Downtown Philadelphia, where we live, has erupted in screams that will go on into the early hours of tomorrow. Tonight our Phillies won the World Series, and as I write, not only are screams piercing through our closed windows, but so are the sounds of firecrackers, illegal, but the police officers will, no doubt, turn a cheek. This win is an outlet for both joy and the pain that the times, and events, have brought us all.
My husband and I joined the throngs of hundreds tonight outside, and enveloped by the new chill of winter we screamed and cheered with a marvelous rainbow coalition of strangers, united like friends. In the dark of evening only my husband could see that as I cheered, there were tears streaming down my face.
Earlier this afternoon, my daughter called my husband, her stepfather, a doctor. Her first born Charlotte Rose, now 7, recently elated to be given the part of a mushroom in the Washington Ballet Company future winter production of Nutcracker, was diagnosed with type one diabetes (commonly known as juvenile diabetes) last February. And today, in the midst of a cold, Charlotte Rose'e sugar levels rose dangerously, the first time this has happened since she was hospitalized, so dangerously, gravely ill, soon after the new year.
This ruthless disease came like a villainous monster, out of no where, following a flu, which is a story you will hear again and again from stricken families. Until it happened to those I cherish, I had no idea how lethal this illness is. I thought that if insulin is needed, one got it and all would be well. How wrong I was.
In type one diabetes, some insulin is always needed, and kids with the illness must have several needle sticks a day to determine how much, followed by the shots themselves. (Some children do have a pump, which dispenses the insulin, eliminating the need for the shots in most circumstances.) Without insulin, children will loose limbs, become blinded, and eventually die.
Once insulin is received, for the lucky kids there is a honeymoon period, which means that the little pancreas so hungry for the insulin needed to break down the sugar and carbs begins, almost magically, to produce insulin. The little one's body works hard, very hard, against great odds, to function. This, despite the fact, that for reasons still not understood, in the child with diabetes, the body itself has turned on its own pancreas and will do all it can to destroy it. And so during the honeymoon, the little pancreas, like the little engine that can, fights back. Against all odds. And always looses.
For diabetes is no fairy tale, and there has been no documented honeymoon period for longer than two years. For Charlotte Rose, now, one year and nine months after diagnosis, her honeymoon is most likely over. I would give you the days and hours and even seconds of this respite, but we are not sure exactly when the honeymoon began. I can tell you that every night I have prayed that it would continue somehow, someway for her and every other child in the world and their families given this relief. But I have known better.
Tonight, this glorious night in Philadelphia, my oldest grandchild and her younger sister by 18 months, Amelia, watched the Phillies game in DC, rooting for their mother's home town team. Charlotte Rose was very ill, her parents protectively there guarding both daughters, doing all that they could to remain calm in the waiting room of reality.
Everyone with a child who has a debilitating illness who can be offered treatment that buys time until a cure is found is grateful beyond words. Everyone I know with this anxiety provoking membership card, where willing yourself to remain calm and positive and actively engaged sees children without this hope with new eyes. No matter how sensitive and caring we had tried to be before the rug was pulled from us, each suffering child and their families now tears at our hearts with new urgency.
The older I have gotten, the more I have tried to hear all opinions with an open mind and a caring attitude. I well know that people of conscience and thoughtful minds can differ. And honest expression and the ability to see the point of view of another and compromise is a sign of a healthy marriage, family, work setting, community, society.
The answer in most childhood illnesses lies in disciplined research often concentrating on stem cells. And I believe those who deny this opportunity to children do not know how to really think, or to understand, or to view the world beyond themselves with any accuracy of vision. And to those who explain that their vision is because of G-d's will, I ask what kind of a G-d would turn away from alleviating the pain of children.
And so tonight, as the cheering and cries of victory resounds in Philadelphia, I cheer for a team and a city that has given me a marvelous transplant from the city of my birth, Baltimore, and has been so very good to me and those I love. As I cry for all children who suffer, I find new hope in this hometown victory. It feels a sign that the blind direction and lack of vision of the past eight years may finally come to an end.
Follow SaraKay Smullens on Twitter: www.twitter.com/SaraKay1710
read many of her columns in the philadelphia papers,
and each time i finish an article, i feel that my life
has expanded...as has my knowledge on a subject.
she writes with clarity and brilliance. i am grateful
every time i discover she has once again put pen to
paper. what a welcome addition to the huffington post.
Janis L. Goodman, Ph.D.