Bereavement Support Newsletter Spring 2020

Welcome to the spring edition of the newsletter.

The Twins Trust BSG exists to support all parents and carers who have lost from a multiple birth whether it is during or after pregnancy. We are sorry for your loss and hope that you will find some comfort in the newsletter. If you would like your personal story to be included in a future edition of the newsletter please get in contact: bereavementsupport@twinstrust.org.

Mother’s Day can be a particularly difficult day after a baby dies. I find it helpful to plan something into my day that involves my twins.  Usually it will include visiting the cemetery with some spring flowers, often daffodils as they are my favourite flower, and some ‘time’ during the day to light a candle with my family. My husband Dominic often buys me a card from them both too. I hope that the day is gentle for you all. Remember that the Facebook group is a great support if you feel you need someone who understands on Mother’s Day, or any day really.

- Sharon

A message from Keith Reed, CEO: COVID-19

We want to reassure families that we’re doing our utmost to continue to support you. Staff and volunteers have been stepping up to find ways to continue to provide support. Where it's not possible to provide it in our more traditional ways, we're finding alternatives, video calls, email, Facebook support group etc.

Staff are now working from home. If you need to contact Louise or Sharon, please email them at bereavementsupport@twinstrust.org. This email address is monitored regularly.

Thank you so much for your continued support throughout this period. Our community is very special and I know you’ll continue to support one another through this period of uncertainty.

Poems

Ellie wrote this before her first birth after her loss.

Tomorrow is my first birthday as a mum of three
But there will still be only one name on the card 'to mummy love me'
It's a fact I have to get used to and maybe the first time is always hard
But I think I know every birthday will have an ache within my heart

It should be chaos, cold tea, living on snacks and hardly sleeping a wink
but instead there will be no cries or nappy changes just a lot of time for me to think
My trio should be together, our big girl leading the way, the twins growing and gaining a little every day

But this is another day our loss is so painfully real
Along with Christmas, our big girl's birthday, and the dates the twins' fate was sealed.
The reality and surrealness can be mixed up most days, my wish that tomorrow will pass in that numb survival haze

 

"My dad wrote this for Cadenza after we lost her identical twin Fiorella."

How I Know

How do I know
there is another part to me
one that is just like me?
I feel you coursing through my veins
urging me to carry on,
and who will always be with me.
Who gave all that one could give,
so we would never be apart.
A primal sharing from the very start
so I could journey forth as both of us.
And I feel your selfless touch,
your guiding spirit
rest lightly on your other half,
as you whisper softly to my soul.
A gift that is beyond all love,
for I am you and you are me
and I know that vast enormity
of love that made us always one.

Clare Belsito

 

No Words In Time

Sometimes there are no words…
They don’t have a place
In times when the mind has gone into outer space.
Sometimes there are no words…
Somehow they cannot describe the feeling
In times of happiness, sadness, grief and healing.
Sometimes there are no words…
They are lost and become meaningless
In times of shock, fear, fate and hopelessness.
Sometimes there are no words…
There is nothing to say
In times like this…Time is the only way.

Kate Baker-Loveday

22.02.2013  ©

Personal stories

In memory of our beautiful girl,
born too soon, too small and too poorly

Primrose, 1 June 2017 – 6 June 2017

"It is approaching three years since we lost our daughter, but I remember everything about that night as clear as day. My mind will often wander to that time, often when I am alone, driving in the car, or lying in my bed..."

This personal story has kindly been shared by a member of the Bereavement Support Group, who asked to remain anonymous.

Read more

 

Georgina Elizabeth and Harriette Rose

When Georgina Elizabeth (Georgie) and Harriette Rose (Hattie) arrived at twenty-two weeks and two days old on 2nd November 2018, Tom and I were absolutely shell shocked, heartbroken and devastated. I cannot put into words how we truly felt. We were lost. Our beautiful identical twin girls arrived too soon.

Georgina and Harriette were welcomed into the world at The Royal Albert Edward Infirmary Wigan and during our stay we stayed at The Pearl Suite. The midwives and Doctors took great care of myself, Tom, Georgina, Harriette and our families. 

Despite the terrible experience, The Pearl Suite was such a special place for Tom and I. Although the circumstances were unimaginable, it was a memorable place and a safe haven where we met Georgina and Harriette for the very first time. It was where we were able to spend some special moments with our beautiful girls; we were able to hold them, take photographs of them, dress them in their handmade clothes, introduce them to our parents and my sister, Megan and make memories such as foot and handprints.

