More than just mismatched socks

March 21: World Down Syndrome Day. Every other day of the year: the truth of a parent doing his best with the little support & resources at his disposal.

By: Sylvia Tessier

Yes, the cause is considered by a majority. We smile politely at the difference, without really understanding the issues involved. Working in close proximity to a colleague directly affected by this reality, the situation is quite different.

For the past 3 years, our e-commerce manager Sabrina has been juggling a number of challenges for her little Julia. Sabrina has many challenges, questions and fears. With infinite generosity, she has agreed to share her story with you, so that you can better understand the depth of a diagnosis & the quest for a better life for her child.

Receiving the news

While some people have several weeks to mentally prepare for such a shock, this was not the case for Sabrina. In fact, it was only 24 hours after the birth, following a few "Oh, she's got a little nose...", "Oh, she's got little ears...", "Oh, this! & "Oh this!" that she realized something was wrong. When she receives the hospital staff's explanation of her baby's condition, her brain, heart & whole body go into "protection" mode. What should she do? What can she do? And how? That's what Sabrina is all about - a reactive, pragmatic girl who's constantly synthesizing solutions.

The gaze of others

Is it possible to assimilate the unknown? It has to be, she tells herself. Highly resilient, she suspects Julia chose her specifically for this ability. Not everyone can roll up their sleeves and be positive & face whatever tomorrow may bring. The only fragile point for her? People's perception. Although curious eyes are everywhere, not all glances are negative. Curiosity, happiness, unease, we don't always know what to say, but the urge to look at this adorable little girl is more persistent than the rest.

"Ask your questions, we'll be happy to answer because acceptance starts first with understanding."

Constant dedication & commitment

Since children with Down's syndrome have to work 2 to 3 times harder to learn everyday tasks, it's not surprising that perseverance is one of their first skills. They are also children whose health is more precarious; a simple cold can turn into pneumonia in the blink of an eye. In addition to infections, medical appointments are multiplying and require demanding regularity. For Julia, ENT, audiology, dysphagia clinic, physio, ergo, speech therapy and pediatrics are all called upon to dance to keep her development on track. Specialists are few and far between, and despite all the mitigating factors, Sabrina is still diving without a buoy in the stormy sea that is holding back her daughter.

Developing your priorities

There are many lessons to be learned. A vision centered on love, then on the mutual support that follows when you're privileged to have an employer who shares the same precious values as you. Among these, it's the strength of the heart that shines through. Julia is so affectionate, pure & curious! She wants to learn & do like everyone else, because she can. There's a lot of laughter at home. Magical too. Household chores turn into games, or suffer, because in the end what counts is the health & well-being of her children. We'll have time to clean up later, won't we?

Promoting integration and offering support at every stage of the life of people with Down's syndrome, from childhood to retirement, is essential. A valued, fully participative citizen - this is the convincing maxim of RT21 (Regroupement pour la Trisomie 21). Because as has already been so wonderfully said: you can walk just as well & far with mismatched socks.

If only more people would believe & get involved.

Julia didn't inherit an extra chromosome with her condition, oh no. She was gifted with an extra heart, that's what. 🎗💛