One day, Natacha, Abigaelle’s mother, gave her a necklace with a pendant in the shape of a small key. She explained: “This is the key to your heart. The doctor is going to use it to open it up and fix it.”
How else could she explain to her daughter, who was born with hepatic fibrosis, a heart defect known as tetralogy of Fallot and adrenal insufficiency, and who underwent her first open-heart surgery one month after her birth, everything she would have to go through to stay alive? Giving her a visual to hold on to was a big help.
Behind all of the stories of children facing daunting health challenges are those of their parents, who tap into their own strength to help overcome these ordeals.
They are stories of sacrifice and love. Natacha has put her career and her own interests on hold. Being there for her daughter is what she feels compelled to do. But, of course, there are more difficult times – times when she no longer remembers what things used to be like, before her main focus shifted to giving her daughter a life that is as normal as possible. “I never wanted to cry in front of her. She’s so strong. I want to be strong, too. For her.”
Abigaelle’s mantra is “We do the best we can.” She repeats it to her caregivers, to her parents and to herself. Because, despite her irrepressible spirit, she does not have it easy. Her heart can’t keep up with everything she wants to do. It gets tired faster than she does.
She’d love to sing. She does the best she can. And when she can, two Marc Dupré songs – Du bonheur dans les étoiles and Rester fort – are the ones that are on the tip of her tongue. The lyrics shine some light on the message that Abigaelle tries to share with others. “Il faut bien, dans ce monde, tenir à quelque chose de plus beau, quelque chose pour nos rêves brisés, quelque chose pour nos coeurs épuisés.” (In this world, we have to hold onto something more beautiful, something for our broken dreams, something for our worn-out hearts.) She does the best she can to stay strong in the face of adversity.
As the years go by, and the number of operations rack up, Abigaelle’s scar is starting to look like a tree, with the roots running deep into the ground and the branches reaching out to touch the stars. She and her mother came up with this metaphor. Together, they decided the scar was a tree of life – a tree that would withstand every storm.
There is actually no universal definition for “tree.” The word applies to far too many different types of plants to be able to pin the concept down. But many scientific studies show that, in nature, trees actually help one another. When one kind of tree is sick, others will come to its aid and nourish its roots until it is healthy again.
That’s precisely the role Natacha has embraced: putting herself second, so that her daughter’s roots can thrive and her branches can stretch up toward the light.
When she’s asked about everything she’s doing for her daughter, Natacha answers from the heart, “I’m finding it harder these days not to let my emotions run away with me.” And, once again, Abigaelle reassures her: “We do the best we can, Mom.”
During the season of growth and renewal that is spring, Abigaelle is sure to blossom in many ways. With any luck, you may hear her singing some of the words from her mother’s favourite song, Du bonheur dans les étoiles: “Je ne voudrais pas te ralentir, ni t'empêcher d'être toi.“ (I don’t want to slow you down or stop you from being who you are.)
*The remarks expressed in this article reflect the opinion solely of the author and should not be considered as representative of the CHU Sainte-Justine Foundation.