An Important Life Lesson from a Dragon Mom
A heartwrenching, yet profound article came out recently in the New York Times about a woman, Emily Rapp, author of Poster Child: A Memoir, whose son was diagnosed with a terminal illness, Tay Sachs disease. The article explores how she has come to terms with it and the life lessons she to teach the rest of us
MY son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him.
I want to stop here, before the dreadful hitch: my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into a vegetative state. He’ll become paralyzed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure.
How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?
Depressing? Sure. But not without wisdom…
The wisdom here is how all of us are on a constant treadmill trying to achieve enroute to some perceived better life. Meanwhile the moments of the day are just going on by. I catch it with my own son when I’m busy. Rushing to get him breakfast, dressed, and off to preschool so I can get to work. What am I missing out on here?
That’s the burning question. Yes, Emily’s situation is a bit different, she has no future with Ronan to look forward to in the years to come, so she’s able to indulge a bit more in the present moment as the future isn’t even an option.
In one part of the article Emily says, “Today Ronan is alive and his breath smells like sweet rice.” The fact is none of us can be assured what the next moment brings, we all have a terminal situation that’s called life. So why not take some lessons from Emily and Ronan and learn how to savor what it is we have here.
A few weeks ago I was putting my son to bed and my mind was buzzing with all of the things I had to get done once he was asleep. Something happened where I was thrust in a space of awareness, realizing that this time that I have with him right now is terminal, this age is impermanent and I only have moments to be with him in it.
What was frustration turned into a sacred moment, savoring the sweetness and love that was there.
May we all take a page out of Emily and Ronan’s story book and do the same with the moments of our lives.
As always, please share your thoughts, stories and questions below. Your interaction creates a living wisdom for us all to benefit from.