A mothers rant and call to action
I am writing to you today from our living room where our sweet little boy is sitting in his high chair, playing with a glow worm and watching chuggington. In the last month we have been swinging at the park, grocery shopping, visiting with family and friends and in general having a lovely life. Paul makes us live bigger and brighter everyday. He is doing really well but for some reason my heart is still heavy. I am involved in the CHD community and I know a lot of children with heart disease. I have watched children who are dying be brought back to life only to flourish and watched children who are flourishing take a turn for the worse very quickly. I should be thankful that Paul is doing well, I should rejoice that he is here everyday and I do but I am also worried and angry. Maybe it’s the wrong thing to do to put these feelings out there but I am willing to take a risk.
HLHS is not curable. It’s not fixable. It’s not repairable. The surgeries Paul has undergone so far and will in the future are to give him an extension. For some kids that extension turns into a transplant very quickly, some don’t even make it there, and for others in their second decade of life the Fontan is still “working”. I have been grieving a lot lately and I want to put those feelings in the right place. The first place for my energy is Paul and Dan but when they are asleep here’s what’s keeping me up at night: What are we doing to CURE HLHS? Not manage it, not palliate it but to cure it? I want, no I need this to happen for Paul in my lifetime. I want to see this occur. I would give anything for it with the exception of my darling Dan. I would give away our house, our cars, all our money. I would clean toilets for the rest of my life, give up what’s left of my looks and my body, I would give ANYTHING to ANYONE who can find a solution. I would give Paul my left ventricle if they’d let me and I would give him my heart if it meant he would live to be 60 or 70 or 80… I would work every single day of my life to raise money for research that finds a cure. I would give anything and I know a lot of mothers who would do the same.
Dr. Suess said “unless someone cares a whole awful lot- it’s not going to get better; its not.” I think that the best ideas and the best research can come from anyone. A medical student, a friend, a first year intern or fellow…. I just have to believe that someone out there is brewing a solution…If you know them, send them to me or if you are a medical person reading this blog (first, thank you for all you do for us and Paul) and second tell me what you need to work on a cure and I will do everything I can to help you.
Maybe this is a mother’s crazy, unrealistic rant for help and grasping at hope but I just can’t stand this anymore. I feel like CHD and HLHS in particular takes too many kids every year. What are we doing to cure HLHS?.... What are your thoughts? Do you know someone working on this? I want to issue a call to arms to all those out there to work on a cure for these kids and I would love to help.