The Politics of Grieving Baby Death

The reading to follow is long. But it's a very interesting debate if October 15th or PAIL means anything to you. Formulate your stance as you read, but don't make any conclusive decisions until you've made it all the way through. I've got a few ETA highlights included in the body of other's posts--mostly because I need to make my point right then & there rather than waiting till the end to summarize my feelings. Please watch for ETA's that are mine vs those of the poster. I left original posts as is, so grammar and conceptual clarity is the responsibility of the writer--I take no resposibility for other people's ignorance. I'm still so stunned and perplexed that my head's rotating on my shoulders like Linda Blair's did in the Exorcist.


ORIGINAL POST--MISS Foundation Public Boards
Hello all,
I just read the post about Oct. 15 being made Pregnancy and Infant Loss Day. That is great and I couldn't have agreed more with the response from someone stating that we now need to get the recognition in our smaller communities. Anyway... I was wondering is there a ribbon out there that is for those who have had a pregnancy or infant loss. By ribbon I mean like the magnetic ones that you see on vehicles...yellow for support of troops, pink for support of breast cancer. Is there a ribbon that signifies support for bereaved parents?
If so please respond or PM me. I plan to make and send those ribbons to my family and relatives to wear on Oct. 15th in memory of my son. I guess that is one way to spread the word in the smaller communities.
Thanks for any info you can provide.

P.S. I am going to send one to my Dr. and nurse to wear also.


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The ribbon is pink and blue...

I am pasting Joanne Cacciatore's previous post regarding this topic:

Dear Members,
Thank you for your posts here on Reagan's proclamation.

Indeed, October is Pregnancy and Infant Loss Awareness Month as well as SIDS Awareness Month.

The MISS Foundation is holding an event in honor of children who have died before their time. I'm posting information for those in Arizona. For those outside of Arizona, I encourage you to take this opportunity to help our MISSion by using the Ten for Heaven ™ Campaign as a way to educate others.

The MISS Foundation, however, does not promulgate the "Pregnancy Loss" vernacular. Pregnancy loss has been used, historically, to minimize the overall impact (yes, a child died- not merely a pregnancy was 'lost') of perinatal death and stillbirth in the U.S. To read our position statement about the "Pregnancy Loss" part of the awareness day, you can visit our link here:
http://missfoundation.org/news/position_statement.pdf

Nevertheless, the month of October is still a good time to talk with others- educate- reach out to others- and help us with our work- babies die and we can do something to help, and I encourage you to do so.

In honor our very important and precious children- from the tinest baby to those "babies" who died as adults, for those who would like to participate, we will send 31 free Kindness Project cards, one for each day in October, to you if you send a SASE (TWO stamps please) to:

MISS Foundation
Kindness Project for October
PO Box 5333
Peoria, Az 85385


Thank you so much to everyone who will participate by helping us raise funds for our efforts, and reaching out to others in "KINDNESS!"

In memory of our beloved children,
Joanne Cacciatore, LMSW, FT
CEO, MISS Foundation


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Thanks ladies for the info. Carla, thanks for bringing to my attention the stance that MISS has taken on the Oct. 15th issue. You have now provoked me to think more on this issue. I do agree that it is a play on words and one that could cause people to not respect our losses (the loss of an actual child vs. just the loss of a pregnancy) fully. However, it may be a little step closer in getting some awareness out there. I know it may not be the wordage (Pregnancy loss) that we all want out there but some recognition/education may be better than none. Maybe at least be a vehicle that allows us to educate those that would rather sweep it under the carpet. So the question for me is do I take this opportunity and send out the ribbons to my family and friends with a note stating to also remember that it is not only a pregnancy loss it is also a loss of a child, hopes, dreams, etc. or do I just leave it alone and put my energy into creating my own ribbon and renaming it something more fitting. However, what are the chances that another bill would be passed to honor the same thing with different wording? Don't get me wrong...I understand the importance of the wording, afterall I live it everyday when I wake up and know that it wasn't just that I lost my opportunity to be pregnant but the opportunity to change my baby's diaper, read a bedtime story, rock him to sleep and sing lullabies. I live this and know how painful wording can be but will the politicians get it? If I don't send out these ribbons am I missing a prime opportunity to educate people even a little bit. If nothing else at least getting the awareness out there that it is a topic that is ok to talk about and should be recognized not just ignored. I think America needs to realize that it is not doing any bereaved parent a favor to pretend like it didn't happen at all! What to do?

NEXT POST—Author, Vickie Bacon
As both a victim of fullterm stillbirth and infant death, I have to stand up and say that I've been a very strong supporter of the October15th legislation that's taken SOOOOO LONG to finally get any substantial recognition. My feelings are simple: "united we stand; divided we fall." We can either work together to promote national awareness so that appropriate funding and research can take place, or we can quibble over wording and have no one take us seriously. I send out ribbons and copies of congressional letters every year in the hopes of getting people to open their eyes and realize that this is an issue that plagues our nation worse than breast cancer. Frankly, I'm astonished and saddened that MISS is apparently so against supporting the October Awareness cause.

