The family of the extraordinary Marcel in full force.
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Carole Deschamps
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“A message to get across.
»Carole Deschamps is the mother of Marcel, suffering from Down's syndrome, and Basile.
On Facebook and Instagram, she recounts her family life and has published a testimonial book,
L'Extraordinaire Marcel
(ed. Flammarion).
Before having your children, were you already an Instagrammer?
Absolutely not !
On the contrary, we found it ridiculous to tell about his life on the networks.
Now that I'm a mom, I'm like everyone else, I want to show them off because they are beautiful.
But above all we have a message to get across.
With this account, the idea is to show how life is organized with a child with Down's syndrome, that we are an ordinary family.
See this post on Instagram
A post shared by Marcel, Basile, papa & mum (@lextraordinairemarcel)
An ordinary family with an extraordinary child?
Exactly.
We tell Marcel's daily life (in the first person, because it is him that I make speak), with all that that contains of difficult too.
We are normal parents, sometimes exhausted, nervous.
Not all times are rosy, I'm not gonna lie.
I also fight against perfect photos and filters.
Did the need to share your moments with him arise instantly?
From the birth of Marcel, we wondered how to communicate.
When I created the Facebook page, Marcel was 4 months old.
It was for March 21, Down Syndrome Day, a day in which we wear mismatched socks to show the difference.
The enthusiasm was such that we kept the page and opened the Instagram account.
Five years ago, few of us did this, but today there are dozens of accounts like ours.
Is this a sign that the subject is tackled more easily today?
It evolves little by little, but it is very fresh.
In September, the broadcast [on M6] of the TV movie Apprendre à t'aimer, which has been viewed millions of times, also contributed.
Putting faces on our stories, on these children, is extremely important.
This is also why I wanted to testify to our experience in L'Extraordinaire Marcel.
Do you receive a lot of messages?
On Instagram, it's huge.
I already had to delete story messages because we were getting almost 500 a day and couldn't handle this flow.
Those who write to us ask us about concrete things relating to Down's syndrome.
Others thank us, because what we are saying reassures them.
Some have children with other disabilities and wonder how to overcome this.
How is Marcel doing today?
Very well.
He turns 5 this month and is in a large kindergarten section, with the help of an AESH [accompanying pupils with disabilities] twelve hours a week.
Trisomy 21 is a well-managed syndrome with few unknowns.
It's a bit like the Rolls-Royce of handicap!
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