‘Grief is an Illness’ and Other Myths Surrounding Loss

By David Daniels, M.D. -

Destructive myths abound concerning the loss and grief process. First, contrary to some views, there is no one “right” way to die or grieve; our personality type makes a difference. Some of us go in peace and some screaming.

Many people don’t go through all the steps in the dying process outlined by Elizabeth Kubler-Ross (On Death and Dying) or in the order she states. She lists in order: shock; denial; anger; bargaining; depression; and acceptance/resignation. By bargaining, she means asking for a favor or another chance, often based on the promise of good behavior. Depression is not inevitable, and some people don’t feel angry.

With loving care and the receptive awareness and acceptance that go with presence, many people realize that life is each day, that wholeness is the goal, not postponing death. We can heal the heart while the body is dying.

There are myths about the grieving process as well. The main ones are that grief is an illness, something to get better from, and that you grieve first and then come back to live life as though grief and life are linear processes.

In truth, grief is a natural process. It lets us know that we care/love. The natural sadness of grief often comes in waves, unexpectedly. Trying not to grieve often causes persistent distress and even depression.

The natural process involves leaning into pain, not away from it and releasing through the pain into love and life in each moment. Life and grief go hand in hand in a natural co-existence. These realizations, when truly lived, make both the death and grief process transformative rather than transfixing. These best or healthy principles about the dying and the grief processes have been honored in both hospice and Anamcara (soul friend) care that goes back over 1000 years.

Dr. David Daniels, MD is clinical professor of psychiatry and behavioral sciences at Stanford Medical School, a leading developer of the Enneagram system of nine personality styles, and co-author of The Essential Enneagram (Harper Collins). 

GRIEF SUPPORT 101: How to Help a Bereaved Friend or Loved One

By Fran Dorf -

Thirty years after her son’s death, my friend still smarts when she remembers all the people who pointed out how lucky she was to have two other children. Another friend, whose brother recently died, grumbles that everyone keeps telling her it will get better with time. Another, whom I originally met in a grief support group, for years avoided anyone who hadn’t also lost a child. Having received my share of insensitive, even hurtful, comments after I lost my son, Michael, thirteen years ago, I certainly understand. Why do people so often say and do the wrong thing? And why do the bereaved often feel stabbed by well-intentioned comments that would normally roll right off our backs?

For all the violence and death Americans see in our “entertainment,” we want our real pain shrink-wrapped, bloodless, and over fast. Unfortunately, there is no quick fix to alleviate the volatile, long-lasting, often ugly emotional stew that is grief; no magic potion to lessen the pain, despair, resentment, jealousy, shock, guilt, anger, numbness, ambivalence, bitterness, and anxiety. Let’s face it, grief can be messy. There can be appetite, sleep, and concentration issues; feelings of isolation and rejection; even fear of going crazy or losing control. All this makes most people uncomfortable.

If you want to comfort a grieving friend or relative, your primary task is to validate his/her feelings. Don’t say anything that minimizes those feelings-which, in effect, de-legitimizes them.

WHAT NOT TO DO

I’ve found that de-legitimizers can be divided into six categories:

Babblers: These people chatter on about the weather, a friend who had a heart attack, and so on. The bereaved can’t be distracted. Ignoring an elephant in the room just makes it bigger. Be self-aware. Maybe you’re chattering because you do so characteristically, or because you feel nervous and vulnerable. This isn’t about you.

Advice-givers: People often give advice such as, Start dating again, Have another child; Take a long vacation; Concentrate on your other children; It’s time to get over it; Remember the good times. But when we hear this advice, we may interpret it as, “What’s wrong with you? If only you’d take my wise counsel, you’d feel better.” I remember people advised me to take a sedative, but somehow I knew I needed to shed a certain number of tears (more than I could ever have imagined) and that it would be counterproductive to try to mask my pain with medication.

Platitude-offerers: When you spout clichés like, God must have wanted him, He’s in a better place, You did everything you could, the bereaved may feel offended. You may prefer to believe God must have wanted him, but the bereaved person may hate God at the moment, and thus feel de-legitimized for feeling what she feels.

Pseudo-empathizers: It’s particularly distressing for those experiencing “high grief” as from child loss to hear that you know just how we feel. If you haven’t experienced the same loss, you have no idea how we feel-and maybe not even then.

Lesson-Learners: There may be profound lessons to be learned from tragedy, but it’s best to let others learn them in our own time and way. Don’t tell us, Everything happens for a reason, You never know, We must learn to appreciate our lives, or Life is short.

Abandoners: Whatever the conscious or unconscious rationalizations-fear of saying the wrong thing, or feeling uncomfortable in the face of grief-if you walk away from a friend who needs you, you’re probably walking away from the friendship permanently.

HOW TO HELP

Take your cues from the bereaved person. If she’s sitting quietly, sit beside her. If he’s using humor to cope, laugh a little. Offer a hug or hold a hand.

Let us tell our story, in as much detail as we want, even if we repeat it, even if it’s horrific and hard to hear. It actually helps people to tell the story.

Read about grief, or search online under “grief” or “bereavement.” You honor your bereaved friend by learning all you can. Good books include, A Good Friend for Bad Times (Augsburg Fortress) by Deborah Bowen and Susan Strickler, and, I Wasn’t Ready to Say Goodbye (Sourcebooks) by Pamela Blair and Brook Noel. I also recommend my own novel, Saving Elijah, which was praised by the “Washington Post” for its “tough minded interrogative approach to grief, and which for all its supernatural trappings and its wise talking, spectral literary device, is essentially an extended metaphor for the psychological process of grief.”

Acknowledge the deceased person. Tell a wonderful anecdote. Even now, I am grateful when someone mentions Michael. Just saying his name aloud brings him back into the world.

