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The Compassionate Friends
Brisbane Newsletter
October November 2006

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Loss
By Mary Jane Warznak Lawrenceville, New Jersey

Shock……
Sudden, gut wrenching.
Full impact, disbelief, uncertainty.
Nothing is the same.

Denial……
Sleepwalking, haze, fog.
Numb, unfeeling.
Dreams of the past.

Anger……
“Why?” Unfair, rage, roller coaster.
Unfinished business.
Jealousy of others.

Depression……
Hurt, sadness, crying.
Pain, worry, woundedness.
Alone in my grief.

Acceptance……
Light, hope, memories.
Integration, reunion, peace.
Things are different, but it will be okay.

Bereavement Magazine September/October 1997

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 Empty Cradle, Broken Bed
Sexuality After the Loss of a Baby By Susan Erling Bereavement Magazine, Vol 2, No. 8 , October 1988 (adapted)

Sex, The word can hardly be spoken, read, or even thought about without evoking strong reactions. Sex is clearly an important aspect of a couple’s relationship. Aside from love, sex is sometimes the main bond holding two people together. But when their baby dies, the bond between a father and mother can also weaken and subsequently break. After the loss of a baby due to miscarriage, stillbirth or infant death, (or death of a child of any age) few aspects of a couple’s life remain unchanged, especially their sexuality.
For some bereaved couples, the act of making love becomes a form of comfort, a short relief from the pain of grief, or a bit of joy in an otherwise joyless existence. But for many others, resumption of sexual activity can produce feelings of anger, resentment and emotional upheaval.
Six years ago, my fourth child, a son named Jesse, was stillborn. For weeks following his death, I was too grief-stricken to function. The simple act of getting out of bed in the morning had become a supreme struggle. I couldn’t think, eat, sleep, relate to another living soul, or make a simple decision. I was paralysed by my grief.
Moreover, I was horrified when only four weeks after the birth/death, my husband gently turned to me in bed and asked if we could make love. I remember staring at him in disbelief and crying out in a voice that even I failed to recognize, “Why would you want to be where a dead baby has been?” needless to say, his ardor cooled instantly. At that point he was too stunned to respond. Instead he shut his eyes, exhaled deeply, and probably wished he could disappear without a trace.
A few weeks later we did make love, but it was different than before Jesse’s birth. The joy was missing; the melding of kindred sprits starkly absent. It was simply a physical release, not an act of love on my part. I was still hurting too deeply to give love away. All I wanted to do was envelop myself in my pain, wrap myself up in my grief, and remain removed from any pleasures life had to offer. I felt targeted, vulnerable, and oblivious to my husband’s need to be physically and spiritually close. I felt dead inside and I knew my “deadness” was harming my relationship with my husband, but I couldn’t stop it.
Nancy Berezin, author of “After a Loss in Pregnancy”, writes, “An area of special vulnerability is the couple’s sexuality. Because the relationship between sexual activity and procreation can hardly be avoided, the act itself becomes a repository of painful memories”.
In my work as the Executive Director of the Pregnancy and Infant Loss Centre in Minnesota, I have often heard how these “painful memories” can wreak havoc on a couple’s sexual life. They will temporarily abandon sexual relations, become hypersexual, pursue extramarital affairs, seek out homosexual relationships, or even submit grudgingly to each other.
These factors can contribute to a potentially hazardous situation for the couple. So can the loss of libido due to depression, anxiety, fatigue, emotional turmoil, fear of conception, pressure to conceive again, or feelings of inadequacy. Sex can become a chore, not a gift. Some parents associate the act of intercourse with the conception of the baby and the ultimate loss, which may make them feel guilty or angry. They may not enjoy sex because they’re simply too drained physically and emotionally, or because they’re thinking about the baby rather than themselves. Some couples either rush into sex to try to replace the dead baby, or they may reject lovemaking completely because it seems inappropriate after such a tragedy.
Berezin says, “Sex is an all-encompassing sharing of love. It is touching and caring, and a very beautiful thing. And what better time than when you are in pain and needing help should a beautiful thing take place?”
But how do we recapture the innocent beauty of love and life amid such pain? Some experts suggest proceeding slowly, talking about your concerns, fears and reluctance with your partner. Try to reassure each other as best you can that the situation although trying, is only temporary and won’t last forever. Kissing, holding, and caressing each other without the ultimate goal of a consummation, sometimes alleviates the pressure, paving a smoother path for the next sexual encounter.
However, if several months have passed and one or both partners continues to feel estranged or unable to function sexually, the couple should seek professional help. Sexual problems are a leading cause of divorce among bereaved couples and should be dealt with promptly, before irreparable damage is done to the relationship.
Fortunately, but not with ease, Rich and I were able to recapture the beautiful sexuality we shared before the still-birth. We talked, we cried, we touched, we tried desperately to understand each other. Each encounter was an experience; sometimes subdued, sometimes pleasant, sometimes downright humourous. We felt like novices at times, rediscovering each other, relearning how to give and receive pleasure despite our grief. Within six months we reached a level of success where sex was no longer a task, but a joy. We felt reborn in many ways. Jesse’s memory was no longer razor sharp and cutting. Bittersweet: that’s how we felt.
Harriet Sarnoff Schiff, author of “The Bereaved Parent”, writes, “there is absolutely no point in denying yourself some good things in life that can still be enjoyed as a couple—things like sex and socializing. Your enjoyment of these can only ease the pain, and this is highly desirable”.
Six years later, my husband and I are pleased to have beaten the staggering divorce statistics associated with parental bereavement … some say nearly 80%. Subsequent to Jesse’s birth, we experienced a high-risk, multiple pregnancy which produced Luke and Rachel, now five years old. Along with their siblings, Amber 13; Jake 11 and Noel 10, they do their best to make sure we have very little time to pursue our sexual life. But somehow we manage. I think someday I’ll have to write an article about sexuality after children. I think I’ll call it “Full House/Empty Bed”.