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The more I ponder on the idea the more I am strongly for the Oct. 15th legislation. I have to admit that I have just recently become familiar with it but it seems like such a good opportunity to educate. We all have our own stories of people who just don't get what we are going through and to poo poo a whole legislation over wording seems a little contradictory to me. Please do not misunderstand me...I know that wording can mean a lot sometimes but I do really think that this is our opportunity to stand united and bring attention to the real issue at hand. Many times I think that all of our "political correctness" in this world smothers out the true issues at hand and when people don't know the "right" thing to say they tend to just ignore the whole issue all together.
Like 2QTS, I too was shocked that MISS was not a stronger supporter of this legislation. MISS has been a safe haven for me to come and wonderful help in my darkest hours, and for that I am truly thankful. However, I am a little surprised that MISS would not want to support this legislation which at least seems to be a start at getting the recognition all of us need.

So in my opinion, I say wear the ribbons, if nothing else it will get people to ask questions and at that point you can take the opportunity to educate people about the fact that it is not just the loss of a pregnancy but also the loss of a child that we are all grieving.

NEXT POST—Author, Vickie Bacon
Here's the ribbon pins I wear to help inspire conversation and show my support for October PAIL Awareness (Pregnancy And Infant Loss)—photos attached. To me the October 15th movement indicates that our culture is finally recognizing that we are loss victims to so very very much. For Congress to finally sign this into national legal recognition means we can finally start to see financial funding for research and perhaps even start to receive some badly needed training in medical sensitivity for something that has in years past been brushed off as insignificant. To me, if we get caught up in the complexity of the wording we only serve to delay our legislative and research funding progress. Plus if we quibble over words, it give opportunity for the onlooking world to merely see us as silly women who can't get beyond the emotionalism of our periods. There's still too much work to get done in unexplained pregnancy loss, unexplained stillbirth (SADS) and SIDS to get slowed up on semantics.

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I wear many hats for MISS and one is as an educator. I teach at hospitals and other professional organizations across the country. I am not a nurse or mental health professional. I am a bereaved mother who is very passionate about educating professionals about compassionate and culturally sensitive bereavement care for families who endure the death of a child.

Please be assured that MISS is very much a part of efforts for legitimizing this cause and is instrumental in conducting ongoing research. For those of you who participated in the MOMs stillbirth study, this study was done as the result of an idea Joanne had, was authored and sponsored by the MISS Foundation, and as far as I know, is the first and largest of its kind. And this is just one of many. I know of no one more committed to research than Joanne, not just for stillbirth, but for all psychosocial issues facing families whose child dies.

When I teach the concept of not using the terms "pregnancy loss" or "fetal demise" or any other dehumanizing terminology, it is very well received by professionals. Using these terms PERPETUATES the idea that these were not children and somehow matter less because they never took a breath. There is a huge difference in the response someone will have to the news that "a baby died" versus "she had a pregnancy loss" - and that includes legislators. It automatically minimizes the situation and the life of the child.

I just taught a class this past week for our state health department, and I can guarantee they left with a different understanding of this issue and will certainly be aware that the terms "pregnancy loss" and "fetus" and "fetal demise" can be extremely offensive to those mothers they serve. Until stillbirth is recognized as child death instead of pregnancy loss, it will never get the attention it deserves. I personally am committed to this philosophy and for that reason, my group in IL also does not participate in October events. I choose instead to spend my time twelve months out of the year educating those who need to be educated and caring for the families who need us most.

Respectfully,

Mary Geitz

NEXT POST—AUTHOR, VICKIE BACON
I mean no disrepect in my stance. I guess I'm just rather naive. Prior to reading the MISS stance, I had always assumed anyone in a loss situation would be relatively supportive of the PAIL movement. This is my first exposure to an organization who is NOT actively supportive of the October Cause--at least that's the strong indication I've gotten as I've read the MISS stance and the subsequent posts. I don't necessarily agree with some of the the reasonings, but I'm not here to modify the stance MISS is entitled to.

I guess having had a fullterm stillbirth--
with IUFD scribbled across my chart in big red letters--
by a dr who was instrumental in her death--
for a baby who never got a birth certificate--
or a death certificate--
or a dependency status on my taxes--
but instead received a land certification deed in a cemetery...
I can understand that terminolgy can be excruciatingly hurtful. And no one would agree more than me that medical agencies across the world need to be better educated on how women in my position are remarkably ill-treated.

I guess my question as I examine my experience is, is there really a way to say fetal death or miscarriage or infant demise that isn't hurtful??? That fully describes the depth & vastness of the loss???

IMO, the only way to get medical personnel to use better language, that recognizes intensity of the loss, is to get them to care. I guess I see the PAIL movement and their congressional efforts as being instrumental in the progress of getting drs, lawyers and researchers to actually care. I see the October PAIL Cause as making it possible for women like me to receive recognition for our losses that in the past were seen as insignificant (that still ARE seen as insignificant by much of the world). Heck, even my two month old daughter's death has been insignificant in the eyes of most of my friends & family. And the world at large doesn't even know she existed--let alone do they care how my life is shattered without her.

For me, I cling to the October PAIL Cause because of the pride I've felt as I've worked toward getting our nation to actually recognize MY losses. Working toward such recognition has been all I've had to hold onto. And believe me, in addition to October, I too spend the rest of my entire year walking the trenches of shattered grief and vigorous loss education. I guess in light of my recent losses, I am one of those families that you refer to as needing MISS bereavement support the most.

If I had a chance to add to the surveys MISS has apparently conducted, I'd be one to say that I, for one, appreciate very much all that the October PAIL Cause is doing for families like mine. I would want to see MISS come along side October 15th and rally together toward battling MY personal cause of pregnancy loss, stillbirth and infant death.

