I have a 26 years old daughter: Sandra, who was born with the RETT Syndrome. She is profoundly mentally retarded with multiple physical disabilities. When she turned 15, I didn’t know that she would live for another 11 years; so I celebrated a religious gathering for the entire community of Miami, in Florida. This was my invitation:
“Miami, February 2, 1995,
Dear Parents and Friends who read this letter:
This year, my daughter Sandra will turn 15 years old. On the Fifteenth birthday we Hispanics present our young daughter to society, a debutante. Some parents do not have a party for them, but still make plans, a trip, or a celebration of some sort. There are reasons to celebrate such an event. That beautiful and little baby girl has become a young lady.
Some years ago, I attended a big Fifthteenth birthday party for the daughter of one of our friends. During this celebration, I couldn’t avoid thinking of Sandra, and of the impossibility of celebrating anything for her, much less a party. It was not because of financial reasons, but due to Sandra’s neurological condition: she is a profoundly mentally-retarded girl with multiple physical handicaps, home-bound in a wheelchair. A girl with the RETT Syndrome.
Life gave me a pretty baby girl. She was beautiful, so white and soft, the girl I always wanted. But life is full of surprises, and that pretty girl less than a year old, was not interested in her toys. She hardly moved around her crib. She looked like a toy herself. I didn’t know that she had been born with a rare disorder that only affects girls, and as I would discover later on, she was not developing normally. She has never walked. She has never stood-up. She learned to sit down by herself at two years of age, but doesn’t do it anymore. She never talks. She never says anything, except sounds and crying, just like a six-month old baby.
For more than five years, I didn’t know what was wrong with her. At six, she was diagnosed officially by her doctors, with Rett Syndrome (her Dad, who is also a physician, had already given the same diagnosis, the previous year). The only thing left for me to do then was to write letters to her. Letters in which I talk to her and she “talks” back to me. Letters that carry a message. Letters from a mother’s heart grieving her pain. Yes, because a child like this represents a broken dream, a lost illusion.
At the age of seven, she started having epileptic seizures. She has undergone several surgical operations. She has a bad scoliosis on her back: three big curves on her backbone distort her posture. She has had operations on her feet. She has worn casts and orthopedic devices. She has been hospitalized in several occasions, has had medical tests and investigations. She has had problems with digestion. She has had dental problems and had surgery performed in her mouth. Sandra behaved then and still does like a baby. At 15, she behaves like a nine-month old baby. But now, she is a young lady, and her care becomes even more complicated with puberty and adolescense.
However, with Sandra, I learned to understand and accept the unacceptable. To have patience, to smile in spite of pain. I learned to judge less, and to love and accept more. I learned the real value of life. I learned to live each moment with quality. I learned to transform destiny. I learned to decorate the ugly. I transformed my empty cross in a cross full of roses. I learned what it is to have God on our cross. I started to build and to plan other illusions. I started dreaming different dreams for her. Whatever was sad, terrible, painful, was dressed with a touch of angels. Whatever stinks started to smell with the perfume and scent of flowers. I learned all the little things in life that bring so many blessings and happiness. I learned to differentiate the important from what is not so important.
Taking care of her is not the most fascinating thing in my life. Sometimes it is very difficult, others impossible to see something good in it: that I will never suffer seeing her falling, failing; She will never disobey me, or will make a mess of her bedroom; She will never hurt or humiliate me. She will never have drug addictions. She will never be a problem child. She will always be love, purity, blessing. Her smile is the smile of an angel. The whiteness of her face reflects her purity.
She loves unconditionally, totally. She trusts absolutely in my love and care. She has a beauty and an inner warmth that is not from this world. Her smile and expression give me the strength I need to face this life full of uncertainty. With her I have learned to smile in the presence of crooked, hard and difficult situations that life has presented me.
Any of you, who have a “normal” child, would be planning for that big party. I have started my plans for another kind of celebration. One in which I can really share the happiness of having her in my life. Support me in celebrating these long and difficult years, thanking God for the privilege of having her for such a long time. Baby girls with Rett Syndrome don’t have a definite longevity: they can die at any age, while being babies, or at any time, during a seizure or sleep. Only God knows!
I want to celebrate, and accept her coming into my life, in your company. You who could make other plans so different to mine. You who know what a normal baby girl is, a girl with whom to talk and to plan.
Sandra leads the way, she is my inspiration, I follow. All the pain I feel for her, is nothing more than all the love I have for her. I take care of her, but she takes care of me. Her presence is a constant reminder of God’s love for us.
She is my gift, not just my cross and my pain. To have her has been special in spite of everything. It is not everyday you have an Angel living at home. Come and celebrate with me. Help me decorate my broken dreams, my sad reality. I promise you that looking at her smiling face, will give you reasons to thank God for having come.”
by Xiomara J. Pages