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Dear Matthew—23/7/76 to 14/4/04
Lovingly submitted by Matthew’s Mum, Dzintra Hallam, TCF Qld
Dzintra would like to send her caring thoughts to all bereaved parents, grandparents and siblings, we will miss our children forever.

I’m doing my appointment diary, and am going through the 2004 diary, year of death. Came across an entry which had—Matty at death weighed 67 kgs and was 5 feet 6 ½ inches tall.
I am missing you today. What a gap, what a void, what a big cavern. A hole that never can and will never be filled. A longing, a desire. Feelings are bitter-sweet, emotions all tangled up. Like the waves at the beach, going in, going out, never still and never to be stilled. When will there ever be calm and normalcy. It’s a mystery that never ever will nor can be worked out as I am human, I’m alive. My feelings are for the living. They know I have lost my son, Matthew. You try to forget but it’s in the waking moments of my day that my heart aches, my soul craves for the living Matthew.
The bond of a mother and child. Talking, eating, laughing, loving and being annoyed sometimes. But always loving, unconditional love. I love you because you are my child, you were my child. Memories of you undimmed by the years of separation from you. My beautiful, soft spoken Matthew. Rest my child.
I love you, Mum

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Memories
By Jennifer Graham—Vista, California Bereavement Magazine September/October 1995

They say memories are golden,
Well maybe that is true;
But we never wanted memories,
We only wanted you.

A million times we’ve needed you,
A million times we’ve cried.
If love alone could have saved you,
You never would have died.

In life we loved you dearly,
In death we love you still.
In our hearts you hold a special place
No one else could ever fill.

If tears could build a staircase,
And heartache build a lane,
We’d walk the path to Heaven
And bring you back again.

Our family chain is broken
And nothing seems the same,
But as God calls us one by one,
The chain will link again.

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It Helps to Talk
By Pam Buckley “Compassion” TCF Spring Edition 2004, UK

You talk to me about your child,
What they’ve been up to,
I listen to your chatter,
Keep silent for a while,
But I really can’t keep quiet any longer.
I want to share with you what my child did
Not pretend he never existed,
It helps to talk.

