halalalala, it is a story that is both so special and so universal of my friend Monica (today’s post) and her daughter Mathilde (thursday’s post ). i met monica 15 years ago. i used to give maths class with his future husband, Stephane. we were a bunch of friends, laughing with and supporting each other. we would attend each other’s wedding. etc. and then time has passed by we haven’t not seen each other for years. i follow her, know they have à first daughter, Victoria. and then a second one, Mathilde. i know it is not easy everyday. you will see why. and then one day, i see à fb status. i see it long, special. i read it. it is poignant. it is extra-ordinary. it is just here :
On august 10th 2012, our tiny Mathilde was diagnosed with Williams syndrome.
It wasn’t “environmental” after all. No, it wasn’t because I failed to bond with my child and no, these were not ordinary cries.
I wish I could say that a mother’s love outweighs it all. That I loved this child no matter what, that I did not care she was different, that the missing piece on chromosome 7 was irrelevant.
I would be lying if I did.
Four years ago we had just gone through the first week of “knowing”. I had read the Williams syndrome document on the orphanet website at least ten times. I had spent my first night and the ones following knowing why I was crying, knowing why I was hurting, knowing what was and would be wrong with her.
I did what I had always done. I worked my arse off, read, learnt. I tried to understand to adjust, plan, do what had to be done. With knowledge, with understanding I would be able to manage…
Then we did everything’s we were told. We enrolled Mathilde in a specialised facility, we made appointments with all the 12 doctors who needed to see her. We wrote her first “life project”. My husband quit his second job to make time for this crazy schedule. We got organised.
And then… then there was nothing left to do, except live with it. Resume the normal course of our lives which were anything but normal anymore. There was nothing left to do except acknowledge how slowly things would progress, acknowledge the absence of contact…
It turns out I didn’t know anything. I was so far from knowing. I didn’t know how hard it would be to get back up, how hard it would be to love this little girl, how long it would take.
I didn’t know my vision of the world would be shattered, that I would get lost before starting to find myself and being able meet her, my daughter.
I didn’t know how insidious and crushing the guilt would be. I didn’t know how difficult it would be for me to see myself as her mother. A mother gives her children everything, so how do you get over not having given a full genome?!
When Mathilde was born we did not send the traditional birth announcement card. I was waiting for things to get better, then I sort of forgot. When I remembered I thought no one would really get why I was sending it so late.
Mathilde was born 4 years, 4 months and 11 days ago.
I was told she would have physical, intellectual and behavioral traits linked to her syndrome.
A bit as if she had siblings outside our family, a second family. That thought was unbearable. This little girl I struggled so much to take care of belonged in many ways to another family? That wasn’t the deal!!! I wanted a little sister or a little brother for Victoria, a new member to welcome into our family, not into the Williams or the disabled family.
I didn’t know. I had literally no idea. I didn’t know that because of a few missing pieces our family would gain so much. I still think no one can wish for this. And yes, our lives would be simpler if Mathilde did not have Williams syndrome.
But I have found unexpected happiness in this second family. It is so vast, so diverse, so overwhelming. In this family people know the difference between pity and empathy. In this family people mingle, exchange, advocate. In this family it has become so obvious that we are all different and that we all benefit from these differences.
Unfortunately, in this family we also know what rejection feels like. We might well be amongst those who have always succeeded in everything, but suddenly we are forced to face what some people do to those who don’t conform, to those the standards won’t fit. Sometimes they don’t even bother trying. It’s ugly.
In this family people know they need to act, adjust, adapt, improvise. They know what commitment and effort are because they see it in their spouse, in the other mother, the other father and above all they see it in their children. These same children who might be stigmatized for walking late instead of being cheered for the perseverance and efforts they have deployed to get there.
In this family we completely understand that our children’s differences raise questions. What we struggle to understand is the rejection they trigger in some people. We don’t understand that some parents request that their child is moved to another class so as not to be pulled down by ours. We don’t understand that some decide it’s alright to exclude our children from school trips or swimming classes without even consulting with us.
Disabilities, differences… I would like us talk, laugh, cry about them, without taboos, as much as necessary. Like our kids do before we teach them not to be nosy and ask so many questions. How can we possibly accept something we don’t know? Something we don’t understand?
If we talked about it a bit more, maybe as parents we would be less scared when we realize our child will be different. Maybe it would be easier for us to understand that they are all different and that our challenge as parents is to help them grow while preserving these differences that make them unique beings.
When they are two years old, the whys are unending and we would give anything to make them stop. Today I hope our children never stop questioning things.
Physical, ethnic, mental, religious, sexual differences… Let’s talk to each other ! If you don’t do it for our disabled children, do it for yourself, for your own!
And then ? then I want diversity to become a commonplace, I want it to be part of our everyday life. I’d like us to stop running after the norm, stop considering conformity as some sort of ideal.
I want people to understand that disabilities, skin colour, sexual preferences are characteristics amongst other and that they will never define a person !!
I also want people to realize that these characteristics are not contagious ! Ignorance and stupidity on the other hand are passed down generation after generation. Let’s put an end to it!! Let’s embark on a journey together to discover the Other.
Mathilde was born 4 years, 4 months and 11 days ago, she’s an extraordinary little girl.
You just read her birth announcement.