Offer practical and specific support. Make calls, pick up the kids from school, cook a meal, mow the lawn. Don’t say, “Is there anything I can do?” Or, “Call me if you need me.” The fog of bereavement is thick. Decide what you can do, given our relationship and appropriate cultural/religious considerations, and then do it.

Stay in touch. Remember that when the formal mourning period is over and the last casserole is gone, we’re still here, alone and grieving. Now is the time to show up.

Contact the bereaved on significant days-birthdays, death days, anniversaries. These are difficult, especially “firsts.” Don’t avoid, ignore, or forget them. We haven’t.

Banish the word closure from your vocabulary. There is no such thing, and who would want it, anyway? We incorporate our losses into our lives. I’m a different person than I was before I lost Michael, and my loss informs every day of my life. Psychologists have proposed many ways to describe how we find a way to live with loss, but the one I find most useful is that we must “reinvest” in a new reality without the lost one. I eventually wrote a novel and my husband and I established an educational program for toddlers with special needs, in memory of our son, but reinvestment can be small and private too, revealed in a change in priorities, attitudes, interests or goals.

Meet us where we are. Don’t have expectations. Don’t compare one grief to another. Remember that grief may take years to work through. Be prepared for tears, moaning, sighing, wailing, trembling, even screaming. Don’t take anger personally. Remember that Elizabeth Kubler-Ross’s five stages of grief-denial, bargaining, anger, despair, acceptance-come not in stages but in circles and waves like a roller coaster.

The best definition of compassion I’ve ever found is a Buddhist one: “Compassion is willingness to be close to suffering.” It takes work, stamina, and commitment to support the bereaved. Be present. Be humble. Observe. Reflect. Allow silence. Don’t judge. Accept.

Listen. .
* * *

Fran Dorf is the author of the novels A Reasonable Madness (Birch Lane, Signet, Vivisphere); Flight (Dutton, Signet, Vivisphere) and Saving Elijah (Putnam), which a starred PUBLISHER’S WEEKLY review called, “a stunning novel that crackles with suspense, dark humor, and provocative questions.” Part ghost story, part family drama, and part thriller, Saving Elijah was inspired by the loss of Fran’s son, Michael. Fran also holds a master’s degree in psychology and conducts “Write-to-heal” workshops to help people cope with grief, trauma, and/or loss.

Her website/blog is http://www.frandorf.com . (THE BRUISED MUSE).

A version of this article originally appeared in Bottom Line/Personal, June 1, 2008

Little People with Big Hurts

By Cathi Lammert, RN -

Most children who have a sibling that dies due to a pregnancy loss, stillbirth or in the first few months of life will experience a grief reaction.  However, often times, their grief is overlooked or discounted. Parents may be so overwhelmed by their own grief that they are unable to assist their children with their issues. Parents often ask me “Will my child be negatively affected by the death of their baby sibling?”  I have to say the answer to this question is, “Usually not, if the child’s grief is acknowledged.” In this article, I hope to provide some direction in ways to assist little people with their big hurts and ways to validate their feelings.

In Helping Children Cope with the Unexplained Death of Infant, the author, Dr. Charles Corr, outlines four basic psychological tasks that comfort grieving youngsters. These include:  Understanding what has happened, identifying and validating their feelings, commemorating the life of the sibling(s) who died, and learning to live and love again.¹ In the following paragraphs, I will address each of these tasks and provide insight and direction from my own experiences. In assisting with the difficult journey of grieving, one should note that a child’s personality, past life experiences, developmental stage, and past reactions to loss will affect his/her reaction to the death of a sibling.

Understanding What Has Happened

Very young children ages two and under do not fully understand what has happened, but they are aware of a change in their parent’s behavior.  Children sense that their lives have changed dramatically, and they may become irritable or clingy. Sometimes parents may not have the energy to meet the many emotional and physical demands of their little ones during the demands of their own intense grief. It is important to try to maintain a normal routine even if it requires the assistance of family and friends with the child’s care.

Preschool children need to have things explained in very concrete terms. We need to be careful with our words; children become confused with statements that are not literally clear, for instance things such as “the baby is sleeping with God.” This statement may cause them to be fearful of sleep and of God.  Also, children of this age do not understand the finality of death and think heaven is a place one can visit temporarily and that the baby is coming back after a while.  Parents may become frustrated as children have repeated questions.  Often simple answers will suffice as children do not want detailed explanations. As the child matures, he/she will have a better concept of death.

School-age children are often frightened by death. They may have fears of sleeping alone or being apart from their family. They may need extra reassurances and more time with you.  Also, children of this age are very curious. Of course, this means they ask many questions and want more detailed explanations. All questions need to be answered and if we as parents do not respond to these questions, their peers will. Other children’s explanations may confuse and upset them even more.

Identifying and Validating Feelings

Parents have shared with me their concern about their preschooler because he or she is sad one minute and happy the next. Preschoolers grieve in spurts and the intensity is not as great as that of an older child. Often, children of this age will act out their feelings through their play. This is very therapeutic and is a way for them to positively release their feelings. Like adults, children respond to grief in many different ways. They may act out their anger by being destructive. It is important to acknowledge this anger and frustration so they can move past it. It can be helpful for them to have a punching bag or pillow to release those feelings. It is also important to have conversations about the loss your family has experienced and how your child has responded to the death with the child’s teachers, coaches, scout masters, and other caregivers. It is helpful to also give these individuals some bereavement literature on ways to help children with the death of a baby.

Commemorating the Life of the Sibling(s) Who Died

A large number of people in our society believe children should not be exposed to death. Parents often are not sure if they should include their child/ren at the time of loss, at the funeral or in the commemorating in the years to come. Parents know   their children better than anyone so these decisions are very personal and what is right for one many not feel right for another.