It may be a very similar thing
But my recollections are in the past tense
You see my child died.
I want to tell you that HE did that,
How readily my words come.
I can feel your uneasiness,
You don’t know how to react.
Why should it make a difference? - but it does.
You feel awkward,
I know what you’re thinking—why is she talking to me like this,
After all her son is dead
He is no more, but
It won’t stop me sharing him with you.
Be accepting that I am still a Mum,
He lived and did exactly the same things,
But they are now only memories.
Don’t be afraid.
It helps to talk.

Let me share him with you,
If you do, then it keeps my son’s memory just as alive as yours.

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Ryan, My Precious Ryan
By Cheryl H Pichon—Slidell, Louisiana Bereavement Magazine, September 1993
A Grandmother’s Story

“Cerebral Palsy”. Those two words cauterized their way into my brain from the moment of my precious grandson’s birth. The next desperately frightening words were, “your grandson is a very sick little boy. It was necessary to place him on a respirator.”
As my son emerged from the delivery room, ashen-faced with clenched knuckles of white-hot determined strength, we knew the nightmare was no longer a fear; it had stolen for itself the dignity of reality.
Instead of the anticipated joy, there was the horror of needles and tubes and the hissing of machines. A baby boy, a part of each of us, lay naked and unnaturally still as this monster disease gnawed off a hunk of life from each of us who loved him.
We gazed upon him in utter disbelief and helplessness. We could not even hold him to let him know that his family was there, and that he was so very loved.
New words came; “The respirator has blown two holes in his lungs and has cut off oxygen to his brain. He will have to be airlifted to another hospital.”
Now, each second took more of his brain cells, including more of his abilities, talents and potential. We would later painfully come to realize that he would be unable to hold up his head, sit, crawl, walk, speak or feed himself He would be forever unable to grasp an object, be potty-trained or even blow his own nose. He could never protect or defend himself; bathe himself or go swimming; read or write; blow bubbles; play with toys or play ball with friends. He would never have other children to play with.
A staff member of the hospital where he had been transferred called to say that his kidneys and liver were failing, and we needed to go there and say our goodbyes. The doctors estimated that he had approximately twelve hours left.
As we entered the “chamber” we did so with tissues and our fists shoved into our mouths to stifle the screams of anguish. (You are asked to consider the other families who are also having a nightmare.)
At this point, after all of the begging and pleading with God, after trying to bargain to take Ryan's place, there was nothing left but to plead for God to take him swiftly and end his misery. His little body was so hot that our lips felt uncomfortable when we kissed him.
We returned my daughter-in-law to her hospital room and waited for the call telling us Ryan was finally free. But the call never came. Finally, at 4:00am, I called them and was told he seemed to be stabilising! O God, no! After all of the damage to his brain? For his sake, we didn’t want this for him!
He did live though, and when he was two months old, he was released from the hospital, still on oxygen. He was several months old before we could see his entire little face, free of all apparatus. While he was still a baby, it was easy to deny what we had been told, because he didn’t look like he had cerebral palsy.
Because his lungs were inadequate and damaged, even a cold devastated him. Daily and frequently he would start to strangle on mucus, but the threat of losing him now was unbearable to me since I had known his warmth and the absolute sweetness of his smile. His amazing efforts to smile through his suffering could penetrate the hardest of hearts. His innocence overwhelmed me. We did not hear him laugh aloud until he was nine months old.
By his first birthday, he could no longer have his bottle because his condition was causing him to aspirate the formula into his lungs. His repeated bouts of pneumonia required surgery that put a tube directly into his stomach. There was a plastic-valve closure at the opening, and feeding him meant opening the valve, attaching another tube and slowly releasing the formula/medication mixture into his stomach.
Because my son’s medical insurance benefits were decreasing, the doctors scheduled four operations on Ryan in one morning. One of the operations required that both of his legs be spread apart as far as possible with a cast on each leg and a wooden bar that separated them for six weeks!
My love for him was so consuming that my fear of losing him was constant, but never did I fully accept the reality of it. The only time I could have willingly let him go was when he was in pain. But it didn’t happen that way.
He was taken when I was not expecting it—when he had been ill but was better. He was silently taken away during the night as he slept. The next morning when I got that nightmare-turned-reality call, all I had left to hold was his ice-cold little body. The medical examiner said his little heart just couldn’t take any more, but he had survived so much that I still reject the reality that I don’t have him any longer.
After they took his body away, I came home and wrote a message to him—a message from my very soul to try to express what those of us who love him felt.
I want so desperately to believe what I wrote is real for him, but in my nightmares I mostly recall him as solemn with his eyes closed. So, again, I beg and plead with God to allow me a glimpse of Ryan as now happy and healthy. My prayers haven’t been answered yet—unless the answer is “No”.
I ask anyone who may understand my pain and torment to please help me pray for my request to be assured that Ryan is now fine so that I may be set free and find peace—if—that’s possible. I have been unable to work since Ryan died, and my financial resources are nearly exhausted. I feel lost and without direction.
Telling this story represents a massive effort for me, but Ryan was worth the effort! Others who may be experiencing the same pain and loss are also worth the effort. I do know, I do understand, and I’m so very sorry.
Oh, yes, this past Christmas, Ryan got his grave marker. It’s beautiful … as grave markers go. Ryan, my precious Ryan...

