Loss Article 3

Interview with Joanne Caccitore-Garard, Founder of MISS
Q & A with Kara L.C. Jones

Kara: For anyone who doesn't realize it, Joanne is the Founder of MISS, a non-profit organization helping bereaved parents and the people who care for them after the death of a child. Jo, would you tell about the beginnings of the MISS Foundation? How did you get started? Why?

Joanne: I started the MISS Foundation out of great need.

My fourth pregnancy was unplanned and in fact, we had been trying not to become pregnant. I found out I was pregnant on Thanksgiving Day, 1993. I felt guilty for my ambivalence. However, by Christmas I had worked through those feelings of surprise and was excited for the arrival of our next child. We wanted our other three children to be a part of the experience so they came to all our appointments, listened with our very own Doppler to the baby’s beating heart, and talked to my expanding waistline everyday. By June of 1994, I became very tired and uncomfortable. The Arizona summer heat was unbearable. My due date was July 27 and I could not imagine that I still had weeks to go before the baby’s birth. The sonogram had determined the baby was a little boy, albeit secretly I hoped and prayed for another little girl. We had chosen the name “Cheyenne” for a girl, and had not yet chosen the boy’s name. The children helped to decorate the nursery. Everything was new because we didn’t plan other children so we donated all our old baby items. The new things we bought for our baby would never be used.

On July 27, 1994, at 4:00 p.m., I had a transition contraction. This was my due date. I had never carried any of my children past 38 gestational weeks. This would be my first baby to arrive on the due date. Within twenty minutes, my cervix was dilated to seven centimeters and 100% effaced. The baby was coming quickly. Then, I heard the words that would forever change my life: “Joanne, we cannot find the baby’s heartbeat.” Those words were like a foreign language to me. I did not understand. What does that mean? How can that be? Surely, there must be some mistake.

An ultrasound machine confirmed the devastating news within minutes. At this point, I was nine centimeters, contracting every minute, trying to concentrate and focus on enduring the pain of natural childbirth. Someone in the room said, “Joanne, your baby is dead. Do you want to see the baby when he is born?” “What?” I thought to myself, “What are they saying. Why are they lying to me?” I tried to get up from the bed and leave. I wanted to go home. I felt these people were liars and 'bad doctors' and I could not bear to hear what they were saying. My baby could not be dead.

Fifteen minutes later, the baby was born. My eyes were clenched tight; fear ravaged every cell in my body. I was shaking from adrenaline. Confused, I waited for the cries I knew to follow birth. There was only silence. The silence was deafening.

The baby was wrapped in a blanket. “You have a little girl, Joanne,” someone said. I sat up and opened my eyes. I reached my arms out in disbelief to embrace the lifeless little body of my daughter. I cannot describe the feelings of helplessness and despair I felt. My long forty long weeks of tireless work had come to an end without reward. As I took her in my arms, I was overcome with love. She was the most beautiful of all my children at eight pounds and twenty-one inches. Her name, Cheyenne, means “mourning dove.”

I will never forget that day, nor the events surrounding it. For seventy-two hours, I did not sleep. These words I scribbled expressed my deepest anguish:

Thirty-Three Hours

It is 3:04 a.m.
Only 33 hours since your birth...
And your death.
But it seems an eternity.

Still I hope to awaken from this nightmare
To find myself pregnant
And complaining about your knee in my rib, again.

I have always known
That losing a child
Is the most difficult experience for a parent to endure.
Yet I never expected the pain would be as deep as it is.

So I live and relive the hours before your birth and death Wondering, Was it something I ate? Or lifted or said? Desperately clinging to theories on Why you couldn’t hold onto life.

I only know that from the moment of your miraculous existence Inside of me, I loved you intensely.

Just as the other three whom I so deeply love
I also loved and needed you.

So each day we dreamed and planned for your future.
Your kindergarten class
Graduation
College
Your wedding day.
Even your own children. But we never planned for your death. Now, I ache for you Beautiful Cheyenne. My arms long desperately to hold you and to love you.

I long to kiss your soft skin and stroke your cheek as I nurse you at my breast. I long to rock you to sleep and sing you the 'raindrops on roses' song (It is your big sister's favorite)

I long to watch you sleeping peacefully on Daddy's bare chest.

