Mother’s Day Weekend 2016

We as a family are indebted to the Northern Ireland Cancer Fund for Children for their help and support. We have once again benefitted from one of their amazing therapeutic short breaks at Daisy Lodge in Newcastle, Co. Down.

I’ve previously written about our trips to Daisy Lodge in Daisy Lodge, Back to Reality, Parenting Teenagers, The Gaping Hole of Grief, and in A Haze, a Daze and a Maze.

On Tuesday 30th April 2013, when Leah’s Haematology Clinical Nurse Specialist at Altnagelvin Hospital told me about the NICFC and suggested referring us to them for support, I had no idea what that support would look like.

Leah before she became ill

Initially we were allocated a Specialist Worker. Our Specialist drove the 70 miles from Belfast to meet with our family and we warmed to her straight away. Our initial contacts with her were of the “getting to know you” variety, as she assessed what our needs were and explained to us what help was available.

When Leah and I returned from spending 14 weeks in Bristol, traumatised from all that had happened, our Specialist was there to support us. Within days she pulled up in her car and took Leah and I out for afternoon tea in a quiet location. The cafe had a gift shop attached so we browsed there too. After so many weeks of sickness and hospitalisation, it felt abnormal to be doing normal things, but it was very helpful to be doing them in the company of somebody who understood our journey and who could support us emotionally.

Leah was immune compromised and unwell and she had to spend a lot of time at home in her bedroom. Our Specialist understood how boring this would be for a teenager, she talked to Leah to find out her interests and started her on jewelry making. Our Specialist provided the materials and Leah was able to make gifts for some people that Christmas.

Then, during the 2.5 weeks that Leah spent in ICU in Belfast City Hospital before she died, our Specialist spent time with me, in the hospital cafe, providing me with emotional support and giving me time to talk.

Leah in December 2013, three weeks before she died

After Leah died, our Specialist kept in touch with us and she ensured that we as a family availed of the therapeutic short breaks at Daisy Lodge in Newcastle, Co. Down.

It’s very difficult to be a parent when you’re grieving and your heart is broken – potentially every family member becomes ‘lost’ and isolated in their grief and sadness. It’s very difficult to do things together as a family when the very act of doing so is such a painful reminder of the one who is missing.

Coming to Daisy Lodge as a family has become a vital part of our healing. When we are there, the five of us sleep in adjoining rooms so we are constantly in close contact.

All meals are provided so there isn’t the distraction of shopping/preparing food/cleaning up – we are there simply to enjoy each other’s company.

While staying at Daisy Lodge, parents and adult children are offered a complementary therapy session (massage/reflexology), to ensure maximum relaxation. There’s usually an opportunity for the Mum’s and older girls to get their nails or makeup done as well.

Always, in the background, the therapeutic specialist staff are available to listen and to support. There are optional group activities that all the family can take part in. It really helps to know that on all occasions you’re in the company of people who understand; whether you are interacting with the other families staying there or with the courteous and compassionate staff.

This past weekend our girls played board games in our bedroom on the Saturday morning – that would NEVER happen at home.

Saturday afternoon all five of us went for a walk at Tollymore Forest Park, when we are at home we’d be doing well to even get two family members agreeing to do anything together.

At Tollymore, Simon and Miriam displayed a newfound interest in nature photography!

We chatted, we ran, we laughed, we remembered, we healed another little bit.

Then we (minus Simon – his computer beckoned) headed into Newcastle for Maud’s Ice-cream – it was yummy!  

After a delicious evening meal back at Daisy Lodge (we will be rolling home) Miriam, Rachel and I put on Lush face masks and then they both gave me a massage as one of my Mother’s Day treats.

After this, Horace and Rachel headed off to use the sauna downstairs.

Later on Horace and Simon played a game of pool together. I was feeling very relaxed (!) and said that I would just lie in bed and rest my eyes for a little while. I must have been very relaxed because I fell into a deep sleep and had the best night’s sleep that I’ve had in ages. I didn’t even hear any of them coming to bed.

