Parenting

Meet Louise, my 4-month-old with two arms, two legs and one extra chromosome

A mum of a baby with Down Syndrome has penned a heartfelt essay on the confronting comments she faces on a daily basis, and what she prefers strangers would say instead.

Caroline Boudet has only been a mother for four months, but in that time she has weathered more hurtful words than any person should bear. Caroline’s daughter Louise was born with Down Syndrome. She is also clever, and bubbly and the light of her parent’s lives. But the strangers who ask Caroline intrusive, hurtful and personal questions too often try to define Louise by her disability, instead of realising Down Syndrome is just one little part of what makes this little girl who she is. To air her frustration, Caroline penned a heartfelt essay on her Facebook page about the confronting comments she faces on a daily basis, and what she prefers strangers would say instead. You can read the touching post, in full, below.

I wrote this short piece as a rant/sob-fest, after a few comments that are all too familiar to me were made this morning during a routine medical exam for my daughter Louise. Over time, you get used to it — you tell yourself that these are simple mistakes, that you need to harden yourself — but, sometimes, enough is enough. I have asked myself what I could do to make myself feel better and maybe to stop the same thing from happening to others or to stop it from happening to me as often. I wrote this post and made it open to all of Facebook.

I would like to believe that this will put an end to the topic of my daughter’s difference, and that I will no longer have to explain it. I know too well that this isn’t the case. But if it could change just a few opinions…

This is my daughter. Louise. She is 4 months old, and has two arms, two legs, two great chubby cheeks, and one extra chromosome.

Please, when you meet someone like Louise, do not ask her mother, “Was it not detected during pregnancy?” Either it was, and we can assume she made the decision to keep the baby, or it wasn’t and the surprise was great enough that there’s no need to revisit it. And what’s more, every mother has an annoying tendency to feel guilty about everything and anything, so an extra chromosome that went undetected… I don’t need to tell you.

Don’t tell her mother, “It’s your baby, despite everything.” No. It’s my baby, period. And “Despiteeverything,” that’s an ugly first name. I prefer Louise by far.

Don’t tell her mother, “What a little Down syndrome child… etc.” No. She’s a 4-month-old child who is suffering from Down syndrome, or who has Down syndrome, if you wish. This 47th chromosome isn’t what she IS; it’s what she HAS. You wouldn’t say, “Oh what a little cancer sufferer… etc.”

Don’t say, “They are like this, they are like that.” “They” have their own personality, their own body, their own taste, their own journey. They are as different among themselves as you are from your neighbor.

I know that when we don’t see it, we don’t think about it, but words matter. They can comfort or hurt. So, think about it first for just a second, especially if you are a member of the medical community and wear a white, pink or green shirt.

I do not usually make my status open to everyone, but for this post, that will be the case. You can keep it going and share it if you wish. Because there are 500 new “Louise’s moms” every year whose days are ruined by unkind words. I know that they aren’t meant to hurt. Knowing that is enough.

The Weekly reached out to Caroline for further comment. At the time of publication, we had not yet heard back.

Related stories

Mum creates 'dolls with Down syndrome' for her daughter
Parenting

Mum creates ‘dolls with Down syndrome’ for her daughter

Like many mothers of children with Down syndrome, Connie Feda was frustrated by the lack of dolls that looked like her daughter. But unlike thousands of others who suffer in silence, Connie decided to do something about it. The US mother-of-six, who lives in Pittsburgh, Pennsylvania, has created a range of dolls that have the […]