Caroline Boudet is mother to 4-month-old Louise, who has Down syndrome. Her Facebook post about her daughter has gone viral this week. (Photo: Caroline Boudet/Facebook)
A mother’s Facebook post, about what to say — and what not to say — to parents whose children have Down syndrome has taken the Internet by storm this week.
Caroline Boudet’s four-month-old daughter, Louise, has Down syndrome. On Monday morning, the 36-year-old mom, who lives in a suburb of Paris, returned home from a disheartening doctor’s appointment with her little girl. “In that one hour, I heard the kind of sentences about Louise that I’ve gotten used to hearing, but this time, it was too much,” Boudet tells Yahoo Parenting. Like a comment from a doctor who, after seeing Louise, said “it’s a little Down’s baby” as if Louise wasn’t a person sitting right there, Boudet explains. She confronts similar comments all the time, but says that when they come from doctors they are especially hurtful. “I came home with tears in my eyes, and I wondered what I could do it make it change and not hear it again.”
Boudet, a journalist, says she decided to write down some thoughts because “writing makes me feel better.” So she quickly composed a Facebook post that she shared publicly, hoping that maybe some friends would share it, and “maybe 100 or 200 people would read it and think more next time about what they say.”
The message, which was originally written in French, said: “[WORDS MATTER] Here is my baby girl, Louise. She is 4 months old, has two legs two arms, and one extra chromosome. Please, when you meet a Louise, do not ask her mother, “How come you did not find out during the pregnancy?” Either they did, and the parents took the decision to keep the baby. Or they didn’t, and it was surprising enough for them, to talk about it over and over now. Keep in your mind that mothers have a tendency to feel guilty about each and every thing, so a surprising extra chromosome… I let you guess. Don’t tell her mother, “It’s your baby no matter what.” No. It’s my baby, period. Plus: “nomatterwhat” is quite an ugly name, I’d rather call her Louise. Don’t tell her mother, “As she is a Down’s baby, she will… etc.” No. She is a 4-month-old baby who happens to have Down Syndrome. It’s not what she IS, it’s what she HAS. You wouldn’t say “she’s a cancer baby.” Don’t say, “They’re like this, they’re like that.” “They” all have their features, their character, their own tastes, their life. “They” are as different between them as you are from your neighbor. I know that if one does not experience it, one does not think about it but words do matter. They can comfort and they can hurt. So just give it a thought, especially if you’re a doctor or nurse of any kind. I usually do not make my status “public” on Facebook, but this one will be. You can read it and share it as you want. Because each year there are (in France) 500 new “mothers of Louise” that can have a day ruined by those kind of words. I know it’s not meant to hurt. But you just need to know.”
Since Boudet first posted it on Monday morning, the original message has gotten more than 11,700 likes and has been shared more than 26,000 times — across France, the U.S., Canada, Korea, and beyond, Boudet says. And she’s thrilled it’s making the rounds. “I want it to be read by as many people as possible,” she says.
Boudet says she knows that many people guilty of saying the things she admonishes in her post are well-meaning and just don’t know any better. “Six months ago I was some of these people — I didn’t know about Down syndrome before Louise was born. Maybe I said those sentences without realizing that it can hurt,” she says. “But now I know that words can hurt or words can really cheer you up. Now I understand that you just have to explain to people. I didn’t want to just be angry, but to explain why these phrases can be harmful, and why people should say things in another way.”
While Boudet understands why other parents of children with Down syndrome have shared the post, she has spent a lot of time wondering why other parents or even non-parents have shared it, too. “Maybe it’s because it was really sincere. I wrote it with my heart, I didn’t think about it a lot, I wrote it quickly,” she says. “Or maybe because it talks about differences — there are a lot of people who are different in society, so maybe it speaks to everyone. Or maybe it’s because it talks about my motherly love for my baby, and motherly guilt, which every mom knows.”
In the two days since writing the post, Boudet says she’s gotten hundreds of messages, “from parents of ‘typical’ children, or parents of children with problems of any nature,” she says. But the most impactful messages are those from doctors and nurses who have acknowledged that they don’t always use the right language. “One doctor said ‘you’re right, next time I will think about it,’” she says. “That was really moving to me, because doctors sometimes think they are talking to other doctors, but we’re not. This is not just any patient and any case. This is our kid.”