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SHARING

One evening at the kitchen table, my four-year-old daughter Barbara watched with interest as I was preparing to mail out some letters concerning TCF. She showed a keen interest in the logo sticker I attached to the corner of a large brown envelope. Her big blue eyes took on a seriousness I had never seen before as she asked, “Mom, why is the kid so far away from the hands?” I replied as honestly as I could. “Because the kid has died and the hands are the Mommy’s or the Daddy’s reaching for the child.”

She turned those blue eyes to meet mine and said, “I think you’re wrong, Mom. I think the hands are letting him go.”

How remarkably perceptive children are. I sat there astonished by what she had suggested, then I grabbed my pen to write down what she had said. This was, I thought, a sage piece of wisdom from someone who believed in Santa, the Tooth Fairy, and wishing on stars. Barbara, in her innocent way, made me see that I am still reaching. It has been two years since BJ was stillborn, but I continue to reach for something. Just what that something is, I don’t know, but I’ll know what it is when I find it. Perhaps then a part of me can let go. Do children sense that death is a process of letting go; that letting go is okay for those whose time it is to let go? I don’t have an answer, but maybe my blue-eyed blonde-haired Barbara does. Maybe, just maybe, all children do.

Edith Fraser, TCF, Winnipeg, Canada, Reprinted from Mo-KAN Region TCF, Atlanta Online, 13 May 2003

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I Touched Your Face Today
Author Unknown

Today I touched your face again and watched you for a while,
I talked of things deep in my heart and wished I could make you smile,
I rubbed your heart and told you, I’m proud of you my son,
For all the little things you did and the way you did each one.
You showed such courage daily and you taught me how to live,
To make each moment count in life and to give what I can give.
Did I tell you ‘You’re my hero’ when I saw you yesterday?
Or did it slip my mind as I put you away?
I know your time on earth was short, but it’s how you lived each day,
You made the most of what you had and always found a way.
To touch the hearts around you, to love while you may,
I wish with all my heart right now, the face I touched today,
Wasn’t made of paper or neatly placed away.
But I will put you on the shelf again for all the world to see
I’ll talk to you tomorrow just like I do each day,
And I’ll tell you ‘You’re my hero’ as I gently walk away.

