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Thursday, March 23, 2017

FINDING PURPOSE IN GRIEF: The MISS foundation offers a light at the end of life’s darkest tunnel

Joanne Cacciatore holding a photo of her daughter, Cheyenne. Photo by Daniel Friedman.

A young mother nears the end of her pregnancy with the hope that this child will be as healthy as her other three children. For some reason, however, she feels a sense that something is wrong. This pregnancy has not been like the others.

Her doctor dismisses her concerns, assuring her that all is well. Then, as if to validate mother’s intuition, the baby comes early. Her other children were full term.

The birth is long and difficult, and the outcome is every mother’s worst nightmare: the baby dies in labor. The mother experiences an out-of-body experience, not uncommon during trauma. She feels powerless, hopeless. “I don’t want to live if she can’t live,” she tells herself.

The medical staff seems clueless about how to comfort her; absent is the intimacy that should exist through such an event. Later, she would struggle with the feeling that the hospital fell short—that not enough was done to save her baby. To compound the tragedy, the mother is released the next day without assistance or guidance on how or where to find support—if any even existed in the Valley back in 1994—to help her deal with such a loss. At home, her breast milk, essential to life but now useless, comes in as the final, cruelest blow.

That was just the beginning of dark times to come for Joanne Cacciatore, Ph.D., founder and CEO of the Phoenix-based MISS Foundation. With neither immediate nor extended family support or friends who knew what to do, she was barely able to care for her living children, all under the age of 6, let alone herself. Months later she would sit on her closet floor, near death’s door from self-neglect. Desperate, she looked through the phone book for help, only to dial disconnected numbers. She had hit bottom, but also sensed a turning point: If I survive this, perhaps something of worth could come from all this pain.

And something did. To channel her pain and suffering, Cacciatore was determined to take the loss of her daughter Cheyenne and “do something else with it to help other people and find a way to be of service to others.” She vowed that as long as she was able, no other woman would have to go through what she did, by way of a medical system unconscionably ill-equipped to deal with such situations with care and compassion, in a society unable to provide a safety net for any parent cursed with the death of a child of any age.

“We want to talk about anything but death, especially that of a child,” says Cacciatore, who knows it all too well. “Systems in our society—educational, healthcare, religious—need to do a better job of talking and teaching about loss.”

When Cacciatore established the MISS Foundation in 1996, the words of Elie Wiesel, the famed Holocaust survivor and author, echoed in her head and heart: “Whoever survives a test, whatever it may be, must tell the story. That is his duty.”

The first MISS program was The Kindness Project, which grew out of the “extraordinary experiences I had while doing things for others” on Cacciatore’s path to healing. Grieving families perform random, anonymous acts of kindness in memory of a loved one who died before their time. A card is left behind so that the person who benefits from the kindness knows that someone’s life—and death—continue to matter. Since 1997, more than a million cards have been left around the world, helping countless families to heal as they find purpose in their overwhelming grief.

“The cornerstone idea was that, when people are ready, their child can continue to live through the love of serving others,” says Cacciatore. And those touched by such a simple act can perpetuate the cause through reciprocation.

Cacciatore put herself out there, visiting hospitals and meeting with doctors, nurses and social workers in an effort to educate them about the importance of empowering patients and families experiencing the abyss of the traumatic death of a child. Her goal was to create an awareness and sense of responsibility within the medical community and encourage professionals to “sit with [parents] in their suffering versus just dispensing a pill.”

The MISS Foundation, which started in living rooms and church halls, continues to grow. Its website gets 1.5 million hits each month. As a 501(c)(3) nonprofit, all-volunteer organization, MISS is committed to providing crisis support and long-term aid to families after the death of a child at any age, from any cause. MISS is also active in legislative and advocacy issues, community engagement, volunteerism and ongoing education. “It is a cause that unites many people,” says Cacciatore, with tireless volunteers and parents “just wanting to do good, in their child’s memory.”

“This is what people need to know,” says Cacciatore in a serious, blunt tone. “When a child dies, everything changes. You never get over it; you integrate it into your life; you fold it into who you are. The effects are enduring, not transitory. There is a beginning, but no ending. No words can describe what it’s like to bury your child.”

Cacciatore is emphatic about the importance of clinicians and sociologists understanding the difference between grief and depression, stressing that “grief is a reactive sadness to an event, while depression is a more abstract sense of something being wrong, of not knowing exactly why one feels sad.” By recognizing this crucial difference, they can help “to mitigate the damage and help people in the throes of grief to see a flicker of light, and guide them to the opening in the rocks.”

