The story behind...

... "When the Unthinkable Happens: The Death of a Child"

It was 1999 and we have already lost three children and had a blighted ovum pregnancy.

I was grieving so hard and had so many shattered dreams that I did not know what to do with myself. I was teaching US Law, but the rest of the time, I wallowed. 

I spent my time teaching and volunteering for the MISS Foundation, but I truly needed something else to look out of the grief-bubble I was living in.

My dear husband, knowing myself more than I do, told me that he would make a financial effort so I could go back to school. I decided to enroll in a Master program which would help me help others in grief. I was accepted to the Master in Family Sciences program at the Pontifical Institute John Paul II for the Study of Marriage and Family.

On August 1999, I went back to school! I had classes every Thursday and had lots and lots of reading and research during the rest of the week. I can honestly say that I enjoyed every minute of it, though I confess that I had some trouble with psychology. My favorite subjects were theology and philosophy, bioethics and, obviously, law.

In late 2000, we were directed to begin working on our dissertation. By that time, I knew I wanted to write about child death, a topic close to my heart. Not only because of my personal experience, because reaching out to others in grief became my life-line during my worst moments.

I had read many, many books on parental grief by then, all of them in English, but none in Spanish. The lack of validation of my feelings, emotions and thoughts, in my own language was definitely a strong reason to sit down before my computer for hours at a time, after spending many, many hours reading and researching. Thus my self-help writing journey begun.

I began writing about life and death: when does life begin and what are the signs of death. Then I did write about grief and its "stages". The theory of well-define stages and the true mess real grief is. 

I tried to explain to my target audience - bereaved families: moms, dads, siblings and grandparents - what to expect after a child died. I tried to validate all the craziness and the excruciating pain and the deep sorrow and the numbness and the rage and the guilt. 

Then, I tried to tell society in general and extended family, friends, medical personnel, teachers, priests and pastors and rabbis what does help and what does not help the bereaved. Here, I did not only used the extensive biography I had read. I used my experience as a MISS Facilitator, a HOPE Mentor and as a bereaved mom.

I learned along the way that, though society gives parents the "right" to grieve depending the age of the child at the time of death, no matter the age or the cause of death, parental grief has more similarities than differences. I have learned that the bereaved community is compassionate and caring and supporting. 

I have learned so, so much from each and every bereaved mom, dad, brother, sister, grandparent, aunt, uncle, friend that I wish I had the opportunity to thank each one, individually, for being the best of teachers.

I know I say this a lot, but I am truly honored and grateful that I have been given the chance to reach out and share the love and the pain and the MISSing and the remembering of each MISS member and bereaved parent I have met along the way.

Each child has a special place in my heart and I hold each family close in my prayers for gentler days, as it is the only thing, other than listen and be present, that I can do for them.

This book was finished in 2001. Though it spent most of its time since then in a drawer and in my computer's memory, I have added to it now and then. I am finally able to publish the Spanish version on December 2012 and I hope soon, I'll be able to publish the English one. 

