MISS Foundation Email

Dear MISS Members,

Elisabeth Kubler Ross, M.D. spent more than five decades devoted to helping the dying and the bereaved. She has helped countless people, and our entire culture, in coping with death, dying, and mourning. Much of her life was devoted to working with dying children and their families. She is a thanatological icon and hero.

Elisabeth was also a friend to the MISS Foundation, a cherished advisor. She was my beloved friend and mentor.

In honor of her upcoming birthday, July 8th, the MISS Foundation would like to offer a "One who soars (tm)" band to our members.

You can wear this in honor of your beloved child, and to recognize the legacy of Dr. Kubler-Ross' work.

Please send a SASE with two stamps to:

MISS Foundation
EKR Legacy
PO Box 5333
Peoria, Az 85385

May your Memorial Day weekend be filled with loving thoughts of your children. We also recognize those young men and women who have lost their lives in service.

"The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people
do not just happen."

Elisabeth Kubler-Ross
July 8, 1926 to August 24, 2004

Let us never forget the gifts she left this world

Very Sincerely,
Joanne Cacciatore, PhD Cand, MSW, FT

New Blogs Submitted This Week

A warm welcome to the following Bloggers:

• Love Notes
• A Mending Heart?

Globe and Mail: Burying the unborn

CAROLYN ABRAHAM
From Saturday's Globe and Mail
May 26, 2007 at 2:24 AM EDT


On the afternoon of Feb. 3, 25 people gathered in the chapel of Smiths Funeral Home in Sarnia, Ont., to honour the passing of Angel Lynzey Burden.

The community sent flowers and cards of condolence. Angel's ashes sat on a table up front, in a decorative urn half the size of a coffee cup. (continue)



Note: This article will only be available online for a few more days, possibly a week. If you are not able to access it via the link provided, please contact us so we can email electronic copy to you.

Friday Blog Roundup - Now What?

Aside from all the obvious horrors of miscarriage, infant loss and the sometimes resulting struggle to conceive, there's the quiet little sneaking nastiness of uncertainty. It's the feeling of having no control - of being unable to move forward and unwilling to move backwards. Of being caught in limbo.

Plans are what you used to make. After a loss, you realize that plans are what people who don't know any better make. Well, people who don't know loss, anyway.

For us there's no such thing as planning to have a summer baby or waiting until after a wedding for fear of being a hugely pregnant bridesmaid. There are no guarantees anymore. There never were, I suppose, but we just didn't realize it back when the world made sense.

We know all too well what happens to the best laid plans, and because of that we can never look at pregnancy the same way again. Shattered innocence and the inability to plan with any certainly. That's what our reality is. It's just one more way your world has changed. One more thing to make sense of. One more sorrow to get used to.

Chris at Love, Hope and Faith Talks about this very thing.

"From as far back as I can remember I have always had a plan of some type. Everything I ever did was based on something else that would follow down the line."

She says it's unnerving to be out of ideas. Unnerving indeed. We are used to working hard to achieve the ends we desire, and suddenly no amount of work seems to make a difference. Life, Mother Nature, the gods, fate, the universe - something had plans of its own for us.

So, I suppose, the trick is to adjust. To use that determination to figure out the best way for you to survive and, eventually, to really and truly live again. And for everyone it's different - whatever works for you is exactly what you should do. Reading blogs of other mothers and fathers can sometimes give you incredible help and insight as you start your healing journey.

For instance there's a very beautiful post at Just A Cloud Away that urges us to watch for signs from our angels.

"The message could be a butterfly sitting on your nose for 45 seconds, an unusual, long, quiet stare from one of your other children which traveled to the depths of your soul, hearing the same song played at your child’s memorial service, seeing the first letter of their name formed by 2 airplane smoke trails, or a painting of a butterfly in the labor and delivery wall of a subsequent pregnancy."

It reminds us that we have no choice but to adjust our thinking and actively search for meaning and peace in our new, sorrow touched worlds. And yes, hunt for angel signs while we're at it.

Yes, maybe the ability to plan and to be fully in control is a thing of the past, but sorrow can't take everything away from us. There is still so much we can do. So much we can choose to do.