I long to see you growing everyday,
Playing with your sister and brothers,
Filling our days with your laughter and our nights with your love.

I long to take you on walks to the park.
I long to see the glimmering sun in your beautiful eyes.

I long to awaken you every morning
With a smile and a kiss (or two)

But your death has left me with an empty womb and a broken heart. Wondering if the sun will ever shine again Or if the sparrow's song will ever sound as sweet.

Wondering if each and every smile will always be this painful And each tear as heart wrenching.

And though others may,
I will not forget you, little girl.
Nor do I wish to try.

I will love you and keep you
Close to my heart
Until my last
Dying breath...

Forever Yours,

Mommy

The day I buried my little girl, in her tiny pink satin casket, my breasts overflowed with milk to feed her. My arms burned, my heart ached. I could barely stand to talk. I knew that I had died that day with her, and that I would never again be the person I was before her death.

Within a month after her death, my weight had dropped dangerously low. I was unable to eat, sleep, or function. I felt so incomplete. The guilt was debilitating. How could I have given death instead of life? There were no answers and isolation overcame me.

In September of 1994, sitting on my closet floor at 2:00 a.m. sobbing in fetal position, I told myself that one day, women and their families wouldn't have to endure the death of a child alone. That even though I can't bring Cheyenne back from death, her legacy would live on somehow- that I would help others because of her. At the end of 1996, I started the MISS Foundation. Clearly, there was a need. In less than five years, the MISS Foundation has nearly 40 chapters around the world! We have helped thousands of families around the world experiencing child death and in June of 2003, our website pages received more than 1,600,000 hits!

Kara: One of the things you did after Cheyenne died was to write and publish the book "Dear Cheyenne". I know that in my outreach to bereaved parents, I often refer to your book. Can you tell us about Chey's book? ..how you've found it useful in your own work with other bereaved parents? ...what the book means to you as a legacy of Chey's life and death?

Joanne: The book, Dear Cheyenne, was my catharsis~ it has connected me to so many other families who have experienced the death of their child at many various ages and from many various causes. Dear Cheyenne has encouraged and helped so many who said that they couldn't put "their pain" to words. It is a very, very private piece that focused on honoring our grief and motherhood...the value in knowing that continuing parental bonds and love continue, and grow, and evolve after death is overwhelmingly powerful. That is what the book Dear Cheyenne is all about.

Kara: The MISS Foundation seems to be growing quickly as more and more bereaved parents are coming forward to volunteer, to speak their truth, to seek solid support for living life-after-the-death-of-a-child. How much has the Foundation grown since you started? How many national & international chapters are there now?

Joanne: We've grown exponentially. We have more than 5,000 members in less than six years of existence and nearly 40 chapters around the world. We've been featured on Oprah, the Leeza Show, CNN, MSNBC, and various other media venues around the world!

Kara: It seems that lots of bereaved parents have found solace in the Kindness Project (I know I have!). How did this Project start? What does it do? Why? How does it work?

Joanne: The Kindness Project began in October of 1997 as a way for families to honor their deceased child and to help themselves heal.

After Cheyenne died in July of 1994, I never thought I would appreciate life again. I never imagined myself laughing or ever experiencing joy again. My pain was exacerbated by the seemingly casual attitude of some of my closest friends. In supporting hundreds of bereaved parents, I know this is not unusual.

Refusing to allow anyone to forget her, I began to seek out ways to keep Cheyenne alive to my family and to the rest of the world. I wanted people to know her and more importantly, I wanted them to know how much she is loved and what an integral part of our family she was. So I set out on a mission of "random kindness." On a daily basis, I looked for opportunities to reach out and do something unexpected and unusually kind for someone else. Most often, strangers were the recipients of these good deeds. I began to feel a sense of peace in knowing that Cheyenne was the reason behind the reaching out. The Kindness Project blossomed out of the extraordinary experiences I had while doing things for others. I discovered that my kindnesses were deeply appreciated by others, even when they did not know from whom the kindness came.

