Parents : Why are so many people following you on social media?
Lextraordinairemarcel :
The first message I posted in 2016 hit the nail on the head. No doubt because Marcel spoke to the “I”. And then his face in the photos must have played. And also because many families affected by disability gain energy thanks to our blog. The more we are seen, the more we raise awareness of these issues. Negative comments are extremely rare.
What does it change to be the parent of a child with a disability on a daily basis?
We must not believe that it is “only happiness” as our photos suggest. Our daily life is organized a lot around medical appointments. Marcel has a minimum of three per week – psychomotor therapist, physiotherapist, speech therapist (we communicate mainly with signs), plus all the ophthalmologist, dentist, ENT checks… Of course, every day, we put things into perspective, Marcel is a funny little boy, in good shape. There are situations much more complicated than ours …
When the diagnosis of Down’s syndrome was made, what was your reaction?
The maternity team did not immediately inform us. Sylvain and I had doubts from the moment we discovered Marcel’s face, but we waited for someone to dispel our fears. When the pediatrician told us about the test, the world collapsed around us. My pregnancy had gone well, there was no suspicion of Down’s syndrome. But Marcel was our child and there was no other choice for us than to face reality. After all, we hadn’t known another way to become a parent. It was when Basile was born that we retrospectively became aware of the complexity of the first months with Marcel. Medicalization. Concern for the future.
Two boys quite close together, a house, a job, the networks… but what is your secret?
I admit that it is not easy, even when working at 80%! Moreover, I decided to stop (I am in charge of customers) to devote myself to my children and the management of the blog and the networks. But I’m also lucky to have my parents who don’t live too far away and who help us when needed. Not to mention the Trisomy 21 association in Ille-et-Vilaine.
Talking with other families who are going through the same thing is doing a lot of good and has allowed us to make great encounters. And finally, we have the blog. I have to adopt a positive tone, it’s a form of therapy!
How did you experience the arrival of Basil?
The onset of pregnancy was horribly stressful. When I got the test results for Down’s syndrome, I was in a dressing room hesitant to buy an overpriced coat. But I was so happy that I took it! We have
was afraid that Basil would not find his place, but he has a strong character. Now we are also the parents of an ordinary little boy. His motor development seems hyper-rapid to us. With his big brother, they are already very close friends, Marcel gives him nicknames.
What are your medium-term projects?
We would like to settle in Morbihan (for the moment, we live near Rennes), but it’s complicated to change schools when Marcel has integrated well here. He’s having a great day, everyone knows and appreciates him. Of course, he’s not following the same progression as the others, but he’s doing well. The important thing in life is not to succeed, but to learn.
Interview by Katrin Acou-Bouaziz