A couple of years after my second son was born, I watched my two boys on the playground with a swarm of other children while I breastfed my young daughter. As I looked on, the all-too familiar semi-repressed feeling of alarm cropped up inside me. But this time it was not for Peter, it was for Stephen, my younger son.
It seemed that Stephen had been falling down a lot lately. Even the slight breeze caused by another excited toddler running by knocked him on his cute little rump. I leaned over to my aunt, a nurse, and asked if she’d noticed. “Yes,” she replied, “I’ve been trying to figure out how to tell you.”
After a few visits to the doctor, where I was written off as a hypochondriac, I finally ended up taking Stephen to the emergency room while visiting relatives out of state (the kids’ dad was deployed to the Middle East). This doctor took me seriously and ordered an MRI to be done immediately.
When the doctor returned with a social worker, both looking somber, I didn’t expect happy news. Yet I still couldn’t have foreseen what they were about to tell me: Stephen had a very serious and rare condition, a tumor inside his spinal cord.
I was shocked, too shocked for tears. All I could do was pet his little head and watch him sleep in the hospital bed. In the distance, I could hear what sounded like my mother and the doctor discussing how well I was taking the news, but it was hard to hear through the sound of my head pounding. Watching Stephen’s chest rise and fall with each breath consumed me. I was startled by the sound of the room returning to normal volume, the doctor asking if I wanted to transport him by car or ambulance to the children’s hospital for a biopsy surgery. When we got to Children’s Hospital, I felt relieved. Here he’d receive the most appropriate care for his age. But upon arriving at the neurology ward to be checked in, my optimism quickly faded. We were surrounded by children with horrible and debilitating diseases.
Stephen was hooked up to a number of monitors and endlessly poked and prodded. He shrieked every time a doctor or nurse entered the room and pleaded with me not to let them touch him. They tried their best to put him at ease, but he wasn’t buying.
I sat by his bed every moment he was awake and at his slightest movement asked if he was alright. After a few days, another mother finally convinced me I had to eat something. As weeks passed and I roamed the hospital corridors during his naptimes, I had to consciously remember to breathe. When he was well enough after the surgery to sit up again, I’d pull him behind me in a little red wagon stuffed with pillows while he stared at the brightly painted wall murals, unimpressed.
Then one day the doctor came in and said we could go home. They’d prescribed a course of chemotherapy and we were to be discharged that day.
When we brought him home, my other children, especially Peter, were in a tizzy about the lack of normal routine. They had no idea about the shattering events of the past few weeks. They just wanted to play, to cuddle Mommy and to eat their snacks.
It was difficult for them to have me suddenly paying so much attention to Stephen and his every whimper. Yet I couldn’t bring myself to scold him when he would frequently throw a toy across the room out of frustration or yell at his sister. He was mad and I thought that was understandable. And though the other children had to finish their dinner, Stephen could eat what he liked, even if it was only dessert. They quickly became very jealous. My house turned into bedlam.
I couldn’t decide whether to enforce rules with Stephen or just keep him as comfortable as possible. Following much reflection, I realized that only by giving him back routines and rules could he be truly comfortable. I couldn’t decide whether to enforce rules with Stephen or just keep him as comfortable as possible. My doting had made him feel even less normal and less secure, and my other children needed the return of some consistency. They were still experiencing their childhood, even if Stephen’s was being ripped away.
The first time I put Stephen in time-out for bad behavior he howled at me. His face contorted in revulsion. After all he’d been through, how could I punish him? It was heart-wrenching to continue, but it was also the moment of truth. After he calmed down, his brief time-out ended and he returned to play. To my amazement, for the rest of the day he was utterly happy. From then on, when I said he should share a toy, the object was not flung at my head. He listened to me.
Could it really have been that simple? It was. Little Stephen started getting his personality back; normalcy returned as he started to feel like an actual member of the family rather than an anomaly. Don’t get me wrong. He’s now six, and still has his fair share of temper tantrums, but they’re within reason for his age.
After a few more surgeries Stephen has ended up in a wheelchair and his cancer has reoccurred. During weekly treatments, he describes the chemo as a super hero fighting against the evil villain. The doctors are hoping this combined with future treatments might cure him, but they aren’t promising anything.
At home, we still have our struggles. But Stephen is as well-adjusted as he could be and has a good time telling new friends out at the playground all about why he can’t walk. They marvel at his lime green wheelchair. Then Stephen asks me to push him on the swing. And I remind him to say please, just like I do with the other kids.