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Photo provided by Steve Havertz
Emmalee Havertz was diagnosed with Stage 3 liver cancer in October 2008 and died almost a year later. For many parents the death of a child is the most painful loss experienced. There are no stages and there is no timetable for grief. It is a necessary part of the healing process.

The loss of a child is not like any other loss. For many, it is a void that cannot be filled. It is like the loss of a limb; it is the loss of the future.

Steve Havertz is a licensed clinical social worker, but his profession could not fully prepare him for the emotional and physical exhaustion he would experience when his daughter died.

Havertz and his wife, Kara, were devastated when they heard the heart-wrenching news that their 8-year-old daughter, Emmalee, had stage 3 liver cancer. Although her prognosis was not good, Havertz did not want to lose hope for a miracle.

“I didn’t want to have a lack of hope through the process,” Havertz said as tears welled up in his eyes. “It didn’t fit with who we were to be told that there was no chance for her to survive. I don’t think any doctor should go in and say, 'You don’t have a chance to live,' because they forget the human spirit.”

It was Emmalee’s fighting spirit that will long be remembered. Havertz recalled a particularly challenging night that still strengthens him. At 2:30 a.m., Emmalee awoke and told her dad she was in pain and asked if he would say a prayer with her.

“In her beautifully sincere prayer, she thanked Heavenly Father for her family and all those who were helping her,” Havertz recalled in his book “Dragonfly Wings for Emmalee,” which he began to write one week before Emmalee died. “She then started to cry. My heart started to break, but something very spiritual happened ... She asked Heavenly Father to help her get better and that, ‘No matter what happens, please help that we can all still have faith.’"

The 'spiritual damage' of loss

For some people, when a child dies, their very faith is shaken. Everything they believe is tested. Dennis Ashton, multi-area manager of compassionate resources for LDS Family Services, observed that it is not uncommon for people to be angry with God. The promise that one will be blessed through living a righteous life is questioned.

Ashton noted that it is important to remember that tragic things happen, but God does not cause them. Ashton and his wife Joyce have lost two children. When their son Cameron died, Ashton said that it was the only time in his life when he didn’t know if he could get up and go on.

“People are spiritually damaged when loss occurs,” Ashton said. “Quite often, that spiritual damage for some is overwhelming. It is very hard for them to talk about it.”

Specialized support helps parents grieve

The members of the palliative care team at Primary Children’s Medical Center are familiar with grief. The team offers care to those with chronic, life-threatening conditions beginning at the time of diagnosis. Many of the people they work with will visit the hospital many times.

David Pascoe is the hospital chaplain. It is his responsibility to provide a safe environment for people to explore what is going on spiritually in their life and to walk that path with them. When people ask those questions of, "Why me?" "What did I do wrong?" "Where is God?" "If only…," it is Pascoe and the palliative care team who provide a listening ear.

“I am often surprised at the strength of some people in the most horrendous circumstances,” Pascoe said. “I am often surprised at the quick abandoning of faith in other people.”

Whatever that person goes through, he noted, those who grieve often come out with a spiritual deepening, and they have been transformed in the process.

“It tempers your soul,” added Orley Bills, Rainbow Kids palliative care social worker at the hospital.

“Part of your healing from grief comes with being able to mourn and to share the story," said Jeff Fleming, Rainbow Kids chaplain at the hospital. "Most of us are so uncomfortable with death and with tears that we don’t know how to approach a person whose child has died because we don’t want to upset them or make them cry.”

Fleming said that one reason support groups are important is because they offer an outlet and a non-judgmental place for people to share their feelings.

“The reasons those groups work so well is they make it clear from the onset that you are welcome, and if you want to just share your name and listen, that is perfectly fine,” Ashton said. “That invitation with obligation is extremely powerful, but it is good to get that invitation because a lot of times they surprise themselves once they begin to talk. Sometimes it just comes flooding out.”

For some, sharing is an uncomfortable and private event. For these individuals, it is necessary to offer different disciplines, said Fleming, such as meditation. It is important to honor each others’ unique grieving process.

How to help when a parent loses a child

Bills noted that in one group meeting the participants discuss hurtful things people say. Though well-meaning, friends and even family members might say things can upset those who are grieving. Some of those include, “Isn’t it time you moved on?” “Your child is in a better place.” In the case of a miscarriage, they may say things like, “Aren’t you glad you didn’t even have the baby?” All these do not make the pain any less. Parents will still feel robbed of the dreams and hopes for that child.

To help honor individual experiences, Ashton advised, “Instead of saying, ‘I know how you feel,’ the answer ought to be, ‘I have no idea how you feel. Would you like to share?’" Another thing that will help is providing service.

