Journal offers grieving parents an outlet for memories, thoughts, expressions

Published: February 2 2014 | 7:02 am - Updated: 29 March 2014 | 3:02 am in

‘Love Lasts Forever: A Journal of Memories” isn’t like other baby books or children’s memory journals. It’s not for parents to fill out as their children grow and mature, with hopes of passing it on as that child has children of his or her own.

This journal is different.

“Love Lasts Forever” is for a group no parent ever wants to be part of — those parents who have lost a child.

“If she hadn’t been such a beacon of light, life, love, and hope, perhaps I wouldn’t be so aware of the darkness,” wrote Mindy Kankel, mother of Mari, in the book.

Mari Kankel was just 6 weeks old when doctors at University of Iowa Children’s Hospital discovered three major abnormalities in the little girl’s heart. The prognosis wasn’t good — though they weren’t sure how long, doctors knew Mari’s life would not be a long one. They prepared her parents for the worst.

“When we finally knew the depth and degree of Mari’s medical issues, we were very conscious all that time of bringing up our other kids in an atmosphere of being able to love her and to accept her,” Kankel says. “I wanted them to understand how serious the situation was, what a fine line their sister walked, and that we would navigate it as a family.”

Mari had seven open-heart surgeries before her second birthday, followed by numerous surgeries and procedures over the next several years. With every open-heart surgery, doctors told her parents she had a 50 percent chance of surviving. She went into cardiac arrest at least twice. Many doctors didn’t think Mari would live past her 7th birthday.

Mari died on Nov. 11, 2010, two months shy of her 16th birthday.

“Love Lasts Forever: A Journal of Memories” was written by two members of the pediatric palliative care team at University of Iowa Children’s Hospital, Sheila Frascht and Noelle K. Andrew. Frascht, a former pediatric intensive care nurse, is developer and coordinator of the Grief Services Program and a certified hospice and palliative pediatric nurse. Andrew, a former church pastor, has served as the UI Children’s Hospital pediatric chaplain for more than four years.

The two women have spent countless hours with families as they’ve grieved, as they’ve prepared to say goodbye to a child, and as they’ve struggled to find the words of comfort and support for each other and for themselves. Frascht was one of the first nurses to care for Mari in the Pediatric Intensive Care Unit. She and Andrew have helped find resources for mothers, fathers, siblings and grandparents to help them move forward.

It was in that search for resources that the women found a hole, a necessary resource that couldn’t be found.

“There were all these books that addressed all these different issues, but we couldn’t find a journal that allowed families to really celebrate their child’s life as well as reflect on their child’s death,” Frascht says. “You have a baby book for when your child lives, but what about the memories you want to hold onto when your child doesn’t live?”

“I remember saying at one point, ‘If we can’t find it, why don’t we just make it?’?” she recalls.

And so they did.

“Love Lasts Forever: A Journal of Memories” is a book the two women collaborated on as a journal for families who have lost children. For Frascht and Andrew, creating the book meant completing that comfort package — that group of materials to turn to for information — for a grieving family, providing that last outlet for them to record those special moments with or about their child.

“We both have cried with families, we have been disappointed and sad and angry,” Andrew says. “We’re trying to be a lifeline for them in a time of uncertainty.”

“This journal gives them a framework to place their thoughts, their memories, to write things they’re going to want to remember,” says Andrew. “It creates a legacy for their child.”

The book offers journal entry pages for such things as “A Beautiful Hello” and “How You Embraced Life,” but also for things parents may wonder in later years, such as “Questions I Want to Ask You” and “Special Days We Remember You.” There is an entry page for the day parents and child had to say goodbye.

Many pages have quotes from families whose children were patients at UI Children’s Hospital before they died.

It offers an outlet for parents and grandparents to say what they need to say, to write what they don’t think anyone else will understand. To record memories they don’t want to forget.

“I think it has the potential to engage those very broken hearts that never have any closure,” Andrew says.

“Love Lasts Forever” was published in August. Kankel said she was honored to be asked for comments to be used in the book. Though it wasn’t available for her at the time of her loss, she says having the opportunity to share stories of her child is a rare and welcome blessing.

Keeping a journal is a “safe” place to store memories, thoughts and emotions, Kankel says.

“Sometimes the most helpful things are those writings that are the most raw, when there’s no one looking over your shoulder, no one reading them or judging them,” she says. “You have this complete freedom to express thoughts and feelings that might be too difficult to talk about and you can choose to share them or keep them close. I think that’s absolutely necessary for parents to find any peace or for any kind of healing process to begin. To help you make sense of not only your child’s life but also of their death.”

“Love Lasts Forever” is included in materials given to every family who experiences the death of a child at UI Children’s Hospital. It also is available at Proceeds from its sale are directed to the pediatric palliative care program at UI Children’s Hospital.

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