A MOTHER'S STORY

A WOMAN'S JOURNEY

HUMAN INTEREST/BIOGRAPHY

 

 

 

 

Hello and welcome to my home on the web where I will share some insight on the extraordinary paths that my daughter, Eliana and I traveled. I hope to someday, eventually write a book about our journey, in the meantime I will use this site to tell our story with words, pictures, music, songs, newspaper articles, and excerpts of ideas I have for the book.  Our story is based on the landmark case and legal precedence we set for all children and adults with AIDS. This is not another story about AIDS. I believe there can never be enough written about the thousands who have succumbed to this disease and the millions suffering because of the toll it has taken on each and everyone of us in one form or another. AIDS is the background of my story, AIDS did not make me and Eliana famous, it was our fight for the right for all children with HIV to attend school that did that. More than two decades have passed since this killer disease first attacked us, yet we continue to struggle with it and its aftermath. "SHADOWS AND SUNSHINE" is about my three-year litigation to secure for my daughter the right to an education in the least restrictive environment, the school classroom. We won on Wednesday April 26, 1989. The next day on Thursday April 27, we walked victoriously through the school doors while our friends cheered us on. However, as we won the school battle, Eliana was losing her battle against AIDS. She died on November 27, 1989 exactly seven months from the day she walked through the much fought for school doors, where she was able to attend school for sixteen days. Eliana was not the only one with AIDS, after twenty-five years there were and continue to be others like her; following her tiny footprints into school, the work place, and with the right to live and die with dignity. This is her legacy, someday it will be mine. This is our story.

It was never my intention to become an AIDS activist; I only wanted what was best for my child. I certainly didn't intend to become a national leading advocate for enlightened awareness during the dark early years of the AIDS hysteria. But that is exactly what happened, Eliana Martinez' case was ground breaking and famous, we were famous; but in that fame it was not always joy or fun. AIDS was Eliana's disease but, fear was the disease of our community and the rest of the world. At a time when widespread ignorance and misinformation bred a hostile and fearful environment for all who were stricken with AIDS, Eliana was beset as well with physical and mental handicaps due to AIDS. Ultimately I was compelled to fight the school system, the judicial system, the medical community, and to a considerable extent, my neighbors, family, and friends--in defense of my daughter's best interests nothing could deter me. I was relentless, as only a mother possessed with unconditional love can be, as any person who despises injustice and is willing to fight against it. Unfortunately, the same overwhelming love for my itty bitty girl that was the driving force behind my strength was also for many, many years my weakness. Just as my great love for her gave me hope and endurance, her lose devastated me for fifteen years.  These days I work strenuously to live not just be alive, to enjoy the other sunshine in my life, my son, granddaughters, and a daughter-in-law who is like a daughter to me.  

 

 

It is now that I am emerging from a dark place that I thought I would never return from; I felt an unexplainable stabbing and throbbing pain merged with an emptiness that caused me to go down to the lowest pits of despair. It was a near tragic incident in January of 2004, that left me in a in a literal comatose darkness for months; upon awakening I began to realize how far away I had been for many years. My whole family were by my side although I recall nothing of that time, they came from far every weekend, while my husband and son were with me continuously. While I laid in my hospital bed I had a great deal of time to think; I finally realized that there were other feelings and individuals that had delayed my acceptance of Eliana's death thereby, not allowing me to move forward. Grieving under public scrutiny certainly did not help neither did the false accusations from HRS who yanked away from me in the most cruel manner two little girls for whom my husband and I had become guardians. They too had AIDS, but more on that later. It is my responsibility to fight against the darkness that is constantly threatening to engulf me again, I cannot dwell on the actions of others. I believed for a long time that I could never overcome these emotional obstacles, the years after her death have been melancholic and I believe it will always be this way. I miss her so very, very much and not a day goes by that I don't think of her. She was the sunshine of my life and occupied a great deal of it when she was alive and after her death. I constantly strive against my inner turmoil, but Eliana was my heroine and I have and need to always remember that I was hers'. Today I can say that I have made it back from the shadows that engulfed me for so many years and that finally I see the sunlight. The brightness is painful at times but, I can finally see beyond the shadows. I have dug myself out of my own symbolic grave.  I am striving to make of myself again what I was when Eliana was alive. I can at times laugh, feel some joy, love, and hope although at times it is for just short intervals because the numbness will resurface.  I feel that I live with a protective invisible shield that surrounds me, it is of my own subconcious makeing.  None-the-less, I struggle against the numbness and I can feel again.  I am stronger.  I am back.