When we came out of hospital and returned home, we decided that we wanted to do something to remember and honour Georgina and Harriette. We decided that the best way to do this was by supporting The Pearl Suite and giving something back to our local hospital who supported us both in our time of need. Tom and I set up a gofundme page.

Initially, we hoped to raise five hundred pounds so that we could buy some items for The Pearl Suite in order to support those who needed to stay there and may sadly experience a devastating loss like ours. Our target of five hundred pounds was surpassed very, very quickly and the figure currently stands at five thousand two hundred and ninety-five pounds! We are so grateful for and touched by the kind and generous donations from our families and friends. To this day, we still cannot quite believe it! 

My Mum (Yvonne Gallagher), Tom and I met with Jo Birch and Audrey Livesey (both midwives) in November 2018 in order to discuss the purchase of items for the room using the fundraising money. The first meeting was really productive and following this we set to work purchasing items for the room. Some things were easier to buy than others (no NHS red tape!) but after many messages to Jo and Audrey things started to come together. 

We bought many items for The Pearl Suite.

My neighbour, Sheila, also taught me to knit which I found extremely comforting in the months after my loss. I mastered making soothing squares, which were donated to the Neonatal Ward, and also blankets too for The Pearl Suite!  Sheila also made many beautiful blankets for The Pearl Suite. Other people donated blankets and wool, which was really touching and thoughtful.

Tom and I also donated one of our moses baskets which we bought for Georgina and Harriette to The Pearl Suite, we had a hand made plaque designed for this. The other moses basket was donated to McGuire’s Funeral Directors who looked after Georgina and Harriette and arranged such a beautiful funeral at St Mary’s and St John’s Catholic Church for our special twin girls. 

We have also had a similar plaque made for the room, which marks the ‘renovation’ in memory of Georgina and Harriette.

I really enjoyed transforming the room from start to finish and I like to think that this will be an ongoing process. It gave me a focus at such a difficult time and it has really helped my recovery. My Mum has been absolutely amazing in supporting me with this project and without her the room wouldn’t be so special for future families who sadly need to spend time there. It has truly been an honour to be able to do this for families who may have to use the room in the future.

Tom and I would love to continue to be involved with The Pearl Suite and we still have some remaining funds. Even when the final funds have been spent, Tom and I would like to continue to help others who may sadly find themselves in our situation, as it is such a difficult and traumatic experience. I regularly keep up to date with the release of new books on the topics of grief and bereavement and I would really like to donate these to the hospital in memory of Georgina and Harriette.

I am very much a ‘doer’ and not only did The Pearl Suite ‘save me’ in the darkest of times but other things did too…

Jo Birch, my midwife, invited me to partake in the interview panel for the new bereavement midwife post at Wigan Hospital, recognising the way in which this would help me to come to terms with my loss whilst also preparing the way for others to receive help and an improved service in the future. Despite the interview process being highly emotional, I really enjoyed the experience. I strongly feel that by taking part in this, I have truly helped others who may find themselves in such a heart-breaking situation, like Tom and I, in the future.

I took part in Baby Loss Awareness Week 2019. I read two poems which I dedicated to Georgina and Harriette, at their funeral service, at the service, almost a year since they were born. Not only did I wish to remember Georgina and Harriette at the service, but all of the other babies who are no longer here. I also wished to remember their parents who have been through the worst experience that a parent could ever go through, and make them aware that they are not alone.

Baby Footprints – dedicated to Georgina Elizabeth

These are my tiny footprints, so perfect and so small.
These tiny footprints never touched the ground at all.
Not one tiny footprint, for now I have wings.
These tiny footprints were meant for other things.
You will hear my tiny footprints in the patter of the rain.
Gentle drops like angel tears of joy and not from pain.
You will see my tiny footprints in each butterfly’s graceful dance.
I will let you know I’m with you, if you just give me a chance.
Even though I’m gone right now, we will never be apart because I have left my tiny footprints safe within your heart.

