Dramatis personnae: Anne-Fleur (1)

I briefly alluded to my sisters when I introduced this blog in the previous post, but I shall focus on the eldest one here.

When one hears of people with Down syndrome, it is mostly of children. Very often, there is a lovely picture of a smiling child, different from “normal” people, but not that much. Parents are talking of their offspring or researchers of the progress made by science during the past years. Most of the time, the reader is given a positive image of family life: the child is a beacon of pure light, a treasure, someone to cherish unconditionally, a gift of God, a new meaning for the existence of the whole family, a blessing.

I do not say it is wrong. I say it is one aspect only.

Anne-Fleur will be 57 next July. She was born in a French middle-class family in 1959. Her parents were not young. Her father was almost 40, and her mother had turned 33 the previous April. They had married late and already had one daughter born 19 months earlier. They wanted a family of four. They were staunch Roman Catholics but their faith was in God before being in the teaching of the Church. They had both been working before the birth of their eldest. The mother wished to come back to her job, if and when possible. They were not particularly ambitious, but they liked their respective jobs in a private international enterprise, and thought a balance could be found between jobs and private life.

Anne-Fleur’s birth changed all this.

I shall tell their story in another post. Let’s just say here that they had no other child; that her mother never went back to her job, and that her father almost stopped all dreams of a career in order to be part of her education. Before she was twelve, her father had died of cancer and exhaustion. Her sister was raised with the idea firmly hammered in her mind that she was not to dream of marriage and children of her own unless it was agreed with her potential husband that she was to take care of her mother and her sister. Anne-Fleur was to stay with her family and not to be sent to an institution or home. The mother went back to work in the enterprise where she had worked until Anne-Fleur’s birth when the father died. She started from the bottom again. She was one of the first to suffer from the layoffs when the economy began to dwindle in 1982. She stayed at home, taking care of Anne-Fleur, and slowly died of exhaustion twenty years later. The elder sister then took Anne-Fleur with her, suffered from a burnout and depression and died from cancer. Anne-Fleur then went to my own family, and at the death of my mother, fell into my care.

One may wonder how a girl, then a woman, usually said to be psychologically fragile, was able to endure so many close deaths around her. Anne-Fleur is resilient. She has no true sense of time and takes one thing after the other. She has feelings but they are mostly immediate – for immediate things and beings. She has been raised in the firm beliefs of the Roman Catholic faith: the members of her family are dead but they are in Heaven and look down on her, wait for her, and will welcome her when she dies. At the same time, through the communion of the saints, they are near her every day of her life on earth, take care of her, and they may join in prayer where they communicate together. No question of messages from beyond: all this is done through the strength of prayer as one speaks to God and listens to God in one’s heart and soul. In any case, Anne-Fleur does not feel left alone on earth.

There is another reason for which she is not alone on earth: there has always been someone to love her and to take care of her. One after the other, each member of her family has been here for her. Today, she begins to worry: I am the last post between her and the unknown. She perfectly knows that were I dangerously ill, exhausted or dead, she would be in the care of the social services and sent to an institution, home or family paid to care for her. She is frightened of such an occurrence. She clings to me.

When she was born in 1959, she could hope to have a lifespan of around thirty years. Nowadays, people with Down syndrome (this is called DownS) are expected to live around sixty years. Sometimes, I am frightened by the potential proximity of Anne-Feur’s demise. I cling to her.

And this is the paradox: we cling to each other because we love each other. At the same time, she is a weight in my life. When Mother died, I left my life behind me to take care of The Girls. There is regret and anger mixed with my love. I do not consider Anne-Fleur a blessing. Her parents and her elder sister did not consider her a blessing either. This is the sweetener served to the world and to oneself to help digest the bitterness of truncated lives. Sacrifices are required from parents and siblings and all family caregivers when they take care of disabled children who grow up into adulthood.

They only are a blessing because they open new vistas upon life. Attention is brought to details, humble joys. One becomes conscious of the small things that make the disabled person’s life: a ray of sunshine, the feeling of the rain or the cold, the beauty of a flower, the importance of a moment – this moment – the slow unfurling of the day, the pace of the hours with their rituals. Small things.

But at times, these small things, this slowness, this eternal circular pace, all become stifling. To keep her balance, her poise, and her grip upon her life, Anne-Fleur needs the repetition of things. All disturbances must be explained. All new events must be given a relative importance. One never knows what Anne-Fleur will accept without question and what will be rejected or perturbing. Everything must be carefully kept under control; no undue emotion must be displayed.

All this obliterates parts of one’s life. This is one reason for overall erosion and exhaustion. Life with her as a caregiver is an eternal fight for keeping one’s life and sanity, and one’s grip over one’s own life. This is endless. Well, there is an end: either her death or mine.