So many of the blog authors I read are actively engaged in charity work. For them it's a way to make something good from something so unthinkably bad. After all, loss doesn't take away that natural instinct we all have to mother - to nurture, care and help. In fact, in many ways it strengthens that desire. Which is why people like Inca work so hard to make a difference in a world she knows is so aching with sorrow.

This week she writes about the fact that her non-profit foundation in memory of her daughter Emma Grace is starting to pick up steam. Word is getting out, and you can hear the excitement in her words as she speaks about the start of the 2nd annual donation drive (Go check it out. Poke. Poke. Poke).

And you know, sometimes you just need a good laugh. Sometimes not thinking about the plans you can't make or the ones you thought you had is the very best thing you can do. A lot of the time it's the very best thing you can do lest your head implode from the sheer force of the suppressed anger, anxiety and confusions swirling around within its confines.

So after you check out Inca's sewing blog, you absolutely must read all about Karla's cats and their herpes.

So yes, planning is out the window. But there's still so much we can do, including searching for angels, helping others and laughing at the herpes cats.

There is life after loss. Even if we can't plan a damn thing anymore.

New York Time Article Update

AOL has picked up the recent New York Times article regarding the Missing Angels Bill in New York. The AOL site allows readers to comment on the article or vote on the question "Should states issue birth certificates for babies who are stillborn?"

If you wish to add your voice to the discussion, go here.

edited to add: there are currently comments on those discussion threads that are extremely hurtful, so please be aware of this if you go there!

Scrapbooking Website

For those of you who choose to scrapbook your memories of your children, you may wish to check out www.justacloudaway.com.

BBC News: Aspirin 'cuts pre-eclampsia risk'

Taking aspirin throughout pregnancy could reduce the risk of the potentially dangerous condition pre-eclampsia, a major study suggests.

A University of Sydney team analysed data on more than 32,000 women for a study published in The Lancet.

The results suggested cases of pre-eclampsia, which is caused by a defect in the placenta, could fall by 10% if aspirin was taken widely.

Experts urged caution, given the small risks linked to long-term aspirin use. (continue)

Joy for parents after babies' deaths

Having three babies die in two years meant Claire Wright dreaded Mother's Day.

But this year will be different after the birth of healthy daughter Zoe in January.

"Before she was born I was really excited and eager to bring her home," says Claire. "It seems more natural to be a mum to a living baby, than to babies who have died." (continue)

MISS Foundation Update

The MISS Foundation is featured in a prominent New York Times article on Tuesday, May 22, 2007.

A Move for Birth Certificates for Stillborn Babies

Last summer, three weeks before her due date, Sari Edber delivered a stillborn son, Jacob. “He was 5 pounds and 19 inches, absolutely beautiful, with my olive complexion, my husband’s curly hair, long fingers and toes, chubby cheeks and a perfect button nose,” she said.

The sudden shift from what she called “a perfectly wonderful healthy pregnancy” to delivering a dead infant was unfathomably painful, said Ms. Edber, 27, who lives in Los Angeles with her husband, Daniel. (continue)

We are grateful to the reporter, Tamar Lewin, for writing this very special story.

Unfortunately, we are also deeply disturbed by comments made by Ms. Perry Lynn Moffit which are clearly incongruent with the desires of many families experiencing stillbirth across the nation. Our position is that bereaved families of stillborn babies demand what is rightfully due them, and cannot be assuaged merely by an "informal memory certificate" offered by a hospital. This false assertion serves to undermine all of our efforts. Therefore, we reject this notion on behalf of thousands of stillbirth families around the country.

Further, we reject Ms Moffitt's characterization of the MISSing Angels Bill as suggesting that stillborn babies "become cherubs in heaven." The bill was named, instead, in honor of the many MISS Foundation children who died before their time, and embodies the more secular definitions of 'angel' including goodness, purity, and virtuousness (American Heritage Dictionary, 2007).

Ms Moffitt's unfortunate and misinformed comments aside, the article was well written, and accurately portrayed some of the complex struggles facing women, men, and families affected by the tragedy of stillbirth. We thank the courageous families interviewed in the article, and applaud the efforts of the volunteer lobbyists of the MISS Foundation working diligently in many states to pass this important legislation.

~MISS Foundation Email

MISS Foundation Press Release

Feminists Groups Finally Hear the Cries of Women Experiencing Stillbirth

Guttmacher Institute the Center for Reproductive Rights, Planned Parenthood Federation of America, the ACLU...and NARAL Pro-Choice America told Stateline.org they take a neutral position on the stillborn birth-certificate issue.

