Not Perfect, But All Right

2014 has not been kind.

On a cold, snowy day in January, when my husband was in Tokyo, my 10 year old son received a lifelong sentence. It began with a sick visit to the pediatrician followed by another sick visit to a gastroenterologist. As I sat across from this woman, who I disliked as soon as she entered the room, I could not imagine that my son’s world was going to permanently change. After a brief examination and a denial of all symptoms from which she was sure he was suffering, she stoically pronounced “he has Crohn’s,” which only made me hate her more than I already did. She prescribed antibiotics and advised that he would need to be examined under general anesthesia.

That night, my son slept in my bed. I spent most of the night feeling his forehead, making sure he was still asleep, plotting the death of that emotionless doctor. By the time it was morning,  we were on our way to the emergency room. A morphine drip was administered and my son finally relaxed.

An MRI revealed that my son had an abscess which required draining. He remained on the morphine as well as IV antibiotics and by the time the surgery was performed, the abscess was already gone. We were there for several days, during which time every physician assured me that they did not think my son had Crohn’s. I assured myself of this as well, right up until the time we were leaving when the discharging doctor looked over his forms and said “I don’t see what else it could be aside from Crohn’s.” And just like that, the rug on which I was solidly standing, was pulled out from under me. Again.

A few weeks later a blood test revealed no inflammation. That horrible doctor was wrong. I knew it. A week after that my son started to complain of stomach pain. A week after that, a stool sample was three times the normal level and I had to offer some begrudging respect to this woman who so casually spoke the words that would change my son’s life. By April, a colonoscopy/endoscopy confirmed that she was, in fact, right. She was always right. My son had Crohn’s Disease and the tiny thread attached to my heart that came loose in January, started to fully unravel.

I did not want an education about fancy medication, about the physiology of the colon, about colostomies, about therapies offering ways my child can “live with Crohn’s.” I wanted him to be the person I thought he was, physically, on the morning of that snowy day in January. I wanted to circle the equator over and over like Superman until I reversed time enough to unearth Lois Lane from her car and free my son from a diagnosis I did not want attached to him. I wanted to find a new doctor, one that was a human being, one that would not tell me, when I asked if my child would be ok, that she “can’t predict the future.” I wanted someone to hold my hand and my heart.

I know that there are worse things in life than Crohn’s Disease and that my son will be all right. But we mothers don’t want our children to be just “all right.” We want them to be perfect. Being a parent is so hard. From skinned knees to bruised egos to diseases about which we want to know nothing. I would love it if I could just kiss this terrible boo boo or apply ice to it, or simply make a wish and watch it fade away until there is nothing left but the perfect body into which he was born. He’s learning too much too soon and I hate it. He has a sophisticated medical vocabulary, refers to his pills as “my meds” and is overly concerned about his height and weight. On the other hand, right before a second operation, he gamely dressed up in his gown, sterile shower cap, and held up a book, pretending to be the Statue of Liberty.

So maybe he’s doing all right already. And maybe 2014 has been kinder than I thought.