The parents of children who experience early pregnancy loss may find it more difficult to commemorate this life as often the only tangible evidence they have is an ultrasound picture.  Some commemorative ideas that families experiencing early losses have used are organizing a memorial service at their church, participating in a quarterly group burial service, or having a private intimate service with their family. Others have planted a tree or designed a garden.  Some families find connecting to a specific object such as a teddy bear or a piece of jewelry for themselves and the children is meaningful.

When there is a funeral and a viewing of the baby, sometimes parents are not sure about how to involve the children. The child may or may not have seen the baby at the hospital.  Talking to them about the choice and informing them what to expect at the viewing and the funeral helps the child and parent make a decision.  Some children may come to just the viewing and not the funeral and some want to be a part of the entire ritual. It is always helpful to have someone there to support the child/ren in case the parents need to leave.

Most children love to draw, color or write poems or letters.  Giving them the opportunity to create a special picture or letter to place in the casket may bring them comfort. Children loved to have their own keepsakes and may find having a special stuffed animal, piece of jewelry, baby’s handprints or footprints, and/or baby’s picture quite helpful. This connection to the baby may be a treasure for years to come.

Annual memorial services or walks held by support groups are a wonderful way to involve children. Sometimes at the time of the loss, the children may not have been a part of the initial ritual. Group memorials are opportunities to share with other bereaved families and a means to positively remember their baby.  This may be the first time a child has had an opportunity to remember their sibling.  At memorial services, children as well as parents can participate by writing a message on their balloon and releasing it, placing a holiday ornament on a tree or lighting their own candle.  

Lastly, family rituals such as placing flowers on the grave, releasing balloons, lighting candles, planting special plants etc in honor of the baby on birthdays, anniversaries, and other difficult days can be helpful. Some families have found planning something special with their children during those remembrance days such as an outing to movie, dinner or even a day trip is a positive means of healing with their family.   

Learning to Live and Love Again

Children will not forget their experience of having a baby brother or sister die.  However, they will be able to lead productive, wonderful lives if given permission to openly mourn and have their feelings validated. They need support and understanding of their grief in order to be able to integrate this loss into their lives.  As they move through each developmental stage, new questions may be asked, and they may need more in-depth answers.  This does not mean they are regressing, but rather they are maturing and need to clarify some issues in their hearts and minds. Some children adjust to this loss easier and others need extra help with a support group or therapist. 

In closing, your children are often your greatest source of comfort. Their openness and non-judgmental attitudes may allow you to express yourself and give permission to talk about your baby.  Bereaved children have learned about grief at often a very young age. However, often with a grief experience, growth does occur and gifts such as compassion and kindness follow. These may be the best of many gifts their brother or sister has left them.

¹Charles Corr, PhD., Building Blocks:  Helping Children Cope with the Sudden and Unexplained Death of an Infant, (SIDS Resources, Inc. Missouri Department of Health, Division of Administration, P.O. Box 570, Jefferson City, MO)

Sharing Newsletter: Volume 18, Issue 1; National Share Office, www.nationalshare.org

Cathi Lammert, R.N., is Executive Director of the National Office of SHARE Pregnancy and Infant Loss Support, Inc. www.nationalshare.org.  As a bereaved parent, Cathi combines her personal experience with her education and professional background as an obstetrical nurse. Her son, Christopher Michael lived just 4 days and died due to Hydrops Fetalis, a complication of Rh sensitization.  Cathi was a guest on the radio show Healing the Grieving Heart with Dr. Gloria & Dr. Heidi Horsley, to discuss Finding Help and Hope After Pregnancy Loss.  To hear Cathi being interviewed on this show, click on the following link:  www.voiceamericapd.com/health/010157/horsley011509.mp3  For more information, you can e-mail Cathi at:  clammert@nationalshare.org

How Will You Remember Your Loved One?

by Carol O’Dell -

We avoid thinking about or dealing with death at every turn. Even caregivers who are caring for their aging parents try not to think about the inevitable end. Cancer, Alzheimer’s, heart disease, stroke, diabetes, combined with age will eventually claim the lives of those we love. And sadly, by not fully anticipating and participating in this momentous event, we’re left scared, in doubt, and not knowing how to die-or be with someone we love when the time comes.

Who will teach us? How will we learn?

I recently interviewed Rachel, a young mother in my community who experienced a tragedy-she lost her two year old little boy, Tyler, in a swimming pool accident.

As I sat with Rachel and listened to her story, I immediately sensed she had wisdom and insight well beyond her years. She’s handled grief with grace, forgiveness, and determination. My own worries seemed insignificant.

Rachel’s story got me to thinking. How will we remember our loved ones? What memorial, statue, headstone or story will honor those who have touched our lives?

While I have nothing against cremation, sometimes people need a place to go-it’s important to create a sanctuary or sorts-a place to be, to pray, to think and meditate. A place to remember.

My Daddy is buried in Atlanta, and so this Father’s Day, I’ve had to create a new place for “us” to meet and talk.

I like to spend a few minutes catching up with my daddy about my life. I have a bench overlooking a lake in my backyard. He would have liked it here. He loved to sit outside and talk. That’s where I’m headed this Sunday.

I’m including an article I recently wrote about Rachel and a place of remembrance for all those who have lost someone they love. As you read her remarkable story, I’m sure you’ll agree-we can all learn from her-how to love, and how to hope again.

Angels Among Us

There’s an angel on Amelia Island. The childlike face lifts toward the sky, arms outstretched as though holding something invisible, and bronzed wings gleam against the stark Florida sun. The inscription at the bottom of the statue reads, “Angel of Hope.” It is encircled by a short brick wall and eight benches for seating with a loved one’s name on each one. I found this “Angel of Hope” one afternoon on a photography/bike trek around the island.

I stopped to take a picture and began to read the inscription on the back of the statue: “The Christmas Box Angel,” and I thought of Richard Paul Evans’ book, The Christmas Box, about a woman who mourns the loss of her child and finds comfort at the base of an angel monument.

