We had made it just over three weeks from Anthony’s last stint in the hospital to this one. During that time he had even worked up to eating real food, the solid stuff, food he craved like Chewy Chips Ahoy cookies and pasta. He had gained back six precious pounds. Surely, we thought, the worst was behind us. Then, a couple of days ago at about 1:30 in the morning, I was jolted out of a sound sleep by an all too familiar scene; Anthony had made his way to my bedroom and had collapsed on the floor next to my bed in extreme agony – it was another intestinal blockage. How could this be? No! He was doing so well.
God seems to know that I process things like this through metaphors and this time was no different. In the middle of my son’s cries of anguish, in the middle of me trying to find the light and some clothes, I got a cosmic download. For me, getting these downloads is like the movies when something significant happens and the scene flashes back to an earlier time in the character’s life; my mind flashes to something that ends up being my coping metaphor, the “visual” if you will, of what is happening in a way my mother’s heart can understand because I just do not have words to describe what it means watching my beloved son fight this battle while I can do nothing to stop it. This time my mind flashed back to a family outing when I was six; it only took a nanosecond, but I understood.
My parents had taken me to the Ringling Brothers Barnum and Bailey Circus – the real deal – three rings of astonishment and wonder wrapped in wafting aromas of roasted peanuts, popcorn and cotton candy; three rings all swirling at the same time to loud zany calliope music, colorful clowns and huge trumpeting elephants. High above it all, the crème de le crème, the best of the best – the high wire act. It was sensory overload for a six year old. I remember my little neck getting stiff from dropping my head way back so as not to miss a single step taken by those beautiful, glittery, sequin and spangle covered people holding long willowy poles to help keep their balance. With their toes gingerly pointed forward, cautious steps were taken, inching along, inching, inching. I didn’t dare breathe for fear that my six year old breath would become a gale force wind that would topple the daring people walking on air above me. My little mind could not fathom what would happen if they fell; fortunately, if they did, their rescue team was right there to pull them from the safety net spread beneath them.
Anthony had plummeted from the high wire we have come to call his battle with Crohn’s disease. Narrow, fragile, precarious and with no room for error, my son daily walks the high wire, the safety net below held by his medical team, the hospitals and his loving support circle of family and friends. He had made it quite a way across the high wire these past three weeks before falling. Hopefully, each time he climbs back on he will make it farther and farther out along the wire, clutching his willowy pole of courage for stability as he inches along to the other side – remission.
Still half asleep but not missing a beat, I stumbled around my tiny bedroom pulling on clothes, trying to focus my ever blurring vision and shooting questions at him –When did the pains start? Can you walk? Do we need an ambulance? His answer was the same to each question; in anger and pain he responded, “I need to go to the hospital!” Now somewhat presentably dressed (I later realized my t-shirt was on backwards), I helped him down to the car and we were off; thank God there were no cars on the street at that hour as we sped toward the incredible people who would pull him out of the net and set him back up, once again, on the high wire.
Confronting Crohn's 