September is Histiocytosis and Children’s Cancer Awareness month
“Children’s hospital” is an oxymoron–not just two words that don’t belong together, but a thing that shouldn’t have to exist at all. Kids are supposed to be the healthiest among us. There’s something not right with whole buildings dedicated to things that go wrong with them.
Children’s hospitals are a bizarre proposition: a place where the parents are as dependent as their children, depending on doctors for their schedules, their information, their hope. We’re easy to recognize in the halls, even without our special tags associating us with our VIP’s. You can tell us by our not-at-our-best appearance and by one of our standard expressions of fear, worry, or fatigue. We observe an assumed code of avoidance as we pass each other in the hallway: because we don’t wish to be seen in the clothes we slept in, we grant each other the silent dignity of ignoring each other’s unwashed hair and tear-streaked face. Our zombie appearance barely conceals the grief and guilt and sheer terror on the inside. I often wept uncontrollably as I stepped outside of the hospital during our long stay, temporarily shedding the armor that I wore inside to protect and fight for my child.
Our children’s rooms are places of tenderness, but also of terror, where every day, every visit by a doctor has the ability to change our lives forever. The hallways are no refuge. Here other parents’ children are being moved to their next test or procedure: bald, staring vacantly, heavily bandaged, hooked up to machines. We passed too many children’s rooms where, day after day, the only visitor was a nurse. A child without an advocate, without love, is the saddest of all.
There are also wonderful stories in these places, stories of healing and miracles and love. These stories must be what makes it possible for the dedicated staff to get up and face each day. Yet I am dismayed that these institutions are needed at all. I look forward to a place and time–somewhere, someday–when no child will ever hurt again.
“He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” –Revelation 21:4