Common Connection

Sometimes, being a parent to a child who isn’t neurotypical is lonely.

Sometimes, you can feel isolated in your thoughts and emotions.

That’s not always the case.

Having a child with Down syndrome is a ticket into one of the most incredible and supportive communities.

It’s unbelievable how that extra chromosome is able to connect families around the globe.

When we have questions about what to expect after a diagnosis, this community is there.

When we wonder what resources might be available for our kids, this community is there.

When we feel overwhelmed, and just need SOMEONE who understands, this community is there.

We are a global community.

We are family.

We truly are The Lucky Few.

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In order of appearance, our global community members are:

Ava, 2.5 @mrskyliesamson
Ariana, 3
Charlie and Milo, 5 @chucklesandmeatloaf
Emma, 2 @the.sassmcleans
Evalyn, 8 months @extraevalyn
Gavin, 6 @cwoods1212
Israel, 17 months @lor_ee @les_ismore9
Eli, 2 @duke.party.of.6
Ariyah, 18 months @upsidedownmomto
Caleb, 12 @karenjp0915
Jackson, 2 @michelecasal
Norah, 8 months @chodaks
Micah, 6 @lifewithmicah
Sofia, 3.5 @mvzlettysol
Ivy, 2 @myincredibleivy
Grayson, 5 @hugedork
Matthew, 21 @inthisopenbook
Olivia, 5 @ashleycharlton
Evorly, 11 months @kay_boin
Braelah, 16 months @beautifulbraelah
Genevieve, 17 months @theupsidedownfamily
Connor, 7 @basketsofloveds
Ava and Cora, 2 @raynisivley
Joshua, 24 @karebearmac8
Addison, 3 @addisonremy @pattysneddon
Christian, 6 @pdotanderson
Telmo, 19 months @telmucho
Jordan Grace, 6 @mommytor_az
Frankie, 3 @321ofakind
Lochlyn, 22 months @walkwithloch
Gabi, 3 @achown
Isla, 2.5
Harper, 15 months @stronglikeharper
Robert, 6 @luckymama.ca
Abel, 18 @abel.the.lionking
Thomas, 2.5 @jessicapollmanselden
Lili, 3 @courtkauai
Ryann, 2 @rys_wonderful_journey
Miah, 6 @sandra_alnakkash

Changer le monde

I wrote “Croup, Care & Comfort” a couple of weeks ago. It initially started off as a way for me to process what had happened to Robert – and putting “pen to paper” so to speak, was an ideal way for me to process.

Je l’ai écrit en anglais pour que mes mots et émotions puissent toucher le grand public. Ma famille parle le français, mais mon cercle d’amis est composé des franco et des anglophones. Je voulais toucher le plus de personnes possible. En plus, je trouve ma voix plus facilement en anglais.

Today I had a call with a woman who is working on awareness in the health community. She is seeking to make the region we live in an area that recognizes the importance of French services. We had a nice, brief chat about how Robert’s story and experience at the hospital could help shape and train future health care employers on the importance of offering services in French. Not only in hospitals, but in nursing homes, home care providers and outreach employers.

What happens if (when) Robert has early onset Alzheimer’s? It’s an affliction that he is more susceptible to having. People who suffer from Alzheimer’s often revert back to their mother tongue. While Robert will certainly be raised bilingual, will he revert to French in that situation? It is his mother tongue after all… And if he does, will there be health care providers around to treat him with the dignity and respect he deserves?

It’s difficult to imagine my sweet, funny, charming 5 year old as an old man. But one day he will be an old man, and he (like most of us) will require care.

Photo by Matthias Zomer on Pexels.com

I want him to be able to access services that make him feel that he is a valued person. One of the ways he will be shown his value is by accessing care in French. Even if the person who is assisting him in care has only a very basic knowledge of French, being able to communicate with him is going to be of utmost importance. It will help him feel comfortable and less afraid. Even thinking about it helps me feel more comfortable and less afraid for him.

So when this woman asked me if she could share Robert’s story in a training she is offering, I was happy to say yes. I want people to hear how their actions can have a big impact. When the doctor began to speak with Robert in French, I could feel his stress level decrease. I know my own stress level decreased. Afterwards, I spoke with some nurses and the respiratory technician. They told me they didn’t even know the Resident could speak French! What an eye opening experience for everyone that night!

Small actions – like asking my son (in French) how his day was – can have ripple effects and become something greater. This small action is allowing us to advocate for Robert in new and different ways.

Robert, tu changes le monde.