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

One Year On

One Year On

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I haven’t blogged in 10 days – probably the longest time I’ve gone without blogging in a year.

I think it’s because I don’t know how I’m feeling, now that the first anniversary of Leah’s death has been and gone.

Now that it has been one full year since I have hugged and kissed my second born, much loved child, am I actually supposed to feel a little less sad?

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Taken before the Rend Collective Concert June 2013

One year on, is my heart supposed to feel a little less broken?

Or am I supposed to have developed coping skills that enable me to bear the pain of loss without, for example, bursting into tears at the sight of Leah’s favourite foods on promotion in the supermarket?

Despite the fact that Leah has been gone for a year now, sometimes I open the drawer laden with post transplant medication in her bedroom, gaze at the contents and wonder: “Did all of this really happen?”

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Yet, at other times I feel strong. A friend whose husband had taken his own life when their children were small, used to tell me “When the worst thing that can ever happen to you has already happened, there’s nothing left to fear.”

Now I understand what she meant.

Although I’m often sad, I have a lot less fear than I once had.

If God can give me the strength to get through this, well then what is there left to fear?

This is the "Kneeling Plate" on Leah's grave with one of her favourite Bible verses.
This is the “Kneeling Plate” on Leah’s grave with one of her favourite Bible verses.

We have also been so blessed with the support of family and friends along the way.

On Friday 16th January, the actual anniversary of Leah’s death, despite ice, snow and ungritted roads, we had 24 young people (mainly Leah’s school friends) at our house, to remember Leah with us.

We laughed, cried, chatted, sang some of Leah’s favourite worship songs, watched her “I Am Second” video, looked through her memory books, ate yummy food and played party games.

This was the third Friday in January, on previous years some of these girls used to come to our house on the third Friday in January for Leah’s birthday sleepover.

As the chatter of these young people filled our house, I thought about how fitting it was to remember our spiritual, fun loving, outgoing daughter in this way.

Then on Saturday 17th, my sister, her husband and three of her four adult children came to stay. It felt good to be surrounded by the love of family.

On Sunday 18th, we got together with my husband’s entire extended family for church, and lunch afterwards in my sister-in-law/brother-in-law’s house. Leah always loved these big family get togethers and so do I.

On Monday and Tuesday of this past week, my husband and I attended a Bereavement Programme, provided by Action Cancer.

We are certainly well supported by our friends, family, church and community.

For that we are really thankful, it all helps.

We still have to live without our daughter though, we still have to face the pain.

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This song by Casting Crowns is a song that Leah and I used to listen to.

I’ve listened to it a lot since Leah died.

I find the words very comforting.

“Praise You In This Storm”

I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say “Amen”, and it’s still raining

As the thunder rolls
I barely hear Your whisper through the rain
“I’m with you”
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

[Chorus:]
And I’ll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I’ve cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I remember when
I stumbled in the wind
You heard my cry to you
And you raised me up again
My strength is almost gone
How can I carry on
If I can’t find You

But as the thunder rolls
I barely hear You whisper through the rain
“I’m with you”
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

[Chorus]

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth

The Highs and Lows of Caring

The Highs and Lows of Caring

I was reflecting this morning on my role as Leah’s main carer for the last year of her life. For our loss of Leah is not just one loss, it comprises many separate losses that come together to make up the whole loss.

I miss caring for Leah.

My first experience of caring for Leah 24/7 was when she was admitted to our local oncology/haematology ward in February 2013 and subsequently had an appendicectomy.

I adapted to my role as carer quickly and easily. I recorded in my diary that Leah “is so uncomplaining and is at all times thoughtful and considerate.”

I took one more day off after Leah came out of hospital and then I returned to work and left her in the care of her devoted daddy. Horace says that no matter what wee thing he did for her, even if it was just picking up a page of school work that had fallen to the ground, her immediate response was “thank you daddy”.

Leah stayed off school for a week after she got out of hospital, but studied every day, while playing her favourite music, especially 10,000 Reasons by Matt Redman

“The sun comes up, it’s a new day dawning
It’s time to sing Your song again
Whatever may pass, and whatever lies before me
Let me be singing when the evening comes”

Horace says that the two lines “Whatever may pass, and whatever lies before me, Let me be singing when the evening comes” really affected him at that time. Although Leah was undiagnosed, he was quite convinced that this wasn’t the end of the story. On hearing the words of this song he became overwhelmed with emotion and had to leave the room and go outside so as not to cause Leah any anxiety or distress.

When Leah was diagnosed in April ’13 I tried to continue working, but it quickly became apparent that Leah was going to need me at home full-time.

