For the past year and a half, I’ve been working on my manuscript that shares the story of my family. Yes, the story revolves around our battles with congenital heart disease but the project has taught me so much more. I suspect that some of my future posts will be based on some of these discoveries - some of which were victims of the editing process.
Writing the basic story was easy. The fact, dates, times, and chronology was fairly easy. After all, it’s my story. The challenge became in drawing a conclusion or trying to make sense of everything that happened to us. What was the point of it all?
I still recall several conversations with Susan as we talked about the many lessons that we had learned. I was curious if she was thinking the same things as I - or were we interpreting things differently. It was an enlightening exercise in introspection.
One thing that we talked a lot about was adoption. That seems strange given that our adoption story could be considered a footnote in the story of our family. As I wrote and thought about it more I realized how important our adoption experience was and how it prepared us for what was to come.
I still recall vividly, sitting in the PICU at the Stollery Children’s Hospital and having some of our nurses explain the heart transplant process to us. When we arrived in Edmonton we knew we were going there for the transplant but we didn’t know a lot about the process. We were so freaked out - we just knew that transplant was the only option and we wanted it to happen as soon as possible. Not much else mattered - we were in crisis mode.
As we got more information, and as the transplant process was explained to us, we had this strange sense of déjà vu. Things were starting to sound eerily familiar. We had no control over the process. The transplant could happen in a day, a month, or possibly - never. We were powerless and all we could do was sit and impatiently wait. We were completely dependent on somehow - somewhere that someone might make a choice. A very difficult choice.
The sense of déjà vu that we felt was because we had been through this identical process before. The loss of control that we felt and the complete dependence on others was the identical process we went through as part of the adoption process. In fact, even some of the words that were used were the same. What was even more intriguing to me as I now reflect upon that experience was that adoption prepared us for something else. Caring for a child that would require a great deal of extra support for the rest of his life.
When we went through the adoption process. We were constantly reminded that we needed to be prepared for every contingency. We could adopt a child with health issues, or disabilities. These were things that were impossible to predict. Susan and I had to ask ourselves a lot of difficult questions about how we would handle an endless number of possible scenarios. Not only to handle them but be willing to commit to a lifetime of challenges that they might bring. The ironic part of this story was that when we adopted Nicole she was the picture of health and perfect in every way. All of the training and preparation we had done to prepare for potential challenges did not materialize. All of the apprehension an worry that we had felt just evaporated.
The conclusion that we came to was that all of the preparation and education that we received as part of the adoption process was not preparing us for the child that we adopted but in time all of that knowledge would be utilized (and needed) when we had our biological child (Russell) and found ourselves in a life and death struggle in an intensive care unit. This time we would not be adopting a child - we would be adopting a heart.
I know that sounds strange, but when the transplant process was explained to us that is the conclusion that Susan and I came to. After all, it was how we had been taught. This realization was met with puzzled looks when we tried to explain this concept to some of our medical staff. I still recall one nurse having a shocked look on her face when we shared our insights with her and I feared I had said something bordering on offensive. A few hours later the same nurse came back to me after having given my comments some thought and she understood what I was getting at. I don’t know if she agreed with my conclusion but perhaps she understood that adoption was something we understood and that we were using our own experience to cope with our grim situation.
Our experience with adoption was such a positive experience. It taught us so many things and forced us to think about the things that were important to us. That experience gave us clarity and more importantly hope when we were faced with the uncertainty of a heart transplant. In many ways, adoption was a perfect preparation for what we were going to face. Only now do I realize how important that was to us. It probably got us through some very dark days.
That is also the challenge that we have when we try to support people who are going through difficult times. It is hard to understand what they are going through when you don’t understand the context of their lives. This is why it is so important when we try to offer comfort to be quiet and listen to what they are saying. What is shared may not have significance to us, but it is obviously something significant or they would not have taken the effort to bring it up. We are the sum total of our experiences and inevitably we rely on our experience to cope with the challenges in our lives.
All of our life experiences are so unique and it is really interesting to discover how all of the pieces fit together. After all these years I’m still quite amazed.