I was asked to participate at the International Down Syndrome Day by CoorDown, an amazing International organization. I wrote my story, and I am sharing the stories of Martina and Valle.
I wanted my baby to be handsome, smart and funny, and I didn’t care about much else. I took him around everywhere for nine months, floating in his amniotic fluid, and with him the certainty that mine would be a normal trip; normal like the children who play at the playground or who memorize the multiplication table. He came out of my body a little ugly: red in the face, with a pointed head. Yet, I thought he was even more handsome than in my wildest dreams.
Four beautiful months followed, with my calm, good baby, who slept thirteen hours a night and breastfed without any trouble. There was only one unusual thing; he never smiled, and he rarely looked at us. The pediatrician, alarmed, sent us for tests, and my image of a normal family started to crumble. And then, a week before his first birthday, BOOM! Down syndrome, was the verdict; a rare form of it, not visible at a first glance, the kind in which only a portion of his cells has the extra 21st chromosome. Mosaicism, is what it’s called; a beautiful artistic word that conjures up the thousands of intrinsic possibilities of mosaics. Place the little tiles one way, and you get a certain effect, place them a different way, and the effect changes, with a fluidity and harmony between shapes and colors.
It likely also meant that mine would be a completely different film; a road that I had never even considered. I felt as if an enormous brick had struck me in the face. I remember the sensation of having forever lost my good and beautiful baby, and of having found in his place someone completely different, defective, wrong.
At first the road is lonely and extremely challenging: we pause on the sides, to ask ourselves tens of thousands of questions; we stumble on our fears and feelings of jealousy towards other children and other parents; we get lost, and we don’t know which way to take. But eventually, as we keep walking along, the road clears and widens, and instead of looking down or behind us, we start looking ahead. And ahead of us we see a world.
We only know about the bad parts of that world: mental retardation, marginalization, heart defects, loneliness... All these things come to mind when you see a person with Down syndrome walking down the street. It’s a world that we are programmed to automatically exclude from our lives, to avoid at all costs. I was like that too, before this experience; I didn’t want to have a baby with Down syndrome, because it meant all the ugliness of that world, and because, for the rest of my life, I would have to deal with this ball and chain, this handicap. One becomes awfully mean when it’s their turn to be affected.
It is a slow and complex passage, from panic to normalcy, and what makes it even more difficult is the amount of ignorance and prejudice around us.
Someone once told me, “If I get pregnant and I find out my baby has Down syndrome, I’ll have an abortion, because I don’t do Down syndrome”. Another said, “Don’t worry, you can’t tell that he has it”, as if the physical aspect was all that mattered. I have also been told, “I could never do it if I were you”. All these things are impossible to digest, and highlight the ignorance of people who have not been invited into this world; they serve only to remind me of how happy I am that I am not like them.
I have to say, even if it sounds cliché, that if someone asked me, “if you had a choice, what would you do?”, I would tell them that nothing on earth would make me want to miss this opportunity; especially for Luca, who loves himself as he is, and is happy and loved by all the people in his life. Luca is Luca, and if he didn’t have Down syndrome he would be someone different. I love this Luca.
Selfishly, I’d also not want to miss this opportunity because of what it gave to me; I am now a better person, a citizen of two worlds that, unlike what most people think, live together in complete harmony. I have learned to appreciate a different way to live life, neither better nor worse than the one I knew before. In an historic period like ours, when multiculturalism is seen as a sign of a modern and holistic civilization, I can say that I am the perfect example of how you feel more complete when the walls of ignorance and prejudice are no longer there, and how liberated you feel when you come out from under the suffocating weight of mental narrowness.
I wish that everybody could have an experience like mine: they too would become better people.
I am writing this story in the hopes of inviting people who don’t have much experience with Down syndrome to take a peek beyond the walls that surround you. I hope you will leave comments and share your thoughts, fears or experiences with me. I’m hoping to leave you with a small hole to look through, and with this little secret: if you push on the wall, it will become weaker, and that little hole will turn first into a door, and then into a mountain pass.
It will become freedom.
(translation by Dan)
Every year CoorDown makes a video to launch its campaign. Here is the one from this year. I would like to point out that the first girl you see, the cute one with glasses and braids, is Emma, and her mum is Martina.
Here is Martina's story:
Here is Valle's: