'Tiny presence' changes mother's life forever
By Michelle Craig
Bulldog - Dec 11, 1998

Joanne Cacciatore keeps a memory book of her daughter Cheyenne's birth.
There are photographs of Cheyenne being rocked by her mother. Pictures of the proud father, Paul, showing his baby to the world. Snapshots of Cacciatore kissing her little baby girl.

There are also pictures of Cheyenne in her casket -- her parents saying "goodbye" to her before they even knew her.

"Little child of mine...on this day, you died and you have taken with you more than your own life...you have taken my life too," Cacciatore wrote July 27, 1994, in a letter to her daughter. "I died with you today, little child of mine. Your tiny presence has changed my life forever."

The pregnancy

It all started for Cacciatore on Thanksgiving Day 1993.

She wasn't planning to get pregnant. The 33-year-old already had three children from her first marriage. She had married her second husband, Paul, seven months earlier and they were happy with their family size. They were using birth control. The pregnancy shocked them.

"I was ambivalent about it at first," Cacciatore said. "We had been using protection. It wasn't planned."

But Cacciatore said that within a few weeks she no longer felt like she had been dealt a bad hand. She began to get excited about the life she carried inside her. She began to love the baby inside her.

Sometime during her pregnancy, she was told the baby would be a boy. Cacciatore was happy with the news, but deep down inside, it was a girl she longed for, a sister for her daughter to play with.

Cacciatore's pregnancy went well. She said she ate the right things -- she had been a vegetarian for years. She didn't smoke or drink. But nine months later she went into expeditious labor and arrived at the hospital, dilated eight centimeters and minutes away from delivery.

Shortly before Cacciatore delivered, her doctor lost the baby's heartbeat. An ultrasound machine was brought in to confirm what the doctor already knew. The remainder of her pregnancy was spent in a daze -- trying to give "birth" to a child that had died within her womb.

"I can remember the absolute oblivion," Cacciatore said. "I had to almost have an out-of-body experience to get through the physical pain of labor coupled with the emotional pain of reality."

When it was confirmed that her baby was stillborn, Cacciatore wanted nothing more than to be taken home. She didn't want to see her baby. Then a nurse told her that the baby was not a boy, as Cacciatore and her husband had thought, but the girl they had always wanted.

It was their Cheyenne.

The grieving process

The next hour and a half spent at Phoenix Baptist Hospital was like a dream.

"No one ever talked to me," Cacciatore said. "And when I left the hospital, I left without any support information. Without a phone number. I left the hospital almost three hours after she was born and walked past the nursery with a rose and a little plastic teddy bear. "After going 40 weeks waiting for this baby...and they let me leave like that."

The hospital took the "first picture," as it does after all births, but Cacciatore wanted more. She sent her mother out to buy a disposable camera and she and her husband spent the next three hours taking their own pictures of their precious Cheyenne.

They held her and loved her, collecting memories of the child they would never take home.

The time spent and pictures taken of Cheyenne are something that Cacciatore doesn't regret. The practice is controversial, but many of the hospitals in the Valley promote it --Desert Samaritan Hospital in Mesa is one of them.

"We train staff, nurses, clergy and social workers to be support persons for our families, so that in-house, they get exceptional care when dealing with a loss," said Suzanne Helzer, a staff nurse for labor and delivery at Desert Samaritan and co-coordinator for the hospital's Resolve Through Sharing program.

RTS is a hospital-based program with community outreach for bereaved parents. It is headquartered in LaCrosse, Wis.

Helzer added that RTS care continues for a year after delivery, a time known to be especially hard for parents. Support groups are available for pregnancy infant loss twice a month.

Follow-up contact consists of parents being contacted at 24 hours, two to three weeks, four to six months and one year after the loss, Helzer said. Parents are also contacted on the baby's due date if it was different from the day of delivery. The program is free and if the support person feels a parent needs more time to work through his or her grief, a counselor outside the program is offered.

A program called Moving Forward is a subsequent pregnancy support group offered for parents who have lost a child and are planning to be or are currently pregnant.

Helzer trained for the RTS program at Good Samaritan, the first hospital locally to participate in it. She has been coordinating the RTS at Desert Samaritan for 10 years, and the hospital is used as a training spot for other programs in the Valley.

Besides counseling families, the RTS program offers services at the hospital when the baby is born. It takes pictures of the child, makes clay imprinting of its feet and hands and has a local company bronze the imprints.

Many churches provide clothes, pillows and blankets to the families. An out-of-state company also provides decorated memory boxes for parents so the baby's things can go in them.

Cacciatore said many people don't understand why parents are encouraged to capture the memories of a deceased child.

"It's critical," she said. "Not seeing, not touching, not holding your baby ... you can never get that time back."

Helzer agreed.

"It is a vital part of healing to acknowledge these parents, to acknowledge the child as a part of this family, to allow them to grieve in a healthy manner," she said. "You can't let go or say 'goodbye' to something that you haven't held and said 'hello' to. And making memories is the only thing that those parents have.

"That is our focus, to make sure they have something that will validate that baby -- not only to them, but to other people."

Helzer said mothers are frustrated with people who won't say anything at all to them, "who see them coming down the hall and go the other way ... and won't even mention it to them." She said some people even say stupid things such as, "You're young, you can have more."

She added, "When someone ignores the fact that they've had the baby or pretend it didn't happen, that eats to the very soul of that woman that gave birth. Don't tell me that baby didn't exist because then you're telling me my pain is for nothing or that I shouldn't even have pain."

The pain hit Cacciatore hard.

"The first month (after the birth) was unbelievable," she said. "I am a very strong, independent woman and I thought I could do this alone."

Cacciatore, her husband and her children had to deal with the fact that their daughter and sister wasn't with them.

Cacciatore's parents had to tell the children what happened. Being so drained from the delivery and death of Cheyenne, she couldn't even talk to them until a few days later.

"I know in retrospect, that was a mistake," Cacciatore said. "They should've actually been involved in the whole process. I thought I was protecting them from death, but actually children handle death much better than we do."

Acknowledging a mistake

When she did sit down with them, she talked honestly and answered all their questions. She said she knows it was a mistake not talking about Cheyenne. It wasn't until a few years later that she found out her second son was seeing the school counselor because he was having feelings of anger toward her stemming from his inability to say goodbye to his sister.

Over the next several weeks, she lost weight, dropping to 90 pounds. She couldn't eat, sleep or even get out of bed in the morning.

At the end of August 1994, she found herself with a phone in a closet at 2 a.m., sobbing and in the fetal position.

"It [the type of cry] was from so deep that every cell in your body aches," Cacciatore said. "I knew that I was either going to die because it hurt so much or I was going to get help somewhere. But I didn't know where."

She got the strength to grab a phone book and find some type -- any type -- of support group that could help her get through the death of her child.

After calling six disconnected phone numbers, Cacciatore found Compassionate Friends, an organization that offers support to parents whose children have died at any age, from any cause of death. Her first meeting was a couple of weeks later when she found herself sitting in a circle and listening to a woman who was sharing her experience of losing her 24-year-old daughter to cancer.

"My first thought was 'how horrible, how absolutely horrible,'" Cacciatore said. "And then my second thought was, "I would have given my right arm for 24 years with Chey."

Cacciatore said the meeting helped her on some level. It offered her support -- enough to continue going each month. The following year, she became an infant group leader for Compassionate Friends. It became the first of many involvements with support groups for parents who lose their babies.

"What I think parents find beneficial about support groups is that you see life differently after your child dies," Cacciatore said. "Everything takes on a different flavor. And people sometimes are unwilling to really talk to you."

She said many people want to talk about shallow things and not what the parent really wants to talk about. This is why support groups are so important.

"This is a safe place where you can go, like a sanctuary for bereaved where they can share and talk honestly," Cacciatore said. "There are not too many places a parent can go and say, 'I feel like I want to die,' and other people will understand what they mean."

A little brother is born

As she continued working with Compassionate Friends, Cacciatore realized mothers who lose their babies undergo a unique type of mourning. She had also heard more horror stories on how parents were treated after the death of their child.

She began to do some research and educate herself. She began offering workshops to local hospitals and organizations.

The words in her letter to Cheyenne began to take form.

"When you have an infant that is completely, 100 percent dependent on you for their survival, the sense of guilt is deeply amplified," she said. "I think for me, that was the most difficult emotion to overcome. The fact that she had lived and died in me, and I couldn't save her."

She started Mothers In Sympathy and Support with another mother she had met at Compassionate Friends.

It was during this time that Cacciatore found out she was pregnant again.

"I was very upset," Cacciatore admitted. "I didn't want to be pregnant. We were using protection because I didn't want anymore after Cheyenne. I wanted her to be the last."

Then, like her first pregnancy, she became excited. Then she began to hemorrhage.

She miscarried as a result of an ectopic pregnancy (when a fertilized egg implants on any tissue other than the lining of the uterus). But she continued to feel pregnant, experiencing symptoms such as morning sickness and swollen breasts. She went to the doctor and found out she had actually ovulated twice during the previous month and was still pregnant with a child she said "was meant to be."

On Dec. 12, 1996, Cheyenne's little brother, Joshua Cheyne Cacciatore, was born.

Cacciatore and her work became known around hospitals in the Valley. It also became known at Arizona SIDS Alliance because she had counseled parents who had lost children to Sudden Infant Death Syndrome. She was asked to become the organization's executive director.

As Cacciatore's involvement with bereaved parents continued to grow, she had many friends fall by the wayside.

"Friends have become strangers and strangers have become friends," she said.

For Cacciatore, she has lost many close to her over her memories of Cheyenne, including a best friend. Including her husband.

Understanding what's ahead

Cacciatore knew that she was not alone. Many parents end up contemplating separation or divorce after the death of a child, she said.

