LETTER FROM MY SPECIAL DAUGHTER SANDRA, TO THE WORLD (*)
(during the Corona Virus Quarantine)
Xiomara J. Pages April 17, 2020
Dear friends, throughout the world:
I deduce from the look of Mom, who goes from one side of the house to the other in her chores, that something terrible is happening on the planet. So the first days that I began to notice that she was not leaving the house, I worried and felt sad and tears came out ... When she saw me, since I cannot speak to her, she became sadder looking at me so serious and tearful.
Mom doesn't come too close to me, she doesn't kiss me like she used to, she caresses me with gloves and a mask, she sings to me, laughs and plays with me, but I realize she is worried.
However, she disguises herself, paints her face like a clown, puts on different hats, imitates voices, sings, jumps and dances, and I can only begin to smile at her, because she has done enough for me in these almost 40 years of life that I remain bedridden. Life that I maintain thanks to the Creator and the countless sacrifices and care of my mother.
Sometimes I hear her whisper in her prayers close to my bed. The world suffers from a Pandemic, a rare virus created by man to harm the entire world. I listen to the conversations between her, the assistants and the nurses who come to help her in my care. And I listen to everyone on their phone calls.
People despair, they say, because they have to be locked in their houses, but it is the best way to avoid contracting the Corona Virus. This is what the government authorities order to protect us all.
Now I understand why Mom doesn't talk about my nieces and nephew, and it's because she can't see them, she who loves her grandchildren so much. I understand that no one visits me anymore, nor do singers or musicians, family or friends come to cheer me up for a while, as my mother always asks them. 
She suffers double for me. She takes care of me and takes care of herself so as not to fall ill. If my temperature rises a little, she runs to find the thermometer to measure it and constantly communicates with my doctor. Oh, poor Mom! ...I have to smile at her, she deserves it, like those who come to bathe me, change me, give me medicine and food. I have to do my part too.
Nobody has come home since last month, Mom has forbidden it, only the nurses and assistants. They all look like part of a Carnival parade, with headscarves, masks and gloves, just like Mom, and it makes me laugh so much, but they do it to protect me. They change their shoes and clean them over and over again.
I don't know how long this whole process will take, but I reflect ...
Since I was born I depend on my mother and other people, for my bodily functions, my meals, my medications, my cleanliness. My body is bent over to one side, because of acute scoliosis, I can't use my hands for any purpose.
I am very thin but it takes strength to be able to change and dress me. They have to guess what I need and want. Mom is the one who best interprets my glances and guides the others who later over time also learn to do it.
Are they complaining, they say? ... Why? ,,, for not being able to go out, for being in the house, with all the comforts. They, who can walk, talk, share, cook, eat everything, play, bathe in a pool if they have one, walk down the block.
How much would I give to be home and be able to do all those things !!
But ...don't they think of the soldiers in the trenches?
What about old men in wheelchairs or nursing homes? And the sick in hospitals or bedridden? And the prisoners unjustly locked in the worst conditions, for political reasons? What about doctors and nurses all around the world? What about the many who still work in essential positions to help others? And they complain? ...Why ??
I ... I am a Being, a Spirit like everyone, a human being, but silent, locked in a body that does not allow me to do any of that. And they talk about being in confinement ?
Confinement has been mine since I was born, unable to move or speak. But Mom managed to take me on special trips to the Cinema to see Disney films, and to the Mall, a Restaurant, a Concert or a Ballet. My assistants have taken me for a ride in my wheelchair, around the garden, or around the block, listening to the little birds, feeling the wind on my face, warming me with a little sun, watching the branches of the trees stir in the air.
Mom even celebrated a Mass in a Catholic Church for my Fifteen years and I had a pink dress with a Corsage of flowers and a princess headband, and many people came to share that joy with my mother. Nothing stopped her, I am her princess and she shares me with pride with everyone. But everything changed suddenly in October 2017.
Almost three years ago, things got worse. They took me to the hospital dying, I was very seriously ill, and in Intensive Care Units for over 4 months. Everything got complicated, with Pneumonia (twice), Septicemia (twice), Anemia, Fever, Seizures, Blood Transfusions, Intestinal Obstruction, connected to a ventilator to breathe (intubated twice to be able to breath ), and finally a Tracheotomy to save my life. I rely now on oxygen through a humidified compressor. And my mother was there with me all that time, and fearing the worst according to the doctors. Mom was there day and night in a hospital room, sometimes without being able to bathe, and eating badly or not eating at all, uncomfortable and hardly sleeping on a hard chair recliner. And these people who are at home, complain about being locked up? And they have normal children, couples, with whom to talk and play, and share ... And they still complain?
We have been in our home now for more than two years, because Mom refused to leave me in a Care Center. She wants to continue being in charge, despite my ups and downs because I am more delicate and everything is with much more care and responsibility. She has even become my respiratory therapist. She has learned everything she has to do.
My mother's whole life has been around mine, for almost 40 years. But I never hear her complain, I always see her smiling to me and to everyone. She refused to remain in a victim role. No!!! She does so many beautiful things, and she never refuses to help others, no matter how busy she is, as if she doesn't have a single problem.
Mom calls me, Her Angel, but she is much more than an Angel to me. She is my voice, my legs, my mind. Without her, I could not live. We both have a double mission of Love in this world. She lives for me, even if she has to be locked up as long as it takes, or a lifetime. And God is our support every day of our lives.
And these people locked up in their houses for protection for themselves, and for their loved ones and for everyone else, still complain?
Think about it, my friends, it's time to reflect... make a change in your lives without selfishness, not to hold grudges, and to improve the way we live. We have a new opportunity, don't waste it.
Do it for me, I can't move or speak ......
With Mom's voice,
Sandrita
(*) Sandra was born with RETT Syndrome, a neurological disease that mainly affects girls, and keeps them with many physical disabilities and mental retardation. Sandra remains bedridden, does not sit, does not stand, does not walk and does not speak. His mentality is that of a baby of several months, in a girl's body, despite his almost 40 years of life.
TWO SOULS AND ONE SINGLE HEART
Design by Deborah Luna
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