This wild and precious life
Learning not to judge the value of a person’s life based on how efficient they are
I came across a Mary Oliver poem with the striking final lines, “Tell me, what is it you plan to do/ with your one wild and precious life?”
As we approach World Down Syndrome Day on March 21, these words remind me of my daughter Elyse, and where we’ve arrived to in her first five years of life. In my first five years of parenting her.
Elyse was born with Down syndrome — an irrevocable factor in the equation of her life and mine, but not one that adequately defines who she is, or predicts who she will become.
Every child’s life is largely dictated by their parents. As the crossing guards of our children’s existence, we direct traffic, try to cross them safely, and see them to the other side. Every time we step foot on that road, we take a chance. Parenting is risky business.
In our daily lives, Elyse walks to school, and when we cross the busy intersection — though I’m sure it’s against protocol — one of our beloved crossing guards holds her hand, while the other blows her whistle, and holds up the red sign to keep the cars at bay. There was a time I was reluctant to see my daughter receive extra help, or special attention, but now I see there’s a balance.
What is considered fair to meet the needs of one child is not necessarily the same or equal to meet the needs of another. I will point out the obvious: every child has needs. Elyse never asks us to stay with her at bedtime — my eldest needs a nightlight and complains of cobras in her bed (our bed is apparently cobra-free); Elyse no longer asks me to pick her up — my youngest regularly reaches her arms up high.
Pace. Elyse’s natural speed requires great patience on my part, as I’m prone to rushing. When I’m getting three kids in winter gear out the door, it’s often Elyse lagging behind — putting off getting dressed. If she senses my frustration, the process is further delayed.
Patience, and three pieces of advice for living a happy life: be kind, be kind, be kind. I’m learning not to
judge the value of a person’s life based on how efficient they are.
Elyse can dress quickly. When she wants to get outside to play in the fresh powdered snow her snow pants and coat go on, and she’s out the door. Motivation, patience, and the right support; kindness — these are the lessons of Elyse’s first five years. The same lessons of parenting any child; remembering that what’s fair does not always mean the same or equal.
While the pace of my children’s development differs, the one area they are all the same is in their need and capacity for love. I shower Elyse with kisses and she dissolves into giggles. At five, she never tires of that game.
While I place the highest value on real-life experiences; structured learning environments, such as an inclusive classroom, and therapy sessions, have been equally important in our daughter’s development. I’ve watched Elyse reach her goals under the care of professionals, and seen the smile on her face. Let that smile be your judge.
My philosophy, when it’s come to raising a child with Down syndrome — when it comes to raising any child — is the deepest learning and greatest therapy takes place in daily life. Physical therapy is climbing on the
play structure. Speech therapy is repeating your big sister’s joke; occupational therapy is getting dressed to go outside, and cutting out a Valentine’s heart for grandma.
With anything I do with my girls, while their experience and interpretation is uniquely their own, my aim is the same: to engage and expose them to this wild and precious life.
I do so with confidence and a weighted heart; knowing they will one day step away safely onto the curb of the other side, and make it their own. The decisions of their life become their choice, as they were once mine.
So, my dear Elyse, take my hand, and show me: what is it you plan to do with your one wild and precious life?
World Down Syndrome Day is celebrated internationally on March 21. Individuals with Down syndrome possess three copies of the 21st chromosome, making the date, 3/21, significant. Please visit the Canadian Down Syndrome Society’s website, www.cdss.ca, and your local Down syndrome association for more information.