SPEECH FOR SANDRA'S MASS May 19-2018

(IN ENGLISH )
SPEECH FOR SANDRA'S MASS
by Xiomara J. Pages.
Saturday, May 19, 2018 @ 1:00 p.m.
@ Good Shepherd Catholic Church
Rev. Father : Jesús Arias
Singer: Cristy Arias.

I want to thank Father Arias, all those who work in this parish, the singer Cristy Arias, the pianist Alejandro and all those who made this mass possible today.
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This afternoon we are gathered to give thanks to God, for the life of an angel, of a girl who can't speak or walk, but who has moved hearts and changed lives. Sandra has been more than a cross, a blessing for me, for her brothers, for my family and for many friends. Today I want to thank everyone, family, friends, acquaintances and people I have met in this new and difficult stage of my life, to all who have attended this Mass today, to those who couldn't come for different reasons and for this terrible weather, to those who have shared the miracle of life that is SANDRA .. To all those who have prayed and prayed constantly and helped us in a thousand ways, materially and emotionally, with words of support, and encouragement in the most difficult moments for a mother.
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23 years ago we celebrated a Mass for Sandra's Fifteen Birthday, it was announced in radio and press, and people came from all over, giving donations for the Association of RETT Syndrome ... Cristy Arias was precisely the one who sang at that mass... And again today, 23 years later.
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I thought that my daughter would not reach so many years of life, since her illness does not guarantee much more and can die at any time. I always waited for Sandra, She was the daughter, the girl I wanted to dress with lace and bows, and I prepared her layette in pink, when at that time sex was not known before birth ..... but she was born ill and we didn't know, it took me more than a year to accept that she would not be the same as my other two children. However, I am convinced that God lent me one of his angels ... and I came to accept and love her with all my heart, and I give her my life every day and every minute .. It was very hard, but although it is not the death of my child, it is the death of an illusion, and it takes time to assimilate it.
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The grieving process is natural. The words of consolation like ¬ - '' do not cry, think that everything will turn out well and there will be another opportunity '' - are of well-meaning people who love us, but are unaware of the feelings that are experienced, because the important thing is that one expresses, let it vent.
The bad news is real, so a mother must show what she feels and not try to hide the feelings. It's good for our mental health. You have to give her time. And in the case of RETT Syndrome, many doctors, therapists, and nurses are unaware of this rare disease that affects mostly women, and barely 200,000 cases are known around the world, it is believed that out of every 10 thousand births of women, 1 girl is RETT .
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When Sandra was 5 years old, we discovered her RETT Syndrome, previously we had no idea what was wrong with her. It was important at the end, to have a support group, mothers who have lived the same experience; although you can't make conjectures from other previous stories, because each case is independent. Avoid awkward comments, listen to the mother, give her space and time to assimilate. Most of these RETT girls come to mothers who wait with enthusiasm and anxiety, without knowing what awaits them over time, but for them, no sacrifice is too much, no pain too great, no wait too long.
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I visited with her, doctors, hospitals, looking for what was wrong. And once I found out, I contacted doctors, neurologists, pediatricians, to inform them of this syndrome and sometimes sent information, pamphlets to their offices, and gave lectures, and took Sandra in her little wheelchair so that they would know the case first-hand . I am a spokesperson for the RETT Syndrome Association since 1985, I communicate with mothers with RETT daughters all over the world, not only in the USA .. because we are, the RETT mothers, spokespersons, in making known what our daughters suffer and we help each other and others ... and we constantly educate the medical staff wherever we go with them. The more than 4 months with Sandra in the hospitals from October of last year to March of the present, I dedicated myself not only to care for her but to educate all the medical staff about this ...
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If the diagnosis of this sad illness is unfair and unpleasant for any human being, it is still more irrational and inexplicable when it comes to these helpless, innocent and tender girls. These small creatures are often not even aware of what is happening to them. The movements of self-stimulation, constant and destructive endanger their lives and they can't even stop them.
However, despite the fact that many die at an early age, Sandra has gone through procedures and hospitalizations ... and has survived everything ... she was hospitalized in July 2002 with terrible convulsions, and survived ... Not even a bedsore in these 38 years.
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In February, 2006 her oxygen, sugar, potassium went down, and she was taken to the hospital by the Rescue, and she survived ...
In August 2013, She had a pneumonia for the first time, and barely three days with antibiotics by IV .. she survived ...
