On October 6, National Caregivers Day, Yasmina, a 38-year-old mother from Créteil, shares the challenges of raising her five-year-old daughter Amel, who has severe disabilities. Amel was born prematurely, and since then, Yasmina's life has revolved around constant care and vigilance. In a small 14-square-meter room shared with her three daughters, Yasmina remains alert to every breath. She describes knowing the breathing of each of her daughters, balancing the needs of Zahra, the oldest, Amel, and the youngest Alya, every night.
Yasmina's daily routine begins at 7:15 with an alarm, and by 7:30, the girls are up. At 8:30, Zahra is taken to CP, a primary school for children aged 6 to 11. Yasmina then starts her "shadow work" — caring for the younger children, tidying the apartment, and handling paperwork. At 11:30, she picks up Zahra for lunch, a task complicated by Amel's inability to chew, only swallow. Yasmina has become an expert in granulometry, judging by eye if the food will pass or cause a problem. She explains that she uses one arm for each child, mimicking the gesture of feeding Amel and Alya simultaneously.
At 13:30, Yasmina returns to school until 16:30, constantly moving between the strollers of the two youngest. In a tracksuit, with her hair flat and no makeup, Yasmina's fatigue is visible. She also deals with her type 1 diabetes and persistent tendinitis in her left shoulder, which makes her grimace. Her shoulder has carried thousands of liters of milk, tons of water packs, and the bodies of her children.
Yasmina describes feeling as if her pregnancy was stolen. In France, 30% of families benefiting from the Allocation d'éducation de l'enfant handicapé (AEEH) are single-parent households, according to the latest report by the Direction de la recherche, des études, de l'évaluation et des statistiques (DREES) on parents of disabled children. Caroline Bonnet, a psychologist at the Centre d'accueil familial spécialisé (CAFS) in Saint-Maurice, speaks of an exhausting mental load, explaining that for these children, you must think of everything, guess everything, and anticipate everything. Christelle Roger, a specialized educator at the Comité d'Études d'Éducation et de Soins auprès des Personnes Polyhandicapées (CESAP), shares this observation, noting that mothers like Yasmina are on the verge of exhaustion due to the medical appointments, contracts with care centers, and paperwork for the Maison Départementale des Personnes Handicapées (MDPH).
Amel often seeks calm in her room and does not ask for hugs, preferring to stay alone in her canopy bed with her favorite toy. She is passionate about the sounds of farm animals but cannot tolerate loud sounds and flashing lights. When her interactive book turns on, she turns away; when it is off, she enjoys turning its pages.
On September 26, 2021, Yasmina, pregnant with her second child, experienced dizziness and nausea. At the emergency room of the hospital Delafontaine in Saint-Denis, she was treated for diabetic ketoacidosis. Twenty minutes later, she started to scream as pains resembling contractions arrived. The baby's heart rate slowed, and the vital prognosis was at risk for both her and the child. Action had to be taken quickly, and labor was induced. Alone, she did not have time to warn her husband or family. Amel was born extremely premature and immediately placed under a humidifier. Yasmina saw her for only two minutes and recalls telling herself, "She's not finished, it's too early." Amel weighed 870 grams.
Amel was first transported to the neonatology unit in Poincy, due to lack of space closer, 45 minutes from Stains, where Yasmina lives with her husband and Zahra, who was then two years old. Then, Amel was transferred to Gonesse, in the Val-d'Oise, only thirty minutes by bus from home. The care changed radically. Yasmina remembers hearing screaming every time she visited. Amel seemed to be suffering, was constantly hungry, and had marks on her neck from scratching out of distress. These difficult moments created a distance in the family. The father, present at first, eventually disengaged and no longer visited his daughter. Yasmina found herself managing, alone, a disabled child.
Caroline, the psychologist, explains that the father's withdrawal responded to a specific defense mechanism: projection. She explains that society tends to point the mother out as the ideal target since she carried the child. Some fathers imagine that the problem does not come from them, allowing themselves to flee.
Amel finally came home at five and a half months old, but this return to Stains was a shock. Yasmina felt abandoned by the medical community: "I was left alone in the wild. No one offered me help. They just told me that Amel was a very premature baby." At home, the relationship between mother and daughter was difficult. Amel never asked for a hug, having spent her first months alone in the hospital. Gradually, her relationship with her husband deteriorated, leading to psychological and then physical violence. In May 2024, a domestic accident occurred: Amel fractured her right elbow. This incident, added to the marital violence she suffered, caused a turning point. Yasmina decided to leave her husband and returned to live with her three daughters in Créteil, with her mother. "We started everything over from zero," she says.
The accident also changed everything for Amel. She was finally taken care of by the Trousseau Hospital (Paris), where doctors noticed a complete lack of follow-up since her birth. They then proposed comprehensive assessments: brain MRI, skeletal scan, blood tests, and ENT examinations. Yasmina embarked on a real administrative marathon, preparing a file for the MDPH and organizing her daughter's new daily life: psychological follow-up, physiotherapy sessions, and regular hospital assessments. Yasmina is clear: as soon as she left her violent husband, her daughter's progress was immediate. First words, first steps... "She was freed," she summarizes.
This transformation, Caroline Bonnet, a psychologist, observes regularly in her practice. For her, the living environment is as powerful a driver as rehabilitation: "You can have a disabled child who evolves very well. If the environment is positive, supportive, and full of love, you see a lot of progress."
A Mother's Daily Battle with Her Severely Disabled Daughter
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Original sources:
- 🇫🇷Slate.fr



