One lazy weekend afternoon in 2004, Erik and I stumbled upon a movie called Something The Lord Made. This movie told the story of the invention of the Blalock-Tussig Shunt which was a pioneering step in alleviating cyanosis (lack of oxygen) in children with congenital heart defects. That afternoon we sat glued to the TV. I recall being so taken by the parents of the little girl who was the first to have this shunt placed. They struggled with the decision to do this surgery. Even their pastor told them not to, as he said they were playing God. Yet these brave parents agreed to this surgery with the deep hope of a future for their daughter. The way we were drawn to this movie that day was almost eerie, as it foreshadowed what we would face just a year and half later. I believe it was no coincidence that we tuned into this movie on that particular day. Life has a way of weaving experiences together that we can only see in hindsight.
Fast forward to 2005, 2006 and 2007. Ethan would have a fetal intervention and 4 open heart surgeries. In the course of one of those years I received a letter from a mom who was the friend of a friend of a friend. Her son had been born with Hypo Plastic Left Heart Syndrome 17 years prior. They did not know about his defect prior to his birth and he died shortly after. She marveled at Ethan, science and the options available to us.
There were many times during Ethan's life that I reflected on the families that had come before us. Those families who, with the deepest love in their hearts and the desire for a future for their children, presented them for surgery. They were pioneers. They were brave. They were scared. They just wanted time. They wanted to see their children grow up. They had dreams and visions for their children. They paved the way for us. Many of them paid a high price. They are unsung heroes. I don't know their names, but I know they exist. Ethan was proof of that.
Ethan's last hospital course was less than perfect. Things became confusing. There were many opinions. The deepest of desires for goodness and life for Ethan became tangled in varying philosophies, timing, innovation and lack of long term data. In the end there was cause to go over and over the choices made, the recommendations given and the course Ethan took. There was much to learn. There was much to change. And we became one of those families that I had reflected on those years before.
At first I was scared to share my thoughts, my opinions. I observed things that needed to change. How was I going to do that? What would people think of me if I departed from the party line of the amazing promise of innovation (which by the way I still believe in). How would they respond to me if I waved the flag and said...wait..think of that differently? You see I wanted to believe in the choices I had made, in the path I had believed in with my heart and soul. And even if we had made different choices, the outcome could have been the same. I'll never know. But I knew for sure, the way people experienced that path needed to change.
One day it dawned on me....I'm the mom before someone else. I'm that mom who gave her all; paid a high price and loved with a love that knows no boundaries. I had a choice. And I decided, with the help and encouragement of people that love me, that I get to decide how my story goes. Through incredible personal work, through forgiveness, through divine intervention, I knew that I would try to make others' stories different than mine. This profound realization is the spirit that built Ethan M. Lindberg Foundation. It's also the cry of my heart, the soap box I'll stand on, the passion of my life - to pave the way, to make a change, to make a difference for those families who come after mine. For those children who come after Ethan. Will I accomplish all I hope to? I don't know. But I owe it to Ethan and all the children who came before him, and those that come after him, to try.
You are the mom before someone. The dad before someone. The friend, the student, the scientist, the doctor, the teacher, the business person, the author, the someone before someone. Someone will come after you. They will stand on your shoulders. You can make a difference for them. You can stand tall and help make their story better. Even if you cannot make yours better. You get a choice. You always get a choice. I have come to a place in my life where I believe there are no coincidences. Ethan in the hospital for 13 months..no coincidence. Our story...no coincidence. Your story...no coincidence. You hate the outcome of your story? I get it. I do. But you get the choice. Make a change, make a difference. It doesn't have to be in a loud, sweeping way. It can be quiet and small...it's still making a difference. Love the people who tried their best, even if they came up short. Love them into doing something different next time. In the process of all of this...love yourself. You are a beautiful creation. You are created to make a difference.