As a psychiatrist, mother, and writer, I do a lot of “talking” in one form or another. A few months ago, however, I found myself in a moment of speechlessness, a true loss for words. In fact, my very breath was taken from me.
In that moment, I learned that the only son of a dear friend and colleague, had been diagnosed with Duchenne Muscular Dystrophy. Duchenne Muscular Dystrophy is a devastating genetic disorder resulting in profound muscle weakness. It is the most common lethal muscle disorder in children, and affects approximately 300,000 boys around the world.
How does one find the words?
In my heart, I believe that one child, any child, belongs to all of us. It is our collective responsibility and privilege to raise our children. It is our collective duty to care for our children, protect them, and keep them healthy and safe. Our own children, the children we know and don’t know, the children we can see and the children we cannot see.
For me personally, to know that any child amongst us is suffering, ill, or in pain, feels like an assault to my spirit. Not because these children are victims or in need of our sympathy. But rather because I am a physician and a mother, and those parts of me would like to believe that all children have the right to health and safety.
When I was growing up, two of my best friends were diagnosed with osteosarcoma, a malignant cancer of the bones. I loved them deeply, and losing them brought my own life into clear, sharp perspective. In every cell of my body, I learned what only loss, or the anticipation of loss, can teach you. That although we live each day as if we will live forever, our time together is brief.
We must find a way to let the small stuff go and focus on what truly matters most. To me, what matters most is prioritizing how we love and how we serve. Living any other way feels wasteful. It’s not easy, because we become lost in our habitual patterns. But we must continue to remind ourselves and each other. Every. Single. Day.
I can’t think of anything more important.
This weekend, my friend posted a poignant video of his son on Youtube to raise awareness and support for Duchenne Muscular Dystrophy. The least I can do for his family is share it here and help in my own little way. I watched this video last night at 1:30 in the morning, in the midst of a bout of insomnia, and was struck by the profound beauty of this little boy. Here was one more reminder of our need to live each moment fully, together, with our whole hearts.
There is a great deal of research ongoing to try and find a cure for this terrible disease. You can visit www.cureduchenne.com to learn more. Together, let’s preserve the hope and belief that answers will be found and precious lives will be saved.
So today, and in the week ahead, I invite you to join me in reflecting on what this video brought up for me inside. How can we all continue to care in the best ways possible for all of our children? And are we making the most of our time here together?
With gratitude, Monisha