“I strive to live each day one after the other. We, my husband Loïc and my two boys, Gaspard (15 years old) and Arthur (8 years old), strive to live each day one after the other. Azylis, our second daughter, passed away just four months ago. She was 11 years old and had metachromatic leukodystrophy, a rare disease. Her older sister, Thaïs, suffered from the same pathology and passed away in 2007 at the age of 3. Three and three quarters years to be precise. At this age, it’s small, so small that you can still count the quarters. At the origin of this disease, a conjunction of “bad genes” between Loïc and me. We are both healthy carriers of a genetic disease. We have a one in four risk of having an affected child with each pregnancy. But, of course, we didn’t know until we fell in love and decided to start a family. I don’t like to talk about “incompatibility” because after everything we’ve been through, I consider that we are, on the contrary, very compatible.
It’s lucky for me to have Loïc by my side. Our couple could have come apart, but we managed to stay together, united. Pain isolates. In order not to take refuge in each one’s own bubble, it took a lot of dialogue and efforts to understand. It allowed us to keep moving forward, working, raising our children, making choices for them. Like accepting that Azylis receive a bone marrow transplant right after birth. Doctors were hopeful it would reverse the disease. It worked in part, but it didn’t cure her. I regret nothing. We did what felt right at the time. The hospitalization which followed the transplant was very heavy, with a long period in a sterile room, then months of taking care of Azylis without ever removing our masks, neither us nor Gaspard who had while 5 years. I had to wait over six months to just kiss my baby on the cheek.
While Azylis had been discovering an almost normal life among us for a few months, outside the hospital, my first Thai daughter was killed by the disease, discovered at home at the age of 2. His gait then, thumb turned outward, had caught our attention. The orthopedist had not detected anything in particular, but had advised us to see a neurologist. He was the one who told us about the diagnosis. And the future trials to face, since metachromatic leukodystrophy gradually paralyzes the entire nervous system, starting with motor functions, speech, sight, hearing, until it touches a vital function. Thaïs had a very limited life expectancy (between two and five years) and there was no hope of a cure. Our “princess courage” breathed her last at home. Even the last moments, and despite her long stretches of sleep and almost total paralysis, she was present with us. We have constantly reinvented a language to continue to communicate.
All these years, from bad news to bad news, the diagnoses, the first signs of the disease in Azylis despite the transplant, the increasingly unbearable pain for Thaïs, the progression of the disease, the sleepless nights, we held on. And it is thanks to our children, full of self-confidence and boundless joy in living. But also thanks to our entourage. Alone, we cannot get by. Our friends and first and foremost our close family, all those who mobilized pto help us. Host us at the other end of France. Give us a few moments of breaks when exhaustion awaited us. Take over from our daughters. We listenter. Let us be ourselves. It is only in the family that we find this form of abandonment, this comfort. In fact, I benefited from a kind of multidisciplinary care … Everyone, loved one, therapist, caregiver, played a role in helping me to go through different stages. Drive out the guilt. Change of outlook on life. “Add life to the days when you can no longer add days to life”, explains Jean Bernard, an eminent oncologist. Know how to answer children’s questions. To give them an educational framework too, despite the very strong temptation at the beginning to offer them a lot of freedom to compensate for the difficulties they are going through. Thérèse, our maternal assistant, worked miracles to soften our daily life and that of the children.
The disappearance of Azylis is still very recent. I am not capable of making plans and I do not want to make them. I wrote my two books-testimonies (I am a journalist), especially to leave a mark on my youngest son, on my relatives. I made a documentary on sick children (“And the winning mistrals, 2017”), to show the bluffing optimism of children. But I do things without pressure, instinctively, when I reach a point of balance, I go for it. I don’t want to set goals for myself. Loïc has converted. He went from consulting to building. The trials perput to acquire a form of freedom. For Loïc, it was asking himself “in what professional way would I flourish the most?”
I sometimes cry. Often. When I walk in the street or take the metro for example. But there are times when I’m fine, I’m not sad. I understood this thanks to the children. You can suffer and the next moment you can feel happy. My eldest, Gaspard, is going through a difficult period. Small, he expressed himself a lot and with a disconcerting maturity. The quote at the start of my first book is from him: “It’s okay with death. It’s sad but it’s okay. Today he is in pain but says he knows he will get over it. Reflection has replaced intuition. Arthur recently collapsed thinking of Azylis. After a long hug in my arms (suddenly, I was crying too), he said: “Excuse me mum, but can I go play soccer now?”. I also realized that many of our expectations were driven by fear. We hope for a healthy child, we imagine a life full of successes. During my fourth pregnancy, I had less anxiety because I was released from this pressure. I knew the only possible promise a mother could keep is to love always. Unconditionally.
Today, my balance remains fragile. I do not especially want to deny my past, my memories. But I don’t have to lock myself in there either. So I try to leave the door open. I have this possibility to decide. Illness and death taught me this: we always keep our will, we remain the captain of the ship, even when a huge storm hits the sea. Our strength is beyond suspicion.
Interview by Katrin Acou-Bouaziz