Readers who are familiar with this page will notice that we have had to revise our letter to make it more of an open musing. This letter is not intended to blame, but merely represents our attempts to come to grips with Will's suffering.
Our infant son required hospitalization from the moment he was born. He was small, fragile, and in need of specialized care. However, even through the tubes and wires, he looked perfect to us. His skin was perfect, his fingers were perfect, and with the exception of his heart, his body was perfect. We, on the other hand, were terrified. We were trying to understand both how to be first-time parents and what was wrong with our son. It was our understanding that our son had a serious heart condition. It was also our understanding that it was ultimately a repairable problem.
We believed what we were told about our son and his prognosis... We believed it because it came from authorities. We believed it because it was backed by tremendous resources. And we believed it because we wanted our son to be well.
Eighteen months later our son travelled to Boston. Will still looked perfect to us (and always will). However, the reality was that he had experienced numerous medical problems during the past 18 months. He still did not have a repaired heart, he experienced medical conditions affecting almost every part of his body, and he had undergone numerous procedures from surgery to spinal taps to constant needle sticks. Furthermore, Will's health routinely deviated from the course that we understood that it was expected to take.
When we arrived at Children's Hospital of Boston, it was like entering another world. Events transpired that we thought were unattainable. Within two days, William's heart was repaired and shortly after that he was off of the ventilator. Within four weeks, he was home and was not attached to any equipment other than his feeding tube.
During the first 18 months of Will's life, he had an unrepaired heart and he experienced numerous other medical problems. In two days in Boston, we saw a miracle happen. Only it wasn't miraculous in Boston--in fact it was routine. Imagine our surprise at the differences in treatment plans and outcomes at different facilities across America. We often wonder if Will (and our family) might have had a very different life if he had been born in Boston (or Ann Arbor or Rochester, MN, or Pittsburgh or Milwaukee). Imagine our surprise at being asked why we had waited "so long" to have the surgery to repair Will's heart.
Now it is 4-1/2 years since William was born. Everyday with him is an unexpected gift. Everyday for him presents a new struggle and challenge for him. As we initially wrote this, William had the stomach flu--an unpleasant condition for any child. However, every time William vomits, we live in fear that he will aspirate, because of his paralyzed vocal cord (happily he did not aspirate this time). We worried that he might have complications of his hip and dental surgeries last month. We wonder if this month's cardiac assessment will indicate that he needs surgery. We wonder if he will be mentally and physically able to go to school, get a job, live independently, and find someone to love him (scars and all).
We wonder how to explain this to our son? If we are fortunate enough that he lives long enough and is mentally able to comprehend his illnesses, how do we explain it to him? How do we explain to him that his body is covered with scars and that he is missing part of his hand? How do we explain it to him when he continues to require painful medical treatment and surgery? How do we explain it to him that he is not physically able to do what others his age are able to do? How do we explain it to him when he is mentally unable to do what others his age are able to do? How do we explain it to him when other children taunt or abuse him because he is different? How do we explain to him how and why this happened? How do we explain it to his brother that William has to go back into the hospital?
This is not the first time we have asked these questions--and realistically they will haunt us all of our lives. It is Will's dignity and courage that allows us to persevere in the face of these unanswered questions.
Tom & Lori Kwapil
March 5, 1999