At 14 years old, and even at eight, I already knew what cystic fibrosis was: the lack of a protein that breaks down mucus, a kind of mucus produced by the body continuously to turn the main organs (especially the lungs). , but also intestine and uterus). Suddenly, the mucus accumulates, damages the organs, and it ends badly when the organ suffocates the lungs or the intestines of your choice: it is death “not late”. But I was 14, and “not late” when you’re 14 is a long time anyway.
The announcement of my possible sterility
One day the doctor said to me: “One day, later, you might want children.” I did not answer, but this was definitely yes! My only life project, private and professional combined, was a super hot husband whom I adore, with children, a happy family, a house.
“- Even if this desire for a child seems very distant to you, continued the doctor, you have to know that it will be… um… I don’t like to say impossible… Let’s say extremely difficult… Well, to say more things. clearly, a lot of women with “phlegm” are infertile, because of the impairment of reproductive functions, so ovarian stimulation treatments are needed, and… um… that doesn’t always work. You must also know that these are high-risk pregnancies, very… Well, we are not there yet ”.
I said nothing. I was totally numb. I couldn’t see the connection between my illness and my fairy tale. In what name was this disease that we had never seen encroaching on my dreams? I was going to die “young”, let’s admit, it was abstract from my 13 or 14 years old, but he was basically telling me that I was not going to live! That I didn’t have the right to dream of living! Because for me, that was life. Prince Charming and children. I was devastated. for the first time in my life in the elevator that took me out of this prison, i said to myself: “my life is ruined! They want to take everything from me. “
The miracle
One day in 2011, I met Ludo. He was 16 three quarters and I 16 and a half. Very quickly, we became inseparable. Neither of us broached the subject of contraception or precautions. Ludo must have thought it was the girls’ business. Me, I told myself that Ludo had been serious before, to the point besides that we were the first one of the other. And I was not at risk of being pregnant. My doctor’s words on the sterility of mucus were written inside me with a hot iron. Even though I had sworn to make him lie one day.
But a few months later….
– “The result is positive. You are two months pregnant ”.
The doctor looked at us, surely expecting a reaction of horror. I was 17, Ludo too. Cystic fibrosis was still very abstract in Ludo’s mind. In mine too at that time. But I was personally aware that I would have to be well followed for the pregnancy to go as well as possible. I had thought about it well… I was not going to live old according to medicine, but are the people who make a child sure and certain to live old? And then there was Ludo. There were two of us. There are women who give birth on their own, do we prevent them, whereas if they die the child has no one left? Because I had a disease in my body, should my heart and my brain have been different, without the desire to build over time, without dreams or the ability to become a mother? And I, barely seventeen, already had the essentials to pass on: my joy, my strength, the knowledge of the cost of life. So, for me, the question of my “life expectancy” was settled. It was my baby, my life expectancy.
A trigger in advance
Loane was scheduled for January 1, but at the end of November, I couldn’t ventilate well, meaning I was short of breath. Physically weakened by my own weight loss, I had to bear the weight of the baby. And above all, concretely, Loane took up so much space that it compressed my lungs, already not of first quality. Getting around was becoming a problem. I couldn’t stand being pregnant anymore. At the same time, everyone had told me that the closer I brought the pregnancy to term, the better. My baby was not yet very big. On Thursday, December 6, I went to my monthly pediatric pneumopediatrics appointment. Except the doctor examined me. He frowned:
– There, it’s worrying… Well, we’ll go upstairs to see your obstetrician and the midwife because we can’t stay like that… ”
The three super “coordinated” doctors debated my case before the obstetrician delivered his verdict:
– Okay, we’ll keep you. We will induce delivery tomorrow.
Two days later, our princess went out before her daddy arrived, forced by her boss to stay at his post until noon. That same evening, I was alone in my room with my daughter. The nurses spoke very badly to me, like a lost sixteen year old who has just given birth after a contraceptive accident and is worried about nothing. Instead of appeasing me by giving me explanations, they ended up confiscating the bell from me as one takes a toy from a bad kid. But to console me, I had the happiness of my life sleeping close to me. It was the first happiest day of my life.
A second child?
One day when we were watching her play, Loane was about two years old, I dared to tell Ludo what I was thinking about all the time:
– One child, it’s not a real family…
– It’s clear. With my brother and my two sisters, plus my half-sister whom I love so much, it was never dead. I have always liked it about me.
– I wish we had a second child one day.
Ludo looked at me:
– A boy !
– Or a girl!
I added what pained me so much:
– But with the disease …
– So what ? It went well for Loane…, replied Ludo with his optimistic character.