"We are hopeful that the remaining 31 states will pass with relative ease now that the opposition has changed their positions," said Joanne Cacciatore, CEO of the MISS Foundation and a social scientist who studies the effects of stillbirth on women. "It is important for many, many women from an emotional, psychological, and epidemiological perspective...and this is about advocating for these mothers."

Cacciatore notes that this paradigm shift in attitudes toward stillborn babies comes, in large part, as a result of a cooperative social movement between the MISS Foundation and other grassroots groups that provide support and resources to families experiencing infant and child death. "We are not going away," Cacciatore continues. "We are prepared to take our stand. It is the least we can do for these children and their families."

Stillborn laws entangled in abortion debate
By Christine Vestal, Stateline.org Staff Writer

Every year, some 35,000 women deliver babies who die just before or during birth. A number of parents say their grief over the tragic loss is made worse because most states simply issue death certificates, never recognizing the birth of their stillborn offspring. (continue)

Updated Link

Please note that Vegetarian Mom has been forced to make her blog private. She was under attack by people who chose to use her story of loss to further their own political agendas. It is unthinkable that this would happen in a civilised society.

However, we hope that people with good intentions of honouring her and her darling baby girl will still be able to connect to her blog. If you would like to request access to her blog, feel free to email us here at the Directory. We will pass your request on to her.

New Blogs Submitted This Week

A warm welcome to the following Bloggers:

• Love, Hope and Faith
• Inca's Sewing Blog

Friday Blog Roundup - Beautiful Mothers

It's almost Mother's Day - a day those of us without living children dread, and those with living children endure with outward smiles and inward tears. For some it's the first one since losing a child, and to you I send wishes for peace and my hope that you will somehow find a way to celebrate the fact that you are a mother.

We are all mothers. We created life, no matter how small. We nourished it, no matter how long. We loved, we lost and we learned that, if given the chance, we would have died for those babies if it meant that they could live.

The love that grew along with our children is what makes us mothers. Be it 4 weeks or 10 months, we have been forever altered by the tiny lives that lived in us and by the tiny hearts that once beat in time with ours.

Emm at 13 Years into the Journey brings a perspective I don't think I've seen before in this little corner of blogland. She writes as a mother who has been mourning the loss of her daughter for 13 years. In her words I found incredible strength, and I took great solace in the fact that she shows it's possible to survive the loss of a piece of your heart.

I often wonder if I'm doing okay - if I'm putting the same amount of effort into my healing as I am my grieving, but Emm explains that the feelings of loss don't go away, even after 13 years. There will always be a measure of pain.

"There's just this feeling everyday that something is missing. It doesn't hit when I first wake up - or before I go to bed. It's in the little things of everyday."

What I'm missing now I'll always be missing. There is a strange comfort in knowing that. I'm glad Emm found us and I hope she continues to write about her daughter and her journey.

I will never understand those who must endure sorrow heaped upon sorrow. Please send Rosepetal some love and prayers. She is losing her second desperately wanted little boy next week. The love woven into the words she writes to her sons is breathtaking. It's so intimate and personal I almost feel like I'm intruding on sacred ground when I read her posts. I'm awed by her strength, and once again astounded, comforted and touched by the depth of mother-love.

Carole's post about a trip to the cemetery to visit her son Joseph with her daughter Abigail in tow nearly made me cry.

"We are heading back the van. She is holding my hand. She looks up at me and says..."Joseph lives with the doctors, right?". I try to explain the whole heaven thing again. I wonder if she thinks we left him at the hospital. There is no telling what is running through that 3 year old mind."

This is life for so many mothers (and fathers) - trying to make their lost children a part of their living childrens' lives, and doing all they can to ensure that those tiny souls are never forgotten.

Abigail's innocent confusion was what brought me to the brink. She will grow up understanding loss in a way many children never do, and as a result she'll have compassion and maturity beyond her years when it comes to grief and healing. But that she has to know such sorrow to gain such wisdom is utterly heartbreaking.

Steering her living children through the minefield of sorrow must be mentally and physically exhausting. And yet Carole does it with the grace, love and selflessness that only a mother can.

