A guest post by Joan's Dad
During the time my wife was pregnant with Joan and the time since, there is a question that gets asked and it’s tied to an assumption. It’s a question that gets asked more for confirmation of the assumption behind it than any other reason. The question is essentially in long form, “Why are you going (or putting yourself) through this? Is it a religious decision?”
This is such a strange question to me and a telling one at the same time.
I say strange because if you’ve got a loved one that is stricken with a fatal diagnosis, you’d do whatever you could to give them comfort and love and let them know what they mean to you. When you comforted them it would have very little to do with religion and more to do with love for the person and your desire to show them the love that exists for them. Love is our greatest asset of value and kindness is one of its manifestation. We all have different levels of physical riches, but our ability to love greatly and act kindly is completely independent of our bank statement.
I also said it was telling. I believe it to be telling as it is, essentially, a leading question. The way it’s typically offered it is treated nearly rhetorically. The assumption is that “GOD” told me that we had to continue with the pregnancy. It had to be that somewhere there was a burning bush or a talking tree or some dream with clouds and trumpets where some booming voice told me what I should do. That had to be it, because I’d have been out of it to CHOOSE the pain that continuing with Joan would surely lead to. Take a step back and realize that. For me to love, support and fight for our daughter, the more palatable explanation involves flaming/talking plants? I’m an engineer. My primary means for processing the outside world is through observation, logic and repeated results. While I can assure you that if I do encounter a talking tree it will have my undivided attention until the fall when the leaves are gone and things get awkward as it stands there naked, I can also assure you no trees are talking to me. To me the whole assumption is comical. To clear the air, let me say that the decision that we made to continue our journey with our daughter was the easiest I’ve ever made. It was not an easy decision because of religion, it was easy because it was something done out of a parent’s love. The result of the decision was challenging, but choosing to fight for as much of our daughter’s life as we could beat out of the odds was like deciding whether or not to pour gasoline over my head and play with matches in a fireworks factory.
Life is all things in a spectrum from pain to joy at one time or another. The lows don’t make the highs any lower.
Knowing that we wouldn’t have our daughter for as much time as others didn’t take away our love for her and our desire to embrace her life on its terms without concern for our own. I didn’t choose to have a daughter with a life-limiting diagnosis, I chose to love my daughter no matter what. That’s what love is. To me that’s what parenting is supposed to be.
