Testimonial: “My child has Down’s syndrome”

I was never the type to have a child. I was of the caliber of travelers.Eager for experiences and intellectual encounters, I wrote articles and books, I fell in love quite regularly, and the infant’s digestive tract was not part of my horizon landscapes. No to alienation, no to looping “areuh” and culpable exits. No child, please! I accidentally got pregnant with a Greek I was really in love with but who returned to his country shortly after Eurydice was born, leaving us with nothing but the smell of cold tobacco. He never recognized his daughter. Vasilis, this great adolescent, undoubtedly did not want to take the path of truth with me. Because Eurydice, when born, did not have 23 pairs of chromosomes like us, but 23 pairs and a half. In fact, people with Down’s syndrome have an extra half-pair of chromosomes. It’s this little extra part that I want to talk about, because for me it is a better part, even more, more.

My daughter first transmitted her energy to me, the one that made her scream from a few months of life, calling for endless stroller rides and outings in the city. For to sleep, I was driving. While driving, I wrote in my head. I who feared that my Dice, – also Buddha was at birth, in its collected form, too chubby for the little girl’s outfits that I had planned for her -, would take my inspiration from me, I discovered that contrary, with it, my mind was racing. I feared the future, it is true, and the day when our discussions would come to an end. But very quickly, I had to admit that in any case, it did not prevent mine from working. It even allowed him to function better. More precisely, more sincerely. I wanted to show my daughter lots of things and take her on a trip. Despite my finances which were not in good shape, I felt that a common impetus was necessary for us. During this period, we never ceased to get to know each other, even while sometimes braving dangers. I lacked money, security, we sometimes ran into strange hosts, and after a few getaways, I decided to go back to Crete. Far from me the idea of ​​rekindling the flame with Vasilis who I already knew recased with another, but I wanted to see if some material support could come from his family. Alas, his sister and his mother too intimidated by him avoided us as much as they could. As for him, he refused any reconciliation with the little one, snubbing the appointments that I gave him on a beach to prefer them, he confessed to me, a walk with his dog … I nevertheless submitted to what ‘he asked me: a DNA test. Indeed, it seemed to him quite improbable to have been able to father a child with Down’s syndrome. The verdict is in. Vasilis was indeed Eurydice’s father, but that didn’t change his attitude. Regardless, I was happy to have come this far, to Chania, Crete. Where Dice’s ancestors were born, where they lived, in those ancient stones and that wind. The two weeks of stay did not offer him a father, but they further strengthened our ties. In the evening, on our terrace, we liked to say goodnight to the moon while inhaling the scents of sage and thyme.

These warm scents, I quickly forgot them when barely entering the nursery, Eurydice developed leukemia. When the shock treatments had to start, my father arranged to put us in a hospital in Los Angeles and enroll the little one in his health insurance. My daughter dressed in shimmering colors was covered with catheter and tubes. Alone with me (her father who I had asked if he could be a compatible bone marrow donor suggested that I give up and do nothing to save her), Dice endured all kinds of terrible treatments, with courage. . Desperate to lose her, I used every short leave to rush outside and offer her anything that might entertain her. I quickly came back to her aching little body, and I listened to the nurses say how Eurydice was their “shot of happiness”.It is perhaps his way of living in the present that most affects people accustomed to nostalgia for the past or to the promises of the future. Eurydice, on the other hand, saw the moment, rejoiced. Good will, aptitude for joy and empathy, this is what my daughter is gifted with. And no philosopher, even among those I have always admired, could compete with her in this area. The two of us pulled off the feat of being locked up for seven months in this hospital room and enduring the noise of the machines. I figured out how to entertain my daughter, playing hide and seek with the bacteria she should definitely stay away from. Seated near the window, we talked to the sky, to the trees, to the cars, to the mud. We escaped from that white lino room in thought. It was the proof that thinking together was not impossible… Until the day when we were able to go out, rush into the vacant lot next door and taste the earth with our fingers. The cancer was gone even though it remained to be watched.

We returned to Paris. The landing was not easy. When we arrived, the caretaker of the building knocked me down. Noting that at 2 and a half years, Eurydice was not yet working, she advised me to place her in a specialized institute. Immediately afterwards, while I was putting together the file aiming to have his handicap recognized, I had my backpack stolen. I was desperate but a few weeks later, when I had not been able to send this file since it had been stolen from me, I received the acceptance. The thief had therefore posted the file for me. I took this sign of fate as a gift. My little Eurydice waited until the age of 3 to walk, and that of 6 to tell me I love you. When she had just injured her hand and I was hurrying to bandage it, she let go: I love you. Her taste for walking and her frenzy of movement sometimes lead to terrifying stunts or escapades, but I always find her at the end of these joyous fugues. Is this what she wants, deep down, our reunion?

School was another kettle of fish, since finding an “adequate” structure was a challenge.My disabled child had no place anywhere until, luckily, I found a school that accepted it and a small studio not far from where we could accommodate our two gaieties. Then it was necessary to face the death of my father and there again, Eurydice showed me the way, listening to the reading which I made to him of “Pinocchio” the book which my father would have liked to have time to read to him. Pinocchio wanted to be a little boy like the others and he became so at the end of his life, but his life which is told is that of his difference. My daughter also has a story to tell. His extra chromosome hasn’t taken anything away from us. It allowed me to think better, to love better, to move faster. Thanks to her, I am sure of this: “Luck is what we create when we stop waiting for it to finally smile at us, when we abandon this belief, reassuring until the end. anesthesia, according to which the best is yet to come ”. “