Finally, there's Artblog, who was tagged this week. Her task was to write an "I Am" poem that would give her blog readers a sense of, well, who she is. Her poem ended with this:

I am happy, I am sad, I am playful, I am glad,
I am grateful, I am mad, I am tired.

I am.

And isn't that life as a mother in mourning in a nutshell? We are so many things at all once - even things that seem to be in opposition to each other. We are all those things all at once because we have to be. And because, by some miracle, we're strong enough to be.

Happy Mother's Day

BBC News: Home spit test for pre-eclampsia

A UK hospital is testing a home spit kit designed to help mums-to-be spot if they are at risk of pre-eclampsia.

One thousand women in Chichester will try the test that reads saliva for tell-tale markers of impending kidney problems linked with the condition.

It is expected to be more reliable than traditional blood pressure and urine checks, the Chemistry & Industry magazine reports.

Pre-eclampsia can be symptomless and kills up to 1,000 UK babies every year. (continue)

New Blogs Submitted This Week

A warm welcome to the following Bloggers:

• Looking for 2 Lines, and Other Ramblings
• Andria and co.
• Special Survivors
• A Series of Unfortunate Events
• 13 Years into the Journey
• A cop, A nurse, 3 dogs and maybe baby?

Friday Blog Roundup - No theme, just some beautiful words

Some people simply have a title for their blogs - a phrase that somehow just works to describe their piece of real estate here in blogland. Others add a subtitle that helps to further explain what it is they're dealing with and why they're compelled to write about it. I'm often blow away by the power of those few words, and found myself feeling that way when I read the An Invisible Minority subtitle.

We are a group of people that represent approximately two percent of the population*. We may look like everyone, we may act like everyone, but we have a constant thought in the back of our minds. We are thinking of our babies that didn't have a chance to live their lives.

It's so simple. So straightforward. So heartbreakingly honest and so very, very real. We do look just like everyone else, don't we? And yet there's more going on inside than the other 98% can even begin to fathom.

Melissa at Infertility, I wish I could quit you talks about her experience with church as a child this week, and finds herself thinking about prayer. So many of us wage epic battles with our respective Gods after we suffer the loss of a child. Melissa's trust in God and her ability to believe that he hears her through the clutter of her life no matter where she is, is beautiful.

I wonder about God a lot. About his plan and, specifically, about what happens to my prayers when they leave my lips. Melissa's entry made me remember a time when I didn't dwell so much on this - when I trusted more. When my faith was stronger.

"I've learned I don't need to have my thoughts organized and coherent. They don't need to be elaborate or profound. I don't need to set aside a certain time or place. God listens and hears a sincere, "Amen," wherever I am. I know someday he will grant me the desires of my heart - even if I voice them from a snore."

Her words brought me a moment of peace.

And then there's AJW5403 over at My Pain I Hide who has been tormented by feelings of loneliness lately. Her words tore at my heart. She doesn't understand why she can't find a place where she fits in - why she can't connect with someone.

But sometimes I just get so lonely. And I also have this huge fear of hurting somebody’s feeling and not knowing that I have hurt them. So that makes me a little paranoid to say too much to somebody.

Sorrow is lonely. It's many things (anger, despair, fear, pain) but it is certainly very, very lonely. I hope she finds a place where she is comfortable sharing her pain. And I hope when she does, she is welcomed with open arms by people who truly understand and will help make just a little of the loneliness go away.

And finally, there's Thalia who thought she was having a boy and found out it was a girl.

I had always known how much I wanted a daughter, so when I thought I was having a boy, I was aware of the loss involved in not having a daughter. After you'd all written me such beautiful and thoughtful comments, I started to understand better the wonderfulness that a son would mean. So now that I know that I am probably carrying our daughter, I have a sense of the loss that not carrying a son means. The answer is that only were we having boy/girl twins would we not be anticipating a tiny sense of regret. Not a major regret, not a big sadness, but a knowledge that in having something wonderful happen to us, we also have to let go of another tiny dream, a different life that might have been. I am delighted, but I am greedy.

It's so easy to love a baby - even a baby whose parts are still too tiny (or frustratingly hidden), making gender identification virtually impossible. Or incorrect. We love them - and we dream a thousand dreams for them. We love the idea of that mysterious little stranger so much, that we mourn the loss of their identity when there's a surprise midway down the line, like Thalia's little boy who turned into Thalia's little girl.