 

An Angel Never Dies – dedicated to Harriette Rose

Don’t let them say I wasn’t born,
That something stopped my heart.
I felt each tender squeeze you gave,
I’ve loved you from the start.
Although my body you can’t hold,
It doesn’t mean I’m gone.
This world was worthy, not of me,
God chose that I move on.
I know the pain that drowns your soul,
What you are forced to face.
You have my word, I’ll fill your arms,
Someday we will embrace.
You’ll hear that it was meant to be, God doesn’t make mistakes,
But that won’t soften your worst blow,
Or make your heart not ache.
I’m watching over all you do,
Another child you’ll bear.
Believe me when I say to you,
That I am always there.
There will come a time, I promise you,
When you will hold my hand,
Stroke my face and kiss my lips,
And then you’ll understand.
Although I’ve never breathed your air,
Or gazed into your eyes,
That doesn’t mean I never was,
An Angel never dies.

 

Before Georgina and Harriette were born, I joined TAMBA, now Twins Trust. Following the loss of the twins I then joined their bereavement support group, The TAMBA, more recently Twins Trust, Bereavement Support Group, led by Sharon Darke. Sharon paired me up with a lady who had lost twin boys at a similar gestation to Tom and I and who was also a teacher and the same age as me! It was the best thing that I did after losing the twins. The constant support via text message and what’s app message has been absolutely amazing and has really helped me in the darkest of times. I would now say that we are now true friends. I have quite recently taken on the role of befriender and I hope to give back to Twins Trust.

My last piece of advice is to try new things! I never thought that counselling would be for me, but it really helped me. I also started yoga, again something which I would have never imagined myself doing. It was great for me mentally and really gave me some ‘time out’ from my grief.

Quite recently I have become the Cradle Wigan Ambassador and I am now working very hard to organise a fundraising event in the spring whilst also launching Cradle Wigan at Wigan Hospital.

Tom and I welcomed Matilda Hope (Tillie), our beautiful rainbow baby, into the world on 17 October 2019. Tillie has brought us so much happiness and has really helped to mend my broken heart. She is so precious.

40th anniversary afternoon tea

The question was there from the beginning, “Why are we here?”.  It was an honour to be invited to celebrate the 40th anniversary of the Twins Trust, mingle with the great and good and reflect on the successes of the charity in supporting parents of twins, triplets and more…but why were we here?  For a member of the Bereavement Support Group there’s always been a feeling of being the shadow wing of the main charity, the part you don’t know about until you need to.  This has often been echoed in conversations with people at these events and shown in the subtle (and not so subtle) shifts in body language and tone when we explain what we do for the charity.

The sense of unreality was heightened by the disconnect between us and the range of tiny canapes beneath what felt like a wedding marquee rather than the hushed circle of chairs we were more familiar.

We talked amongst our group, took photos and tried to balance drinks and tiny plates while making conversation, circling in and around the question.  Why are we here?

The discomfort is from the sense that the only reason we were there was because we were parents of twins and triplets but not all of our children were still with us.  I was there as a father of twins, but my sons were stillborn.  I couldn’t join in stories of the challenges of parenting twins, not in that way at least. 

I’m a big believer in the power of ‘and’ to shift thinking and allow seemingly opposite things to exist without taking away from each other.  Doing the same here, helped a lot.  We were here because we had lost children and because we were part of the Twin Trust’s support for others like us.  We were there because of what we did, not just because of what had happened to us.

The opening speech surprised us all by underlining this point in a powerful way.  We had expected a general message of support for the work of the Twins Trust in supporting parents navigating the challenges of raising twins, triplets and more, and its work in ensuring the best outcome for those pregnancies. 

There was a feeling of collective shock in the room when his speech was much more than that.  He drew attention to the charity’s work of supporting bereaved parents speaking as one himself. He spoke of the experience his wife and he went through 33 years ago when his son died at birth, contrasting the differences between how bereaved parents were treated then and now.

He spoke of the grief he felt and how a midwife said to him matter-of-factly, “You probably don’t want a photo,” rather than offer kind words. He regrets to this day, not having a photo.

After the speech, we made sure that we spoke with him to thank him for his support. He took the time to speak with each of us as we shared stories of our children’s lives, deaths, the lasting impact on our lives that followed without them, and our continuing, changing bond.  It was a special moment to have these experiences recognised and share ideas on what more can be done to support others joining our club. 

His speech highlighted how far we have come, and how much there is to do.  It also drew attention to the work of the Twins Trust Bereavement Support Group no matter how long ago the loss. The group has resources and befrienders to support anyone affected by this type of bereavement and are there to provide a listening ear and hope for the future.

