There are perfect moments. I’m watching the waves crashing to shore with a clear blue sky above. The white sandy beach stretches on and on, and at this moment I have everything, I’m in paradise. My mind is still and I am deeply aware. I focus on my relaxed breath, in and out, in and out, and I feel grateful, calm and peaceful.
Having a son who suffers from Duchenne muscular dystrophy is quite the ride. It tests your very nature, your patience, your coping skills, and your relationships, who you really are and what is truly your essence. We all go through the journey of Duchenne in our own unique way. And this is mine.
I have three children. They are each other’s best friend. We are all very close. Dusty was diagnosed with Duchenne muscular dystrophy in 1998 at age six, Lucas was four. The diagnosis was harsh and the reality of the progression of this disease was the worst thing I had ever known or experienced. It was going to be a steady progression of his body dying, but his mind continuing on a normal path. Our most precious, perfect child was trapped in a body that was born without a very important gene called dystrophin, crucial for muscle growth; that was going to steal his life away, bit by bit, month by month, year by year. Boys rarely live into their 20’s, and some die much younger.
That was a tough few days to get through. It was a nightmare that I could not awake from. All I could see was a perfect child, happy and sweet, and to think that he would have to endure so much suffering was the most difficult thing to face. I saw his caring younger brother, so innocent in all of this, and how this would deeply affect his life. And I looked at his father, having suffered the loss of his own father at an early tender age. I looked at myself, and realized how terrible, how awful, how can I cope through this, what was I to do?
I immersed myself in the present, after all, even though everything had changed, nothing in fact had at that moment. I wanted to give Dusty the best life possible, filled with love, laughter, and adventure. My dream was to bless the boys with a sister, and that dream came true with the birth of my angel Gabriella in 1999.
Life may not always be perfect, but there are absolutely perfect moments. Now that Dusty is 17, I am having more of those perfect moments. I realize that these days are my best days, because we are all together. I am making the very best of these moments with him.
The challenge with Duchenne is to be firmly rooted in the present, and from that vantage point, to plan and think of the future, but not to be too attached to that. The very nature of Duchenne requires one to keep a flexible and very open mind. To look into the future of Duchenne is frightening. It is full of pain, loss and heartache. The present moment contains all the joy and peace we need.
This sounds simplistic, but why should life be so hard? It doesn’t have to be. We are designed to be happy. It all comes down to our minds and what and how we think. In Duchenne, we cannot change our circumstance, but we sure can change the way we think about it. If we are overwhelmed, we may need to take a look at what we need to simplify in our lives.
There have been many ups and downs along the way on this Duchenne journey. Physically, everything has been stolen from him: From when Dusty stopped walking at age eight, and began using a power wheelchair full-time; to when he could no longer raise his arm at age 11 to brush his hair or to give a hug; from when he began having scoliosis, and having breathing and heart issues; to being in a paralyzed-like state except for his hands (and this too will be stolen from him). During all of these transitions, his mind is not affected. Dusty’s mind is full of dreams and ideas and adventures. His mind is powerful, brilliant. In this way, he has been my greatest teacher. I am honored to be at his side throughout, sharing this journey with him. I am graced by his presence.
There was nothing anyone could say or do to make things better. This was a journey I knew I had to “feel” and make sense of by myself. I realized that the answers would never come from the outside, but only from within. I have always been a self-reflective person who thinks deeply, usually too deeply! I was beginning to realize that the only way through this was to arrive at a place of acceptance and peace while negotiating my way through a never-ending maze of defeat, and harsh reality. It really was and is a process, and perhaps it has taken me 10 years to figure how to reconcile this.