I say all that with genuine sincerity and no disrespect. Perhaps my insights will be helpful to MISS at some point in time. Perhaps my insights will offer comfort of some sort to someone else who wifts through these boards hoping to gather a morsel of validation over their own heartache.

NEXT POST—CEO JOANNE CACCITORE
I would like to sound in on this issue.

First, we HAVE received funding from the NIH- in 2003- specifically for stillbirth research. The trend has continued. The MISS Foundation and our volunteers were in Washington, D.C. lobbying and for years prior to the approval of the NIH budget including stillbirth, hounded the directors of NIH, MCHD, and NIMH. We have had many, many, many successes and we are, by NO MEANS, standing by watching passively as these very imporant issues are overlooked. The MISSing Angels Bill's passage (in 16 states), along with legislation that mandated tax deductions for stillbirths (passed in Az, pending in two other states and now a federal bill authored) has been as a direct result of our efforts. I submitted a manuscript to the IOM's National Academies of Science in Washington, D.C. which was then used to publish the book, When Children Die, a federally funded guide for caregivers. The inference that the MISS Foundation is somehow inactive, or standing idly by, is sheer misinformation and ignorance.

As for the "quibble over wording", we do not oppose this conceptually and have never worked against it. Instead, we offered our support to legislators for the concept, noting that we object, on the record, to the use of "pregnancy loss" vernancular in reference to stillbirth (some may not be aware-- stillbirth, even past term stillbirth- is NOT an infant death according to epidemiological record keeping in the U.S. Thus, when you say 'pregnany loss and infant death' there is no category in which to include stillbirth, except the pregnancy loss part of the phrase. Additionally (READ THIS NEXT PART JUDICIOUSLY), stillbirths are not counted in any infant mortality data. If the trend of categorizing stillbirth as a pregnancy loss continues, it never will be ). It isn't pedantic...it is wise and strategic to frame a social issue carefully, with significant thoughfulness- so yes, semantics DO matter. It is a naieve mistake to believe otherwise.

For many women, the death of their baby to miscarriage or stillbirth IS the death of a baby, not a pregnancy loss or reproductive loss. If the founding fathers of our country were not articulate in the way they authored and prepared the very Constitution of the United States, upon which our foundation was built, our country's laws, social policies, and attitudes were surely be much different than they are today.

We are committed to this cause. And to all causes that help further research, shape social policy, change culture, and support families of children who have died at any age and from any cause.

Simply put, we are an organization of principle. In a world where integrity and principle are cheap, I stand proud behind who we are.

Joanne Cacciatore, LMSW, FT
CEO, MISS Foundation


NEXT POST, ALSO CEO CACCITORE
I would also like to add a personal response that I wanted to keep separate from my 'professional' response.

During the course of my decade long work, if I met with any legislator, public health official, academic, or women's right movement leader, and I met MANY (since I've been lobbying since 1999) both on a state and federal level, and they referred to Cheyenne as a "fetus", "fetal death", "pregnancy loss", or "reproductive loss," you can bet your tail end they would have gotten an ear full from me.

Cheyenne is, was, and will always be MY CHILD. My daughter. Nothing less. Her death, for me, was the death of one of my children. If anyone implies anything else, until the day I take my last dying breath, I will patently reject it.

If anyone else wants to accept that for themselves or their child, fine. Not for me. No way. No how. Never.

My child died. That's it. The raw hurtful truth. But she most certainly was and is my child! (ETA: she had this entire portion bolded, but I deleted the bold for formating sake).


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I actually emailed Robyn Bear (CEO of October 15th) because of the wording and definitions I found all specifically said that it excluded stillbirth. I have noticed that since congress passed the resolution some sites have reworded their definitions and it no longer says “excludes stillbirth”—perhaps Robyn also contacted them to change their wording. Unfornutatly I deleted her response but she basically said it includes all deaths of children. Even though with the current wording it doesn’t sound like it does.

Stillbirth Remembrance Day is September 6th. 39 states have proclaimed (Canada also) this while 11 others have not yet done so: Alaska, Connecticut, Hawaii ,Maine, Montana, Nevada, New Jersey, New Hampshire, New Mexico, North Dakota, South Dakota.

It’s too late now for me to do anything for the 6th (I’m already planning next year) I will use the 15th this year to get the word out that our children have died, not a pregnancy lost, our beautiful babies have died!

MISSing all our children….Hugs to all of you

NEXT POST—CEO CACCITORE
The very title is exclusionary.

Unfortunately, just because someone 'says' that it includes stillbirth, does not mean that it does, or that it will in the future, unless it is specifically addressed in the language. That is why legislators have legal aids, sometimes two to five, who work together to craft and construct legislation on issues. How do WE know how this will be interpreted in 20 years? 40 years? 80 years? Every October, from this day forward, when people are promoting Pregnancy Loss and Infant Death Awareness Day, we will have to provide a cogent explanation for why stillbirth is an important social problem that also need be addressed and is not done in this language. It will be a never-ending process for those of us commited to research monies, education, and compassionate care for families of stillbirth. It has the potential to do more harm than good by perpetuating misinformation, the inappropriate use of language, and misconceptions.

For those families here, reading this, who have lost a child, please know that we work to help you and your families and the families of the future. There is no greater loss...no deeper pain. We will work to carefully ensure the validation of your child's life in the legislative and social policy realm. In doing so, we are commited to prudent thought, lasting well beyond our own lifetimes....