Sunday morning (Mother’s Day) us mums had a choice between getting our makeup or our nails done. I already knew what I wanted. Leah loved painting her nails and she used to paint my nails too. I seldom wear nail varnish since she died. Getting my nails done would be a special way of remembering her on Mother’s Day.

Each mum also received a gift bag of treats. I waited to open mine until I was back in the room with my girls. Rachel and Miriam gave me a Yankee Candle. I love candles.

Then there was just enough time for a relaxing bath, with one of the Lush bath bombs that my eldest gave me for Christmas, before heading down for dinner.

Sunday lunch, as always, was truly scrumptious.

Sadly after dinner it was time to pack up and say goodbye – Rachel back to University life in Belfast and the remaining four of us back to our home where our two younger children rapidly became their usual monosyllabic selves and retreated to their caves bedrooms absorbed in their electronic devices. However, I feel so rested and relaxed and I have lots of happy memories and gorgeous photos.

The Cancer Fund for Children support:

• Children who have been diagnosed with cancer
• The siblings of a child who has been diagnosed with cancer
• The parents of a child who has been diagnosed with cancer
• A child whose parent has been diagnosed with cancer

We as a family very much appreciate the fundraising efforts of so many people who have walked, swam, ran, cycled, abseiled, done parachute jumps or given their loose change to support the Cancer Fund for Children.You are helping to bring healing to families whose lives have been ravaged by a cancer diagnosis.

 

Children’s Grief Awareness Week

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.

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

Parenting Teenagers

I know why our stay at Daisy Lodge was referred to as a ‘Therapeutic Break’ rather than just a holiday. The staff there go to such lengths to ensure that each family have a relaxing time. All our needs were catered for. The result was that all of our family were very relaxed and interacted happily with each other, in a way that sadly, doesn’t often happen at home.

Our three children even posed happily for a photograph before we left. The last time that I recall Simon and his sisters willingly getting their photograph taken together was in 2011!

Unfortunately, the Daisy Lodge ‘spell’ wore off soon after we returned home: our youngest two have retreated to their caves (bedrooms).They only emerge when their need for food supercedes their fixation with their electronic devices.

Communication is once again monosyllabic most of the time.

The exception to this being our eldest daughter. At 21 she has emerged from adolescence and she dazzles me with her wit and wisdom, along with her many other qualities.

She lives away from home, is financially independent and works part time to support herself while studying for a university degree.

During one of Rachel’s recent visits home, my youngest daughter was being especially perverse and was pushing all my buttons. I was getting more and more frustrated. When my youngest had left the room, my eldest daughter turned to me and said “Don’t worry Mum, I used to be just like her and look how well I turned out.”

I replied “Rachel, I can assure you that very thought is the only thing that keeps me from signing myself into a home for the mentally bewildered.”

This week I was scheduled to take my youngest daughter school uniform shopping. She will be starting at Limavady High School on the 1st September, the same excellent school that her three older siblings attended.

I certainly wasn’t looking forward to this task. Last year it was just awful, I cried the whole time. This past weekend while sorting through bags of old school uniforms to take them to the Charity Shop I cried my eyes out while removing Leah’s name from her old uniforms.

Happily for us, Rachel my eldest, offered to help us with the school uniform shopping. She gave up her two days off work to drive the 140 mile round trip home for this purpose.

Rachel read through the uniform list issued by the school, drew up a shopping list and off we headed to Coleraine to the shop where we always buy our school uniforms.

Not a tear was shed, only chitter and chatter and even some laughter.

So for any parents reading this who are in the trenches with uncooperative teenagers and feeling battle weary, I say to you:

Keep loving your teenager.

Keep hugging them.

Keep the lines of communication open.

Make sure they know that no matter what, you will always be there for them.

Let them know that home is where they will always be loved and will always belong.

Then some day, like me, you will discover that your uncooperative teenager has emerged from the “stormin’ hormones” and it’s all been worth it!

