Children’s Grief Awareness Week

Children’s Grief Awareness Week

Children's Awareness Week UK

Today is Children’s Grief Awareness Day, a global day designed to help us all become more aware of the needs of grieving children — and of the benefits they obtain through the support of others.

It is also the start of Children’s Grief Awareness Week (19th – 25th November 2015) here in the UK.

Children’s Grief Awareness Week 2015 is an initiative launched by the Childhood Bereavement Network, the UK body for support groups in the grief and bereavement sector, and Grief Encounter, one of the UK’s leading bereavement charities.

The theme this year is

‘SUPPORTING PARENTS AND CARERS, SUPPORTING GRIEVING CHILDREN’

The aim is to bring home the message that the first line of support for grieving children is those closest to them, and that we all have a part to play in supporting parents and carers in their vital role.

Key messages from the Childhood Bereavement Network:

  • 1 in 29 school age children in the UK have been bereaved of a parent or sibling. It is estimated that 24,000 parents die each year leaving dependent children.
  • After the death of someone close, children need support in their grief, nurture, and continuity, helping them weave together the threads of their past and their future. The care they get from those close to them is one of the biggest factors affecting how they learn to live with the loss.
  • It can be a daily struggle for parents and carers to support their children when they are grieving themselves.
  • Advice from parents and carers who have been through this include ‘trust your instincts’ and ‘don’t be afraid to ask for help when you need it’
  • Parents shouldn’t have to cope alone. Family, friends, colleagues, schools and the government all have a part to play in supporting parents and carers to support their grieving children.
  • Specialist support services should be available in all local areas for all grieving children and their families that need them – wherever they live and however they have been bereaved – helping them realise they are not alone.

Oh how I wish that I could read the above statistics and information as an ‘outsider’ – merely as a curious onlooker.

Sadly not, as in January 2014 my children joined the ranks of the bereaved.

As a consequence of this bereavement I, a qualified mental health worker and a trained family support worker, struggled to function. Many days I could hardly get out of bed or get dressed. I struggled to complete the most basic of tasks. Not only was cooking even a simple meal beyond me, eating was also something that I found very difficult – I didn’t begin to experience physical hunger again until at least eight months after Leah died. Yet I had the responsibility of parenting children who were grieving and hurting very deeply.

I particularly like and really connect with Brené Brown’s Parenting Manifesto taken from her excellent book Daring Greatly, but there is one line in particular that has been hugely challenging for me:

“Together we will cry and face fear and grief. I will want to take away your pain, but instead I will sit with you and teach you how to feel it.”

I’m telling you now, that there is one thing worse than experiencing the constant pain that lodged in my heart after Leah died; it is looking into my ten year old daughter’s eyes and seeing the pain and confusion in her eyes and knowing that there was nothing, absolutely nothing, that I could do to make this better and take away her pain.

There even were times in the early days when I tried to avoid eye contact because it was too painful for me to witness her pain. Imagine what it must feel like to be ten years old and have your parent, on whom you depend for emotional security, struggle to make eye contact with you, especially when you have just lost a sister whom you loved more than life itself and your family life has changed beyond recognition?

This is the reality of childhood grief.

For some children it’s even worse than this. Many families have spoken to me of their experiences of coping (or not coping) after the death of a child or parent. I’ve heard some devastatingly sad stories.

Adults who lost a sibling when they were a child, have told me of how their parents ceased to function after the death of a child and how these adults are still coming to terms with the emotional fallout from this.

I’ve been told about children being sent away to stay with neighbours and relatives while the adults in the house grieved – these children now grown up are still struggling to process their childhood loss.

I’ve heard of families breaking down as grieving parents tried to numb the pain in all sorts of maladaptive ways including alcohol misuse. I know of one young girl who had to be placed in foster care after the death of her sibling because her grieving mother became unable to care for her. How devastating must that be?

We have been fortunate to have had excellent support from family and friends. Last year, when it was too painful for my youngest and I to do things on our own together, there were others who accompanied us on days out so that we could still do fun things together.

