An Unusual Child

Tomorrow my child shall be discharged form the care of her physicians at The Children's Hospital of Philadelphia (CHOP).  She will be twenty three in October and a patient in their care for twelve years.

It is wonderful to be in the one percent of the wealthy, the intelligent, the gifted, the sublime, the secure.  She has been and remains in the one percent of patients at CHOP. Her ear surgeries failed, and failed again.  Her ear drums, simultaneously recalcitrant and weak, refused to stay in place; either bulging or retracting with infection after infection. Pierced by tubes, they refused to heal and close. Finally her right ear drum angry and exhausted simply vanished.  One unfeeling pediatrician upon seeing the depth of her ear and all the tiny bones therein, exclaimed "Where were you when I was studying the bones of the ear?"

When she was all of nine, the year her drum disappeared, her teacher, in some mad effort to attain control, struck her when she, in pure and unrelenting  isolation, would drift into her own thoughts, too tired from straining to hear to pay relentless and worthless attention to lessons.  When I withdrew her from speech therapy, where she was drilled in what to say over and over again, the same teacher screeched so loudly at me, that her students turned in horror to see what on earth had made their teacher so insane as to make such a noise. I knew then, a mere part of the pain she suffered daily.

In years of effort, headaches, illness fever, disbelief, frustration and tears we came to Children's where after six more surgeries, she finally suffers a mere moderate hearing loss, which cripples most adults. This is the "success" with which she lives in the one percent of CHOP patients. We have wept that she could order in a restaurant with out asking "What?" I have wept when at parent teacher night a teacher asked me what was different about her, she answered a question this year. She has been appalled that the cruelty showered upon, what she thought was only her, was in fact drowning all the middle school students, once she could hear the conversation in the halls.

Tomorrow all that history is passed out of the hands of the physicians of children and into the hands of physicians of adults.  I pray that they have the compassion and kindness that she has had at CHOP. I cannot imagine that any group of doctors will ever understand the journey that she and these surgeons have had together.  I pray that they will come to know and respect her capacity for setting and unyieldingly attaining a goal.

I have an enormous amount of respect for my daughter, who has walked through a life of suffering, pain, prejudice and isolation with a determination I have have never come close to possessing.  She remains an individual  dedicated to peace, love, happiness  and compassion, married with a fierce and unyielding rage at injustice, inequality and cruelty. She writes beautiful books, stories and music dedicated to encouraging self determination, evaluation and growth.  She could have wallowed in self pity and fury but she as chosen another path.  She has my admiration.