Truly miraculous things happen to our spirit when we reach out to help others. The Kindness Project is about healing and transformation and it reminds people that our children are so very important to us that we are willing to extend the life and love of our child and share it with others!

Now, years later, more than 500,000 Kindness Project cards have been used around the globe to perform random acts of kindness in memory of a child, parent, friend, or spouse who died before their time.

The idea is to perform random acts of, usually anonymous, kindness-es in the community. A little card is left behind so that the person who benefits from the kindness knows that someone's life and death continues to matter. This beautiful movement has helped tens and thousands of families to heal and find positive outlets for an overwhelming grief.

Kara: As the MISS Foundation has grown, it seems that more and more professionals are paying attention to the call for better care and response to bereaved parents. What have your interactions with that professional world been like? What has the response been like? What have care-givers responded to the most as the Foundation had done more and more outreach?

Joanne: Many professionals I've worked with have been responsive and empathic. They truly do care about the patients and their families. Yet, there is much work to be done. Thanks to Elisabeth Kubler-Ross, we've begun to change the sterile culture of death and grief in the West. I'd like to see more compulsory training, however, and increased standardized protocol especially for child death.

Caregivers often benefit immensely from our Professional Education Outreach. Our seminar ratings are very high and approach this topic from a phenomenological perspective.

Kara: Part of the MISSion of the Foundation is to explore research to find way to reduce infant and toddler death. What research is currently happening? What do you hope to see happen with the results of that research?

Joanne: We're currently working on a research project called MOMS to explore stillbirth in the U.S., both psychosocial and clinical aspects. We're quite anxious about the potential results, however, we're not sure what we expect to find clinically. Psychosocially, we're anticipating a response to a study done by Dr. Patricia Hughes in 2002.

Kara: Also see that the Foundation is doing some work on public policy and legislation. What is happening in those areas for the Foundation?

Joanne: The MISSing Angels Bill is a piece of legislation that allows for the issuance of a "Certificate of Birth resulting in Stillbirth (CBRS)" by a state's vital records office for any stillborn infant.
Every state in the U.S. already issues a death certificate for all stillbirths. Additionally, each state has a final disposition mandate for stillbirths. Many parents want to have their child's birth certificate in addition to their death certificate. Unfortunately, without legislative change, most states are unable to accomodate the parents' wishes. Many parents across the United States have voiced their concerns about the public health policy which issues the death certificate yet completely ignores the woman's process of birth when there is an intrauterine death. Arizona was the first state in the United States to change the law and the first state to issue the CBRS in 2001. It was a lot of work. I lobbied the Arizona legislature for more than one year to educate law-makers about stillbirth and to rally support. With the help of many families who wrote and emailed their legislators, HB2416, the MISSing Angels Bill, passed its final vote in the Arizona Senate with unanimous support. Supporter, Senator Susan Gerard said in closing, "The passage of this bill will give much needed respect to those who have experienced the stillbirth of a child. It may even be the first step toward increased knowledge about the causes of stillbirth. In addition, it makes Arizona the first state in what will hopefully be a national trend toward recognizing the significance of this tragedy. I would like to thank Joanne Cacciatore for her leadership and efforts on this bill and her daughter Cheyenne Cacciatore for whom this act is named." Since Arizona's passage of the MISSing Angels Bill, we've changed the law in 9 other states and 8 other states have legislation pending.

Kara: The MISS Foundation also has a component for addressing bereavement issues with surviving and subsequently-born siblings. What exactly is the KISS project and what is happening within that program?

Joanne: Our grieving kids program (Kids in Sympathy & Support) focuses on helping surviving children cope with their sense of loss and the overwhelming emotions of losing a brother, sister, or other core family member. We also help parents understand how children express feelings of grief and loss so that they can be better prepared to comfort them.

Kara: You'll be teaching again next year at the 2004 MISS Conference, yes? What will you be teaching there?

Joanne: I'm teaching several classes at the 2004 conference. My agenda is as follows:

Understanding the Timelessness of Grief
A phenomenological journey through the real experiences of child death for surviving family members. Honest discussions about varying responses to death, effects of stress on the brain, cultural considerations in mourning and ritual, and learn the real needs of those grieving the tragic death of a child. Learn how grief changes form as time passes and how families can best integrate the deep loss of a child family member into a new normalcy.

