My letters to you are always personal and while others read them they really have always been between me and you. Today, my little buddy, I am writing to you to tell you something that has been haunting me since I read about it on Friday. I can’t quite get it out of my head and I can’t come to terms with it at all. I posted it on my facebook page with the title that “Everyone should read this” and it received no comments at all and that bothered me too.
On Friday, I happened upon a blog written by a mother of a three-year old girl with a rare disease. She is a patient at CHOP – a hospital we considered for you through the years and the hospital that always is either #1 or #2 of all Children’s Hospitals. The year we spent 117 days at CHB it was #1 and it always pissed me off that we were at the #2 and not there. So through the years I have held it in pretty high esteem – trusting the research that comes out of there and was a place I looked at when I was at those points with you that I felt we were ready for a new set of eyes. Anyways, this three-year old girl named Amelia has a disease which will cause her kidneys to fail in time and she will need to a transplant to live. In a meeting with her doctors and a hospital social worker, her parents were told that she would not be given a transplant because she was “mentally retarded”. It was one of the things on a list of conditions that they would not perform a transplant on. The mother wrote this much more eloquently and detailed than I ever could and I think everyone should read this. And everyone should be pissed. And everyone should want to do something about it. http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/
I guess what haunts me the most about this letter is that it could so easily have been me and Daddy listening to the doctors with you asleep in the stroller between us. Except if it was us, we probably would have had Ethan with us too since he was a huge part of your care. And that bothers me just as much as anything else. That Ethan could have heard people make such a gross judgement on you and your life. That people think they have the right to make these quality of life calls without having any real clue about what life outside of their world is like. And I guess what else really bothers me is that I can almost hear some of our friends saying they understand what that doctor was saying – again people thinking they have a clue when they don’t. And people who don’t have any idea and don’t want any idea about raising a child with such medical complications.
And I think about how fortunate we were, especially with Dr. Grottkau. Imagine if he decided not to perform your hip surgery because the odds were that you weren’t going to walk or because you fit in one of the categories on a sheet of paper or because he thought his definition of quality of life was the only one that mattered. He wasn’t like that, in fact, I remember him telling us the reason to do the surgery sooner than later was so that your hips would be better prepared for when you were bearing more weight. He gave us all hope, didn’t rob it from us.
And the irony too is that today is Martin Luther King day and everyone is posting quotes of his on facebook. And how important it is to be the change that we want in the world and to be self-reflective and all that. I get it. I believe it. But it isn’t just about one day – it is about taking the time to read something and taking the time to fight against what is bullshit in this world. And Jakey, you did that everyday and I am trying to do it here now. I miss you buddy and I love you so much.