At the base of the angel I read, “For all the children” and began to put it together-the benches, the names, the stones lined up at the base, the bouquet of flowers indicating someone had been here. 

This angel is a place of remembrance for families who have lost a child. It’s a sacred gift given by other bereaved parents and is available to anyone who would like to come, sit, and remember. 

I thought of Tyler, a purely sweet loving laid-back two-year old with beautiful big brown eyes, the son of Rachel and Patrick Pennewell. I remembered the day I found out Tyler had suffered a swimming pool accident.

Rachel, his mother told me, “Tyler was our angel. He had a purpose in being here. Sometimes I would just look at him. He was such a calm, knowing soul, and I’d wonder, you know something, don’t you? Some things he understood here on earth.”

After Tyler’s passing, Rachel and Patrick found the community of Nassau to be their angels who sustained them in those early weeks and months when shock turned to grief. 

“I’ll never be able to thank the people at our church and in our community for all they did. How can I ever show them what this meant to us?”

Rachel said it’s so important for bereaved parents to find ways to give back because, “What else can we do? You don’t stop being a parent. You have to find a way to give, and in that giving, your child lives on.”

I asked Rachel how she got to a place of peace.

“Tyler’s life completely transformed the way I saw myself, and that lives on today. He brought such peace into my life, from the moment of conception on; it was as if he had a mission. Patrick and I now have a second child, Hannah, Tyler’s little sister. I promise, Tyler helped pick her out. In so many ways, he’s still with us. He’ll always be with us.”

As I stand in this circle and read the names on each of the benches that surround this angel, I wonder who each one of them are, what their stories are, because it’s our stories that connect us-not the how did-he-die stories-but the deeper question: how did he live?

This Amelia angel creates a circle of hope; the hope and belief that each child’s life, no matter how short of a time they spent on earth, is a gift. If you look closely at the angel’s right wing, you will see the word “hope.”

The golden moments in the stream of life rush past us

 and we see nothing but sand;

the angels come to visit us,

and we only know them when they are gone. 

                                                                                                          ~George Elliot

Christmas Box Angels are erected in more than 25 other communities around the world.  http://www.richardpaulevans.com/statue.html

If you’d like to view a photograph of this statue, it’s posted on my website at http://home.comcast.net/~cdodell/ (www.mothering-mother.com) on the Caregiving Tips page.

~Carol D. O’Dell

Author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir available on Amazon

www.mothering-mother.com

The Good Grief Club

by Monica Novak -

I didn’t see it coming.  None of us did.  How could we?  For Heidi, Tracy, Wendy, and me, it came with the words, “There’s no heartbeat.”  For Dawn, Beth, and Darlene, the crushing blow was, “There’s nothing more we can do.”

Miscarriage, stillbirth, infant death-these were things that happened to other people.  Until they happened to us.

Except for Beth and Heidi, none of us knew each other before our losses that began in 1994.  One by one we were led to a monthly support group for pregnancy and infant loss at a suburban Chicago hospital where my daughter Miranda had been stillborn.  Each of our losses had been different.  Delivered prematurely were Dawn’s triplets, Darlene’s twins, and Beth’s son, all six babies born too early at the time for medical technology to save them.  Born still were my daughter, Heidi’s daughter, and Tracy’s son.  Wendy had lost two babies to miscarriage when we met her.  Yet despite our differences, the seven of us discovered instant common bonds, understanding each other’s grief so deeply when those around us-our family, friends, neighbors, coworkers, and sometimes even medical caregivers-didn’t or couldn’t comprehend.

The biggest, and often most painful, misconception of others was that because none of our babies came home alive from the hospitals, we must not have been very attached to them, and therefore not grieving the same as if we had lost older children.  “You’re young, you’ll have more children.”  Yes, but I wanted THIS child.  “It wasn’t even a baby, it was a miscarriage.”  But I heard the heartbeat and saw the growing baby on the ultrasound screen-arms, legs, hands, feet, eyes, ears, nose, mouth-perfect in every way.  “God needed another angel in heaven.”  But I needed this baby here with us.  I needed to be her mother, to feed her with the milk that leaked from my breasts the day we buried her; to teach her big brother how to help me change her diapers; to walk her to school on her first day of kindergarten and walk her down the aisle on her wedding day; to cry tears of joy on the day she delivered her own baby, my grandchild.  I had a lifetime’s worth of hopes and dreams for this child, and now she’s gone and those dreams are shattered.  The hole in my heart will be with me always, and I don’t know if I’ll ever be happy again.

These were the feelings that the seven of us understood and shared.  Once a month, we came together with other parents and the compassionate nurse named Pat who facilitated our support group meetings, talking and listening, crying and laughing, and letting go of the pain little by little, finding strength and hope from each other, and especially from those who were ahead of us on this path, seemingly leading us out of the dark tunnel.

Several months into our journey, we realized that the second Thursday of every month, support group night, had become our lifeline.  And we didn’t want it to end at 9:00 pm.  A new monthly ritual began.  One by one, we would drive out of the dark parking lot and follow each other to the Omega restaurant, a favorite among the locals, offering everything under the sun from pancakes to pork roast and a bakery case that made you want to skip dinner and move right on to dessert.  Our habit became French toast.

As our French toast soaked up the syrup and whipped butter, we soaked up the stories from the past four weeks.  Dawn, who had lost triplets, found herself living in a neighborhood with families of triplets around every corner.  Her saving grace was a new friend she had met who had also lost a baby, and the two of them often took long walks, laughing that the other mothers with young children were probably whispering to each other that it was nice the women with the dead babies had found each other, but not to talk to them because it might be contagious. 

Heidi, Beth, and Darlene told us that between our monthly meetings, they had found another support group to attend because once a month wasn’t enough, earning them the nickname “support group groupies.”