I love my work and initially I missed the “escape” that work provides. However I soon settled into my new role of accompanying Leah to her many appointments and providing her with emotional support.

Once we got to Bristol, my input became “hands on”. Leah gradually became too weak and ill to do anything for herself. She needed me to help her to the toilet, wash her in the shower, dry her, dress her, put cream on her face, help her with mouth care etc. Leah was very good natured and I loved caring for her.

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Only once during our time in Bristol did Leah get annoyed with me, it was in October and it was regarding her GCSEs. We were working together on an email to send to her school about the help she would need in order to catch up with her studies on her return home. Leah studied as best she could, while in Bristol, with the help of the lovely hospital teachers, whom we both adored.

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However Leah was very stressed about how far behind she was with her studies and she wanted me to put a lot of this detail in the email to the school. I felt that at this stage her school just needed an outline of the basic facts, like what date we were likely to be home and when she needed the home tuition to start.

I then wouldn’t send the email because we weren’t in agreement. Leah accused me of not understanding how far behind she was with her studies and how important her school work was to her. She stormed out of Sam’s House and headed into the Royal Fort Gardens next door.

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This left me in a total quandary as her carer. I appreciated that Leah needed some space and cooling off time. She was 15 years old and needed a break from her mother’s constant presence. I was also very aware that she was quite weak and ill.

High dose steroids had left Leah with severe muscle weakness – if she tripped and fell she would have been unable to get up again. It was also starting to get dark. After 50 minutes of anxiously praying for her safety, I went after her and silently escorted her back to our bedroom at SAMs.

Thankfully the X Factor was just starting and she loved that programme.

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By the time the X Factor was over, Leah had calmed down. At bedtime she wanted me to tuck her in and kiss her goodnight like every other night. This endearing bedtime ritual had started shortly after we arrived in Bristol.

Sometimes I would be exhausted and I would forget and get into bed without tucking her in and kissing her. Then I would look over and Leah’s big doe eyes would gaze reproachfully at me from across the room. I would get straight back out of bed and pad over and kiss that smooth bald head and tuck her in with the furry blanket brought from home and tell her once again how much I loved her.

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By the time we returned to Ireland after 14 weeks in Bristol, I was emotionally depleted. I loved looking after Leah, but I had put many of my own needs on hold and now they were clamouring for attention.

Once I arrived home, after an absence of almost four months, the needs of my family, my domestic responsibilities and a small mountain of mail also clamoured for attention.

Our Clic Sargent Social Worker advised me to do a self referral to Action Cancer for counselling and that was an excellent piece of advice.

I received an appointment almost immediately and I’m still attending. The support has been invaluable. I’ve also received a course of aromatherapy massage appointments from Action Cancer.

The latter have helped my sleeping pattern, which was very useful, as I’m very reluctant to take any medication for sleep or mood. I’m already on very strong daily medication to control my migraine and I feel that’s enough for my body to cope with.

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In December ’13 I was summonsed to a work related meeting to look at the feasibility of me returning to my job. A provisional date in March 2014, pending an Occupational Health interview in January ’14 was agreed upon, for me to return to work.

I’m the primary bread winner but I wondered how I was going to combine my caring responsibilities with working, even though my basic contract is only part-time. Leah’s consultant assured me that Leah was getting better and would hopefully be returning to school in March 2014. I wasn’t convinced.

I’m now returning to work part time in September 2014. I’m very pleased to be returning to work – and I’m looking forward to it – but I somehow never imagined it would be under these circumstances.

As a nurse, I have worked over the years in the areas of mental health, learning disability, physical disability, special needs and with children who have life limiting conditions. I have had a lot of contact with parents who are carers. Some of them have cared for many years for children and young people who are very severely disabled.

Nevertheless I don’t think that I ever really understood the emotional complexity of being a mum whose child needs 24/7 care, until I experienced the situation first hand.

On the one hand there is the exhaustion that comes from caring for someone 24/7. Then there’s the guilt that comes from knowing that you are neglecting, or at the very least short changing, your husband/partner and your other children.

If you aren’t looking after your ill or disabled child, you are probably thinking about them, talking about them, shopping for them, or else catching up on your sleep.

On the other hand, there is the total and utter love and devotion that you feel for your ill/disabled child or young person. There’s the closeness, the bond, the tenderness, that develops between the two of you. It doesn’t matter how much help they need – you carried them in your womb, you gave birth to them and you love them unconditionally, in a way that only a Mother can.

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So although at times I did struggle with the 24/7 commitment of being Leah’s carer, I really miss the extraordinary closeness that we shared because of that.