This is the legacy of all the children whose parents have come here for solace. Thank you for being here. Thank you for understanding our plight. And even if we do not, as a cornerstone philosophy, agree, we do stand in memory of all children who died before their time, together.

In their memory,
Joanne


NEXT POST—CEO CACCITORE
(where the quote came from, I have no idea???)

FYI-
I read the House minutes from the legislation and many of the representatives specifically mention miscarriage and stillbirth as the death of a child. Maybe the legislators get it but the doctors and professionals don't?

I know, I did too. It is good that it is acknowledged in the minutes. However, again, the title itself is what has been problematic. I will restate what I said previously- the title is exclusionary- it is neither a PL nor an infant death (in terms of classification). And unless stillbirth ceases from classification as a pregnancy loss, it will never be included in infant mortality data (the data that ultimately drives (the big dollar) research funding).

There are other issues going in concomitantly with this bill as well. Some legislators are trying to hijack this issue for promotion of other social issues that are unrelated. I've been dealing with this behind the curtains for six years...and it's caused me more headaches than I could begin to quantify.

We'll keep working diligently...and I appreciate your feedback on this very important issue.

In their memory,
JC

NEXT POST—CEO CACCITORE
I wanted to add a post to explain a few more things for those newer members.

The historical context that I've provided here, aside from my very passionate personal statement, was intended to help increase understanding of our philosophy. It was intended to address an issue not a person. These types of semantical debates are important to have as they provide a sounding board for us all.

Each of you, of course, is entitled to and respected for your own beliefs, values, and ideas about an issue here. For the purposes of these public forums, however, it is important that the official position and, at least in part, a forthcoming explanation of the thought trajectory for the MISS Foundation be provided herein.

It is important that we do something in and with our grief. When a child dies, for some, multiple children, their death leaves behind a wake of disruption and angst that is immeasurable, incalculable. We do our best to find our own feelings in this, often influenced by others- society, friends, sociopolitical systems- others who tell us that our reaction to our loss is overstated- that we're taking too long- that we shouldn't mourn for those 'stigmatized' deaths- that it's time to move on, get over it. We succumb to the pressures of others...those who try to speak for us.

In all of this, find your own voice. Don't accept anyone else's definition of the meaning of your child's death. We're here to support that whether or not you agree, fundamentally, with everything we say or do. We are here for you regardless, and share in the mourning of your precious child/children.

On that note, if you would like to and have not yet received a Family Support Packet from the foundation, please email me privately (joanne@missfoundation.org) and we will send you one. Please include your full name, address, child's full name, DOB/DOD.

In their memory,
JC

NEXT POST—CEO CACCITORE

Just a quick question - is there anything similar for older child loss? Kyle was 3 years old when he died, so not an infant. The title "pregnancy and infant loss" seems to exclude the loss of older children. Is there a special day/month to recognize them? Just wondering...

Absolutely- the exclusionary nature is precisely why we promote, instead, National Children's Memorial Day, the second Sunday in every December, signed by Bill Clinton.

This is our big event to recognize ALL children who died before their time...they are all of immeasurable value and importance to us. That is the cornerstone of who we are.

Many MISS Foundation and TCF Chapters (The Compassionate Friends) around the country hold candlelight services (lighting a "unity" candle around the world at precisly 7pm in each time zone). It is the day we all hold sacred.

ALL OUR CHILDREN MATTER EQUALLY.

In their memory,
Joanne

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I am sorry if my post offended anyone.

I do understand the importance of the PAIL movement, but I have a problem with the words.

As a mom of three children that died during the first trimester of pg (miscarriage), I have felt discriminated in numerous occassions because for some, my children did not matter because they didn't live long enough. I still sometimes encounter that hideous attitude. What does this imply? That I am not granted the right to grieve their short lives and the impact their deaths have had in my life.

Thanks to Joanne & MISS's inclusive policy, I've never felt that way at MISS. Since the first time we emailed, she made me feel as a bereaved parent. (Thank YOU!)

I've learned that words can do more harm than any weapon. I believe that there is no excuse to make anyone feel or think that their pain is not important and that the grief they are experiencing is not valid at all.

Does the PAIL ribbon serves its purpose? Yes, it does! It brings the topic of parental grief to the open. But the term "pregnancy loss" diminishes the experience, the tragedy and the impact our children's deaths have left in our lives and the world we live in. My children were not "lost", they died.

Please accept my deepest apologies if I hurt you. As a MISS Volunteer, I do understant the power of my words.

Peace,

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I just wanted to comment on how strongly I agree with MISS's stance on the importance of language and how "official" wording impacts the way society thinks about, talks about and conceptualizes issues, people and conditions. Take for example the way people talk about disability. Fifty years ago, it was accepted socially and in the medical and psychological communities to call people morons, idiots, lunatics. These were clinical terms. Since legislation gave the societal push for equal rights of people with disablities the validity they deserve, our language is also changing. The Americans with Disabilities Act would not be quite the same if it was the Disabled Americans Act. Person centered language makes a huge difference in the way people with disabilities are thought about and treated by the rest of society, not to mention the way they think about themselves. Calling people with disabilities "disabled" or "handicapped" is not accurate--they are people who have certain conditions, the condition or disorder is only a part of who they are. It's like calling a person with cancer "cancerous", which is unthinkable. People have autism, they are not "autistic", they have seizure disorders, they are not "epileptics", you get the idea. Cars and computers and other non-human things can be "disabled", not people. The language used to refer to people with life altering conditions profoundly effects the way we and they move and live in the world. It isn't an issue of being "politically correct", it is simply a public, societal acknowledgement of appropriate ways to refer human beings who function in the world differently.

