Definitions of the word grief range from the simple  (“sadness associated with loss”) to the more analytical — “a natural process of reacting physically and emotionally to a perception of loss. ”

Whatever the definition, grief isn’t a pleasant experience, and when the person who’s grieving is a child, it can be a gut-wrenching, perplexing and often misunderstood process for parents.

This article focuses on the experiences of parents whose children were exposed to the death of a loved one with neuromuscular disease. The basic question it asks is: What steps did parents take to deal with and help their children survive the ravages of grief?

Clinical research and parents concur on the need to acknowledge and deal with grief, whether involving children or adults:

• Only by grieving can we get on with the business of living … yet it’s the hardest task we’ll ever face.
• By not avoiding the pain of grief, we take the first step toward learning from it.
• Trying to escape from pain or refusing to admit that it exists won’t make it vanish.
• If we don’t grieve, pain holds us fast.

Health care professionals and parents also agree that one of the first steps required for a child’s grief to emerge is for the child to recognize and admit that a loss has occurred.

Give Them Words

Jeni Stepanek has an adult form of mitochondrial myopathy. She has lost four children to the infant-onset form of the disease, the last of whom was MDA’s 2002-2004 National Goodwill Ambassador Mattie Stepanek. At the University of Maryland, Stepanek is nearing completion of a doctoral degree in early childhood special education, specializing in anticipatory grief.

When Mattie was 3½, his brother Jamie, a year older, died of causes related to his neuromuscular disease. Two other siblings had already died. Stepanek said she sought the advice of a psychologist on how she and Mattie should deal with the loss. He told her not to talk about it — to put Jamie’s belongings out of sight and suggest to Mattie that he’d gone away on a trip.

“I knew it was absolutely wrong, but because he was a trained professional I followed his advice for six weeks,” she said. “During that time, Mattie grew increasingly angry. He would bang his head on the wall, rip up books and have screaming tantrums.

“Finally, I just picked him up and said, ‘Mattie, what’s wrong?’ He went straight to the closet and pulled out Jamie’s toys and blanket, put them all on the bed and began sobbing. I knew then that I had to give him words to express his feelings.”

She said they talked about Jamie and things about him that made them both happy and sad, and then she gave him ways to act out his feelings without harming other people, things or himself.

“Children experience sadness, anger, confusion,” Stepanek said. “You have to teach them words and ways to express those things without being destructive. You can’t just say, ‘Don’t be angry.’

“I had to teach Mattie that, yes, we were going to cry for a while, but it was also OK to laugh again. I had to learn to cry in front of him. I taught him the same way I taught him reading and writing.”

Keep Memories Alive

Alison Teichgraeber is a professor of English composition and literature at Houston Community College. Her husband, Pat, died in 2004 at age 40, three years after receiving a diagnosis of amyotrophic lateral sclerosis (ALS). Their sons, Matthew and Justin, were 9 and 6.

Teichgraeber said she and the boys attended Pat’s military funeral at Arlington National Cemetery, and confronted their loss and pain head on. However, she said, their grief was probably compounded by the fact that she grew deeply depressed. The boys expressed their grief by not wanting to leave the house or play with friends.

During that time, though, Teichgraeber persisted in keeping them all reminded of Pat.

“I had removed most of the photos and memorabilia from around the house, but I strategically placed photos and items of Pat’s in each boy’s bedroom. Our house is not a shrine to their father, but the mementos help remind Matthew and Justin that they live in a home full of love,” she said.

Teichgraeber said that as a young single mother she didn’t do everything right in coming to grips with grief, but she was learning. She recommends the following to parents in similar circumstances:

• Create a scrapbook that focuses specifically on the lost loved one.
• Create a memory box that contains special things such as awards, letters, pictures, collections and a favorite piece of clothing.
• Bake a birthday cake to celebrate the anniversary of life as opposed to the death anniversary.
• Have children write letters to tell the lost parent how the child is coping, and place the letters at the gravesite if possible.
• Laugh, often.

Teichgraeber said she and the boys participated in two grief counseling groups specifically geared toward children. Her children learned they weren’t alone in their loss, that other children also had lost parents.

Time of Year

Jeni Stepanek’s son Jamie died on Nov. 5, 1993. In the two subsequent years, Stepanek noted that Mattie grew depressed and confused when fall arrived.

When she asked him about it, he blurted out, “I remember we came back from burying Jamie and we threw out the pumpkins.”

He remembered that both of them had carved jack-o’-lanterns for Halloween. After a week or so, the pumpkins got yucky and had to be tossed.

“That’s what he remembered,” Stepanek said. “Something sad happened, and his brother went away. But it wasn’t just one day … it was a season, and pumpkins evoked his sorrow throughout that season.”

Stepanek pulled out a calendar, pointed to Nov. 5, and said, “This is the day your brother died, Mattie. We can go to church, we can pull out the Jamie box and talk if you want.” 

From that day on, Nov. 5 became Jamie’s day. It became “a day not of mourning but of focus. What it meant was that [Mattie] no longer had to go through the pumpkin season; he had a date” on which celebrating Jamie’s life could be both sad and joyous.”

Not Lost in the Shuffle

Donna Albrecht, author of Raising a Child Who Has a Physical Disability (Wiley, 1995), had two daughters with spinal muscular atrophy (SMA). Katie died at age 13 when her sister Abby (who is now 31) was 11.

Albrecht, who led MDA support groups in San Francisco for more than a decade, said, “In our home, Katie and Abby always shared a bedroom. But my husband, Mike, and I realized that we needed to differentiate between the girls in everyday life to maximize the likelihood that whoever lived longer would have a strong sense of being herself and on her own path, not just physically, but also socially, academically and psychologically.”

The Albrechts knew that if one daughter died, the surviving sister would mourn her, but they didn’t want her feeling guilty for surviving with the same diagnosis. They made sure each girl knew she was different from her sister in many ways.

“Katie wanted to die at home, and we honored her wishes. That doesn’t mean we had a storybook situation,” Albrecht said. “Because of other family medical problems she’d inherited, her last few months were especially challenging.”

During that period, “We relaxed our rules on Abby. She was suddenly able to spend whole days over at friends’ homes to reduce her exposure to the hard times. Mike and Abby share a passion for everything computer, so they spent many weekend days at computer shows and stores.

“When Katie was having an especially bad day, we’d call a friend who had kids to come and pick Abby up. Abby remembers that time and is glad we handled it the way we did,” Albrecht said. “Many kids feel isolated and neglected while their parents focus on the dying child. The special day trips she took with her dad reminded her that she hadn’t gotten lost in the shuffle.”

After Katie’s death, Albrecht said, “Except for removing Katie’s medical equipment, we left the room they had shared just as it was for a year. Losing Katie was all the change any of us could handle for quite a while.

“But time marches on and there comes a time we’re ready for a change. There wasn’t an ‘aha!’ moment when we decided it was time to redo their room so it was all and completely Abby’s; it just came over us gradually. We painted the walls, and Abby and I shopped and shopped and shopped for new furniture to reflect her taste and have the more grown-up flair that a 12-year-old needs.”

Just Listen

Despite many studies on the subject, helping children cope with grief remains a process that varies from child to child, family to family.

One of the most discerning responses to this issue came from Donna Schuurman, national director of the Dougy Center for Grieving Children and Families in Portland, Ore.

“The best thing adults — parents, counselors, therapists, teachers, youth workers, aunts, uncles, neighbors — can do for grieving children is to listen. To listen, that is, not just with our ears, but with our eyes, our hearts, our souls. To not presume we have (or have to have) answers.”