Friends and family have ministered to us every step of the way. Our school aged children have also received excellent emotional support at their respective schools. After Leah died our youngest daughter’s P6 Primary School class supported her in many ways. One of the most tangible of these was by gifting her with a beautiful customized Memory Box in which she can store precious items that remind her of her sister. It was a most appropriate and thoughtful gift.

Memory box

Since Leah died last year we as a family have received input from Youthlife, the N.I. Children’s Hospice, the N.I. Cancer Fund For Children, Action Cancer, North West Counselling and from a Family Support Hub. From talking to other parents in online forums, the impression I get is that the support that is available to bereaved families in the UK is very much a “postcode” lottery, with some families apparently receiving little or no support. It has also been my experience that there is no coordinated mapping of services which means that even the professionals involved with a family are often not aware of what sources of support may be available. Oftentimes, it’s been other parents or ‘word of mouth’  that’s pointed me in the right direction.

It’s a long and difficult road though, we haven’t ‘arrived’ by any means. I sometimes think that grief is like an onion – there’s always another layer underneath.

#ChildrensGriefAwareness

Crying onion

The End Of An Era

The End Of An Era

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Last night was the P7 “Leavers’ Disco” at Ballykelly Primary School. The theme was “Celebrities” and the girls and boys were the celebrities. Every one of them, as they walked up the red carpet, looked so amazing.

Here’s my ‘celebrity’, looking way more than her eleven years.

imageToday, parents were invited to a farewell event in the school Assembly Hall, followed by a complimentary lunch.

As we gathered, a slide show of the children was displayed on the screen. Pictures of them from Nursery and P1 were displayed on a Notice Board.

Then all of the P7 pupils entertained us by playing three lively pieces on African drums. It was very professional, and all inclusive as every pupil participated.

After this, we went upstairs for a slide show presentation of the P7 trip to Edinburgh, where several of the boys and girls were interviewed about the activities that stood out for them. The pupils who didn’t go to Edinburgh interviewed the ones who did, so again it was all inclusive.

Then we returned to the Assembly Hall for the part that I enjoyed the most. Each child was called forward one by one. We were told their name, what school they are transferring to, what they will miss about Ballykelly Primary School, what they are looking forward to about their new school and what their ambition in life is.

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Several want to become famous You Tubers. A few hope to become professional footballers. One boy wants to become a policeman and help in the fight against crime. One girl wants to become famous and take over the world!

Each child was then given a booklet containing a photo of each P7 boy and girl and their answers to these questions, as a keepsake. What a lovely thing to look back on in years to come.

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After this, staff, parents and pupils were treated to a delicious lunch. During this time, the P7 pupils were busy engaging in the traditional signing of the polo shirts.

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Hunter’s Bakery supplied an amazing cake, which was cut and distributed. It was absolutely delicious.

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Then, that was it, we had to say goodbye and walk away.

For me, it was walking away from seventeen years of having children in Primary School. In Ebrington Primary School initially when we lived in the town and then in Ballykelly Primary School since 2002.

All four of our children have enjoyed their primary school years. We have such fond memories of Ballykelly Primary School.

There is of course a little piece of Leah wrapped up in it’s walls too. Saying goodbye to that is hard as well.

Memories of coming to Christmas Concerts and seeing Leah singing her heart out in the school choir.

Memories of seeing written work displayed on the wall along the corridor, when they were asked what they would like to be when they grew up and Leah had written that she wanted to become a missionary.

Memories of Leah’s P7 teacher’s collection of gems for arts and crafts and how excited Leah was when her teacher got a new order of these pretty gems from Baker Ross.

Memories of Leah’s P7 Edinburgh trip and the card she wrote to me saying that she had cried on the Thursday night because she missed me. Some day I will find that card again and there will be more tears.

How blessed our children have been, to have been so cared for and nurtured whilst being educated.

I never wanted what happened this past two years to be my life story, but so many things happen in life that we don’t get to choose. Thankfully God has placed many people in our lives who have supported us and loved us and made this journey more bearable.

The kindness and love shown to Miriam during Leah’s difficult illness and since her death, by the Ballykelly School community, has been enormously helpful. I have never taken it for granted and I will always appreciate it.

The Memory Box bought for Miriam by her classmates after Leah died, will always be a treasured possession and a reminder of the support that she received from them at such a difficult time.

