The first time I had contact with a “different” person, we were both about four or five years old, it was an unexpected encounter.
At that time we lived with my family in Rosario, my parents had a business in the southern part of the city, next to our house, that afternoon like so many others I was playing outside the store, shortly after they arrived in a black car and old a married couple and their little daughter, got out of the vehicle and advanced towards the entrance, when they arrived in front of me the girl stopped and without saying a word tried to take the doll that I was cradling from my hands, she did it pulling for a few moments with heavy movements and ostentatious,
I repulsed his advance with disgust, and after a brief struggle
and with Carmelo (the doll my father had made me) still in my arms, feeling a mixture of strangeness and discomfort, I ran home to take refuge from that unknown visitor, who seemed insistent and clumsy to me.
I never saw her again, but sometimes I think of that little girl, in her peculiar way of inviting me to play, in the confusion of both of us, in my rejection, in her frustration, in the impossibility of interpreting our languages.
look also
The shame of drowning in a glass of water
My second encounter with disability was with acquired disability, after my father suffered two strokes that caused him to lose a large part of his basic abilities.
In one afternoon, I went from being his daughter to being the young orphaned mother of my own father, I learned quickly and with the force of facts, to change his diapers, to bathe him, to dress him, to feed him by mouth, to to heal his wounds, to teach him to articulate his words again, to stimulate his precarious movements.
Everything that was to relearn his skills became a titanic race against the clock, he was our Sisyphus stone.
As time progressed and some tiny progress began to be glimpsed,
my father silently rejected his new reality .
, which caused him a great depression that further hindered his already difficult performance, to the point of definitively preventing his recovery.
an oak.
Sandra Pasquini with her son Oli: they liked to plant trees.
By then I was nineteen years old and our only family was him and me, I had no one else to share the responsibility of raising my father and in turn staying afloat myself and not being swept away by the terrifying tide that left us in that shore of the beginning.
Four years earlier, my mother had died shortly after turning forty-nine, due to a ferocious cancer that had kept her plunged into the most bestial of hells for almost a decade, while my father and I orbited around it.
Somehow my mother was also "different" in the eyes of others, the disease had transformed her body and that transubstantiation was irreversible, it was absolutely unacceptable for me at that age.
However, some of my classmates were the ones who put me face to face with my own ghosts, when leaving school, when the school bus failed and my mother went to look for me.
Her extreme thinness gradually increased until she became ghastly and aroused the attention of the other girls, who with the curiosity and inexperience typical of childhood,
She had become "different" under the scrutiny of someone else's magnifying glass
, before the morbidity and malice of adults and the innocence of those children.
Art.
A still unpublished poem by Sandra Pasquini and a collage of hers about being a mother.
Some time after my father's death, another shock as sure as lightning would come to wake me up again, with the most unexpected event of my entire life.
In 2001, I had been living as a couple for five years when I received the surprising news of my pregnancy.
From then on everything was expectation and happiness, until the fourth month when the situation of my baby in the womb began to get more and more complicated, putting his life and mine in danger and we had to be referred to a new high-risk obstetrician, in a more complex hospital in another city.
At five in the morning, five days before the end of April, with the referral of my doctor, and two books by Werner Goldschmidt in my backpack, I set out with the father of my son on a journey that for me was daily but that that morning would become “The trip of my life”, a one-way trip from which we would never return, even though almost three months later we returned home with a medical discharge and our little son in our arms.
The world, as we knew it up to that moment, had been left, along with the Faculty books, seventy kilometers from there that morning, and we were never what we were again.
Our fragile and tiny son, barely two pounds and almost thirty-two weeks old,
had been born alive by some miracle.
That morning at the hospital they prepared me for an emergency caesarean section in which I would give birth to a stillborn son.
Certainly some events in the universe seem to happen according to their own concert, indifferent to all human premeditation and beyond all logic.
Neither before nor after time.
About one of the ultrasounds, months before his birth:
Where he should have said;
little Being that will teach you the most important thing in life.
Being of slight and fragile complexion, who will observe the world from the depth of two oblique sparkling blue lines.
Tiny Being with a fluttering of little birds in its hands, which, like the Swifts, sustains its flight (and mine) while awake, but also flies asleep and makes that permanence our footprint, the way back and forth.
He thus travels kilometer distances that separate him from the indecipherable world of others and snuggle him in that warm lair of dreams that is my sternum when it cradles the ticking of his tiny riotous heart.
Where he should have said;
my first breath and also my last, my most powerful law, the only one, what he said without euphemisms was;
"Inviable fetus", "Fetal anomaly incompatible with life", with risk of life for the mother.
Against all odds my son was born alive, against those same odds he survived day after day, he was not "a vegetable" as predicted, he walked for the first time at the age of six with great difficulty, and for some time he articulated two or three vowels.