Failure in legislation and public arenas to acknowledge stillbirth as the death of a child allows the rest of society to continue to feel shielded by their discomfort with the sad truth that babies die. Frequently. It is bad enough that mothers (and fathers) are made to feel that the deaths of their children (from miscarriage or stillbirth) are somehow not "real" or that the child can easily be replaced by a new pregnancy or that their grief is misguided or taking too long to "get over". This lack of acknowledgement by essentially the leaders of our country, make that kind of misguided thinking ok. Legislation frames our society, tells us what is acceptable and "right", how we are to live our lives and the language of that legislation makes up the foundation for the longterm direction in which society moves.

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I have been following this thread and have been reluctant to post my feelings for so many reasons. I know this debate is so very personal to everyone, but I am grateful to MISS for the stand they have taken. Karla your words, so eloquently spoken, said everything so well...and Joanne, I am thankful for everything you do and have done.

MISS is a place, not only for those whose children died after they were born, but for those whose children died before they were born...When Joanne speaks of 'from any cause', she is not only speaking of women whose children were stillborn, but those women who terminated their pregnancies after receiving a fatal diagnosis from their doctor's. Some of you may feel that means that those parents are not 'entitled' to grieve the death of their child...that these women have not suffered the same kind of loss. But as Joanne has said, when we begin to quibble over semantics, when we begin to compare our suffering, when we begin to decide who is entitled to grieve and who is not, we are no better than the society who treats us so callously and disregards our pain.

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I would sincerely hope that is not the case here. It would never be tolerated here, or in circle of control within my life- But, with that said-- although I personally have not had to make that decision, I have been with many families who have. Families who are devastated, families who at a loss for what to do make the best decision they can with much love for their child. Sure there is a small percentage of the population that would make this decision based on mere sex, or not wanting to have an other than "perfect child", but the real hard truth is these babies are no different than the "perfect ones", they are a child and there is no easy, or better in this equation. (ETA: excuse me lady, but there are A LOT OF PEOPLE WHO WILL TERMINATE THEIR CHILD'S LIFE BECAUSE OF IMPERFECTIONS THEY DON'T WANT TO COPE WITH--DON'T EVEN ATTEMPT TO PERSUADE ME THAT THEY LOVE THEIR CHILD THE WAY A CHILD DESERVES TO BE LOVED).

It isn't about anyone but their family at that moment in time. These children, and I say children, because that is my choice for verbiage aren't throw aways, they are real children, wanted and loved. Moms and Dads never come to this easily and they sure as hell don't leave it easily. Grief, Guilt and Shame are incredibly violent with parents who lose their children in this way and because insensitive and moronic people say and believe things- they themselves have no capacity to relate to let alone understand. There is little safety if not in a loving accepting environment and the real world somehow does not qualify, imagine that? (ETA: moronic bolding mine since I definitely have no capacity to grasp the issue; and no, I don't tolerate a mother's choice to kill her child).

Over the years Joanne and I have discussed "termination" vs "early induction" or just "induction". "Labor was induced @ -- wks gestation because of " followed by diagnosis- vs, "Pregnancy was terminated". Give these parents and their child "DIGNITY and RESPECT. We induce some 55% of our population in our facility-- the procedures are almost identical give or take a dosage of medication--- Why is it "Induction" for the term 'tired of being pregnant patient' and "termination" for the baby with problems that can't be helped? Mere 'Words' here are very powerful as well with resounding implications. In our facility we train during mandatories and we use the word "baby" not "fetus". Changing the words we use is about changing the culture and where it starts is here. (ETA: induction terminology, mere words??? inducing a baby that will live vs inducing a baby with the intention of it dying are two vastly different ideas--did this woman get her educational & ethical training from a cracker jack box!)


And that's the debate in a nutshell... Mind blowing, eh?

These are my closing thoughts. I'm posting them here & my blog; I've walked away from MISS for the time being until the October15th CEO gets back with me.

The last post on termination semantics was made by the administrator who had PM’d me. After reading her post, she became someone I never want to speak to or get to know ever in my life. She is out of her mind if she thinks she can put the word “baby” and preterm induction in the same ethical broom closet and come out alive.

How dare she claim that on one side of the argument that a child has the right to legislative life, and then turn around and take her stance with those who feel justified in terminating their very baby’s lives. I have zero tolerance for anyone or any organization that wants me to swallow pro-termination ethics.

If my child is a child with rights & responsibilities contained therein, then I have no right to take that life from them---not based on medical diagnostic testing that’s consistently and dependably WRONG much of the time. Abigail would rather be considered a "pregnancy loss" with no legal rights, than give way to a culture of death that continues to promote the deaths of children like her sister!

The MISS CEO tells us that our causes need to be carefully thought out---that somehow we’re naïve when we take sides for a cause; that if we side wrongly then we can do more harm than good. She nearly flat out claims that the October 15th cause is doing more detriment than it should. She insinuates that the PAIL movement is so poorly thought out that it will actually serve to do more harm than good.

