“There are two kinds of death: concrete and symbolic. The actual death is when a person dies and disappears forever. Symbolic death, or death in life are ruptures that occur during the life of the human being and trigger the same concrete death mourning process. ” Separations, job loss, retirement, moving cities, mutilations, among the various forms of symbolic deaths with which we are faced, one is particularly practical in the life of psychologist Elaine Gomes dos Reis Alves: the death of  a conceived child. Mother of a disabled daughter, Beatriz, now 29 years old, Elaine lived in real life the “unauthorized” grieving: “When an idealized son dies, feelings come up, anguish, despair, fear, sadness, grief.

“Describes the psychologist in an impressive statement on the subject, which is further surrounded by taboo than mourning the concrete deaths. “The child is there,” he goes on. “Yet, he is another one, completely different from what was desired, but he is there, and the couple (often only the mother) does not have permission to cry and mourn for her son who died (…) The most common charge is that immediately parents accept, love and care this “unexpected child,” this child that wasn’t expected, idealized or desired

In order to understand the death of an idealized child  and not judge parents who go through this, we reproduce here some excerpts from Dr. Elaine touching testimonial, published in an academic journal

The beginning

I had a perfect daughter. Each one who came to visit me in the hospital, was a dream to share. When my cousin – and close friend – came to meet the baby, we both organized her 15-year-old party, such was the confidence that all would be well. Beatriz was always very friendly and smiley,  she began to sit and crawl between six and seven months and her development was normal up to eight months. At this age, her development stopped. With a year she still emitted a guttural sound, there was no “papa” or “mama” and she was still far from walking. At 8 months I have outlined my comments and questions to the pediatrician who found too early to worry and asked to wait until she completed one year. Despite the fear, I clung to it and waited (…) (…) Beatriz began physical therapy at one year and two months, occupational therapy  at one year and four months and speech therapy at one year and six months. She had not even medical prescription for these treatments and I had to sign a “disclaimer” as if such procedures’ were not necessary. “

In the second year of her life, I went to otoneurologists, speech therapists, geneticist, some neurologists and other professionals. Several tests were performed without any accusing anything. Most professionals considered that the child was in the average and that the mother was anxious. Finally, one year and eleven months, developmental delays were considered: computerized tomography and magnetic resonance imaging were requested and … nothing happened. Normal tests. There was only one detail: at two, Beatriz was not moving and did not speak.

Grieving Process

When I began to realize a deficit in the development of my daughter, I got into mixed feelings. I wanted to believe in doctors and accept that everything was normal and had a huge fear of wasting time. I felt anxiety, sadness,  frustration, fear and pain. A pain in the chest a bottomless hole that I could not explain. The impression was that someone tore my chest, squeezing my heart, lungs and stomach against my ribs and, despite that opened and exposed hole, no one saw or was careful. I wanted to share, but there seemed to be no one willing to listen, after all there was always someone with a “real problem.”

At that time, I got to know the book  “Anjos de Barro: histórias de Pais e Filhos Especiais” (Clay Angels: Parents stories and Special Children) – José Maria Mayrink, and the first story I read was a girl named Beatrice. ‘ Would it be a sign? “. I cried all night long. Thereafter, I joined in the APAE Library and began to read testimonials from parents and books about having a special child. And how I cried! I remember saying to her; “I love you, but I do not accept that you don’t walk and talk.” At night, when I lay down, I prayed asking that when I woke up, Beatriz was like other children her age. The next day, nothing had changed.

The second and third years, I hardly saw going by because I was too busy racing against time and believing that if I tried hard enough with all the treatments available, I would recover wasted time. This is the bargain phase according to Kübler-Ross (*) and I also call it miracle phase. I am not ashamed to say that at that time I did almost everything they said it would be good – conventional or not – provided it was not too risky. It might seem the greatest of all the nonsense, but when I was alone I thought, “What if it is true and I didn’t try it?” then there was me, literally in search of miraculous prayers of all religions, faith healers, healers of all kinds; (…) I also met some swindlers and these charge an absurd price.

There is also the question of guilt. I wondered what could be done. Health professionals asked if I had done or taken something, if I was not forgetting anything. My mother also wanted to know what I could have done, and most people, known or not known, also asked what had happened during pregnancy. In other words, it was my fault! I wanted to talk about what happened and wanted people to listen, validate the pain I felt and gave myself some comfort, but I often said things like, “God does not give anything that you can not bear”, “God chose you”, “it is your burden”, “you chose it before birth.” In other words, it was a gift!

The feeling was total loneliness. I was also tired, but I could not stop, could not waste time. On the other hand, I wanted to lie in the dark with closed eyes quietly, but it was not in the script. The warm welcoming took place in the waiting room of  the clinics that Beatriz attended. While she was in her therapies, I waited with other mothers. There, we talked about our experiences with doctors, treatments, families, schools and society, frustration, loneliness, achievements, feelings, prejudices,  herbs, recipes, husbands, children, tours, finally, the world in which they lived and what these families faced. I met people who knew what I felt, respected and heard me. There, I saw children in conditions that I considered better, similar or worse than that of Beatriz, and mothers who were at different stages of coping that reality.

It was in the waiting room that I realized and got really aware that I have a daughter with disabilities. The waiting room and those women strengthened me and I managed to emerge from the mourning for my idealized and dead daughter. There I “expected “and gave birth to Beatriz.

(The complete testimonial of Dr. Elaine Gomes Alves dos Reis was published in The World of Health – scientific journal published by the São Camilo University Center)