Whose Story Is It?

I was reminded, this week, about something that we all do when we tell our stories. It isn't intentional but when we share our own life experiences - we have to discuss the people who shared our journey with us. These interactions become a large part of our bigger story. The problem becomes how much is too much?

There are so many amazing families that we have met over the years - many will remain anonymous due to the limitations of the publishing process. When I wrote about some of our more influential contacts when we were in the hospital I had to ask myself what was the point of sharing these encounters. Very simply, the point was to show the critical nature of peer support. The things another family or patient could tell us that a doctor or nurse could never speak to. The fact that what another person shared with us about their own lived experience carried far more weight than someone who doesn't live with congenital heart disease. This was absolutely critical for us. We were shown the uncertainty of our outcome. We saw those who had survived and thrived - but we also were brought down to earth seeing families who struggled with the reality that their child was dying. These families taught us so much.

Sharing some of these experiences in the book was really important to me - but I had to be very careful not to get into telling someone else's story. This was very tempting because some of our peer supporters had absolutely captivating experiences that really deserve to be shared - but that is their decision - not mine. I consolidated some of these experiences to a couple of families/patients who demonstrated my point. Some were named and some were not. I tried to keep my perspective on sharing how these people influenced us and not get into the details of their stories. That was not easy.

When I wrote about the many experiences that I had with our health care providers I also had to be quite careful because many of these people are still working today and I have to keep in mind that they require a certain level of anonymity. For all of the people who cared for us, I chose to use pseudonyms. Some of which are quite transparent to many of their co-workers but I also chose to have "named" characters who were a compilation of several people.  I use the name "Jen" and "Lisa" for some of our nurses.  This was a bit of a joke because those were the two most common names among our nursing staff. I would guess that we had almost a dozen nurses whose names were Jen or Lisa. I also kept things fun and interesting as I changed the gender of one of the characters. Perhaps I had a little too much fun with pseudonyms. 

One character deserves a special mention in the book and that is Nicole's birth mom. Although Nicole's adoption is an open adoption the identity of our birth mom is not public.  As Nicole is now 14 - we have come to a point that the decision about sharing these identities publicly is a decision for Nicole and Birth Mom. This left me a challenge as to how to identify her in the book.  We talk openly about Nicole's adoption in our home and we often talk about her birth mom.  To prevent the accidental slip up of revealing her real name she is often referred to in our home as Birth Mom. When I wrote the book I used the name "Birth Mom" as a placeholder with the thought of giving her a pseudonym later on. Susan and I discussed this and we decided that the name "Birth Mom" should become the name of her character. It would make it easy for the reader to identify the character and in our opinion, the title "Birth Mom" was a revered title. I used the capitalized letters to indicate a proper noun.

When I went through the editing process the use of the name "Birth Mom" became a little contentious between myself and the editor. We had several - back and forth emails discussing the topic. My editor was not a fan of the term the way I had used it. However, the more I thought about the name the more I was adamant that the name, as I had written it, must stay. If the title "Birth Mom" is viewed as a negative or an adjective that diminishes a person - then I feel strongly that we need to change that perception. I hope how I wrote about Birth Mom might change some people's minds about these selfless women who put their unborn children above anything else. I am in awe of them and they deserve every support we can give them.

With all of these editorial decisions, I was still left with the worry that how I had captured some of the characters in my book would be met with criticism. I think I could handle it if I got a bad review from a random reader. What would be much more difficult would be if one of our friends or family did not appreciate how they were portrayed.  That would be far more difficult and something I would have to ask forgiveness. That's the risk of writing a memoir - is that you cannot write about yourself in isolation. It is about human interaction and sometimes those interactions are a little messy.  That's life.