"I think the stress of Chey's death took a toll, and to some extent my continuing work took a toll on us because it took a toll on me," Cacciatore said.

She and her husband separated during the summer. Their divorce was final last month.

Cacciatore wanted to illustrate the problems and issues grieving parents go through, including divorce. Through the SIDS Alliance, she created a bereaved parent survey that she distributed through the May/June 1998 issue of SIDS Scoop newsletter and offered on the SIDS Alliance website.

According to the survey of 569 parents, 58 percent had strained relationships after the death of a child. Only 7 percent actually went through a divorce.

Ninety percent of the parents said they felt that their partner or spouse grieved differently from them. Cacciatore said this is what can cause the heavy strain.

Helzer said the family mechanics determine the grieving process. "Each person comes to this experience with different baggage, with different experiences in their life," she added. "If their experience with death and dying hasn't been very healthy, we are going to be dealing with a family unit who may not be very open to what we suggest."

Helzer said that her program makes sure parents understand what will lay ahead for them.

"For the most part, our fathers are very much involved and very open to what we say," she said. "We talk to them in depth about how communicating as a couple -- as a man and a women -- and how they do it differently and how that can weigh so heavily on the relationship. Before they leave [the hospital], they are given information. So when it rears its ugly head, they're not surprised."

The survey also asked parents how they felt about the various programs and support groups offered during the bereavement period. More than 50 percent of parents said they believed the services to be beneficial to them.

In Cacciatore's expe-rience with grieving parents, the No. 1 regret parents have is not spending time with their stillborn child. Out of the 569 parents, 74 percent had held their baby after the death. Seventy-two percent of this group had no regrets in spending those final moments and hours with their child.

Cacciatore and Helzer said an important factor to consider in saying "goodbye" to the child is to include the siblings, grandparents and anyone who plays an important role in the parents' life.

"The more people that have memories of that baby, the more people can support that mother and father," Helzer said. "It's very easy to pretend it didn't happen when you never saw a baby."

Random kindness

Making sure people saw and knew Cheyenne was important to Cacciatore.

The former journalism major wrote and published a book entitled "Dear Cheyenne." It included poems and thoughts of the child she never got to know.

She continues to work on Chey's memory book, adding cards sent by friends on the anniversary of her daughter's death. There are photos of her other children -- Arman, 12; Cameron, 10; Stevie Jo, 7; and Joshua, 2; articles about her work with bereaved parents; and thoughts and poems she writes from time to time.

But not everyone understands Cacciatore's reasoning.

She said that she has had people tell her it's morbid for her to hang pictures of Cheyenne in her home alongside her other children and to keep her memory book.

"Who would say that?" Helzer asked. "That is such a Neanderthal attitude. I guess I haven't been exposed to that kind of closed-mindedness in so long I didn't think it was still out there."

Cacciatore said it is.

"I know people that are appalled," she said. "They tell me it is unhealthy for my other kids to see pictures of Chey. To them I say, 'If your mother died, would you remove her pictures from the wall? Would you pretend she never existed?'"

Her dedication to her daughter's memory has not slowed.

In the fall of 1997, Cacciatore was coming home from one of her workshops when she noticed a bumper sticker on the car in front of her. It read, "Practice random acts of kindness and senseless beauty." She understood what it meant.

Since Cheyenne's death, Cacciatore had gone out of her way to be kind. For years she had donated Christmas toys to the Lincoln Learning Center in Phoenix. She would leave inflated tips at restaurants. She even anonymously bought shoes for a family with five children.

After she saw the bumper sticker, Cacciatore thought that there were other parents like her who wanted to do something kind for others in their child's name, yet didn't want to be thanked or have attention drawn to them. So she organized the Kindness Project.

Through her latest endeavor, Cacciatore has created Kindness Cards. Each business-size card reads, "This Random Act of Kindness Done in Loving Memory of Our Beautiful Child." There is a space for parents to fill in the name of their child.

The cards have become so popular that Cacciatore designed a second set that reads, "in Loving Memory of..." for friends and relatives to distribute in memory of their loved ones.

To date, more than 40,000 cards have been sold. Requests come from all across the United States and as far away as Argentina. The cards range in price from $1 for 10 to $11 for 250.

The next step

Once a month and on holidays, Cacciatore climbs into her van and travels from Peoria to the beautifully serene park that sits at Shea Boulevard and 93rd Street in northeast Scottsdale.

On one recent day, her son Joshua joined her as she walked across the emerald green lawn, kindly tended to by workers. Around them were patches of beautiful flowers with holiday decorations among them. At the park's core, a small lake is home to a flock of ducks.

Angel sculptures stand as protectors atop small marble stones, serving as guardians to Chey and the others who now make Paradise Memorial Gardens home.

It is here that Cacciatore finds comfort and strength.

"It's a quiet place to go, where God can speak words of comfort without distractions, without judgments," she said.

"It is a safe haven for tears, a place to fall apart and to regain composure. We all need that place, that quiet place to go."