Living with Loss

We are drawn to one another and make a connection -- we are part of an exclusive club. Not because we want to be, but because we have to be. We understand each other and the chest-crushing, gasping-for-air, dizzying pain we all endure. We share the anger and the heart-wrenching guilt, and we know that there is no one else who could possibly understand how it feels. We are lost souls, zombies going through the motions, exasperated, confused and wondering how the sun could continue to rise and fall, the seasons insist on changing and other people continue their day-to-day life as if nothing has changed -- as if the whole world is not inexplicably different now. We are parents whose children have died.

There is no going back to your old life -- to live is to learn a new life, one without your child. Every parent dreams of watching their child grow up, become an adult. They expect to watch them learn, grow, make mistakes and learn from them. They expect to cheer them on and congratulate their achievements, to share their dreams and comfort them in times of sorrow or disappointment. With this gone the direction of life has to be reorganized, re-thought, relearned.

"I feel like Stephanie's death has changed me; it alters your course in life, emotionally and mentally," said Theresa Kowalski, whose 19-year-old daughter Stephanie died in a car accident in July 2001.

Grief is a natural experience and people expect that at some point they will bury their grandparents, their parents or possibly their brothers or sisters. It somehow seems unnatural, though, when someone has to bury their child.

"Whether you lose a baby, an 18-year-old or a 30-year-old," said Carol Lowery whose son Scott died in 1997 at the age of 28. "You don't expect to lose your child, it's just not the natural order of things."

In terms of loss, said licensed therapist Vivian Finlay, every kind of grief is different. But in terms of stress factors in life, sociologists and psychologist say the loss of a spouse and the loss of a child are equally stressful. "Because when a child dies prematurely, it's out of order," she said. "And when a spouse dies everything is interconnected."

Surreal doesn't even begin to explain how you feel when someone tells you your child is going to die. I never really understood the meaning of the word until that day. It was surreal-times-a-hundred. Times a thousand. The floor drops out from under you, you can't see clearly, everyone and everything around you looks strange in a familiar way, every word after those words -- "I don't expect her to make it through the night" -- echoes somewhere in the back of your head, not making sense. Time from that point on has no existence. You are floating on some other plane -- even your own hands before you that reach out to hold onto your child and not let her escape seem as if they belong to someone else. "This can't be happening, this can't be real, dear God no!" repeats over and over again in your head -- your only cognizant thought.

Grief is not something we have to learn -- we grieve because we are humans living in an imperfect world. It is not something inflicted upon someone. It is, though, a process we have to go through. Some people who are grieving fear that to go through it, to face it, means in some way to diminish the one they have lost. It is not. And it is not something someone else can do -- the grieving person has to face it alone; make their own decisions about how their particular path will go, feel their own feelings and cry their own tears.

"It has been over seven years since we lost Doug," Karl Lund said of his 10-year-old son. "It took a lot of steps before we could say let's become involved in a help group. We decided maybe we could share our experience and help others. But it wasn't right away -- you just can't -- it's just too big."

Although the only people that can truly understand what they are going through is someone who has gone through it themselves, no one will know exactly how they feel. Grief is specific to each individual -- for some people it is a slower process taking years, for others it is a process of two steps forward and one step back. The important part about connecting to others who are grieving is the understanding that the things they are feeling, be they emotional or physical, are normal. The thoughts that make you wonder if you're crazy, or "how could I be thinking that," the exhaustion for no apparent reason, lashing out at other loved ones or at people who don't understand you are still grieving a year, two years, or even five years later -- these things are normal for your grieving process and talking to or reading about others going through the same things makes it somewhat easier to bear.

"Sometimes you think you're doing well and then it catches you by surprise," Pastor Kathy Franzenberg of Trinity Lutheran Church said at a recent grief support meeting. "You can look at that as an invitation to go deeper, to work through your grief."

Every person grieves in their own way -- some choose to seek private or group counseling, some embrace their faith, some look towards their family and friends, or a combination of these.

The Compassionate Friends, a nationwide nonprofit organization originally founded in 1969, has adopted the idea that no one can understand what a grieving parent is going through except a grieving parent. The organization is geared toward assisting families after the loss of a child "toward positive resolution."

Through the program, seasoned grievers reach out to newly bereaved and offer grief information and support. In this way, bereaved parents in all phases of the grief process can heal by directing their energy outward. There is no religious affiliation and there are no membership dues or fees associated with the organization. Lund and his wife Joyce facilitate the Valley TCF group that meets at 7 p.m. at Trinity Lutheran Church and Resource Center.

