How things have changed… yet they have remained the same.

This week I had to make a decision. It felt a bit difficult. Our post box came up for renewal and I realized that it was time to say we should close the mailbox. The last letter we got through there was probably last year’s bill. It was a tough decision because 18 years ago, I went down to our local post shop and opened our box and they handed me the keys and it felt like we had really started something official. We had a post box! Over the years, we have had all kinds of mail. Way back in the early days people wrote their stories on paper, by hand put it in an envelope and it arrived with us and we typed it into the new computer we had gratefully received with some funding and each quarter we packaged up several hundred copies and I posted them off. Lots of paper and lots of postage and printing costs which we covered through generous donations and the occasional grant. There always seemed to be just enough to do what we needed and we were so grateful. We learnt how to build websites way back when people hardly knew what one was. It felt good though to be able to be a place where “for people to mourn & meet others who have been burned by that black sun”. So much of our support was through our magazine. There was no other real way for people to hear and be heard and copies of Hearts & Wings were treasured and read over and over and it felt like someone understood even if we could never truly meet these people in person. We did run some coffee mornings for few years but even here in Auckland it was difficult to have enough people in one place who needed the support at the same time. We had some crazy mornings, those who might remember! People driving with little ones from Ararimu in the south of Auckland  all the way to Orewa during rush hour traffic because it was that special to get together for a morning coffee with other “angel friends”. A few years ago, our Facebook group kicked off and this has become the meeting place. There is no more waiting for months to hear from someone by post or having to write your story down in full for a special magazine. Any day you feel something you can share that with others, you can tell pieces of your story slowly, bit by bit. You can just read the others posts, waiting for the time to be right for you to share something. There’s still several hundred people out there, meeting others, finding hope and comfort, having a place to remember their twins when it seems there’s nowhere else. Everyday I still read your posts and I love how supportive you all are of each other. That really hasn’t changed has it? Having a post box doesn’t make us, does it? I am now thinking that having a bank account isn’t important either. It all costs nothing these days. No more paper and postage or web hosting costs or anything really and I am not sure we really need that official charitable status anymore. Nothing has changed, but everything has…

With or Without Her ~a memoir of losing & being a twin by Dorothy Foltz-Gray

Just before I went away on holiday a book arrived in the post. It was published in late 2012 and I was asked to review it for our website. With the busy Christmas season ahead (and here in the southern hemisphere that means end of school year events along with packing and planning the summer holiday!) I popped it away in my “things to read” pile in my suitcase. There was also a feeling of wanting to savour the story, not to read it in haste but also, as with all books on the loss of a twin I come across, a cautiousness about just where it might take me…

With all the rush and hustle behind us, on a quiet summer holiday afternoon, I picked it up and started to read. Dorothy Foltz-Gray began writing eighteen years after her twin sister was murdered and it was thirteen years in the making. I read all of it that afternoon because I just couldn’t put it down.

In With or Without Her, Dorothy shares the inspiring story of the lives she and Deane built together, and the struggle to rebuild her life without Deane. She tells the story with the tenderness of a poet and the insight of a journalist.

Two humans born from the same fertilised egg, alike in every way: identical twins are a fascination. Two people bound to one another by appearance and matching DNA. The relationship is deep, powerful and complex.

Dorothy and her sister Deane were identical twins and soul mates. Though they struggled to be both best friends and separate individuals, they were intimate, bonded for 32 years by their similarities.

Loss of a parent, a sibling or a child is always difficult, but with Deane’s murder, Dorothy lost part of herself, her other half. She found herself struggling to live without the person who had always been her second self.

I enjoyed the way Dorothy weaved her way through her life backwards and forwards from her childhood, back to the dark days as her sister died, backwards and forwards and then onwards into the future where she discovers herself and her twin again.

I know my friends who have lost their twin will find this book moving and in it you will read your own story too. Thank you Dorothy for reaching inside yourself and writing this despite the pain of having to go back into the traumatic past to show us the way to outlast grief, to wade beyond it to be still a twin, with or without her.