– Yes, but you know, Ludo, a miracle, it never happens twice … To get pregnant as if to go to the end …
Some time later, we took a pregnancy test. It was re-yes! We were overjoyed.
The test of medical termination of pregnancy
We decided to keep the pregnancy a secret for a while. Before that, we had our wedding, a real Kate and William wedding. Except that shortly after the official announcement, I was more and more tired. When I saw the pulmonologist, I had already lost 12 kilos. I spat my lungs out and was rushed to hospital. My daughter came to see me and one day… Loane looked me straight in the eye:
– Mom, I don’t want you to die.
A bucket of ice cubes fell on my back. I was broken.
I tried to ensure:
– But why are you saying such things, Loane?
– Because. Because granny and daddy, they’re afraid you’ll die.
It was terrible. Terrible. But when you’ve made the choices I’ve made, you can’t give up. I took it back:
– I have no intention of dying, my princess. I am very well looked after here. And I promise I will come home!
Except that I wasn’t recovering. I was suffocating more and more. The pulmonologist explained to me that I had to choose between the baby and me. Shock. I had to undergo an IMG on October 5, 2015. She was a little girl, and she was not yet viable. That’s all I knew. This baby, I gave birth to him like a real baby he was, by vaginal route, under epidural, aware of everything as for a real childbirth, with Ludo next to me. He kept repeating to me over and over again: “It’s for you to live, my darling.” We do not have a choice. The pneumo had briefed him well. He admitted. Not me. I cried continuously: “I want my baby …” When I left the hospital, I weighed forty-five kilos for my sixty-three meter. I never regained my previous breath, my energy before, my weight before.
Pregnant again!
However, when I started to get better, we decided to try and have another child. That’s how in April that in April 2016, I stopped the pill. We didn’t want to stay with something as sad as the loss of a baby. To rebuild, as they say, is not to stop living in fear of dying, it is to move forward and start another adventure. Experience had shown us that a miracle could happen twice, so why not three? The next day, before taking Loane at the end of school, I went to get the results… Pregnant! I had a hard time hiding my joy from him! That evening, I made Ludo carbonara pasta, my top level, and waited even more impatiently for his return than usual. As soon as he walked through the door, Loane hugged him, as usual. Ludo looked at me over his daughter’s little shoulder, and in my eyes he understood. Before rejoicing, we waited for my new pneumo results and tell our parents. We were at the table and I announced:
– We have something to tell you, I’m pregnant…
My mother had a heart stroke for a quarter of a second that I was able to quickly interrupt:
– But all is well, we come out of the first ultrasound, it is a boy, in great shape, for July, and I am very in shape too.
Mom, sick and blogger
During pregnancy, I began to follow a lot of blogs or Facebook pages of expectant and new mothers. But one evening, I thought to Ludo:
–I want to create a blog!
– But to say what?
–Tell the daily life of mom AND sick. That there are days that are fine, days that are not, but that the best gift is life, that we must not forget!
And that’s how I started *. My sisters were my followers from the start, my mother found the idea dynamic and fun, Loane was fully cooperative. They were all proud that I presented them as my best supporters, captioning family photos with little stories from everyday life.
צו פרי געבורט
Midwife Valérie came more often to monitor the pregnancy, and on May 23 at the end of the afternoon, while examining me on the sofa, she announced to me in her voice which felt the experience:
– You just have time to go to the CHU. You give birth tonight or tomorrow.
– Already ? But I am seven and three quarters months pregnant!
– It will be fine, she said reassuringly. It is not a very small weight, it will be viable, don’t worry. Except that it was not reassuring. I called my mother straight away, telling her that I was going to pick up Loane from school, despite everything. I would drop him off as soon as Ludo arrived, on the way to the CHU. My mom was starting to get used to special ops. She was ready. Ludo the same. The car keys still in his hand when he arrived, he turned around in the direction of the CHU. At 3 a.m., I was woken up by the contractions.
– Ludo, I’m in pain! It begins !
– Oh la la, exclaimed Ludo, thoroughly on the spot. I was rolled to the labor room and at 8 a.m. on May 24, 2017, the second happiest day of my life began, the birth of Mathéïs. A first name of our invention like Loane, found three months earlier. Immediately, Mathéïs was weighed, measured, auscultated, obviously. The measurements were fine: forty-seven and a half centimeters and two kilos nine hundred. For a premature baby born at thirty-five weeks of pregnancy instead of forty, it was beautiful!
Read more in “Life, love, right away!” »From Julie Briant to Albin Michel editions.
*Blog “Maman Muco and Co”.