- Richard

Lone Twin Network

I just wanted to pass on some information from The Lone Twin Network. We often have people who we come to us as adults wanting support after losing their twin and we refer on to the Lone Twin Network. I made contact with David who is the chairman from the network and we very much compliment each other’s work. They support people over 18 who are lone twins, while most of our support is aimed at bereaved families.

Here is the link to their website: lonetwinnetwork.org.uk

They have an active Facebook group which sounds similar to ours, 4 newsletters a year and 6 meetings around the country. They also have a directory where you can choose to match yourself up to someone for support.

I thought that some of you with survivors might be interested to know about this support for when they are older.

Fundraising

Thank you as always to our fantastic fundraisers. If you have any fundraising news, please contact Lucie at luciewigley@twinstrust.org.

  • Following the success of her work bake sale last July, Rebecca Clough was also busy in the lead up to Christmas, making and selling reindeer hot chocolate and magic reindeer food to raise money for the Twins Trust Research Rocks appeal.
  • Katy Lang organised a fabulous Charity Ball at the Peak Edge Hotel, in Derbyshire on 25 January, for the Twins Trust TTTS appeal. 

 

Twins Trust Bereavement Group 10k fundraising run

A group of us from the Twins Trust bereavement group decided to take on the challenge of running a 10k in May. We are all of very differing abilities, including some people who never run, to some that run regularly, with many inbetween!

Most of us have lost one or both of our twins and are running and are trying to raise some money in their memory. We also have Keith, our CEO at Twins Trust joining us and Louise who helps with our group. We will be joined by many of our family and friends either running or spectating.

Our bereavement group gives support to bereaved families at any point in their grief. It is often the first time that they have spoken to anybody about their baby/ babies who have died. For me, Tamba (now Twins Trust) was my lifeline for coping with my grief of losing my twin boys Charlie and Joshua. There is always more that we would like to do and any money raised will allow us to do more in the way of ‘meet ups’ within the bereaved community as well as providing more training opportunities for the befrienders.

As we run, we will be thinking of our babies and raising the awareness of our very special and important bereavement group.

If you would like to join us please follow the link below to enter:

Queen Elizabeth Olympic Park 10k Run, 23 May

A number of people, including one of our befrienders, are unable to join us due to the date or location so I have found a virtual run that you may wish to do instead. This means you run your own 10k in your own time wherever suits you.

The team

We are a group of bereaved parents and Twins Trust employees. The bereavement group supports many families whose babies/children have died from a twin or triplet pregnancy. The money raised will help to provide support to those that have been bereaved, in various ways, such as helping towards Meet Ups across the country, providing training and opportunities for the befrienders to meet allowing them to continue to give the great support that they currently offer as well as helping to provide support booklets and leaflets for bereaved parents and for health professionals.

Please visit our fundraising page to read about each of our team members, and to donate to our bereavement group.

Twins Trust BSG 10k run

If you are able to come along and support us I am sure it would be very appreciated amongst our runners. Afterwards we hope to have a big ‘Meet Up’ in the park with a picnic. It would be lovely to see some of you again and to meet some of you.

At the time of writing these events are still scheduled to take place. We understand that the government guidance regarding COVID-19 is changing rapidly therefore it’s possible that the situation may change. We’ll of course keep all participants updated.

Join us on a breathtaking adventure

"Losing a child is an unimaginable pain.  A time where you can feel very alone in a big world. We will walk together and talk together.  No mountain too tall as we aim for our stars on the week before Father's day. We not be able to stop the Downpour, but we will all walk with you in the Rain." Michael XXXX

'Big Steps for Small Feet' is a chance for our charities to unite as one, in togetherness and hope, raising awareness for a cause that is close to each and every one of us.  It's an opportunity to show the world that collectively we can make a difference.

This June we’re taking on Ben Nevis at night, taking Big Steps for Small Feet. We hope to give those who need it the chance to walk and talk together, scaling new heights to unite and raise money for charities working to support bereaved families every day.

We're proud to be one of ten charities taking part in the challenge this summer. This is a fully organised trek with guides, support en route, food and transport provided from Glasgow. 

Join us on this exciting adventure, we’d love to have you on our team! No minimum sponsorship required, we just ask you to raise as much money for Twins Trust as you possibly can.

Find out more: Ben Nevis Night Climb

Please note this link is on the main Twins Trust website

The climb is for anyone who would like to raise money for Twins Trust.  For more details or to sign up please email luciewigley@twinstrust.org, we'd love to hear from you.

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bereavementsupport@twinstrust.org