To be certain, nothing about the MISS statement on stillbirth language is to be disagreed with. I’ve ranted about Abigail’s loss of legal personhood until I’m hypertensive. For that reason, I whole heartedly agree with their legislative goals. But to accuse the October 15th PAIL movement of undermining their mission because of language divides our cause. To call the second Sunday in December a sacred national candle lighting day, but then refuse to recognize any of the October events---omg, but how arrogant can one person or group of persons be???

Additionally, if we’re going to give legislative recognition to unborn children and then turn around and ask for the legal rights to also terminate those unborn lives, then we’re unlocking a box of legal ethics that none of the "professional" MISS organizers have thoroughly thought out!

These women don’t realize that the legal ethics and legislation that gives a family the “right” to enjoy “medically necessary” terminations is BASED on legal ethics that denies the unborn child legal personhood. Once you give the unborn child legal recognition, you will have a MUCH MORE DIFFICULT time being able to kill said child if you should decide such a “choice” is "necessary."

I’m sorry but my child is not a "choice," and I can’t have both ethical spiders living in the same bonnet.

I’ll illustrate the way I see this whole semantical debate with this analogy: splintered causes such as these are like cult denominations that exist within Christianity. There’s so much dissention going on that sooner or later the on-looking world has no respect for the cult, the denomination the cult came from, or even the very Church itself.

What pisses me off is that CEO Caccitore began her cause over a decade ago; she boasts of great legislative feats. And yet she still hasn’t managed to get all 50 states to issue birth or death certificates, and stillbirth census records are still a pipe dream in much of the nation---if she wasn't so damn nitpicky over legislative language we just might have gotten somewhere in the last decade that she's been a professional lobbyist$$$

Plus, she is more naïve than I am if she believes that her “missing angels” bill will make it anywhere if she doesn’t first take on Roe v Wade and change the entire foundation of how our culture sees the “rights” of the unborn.

I’ll admit that I’m too close to this issue. I’ve suffered both of my children being denied their personhood. I’m tired and broken. I’m I’m too emotional, perplexed and disgusted over this whole thing to be able to see the forest through the trees. I’ve written a very lengthy letter to Robyn Bear, the founder and CEO of October 15th asking her to please give some clarity to the putridly muddy waters.

To me it sounds very much like a political struggle over money. It’s like the war in Iraq. Some would say the cause is for freedom and democracy. Others would say it’s all about oil and money. We could debate for decades as to who is right or wrong. We could do the same thing with this MISS/October15th squabble too.

And don’t even get me started on people who want the language of pregnancy loss changed to tell the world that the conceptus is a child, when they still want to be able to terminate said child’s life if the "medical necessity" should make a parent feel better. You can’t have it both way ladies. Your child is either a child that deserves as much time in the womb in the hopes of it making it outside the womb, or it’s merely a fetus that drs can scrape and hack and toss into the hospital incinerator with the rest of the medical waste. I hate people and how they talk out both sides of their assess.

Here’s what I’d like to say---what would appear to be the final truth of the matter:

This whole thing between the MISS organization versus the October 15th PAIL Awareness campaign is bullshit. It boils down to money and power. It’s not about our babies or their legal rights to personhood. It’s about earning a very good living in the promotion of what would appear to be a very very “good cause”---just like the war in Iraq.

Here’s the final words I had to say to the MISS administrator who made her lame attempts to schmooze me into believing they were right and Oct15 is wrong (at this point in my experience I’m about ready to say that BOTH organizations are wrong and wash my hands of it all--this gal is so lucky I sent my PM response to her before I read her post on termination rights--she'd have opened up a can of whoop-ass, for real)...

My PM to MISS Administration
If I had known that that supporting the october15th cause would illicit such a biting slap I would have stayed silent. I was merely participating on a thread topic that touches my heart. My next post on the thread was in response to a post that I found disconcerting. I had no idea that MISS felt so adamantly. I thought my posts expressed myself as transparently and humbly as I know how, and yet in the end I felt publicly scolded and humiliated by the CEO herself.

I cannot begin to express how my own loss experiences seem to have been completely ignored through all this---passion for the voices of our children while making emotional mincemeat out of one of their mothers was not what I was prepared for today. I’m still weepy and steeped in grief’s shame spiral.

I’m sorry, but I must defend myself and say that I’m not playing “Olympics” in this issue. In fact, I’m still very perplexed as to where or how this became a dichotomy of issues to be sided for or against. Seriously, I naively assumed from my very first post on the subject that we were all on the same side, and yet it got reiterated again and again through the course of the thread that to associate with october15th undermines the MISS mission.

But I thought we were all loss moms. In the last 2.5 yrs since I’ve been a loss mom, I’ve never encountered any boards or support groups that didn’t completely support the Pink & Blue movement. I was stunned. I’m still rather perplexed as to how this ends up being about “differing perspectives.” I honestly don’t understand how the Pink & Blue ribbon cause ends up creating sides. I’d never heard of such a thing until today. Maybe that’s why I feel like I got spoken to like I was just one of the “ignorant public” and not with any sense of loss compassion. I’m still relatively new to this loss mom life of mine.

In my experience, first it was Abigail’s stillborn body. She didn’t qualify for personhood because she never breathed. And then came my second daughter who was born with a chromosome disorder known as trisomy 18. Drs called it “incompatible with life” and if they diagnose it prenatally, they counsel the parents in termination 100% of the time---never mind the myriad of children who actually are born and thrive. Many parents elect not to terminate based on the fact that their child is still their child. Many many many more terminate their trisomy 18 babies every single day---mid to late second trimester ABORTIONS.

