by Stephen Marchesani
about the author:
Stephen Marchesani has 2 boys. Vincent is 13. Lance is 10. Lance has Duchenne Muscular Dystrophy. Stephen and his amazing wife, Leah, have been married for almost 20 years. Stephen was a speaker at the 2019 PPMD conference, and also writes his own blog.
Humans & Heroes
I have been thinking about this for a good while.
Our son was diagnosed with Duchenne at a routine “wellness” exam before kindergarten. The doctor saw his calves and sent us to an orthopedist. Knowing what I know now, that makes the doctor a bit of a moron, but whatever.
The orthopedist had Lance do the Gower test and looked it up on google right in front of my wife. She absently said, “I’m pretty sure he has Duchenne Muscular Dystrophy.” Boom, in a moment our lives were forever altered.
5 years later and I’m still trying to figure out what it means to have a child with a disease like this. Still, basically, no idea. However, I have developed other ideas.
I have always spent a lot of time in my head. As long as I can remember I have lived in my head, be it fantasy to escape, stories to entertain, horrid scenarios to punish those who wronged me, etc. There has always been a constant flow of ideas in a myriad of forms in my head wrestling for real estate.
As part of this I have also become a keen observer and listener. It’s amazing what you can learn about the human condition by just paying attention to what people do and say around you. It’s also amazing to me what people will do and say to assuage guilt. This brings me to today’s topic.
Anyone who is reading this and has a child with Duchenne has heard some version of the following statements.
- “You are so strong to go on every day. If this happened to me or our family, it would crush me.”
- “I have so much respect for you and what you are doing for your family.”
- “You are a hero with all that you do and sacrifice to keep going.”
I could go on for an hour listing the types of platitudes people will say.
Well, first, thank you for maybe even believing these sentiments. But frankly, we are the farthest thing from heroes or strong. I will say this again, we are not strong, and we are not heroes.
When people think of heroes and strength they think of mythical people in literature or entertainment that overcome odds and do things of which we can’t conceive. They save a person, a country, etc. They find these heroes have the ability to overcome all odds and to do something amazing.
Yeah, that is not what a parent of a child or children with Duchenne is.
Frankly, to refer to us as heroes diminishes our humanity. By calling us heroes or strong you are allowing yourself to go to sleep with the comfort of knowing you don’t have to help. I mean, heroes don’t need help. They don’t need anything, that’s what makes them heroes.
I can tell you unequivocally that we need help. We need help every hour of every day. We need it from family, friends, or strangers. It can come in any form. Sometimes it is to just be acknowledged in a text message that we entered your thoughts.
Most of us live on an island as we go through the life of a caregiver of someone with Duchenne. The island gets smaller and smaller the older the child gets, and the circle of support shrinks with it. When your island shrinks you start to lose your identity of who you are in the world beyond being a caregiver of a child with a terminal incurable disease.
When the people in your life stop showing up and staying in touch the memories you have of life before this fade. There is no one to share them with and no new experiences are being gained. Your life becomes “just” a caregiver. Who you were before ceases to exist without people coming to you and reminding you who you are.
The most frustrating thing is that people, I believe, want to help. I don’t mean to make it sound like everyone is evil and there is no love for me and my family. That is actually quite far from the truth.
I believe that the people who matter have great consternation about what we are going through and what they can possibly do. But they feel as if they don’t have the right words or know some large scale proof of how much they care, so what is the point. They fundamentally can’t fix what’s broken and that makes them feel worthless regarding our situation.
Well, here is some honesty, we can’t fix what’s broken either. The difference is we have no choice. It isn’t about our strength or heroism. It’s about being a human being. It is about the life you have is the life you have, and you do the best you can to find moments of joy and laughter. As I was raised, that is what life is supposed to be. There is nothing heroic in that pursuit.
When our first son died of an accident I had my first glimpse of what courage is in a situation with no rules or understanding of what to do.
Courage to me is the ability to know you can’t help someone or fix what is wrong, but you put your discomfort aside and you sit with them, even in silence. These are not universal truths, but I have come to recognize the patterns through the last 20+ years of shocking, sudden hardships, and long-term challenges.
I never question the love people have for us. I am writing this in the hope that it will spur action before they discover that it’s been too long, and it becomes so much harder the greater the time between connections. No one ever suffered from being loved too much.
But if the people who need it, don’t get to feel that love, is it really there at all?
The day after I wrote this I was called into the principal’s office when dropping off Lance. She said, “You told us about the van available. We want to help. Can we do a GoFundMe for Lance, for you?”
I didn’t know what to say. I accepted, even though it goes against my principles to accept charity. Within 12 hours of it posting we had the money to buy the van and change our lives.
While I watched the numbers change and continue to go up beyond what we even needed something occurred to me. I was reflecting on this blog and it occurred to me there was something I had been missing, maybe been missing for years.
- What if I am a primary limiting factor in the help I claim I need?
- Maybe it is completely unfair to expect help as if anyone in my circle actually understands the struggles we go through every day.
- Maybe it was just the underlying bitterness of this disease that was causing me to distance myself from others, just as much, if not more, than I felt they were distancing from me.
- Maybe asking for help in specific ways and understanding it isn’t a sign of weakness or desperation.
- Maybe I was seeing myself as a hero and help would diminish that.
- Maybe the world isn’t as jaded as I painted it.
- Maybe there is hope and community far more than I expected.
Maybe I can do this.