I was listening to this song tonight. Blood Brothers. Bruce Springsteen. The lyrics "What once seemed black and white have turned so many shades of grey."
This blog started as a diary to chart Jack's hospital stays. I felt that it was so important to get jack the best medical care possible to fight his Cystic Fibrosis. So much so, we spent days in the ER at Columbia, because it was the only way to get admitted and to get the best minds in medicine to treat Jack.
I so stupidly forgot that there was so much more to this than just fixing Jack's body. What about making sure that my beautiful, fearless, wild child stayed wild. What about making sure that boy who flew down down every hill on his snowboard, flew recklessly through every skate park, who explored fearlessly through life continued to do so.
I have let him down. While I was so busy making sure that medically he was getting the best care possible, I overlooked that at some point he was going to come to terms with all of this emotionally.
After all, he has spent weeks, sometimes months, in the hospital from the time he was a baby. He has endured pain that most never feel. His life has been abruptly interrupted because of his Cystic Fibrosis.
How thoughtless of me, his mother, to not recognize that at some point this would catch up with him.
I hate Cystic Fibrosis. I hate this disease and what it has taken from him. He has more courage and strength than anyone I know. But now this is catching up with him.
We live in world where are children are expected to be not just be athletes, but olympic quality. They better get a perfect score on their SATs and graduate with enough ap credits to graduate from college before they start.
My big girl is at Bucknell. She is smart, beautiful an athlete and committed. It is not easy being part of this family, as some of our holidays are spent in hospitals or trips cut short and ending up in the hospital, yet she loves her brother and has made it to Bucknell. My baby girl loves her brother too. She has always been by his side. She is a freshman, great grades, in the HS play she is amazing. How does this effect her?
I hate this disease. I do. But I will say, my children have risen above this and because of this will be stronger, more empathetic and more equipped to handle whatever comes their way.
And fear not Jack, you are surrounded by girls who love you. Our love and faith in you is endless and we will get you to a better place.