Beginning with the End ~a memoir of twin loss & healing by Mary R. Morgan

It is always exciting to hear when someone writes a new book about their experience of the loss of a twin. Mary R. Morgan’s book came out in May this year and when my copy arrived in my mailbox I could not wait to find the time and space to settle down and read her account of the loss of her twin brother Michael. Michael had mysteriously disappeared off the coast of southern  New Guinea some 50 years earlier and Mary has written the story of her journey through this loss in the subsequent years. I knew it would be the kind of book that once you opened it, you would not want to put it down again until the very last page. I was not wrong! I started reading one afternoon, I was early to pick up the kids from school and I got a good way into it but I knew I should have waited until I had more time. The next time I opened it up I read until the end.

This is a story of loss, the long denial of the loss of a twin, the acknowledgement of his death, the allowing of him to be free, and then finally, the discovery that he had always been part of her journey in the end. It is an honest account of what this twinship and loss had meant in Mary’s life and how it had played out throughout it in the relationships around her. It is the story of the slow process of putting back together, of re-discovery and of building a new relationship with a twin brother.

Mary writes: “My own bereavement was unnecessarily long and protracted. Especially as a twin, I found no healing in separation. In making new connection, we break the isolation. Sharing our experiences with others, we form community. Our arms make a circle that can hold the loss, allowing it to be met safely, allowing for understanding, for listening, for being heard, for being present. In connection, we can bear witness to the necessary process of falling apart and the small steps of coming back together into new form and into new life. By writing and sharing this book, I take my place and invite you into a larger circle of healing connection.”

I believe this book will help those who have experienced the loss of their twin most especially but it is for anyone who has been shattered by deep personal grief, those for whom their experience has been unacknowledged or misunderstood and it will help in the journey of putting oneself back together.

 

MARY R. MORGAN is a licensed psychotherapist specialising in working with twinless twins. She lectures on the subject of twin loss and has led a bereavement group for twins whose twin died in the 9/11 World trade Center disaster. She is presently on sabbatical writing a new book for grief counselors, which explores the unique treatment issues facing grieving twins. Ms Morgan is also the executive producer of two forthcoming documentaries on the myth of gene and the risks of genetic engineering. She is married and lives in New York State. She has three children and seven grandchildren. For more information visit:

www.beginningwiththeend.com

From a Clear Blue Sky

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I first read an account of the loss of Timothy’s twin brother Nicholas many years back when I first started this group. It came in an envelope sent to me full of copies of old newspaper articles and other interesting twin loss information that had been collected together. Timothy had done an interview for a newspaper in England back in 1989 to coincide with the first meeting of a group of surviving twins which would become The Lone Twin Network which still exists today. I was fascinated and touched by his story of losing his twin. He and a family group were on board the Shadow V which was blown up by the IRA in August of 1979 killing his grandfather Lord Mountbatten, his grandmother, a young boy helping on the boat that day and significantly, his own twin Nicholas. His parents and himself were left badly injured. This was the first account I had read of someone who had lost his twin after spending their early years together. It gave me a beautiful picture of their life together as twins before that fateful day. Until then I only had known the experience of loss around the time of birth. In this book, Timothy himself had a similar experience when he met another lone twin for the first time (who in the end became his best and closest friend). David had lost his twin a little later in life and shared, to Timothy’s fascination, about how their lives had gone on to become more separate due to their changing lives and that intrigued Timothy who had only known twinhood to be two lives lived in parallel. He had never spent more than a few days apart from Nicky in his whole life. He wondered what would have it been like had they been able to carry on into this phase of life until them.The article was written some 10 years after the tragedy and as I read the book, it was clearly only the early days of recovering from this loss.

The setting was in Ireland, a place that the family loved and enjoyed for holidays year after year but after the bombing, most of the family found the idea of returning so very hard. Timothy on the other hand felt that one day, he would have to come back and find peace and healing there and so this book traces the history leading to the event and then the 25 years following when Timothy began to piece his life together without his twin Nicholas. Timothy had been badly injured and was not aware of Nicholas’s death until three days after the accident. He had not been able to attend the funeral in England and he had never said goodbye to Nicky in the way he would have liked. To go back to Ireland and explore the places and the people and relive in a way such a painful event, brought amazing healing to Timothy.

I found this book to be one of the most powerful and touching twin loss accounts I have ever read and would be helpful to anyone on a grief journey to understand how in the most tragic loss one can discover healing and how one man managed this.

