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The courage and struggle of a mother with a girl with a motor disability


They are hard stories and, at times, difficult to assimilate. Perhaps that is why many times to protect ourselves we turn our backs on them. But they are realities that are there and that need to come to light. Today we want to share with you the story of struggle, courage, effort and, above all, of much love from a mother with a girl with a motor disability.

The perspective that my work gives me allows me to appreciate that, to get to the same place, not all of us travel the same path and that life, sometimes, is not a matter of time.

At nine my working day begins. At that time our students arrive and, among them, María José, a student with motor and intellectual disabilities, low vision and very delicate health, who needs the daily accompaniment of a nurse in class.

You need a lot of care and permanent attention from the moment you get up until you go to bedto. It is apparently fragile and very vulnerable: it has low defenses and is exposed to catch any virus more easily than others. When he was born, the doctors gave him only three months to live, but he is already more than one hundred and seventy-five, all who complete his almost fifteen years. She, like little Momo, ignored time, just wanted to live.

Upon arrival, ready in front of everyone, she watches us with caution and, after a few seconds that help her to locate herself, she gives us a smile and a load of kisses to our delight. María José does not speak, she only throws affectionate farts and messages wrapped in kisses and, when something or someone does not like them, she turns her head, because for her there are gestures that are worth a thousand words. Sitting in her chair she wears a beautiful dress. As every day she looks radiant, lustrous, happy, alive; willing to work and make the most of her abilities.

This is how our first contact occurs. The day begins for everyone, although for María José it has been a long time since it did.

Meanwhile, at home, her mother is now taking a short break. They began the day together. Hers, like all mothers, begins before their children's, but in this case, with a girl with the characteristics of our protagonist, a little earlier if possible.

It is worth so much effort, especially because he sees her happy and that gives him tranquility and strength when, with the streets still deserted and the night spilling over them, the sound of the alarm clock creeps in, faithful to his appointment. Then a beam of light timidly makes its way through the gloom and looks out into the void from its window announcing that it is six in the morning. It begins now, as every day, a dizzying countdown. Almost three hours ahead dedicated to the time trial for his daughter, all so that when nine o'clock arrives, she is in perfect condition and can begin the school day.

The first thing is to jump out of bed with enthusiasm, knowing that you only have a few minutes to yourself. A quick shower and sneaky coffee await. Soon, from the next room, a few kisses resonate muffled in the silence, they are the ones that the girl throws at the mother, warning her that she is waiting for her, that she is already awake, ready and delivered to attend to her.

It is the moment of the first meeting between them, of the union of the looks, of the connection of the smiles, of the purity of the feelings. With no time to lose and still with the taste of breakfast on your lips, the ritual that has been repeated since ancient times begins. First about thirty minutes of sprays to start the secretions accumulated at night. The girl sprayed with steam, the mother full of patience, a necessary ceremony that will facilitate María José ingesting a shipment of crushed fruit to alleviate her low weight and, not least, that of an arsenal of pills, more than ten daily and the seasonal ones (that if there are no added complications).

It is not an easy business, the little girl does not like pills and resists. There is an exchange of glances, frowns are frowned, gestures are made, tears come to light. Finally, a saving music that comes out of nowhere imposes itself on the scene calming the girl, who, abducted by the notes, becomes distracted, a moment that the mother takes advantage of to complete the task. Some time has been lost, but few things are as important in this girl's life as medicine, a luxury she cannot afford to waste. This circumstance generates a lot of responsibility and anxiety in the mother, something logical when the health of her daughter is at stake.

The aftermath of the stake advises after a good shower. Time, which in these moments does not run but flies, takes a small truce. The aroma of the balms and the warm voice of the mother cleanse and calm our little girl. This act becomes a small moment a day for the game, to strengthen ties, to share gazes loaded with messages that only they know how to interpret.

Back to reality again. A few minutes to dress her up and make her pretty because soon Alicia, the other daughter, is on her feet. At this stage it is the moment when the mother works magic and becomes divisible, omnipresent. Without losing sight of the older one who is ready, she takes care of little Alicia who, although very autonomous, needs maternal care.

The hours have passed without realizing it. In the distance the old bus approaches with its tired and slow pace, time that is used for the final touches. María José, who senses it, shakes in her chair with the force to accelerate her march. He loves going to school. There is a moment to say goodbye, enough for both of them to kiss each other again.

The mother who sees her walk away happily says goodbye with one hand, while, with the other, she holds that of her other daughter. There are still a few minutes left to get to nine o'clock and now he's investing them in hugs for Alicia, all the ones he hasn't given her before and, perhaps, the ones he won't be able to give her later.

Tomorrow the same scene will be repeated. María José will arrive with us at school, but before that, a new fight will have been fought in that house against the clock and the elements. None complains, it is what they have had to live. It is not better or worse, it is not easier or more complicated, it is their reality and they do not want it any other way. They know, since María José was born, that they don't have to pay attention to time, just learn to handle it, figure out how to stop it, and in that infinite space that remains, let go and live.

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