Everything seems peaceful and under control. We sit on the floor of our apartment, wooden blocks and toy trucks passing between us as we create projects guided by Aaron’s imagination. A fanciful, even abstract, version of the George Washington Bridge rises from the wooden floor in tribute to the most recognizable landmark of our neighborhood. Boats float in a make-believe river of aluminum foil, a stand-in for the mighty Hudson. Now four years old, he guides his trucks through convoluted highways with a repertoire of gurgles, honks, motor noises, and the extravagant gestures of a traffic cop. Being with him is all-absorbing and addictive. I am willingly drawn in, wanting more and more.
Playing with Aaron satisfies a basic feeling of safety and comfort within me in a way I haven’t experienced before. He is part of me. My heartbeat slows, my breathing eases, and I sit cross-legged on the floor without discomfort. At first, it takes effort to put aside thoughts of work, but once banished, they remain in a sealed box. Together we create an environment in which both of us are growing. Aaron trusts me completely, and I flourish at the center of the world we fashion.
One nagging thought disturbs our Eden. Aaron has a hole in his heart, detected at twelve weeks of age. The time has come for the reparative heart operation. My own heart has vibrated nervously every day since his diagnosis.
My wife Kathleen and I are both doctors and have tried to prepare Aaron for what is to come. We tour the children’s wing of the hospital and meet the staff, but he doesn’t grasp the connection with his own future. Nevertheless, the challenge of the operation is enormous for Kathleen and me. I think about it while I watch my son’s mind make connections within his safe world. It is carefully controlled, largely limited to family and friends, children in his preschool, and people we meet on our walks through the neighborhood.
Now his surgery will propel us to foreign surroundings, powerful medications, and people in whose expertise and goodwill I have no option but to trust. Our quiet life will be upended, and uncertainty will reign. And after we pass the perils of the hospital, can I guide him back to a normal life?
Kathleen and I sit holding Aaron in the waiting room outside the OR. We have brought his favorite books, The Little Old Man Who Could Not Read and Andy and the Lion. He has most of the words memorized and recites them as we read aloud. While Aaron points out favorite illustrations, Kathleen and I wait nervously for the anesthesiologist to appear. Many thoughts pass through my mind. In four short years, Aaron has become the central being in our lives. We wake together, sleep together, play together, grow together.
Finally, the anesthesiologist emerges from a side door to the OR. He shows Aaron a mask and asks invitingly, “Would you like to be an airplane pilot?”
Aaron replies, “Yes,” with his innocent voice and guileless smile as he dons the mask. It’s a necessary ruse, but I hate that he is being tricked.
Before transferring Aaron to the anesthesiologist, I almost pull back. Our perfect child is entering a world of medical hazard. Complications of the operation are a small risk of death, a small risk of stroke, a small risk of brain damage. The difference between small and none is enormous. I know that the hole in our son’s heart will be repaired, but will he be the same boy? How will our family be changed by all this?
As Kathleen and I walk the long block around the hospital, hoping to distract our thoughts from the surgery, we recount stories. Our first trips to Fort Tryon Park, walks by the Hudson River, visits to the bus terminal, our first hike over the GW bridge with Aaron perched on my shoulders, hours of play in the park sandbox.
The post-op beeper finally goes off, its unrecognizable tune summoning us back to the hospital. We are ushered into the recovery room. Aaron is the only patient. Wires and tubes form train tracks across his body, traveling to monitors flashing garish colors and beeping to the regular cadence that supports life. The body looks like Aaron, but he is unconscious, breathing deeply, oblivious. Kathleen and I silently ask each other, Is this our son?
I knew it would be like this, but still my emotional response takes me aback. I wonder, How could caring parents allow this to happen to their child?
We wait for Aaron to wake up. Nurses keep assuring us it will happen any moment, but it doesn’t. He sleeps on. Kathleen spies it first. Aaron tentatively stretches his left leg. I think of all the mornings I have watched him waken, arms and legs moving before his eyes open to declare a new day.
Kathleen and I gently take his small hands in ours, and he squeezes weakly, then opens his eyes. Everything around him is alarmingly strange and different. The breathing tube in his mouth chokes him. He struggles to free himself from the lines, to get away from these strange people and noisy machines.
Aaron looks hopefully from his mother to me and back. His eyes plead, I’m scared. Take me home. His look of innocent trust and dependency drills a hole in my own heart.
I understand his need for his father to guide him through this trial. To divert him from the many foreign and unpleasant sensations he is experiencing. To provide support that reaches inside and quiets him, even though the environment is unfamiliar and alarming. I cannot have a shadow of doubt that I am doing what is best, or he will sense that I am insincere.
The first challenge comes too soon. The breathing tube must be removed. Though Aaron has been struggling with a foreign object in his windpipe, now that the time to remove it has come, his body tenses, sweat beads on his forehead. The critical care doc skillfully withdraws the endotracheal tube, but Aaron panics. At the foot of the bed, I read my son’s eyes, I’ve forgotten how to breathe! I wait impatiently for him to remember, but the long silence continues. Then the color of his lips darkens from pink to blue.
Instinctively, I slam my hand on the bed and command, “Breathe!” Aaron sits up in surprise, drawing a big scoop of air into his lungs. As if a switch flips, his breathing resumes. He takes this in stride, but I feel as if I have just run a marathon.
We divide up the day among Kathleen, Grandma, and me. Every moment Aaron is in the hospital, someone who loves him is there with him. At first, the medications seem to drain his sense of pleasure and energy, leaving him in gray lethargy. This is not the child that we sent off to the OR. Each of us looks for signs of the real Aaron peeking through the dense haze.
Even after we leave the hospital, Aaron seems distant. We play in the park together, but he is impatient and irritable. The ants in the sandbox, usually his good friends, annoy him. He doesn’t want to linger in his favorite spot, the busy bus terminal by the GW Bridge. When we visit the bakery and the woman behind the counter offers him a fresh roll, Aaron shakes his head.
Three weeks after the operation, he still seems dazed. I can’t help but wonder if I am not responding to his needs. Maybe I am transferring my anxiety to him.
I have an epiphany. Maybe Aaron needs more privacy, space to look out the window or read his books alone. Time to play with his imaginary friend, Bogo, and to draw pictures of his trucks and stuffies.
I withdraw during part of each afternoon and listen from outside his room. I hear him singing and talking, though I often cannot always make out the words. I see him standing at the window, watching the traffic between New York and New Jersey. Gradually, I increase his private time each afternoon until he chooses to emerge, looking for company.
A few weeks later, we return early from a trip to the park so Aaron can bake cookies with his mother. This is an exciting first for him, since before the operation we avoided sweets for fear he could develop dental cavities and seed his blood with bacteria.
When we reach our building, Aaron runs in ahead of me. After greeting Pete, his close friend and doorman, my son vanishes. We live on the 17th floor, and I expect him to wait for me by the elevator. That is our usual routine.
When I get to Pete’s desk in the lobby, I don’t see Aaron. “Pete, where did he go?” Have I lost him? Could I possibly be a worse parent?
Pete laughs. “He headed for the stairs at full speed. Catch him if you can!”
I open the door to the stairway and hear Aaron’s light steps moving quickly above me. I start racing up, but he is fast. I hear him laughing as I gain on him. Finally on the sixteenth floor, I bound forward with all my remaining strength and pass him. As I jump onto the 17th floor landing, I turn and open my arms.