Stories of basal body temperatures and ovulation predictor kits abounded, many of us on a quest to become pregnant again.  When Tracy announced her new pregnancy and their plans to sell their tiny house and move into a larger family home, she laughed that prospective buyers must be confused about the untouched nursery, still ready and waiting for the baby that never came home, when there was no sight of any children in the house.

Beth and Heidi shared the story of the night they sat in a car in the park at 1:00 in the morning sharing the contents of their babies’ keepsake boxes with each other, talking and crying, while a homemade lullaby tape played softly in the background.  Suddenly a bright light poured in through the window, and the police officer at the other end of it wanted to know what they were doing.  They laughed describing to us the look on his face when they told him about their dead babies, and that they were “sitting here having a moment.”

We always wondered each month whether Darlene would show up with a new job adventure to tell us about.  She was so obsessed with being around babies or baby things that she bounced from nanny job to daycare center to sales clerk at two different baby stores.

We cheered as Beth told us about her idea for Good Grief, a store just for the grieving, stocked with sympathy cards, birth and death announcements, artwork with serene scenes and comforting quotes or verses, angel statues, and inspiring music for memorial services.

We shared struggles, like Wendy’s blame and guilt over her miscarriages because she was a nurse and “should have known, should have been able to do something, should have been able to find a reason.”  We shared our hopes of new life growing inside us, the new fears that now came with pregnancy, and the conflicting emotions of joy for the new babies and continued grief for the lost babies.  We shared the excitement of signs we often received, that we believed were messages of love from our babies who were somehow still with us.

Our monthly meetings and restaurant rendezvous were not the only way our support group friendships blossomed and grew.  When Darlene miscarried baby Andrew at 13 weeks, Heidi and Beth were by her side as the chaplain baptized his tiny body cradled in a seashell.

After months of failed infertility treatments, when Dawn finally found herself pregnant and on bed rest, Beth and other friends brought meals, making sure Dawn didn’t starve to death.

When I gave birth to my daughter Casey, Beth and Heidi were among the friends and family who turned my hospital room into a block party.

Just one month later, on the second anniversary of Miranda’s stillbirth, I was surprised to find myself missing her so much.  Heidi and Beth had also just survived Brittany’s and Joshua’s second anniversaries, and were still feeling the aftershocks, too.  Heidi, Beth, and Wendy came over to my house that night, a bottle of wine and pie in hand.  As they took turns passing baby Casey around, we laughed a lot and cried a little and stayed up way past our bedtimes.

In the fall of 97, Heidi, Beth, Wendy, Darlene, and Pat, our support group facilitator, took a road trip to the National Share Conference in St. Louis.  They carried a banner, like at a rock concert, but instead of “We love you Bono!” the banner listed the names of their remembered babies.

In June of 98, Beth surprised us with a special birthday invitation.  Joshua, Brittany, and Miranda were all turning 3 (in heaven), the invitation said.  And she was hosting a celebration picnic at Josh’s cemetery.  The seven of us sat on blankets, eating and watching our kids shoot each other with water guns from behind headstones.  We laughed at Dawn’s story of once being so obsessed with her triplets’ gravesite that she had gotten on her hands and knees and trimmed every blade of grass with a pair of scissors until her hands were covered with blisters.

When Beth gave birth to her next baby, Heidi was her labor coach.  At Heidi’s next delivery, Beth was there to support her. 

When Wendy finally gave birth, Heidi and Beth were both by her side.  Since coming to the support group, Wendy had lost two more babies to miscarriage, a total now of four.  Ultrasounds had her in a near panic, remembering all those times when she was told her baby no longer had a heartbeat, so for months Heidi and Beth took turns driving Wendy to her doctor visits while the other babysat all of the kids.  Now calling themselves “the doulas,” Beth and Heidi had earned spots at Wendy’s blessed event.

In the middle of all of this, Heidi and Beth somehow found the time to create and publish Love Notes, a newsletter for our local support group community.

I think it was Heidi who first used the analogy that we started out like sorority sisters-the incoming freshman class-from scattered towns and various backgrounds, with different losses, all drawn together, bound by this one thing.  We became soul sisters.  We supported each other, yet didn’t realize we were doing it; it was simply a means of survival.  How we looked forward to those monthly meetings, counting down the days until we could all be together again to share our recent ups and downs.  Sometimes those nights at Omega went on forever.  It didn’t matter what we had to do the next day-this was our night and it was top priority. 

Although my six friends and I, now fondly referred to as The Good Grief Club, went in new directions and our time together has lessened, our heart connections remain strong. 

Many of us, led by Heidi and a group of dedicated parents, were involved in the building of an angel garden at the hospital where Miranda was born and where our friendships began. 

We often run into each other at events like memorial services and angel gardening days, or fundraisers like the annual luncheon or the Walk to Remember. 

Sometimes we pick up the phone to chat or e-mail each other for an impromptu rendezvous at the zoo or the pool; not often enough we meet for a girls’ night out, sharing our lives and retelling old stories.

We try to remember each other’s babies on anniversary days, sending cards or flowers, or making phone calls. 

And every year we try to schedule an annual family picnic.

I think my friends and I would agree that the deaths of our babies nearly destroyed us.  But together we grew stronger.  Together we found courage.  Together we had hope.  And as those once-gaping holes in our hearts began to fill up with love and happiness, we realized that if we could survive this, nothing in life could ever completely shake us from our foundations or take away all of our joy.

Together, in that knowing, we found peace.

Monica Novak is a bereaved mother and author of the highly-praised memoir, The Good Grief Club: A True Story About the Power of Friendship and French Toast.  She is the editor of Open to Hope’s Pregnancy and Infant Loss blog page www.opentohopepregnancyloss.com .  To learn more about her book and the subject of pregnancy and infant loss, please visit her website at www.thegoodgriefclub.com.