Timothy writes: I finished my paperwork and walked into the bathroom. I was squeezing toothpaste onto my brush when I looked into the mirror and saw my face for the first time since seeing Nicky’s in the photographs. We were still identical and I broke down utterly. It was exactly the release I needed.
If my own children ever suffer bereavement when still young, I will urge them, once they are ready, actively to mourn. If it is what they want, I will encourage them to grapple with trauma in close up and slow motion and from every angle they desire until the box of unresolved grief unlocks for them. This is no prescription for good recovery and for some people it might be the opposite of what they need. But for me it provided more than therapy, it was liberation.

For me, this book was gripping from the very first pages and I was so glad to have found a quiet weekend to read uninterrupted.

how to buy

Beyond Words -grieving when your child has died.

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The death of a child is a heartfelt experience like no other.
It is a deep grief experience that goes beyond words.

The loss affects bereaved parents emotionally, physically, mentally, spiritually and socially. It makes more demands on them than most others ever realise.

Many bereaved parents say that the only people who can ever genuinely begin to understand what it’s like for them are other bereaved parents. Hearing from others who have ‘been there’ can make all the difference. For this reason, Beyond Words is a handbook that features the honest words, perspectives and suggestions of many bereaved parents. It also offers useful information about managing grief, support options and ideas that may be helpful on the grief journey.

It is comforting, encouraging, informative and practical.

It will also provide understanding and insights to professionals and others seeking to effectively support bereaved parents.
Click here to buy

What’s Happened to Baby? By SIDS (Wgtn), Sands (Wgtn), and skylight

This is an inviting, sensitively written and colourfully illustrated picture book for children 3–7 years old, who have had a baby die in their family/whanāu. The text has been carefully designed to fit a wide range of bereavement situations, including miscarriage, stillbirth, cot death and accidental or natural death of an infant or toddler. It has been designed with the whole family/whanāu in mind and provides a helpful opportunity for parents and caregivers to talk with a young child about this difficult loss. It also features useful notes and information for adults at the back to assist them in supporting their bereaved child. Ali Teo’s illustrations and the text combine very effectively to reflect the multicultural nature of the New Zealand community today.

You will find this book at http://www.skylight.org.nz/Shop/What+Happened+to+Baby%3F

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Sands Coromandel are trying to raise funds to get a copy of the book “What Happened to Baby?” into every primary school in New Zealand, as a resource for families who have been affected by the loss of a baby. They need your help. Whether it is by monetary donation, the purchase of a book, or materials to make items to sell. Take a look at their facebook page for more information. They sell the most cute handmade ponies and elephants and even have some “twins” for sale!

The Lone Twin Network

The Lone Twin Network is a specialized group run by and for surviving twins whose loss has occurred at or around birth, in childhood, or during adulthood. This video is an account by surviving twins about living with loss. Shown in a BBCtv programme in Nov 2011.

Support meetings

It seems a long time ago now, when I first went along to a support meeting for others who had lost a baby child. Just getting to that first meeting took probably a year after my first invitation, but there I was, along with my husband and seven other couples or individuals who all brought with them their own painful stories of loss. It was a pretty difficult evening actually. It was one of the first meetings of its kind for some time and so all the stories were brand new and each one had to be told in full and each one was given all the time they needed for that unfolding process to occur.  It did feel good, when it came to our turn to talk about the details that had happened to us a year or so previously when our baby twin daughter died the day she was born. It was somehow healing to hear and share these moments with others. I came home that night feeling like a washed out dish rag. You might think that feeling like this would be a signal that it was something wrong to have done. It was hard work but after each meeting I gradually felt lighter and lighter. It seemed that each time I spoke about what had happened, and heard other people talk about what had happened to them, it got just a little easier each time. This group became a safe place to share my feelings. Everything that was said, stayed within that group. They weren’t family members or friends I had to see in any other context so it felt comfortable to share pain and suffering that I might not feel so happy to share normally.

Perhaps support groups are more prevalent these days because our own families are more distant or our own families many not be large or very accessible so a group like this can offer a safe, non-threatening place to share our emotions and concerns.

A group is not for everyone. We might feel we are private, quiet or independent people who have difficulty in groups, or we might think that a group would not meet our needs. However, at some stage or another, if we find there is no other outlet for our grief that is helpful, we should consider finding a group that we can visit. Groups are all different, some are quite formal and each person gets a chance to talk without interruption and other groups are less formal, with just a discussion over coffee in a relaxed setting. Even in the less formal groups it is important that everyone is heard if they wish to speak and that the needs that people came with are met as best they can be. There should never be any pressure to share though either.

