Our beautiful daughter Emersyn Paige passed away from SMA Type 1 on April 7th,2009 at the age of 7 months old. This blog is dedicated to her life, legacy and spirit and our journey as a family through grief.





















































Tuesday, September 22, 2009

You Can Help a Grieving Heart by Alice J. Wisler and Fran Dorf~ Thank-you Auntie Becky for sending this!

Oh, we talk about the best cold medications and if cherry cough syrup tastes better to kids than orange. We can recommend preschools and sneakers. But the hardest part of parenting is the least often discussed. The roughest aspect of being a parent is losing a child.Then we clam up. We don't want to hear. We are threatened. If her child died, mine could, too. What can we do when parenting goes beyond the normal expectations? "What do I say?" friends ask me with a look of agony in their eyes. "I feel so helpless.I can't empathize, I haven't had a child die."You can help. You don't have to stand there with a blank stare or excuse yourself from the conversation. You can be informed so that you will be able to reach out to a friend who has lost a child."Jump into the midst of things and do something," says Ronald Knapp author of the book, "Beyond Endurance: When A Child Dies." Traditionally there are the sympathy cards and hot casseroles brought over to the bereaved parents home. But it doesn't end there. That is only the beginning of reaching out to your friend or relative who has recently experienced the death of a child at any age.Here are 15 tips you can learn to make you an effective and compassionate friend to your friend in pain:
1) Listen. When you ask your friend, "How are you doing today?" wait to hear the answer.
2) Cry with her. She may cry also, but your tears don't make her cry. She cries when no one else is around and within her heart are the daily tears no one sees.
3) Don't use cliches. Avoid lines like, "It will get better." "Be grateful you have other children." "You're young, you can have another baby." "He was sick and it is good he is no longer suffering." There will never be a phrase invented that makes it all right that a child died.
4) Help with the care of the surviving children. Offer to take them to the park, your house for a meal, to church. Say "May I please take Billy to the park today? Is four okay with you?" Don't give the line, "If you need me, call me." Your bereaved friend may not feel comfortable with asking for help.
5) Say your friend's child's name. Even if she cries, these are tears that heal. Acknowledging that the child lived and has not been forgotten is a wonderful balm to a broken heart.
6) Give to the memorial fund. Find out what it is and give, today, next year and the next.
7) Some mothers start to collect items that bring comfort after a child dies; find out what it is your friend is collecting and buy one for her. My son liked watermelons and we have many stories of watermelons and him. Therefore my house now has assorted watermelon mementos -- a tea pot, kitchen towel and soap dispenser. Many mothers find solace in rainbows, butterflies and angels.
8) Send a card (I'm thinking of you is fine) but stay away from sappy sympathy ones.
9) Go to the grave. Take flowers, a balloon or a toy. How honored your friend will be to see what you have left there the next time she visits the cemetery.
10) Don't use religion as a 'brush away' for pain. Stay clear of words that don't help like, "It was God's will."
11) Don't judge her. You don't know what she is going through each day, you can not know of the intense pain unless you have had a child die.
12) Stay in touch. Call to hear how she is coping. Suggest getting together, but if she isn't up for it, give her space.
13) Read a book on grief, focusing on the parts that give you ideas on how to be a source of comfort for your bereaved friend.
14) Know she has a hole in her heart, a missing piece due to the death of her child. Holes like these never heal so accept this truth and don't expect her to 'get over' this loss.
15) Remember that with the death of her child, a part of her died -- old beliefs, ideals, etc. Her life has been forever changed. Let her know your love for her as well as God's love for her is still the same.
Even as you participate in the suggestions above, you will still feel uncomfortable. It has been three years since the death of my four year-old, Daniel, and even now when I meet a newly-bereaved mother, I am uncomfortable. Talking of the untimely death of a child is never easy for anyone. However, avoiding reality does not bring healing. You will provide many gifts of comfort along the way when you actively decide to help your grieving friend. When my friends and family acknowledge all four or my children, the three on this earth and the one in Heaven, I am honored. Each time it is as though a ray of warm sunlight has touched my soul.

How to Comfort a Bereaved Friend or Relative Well-Meaning People Often Say The Wrong Thing...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. Having received my share of insensitive, even hurtful, comments after my son, Michael, died 13 years ago, I certainly understand. Even people with good intentions often say and do the wrong thing. 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 DOIve 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. But ignoring the elephant in the room just makes it bigger. Advice-givers. People often give advice, such as, “Start dating again”... “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 would take my wise counsel, you’d feel better.” I remember that people advised me to take a sedative, but somehow I knew that 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, such as, “God must have wanted him... he’s in a better place,” 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 he feels. Pseudo-empathizers. It’s particularly distressing for those experiencing “high grief” -- for example, from the loss of a child -- to hear, “I know just how you feel.” If you haven’t experienced the same loss, you have no idea how a person feels -- 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 their own time and ways. Don’t say, “Everything happens for a reason”... “We must learn to appreciate our lives”... or “Life is short.” Abandoners. Whatever the conscious or unconscious rationalizations -- such as 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 he’s sitting quietly, sit quietly beside him. If he’s using humor to cope, laugh a little. Let the grieving person tell his/her story in as much detail as he chooses to, even if he repeats it and it’s hard to hear. It helps the bereaved to tell and retell the story. If you’re not sure how to respond, try simply, “I’m so sorry” or even, “I don’t know what to say.”Read a book on grief. 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. Or search on-line for information about grief under "grief" or "bereavement."Acknowledge the deceased person. Tell a wonderful anecdote about him. Even now, I am grateful when someone mentions my son, Michael. Just saying his name aloud brings him back into the world. Contact the bereaved on significant days -- birthdays, death days, anniversaries. These are difficult, especially “firsts.” Don’t avoid, ignore or forget them. Offer practical and specific support. 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.” Decide what you can do, and then do it. Stay in touch. Remember that when the formal mourning period is over and the last casserole is gone, the bereaved is still grieving. Continue to call and get together. 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. 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.In memory of my son, I eventually wrote a novel. Also, my husband and I established an educational program for toddlers with special needs. But reinvestment can be 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. Psychiatrist Elisabeth Kübler-Ross’s classic five stages of grief -- denial, anger, bargaining, depression, 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.”Grief support takes work, stamina and commitment. Be present. Be humble. Be patient. Observe. Reflect. Allow silence. Don’t judge. Accept. Listen.

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