Butterflies

Syd lost his son James to neuroblastoma, and below offers words of hope for the parents who's kids have probably reached the end of their fight with this evil disease. His message below is to another NB parent who wrote today to Penelope's parents, expressing his grief at Penelope's state.

Henry,
Five years after losing my son to this monster disease I find that dealing with the trauma of watching his suffering is as hard or harder than the loss itself. It is because I do not want other parents to travel this road that I pour heart and soul into the James Fund. But I can say from my experiencethat neuroblastoma cannot defeat the spirit of our children, and it cannot match the strength of the love that surrounds the NB children. I would add that contrary to my thoughts at the time, it is possible to find life after NB, and it is possible to be happy, fulfilled, and to enjoy and cherish my surviving children.

I would go further, and say that although I instinctively label myself a failure for not saving my son, I perhaps have been able to contribute something to making this world a better place, if even only half the nice things people say to me are to be believed Now while I was in the place that John and Aimee and others find themselves today, and in the tremendously difficult time that followed, it bothered me ferociously that I did not love my other children as much as I loved James, and that my relationship with them was of a much milder quality. Well wake up Syd, what do you expect if you spend months and years of 24/7attention on a child, dodging the bullets in the trenches, living life's worst fear, and then try to create that same relationship with the "normal" siblings. One of the gifts of childhood cancer is that you get to know a child intimately, it is a relationship that normal parents can never experience. The loss is the greater, but the legacy can help you change this troubled world.

So I am writing all these words as I wait for the next performane of my 14 year old daughter Rebecca at a dance competition Rebecca was pretty cut up as a nine year old, grieving for her eight year old brother. Now she is a confident, cheerful, loving and accomplished young lady. And as I watched her dance, of course I cried quietly in the darkened auditorium, as dads do, but not just for the reasons normal dads do. I cried because she has managed to build a beautiful life despite years of being a second class sibling, despite the lack of stable parenting, despite the enshrining of her brother throught the James Fund and my book, despite the ongoing media fuss about her brother. I cried most of all because I thought of Penelope London, whom I saw smiling and laughing and dancing just three weeks ago, and who loves to run and leap and catch butterflies. What can be done with all our tears as we witness the horror of neuroblastoma? I am just a dad, I have no professional qualifications to comment on such hard things, but it seems to me to boil down the choices. Am I going to let tragedy destroy my family? Am I going to let neuroblatoma fill my life with its fear and horror? It was my son who said "Ya can't let cancer ruin your day" and so we put those words on his tombstone. And every day when as usual I don't feel like getting out of bed, because, remember, I'm a failure, then I remind myself that ya can't let cancer ruin your day, let alone your life, and that it is time to choose to get out of bed, and nurture my daughter, so she can dance, and my son, so that he can run, and my wife, so that she can sing.

My best wishes to you Henry, as you slay your dragon.
Syd. Wife of Pam, father of
Rebecca, James and Ben.
www.jamesfund.com