Cacciatore describes grief as a narcissistic experience. Who could possibly know how I feel? Surely I must be the only person on Earth who is experiencing this unbearable pain. The effects of traumatic loss and the resulting grief are deep and wide. She lists them, barely taking a breath: cognitive effects (the brain can’t focus), sleep deprivation or the desire to sleep all day, behavioral changes, stress hormones flooding the body, immune response effects, tangible pain.

“Every cell hurts,” she says. “Living hurts. It becomes very difficult to manage day-to-day mundane tasks, like brushing your teeth or paying bills. They seem so trivial when you’ve buried a child.”

As the years passed and the roots of the MISS Foundation took hold, Cacciatore made further commitments to her personal and professional cause. She earned bachelor’s and master’s degrees in psychology from Arizona State University and a doctorate from the University of Nebraska-Lincoln. A visit to her office requires careful steps around stacks of books and papers on the floor, testament to ongoing research projects. She has been published in various medical journals. She spearheaded and directs the graduate Certificate in Trauma and Bereavement program at ASU. Her practice as a trauma and bereavement therapist at The Center for Loss and Trauma takes up the rest of her frenetic schedule.

The October 2010 MISS Foundation-sponsored "Barefoot Walkabout to Remember," an event Cacciatore started as a grief-coping strategy. About 60 bereaved parents, siblings and grandparents hiked barefoot up Brewer Trail in Sedona, led by Jodi Levesque in memory of her daughter Nia. Photo courtesy of the MISS Foundation.

She takes refuge in her Sedona residence with her husband. Her other children are mostly grown, and she will always tell you she is the mother of five children, “four who walk and one who soars.”

To this day, Cacciatore’s children recognize Cheyenne as their sibling. “By integrating her into our family, we are more authentic,” she says. “[Cheyenne] is part of our family story.”

When asked how she envisions Cheyenne today, she pauses before answering.

“Your grief ages with your child. For me, it’s tricky because I don’t intentionally try to create a vision of her now. Grief takes a turn at some point; things that seemed to comfort before don’t seem necessary to me anymore”—a positive sign that, over time, “little morsels of healing and wisdom” have enabled her grief to evolve and change. “My grief remains today, but it is different.”

At some point, most people make the decision that “they’re going to survive this, and mourn in a meaningful way,” she says. The approach in providing support is about “empowering people to make choices during their suffering…and find their purpose. Suffering brings us closer to our true selves. Everything we build ourselves up to be becomes stripped during immense suffering. We are reduced to basic survival.”

The challenge in those moments is to find out if we are “courageous enough to sit with our suffering, confront it and fold it into who we are and who we become. Some never hit that point. But it’s a conscious decision to get there.”

What doesn’t help is social pressure to put on the mask and go back to the business of living before one is ready, which Cacciatore stresses can “exacerbate the frailty of grief.”

The value of the smallest, simplest gestures—food left at the door, taking siblings on an outing to give parents time to grieve, extra attention at holidays—is immeasurable.

“Remember them one, five, 10, 30 years after their child dies,” advises Cacciatore. “Be present. Listen. There is no time limit on grief. Be willing to sit with them. You can never go wrong approaching with gentleness and compassion.”

Cacciatore knows firsthand that “when people are cared for, it is easier for them to care for others.” The MISS Foundation endures because when people are helped, they become helpers. They turn all that pain into a sense of duty and compassion—and bring new meaning to the tragic loss of a child.

Learn more

missfoundation.org

 

Feedback from our readers

Your article, “Finding Purpose in Grief” highlighting the MISS Foundation (January 2011) couldn’t have come at a more poignant time. On Dec. 11, my dear friend delivered a seven-pound angel daughter who was born just over a week shy of her due date. For reasons unknown, her heartbeat suddenly stopped in utero.

The grief my friend and her family are experiencing right now is indescribable. When I got the news, I felt completely helpless and poured through online articles trying to find something, anything I could do to help the situation. I was at a complete loss, and I shed many tears and started having nightmares about the situation because I am currently five months pregnant.

Thank you for spotlighting the MISS Foundation here in Phoenix. I’ve passed along your article to my grieving friends and they are attending an upcoming support group meeting.

Stephanie Jarnagan
Think Communications, Chandler

 

Thank you, thank you, thank you for finding Joanne Cacciatore, Ph.D. and showcasing the MISS Foundation. I was a student of Joanne’s in one of her first grief and trauma classes in 2005. The class changed my life. I have not lost a child, but I view the loss of a child differently then I ever could imagine because of Joanne.

I now have clients I work with that are grieving the loss of a child, and I am fortunate that I have had a window into their pain to understand that the pain will shift but never go away. I hope the articles help grieving parents see there is help, and help others understand how to help.