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In September Miriam will start at Limavady High School, another school that has completely blown me away by the pastoral care that our older three children have received and with the love that has been shown to our family this past two years by the entire school community.

Thankfully, I know that my daughter’s education is in safe hands.

Grief has no rule book

Grief has no rule book

Today we finished clearing out Leah’s wardrobe of her clothes and footwear.

Certain items of sentimental value were picked out and placed in our Memory Box – her Girls Brigade hoodie, her LOST polo shirt, her favourite pyjamas while in Bristol, the extra pretty socks she wore to theatre in Bristol when they were removing her Central Line because she was critically ill with a “line infection” that was antibiotic resistant, the fleecy monkey poncho that so many admired, the dress she wore for the photo shoot with Nic a few weeks after her diagnosis, the top she wore on her first trip out of hospital after her transplant.

Leah in Costa Sep 13

I encouraged Leah’s sisters and some others who were close to her, to pick out the items that they liked from Leah’s wardrobe for themselves.

Seeing people that Leah loved wearing her clothes, brings me far more comfort, than seeing those items gathering dust. The remaining items went to the N.I. Hospice Charity Shop.

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There’s no timetable for grief, no right way or wrong way to remember our loved ones and to let go of personal possessions. Everyone has to find their own path through the sadness.

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Paradoxically, Leah’s medicine drawer lies untouched. I still have a need to gaze into it on a regular basis and look at the many drugs that kept Leah alive after her transplant. The ‘innohep’ (tinzaparin) is the anticoagulant injections that I had to give Leah every morning. She used to wince at how cold my hands were.

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The staff in Belfast City Hospital constantly complained that Bristol Hospital had discharged Leah home on ‘innohep’ as it’s apparently a drug they never use and they had to order it in especially. In Belfast they use enoxaparin/clexane.

The first couple of times it was quite a palaver to get the ‘innohep’, but our Teenage Cancer Nurse Specialist went to great lengths to try and smooth things out for us.

It might sound strange, but it brings a wry smile to my face to see the drug that was somewhat begrudged to us, lying unused in the drawer.

So many memories.

The Memory Box

The Memory Box

 

Our eldest daughter Rachel left and Leah middle with their daddy, December 2012.
Our eldest daughter Rachel on the left and Leah in the middle with their daddy, December 2011

Before Leah left home in N. Ireland to go to Bristol Children’s Hospital for her bone marrow transplant, she gave personalised gifts to some of the people closest to her.

For her daddy she made a memory box.

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For Christmas 2011 she had gifted him a “Daddy and daughter day out” promise.

Then they spent this day together by first going to church at the Vineyard in Coleraine.

Afterwards they had a picnic in the beautiful seaside resort of Portstewart in the Summer of 2012.

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On the Monday night of the 14th July 2013 I took Leah and her boyfriend Nic and her cousin Deborah to the Youth Night at the Portstewart Convention.

When this had ended Leah informed me that they were walking down to the harbour. I was chatting to friends – nothing new there – and when I finally went looking for Leah, Nic and Deborah, they were nowhere to be found!

I tried all of their mobile phones and nobody answered. It was late at night and pitch dark. My daughter had a life threatening illness and I was supposed to be a responsible parent – I started to feel very anxious.

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After what seemed like way too long, they reappeared around the coastal path, with Leah brandishing a jam jar full of sand.

She’d insisted on walking a considerable distance in the dark, until they reached the exact beach where she and her daddy had walked together the previous year.

There she filled up the jar that she had brought with her and that I had known nothing about. This jar was labelled and put into the Memory Box.

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The remainder of the box contained other bits and pieces that she had bought for her daddy.

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Leah left the memory box for Horace when we departed on Sunday 21st July ’13 with a note for him to not open it until he and Simon returned from Bristol on the Wednesday.

Horace was accompanying Simon to and from Bristol to have his bone marrow harvested and frozen until Leah would be ready to receive it.

Leah made a card for Simon and left a gift for him too.

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The bar of whole nut chocolate now sits on my husband’s dressing table, still in it’s wrapper – too sacred to be eaten.

How precious each of these items, so lovingly chosen, now seem.