by Lauren Fritz
about the author:
Lauren Fritz is the mother of two sons with Duchenne Muscular Dystrophy. She is a fulltime private practice therapist and also cares for her sons.
A Deep, Collective Sorrow
In my work life, I often join people along their journey through grief or trauma. This calling came long before Duchenne entered our worlds.
There is an inherent anxiety at not being able to fix something in death. Working with grief means being willing to let it be here. This is a mammoth task. It means drastic changes in our lifestyles and hearts.
One part of being in the Duchenne community is coming to know other parents and families who travel this journey. This offers a beautiful sense of camaraderie and support.
It also means that when one of our boys or young men dies, we share in a deep, collective sorrow. This has been happening often recently. It leaves a hollow of indescribable loss for the family whose son had died. It leaves a mixture of empathy, fear, compassion, acceptance and dread for those families that share in witnessing the loss.
We are connected.
I think about what words can be offered up at times like these.
This isn’t about the fervent development of research, or the insistence of ever-burning hope. This is something different.
It is about presence.
Presence not to run away metaphorically, on this road. There is something worse than death, and that is a life not well lived. I know the intention, care and persistence that went into the lives of each young man that passes. A communal dance between the person and his caregivers, asking more than either has, and yet being responded to again, and again and again…
These lives – which may be 12 years, or 23, or 49 (and this goes for all of us) – are lives that we strive to live presently. It is not about the length of time we have, in the end. It is about bringing the intention into each new day. About loving each other well, and inviting our boys to develop presence into what brings meaning for them, and for us.
This morning, at 4 am, I got up to turn my son. This is actually one of the most tender parts of my day.
We are both sleepy, and I gently touch his shoulder and tell him I’m going to turn him. I roll his 150 lb. body toward the other side of the bed. I reposition his knees, arms, head, feet, pillows, sleeves and covers in just the way that will make him comfortable. I ask him if this is ok, and he will sleepily say yes, or offer more direction. Then I tell him I’ll see him in the morning, and he says, “I love you, Mom.” I say, “I love you, too.”
This is our task, every day. Not to run from the inevitable. There will be a time when we all are deceased…every one of us. If we try to keep present to this, then we call fill these living spaces with intention, big and small.
Let our lives be well-lived in our intentions with those who are dear. And there is an infinite capacity of those who are dear…
With deep care and love, Lauren. ❤