In the Moment of Mourning:
Capturing Grief in Art
Many artists have captured immense loss and grief on canvas. This touching slide presentation will take us through history portrayed in art and help us to understand that mourning is a common human experience which transcends time, country, race, or religion. Poignant photographs juxtaposed with music will create an ethereal experience.

Clinical Research and Politics of Stillbirth: It's out of the closet!
Intra-uterine death or the death of an infant due to stillbirth, occurs in 1 out of every 100 births. For decades, the causes and emotional aspects have been ignored by public health officials, researchers, and politicians. However, things are quickly changing. Find out the latest clinical research from stillbirth research pioneer and expert, Dr. J. Frederik Froen. Also examine the social, political, emotional, and familial effects on women who endure this tragedy. Discussion on latest public policy changes and the potentiality for future change.

Losing Layla- Movie and Discussion
A poignant documentary by Australian film-maker Vanessa Gorman that examines perinatal death. Touching and honest, this documentary exemplifies a unique cultural response to the concept of compassionate care, perinatal hospice, and the power of public and private mourning and ritual.

To Help One Person is to Help the World
Facilitator Training
Want to begin a MISS Foundation Support Group in your area? Need to enhance your skills as a support group facilitator? Attend this half-day session to sharpen communication skills, gain compassionate and effective leadership skills, learn to assess families, effective support group formats, protocol for follow-up care and more! Required training for certification of MISS Facilitators.

Kara: Will you be offering any trainings between now and the 2004 Conference? If yes, what will you be doing? When? Where?

Joanne: Yes! We've got facilitator trainings and a "Train the Trainer" opportunity for facilitators! We're educating the world about bereavement and compassionate care!

Kara: Would you share something with us about your own personal journey as a bereaved parent? As you look over your life and work since Cheyenne's life and death, are you able to say anything about how and why you've kept going? Or something about what has most significantly influenced you to continue on this journey?

Joanne: There are many things about life and death which I do not know. I have no answers for these questions and I am uncertain that philosophy, religion, clinicians, psychotherapists, statisticians, or any other discipline could provide an adequate answer to the question, "Why do children die?"

The best way I can sum up the poignancy of my experience was written in an excerpt from Dear Cheyenne:

"I am not certain if I believe in destiny. Most days, I vacillate in wonder…

What I do know is that there is a shroud of silence surrounding death in our society. I have never really understood why. There are two common human experiences that transcend culture, region, religion, ethnicity, and socio-economic status. Two absolutes that every person on earth will face: birth and death. Birth is celebrated and embraced in our society. Many people plan well in advance for the birth of their child.

Death is another story. It seems our culture supports the ideal that if we ignore death, it will not affect us. If we find quaint euphemisms or platitudes to describe death or to comfort those who mourn, then no one will have to feel the grief.

I hate platitudes. You know, those ignorant things people will say to make you feel better after your loved one dies. “God has a plan for you,” or “You’re young, you can try again.” More recently, after learning of the work I have committed to since Cheyenne’s death, people say things like, “You see, everything happens for a reason…”

Perhaps. But I don’t have to like it.

I wonder, each day of this journey that I travel, if this was really supposed to happen to me. The many things that have changed because of Chey’s life and death have truly been astonishing. This little infant who no one else really knew has changed so many lives. The reality of the whole event and the resultant grief is still overwhelming nearly eight years later.

Yet, I realized that whether it was destiny or not, whether this experience was part of some master plan to impel me, in some small way, to educate our culture about death or not, it doesn’t really matter. I don’t like the reality that I faced in 1994 and that I face each day without Cheyenne in my life. Parents should never bury their own child…it seems a cruel joke of Mother Nature.

But I have a choice between the roads that I take: the road to apathy or the road to fortitude. I believe apathy leads to repressed emotions and unhealthy grieving. I believe fortitude brings miracles and social change.

Whether or not this was destiny is immaterial at this point. I have made my choice of roads and that choice has been the best for me. It has shown me that one person truly can change the world…even if that person has died.

For more about the MISS Foundation
www.MISSFoundation.org