And then we turn around and start loving them all over again.

The idea that there exists love of this magnitude never fails to take my breath away.

MISS Foundation Press Release

Presidential Hopeful Gov Bill Richardson Ignoring Pleas From Heartbroken Stillbirth Families: Dramatic Video Tells Stories

Phoenix, Arizona (PRWEB) May 2, 2007 -- When Governor and presidential hopeful Bill Richardson vetoed the MISSing Angels Bill (SB17) after it passed the New Mexico legislature with unanimous bipartisan support, the MISS Foundation vowed to launch an awareness campaign targeted at educating the governor so he wholly understands the issue of stillbirth.

The MISSing Angels Bill helps provide much-needed comfort, dignity, and documentation to women and their families experiencing the death of a baby just prior to or during birth. All states, including NewMexico, require the family to pay for funeral expenses, and a death certificate/report is issued after a stillbirth. Yet, some states refuse to offer women the choice of a birth certificate. It offers an option to women who give birth to loved and wanted babies who die unexpectedly to choose a birth certificate.

"I would assume that the last thing a presidential candidate would want to do is knowingly wound thousands of grieving mothers after their baby's death," said Daryl Logullo, Legislative Liaison for the MISS Foundation.

In response to the veto, the MISS Foundation has released a public service announcement that portrays the experiences of bereaved parents after stillbirth and is directed at Richardson's campaign. A very sensitive and controversial video, it speaks of the enormity of this public health issue. "Bill Richardson made a grave error injudgment, clearly being misinformed about this issue by his advisers," said Joanne Cacciatore, CEO of the MISS Foundation. Both the MISS Foundation and the National Stillbirth Society are calling for Governor Bill Richardson to offer a public apology to these bereaved mothers and families.

When Mother's Day Feels Empty

There are no words to completely describe what a mother feels when her child has died. She feels lost, abandoned, afraid, lonely, forgotten, and most of all empty. The emptiness is like none other because it is an emptiness of the heart. When a child dies, part of a mother's heart also dies.

Mother's Day is a traditional holiday that has grown bigger and bigger throughout the years. We are bombarded with advertisements to take out mothers for a special dinner or buy Mother's Day flowers. For more than a month before Mother's Day, reminders are placed everywhere. It's impossible to pick up a newspaper, listen to the radio, or turn on the television without some kind of reminder of Mother's Day.

There are Mother's Day banquets, Mother's Day baby dedications at church, and special family gatherings to honor mothers. All of this is wonderful except for the mother that is grieving the loss of her child. For the grieving mother, every reminder of Mother's Day is like another
wound to the heart. The hole in her heart caused by grief grows larger and larger with each reminder, and the emptiness feels darker and colder than she ever imagined possible. What is a grieving mother to do when there are so many reminders of the precious child she has lost?

Mother's Day is the only holiday that specifically uses the word mother, so there is no real way of avoiding this day. A grieving mother can, however, prepare for Mother's Day well in advance so that she knows how to avoid placing additional pain in her life.

Remember that Mother's Day is not a holiday that has to be celebrated. If a grieving mother does not want to attend a banquet, or watch baby dedications at church, or see special family gatherings at restaurants, then she has the right to choose not to participate in these events without feeling guilty. Many mothers choose to stay home and do nothing special at all on Mother's Day, and that is fine. Grief follows no rules and there is no right or wrong way to grieve.

Explain to others that this day is painful. Giving yourself permission to grieve in your own way is very healing and helpful, especially during such a difficult day as Mother's Day.

Do what feels right for you. Maybe that means taking a mini trip away where nobody knows you. Maybe it is staying at home. Perhaps a walk in the woods or a walk along the sandy beach would help you during this empty time. Journal your thoughts. Release a balloon. Or, maybe you want to avoid Mother's Day altogether. You know what feels best for your heart, and giving yourself permission to do what is right for you can be the most healing thing of all.

Lastly, remind yourself often that you will not always feel this empty. With each passing day new hope will enter your empty heart until one day you will wake up to realize that the empty hole is beginning to fill with some joy. Mother's Day is only one day. With a little bit of preparation you can make it through, and you will have walked one more step in your journey of healing!

by Clara Hinton, Silent Grief