouille, he cried,“I don’t like that movie! That mouse lost his family!”
In the span of the next month, our family endured an onslaught of medical annoyances; Liam had a severe case of croup, I sliced my thumb open with a kitchen knife and needed six stitches, my elderly grandfather was hospitalized for dehydration. Through talking about each of these more manageable experiences, and with the help of an art therapist, Liam seemed to begin to work through the emotions he felt surrounding Jack’s hospitalization.
Then, the three-and-a-half year old brother of one of Jack’s and Liam’s classmate, who had begun stumbling, feeling dizzy and exhibiting unusual behavior, was taken for a cat scan. He was ultimately, dreadfully, diagnosed with an inoperable tumor that had invaded his brain stem, at the same children’s hospital we had so recently left. Liam came home from school and told me, “Luna says Pablo’s dying because his brain is growing too fast. Luna says he’ll be in the hospital for infinity days.”
I had to catch my breath. I could no more guard Liam from this reality than I could have shielded Jack from the virus as it twisted through his body, or Pablo from his cancer. As much as I yearned to protect what I saw as the sacred bond between my young twin sons, life was already teaching Liam that not everyone is made better at the hospital and that his worst fears for our our family had been, in fact, possible. Yet somehow that sober confirmation seemed to validate Liam’s experience, and in the end, reminded me that deep love cannot exist without deep courage, twin qualities that together create something akin to grace.