We have tried to find other ways for people to meet others who have walked a similar path. Our magazine, Hearts & Wings is one way we hope which allows people to share with others, read about others but in their own space and time and privacy. So perhaps it might be like a support group in  different sort of way? On the local support page of our website there are some more options for groups around NZ to consider including joining up with our very active Facebook group which provides friendly, caring understanding people on a day to day basis.

However we get together, support groups help us to realise we are not crazy, just grieving…

Rosemary

Anniversaries & special days

It isn’t as if we don’t think about our lost twins almost all the time, especially in those early years, but somehow special days such as birthdays, anniversaries of particular events or the anniversary of their death, can bring to the front those deep emotions we may have been able to hold back on the more ‘normal’ days. There seems to be a resurgence of symptoms we might have thought we had left behind already somewhere on our journey. In the early years we wonder if we can manage to go back to those early painful feelings yet another time.

Sometimes, these special days bring to mind fond and happy memories, sometimes they bring us to a mood of solitude, or they may bring overwhelming sadness, grief, fear, regret or anger. Such powerful feelings. Being distracted, unable to concentrate, agitated seem to come as just par for the course really. There’s no ‘right way’ to feel or any time limit over when you should or shouldn’t feel this way.

So, is there anything we can do to help ourselves during this time? Many of the people I have talked to over the years and through my own experiences of anniversaries… ones that have worked out well and those in which we’ve failed badly to keep it all ‘okay’… have found one interesting fact to begin with. Quite often the weeks or days leading up to the event is actually worse and more stressful than when the actual day arrives. Those weeks before an anniversary can be harder just thinking about how it is all going to feel… will the day be okay, will I be able to do something to honour my loved ones or will I fall apart completely in front of everyone and if I do will that really matter… and also will anyone else even remember what day it is? The especially odd situation… when there has been the loss of one twin, is that the other twin still has a birthday to celebrate even though in many cases that is also the anniversary of the other twin’s death or even if it is not, it holds deep sadness that the other twin is no longer here to celebrate what was always a joint celebration and especially for a very young twin… the party must go on! There’s an excited little person who wants a ‘happy birthday’!

Working out in advance what you’d like to do always seems to help. Thinking about what is going to suit your needs and those others who share your loss. Looking after yourselves and those feelings even if it feels like you might be letting others down by not joining in with the party atmosphere they would prefer. Take care of yourself and try not to put yourself in too many situations where you know it is going to be too hard. A simple small family gathering might be just as okay to a three year old in the end than the fancy party you thought you should put on. Have it on a different day than the death anniversary, or tell yourself you will commemorate the death day on a different day… perhaps the funeral date instead so that you can free your mind for the party without feeling you have missed something or dishonoured someone by doing that.

Sometimes, people think about doing something very different from usual and they immerse themselves in fresh surroundings. Go to the beach, a movie, a place you wouldn’t have normally gone. A family in our coffee group has an ‘Aaron day’ and they take off somewhere special in his honour.

Take time to sit down with some photos, letters or memories if you have them. Maybe you could think about making a ‘memory box’ and start putting together things that help you to remember your twin/s. The items might be things connected with memories together or they may be items you have collected since which have become special or bring to mind special thoughts.

Scrap-booking has become really popular… maybe this is a way to remember for you.

Erect a memorial bench in a special place, perhaps a public place or just somewhere in your own property. What about garden ornaments like a sundial or statue? How about a pretty stained glass window?

Planting a tree is a lovely idea if you have a space for it or creating a memory garden. Then on those special days you can plant a new plant or spend time digging and weeding… and thinking.

Donate to a charity that was special to you or your twin or has become special since.

Fund a prize, cup or award in an organisation you have been involved with. Friends of mine built a Wendy house in the local play group in memory of their daughter who died at ten weeks. Emma’s house is a popular place to be especially if you are under 5!

Just most importantly is taking care or yourself, don’t over do your commitments in any area of your life at that time if it can help you to avoid any ‘avoidable stress’. Look after each other, you are all grieving in some way even if it looks like others aren’t so obviously. Make plans that you feel right about, in advance. Some years that will be more plans than others. Some years you might just want to ‘do nothing’. That’s really so okay too. There are no rules, no guilt to be had over what or what you haven’t done that you think you should compared to others. Just follow your heart…

Rosemary