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.

Banned-books week?

Image by DML East Branch via Flickr

"Who kills a man kills a reasonable creature, God's image, but thee who destroys a good book, kills reason its self."
John Milton

Yesterday, my dear friend Kara posted of FB about "Banned-books week".

My first thought was incredulity. Am I in the 15th Century? Are people burning books somewhere and I didn't get notified?

Kara sent me this link:

http://www.banned-books.com/

I have been reading it and found that authors such as Mark Twain, William Shakespeare, Ernest Hemingway, Carlos Fuentes, J.K. Rowling, Maya Angelou, Honoré de Balzac, James Joyce, Nathaniel Hawthorne, George Bernard Shaw, Alexandr Solzhenitsyn, J.R.R. Tolkien, Gabriel García Márquez, among others have been banned.

I love to read. I usually read anything that falls into my hands, being a paper, old-fashion book or an e-book.

I have read great books and I have read rubbish. I have read theology and philosophy books that are real jewels in my book collection, and I have read things that deserve to be in a trash can.

But that is MY opinion on what I have read. I can share it with the people around me. I can recommend a book or say that it is not worth 5 minutes of your time. But who am I to ban a book?

I am now rereading Harry Potter and the Deadly Hallows, just to get in the mood for the release of the first part of the same-name movie. I learned yesterday, that I am the greatest fan of a banned book and that I have read it to my kids, does that make me a criminal, an unsuited parent?

So, as my dear friend Kara asked: what are you going to read to protest against banned books week?

Gratitude

Image by Swamibu via Flickr

Gratitude is not only the greatest of virtues, but the parent of all the others. Cicero

Gratitude is defined by the Webster's Dictionary as "a feeling of thankful appreciation for favors or benefits received; thankfulness"

Sometimes in life, feeling gratitude is hard.

Personally, when my children died, I couldn't find anything to be grateful for. I felt robbed, I felt cheated by life, by God, by my own body. Of course, bitterness took over and I had to work hard to understand that I still had a lot of things to be thankful.

I started trying to find 5 things to be grateful each week: less than one thing per day.

I have made a daily commitment with myself: I try to find 5 things, at the end of the day, to be thankful for.

Somedays I find it hard and I really have to work towards my goal. Other days, gratitude comes easy and at night, my list is much longer than I imagined it could be.

For example, yesterday I was specially thankful for:

• Being alive surrounded by my healthy, happy loved ones
• Baby pup is recovering from surgery OK
• My brother found a new home to lease and he's moving his family in at the end of the week
• Both girls loved their meal and ate better than other days
• Big boy had a great afternoon and evening: he did his homework soon and then was able to go to soccer training

I invite you to do this exercise. You'll notice that your view of life will improve considerably.

The Death and Life of Charlie St. Cloud.

Cover of Charlie St. Cloud: A Novel

The Death and Life of Charlie St. Cloud, by Ben Sherwood, is one of the books I read this summer.

The book description says: "... tells the haunting story of a young man who narrowly survives a terrible car wreck that kills his little brother. Years later, the brothers' bond remains so strong that it transcends the normal boundaries separating life and death... By day he (Charlie) tends the lawns and monuments of the ancient cemetery where his younger brother, Sam, is buried. Graced with an extraordinary gift after surviving the accident, he can still see, talk, and even play catch with Sam's spirit...

"... Luminous, soulful, and filled with unforgettable characters, The Death and Life of Charlie St. Cloud is one of those rare, wise books that reveal the mysteries of the unseen world around us, gently transforming the worst pain of loss into hope, healing, and even laughter. Suspenseful and deeply moving, its startling climax reminds un that sometimes tragedies can bring about miracles if we simply open our hearts."

As many of you might remember, I have had the honor of working with bereaved parents for a little more than 11 years through volunteering at The MISS Foundation.

"Death and Life", that is how parental bereavement feels like. We die when our child dies and we, then, learn to live a new life that is robbed of present and future, a new life that is filled with pain and sorrow, a new life that has many, many lessons and gifts to offer, as we open our hearts and souls and minds to listen, to find healing and peace and happiness again.