Article originally appeared in the Spring 2008 edition of We Need Not Walk Alone, the national magazine of The Compassionate Friends.  Reprinted with permission.

Myth Conceptions of Parental Grief

by David Hurley -

Over the past several years I have heard several people make ridiculous and shocking statements regarding parental grief. Most of the time they think they can help, and usually they are well meaning folks. They are comfortable in their ignorance of the realities associated with the loss of a child. Many of the statements have been heard from more than one source so they are common “knowledge.” Those inexperienced in this loss have accepted this conventional “wisdom.” They want to share it with everyone because it somehow seems logical.

I call these beliefs “mythconceptions.” They are myths in the truest sense. Passed along from many sources they become part of the fabric of grief to the uninitiated. They are almost misconceptions since people seem to internalize them before they pass them on.

I will share some mythconceptions here with a few tasteful (hopefully) comments:

“I didn’t want to say anything because I was afraid I would remind you of (fill in the name).” That’s really considerate of you. I almost forgot. Ten more minutes··· Yeah!!! Right!!! What ever makes anyone think we could ever forget? They have no idea how long it is before a day begins without the thought of a missing child. The thought is there quickly, but it NEVER goes away.

“I know just how you feel. My dog died last year.” Whatever you do, DO NOT SAY THE FIRST THING THAT COMES INTO YOUR MIND. Take a deep breath and explain that you too had dogs and cats (maybe even some fish and birds). Have buried several, and that it does not even come close in the level of pain or the lasting feeling of emptiness that accompanies the death of a child.

“Isn’t it time you just moved on?” Move on to where? We have moved. You should have seen us the first moment/hour/day/week/month/year. We are dealing with the grief, but it will never be gone completely. No one completely gets over the death of any loved one. The biggest problem a bereaved parent faces is that this is so backwards. We are supposed to bury our parents. We may bury siblings and many friends. Our children are supposed to bury us. Our brain was never prepared for this possibility.

“God only gives you what you can bear.” Maybe He has me confused with someone much stronger. In fact, if He gave this to me, I have a serious problem with Him. Help through this is welcome, the need for the help is not.

“At least you have other children so it won’t hurt as bad.” To this I want to respond: “Which of your children are you ready to sacrifice?” People who actually say this have missed the latest dose of oxygen needed for brain function. While we love each of our children differently, we love each of them unconditionally. They do not share our heart in pieces, each one fills our heart completely.

“At least they were older so you had enough time with them.” Enough time? How much is ‘enough’ time? As my children age I realize that I am in a different stage of being a parent, but a parent none the less. I will never have enough time with my children. They are busy (I guess I know where they learned that) and it is often difficult for us to find time to get together.

“At least he (or she) was just a baby so you did not get the chance to get attached to them.” Once again, this is an obvious lack of oxygen to the brain. We are attached to our children before they are even born. We plan, hope, prepare nurseries, and pick out names, dream of the future together. Early death crushes us beneath the weight of grief.

“At least you are young enough to have more children.” That classic causes as much hurt as any. When someone says that it would be appropriate to say: “You are also young enough, so give us one of yours and YOU have another one!” Even if we are young enough (I am not) we cannot replace the child that died. If they could be replaced so easily they would all be the same. I know from experience that each child in the house is different and fills the heart in a way no other can.

“At least they won’t grow up to be on drugs (or in other trouble.)” Well, that certainly makes me feel better. I am sure I would have been such a terrible parent and they would have faced such terrible outside influences that life would have been unbearable. Guess again. I would give any thing to have the opportunity to face all of those problems with my child. What we are talking about here is HOPE.

“At least they are in a better place.” That helped a lot. We try to provide the best place possible and make reservations for that better place for a much later date. The date for that reservation should be a long time after they bury us.

You may notice the last six mythconceptions begin with “At least.” I think it is safe to say that whenever someone begins a comment with “At least” you can expect that it will hurt more than help. “At least” minimizes the facts and puts you on the defensive if you allow it.

I am certain I have missed a few mythconceptions. If you happen to think of some I should include please email me at David.Hurley@gte.net. Awareness is the best defense against these comments. Education of the folks making these comments should be done with care and understanding because their ignorance is truly bliss. We can truly hope they are never “one of us.”

How to Support a Friend Who is Grieving a Miscarriage or Infant Death

By Chellie Bonebrake -

The death of an infant or a miscarriage is so sad. Many times it’s difficult to know what to say, how to say it, and of course you may be wondering what not to say. Often those worries keep people from reaching out to support friends and loved ones who are experiencing this loss. Receiving support and condolences is very important to the grief process. This article is written to assist you in supporting a grieving parent.

FIRST OF ALL, WHAT HELPS:

1. I’m sorry. This simple sentence conveys so much. It means you care, you acknowledge the loss, and you understand the person you care about is in pain.

2. What can I do to support you? Asking this question allows the grieving parent to ask specifically for what they need. They may need help making phone calls, or funeral arrangements. They may need help with childcare for other children. They may want you to remember their child’s birthday with them. By asking this question you offer your friendship and caring for the grieving parents’ specific needs.

3. Listen. Grieving parents need to talk about their feelings, their lost hopes and dreams. They need to express feelings of sadness, anger, frustration, and devastation. Being available to listen to those feelings and not trying to make the situation better or offering solutions is a true gift.

4. Send a sympathy gift. Receiving a sympathy gift that specifically honors the miscarriage or infant loss provides enfolding comfort to grieving parents. Knowing that someone cared enough to honor their grief with a gift validates this tragic loss and provides comfort in a time when comfort is difficult to find.

