Monthly Archives: March 2012

Beyond Words -grieving when your child has died.

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


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…


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…


The next pregnancy

The issue of subsequent pregnancy… For many of our readers the loss of their twins occurred before or around birth and they find themselves sometime, sooner or later, contemplating the idea of another pregnancy.

Firstly, we want to acknowledge two groups of readers of Hearts & Wings. Those who, sadly, are not in the position to be able to have another baby. Perhaps the twins were conceived with difficulty and now it looks like another pregnancy just won’t be happening. This is a huge grief in itself and requires a turn around in thinking and a re-adjustment of dreams. We won’t talk so much about this here but perhaps those who have been through this loss and grief might like to write and offer their thoughts. Particularly what got them through and how their life has panned out since all their precious babies are in heaven. It doesn’t happen often but another group of readers are those who have had another loss since their twins. I hope the families in these two groups know we are thinking of you and remember you.

So, we find ourselves deciding about another baby. It can be difficult to know when the “right time” is. Some are keen to become pregnant as soon as possible after the loss while others feel the need to give themselves some space to grieve. Either way deciding what feels right for you and your family is important. Sometimes a new pregnancy is a surprise to everyone and it might take time for this to feel right. It may take longer for one of the couple to get used to the idea than the other. Be patient… you have both suffered a lot of grief and while it may seem like a catastrophe to one partner for a time, it usually all works out in the end. Trusting yourself to be able to cope again with all the feelings that come with a new baby, may be the reason why a new baby feels like a negative thing to some. Perhaps a feeling of not wanting to go through the pain again if there is another loss, of feeling unable to cope if it isn’t all perfect this time round. So much to deal with that wasn’t part of the package the first time around! Be gentle with each other and take things slowly, step by step.

Once the baby is on it’s way there can often be more anxiety experienced than in a usual pregnancy. Depending on what went wrong to cause the loss of the twins, depends on what might make you most anxious. Perhaps the baby died unexpectedly at 23 weeks… so you might feel most anxious leading up to and as you pass through that time. Maybe there was a particular condition in the baby who died and until you see those first scan pictures and find it is all fine, you cannot help but worry. Overall, I think, most subsequent pregnancies are more stressful and don’t quite have the same feel as in the days before our loss when we didn’t think anything could go wrong with us! No one’s reassuring words of “It will be okay this time,” are worth anything until we hold a healthy little baby in our arms.

What about having twins again? Most of the mums we’ve ever talked to have all secretly or openly dreamed of having twins again. The feeling is stronger in some than others, sometimes they just think that only if there was a guarantee it would all be okay, would they want twins again, while others are bitterly disappointed when they find “There’s only one”. I know that I had to have a scan earlier on than I should have because I was continually thinking I must be having twins again and so I needed to do that to find out for sure before I went crazy. I came home from the first scan with our new pregnancy after our loss, in tears because there was only one baby. The scan looked oddly lonely with just one baby on the screen and it just didn’t seem right. With a little time I felt better with the idea and continued to enjoy the pregnancy and our new son who arrived 3 years after our twin daughter died. I knew in my heart having twins again was, firstly a long shot… even though their were twins in our family, it was still most unlikely that I would have another set, and secondly it would be a huge undertaking to go through a second twin pregnancy and also to watch one set of twins grow while we still would be grieving for our lost twin. Having another set wouldn’t fix our grief…

Telling others about the new pregnancy can be difficult. A lot of people don’t feel that same rush to let the world know that they did the first time. Perhaps it is the uncertainty of the outcome, maybe in feeling anxious yourself you don’t want lots of fuss from others who mean well but don’t make it feel any better. Maybe it is a little bit like walking on egg-shells for a time and so do whatever feels right for you and tell others when you feel ready… hopefully that is some time before people start looking sideways at your tummy!

Finding a midwife or doctor who will be sensitive to your unique needs and possible fragile state is important. Using the same carer as when you had your loss can be a comfort to some and saves a lot of explanation about your previous loss but sometimes people feel someone new might be help to give a change of feel to the pregnancy or they may have difficulty with the original carer due to the circumstances around the loss. Each person will feel differently and it is important to make a decision that you are happy with even if it means being a little more choosy than you usually are.

Having another baby doesn’t fix the grief of the loss of a baby but it does help to have a happy outcome and a new pleasant focus to your life. For me I tried as best I could to enjoy each moment with this new baby I was carrying. Knowing that life is precious and can be brief means that enjoying each moment, at just that ONE MOMENT, became important to me. As I held my new baby boy during those first few hours after he was born I had a sense that all the pain and distress of pregnancy and labour was still worth it for even just that one moment as I looked at him. Even if he was to leave us that day, as his sister had, it would be still a happy moment just then. I hope you can understand what I mean. As it turns out he is now a bright and happy ten year old who is just wonderful. He was followed by two more boys… it’s a noisy house! I never did get another set of twins nor did I get to have another little girl. I wonder what it would have been like to have another baby girl to hold… sometimes I wonder if having the boys was easier and less emotional but I can’t say…