"SHADOWS AND SUNSHINE," is not another story about an unfortunate child with AIDS although there can never be enough written about this enemy and all who have been infected and affected by it.  Today you can do a "Google" search or any other search engine, type in "Eliana Martinez" and you will find stories about us in the internet. I made certain that Eliana would never be just another statistic on Pediatric AIDS and that no one would, "forget my little girl for a long, long, time." It was a promise I made to her while she laid in the coffin behind me at her funeral service, it was a promise I made to myself. I have accomplished it. There were many individuals that I met during my long journey.  My son, Little Joe as I fondly call him and of course his dad, Big Joe were the ones who cheered me on the most and sacrificed a great deal of themselves for me and Eliana.  Thanks to them Eliana had a loving family, because without them nothing would've been possible.  Little Joe named his first born daughter after his sister.  There was Steve Hanlon, the attorney and friend who believed in me, who fought for me and with me.  He took into account my desires and ideas and together we became a force to be reckoned with.  There was Dr. Philip Pizza, Eliana's' physician at the National Institutes of Health at Bethesda, Maryland.  Here was a genius who also believed in me, never doubting me as an individual and much less as a mother.  You will learn that there was a short while when my new husband, Garth and I became legal guardians to two beautiful girls who also had AIDS.  We were happy but it soon became a very painful experience, because some of the enemies I had made during my fight for Eliana followed me. HRS was never my friend. But, Dr. Pizzo came through for me while others who knew me well, believed outrageous accusations. I thought I could defend myself with the truth, experience should've reminded me that many times justice is truly blind, and unjust. There was Dan, Eliana's' speech pathologist, whom I consider to be my closest and never changing friend of that time, he opened the miraculous world of communication for Eliana.  I will include in this site a short story he wrote about me and Eliana. Eliana even had her own band!  Yes, "Linda and Frenz," was the band who did several benefits to help with expenses and wrote several beautiful songs just for Eliana and even one for me after her death.  Sharon the drummer, baptized Shee-Shee by Eliana was her best friend.  Shee-Shee was thirty-three years old but for almost a year she became a little girl just for Eliana. Their love was like watching a miracle grow brighter and brighter as each day passed.  There were many people in our lives.  They were all brave because like me they took on three systems, the school, medical and judicial just by standing behind me and speaking out. Eliana's' teachers and home health providers took the stand on her behalf. AIDS experts from all over the country testified on our behalf, but a handful of medical doctors from out community were as ignorant as some of the public. You will meet them and the friends in these pages.  Many of the friends are no longer in my life for various reasons, but they will forever be in my heart and memories. It was a time of Shadows, but we were surrounded with the warmth of the love that these wonderful people gave us; just as the rays of the sun warms us each day this same warmth came from their love .

This is the story of the determination and courage I evoked from every cell of my body, accepting nothing less then equal rights and equal dignity for my daughter. It is a story of an emotional roller coaster ride of events that propelled Eliana and me from a small hospital room in Puerto Rico to the halls of the United States Congress. It set our lives of peaceful obscurity to the set of GOOD MORNING AMERICAWe met numerous people; many were famous like Barbara Walters, Whoopi Goldberg, Elizabeth Taylor, Joan Lunden, and others. The ones that left the most lasting and deepest impression were the other children like Eliana and the parents who loved them, who hoped when all else seemed lost, fought on bravely as they traveled back and forth from the National Institutes of Health in Bethesda, Maryland and to their respective states. We shared joy and sorrow, we shared our children in the hopes of saving their lives and when theirs was lost, many of us allowed NIH to perform autopsies on them, in the hope that their deaths would not be in vain but hopefully something would be learned that could change the lives of others like them. 

As the world looked on, Eliana and I traveled from Bethesda, Maryland to Tampa, Florida, from the hospital to our home, from the schoolhouse to the courthouse; from the cold, dark reality of illness and inevitable death to the warm glow of the international spotlight--for just a little while--until the twenty-seventh of November 1989.

 

Please refer to this site, "Shadows And Sunshine" in your email.


View My Guest book
Sign My Guest book



 



ELIANA