Learning How to Parent Through the Traumas Caused by DMD
During Mass on Sunday, the priest talked about an aspect of faith that acts as an infusion for the soul. As a mother of three sons with Duchenne muscular dystrophy (DMD), I loved the analogy and was grateful because I thought it was something my sons would understand.
All three of my sons with DMD get infusions every six months to help keep their bones strong. Max, my oldest, and Charlie, my youngest, both had vertebral fractures, and Rowen, my middle son with DMD, broke his fibula. That made each of them eligible for intravenous bisphosphonate therapy.
As I was sitting at church, surrounded by my family, the boys in wheelchairs on either end of the pew, I was thinking about the infusions, and I relived the moment Rowen fell and broke his leg. Thinking about why the boys get infusions made the memory resurface.
Sometimes, as parents of boys with DMD, I think we focus so much on what our sons are experiencing that we don’t recognize the little traumas we experience watching our sons live through the disease.
When Rowen broke his leg, I went right into super-mom mode. Like a drill sergeant, I started barking out commands to my husband, Jason, and my unaffected son, Chance.
We had him in the van and on the way to the hospital within minutes. I had information pulled up on my phone to share with the physicians we would encounter in the ER.
In the days and weeks that followed, our life centered around Rowen as we learned how to have a nonambulatory son. We had to learn how to do transfers, how to bathe him, and how to help him in the bathroom. We balanced that with trying to get him back on his feet as fast as possible. But despite his excellent work ethic and our parental dedication, we were never able to accomplish this.
As a mother, I keep moving on to the next thing, never really processing what I experienced. My beautiful son was walking in the grass, and his leg broke under the weight of his own body, causing him to fall.
I was watching him play with his siblings in our backyard when I heard the pop. Immediately, I knew what had happened and the uphill battle he faced — even if, God forbid, he didn’t experience fat embolism syndrome or another setback. I slept next to him the night after, checking and checking again that he was breathing, so afraid that he would have a fatty embolism, knowing that it would be a fight for his life if he did.
It was a trauma. It was traumatic for Rowen. It was traumatic for me. I immediately acknowledged how the incident changed Rowen’s life, but it was months before I realized its impact on my life.
It is not the only trauma I’ve experienced as a mother of boys with Duchenne. I’ve always thought that diagnosis was a life-changing and traumatic event. One morning I had a beautiful, perfectly healthy son, and before the day was over, my son was dying from an incurable, genetic, neuromuscular disease.
My world crashed around me that day, and on the days I realized two more of my children faced the same fate. It has happened repeatedly as the disease has progressed through my boys’ bodies. Trauma surfaced the last time they could go up stairs independently and the last time I could drop them off someplace without their wheelchair.
The crazy thing about Duchenne is that it’s not only the things you have experienced that terrorize you, but also the thing we dread, which is inevitable without a cure: Our sons will succumb to this disease. We are forced to anticipate the trauma accompanying the end of life.
I’ve thought a lot about this over the years. How do we deal with the trauma we experience as parents?
First, we need to recognize that the hard things we live through can be traumatic.
Second, we need to deal with it. Writing is a huge part of how I deal with the trauma. Through my blog, social media pages, and this column, I can work through many experiences. At times, I’ve recognized that I need help with specific situations and talked with a mental health professional.
We will face hard things as parents, but if we can work through them and find small paths to healing, then we can help our sons do the same. And if we take care of ourselves, we can better care for our boys.
Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
Thank you so much for your columns, Betty.
Thank you Joe!
What a moving and beautifully written blog! I'm a Health Economist focusing on treatments for DMD, SMA and other rare neuromuscular diseases. My aim is to keep highlighting the challenges families face, much in the way you've done, and also to find data to support the economics of these diseases, which are not all that well highlighted.
I'm based in Europe and am trying to better understand the financial support for families in the USA, recognising that each state, in fact each family case, is very individual. I believe that this makes it all the harder to describe the economics of these diseases. I'd really welcome your insights on this topic. And, if you know of any parent who would like to share any details of the federal &/ state financial support they receive, I would love to hear from you and them. All data will be handled with confidence and anonymously. But I really believe that what I am hoping to achieve will help families in the long run. Feel free to contact me: [email protected]