Wasilla resident Kelly Marre helped found the Valley TCF along with the Lunds approximately three years ago. Her 11-year-old son Logan died in October 1998 after a long battle with leukemia. "It's a definite necessity to have people around you who know what you are going through," Marre said last week. She found comfort and strength in her meetings with TCF, she said, but other projects keep her busy now and she attends less often than before.

"I feel like I'm not moving, but the rest of the world is moving on."

"I'm feeling like a piece of glass -- and the slightest thing will make me break."

"It takes a lot out of me; to go to work and put on a face. Then to go home and be alone with my thoughts. I'm angry at the rest of the world for going on with their lovely lives."

"Our son turned 21 today, but on the flip side someone else is always 10."

"I feel better by helping someone else."

"He may not be physically present, but our son is always with us."

There is no such thing as "getting over" the loss of a loved one. Grief is an ongoing process with no specific length of time involved. While the loss and pain remain, the bereft eventually learn to live again, to gain control of their lives, and to find meaning in life. This process could more aptly be described as recovery -- an ongoing process.

According Finlay, grief is our response to a loss. "We all have losses and respond in our own way," Finlay said at a recent grief support meeting. "It is a normal reaction to the break of a bond. There is no way to compare it, no right way to deal with it."

There are, however, what are considered normal or abnormal ways of dealing with grief. Among the normal reactions are emotional outbursts, denial, anger and disbelief. Abnormal reactions include denial to the point of pretending the loss simply didn't happen. If the natural reaction to death is not dealt with in normal ways, Finlay said during a later discussion, they can surface in other ways that are more dangerous -- alcohol and drug abuse, unchecked anger or jumping into a relationship in search of replacing loss.

The holiday season is an especially hard time for those who are grieving. Why? Holidays are promoted as a time for coming together with family, for sharing love and happiness -- a difficult thing to do when the person you most want to share that with is gone. Holidays and anniversaries of a child's birth and death can be stressful, and while it is recommended that a bereaved parent allow time and space for their own emotional needs, it is also recommended that the entire family be involved in making plans for those days.

Wendy Hale, whose son Christopher died in 1999 at the age of 21, said what works for her family is to shake things up. "I would tell [a grieving parent] to pick a different day -- the day after or the day before Christmas -- and just do something that's different; go somewhere different. So you're not just sitting there with your memories," Hale said.

Marre suggested reaching out to others. Each year her family buys telephone cards for the entire inhabitants of Seattle's Ronald McDonald House on Christmas, her son's birthday and on the anniversary of his death.

"It's an ongoing project," Marre said. "People don't realize that 30 percent of the people staying there are from Alaska," she said of the home away from home for children being treated for cancer and their families. It was where she and her family stayed during Logan's fight with cancer.

Finlay also offered some suggestions for different ways to approach the upcoming holiday season. First and foremost, she recommends grieving people look within themselves and decide what they can and cannot handle. Make a list of the things normally done during Christmas and rate them in order of their importance, she said. Is it really that important to prepare a huge feast? Or is it more important to be with friends and family? Does it matter where you meet?

If you are usually home for the holidays, maybe going somewhere else would be a good idea, she recommended. Suggestions include volunteering for one of the many charitable organizations that serve meals to those less fortunate or creating a new tradition that commemorates a lost child.

"You grit your teeth and keep going," Lowery said of the holidays. She and husband Howard are both retired but donate time and energy to charitable organizations. Howard is a board member for Habitat For Humanity Mat-Su.

"With years it gets easier," Carol said, "but it never goes away." They, too, changed their holiday traditions and rely on close family, friends and neighbors to support them through difficult times.

While someone grieving often needs time to be alone and to simply "feel," continuing isolation is not a good idea, either, Finlay warned.

Most important was communication. Talk to family and friends and tell them what you can handle and what you cannot, she said. Delegation is the key to survival. Explaining to children why the holiday may differ from past holidays can be difficult, but Finlay suggests putting it into terms they can understand may help.

"If somebody hurt their back or broke their leg, and it's right before Christmas, the mother or father would say 'I can't do it, I'm not allowed to get out of bed,'" Finlay said. "It's the same thing. They don't have such an obvious excuse, but it's the same -- you say my heart is broken, and I have to heal."

