I watched the movie "In My Hands" for the first time about a year ago. The movie is a documentary about marfan syndrome, and it tells bits and pieces of a number of people and families' stories that are affected by marfan syndrome. The first time I watched this movie, I was with the other three officers of the Twin Cities Chapter of the National Marfan Foundation and we were all seeing it for the first time. Through most of the movie, the only sound we heard in the room were each other's tears. Although all of our stories are vastly different this movie was deeply personal for all of us, and touched us all in ways both the same and different. We all finished watching and felt a need to debrief. A counselor would have been handy at that moment. If you've never seen the movie, and have any interest in learning more about marfan syndrome or living with a medical condition I strongly suggest you see it.
Although I don't think there is a boring minute in this movie, there are two parts of this movie that really resonated with me, that haunted me long after the movie finished, and both of them in a sense revolve around the issue of guilt. One of them is when a mom of a marfan child talks about sometimes just wanting to walk away from her child, her husband, everything, just to escape having to deal with marfan syndrome. So here is a secret. I've thought that. I've been that mom. There are days when it seems overwhelming, when the kids are facing something new, when giraffedaddy has some new unexplainable symptom or pain, when I'm faced again with one of the many things we have to tell our kids "no" to in order to keep them safe, and I think wouldn't it be nice to just run away. But I don't, I wouldn't, I couldn't. But even admitting to the thought of it leaves me with a feeling of guilt that I technically could, a freedom none of those I love most have.
The second part of the movie that continued to bug me was a small statement made by a doctor describing the passing on of the marfan gene. I don't remember the exact line or wording, but the gist of the statement was that for most people with marfan syndrome they are able to make a choice to risk passing on the marfan gene, but for the families where spontaneous mutation occurs (25 % of marfan cases) they have no choice. Technically, there really isn't anything wrong with that statement, but emotionally my mind fought what it said. Did we make a choice to pass this on? Do all those affected by marfan syndrome make that choice? Would anyone faced with that "choice" even call it that? I still disagree with how it is worded. It isn't that simple. I didn't make a choice to pass this on to my kids, and neither did my husband. Yes, we knew the statistics, we knew the odds, we knew the 50/50 chance. But we made a much simpler choice. We made a choice to love whatever child God gave us. Before we ever became pregnant we talked about all the things that could go wrong with our child. We talked about the possibility of down syndrome, about whether or not the muscular dystrophy that his cousins had could happen to our child too. And we decided that no matter what, we would love our child exactly as they were. So yes, we made a choice, but it was a choice to love, not a choice of passing on health issues. I firmly stand by the fact that a person with marfan syndrome having a baby makes no more a choice to pass it on than a mother over forty could be said to choose to have a baby with down syndrome. Is the risk higher? Yes. But deep down you never really believe it will happen, you optimistically believe your baby will be healthy and live a long, happy, uncomplicated life. And so many of the best things in life involve risk, so why is this any different? The truth is, it isn't. Marfan syndrome, no marfan syndrome, my kids are who they are meant to be. And if it was a choice we made to pass it on, then I'd make the choice again in a heartbeat to have the joy these kids have brought to our lives. It far outweighs any challenges that come along with their diagnoses.