WHAT NOT TO SAY:

Sometimes in an effort to try and make someone feel better we may say things or want to say things that in this situation don’t help. If you read this and find you have already said some of these things, call or write your friend and apologize. Let your friend know your intention was to offer sympathy and support and if some of your comments were offensive you are sorry. This apology will go a long way in letting your grieving friend know you care.

1. “I know how you feel” or offer comparison stories. The death of a child is a unique experience for everyone and grieving people often bristle when someone utters this statement. The child this parent is grieving had unique hopes and dreams and characteristics and this parent was in their own unique circumstance. Each person’s grief is different.

2. “At least…” Any statements that have at least in them; at least she didn’t suffer, at least you didn’t have to go through labor… What these statements imply is: look on the bright side. To the grieving parent there is not a bright side of this situation. Only death and loss.

3. “Should” statements. You should go on a vacation, you should focus on the healthy children you have, you should move on. The grieving parent will need to decide how to manage the grief process and it at this time it is likely they are in survival mode and just trying to get through the day, the hour, the month. Thinking about what should be done only adds to the misery.

4. “You can have another baby.” Hopefully these grieving parents will have this opportunity when they are ready. However, right now they need to focus on their grief, their loss, and no child will replace this child who died.

Thanks for supporting a grieving friend. Caring friends are an essential part of the healing process and make a difficult time a little easier. If you have additional questions please feel free to write dearchellie@acknowledgements.net. We appreciate your business and the support you offer to those who are grieving.

www.acknowledgements.net

Article Source: http://EzineArticles.com/?expert=Chellie_Bonebrake

Helping a Friend Who Loses a Child

The Message
By Betsy Bottino Arenella -

My spiritual awakening began on December 11, 2004, with a life-altering phone call. I was walking down the front hall stairs in a bathrobe, my wet hair wrapped in a towel, when I saw my husband standing at the bottom. He was holding the telephone and looking up at me with a strange expression.

“Bad news,” my husband said. “Sophia passed away last night.” My legs buckled and I fell into a sitting position on the stairs.

Sophia was my best friend Melyné’s rosy-cheeked, active toddler. She had turned one the week before and, as far as any of us had known, she was perfectly healthy.

“What?” I heard myself say. “Are you sure? Are you sure?” I kept repeating this, positive that my husband somehow had misunderstood. How could Sophia have died? “I was just there the other day. What happened? Are you sure?”

“I’m sure, Honey,” he said. “I don’t know the details.”

I wandered around the house in a daze as my husband took care of our two young children; I had no idea what to do next. Should I drive over to Melyné’s and her husband Michael’s house? What about Melyné and Michael’s older daughter, Isabelle, age three? Was she with them? Did she know her sister had died? Did she understand?

If I made contact now, would I be intruding?

Finally, I couldn’t stand it anymore, and I dialed Melyné’s number.

“Oh, Betsy,” Melyné said, and we both started to cry. “They think it was SIDS…they think it was SIDS,” she repeated between sobs.

“What?!” I gasped. SIDS? Sudden Infant Death Syndrome? But that was only a risk for babies under age one. Sophia was a walking, talking, strong toddler, into everything, not a fragile little infant. How could this be?

The next day, I drove the five minutes to Melyné and Michael’s home. It was a bitterly cold December day, but the sun was shining and the sky was a clear, perfect blue, as if nothing had happened.
Melyné and Michael were home; Isabelle was at Melyné’s sister’s house. Melyné and I sat on the living room couch holding hands in silence, staring out the window at the ridiculously blue sky, tears streaming down our cheeks.

I kept thinking, where is Sophia? I wondered where her physical body was, but didn’t dare ask. But what about the essence of Sophia? Where there had been laughter and joy, I now sensed only a profound emptiness.

As a non-practicing Catholic, I always had approached the spiritual world with a certain degree of skepticism. But as a mother, the question struck me to the core: where had this beautiful child gone?

In the months after Sophia’s funeral, I continued to worry about Melyné and Michael. How could any parent survive such a soul-shattering loss?

It didn’t occur to me to worry about three-year-old Isabelle. She’s probably too young to understand, I told myself.

But during our daily conversations, as Melyné told me snippets of what her daughter had been saying and doing, I realized that this child was deeply grieving her sister’s death.

Isabelle, Melyné told me, had been gazing out her bedroom window at night asking for Sophia. Melyné and Michael had explained to Isabelle that Sophia’s body had stopped working and that her spirit had gone to Heaven. Crying, Isabelle said that in that case, she wanted to go to Heaven, too, so she and Sophia could be together again.

My heart broke for this little girl and her devastated family. At night I would awaken with a sick feeling in my stomach. Unable to go back to sleep, I would surf the Internet for hours until I was exhausted; then I would go back to bed, finally falling into a fitful sleep.

How to comfort this child? I felt helpless.

One day, standing in the living room pondering this question, I experienced the most extraordinary sensation. An intense wave of emotion rolled over me, accompanied by chills and goose bumps from head to toe. Thoughts, words and phrases poured into my head, accompanied by an overwhelming feeling of the purest, deepest love.

My eyes welled with tears, and my heart felt near to bursting. A complete story was in my mind:
Sophia visits Isabelle in a dream, alighting on her bed. Together, wings shimmering with the most beautiful colors of nature, the girls visit Heaven. Sophia explains that Isabelle needs to go back to earth.

But, she reassures her sister, although Isabelle can’t see her, Sophia still will be right there with her:
In the spring I’ll send a colorful butterfly to remind you of our wings. In summer I’ll whisper into a seashell and leave it on the beach where you can find it… the snowflakes falling gently on your cheeks in winter will be my kisses, and the two brightest stars in any night sky will be my eyes, shining with love for you.*

For days, I did nothing. Should I make Isabelle a book? Was I crazy to think that this story - or anything else - could comfort my friends?

