What does it mean to have agency over our children’s lives? And what happens when that agency is threatened by a life-limiting illness that is beyond our control? How do we respond and who can help us? And what does any of this have to do with dandelions?
As parents of children who are minors, I think we are entitled to have a sense of agency over our children’s lives, at least to the extent that we devote ourselves to their safety, health and well-being and hope this devotion will pay off. When our children are born, we envision years of nurturing them, teaching them, guiding them, orienting them to have a life of success and happiness. But as every parent of a child with a life-limiting illness knows, this vision is blown to smithereens when we receive the diagnosis and learn that our child will likely not live to adulthood. Suddenly, our goals for our child must shift from a long-lifetime of success and happiness to a significantly shorter lifetime of comfort, happiness and quality time with family.
Our sense of agency must shift also: no longer is it about choosing schools, after-school activities, summer programs. Now it’s about holding firm at the helm of a ship sailing unchartered waters and navigating a new and intimidating medical system.
This holding firm business is incredibly difficult as what do most of us parents know about disease and medicine? Typically, not much. So how do we maintain a sense of agency when we feel at the mercy of doctors speaking a new language? Isn’t the illness in control? And isn’t it the doctors who are best equipped to control the illness? Where is there room for us parents to assert some control?
During my daughter Cameron’s 18-months between diagnosis and death, I knew that most of what was happening to her was completely out of our control and that the scope of our agency was limited. Her illness had a clear trajectory down down down and she followed that trajectory fairly predictably. There were no treatments or therapies available to us. The only control my husband and I had, at each next phase of her decline, was in defining what we wanted for Cameron’s quality of life and in figuring out which choices we were going to make in pursuit of that quality: G-Tube or no G-Tube? Go to the hospital for the grand-mal seizure or treat her at home with rectal valium? Hospitalize her for the second pneumonia or keep her at home? Our agency lay in making these decisions and then throwing ourselves into keeping her as comfortable as possible every day she had with us. With the guidance of our pediatrician—who practiced palliative care and helped us identify our care goals and values so that we had a framework from which to make these difficult decisions—we got to decide the flow of her days, the feel of these days, and ultimately when the quality of these days was no longer acceptable for her. There was a lot of agency in this.
Within this palliative care framework, I believe I was as empowered as a parent could possibly be in my situation. Of course, at the time, it wasn’t entirely enough. Which is why, in the last month of her life, you could find me outside in our humble backyard, weeding dandelions. I was obsessed. While friends paid visits to Cameron, almost like a pilgrimage, I’d be outside in the yard doing my own version of ‘out out damn spot!’ I admit that at the time I had no awareness whatsoever that the lawn had become a proxy for my daughter and that I was directing my sense of powerlessness onto it—that I was saying, “I can’t eradicate the disease that is taking my daughter from me, but I can sure-as-hell eradicate these dandelions and help this lawn!”
This is really the only thing I regret about the choices I made around Cameron’s life. I don’t regret that we didn’t give her a G-tube. I don’t regret that I continued to work for over a year after her diagnosis. I don’t regret that we didn’t treat her third pneumonia. But I do regret that I chose to spend several hours every day in the back yard, away from her, digging out weeds.
I am grateful that the scale of my regret is so small. Deeply deeply grateful. Because of the guidance we received from our pediatrician and the therapy we received from our grief counselor and the courage we gained from learning from other parents whose children had gone before (especially my nephew Hayden), my husband and I can reflect upon Cameron’s journey with a sense of peace. We did a good job. Cameron had a good life. And we’re OK. But I still hate dandelions.