I've heard how many are afraid of forgetting their precious children. How people tell them that they should "let go", so their babies are able to "rest in peace". How they wished they could see, talk, hug and kiss their beautiful children one more time.

I have leaned from my own personal experience and from the wisdom shared by many that walk their own grief journey along with me, that parenting a dead child is possible.

We are able to transcend the physical realm to parent our dead child. How?

It is not easy, as we live and communicate through our bodies. The first urge a new mom has is to hug and cuddle her precious newborn. We, as bereaved parents, are not able to do so; but we can still hug them and kiss them in our hearts.

How I wish I had the power to give each and every bereaved parent a gift like Charlie's? How I wish they could find the way to talk and play and hug and kiss their precious little ones? Sadly, I can't.

The only power I have is the one my choices give me:

I chose to be present and willingly walk the grief journey of those that allow me to walk with them.

To lend a hand.

To know those precious children through the loving eyes of their courageous parents.

To do my best in the time I have on earth, to be worthy of finally hug and kiss and love my children to eternity.

Summer readings

Image via Wikipedia

After a hard, difficult year, I decided to give myself a present: a Kindle.

I bought it during the summer and it has been my constant companion ever since. It's perfect size, makes it easy for me to carry it around in my purse.

I have purchased some good books and have downloaded a lot of free ones.

I read new books from my favorite authors and got some recommendations from good readers.

I have also read some useless novels that were free, but I have enjoyed them for what they were: summer readings.

I've never read inspirational novels, but I did. Some were good enough to have in mind when my girls get older. Others were just rubbish.

In a matter of days, I read the complete collection of Jane Austen's writings. Can you believe that I never read them before?

I got a great book on suicide, specially written for survivors. Yes, I know. I am "obsessed" with death and grief and pain - as my husband says - but that is the way I am.

Currently, I am reading a book on sexuality called "What's love got to do with it?" by John T. Chirban. My kids are reaching pre-puberty and I need to be prepared, don't you think?

If you have any good books to recommend, please send me an email.

Haven't been around

This is my first post since March.

After my friend Christa died, I have been in a blur.

In just one second, life changes dramatically. I have been trying to live in the real world.

I have tried to be more present for my children. I have read a lot. By a lot, I mean 46 books during the summer.

I try to be outdoors more and are committed to stop smoking this year.

So, I am back.

Thirteen years

Image by spiderflux via Flickr

Grief changes shape,

but it never ends.

-Keanu Reeves

I remember April 6th, 1997 as if it was yesterday.

My husband had been gone for 2 weeks in a trip and I was pregnant with our first baby. I was at the beginning of the second trimester.

My mom picked me up early that day. We went to buy flowers and she helped me to fill our small condo with them. We had lunch together and we made plans for the little one I was expecting. We talked about what I would do when he was born, I was still teaching at a Law School and I was planning to leave him with her while at school.

She left me in the evening and I got ready to pick my husband at the airport.

I bought some water and sat down waiting for his plane to land. I went to the bathroom and noticed the red blood.

I called my ob-gyn and he said to stay put and called him the next day if I was still bleeding.

The bleeding got heavier. I remember watching my husband arrive and walking as slow as possible. The tears began to flow as I told him what was happening. His excited face turned into horror.

We went home and we called the doctor again. He prescribed some hormones. My husband went to buy them. They did the trick.

Around 4:00 am, I felt the urge to run the bathroom. There was blood everywhere. I called my husband and we called the doctor again.

He saw us around 7:00 am. He did an ultrasound, there was nothing left of our baby.

I was numb. We went to the movies, not wanting to think or to feel. Avoiding reality the best we could.

I cried my eyes out that day.

The next day, my husband went to work and I the pain started. I couldn't breathe. I called him and my mom. I don't know who called the dr.

I was rushed to the hospital and had a D&C done that afternoon. Part of the placenta was responsible for the labor pains I experienced. We learned from it that we lost our dear son.

Thirteen years have passed since that tragedy.

Dearest Cesar, you are always in my heart and in my mind. I love you beyond death and I MISS you beyond words. Until we meet again my dear one.