Havertz recalled a time actions spoke louder than words. He appreciated the Boy Scouts cleaning his yard and the people in his Mormon ward who cleaned his house after his daughter passed away. The best thing he received was a hug.

“They never said anything,” Havertz recalled. “They just hugged me. There was a spirit-to-spirit communication.”

"I always tell people it is as simple as presences,” Bills said. “Sometimes just to sit with somebody and hold their hand, sometimes that is the best thing that you can do.”

Another key thing that is helpful to some is to acknowledge the life of that child and share memories.

“One of the things that a parent who has lost a child wants is for that child not be forgotten,” explained Fleming.

Different ways to grieve

Parents who grieve together can strengthen one another, but they too grieve differently and should understand each others' response to grief. Ashton said that in general, men are more cognitive and will think of ways things could have been different where as women are quicker to emotion and feelings.

Ashton noted that in The Church of Jesus Christ of Latter-day Saints' "The Family: A Proclamation to the World," it states, “Fathers… are responsible to provide the necessities of life and protection for their families.” The father will want to protect his child who is dying or who has died. Through putting in extra hours at work, he feels he can contribute to the hospital bills or a funeral. For the mother, she might want to communicate and express what she is feeling and thinking.

“The difference doesn’t make either of them more or less valuable or more or less committed to or feeling love and hurt for that child,” Aston counseled. “The key is to get it out in the open.”

Ashton suggested that the husband talk to the wife, listen to her and don’t do the natural thing, which is to fix the situation; just listen and be attentive to what is really being said. A wife can help her husband by recognizing that his extra hours at work are part of his provider mode, and thanking him for allowing the child to have additional treatments or a nicer funeral.

Everything is different for a couple after a child has died, Ashton noted — even intimacy.

“For some, intimacy during a loss is extremely comforting, more so than ever before,” he said. “The other spouse may find it hard to even image being intimate in the midst of a loss.”

Ashton counseled that both both husband and wife be very patient with one another.

Time, patience needed to fully grieve

Patience is required of anyone experiencing the loss of a child, because there is no timetable for grief. Many have compared it to a fingerprint; everyone grieves differently.

Grieving often comes in unexpected ways, but it is necessary.

“Grief is an essential part of human life,” Pascoe said. "You can’t be human and not grieve.”

“Each individual is different,” Fleming added. “If we set up this standard of steps and stages and ‘You should be through that stage now,’ and now a year down the road this re-emerges, then have they failed? ... You walk through those different places at different times.”

Some people find the idea of the grief stages appealing because it does provide a sort of road map to follow. Havertz noted that often social workers are expected to have answers about the future and how someone might feel. Still, he feels it is wrong to tell people or suggest they will feel certain things. Now when someone comes to him for counseling, he does not pull out his chalkboard and list the stages of grief. Instead, he asks them to share memories.

“Memories are the thing we hold onto, whether they are good or bad. We can’t erase a memory,” Havertz wrote in his book. “We can embrace it, repress it or deal with it.”

Finding a 'new normal'

Those memories will stay with one the rest of their life. Bills recalled that on his visits with the elderly, many still express grief over a child they lost more than 50 years ago. Though the memories can also bring sadness, being able to feel joy again is part of what many call a "new normal."

“That is a powerful phrase, and it helps people to think that way because if you talk about getting over, getting past this, putting it behind you, it is very unhelpful,” said Ashton. “What is more helpful is talking about a new normal and how you can assimilate this experience into the rest of your life. Can you find something about this that can make the rest of your life meaningful in some way?”

“For most people, there is a coming to terms of living within a new normal and establishing that new normal for their lives,” Pascoe said. “They still grieve the loss, but it can become a different type of grief. You are not still living in that intense day-to-day pain of that, but you recognize your life (is) forever changed.”

Like Havertz, the Ashtons also put their feelings to paper in "But If Not," the series they co-wrote, which has helped them as they move toward a new normal. Ashton noted that there is no hurry in the grieving process and that one does not necessarily grieve less with time, but they do grieve less often.

“With time you find you are able to go to those moments and bring them forward when you want to,” he said. “This is almost a tender mercy of God, that they are able to remember less of the trauma or the pain and the hurtful parts of it and more of the pleasant memories over time.”

“I have counseled people, it is OK to feel joy again,” Fleming said. “The sense was, ‘If I feel joy I am letting go of how much I love this person, and so I can’t let go of that pain.’ … Sometimes part of the grief is allowing yourself to step out of that pain without feeling guilty.”

Ashton said one important thing to recognize — both for parents who have lost a child and family members who are trying to cope — is that “feeling is healing.”