This week three years ago Ethan was on ECMO in the CICU in Boston and he was headed for surgery to place a ventricular assist device (VAD) to hopefully bridge him to transplant. Ethan had responded to ECMO very well and it gave us reason to believe that taking the pressure off his left heart and clearing his lungs would help him get on the transplant list. That week I had a supernatural ability to be hopeful and to believe that we could keep going on this very long path. I will never forget walking Ethan and his ECMO circuit from his room to the doors which would lead him to the operating room for one last time. I can still recall the way his cheek felt when I kissed it. I knew we were running out of options quickly, but I had to believe that he could pull this off. The events of the next 24 hours would be the darkest of my life.
For 13 months we had lived away from home. We did 9 months in Boston, then 3 months in Milwaukee and then back to Boston for a final month. I still remember walking with Erik into Children's telling him that I would live in a cardboard box if it meant we could have Ethan. We were in this for as long as it took, no matter what.
During Ethan's VAD surgery I made this video. I honestly don't know what possessed me to make it or why I chose the pictures I did. I will warn you there are some tough ones to see. I don't even know how I arrived at this song.
We sat in the same spot in the surgical waiting area we had for every other surgery. We knew the drill. The nurses would come with updates and the surgeon would come at the end of the surgery. I was becoming very anxious as much time had passed with no update. Finally a doctor came out and she told us that Ethan had been bleeding a lot and that though he was still in a rough spot, the bleeding was getting better. Something in me shifted at that moment. I felt a way I had never felt before. Now I know it was my intuition. It was something in this mammas gut that knew things were not going in a good direction.
The next morning Ethan died. And I went on a journey of feeling totally and utterly abandoned by God. This God that I had believed in and prayed to and to whom thousands of people prayed had totally abandoned me. Did he not see this mother who literally was hanging together by a thread who trusted and believed...and asked others to believe?
I was in Boston a couple months ago and got to sit right outside the bedspace where Ethan last laid. I sat with a CICU doctor and talked. It was a beautiful talk and it was an honest talk. I told him what I have come to know is truth. The whole time we were held. The whole entire time. I'm going to say it again...the whole time we were held. God never left. That CICU is the holiest place I've ever been or will ever be. It is holy because it is filed with incredible love. Such deep, desperate and abiding love. And God IS love. That's it. I don't know that I believe prayer changes things. I still wrestle with that. I do pray for people. I desire deep in my heart goodness for people. But if anyone was going to get better it was Ethan. And he did not. But it does not mean God was absent. Because I don't think we are here to experience only happy times. I think part of this life is pain and loss. I'm certainly not the only one to experience it or confront these questions.
I have come to know deep in my soul that it all belongs. Life, death, joy, sadness, accomplishment and failure. It all belongs. It all shapes us. I also believe that it's not random. And that there is purpose in all of it. There was GREAT purpose in Ethan's life and there is purpose in his death. You see we are souls that never die. And so my love for Ethan never dies. His love for me never dies. If I could strong arm God or the Universe to hand me back Ethan I would. If I could negotiate my way into having him back I would. But I cannot. And so in this broken place that I have crawled through these last 3 years and I have discovered that I am held. That I am loved and though it does not make sense, it belongs.
I have not watched this video since June 11, 2012. I have not been able to. I could not even hear the words of this song because I did not want a "broken road", I wanted a fixed one. I did not get the answer I prayed for, or the one I wanted, or the one I expected. But I got the road that I was created for. And so I'll be damned if it's not going to be a road of love, of joy, of purpose. It's a road where Ethan's life and his legacy will give love to many many people. You see I was made for this.
You were made for your road..your imperfect road. Even for the one you hate. The one you want to wrestle your way out of. You can find purpose in that place. I promise you. I'm still working through my feelings about God. My dad wrote me a note the other day that said...it's not about figuring it out, it's about being present; it's about listening to that still small voice in my heart. Because in that place....I'll find God. I'll find the deep enveloping love of God. Ethan is with me. I love him and I know he loves me. We walked a wonderful, fun, purposeful and hard road together. And we will continue to walk together until our paths meet again.
I had one very vivid dream when we were in Boston. Ethan was wearing his Rutgers red hooded sweatshirt with his navy Boston Red Sox hat running towards me. He was healthy and smiling. I took that dream, at the time, to mean he would get back to that place. Now I know I will have to wait to see him run toward me again. But until that time comes, I will walk this broken road with purpose and love. I am held. You are held. We were made to walk together and to love each other no matter the cost.