When my daughter was born and her sweet sparkly beautiful face lay in my arms, I saw the entire evil and cruel world that would have killed her in a heartbeat and not looked back. They would have terminated her imperfections and tried for a better baby. They would have scissored her brains out in a partial birth abortion, or chopped her to bits with a D&E. Or with a false sense of being “humane” they would have “induced” her preterm living body--taking her life support system (her mother’s body) away from her. She would have either died in the birthing process or shortly thereafter. After all, she would have been too young & frail to survive the experience. Talk about needless torture---parents doing such things to their child so he/she can struggle to breathe for a few minutes or hours. Some drs would have given the baby a fatal drug-induced heart attack prior to indcution to avoid the infant's struggled gasps for air; to assure the child would be stillborn. How is that possibly being less cruel and supposedly sparing a child from potential suffering???

The bottom line is that to the medical world, my daughter was in fact, less of a person than my Abigail turned out to be in her stillbirth. You see, Anne was defected and by cultural and medical standards, worthy only of the abortion slaughterhouse---a culture of death that will never be taken down.

I’ll tell you quite frankly that I had critical nightmares for many weeks after Anne’s birth---when my naïve eyes were first opened to the vast & horrific numbers of pregnancy terminations. Nightmares of “ted bundy” sorts of people snatching her away and tearing her body to shreds---just like my dr would have recommended doing to her had we learned of her trisomy prior to birth.

To make matters worse, the hospital where Anne was born brushed her off for dead once her trisomy was confirmed. They didn’t give a damn whether she lived or died. In fact, they had her caulked up as dead before she really was. I went on some months later to read a medical ethics paper from the UK whereby the professor espoused the notion that we parents have a RESPONSIBILITY to terminate the defective child.

Well, we need to need to make sure that we console women with RPL (repeat pregnancy loss) that they’ve done their "ethical duty" by getting rid of all those defective children without needing an abortion. We can pat them on the back as having done a good job for not carrying those faulty pregnancies to term.

The bottom line is that not only was my stillborn daughter not entitled to personhood, neither was my living daughter. She was a medical defect to be discarded into the rubbish heap---I just didn’t do it at 25 weeks when I should have.

Ultimately, I have gleaned zero “professional” support for the deaths of my children. I have struggled miserably to move forward in the nightmare that has been mine these thirty some odd months. I’ve struggled with a lifetime of infertility only to bury two thirds of my children. From the cruelty of humanity’s mouth, I’ve heard a million different varieties of “it’s for the best”---as if to say Anne was SUPPOSED TO DIE and the world’s a better place because of it. I’ve heard innuendos from dozens of people that slap glaringly in the fact of how terrible it is to have a defective child in the first place, so it’s better that she’s gone. What’s to miss; she was retarded anyway, right?

I personally know of several women who killed their trisomy 18 child---if my child had been theirs she would have never gotten hugged by her mama. She would have met with a cold cruel induced death instead of the soft peaceful passing that she got. How am I supposed to go through the rest of my life knowing that most of the world would have killed my child---my dr, my neighbor, my church member, my friend all would have killed my daughter. No, she may not have built bombs, modeled for Victoia’s Secret or wasted gobs of newsprint vocalizing political propaganda, but she was the sweetest most sparkly little girl I ever knew in my entire life.

But ya know something, I didn’t come to MISS to argue about whether someone has to wear a pink & blue ribbon throughout October or not. I couldn’t care less about ribbons---or October. I didn’t make my posts defending PAIL as an effort to “win” or prove my perspective was the “right” one. I came to MISS because my life has been shattered by baby death and I’m in desperate need to find people who will actually care about my fragile broken life. Believe me, I’m not as passionate about my children’s voices as I am about finding some sound support for my own.

Thank you for taking time to listen. Hopefully, I’ve conveyed the genuineness of my transparently genuine heartache and the depth of anguish that has befallen me as a result of sharing myself on this thread.

MY EMAIL TO ROBYN BEAR, CEO OF OCTOBER 15TH
Hello Mrs Bear
I need your help in understanding a conflict that has left me feeling dumbfounded. First, let me introduce myself. My name is Vickie and my Abigail was born at rest on December 6, 2003. She was 39wks gestational age when she died in utero. I later went on to have another baby the following year. She was born at term with a heart defect caused by trisomy 18. She died at 61 days pediatric age.

http://www.caringbridge/visit/abigailfrances
http://www.caringbridge/visit/anneelisebacon

Ever since I heard of PAIL awareness, I've been an avid Pink & Blue ribbon supporter. I've supported the October15th cause with my whole heart. I've bought ribbon pins and sent out copies of the congressional letters. I've linked your site to my buddy boards where a group of us stillbirth moms meet for support. I've bought a license plate frame for my car, and even had my dear dear friend AC come on board in your gift shop. She makes the beautiful garden stones and tin shadow boxes. In fact, the photos you have in the gift shop of A's garden stones are the original prototypes that she made for my Abigail and Anne. I've been so proud to see them displayed in your store. I've even seen them on other sites that link back to your store. It does a hurting mama's heart proud to be so intimately associated with October15th.

