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Once upon a time ... that's how fairy tales begin, but my sister's story is not as happy as we would have hoped.
It all started in 2003 ... My sister was born on August 19, 2003. I was so happy that my little sister was finally here. But this happiness was compromised 7 days after birth.
During her pregnancy, my mother was worried without really knowing why. But the doctors were reassuring and told her that everything was fine and that the baby was doing well. Although it had reassured her, she had a bad sense of foreboding so she would often pray to the church.  On the day of delivery my mother went to the hospital to give birth to my little sister. I was very impatient because I had 2 brothers and I was finally going to have a sister with whom I could share a lot of things. So I went to the hospital to finally meet her; only when I arrived, my sister was in an incubator. She had swallowed fluid during the caesarian delivery and she needed care and a little help breathing.
At first, that's what the doctors told us. But quickly, it took a different turn. Indeed, Christelle was small and it seemed that something was wrong. Without really giving my mother any more explanation, the doctor told my mother that he needed to do some additional tests.
Seven days later, the verdict fell: Christelle had full Trisomy 18. And there the nightmare began. At first we did not want to believe it. For my part, I was hoping to get up one morning and realize that it was just a bad dream.

The doctor then told us that children with this disease did not live more than 6 months. He then asked my mother to choose whether she wanted to take her home or leave her. Of course, leaving her was not an option, although she knew it was going to be very hard.
I remember the words of a nurse while my mother wanted to breastfeed my sister: "there is no point in bothering her, she is not here for long". I do not know if these people, who are supposed to be professionals, realize the weight that words can have, especially in such a situation.
My sister was being force-fed. My mother decided to teach her to feed herself, against the advice of the doctors. First a syringe, then a bottle, then a teaspoon ... until she is able to feed herself. Thanks to her courage, my sister escaped gastrostomy but she still suffers from digestive problems.
From mother to nurse, doctor, physio etc ... I salute her courage and all those who care for a loved one. It's the love and care they need to live and be happy.
Of course it's not always easy, but each smile reminds us that the fight is worth the effort.
Christelle celebrated her 15th birthday last summer. I hope we will help her to still blow a lot more candles, and that her smile will continue to dazzle us and remind us how precious life is.

Created: 06/05/2019 13:45

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