So many people offer help when you lose a child, but so often the words are like a knife in your gut. Well-meaning friends often have no concept of how their words feel when all you want to do is lay down and die. 'Do you need anything?' they ask. Yes! I scream in my head over and over again. I NEED my daughter back! I need to see her smiling face, to smell the way her perfume blends with her body, to hear her out-of-tune singing above the radio. I need to watch her grow up, to see her in her wedding dress, to hold her hand when she has babies. 'Don't ask me what I need,' I silently scream.

Friends, family and acquaintances of a grieving parent are faced with a situation they often cannot grasp and end up feeling helpless. Too often their feelings of inadequacy in dealing with the situation result in words or actions that hurt rather than help. What should people say to a grieving parent? What should they not say? Or should they avoid the subject altogether? More often than not a grieving parent wants to talk about their child. The overwhelming response is that, though painful and it may bring tears, talking about a child who has passed away offers reassurance that others have not forgotten.

"As long as we keep remembering her in our daily life … as long as we mention her name, she'll never die -- she'll always be with us," said James Waddell, whose daughter Olivia died at the age of 22 months from epilepsy. He and his wife Sherry are members of TCF and also host a Web site that commemorates their daughter and educates people about epilepsy.

"It's healthy to talk about it," Hale agreed. "If they talk about it, you know they haven't forgotten."

Occasionally grieving parents find themselves being the consoler, rather than the consolee.

"Sometimes, when it comes to other people, people who haven't lost a child, I just have to understand that they don't understand," James Waddell said. "We found that we actually have to be sympathetic to those who are trying to be sympathetic to us."

Waddell said after his daughter died some friendships ended as the couple moved forward in their grief process, simply because it seemed easier for both parties.

"I want to talk about her and she still exists, she's just not here," Kowalksi said about her daughter. "It stops conversations sometimes and I've learned [from it]," she said, noting that some people are just not prepared to deal with it. "It's different for everybody how they handle it."

Grieving parents suggest others should simply listen and follow their lead. There isn't anything other people can say that will "make it better," but knowing they will listen, validate their pain and understand the grieving process will help. Also understanding that the grieving process has no time limit -- when everybody is back to their own lives and the grieving parent appears to be also, know that there will always be struggles and moments of tears, guilt or anger.

"Sometimes I feel guilty because I don't cry every day for Stephanie," Kowalksi said. "It's part of the healing, part of the journey. That's how grief is, you never know what piece of it is going to surface."

Another source of pain and awkwardness comes when someone doesn't know about a parent's loss. When asked, Marre said it is never easy.

"I don't think that stumbling feeling ever goes away. It just depends on the situation. It puts people in an awkward position," she said of telling them about her two children and the third that will always remain 11 years old. "But I refuse to deny his right as part of my family. I state it and change the subject, then it's not awkward for them or me."

Grieving parents suffer from low energy and heightened stress levels. Feeling drained and unable to move forward is common. It seems like a contradiction, then, that so many become involved in community projects, educational programs and nonprofit organizations. This stems from a need to remember their child, wanting to keep their memory alive, wanting something "good" to come of all the bad, and the hope they can make someone else's journey less difficult.

Losing a loved one can make you more compassionate, more giving and more honest with those around you, according to grief counselors. While on one hand a troubled relationship may fall apart, a good relationship may become stronger when a parent or parents are grieving.

"Being married has helped," Carol Lowery said. "When one of us is bad, the other can help. We don't usually fall apart at the same time."

The strength to move on is often gained from helping others. And keeping busy means not dwelling on the loss.

"As a parent you feel like you have to have a mission, you have to keep yourself directed at something," said Hale, who is currently devoting her spare time to the Garden of Reflection, an addition to Iditapark in Wasilla. The garden will be a quiet place set aside for remembering those who have passed on.

Each person has to decide what they are capable of doing at their moment in the grief cycle, however. It is their pain, their loss and what they choose to do -- or not do -- is entirely up to them. Someone who is still in shock may have difficulty just getting up in the morning and getting dressed; they should not feel they are somehow required to go out and change the world. Their number one priority is taking care of themselves. Each person, and each person's grief, will be a unique journey.

"It's such a personal, private journey," Kowalski said. "Even though we both know how it feels to lose a daughter," she said, "I still can't take that pain from you. I can empathize, but I can't walk across that desert for you. We each have to do it in our own way."