As an adoptive mom I have lost many nameless/faceless children over the past seven years in our waiting for phone calls from Child Protective Services. Nothing compared to a death of a child, but each was a loss nonetheless. Joanne and the strength she provided to me as her student helped me and my husband persevere. I am thankful to say that this past fall we were placed with two additional children and their adoptions will be finalized early in 2011, adding to our one other adopted daughter, which now completes our family.

Keep the authentic articles coming.

Noelle Landay, LMSW
Phoenix

 

Thank you for a great article on a tender subject. I run an organization to provide support, advocacy, awareness, prevention and education for the parents of a murdered child and other family members who have lost a loved one to murder. It is a harsh reality that is compounded further by the violent way the child died and the intrusion, frustration and often unfairness of the judicial process (if there is even an arrest).

Like Joanne Cacciatore, at one point in my grief over losing my son to murder (he was robbed and shot to death in 1991, at age 18) I decided to live with my lifelong pain in service to others enduring the same thing. Our chapter has grown since I began leading it in 1993 to more than 1,400 families locally. I went from being a stay-at-home mom, providing day care in my home to taking on all the many challenges facing a growing organization: meetings, fundraising, grant writing, teaching, learning from the professionals we deal with and so much more. I also began writing as a way to heal, educate and sing my son’s silenced song.

While my work with POMC is never easy, it is very rewarding. It has kept me sane, given me a purpose and became my greatest passion. Like Joanne, I truly thought I would die from my pain and, if I’m honest, sometimes wished I would. But if had, I would never have become who I am today. If God came to me today and said I could have my old life back, I would respond that while I would most definitely take my son back, I would not want my old life. I would want to keep all the lessons I have learned through the ultimate grief journey a parent can experience and the amazing people I have met along this journey, including Joanne.

We never get over it, but we can “get on with it” if we work hard.

Beckie A. Miller, Chapter-Leader
Parents Of Murdered Children (POMC)
Valley of the Sun Chapter
PO Box 39603
Phoenix, AZ 85069-9603
602-254-8818

pomc.com/phoenix

 

I am a parent in Austin, Tex. whose infant daughter was stillborn almost four years ago. I wanted to thank you for your very meaningful and well-written story on the MISS Foundation and Joanne Cacciatore, Ph.D.

A special thanks to your publication for making it the cover story and for giving this under-reported topic the prominence it deserves. Without the continuous support of Dr. Cacciatore and the MISS Foundation, I am not sure I would have made it through this extremely isolating and traumatic time in my life.

This article will undoubtedly help so many parents who are going through similar experiences. Thank you very much for your thoughtful research and coverage on this issue.

Kelli Montgomery
Austin, Tex.

 

I just wanted to take the time to thank you from the bottom of my heart for running the article about the MISS Foundation and Joanne Cacciatore, Ph.D. Loss on this level is experienced by too many families and many of these families never really get the proper help they need to regain life. So often parents without proper peer support try to stuff the feelings, believing they don’t have a right to grieve as they feel they need. Hopefully, by running this article, someone in need of support will find us.

Trevor Van Huizen
Father of Diego Van Huizen (May 12 2008-May 13 2008)

diegosplace.virtual-memorials.com

 

I just wanted to take a moment to let you all know how excited I was to learn that the MISS Foundation was featured in Raising Arizona Kids. The foundation, and Joanne Cacciatore, Ph.D. in particular, have been a catalyst in helping my family heal following the unexpected death of my son Jason in 2008.

Jason was 11 when he died of an “intercerebral hemorrhage of unknown etiology.” My husband and I have four other children at home and MISS has been a huge support to all of us.

Jason’s death completely changed the way I viewed life and motivated me to do something to honor his memory. I wanted to help others experiencing the trauma of child loss so I decided to leave the world of finance (13 years in the banking industry and a graduate degree in management) and enroll as a full-time student. I am currently a graduate student at ASU in the MSW (masters in social work) and CTB (certificate in trauma and bereavement) programs and I also attend Phoenix Institute of Herbal Medicine and Acupuncture to work on my master’s degree in acupuncture.

I plan to serve the community as a bereavement specialist incorporating talk therapy and alternative medicine, specifically acupuncture as a healing modality. The support of the MISS Foundation and Dr. Cacciatore has been instrumental in my educational decision. I truly believe if it weren’t for the path that Dr. Cacciatore paved, I would not be headed the direction I am today.