These random events, for anyone with their full intellectual and physical abilities do not represent anything out of the ordinary, but for me, my son was born Premature with Cerebral Palsy, Down Syndrome, Autism Spectrum Disorder and severe Heart Disease, That he has gone through his own "Darién" and continues to fight battles against his own body every day is an extraordinary conquest, even though two years ago, barely turning eighteen, he stopped walking, even though he was never able to control sphincters, nor could he. write a word, neither add nor subtract, nor wash, dress or eat and drink alone, even though he could never tell me "Mom I love you".
My son, Oliverio, whom I named after Girondo the poet,
is in itself his own outstanding achievement
.
Understanding your disability as your own individuation from the beginning is understanding that your chromosomes determine your possibilities and also your impediments, your struggles and your victories, make you look like no one, an imitation of no one, a being in permanent growth and self-improvement.
Some nights I have dreams in which my son talks and we have extensive conversations and other dreams in which he still walks and we walk together holding hands, dreams in which he runs and sings.
Being the mother of a son who cannot verbalize his needs, his emotions, or his thoughts, of a son who does not speak, for me it is the norm in my life, only when I hear the small children of some friends talking, do I fall into the realization that not talking is something that happens to him.
We have learned together to communicate in our own language
and to know what is happening to the other with just a look.
Personal experiences are non-transferable, and the way of dealing with the complexity of assisting a person with multiple disabilities, who is also my own son, has repercussions of profound impact.
Since his birth I have infinitely increased my ability to rebuild myself, to get up and continue even if I fall again at two steps, it is because of him that I cannot afford to fall.
I have learned to multiply hope, illusion, faith, magic, and always love.
Serenity, especially in the face of adverse events, and patience are two pillars on which the engineering of my motherhood is sustained.
Without this constituting an infallible antidote against fear and uncertainty.
The fear of losing what is most loved is a ghost that persists in insistently lurking at my door.
The interrogation before the fortuitous, the musings about the duration of one's life in accordance with the special and permanent needs of the child, conjecturing about what has not yet happened, is always inquiring into nothing.
I have never sought to meet the expectations of others, I never had to work on "accepting" my son's condition, because for me it is natural, it was our normality from the beginning, everything that he is in his capacity as in his limitation came with him , that's how I met him, that's how I
engendered him and that's how I brought him into this world
, everything that came after has been growing or shrinking with us until today.
Dealing with the fear of loss is a daily training, living with the certainty of time lurking is not easy, I have the advantage of being a writer and poet, and I can also exorcise the future through words, appease, sweeten and redeem its tentacles.
Sometimes I count the times that in twenty-one years I have changed their diapers every day, brushed their teeth, put food in their mouths, and then those accounts become poetry.
My son faces new challenges every day, each time more arduous. With him, I have learned that every day is a life and every life is an opportunity.
The progression, the degenerative nature of capacities and functions, the impossibility of a truce, staying in control of what happens, the race against time, twisting the arm of the beast, protecting one's own psyche,
keeping laughter intact, the capacity for wonder, for discovery, being happy with facts and
seemingly insignificant things, redoubling one's own bet, raising the bar a little more.
Understand that there is also shadow in beauty and there is beauty in the dark.
You learn to drift, to walk in the thickness of the night, in the density of the fog.
All pain is always the beginning.
Taking care of the son and taking care of the father are nothing alike.
My father's bedsores mortified me unspeakably, my son's eat away at my body, torture my soul.
Having taken care of my father with a disability, for seven years and until his death, when I was a teenager, having attended to his most basic needs as if he were a newborn, taking care of my son with multiple disabilities, although the care and disabilities are the same. Even though I loved my father and I love my son, caring for the son and caring for the father are nothing alike.
Until it touches you, until it's your child, you don't know the intensity of the pain you can feel, the fear and strength you are capable of harboring, or the love you can give.
Until it touches you, you don't know the meaning of unconditionality.
While the factual will continue to push us towards the future, one morning after another.
A dream with my son who walks, a dream with my son who talks.
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Sandra Pasquini
, writer and poet, published the poetry books “Compás de Espera”, “A mansalva” and “Una lluvia que”.
She has three other books of poetry and one of short stories waiting for a publisher.
She does collaborations for graphic media.
She is working on a multi-disciplinary art project and translating her entire work into Italian.
She considers that defending and preserving what is genuine and joy, especially in adversity, is one of her greatest strengths.
She says that without friends life would be an impossible journey.
She lives away from the noise of the city, in communion with nature.
She believes that the best music is the laughter of children and the singing of birds, and that God lives in the eyes of dogs.
She loves the sea, storms and walking in the rain.
