When your child is diagnosed with Tay-Sachs, what should you do? How should you cope?
A baby with Tay-Sachs disease appears healthy at birth and seems to be developing normally for a few months. Symptoms generally appear by six months of age. While symptoms vary from one child to the next, there is always a slowing down of development. Gradually, Tay-Sachs children lose motor skills and mental functions. Over time, the child becomes blind, deaf, mentally retarded, paralyzed and non-responsive to the environment. Tay-Sachs children usually die by age five.
What does being a parent mean when your baby is dying? How do you parent a child with no future?
Wrapping my head around these thoughts makes me break—yanking the heartstrings, churning my stomach, and welling tears in my eyes.
All this, and then I see the words “dragon parenting” in this article outlining the emotional journey of little Ronan, 9-months-old, and his parents. Their story of Ronan’s shocking diagnosis of Tay-Sachs and their pain in dealing with their young son’s prognosis is enough to make anyone reflect on gratitude, blessings, and empathy.
Receiving news about any arduous diagnosis is difficult. I’d be a grief-stricken parent—stunned by the diagnosis. I couldn’t shift from grief and grasp any other emotion immediately. I might think about worst-case scenarios and then come back up for air.
Honestly, I’m at a loss. I don’t know what I would do. And so, I dove into google and came across much-needed, in-depth details about “dragon parenting,” and I couldn’t have said it better myself.
The essay in the New York Times is called “Notes from a Dragon Mom.” It is written by the mother of a child with Tay-Sachs disease, and it is about what it’s like to parent a terminally ill child, “We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell.”
People (that’s both you, me, and all the readers) will react differently to this—there is no right or wrong way to react.
But this momma can only muster six words:
“Much love, dragon parents. Much love.”