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It had never been so serious as when that Saturday, October 28, 2017, we had to run to the nearest hospital and with the words of the paramedics that she might not arrive alive at the hospital. There, in ICU, seriously ill, she resisted two entubations, pneumonia, a strong cold virus, and septicemia ... and finally a tracheostomy ..
After more than a month she was transferred to another hospital on Nov. 29, and there we stayed until March 2, 2018. Sandra survived again during that time, with another pneumonia, cold, septicemia, fever and seizures, an intestinal obstruction, transfusions of blood, and survived ...I was with her day and night, hardly sleeping on an uncomfortable couch and Sandra didn't have a bedsore either during more than 4 months, because I was there caring for her all the time.
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We have been home for more than two and a half months ... struggling with other mild infections but not pneumonia, agitations though, anxiety, phlegm, and secretions. I have learned to do everything she requires, I have learned everything in order to help her, and my daughter is still surviving ...
That is only achieved with God in the heart, with the constant prayers of all of you, your words of support, your help of all kinds ... I am tired, in fact, rather exhausted, but in my heart it does not diminish the faith and strength that Only God can give.
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When a child is sick, their whole family is disturbed. The daily routine is interrupted by the continuous visits to hospitals and doctors, and the tests and tests, and the waiting and uncertainty hours become endless. In most cases it is the parents who suffer from the first moment and who play an indispensable role in this process, especially the mother, even more a single mother. When they receive the news that their child has a chronic illness, the world stops for a moment: they feel anger, helplessness and pain, a lot of pain.
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As a mother I would give anything to be the one who suffered and not her. However, I never asked God.. Why? Me? But for what this is happening? and I have had many , many answers that give me reason to continue in this Crusade as I call it. I have tried through almost 38 years with her, to maintain a positive and cheerful attitude despite everything, trusting always in the God I know. For behind a sick child, we always find a brave mother, because in order to help him or her there is no other option.
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And to help Sandra, I play, I laugh with her, so that all the procedures and sufferings are milder ( "Cough, Sandra, Cough, so that those little bugs come out, my doll") and then she relaxes, I try to transmit to her strength and energy, so that she feels, she knows that her mother loves her above all things and will do always everything possible to alleviate her pain. The doctors and nurses tell me that she is delicate and that she needs help 24 hours a day, that I have become a nurse, a respiratory therapist, an assistant, that I eliminate the woman, to be just a Mother, But who cares? they tell me she belongs in a nursing home...but.. I love her, and when one loves, you give everything for that one you love. Sandra has taught me a lot, even if she does not talk or walk, her eyes are the closest to looking at God ... She is a little person who wants to live, laugh and have fun. She is Pure and Tender.
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She does not know or understand why some people look at her with pity, or why they speak with sorrow, because she feels like another princess among the princesses in her pink room and feels loved, accepted, and happy in her own way. She is not only my anchor, but my motor, my cross full of roses, my blessing, the crucible where I'm being polished to become a better human being every day.
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Artists have come to sing to her, to play musical instruments, to visit her, to help in many ways, not only with prayers. She is the center of Her Kingdom, because she is an Angel that God has lent me. I talk to her with love and I communicate that love that is very important. . I try to always live in the present, organizing and surpassing myself, sharing not only my pain but my joys with her to the rest of the world ... without anticipating events or remembering what has already happened. NOT regretting what could not be, but what IS.
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Accepting the disease is the hardest part: it 's hard , there is no explanation, it is unfair and cruel ... but it is the most important step to start living this situation naturally. And that is just what the child needs to not be distressed more than necessary and so that he does not live continuously unhappy. My daughter is not a sick girl, she is a DAUGHTER of God with an illness. She is as important as any other human being.
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The role of parents is fundamental in the life of any child, and in the case of children with health problems even more. Being courageous does not mean not being afraid, Only God knows how many times I 've felt it, but moving forward in spite of it. That is the best help that can be offered to these little heroes, that are God's Gifts, and today we thank God for These Miracles of Life, these Miracles of Love.

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