Position Statement of the MISS Foundation Regarding "Pregnancy Loss" Campaigns Co-Authors, Dr. Joanne Cacciatore & Kara LC Jones Whatever is unnamed, undepicted in images, whatever is omitted from biography, censored in collections of letters, whatever is misnamed as something else, made difficult-to-come-by, whatever is buried in the memory by the collapse of meaning under an inadequate or lying language – this will become, not merely unspoken, but unspeakable. -Adrienne Rich Definitions for purposes of this document: Stillbirth: The intrauterine death of a baby after twenty completed gestational weeks until birth. Stillbirth is always a naturally occurring event and often occurs at or near full term for no apparent reason. Miscarriage: The intrauterine end of a pregnancy anytime from conception to twenty completed gestational weeks. Miscarriages are also spontaneous, naturally occurring and unpreventable events. Qui tacet consentit: In response to the promulgation of the term “Pregnancy Loss” used in Awareness Campaigns: The MISS Foundation has been asked its position on the Pregnancy and Infant Loss Awareness Campaigns. Several years ago, after careful consideration with the bereaved parents advisory board, the MISS Foundation made an executive decision for our organization not to utilize the term “pregnancy and infant loss,” but rather recognize October as Infant & Child Death Awareness Month. We use this language to describe all the awareness campaigning we do for the month of October and on the day of October 15th. The key reason relates to the use of the vernacular "pregnancy loss" when addressing the issue of a sudden, intrauterine death of a child. Language chosen to describe social problems is very powerful. Historically, euphemisms are used to sanitize social problems. Yet, if we do not call it what it is, in the case of stillbirth, the birth of a dead baby, society will never pause to pay attention and the 'cause' will take longer to establish firm roots and gather the necessary support for research and improvements in care. For most of our members, the use of the phrase “pregnancy loss” was not an acceptable description of their personal, traumatic losses. Rather, the language, for them, felt dismissive. In dissecting the phrase, there is an inference that a child, in fact, did not die. Rather that a pregnancy was "lost." For many women, the phrase decries and derogates their very personal tragedies: they did not lose a pregnancy. Their babies died. We also found that even some women who have experienced the loss of a child to miscarriage also reported feeling offended by the term “pregnancy loss.” Author and artist Kara LC Jones says, “I did not lose my children or my state of pregnancy in a crowd. With my stillborn son, I had a c-section. With my miscarried son, I was in full, natural labor for two days before he was born. When I chose to raise awareness about the life, death, grief experiences, I wanted to use a term that gave full gravity to what happened. Infant & Child Death Awareness expresses my experience, because so much more happened here that is deserving of honest language.” Scientists illuminate some important factors to consider when addressing the issue of perinatal death: 1. Loss is complex. The responses to loss are even more complex. Bowlby’s theory posits a continuum of responses seen in parents who lose children to death more closely associated with the degree of attachment than "time" spent with a child. In other words, quality of the attachment not quantity of the attachment informs the psychological responses of the bereaved. Ambiguous losses (Boss, 1994) may incite "complicated mourning" and these are often the most difficult to resolve. There isn't 'more love or attachment,' rather, mixed or ambiguous emotions, either from internal or external sources (meaning that often society assigns taboos and stigma to some losses), that exacerbate the parent's response (they know they feel overwhelmed, bereaved, and desperate but may not feel their feelings or loss are acknowledged and they struggle for validation from the 'social group' which they often do not receive). These are often disenfranchised losses such the death of a "less than perfect child," AIDS deaths, deaths by suicide, stillbirths, and even some highly conflicted relationships that end in death. 2. Stillbirth has been empirically demonstrated to evoke strong and enduring psychological distress and emotional responses in women, similar to any child's death. In addition, there is a physiological paradox stemming from the many physiological responses that occur during the final trimester of pregnancy and in the postpartum period to prepare the woman's body to give birth and to facilitate the many changes that occur, including pain receptor preparation. These nuances coupled with the final outcome, a dead baby, at the end of the birth process, seems to incite an impasse for many women. Her body knows she gave birth and responds accordingly however there is no baby. 3. Miscarriages evoke a variety of responses in scientific data. The continuum ranges from grief responses similar to any child's death to little or no grief responses. There are many hypotheses in the scientific world about this phenomenon. One posits that women who conceive easily and are younger handle early miscarriages "better." Thus, older mothers or the women who endured years of infertility might respond differently. Some studies demonstrate that women with unplanned pregnancies who miscarry report feeling "relieved". Other women who were not particularly trying to conceive but who were happy with the pregnancy appear to be somewhere in the middle of the continuum. Another hypothesis has to do with spiritual beliefs about when life begins. For women who believe enthusiastically that life begins at the moment of conception, the miscarriage, at any stage, is the death of their child. For another woman who may not hold the same spiritual values, or who may not "attach" early in the pregnancy, the miscarriage may be viewed as a "pregnancy loss" and not the death of a child. Yet, even in these studies, there are varying responses. Because love and loss are so nuanced and complicated, and because language is so powerful, the MISS Foundation chooses to channel its energy into campaigns that align with our philosophies about supporting women, men, and children after the death of a child at any age and from any cause. Indeed, love – and sometimes predictive grief- are not always measurable in a scientific test. There is never a good age or a good time to lose a child to death. Whether at birth, one year, ten years, thirty years, or sixty years, it is simply out of life's natural order. Simply, the death of a beloved child is life's most painful experience of suffering. This is the cornerstone principle of the MISS Foundation. © 2010 by the MISS Foundation All Rights Reserved Do not reprint or reproduce any portion of this document without prior written permission. Reproduced with permission.