I am really happy to see that Raising Arizona Kids is breaking the silence about child loss. Too often, no one speaks about it for fear of saying the “wrong” thing or merely out of the uncomfortable thoughts that the death of a child provokes. I really look forward to upcoming issues and applaud you in your efforts of educating readers on the support and comfort that the MISS Foundation provides during the journey that one experiences following the death of their beloved child.

My son’s website is jasonsanchez.virtual-memorials.com if you would like to get a glimpse of the 11 wonderful years we were blessed to spend with Jason.

Keep up the great work!

Donita McGlasson
Waddell

 

Thank you so much for publishing this series. I am a bereaved parent, and was introduced to the MISS Foundation by the RTS coordinator at Banner Thunderbird Medical Center after delivering my stillborn daughter on May 28, 2005; we named our daughter Charis.

It took me a couple of months to get up the courage to attend a support meeting, but what a blessing it was once I finally got there. Although many of my friends and family tried to be supportive of our feelings, they just fell short. Furthermore, after time, they quit calling and coming over. Through the MISS Foundation’s various monthly meetings and the website, I was able to receive much needed support.

The difference here is that nobody expects me to feel better, or to move on. I was allowed to feel my pain and talk about my feelings without making anybody feel uncomfortable. Additionally, I was on a quest to meet other people who also had lost children, and could empathize with me as well as encourage me. I just wanted somebody to say, “I’ve been through this, and you’re going to be okay.” I found that through MISS.

As I was reading this article, I kept thinking, “Yes, yes! That’s exactly how I felt!” I laughed to myself when I read the comment about walking around the piles of reference material in Joanne’s office. It took me back to an evening that my husband and I spent interviewing with Joanne.

Initially, my heart was to spend every moment of my life finding ways to memorialize Charis’s brief life in my womb. I was very fortunate to build a relationship with the RTS coordinator at Thunderbird, which resulted in me speaking to nurses at several training seminars. During my hospital stay, I was crushed and confused by the treatment I received from the medical staff. Most of them were afraid to look at me, while what I needed was for them to show me they cared. My therapy was to later have an opportunity to look at these nurses, and tell them what I had needed as a patient. My prayer is that my contribution during this training helped future bereaved parents. My husband also spoke during lectures on a couple of different occasions for Joanne.

I guess, for me, my healing came through helping others. It gave me the opportunity to use my own experiences to encourage others through their pain. When it came time that I no longer needed the group environment, I felt the need to give back. For a couple of years, I provided childcare during the monthly meetings so that other parents would be able to attend.

Without MISS, I can’t say where I would be today. Through my experience with MISS, I learned that there is no right or wrong way to grieve. I was free to grieve in my own way, without feeling any pressure from society to “get over it.”

We are doing fine now. Charis is remembered in our home, and our 4-year-old son speaks of someday meeting his sister in heaven. We also have a baby, and I’m sure he will soon be talking about his sister too.

Lori Wainwright
Phoenix
In memory of Charis

 

I am an MSW student at ASU. The first time I met Joanne Cacciatore, Ph.D. was in my human behavior class for my BSW. She was the professor.

The moment she started teaching, I was hooked. She is the most inspirational professor I have ever had. She inspired me both professionally and personally. She was not shy about sharing her personal life accomplishments and defeats in class, and incorporated her stories into our learning. She rarely relied on a book for teaching; all of her teaching was heartfelt.

She is also the most difficult professor I have ever had. She really pushes you to work hard, and it is very hard to get an A in her class. However, when I did get an A, I valued it because I knew I had worked hard for it and truly deserved it. She pushes every student to go beyond their limits and reach capabilities we never knew we had.

I learned so much in her classes that I took more of her classes even though I didn’t need them to graduate. I just took them so I could learn more from her.

There have been many times I have wanted to ask you to interview her for your magazine, but never did. I was ecstatic when I opened my mailbox and saw her on the front cover. Being a mom, a student, an intern and working is a lot to juggle, and sometimes I have thought about giving up. But then I look at her. She raised five kids (four who walk and one who soars), earned her Ph.D. and founded a non-profit. She inspires me to keep pushing forward.

I just want to thank you for sharing her story with more of the world. I don’t know if she even realizes the amount of people that she touches, even just students like me who sit in her class and learn from her.

Nichole Boren
Peoria

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Mary Ann Bashaw

Mary Ann Bashaw, of Phoenix, is the mother of two daughters, Claire and Hannah. This is her first article in the “Finding Purpose in Grief” series, which won second place in the Non Metro Writing – Social Issues Reporting category at the 2011 Arizona Press Club Awards. Our March issue explored perinatal hospice and our June issue looked at the ways fathers grieve. The last article in the series, “Expressions of Grief,” explored the power of ritual and creativity on the path to healing.

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