To Dan for your 37th birthday on the 9th October.
With all our love, Mum, Nico & Bryn XXX
Lovingly submitted by Bev Bosma, TCF Qld in memory of her son, Daniel 9.10.69 ~ 10.12.96

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A butterfly from heaven

On the way home from a day out with my friend Liz, just by chance she had turned onto a road that would take us by the churchyard where my son Jamie is buried. So I asked her if she would mind taking me there. When we arrived at Jamie’s grave there was a butterfly on one of the flowers. It had its wings closed and stayed there when I stroked it.
My friend, who had her camera in the car, said she would take a photo of the butterfly. When she bent down to take the photo, the butterfly very slowly began to open its wings and stayed like this all the time Liz was taking the photos. She managed to take several.
When she went back to the car with the camera, the butterfly very slowly began to close its wings again, and was still on the flower when we left.
I had been going through an extremely hard time with missing Jamie so much, that my friend believes the butterfly was sent to help me to give me peace of mind, and that Jamie is still with me. So maybe the butterfly was sent from heaven. I like to think so.

By Carol Burns, Devon “Compassion”, The Quarterly Journal of TCF, Spring Edition 2004, UK

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Family Photos after the death of one of our children: (adapted) -
Terry Kimble mattchewsmom80@aol.com—Atlanta Online May 2003

Matt was killed in April of 2000. Our last family photo was probably about 4 years before that, (time just got away from us, we always assumed we’d have the kids forever). Anyway I could not take a family photo without Matt but my younger son is graduating and going to the Marines this summer, my step daughter will be a Senior in high school and not spending as much time with us so we decided last summer that we had to do it. The only way I was able to take Matt with us. We went to Sears and I took his 8x10 graduation photo with us and I held it in the family photo and my son held it in the photo of just the kids. I’m glad we did it. I hate not having Matt alive in the photo but we are still a family and I needed to have the family photo for the rest of the family but it took 2 1/2 years to do it.

From the editor:
This piece gained my attention as I was preparing this month’s newsletter. After our son died in 1991 our local church was organizing family photos the next year. I also felt I didn’t want a family photo without our deceased son and so we came up with the same solution and that was to take a photo along of our son and have one of us hold it in the new family photo. Do any of our members have a story to tell about their experiences associated with taking a new family photo after their child has died? We would love to publish it with your permission.

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Sudden Adult Death Syndrome—SADS
June Nicholls of Sutton Coldfield has written about what happened to her grandson Dale.

I was led to believe that my 16-year-old grandson Dale had died from SADS, but having sent for his death certificate to take to the SADS Conference in the hope of seeking some comfort and answers, I discovered to my horror that it was not SADS. I made an appointment to see my doctor, who sent for the coroner’s report to explain what was in it. He said that they felt that Dale had cut off his airway whilst he was asleep and that small haemorrhages had been found in his lungs. His blood contained 100mg of alcohol, which is not a great deal, but which was apparently enough to put him into a deep sleep where he may have been lying in an awkward position that cut off his airway.
My Beautiful Dale

There’s a gift in my life
So precious and rare,
It’s a gift a grandmother
And grandson share.
We had that gift, Dale,
You and I,
Then the angels took you
to Heaven in the sky,
Our gift I will treasure
forever In my heart.
One day I will join you
and we will never be apart.
Together again
And I will never
Have to suffer
This Pain.

Your lost and empty Nanny June
Dale so deeply loved and longed for XX

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Can I Still Grieve?
-Author Unknown
Submitted by Elaine Roebuck in loving memory of her daughter Katie Alexis Roebuck 12.6.71 ~ 6.10.96

How much time am I allowed, are there rules I must go by?
Does anyone ever keep track of the thousand tears I cry?

Will I someday know the answers, have it figured out in my head?
Just how long am I supposed to grieve, now that my child is dead?

People think they know the answers, to the questions I may ask.
But only if you've lost a child, can you understand this task.

I'm reading all the books I can, to know what grief's about.
But do these rules apply to all? It's hard to figure out.

While driving home from work tonight, I feel I'm sinking low.
I try to put grief off my mind, but where can I now go?

You think grief has a pattern, with a beginning and an end?
But I'm grieving for a lifetime, can you understand my friend?

So when I really need you, will you stay or will you leave?
What will be your answer, when I ask "Can I still grieve?"

10 years, my precious Katie …. And I’m still ‘biding time’ … Loving you always, Mum xxx
Submitted by Elaine Roebuck in loving memory of her daughter Katie Alexis Roebuck 12.6.71 ~ 6.10.96

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