But the words kept coming back to me, over and over, as I got my son ready for school, as I made dinner, as I tucked my children into bed. I’ll whisper into a seashell…

Finally I bought a blank book and started drawing with colored pencil, painstakingly filling in the sisters’ wings with multi-colored glitter glue and penciling the words at the bottom of each page. The snowflakes will be my kisses…As the glitter glue took hours to dry, and as I had my hands full with my young children, I was only able to complete about a page a day.

Tears rolled down my cheeks as I worked, but as the project progressed, a strange sense of peace came over me. The two brightest stars will be my eyes…When I woke up at night, instead of aimlessly surfing the Net with a knot in my stomach, I worked on the book.

After an hour or so, I would look at the completed, shimmering page, then go back to bed and fall into a deep sleep.

Despite the unexpected sense of calm Isabelle’s Dream had brought me, I was apprehensive about sharing it with Melyné and her family. Who was I to think that I had something to say that could comfort them?

For several months, I kept the book in a cupboard, taking it out daily to look at it.
One day Melyné mentioned that Isabelle again had been looking out her bedroom window at night and crying for Sophia. The next day, I brought Melyné the book, hidden in a white plastic grocery bag.

During the whole visit, I said nothing about the book, paralyzed with the fear that giving it to her might be the wrong thing to do. What if it upset her and her family even more?

Finally, as my daughter and I were leaving, I awkwardly handed Melyné the bag and stammered something about having made a book for Isabelle. The rest of the afternoon, as I picked my son up from preschool and ran errands around town with the kids, I wondered.

Was she reading it? What was she thinking? Had I done the right thing?

When I got home, I pressed the blinking message button on my answering machine and heard Melyné’s voice.

“Bets, I read the book this afternoon after you left. It is so beautiful.

“It’s just perfect,” she continued, her voice breaking. “The words - the pictures…Thank you so much.”

Later that week, Melyné and Michael told me that the book had affected their family deeply, and that it was the only one of the many books they had received after Sophia’s death that had given them a sense of hope. They listened in amazement as I explained how the story had come to me.

When Melyné read the book to Isabelle, she listened intently, then asked to read it two more times. At the end of the third reading, she said, “I want to go to sleep now, so I can have a dream.”

Melyné and Michael asked me to try to find a publisher so that Isabelle’s Dream could help other grieving children and families, and thus began a yearlong quest. I began submitting the manuscript to traditional publishers, sending out several proposals a week. Melyné and I reached out to anyone and everyone we could think of who might be able to help - ministers, rabbis, grief experts, friends - and their positive responses were overwhelming.

As Melyné and I pursued this project, she and her family continued on their grief journey, receiving incredible support from a national charitable organization for families who have lost children to Sudden Unexplained Death in Childhood (SUDC), which is similar to SIDS but affects children after their first birthdays. Created in 2001 by the CJ Foundation for SIDS, the SUDC Program provides information, support and advocacy to affected families.

By February of 2006, a year after we had started submitting manuscripts, I had racked up 35 rejections, and Melyné and I were growing despondent over our chances of publication. But then, that month, the founder of Quality of Life Publishing, which publishes gentle grief materials for hospices and families throughout North America, informed me she wanted to publish Isabelle’s Dream. Melyné and I were overjoyed.

In November 2007, Quality of Life published Isabelle’s Dream as an interactive, 60-page fiction story and activity book for grieving children ages three to 12. The December 2007 issue of Redbook featured the book, and that month Isabelle’s Dream topped Amazon’s “Hot New Releases” sales list in the category of nonfiction children’s books about death. Just a few months after its release, the book currently is in use at children’s hospitals and hospices in 28 states.

In Sophia’s memory, all of my royalties are going to the SUDC Program and will be earmarked for research into this mysterious and devastating killer. Melyné has thanked me over and over for what she calls “an incredible gift of hope and friendship.” But in the end, I believe this powerful message’s greatest gift of all has been given to me.

© Betsy Bottino Arenella 2007. For more information about Sophia’s life and about ISABELLE’S DREAM,” visit http://www.isabellesdream.org

Grieving Fathers & Parents Create Baby Loss Memorials

By Diana Gardner-Williams -

Diana Gardner-Williams is the mother of 3 year old son, 2 early pregnancy losses and 1 stillbirth. Diana is owner and founder of Just a Cloud Away Inc. www.justacloudaway.com support website providing specialty remembrance kits, memory garden tutorials, keepsake crafts and inspirational articles and ideas to help families grieving the loss of their baby.

Remembering a Child Who Lived a Short Life

By Jenny Hander -

One of the greatest tragedies in losing a baby is that you don’t get the chance to form enough memories to carry you through a lifetime of living without them. It isn’t that you forget to remember; it is that you don’t have many memories to recall.

Though I think of my sweet daughter every day, there are some days I feel as though I created her in my own mind. I ask myself, “Was she ever really here?” I know that she was, but she was here such a short time and so much time has now passed without her, that it sometimes seems like a dream.

But every now and then, something will happen to help reaffirm to me that her short, sweet little life was real. For instance, I recently heard someone say the name “Alyssa.” I thought to myself, “Oh, how I really love that name.” And then it hit me-I had a daughter with the same name. I have a daughter named Alysa.   And today, as I read of another family who recently lost a daughter at just 6 days old, I know for sure that the life of their daughter was real. And so I am reminded again that my daughter’s life, though tragically short, did really exist.

I love the moments when I am able to realize that Alysa is real. Though she is no longer with me in the physical form, she will always be with me spiritually. Alysa is still my daughter; she just lives someplace else. Alysa lives in a more wonderful home than I could have ever prepared for her here on this Earth. She is alive and well, shining down on us from Heaven.

Jenny is the author of A Place of Peace and holds a Bachelor of Science degree in chemical engineering from Texas A&M University. She is a proud wife and a full-time mother of three. She can be reached through her website, http://www.aplaceofpeace.net/

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