Tricky Questions


One evening about a year ago, Tim and I sat down to watch the movie Arrival, based on the short story “Story of Your Life” by Ted Chiang. I had heard a little about the movie and knew it was about aliens. I don’t usually get into alien movies, but Tim had seen the movie already and thought I would like it. I indulged.


By the end of the movie, I was sobbing. I almost never cry at movies.


The main question posed in the movie, figuratively and literally by the main female character (played by Amy Adams), was “If you knew what was going to happen in the future, would you go through with it?” Because of the powers that the aliens show her, Adam’s character is able to see both the past and the future simultaneously in an unending loop. I know, a little meta, but I promise it makes sense in the context of the story.


The reason this question is difficult for Adam’s character is because she has a daughter who falls terminally ill as a teenager and dies. The part that reduced me to a blubbering mess was her answer. Her answer was “yes”. Even though she knows how the story will end, she still wants to fall in love, get married, and give birth to her child she knows will die less than 2 decades later.


Hits a little close to home.


This is a question I think about frequently. If I knew what was going to happen with my sons, would I continue down the same path? Would I marry Tim who has the same mutated gene as me? Would we still decide to have children? Tricky questions.


Happily our society is beginning to view differences in ability as providing a more rich and diverse collection of people. I wholeheartedly agree. Life is richer surrounded by people of all kinds. In so many ways, SEPN1 related myopathy is shaping Peter and Michael into who they are and who they will become. So, would I take their disease from them if I could? Tricky question.


I’m in good company in asking these questions.


Friends of ours has a son, Matthew, who is autistic. Matthew’s mom keeps a blog chronicling their life with him and autism. In one of her posts, she wrestles with the question, “If there was a vaccine for autism, would she give it to her son?” She explains that she is hesitant to say yes because autism is a part of what makes Matthew his lovable self. Obviously autism is different for everyone, but for Matthew he isn’t in pain and leads a generally “normal” life. Is autism a problem that needs to be fixed? Tricky question.


Recently a high school friend who has a child with Down Syndrome posted a video on his Facebook page. In the video a father, who also has a child with Down Syndrome, responds to comments he overheard while shopping. The most troubling comment to him was that Down Syndrome is an illness. The father in the video responded “Down Syndrome is literally the most beautiful thing that has happened in my life. It is not an illness. Or even a disability.” Would this father take away his son’s Down Syndrome? Doesn’t sound like it. But Down Syndrome can bring complicated medical issues. Every case is different. Would another parent respond differently? Tricky question.


As I consider these questions, I admit that I am not the same person I was 20 years ago. The essence of who I am has been shaken to the core. I am a type A personality that needs to control everything. Now, I’ve learned I just don’t have the energy to care. I used to think I would be a music professor someday, but that probably won’t happen. I have developed a deepening level of compassion, because I have been shown compassion by so many amazing people we have met on our journey.


Our family has been on two once-in-a-lifetime trips because of Make-A-Wish. We’ve gotten to know people from all over the world because of SEPN1 related myopathy. We’ve met with extremely smart doctors, researchers, and clinicians who want to hear from us and to learn from our experience.


Each year we hold a fundraiser to raise money to support research for SEPN1 related myopathy. In 7 years, we have raised almost $100,000. Every year I am blown away by the generosity of people. Even if they don’t have a lot to give, they give any way.

I am a richer and more complex person because of SEPN1 related myopathy.

So for me, the questions boil down to this.

If I had known then what I know now,

  • Would I have refused to marry Tim?

  • Would I have decided not to have children?

  • Would I be OK living without ever having met Peter and Michael?

Those questions get a hard no.


But . . .

  • Would I give up all the wonderful experiences we have had as a family?

  • Would I give up on the amazing trips we have taken?

  • Would I give up the new friendships we have made?

  • Would I change the core of who my children are?

  • Would I deprive our community the opportunity to learn about disability and diversity?

  • Would I walk away from all of that so that my sons could have been born without SEPN1 related myopathy?

This answer, without a moment’s hesitation, is yes. A thousand times yes!


The reality is that SEPN1 related myopathy is a life threatening condition. Both Peter and Michael regularly deal with physical pain. They endure endless doctors appointments in which many times there are no real answers, just band-aids on symptoms. They face realities that no child should have to face. They are wise beyond their years.


Maybe you don’t feel the same way. And that’s OK.


Tricky questions don’t have easy answers.