But here's my problem. I recently joined the boards at the MISS Foundation. I'm a newbie; a clueless silly mama not knowing anything about them. Another newbie posted a thread in reference to wearing Pink & Blue PAIL ribbons. One of the MISS coordinator gals jumps in and posts the "official MISS Foundation stance." They do NOT support the PAIL cause. I was very very shocked. In all my months of being a stillbirth mother, I'd never ever come across anyone that didn't support the PAIL awareness campaign.

So I posted a few sentences about how I'm a PAIL ribbon supporter, and I posted pictures of my pink & blue (and pink & black) ribbons that I've had made for both Abigail and Anne. Another gal comes along in support of my words, and that ended up being all that was necessary to open up a full fledged debate.

The MISS CEO herself came swooping down and let anyone who was a PAIL supporter have it. I never knew anyone could be so angry over the phrase "pregnancy loss." In the meantime, I received a private message from one of their administrators--she partially supported my points and partially told me that I was remarkably ignorant if I really believed that the October15th cause was actually going to do anything but undermine legislative progress for our stillborn babies.

Again, I was stunned. Not only was I talked to like I was a complete moron in terms of understanding stillbirth, but I had never in all my experiences ever come across such a rabid group of women so willing to work against the October 15th cause.

I slept on it all weekend and then went back to the MISS thread to see how things had progressed. Of course the CEO had taken over and had many posts reiterating that their legislative progress is being undermined by pregnancy and infant loss language. One poster said that stillbirth is completely left out of the October15th legislation, and that the official stillbirth recognition date signed into action by Bill Clinton was September 6th. Total news to me.

So ultimately, I've just learned that October 15th doesn't "really" support stillbirth recognition at all, and it's very unlikely that any of the PAIL legislation being worked on will ever give her stillborn fetus any sort of legal personhood. Abigail is neither a pregnancy loss nor an infant loss--she remains in some limbo where neither doctors nor lawyers seem to care.

As a loss mom, I've had my rose colored glasses slapped to the ground by a number of "awakenings." I learned after Anne was born that doctors would have recommended her for termination rather than advise that she live. My cluelessness as to what it meant to be pro-life was awakened by the fact that my daughter was a living human being who deserved a right to live. Few are those in the medical ehtics world who would agree. Even a MISS administrator posted this morning that a woman's right to chose to terminate her child's life took precedence over that child's right to be called a child. Here's this huge national foundation arguing against PAIL because the language doesn't give voice to our unborn "children", and yet they too undermine the child's life by espousing to the termination of that child if deemed "medically necessary." And then to find out that my beloved October 15th isn't really out there supporting stillbirth. I'm so lost and confused.

Please tell me what it is that October 15th is really doing to support near term or fullterm children that die prior to birth. I've read the mission statement dozens of times, and it would appear true that "pregnancy and infant loss" eliminates stillbirth entirely from the picture. Have I been deceived?. I've waved the October 15th banner for nearly three years now. I've sobbed a million endless tears for this Cause. But now I'm being told that I'm "ignorant" and "naive" for believing in the PAIL "propaganda."

I went to the National Society for Stillbirth to find some answers. I only became more disheartened. I give money to their cause too, but I question whether that's really wise. I'm heartily distressed over all this. The SADS organization wants to follow the MISS model, yet I've become very concerned about the political back stabbing that's grown to be more important than national support of stillbirth recognition.

I know that my daughter is not "missing" nor is she an angel. She's a dead human being, alive in Heaven, who received no legal recognition on earth for her birth or her death. She does not and did not count in anyone's statistical research, and no one is concerned with why she died. I assumed when I hooked up with PAIL and October 15th that I was supporting a cause that was dedicated to my issues. Now I'm being told in very hostile (aka "passionate") terms that I couldn't be farther from the truth. My grief is remarkably exacerbated knowing that such dissention exists between organizations that in theory should be working together. Please tell me what it is that October 15th has done (or hasn't done) that evokes such fury in the MISS leadership. I've never had anyone in all my months of carrying this loss trauma talk to me as if I was so utterly clueless & stupid.

Thanks for reading and perhaps taking time from your busy schedule to help me understand this dilemma better. Thank you for hosting my Abigail & Anne's stones in your gift shoppe. Even though I have the originals right here with me, I often pull up your gift shoppe page just so I can see them looking pretty for the world. They are my children.
They are not lost; they are not missing--they are in Heaven being carefully tended to by the Master Himself.

My God Bless Your Week,
Vickie Bacon




Anyway, I’m not sure where I stand--I've got one foot in each pond--rather like my position on the war in Iraq. Clearly, I’m on the side of pro-life. Most likely that philosophical ethic belongs to neither organization. Everyone’s got their version of pro-abortion that they work into their thinking. The worldview of our nation is so tainted with the culture of death that few really stop to ponder how stained our thinking has become.

Ultimately, I don’t care how stillborn Abigail was or how much she deserved to be recognized as an infant--she certainly was no "mere pregnacy loss" as the medical ethics committees would render her to be. I know beyond a doubt that she wouldn’t want me to compromise Anne’s “voice for life” all for the sake of a birth certificate she can’t use.

I’m still dumfounded that a group can espouse to stand by an ideology that calls every pregnancy a child, and then think they can also terminate said children they claim to defend--talk about the grandest oxymoron I've encountered in a very very long time. And they called me ignorant and naïve.

Let me tell ya, I’m really missing that
quiet,
bread baking,
quilting,
home school studying,
cozy cabin gentility
of "set apart" Biblical living
that I was so looking forward to continuing on with back in the October of 2003.

Lord, I never ever wanted to be a politician...