Hello, son,
As I’ve already told you, the therapist supporting us through this ordeal once told me :
“A tired man can still go far.”
I often repeat this phrase to myself when things get difficult.
But he hadn’t foreseen one thing.
What happens when a tired man meets a tired woman, haha!
With your mom, we’ve been through a turbulent time.
Probably not the first. Probably not the last.
Relationships are among the most complex things life gives us to understand.
But the main thing is elsewhere today:
the storm seems to have passed, and we have learned.
We’ve redistributed roles to prevent everything from falling apart.
I’m now in charge of communication with healthcare services.
Your mom, she watches over you even more.
And believe me, no one watches like a mother!
Your progress this week
Let’s be honest: we’re still struggling to get you to eat.
Every meal is a battle.
Sometimes an hour for a few spoonfuls gained.
We know that every bite is important for your development.
You absolutely must gain weight, as you are at the tolerable limit.
And in the distance, there’s this possibility we want to avoid, that of gastrostomy
(a kind of tube in the stomach).
Tomorrow, your pediatrician is coming. We’ll see.
Last week reminded us of one thing
Your breathing was worse.
You had a fever.
Your saturation has dropped again.
An X-ray showed inflammation in part of your lungs.
Tests suggested a virus.
And that brought us back to that fear we know too well.
Then, slowly, your condition stabilized.
Today, you seem to be doing better.
Because we know how fragile your lungs are, fear is never far away.
We will have to learn to live with it without letting it control our lives.
A difficult, but necessary, balance.
Chronic vs. Future
Your mom and I went to see our friend, the therapist.
He too has been through storms with his daughter, and his words carry particular weight.
He pointed out something essential to us: your condition is chronic and long-term.
There is no finish line.
There’s no break.
It’s been almost nine months that we’ve been moving forward without really stopping.
So, to stay mentally strong, his advice is simple:
Don’t live in the future.
Even less in the past.
Live day by day.
Easy to hear.
Much harder to do.
Your mom and I are entrepreneurs. We live by what we create.
Our driving force has always been dreams.
And dreams look towards tomorrow.
Learning to build for the long term without projecting too far for ourselves…
This is the new balance we must find.
I had printed a vision board of everything we would do together.
I tore it up in a moment of nervousness.
It put more pressure on me than motivation.
So I’m going to try a different way now.
New goal: live each day as a whole life.
Tomorrow, something a little unreal
Thanks to Grandma Michelle and Grandpa Robert, your story will appear in a local newspaper from the region where I grew up: Le Patriote Beaujolais.
We were supposed to return to Beaujolais in 2026 to celebrate my 40th birthday with the ‘conscrits’ (a typical local celebration).
Life had other plans for now.
But my roots are here.
And they have never stopped supporting us, even thousands of kilometers away.
If we accepted this article, it was to make your reality known.
To raise awareness about the RSV virus and the dangers of bronchiolitis in babies.
To shed light on bronchiolitis obliterans, this rare and chronic condition whose existence few people suspect.
And perhaps also so that a family, somewhere, feels a little less alone.
To those discovering us today, welcome, and thank you for being here.
If this story touches you and you wish to walk a part of the journey with us, you too can become a piece of his village:
- write a message of love to Gabriel
- share his story around you by sharing
- follow our daily life, via this blog, Instagram, or Facebook
- join the newsletter (form below) to follow the association’s news
- help us through this ordeal via a donation
Thank you. Truly.
And perhaps one day we will return to live in Beaujolais.
On that day, Gabriel will need to be surrounded.
So, if any healthcare professionals in Beaujolais are reading these lines, know that we would be deeply touched to be able to count on you!
With that, son, I’ll leave you.
Mealtime is approaching, and as often, it’s a small battle we’ll fight together with your mom.
I love you, my little potato!
Dad