I recently discovered Brené Brown’s Parenting Manifesto, excerpted from her book Daring Greatly: How the Courage to Be Vulnerable Transforms the Way We Live, Love, Parent, and Lead.

I think that Brené has so much compassion and wisdom.

Surviving Christmas

Christmas – the time of year that most bereaved people dread. With its emphasis on family life, traditions and togetherness, the bereaved feel the loss of their loved one more keenly than ever and the empty chair is at it’s most conspicuous. For those whose loved one became ill and/or died around Christmas – well, it’s even harder.

Christmas has been evident in the shops for quite a while now but it was partly camouflaged by the Halloween stuff. Now that Halloween is over, there is no holding back – the commercialised side of Christmas is in full swing.

I went into my local Chemist today to collect a prescription and was confronted by all their Christmas stock – the tears started to sting my eyes. Leah loved Christmas, she would have loved looking through all the gift sets on display, selecting gifts for friends and family.

I was unfortunately a captive audience in the Chemist today, due to having to wait for the prescription. My emotional distress started to escalate.

The sales assistant was pleasant and friendly. She suggested that myself and another customer try out some perfume samples while we were waiting. This was just too much for me, Leah loved perfume.

There was a delay on the prescription so I excused myself and headed for the privacy of my car, pulling up my hood as I walked, to shield my tear stained face from passers by.

Last Christmas the Northern Ireland Cancer Fund for Children gave us tickets for our whole family to go and see Peter Pan in the Millennium Forum in Derry.

We had to get special permission from Leah’s consultant for her to be allowed to attend, thankfully he said yes. Now that the children are older (aged 10 – 19yrs at that time) it was relatively unusual for all six of us to do something together away from the house.

Miriam, our 10 year old, was particularly excited. On the way there she said “Mummy, is this the way it’s going to be from now on? Are the six of us going to be doing more things together as a family?” I replied happily “Yes, that’s right.”

During our 14 weeks in Bristol, Leah and I had missed our family so much, that family togetherness was now even more precious than it had already been. That pantomime turned out to be the last thing that the six of us went to together.

We arrived a bit early because my husband dropped us at the door and then went off to park the car. This explains the empty seats and the preoccupation with mobile phones!!

There were other families at the Pantomime also who were battling childhood cancer. During the interval I was chatting to another family, their wee boy was called Niall. He sadly lost his battle with the illness in April ’14.

I think it’s fantastic that charities like the Northern Ireland Cancer Fund for Children help families like us to make happy memories with our ill children, when things like pantomimes are the last things on our minds.

Two weeks before Christmas my sister-in-law asked if any of us wanted tickets for the community carol service in the Arts & Cultural Centre in Limavady on Monday 23rd December. I said no, thinking that Leah was too unwell to attend, but of course you couldn’t keep her down ( or in) – it turned out to be the last function that Leah ever attended.

Leah really enjoyed attending that Carol Service and I’m so glad that she went. Her sister brought her home but by the time they got to the house, Leah was crying with the pain from her spinal fracture. Earlier that month an X-ray of Leah’s thoracic spine had shown a small spontaneous infracture between T6 & T8. Leah was at times totally incapacitated by the levels of pain that she was experiencing. We were told that this level of pain could not be explained by such a tiny fracture.

On Friday 27th December Leah became very unwell and had an emergency CT scan of her lungs which resulted in her being admitted to the Cancer Centre at Belfast City Hospital. On Saturday morning 28th December Leah was crying with the pain in her back and the nurses and physiotherapist on the ward in the Cancer Centre expressed surprise when I informed them of her spinal fracture.

Leah’s breathing deteriorated on Saturday afternoon and she was transferred to ICU and became critically ill. The next day (Sunday) our haematologist informed me that the CT scan that Leah had done on the Friday showed that it wasn’t just a “small infracture” of the spine that Leah had but a “wedge compression fracture” between T6 & T8. This explained the degree of pain that she had been experiencing. I was devastated when he told me this, thinking about my beloved daughter and her broken body, thinking about how she had smiled and kept going through so much pain.

Leah’s pain was always well controlled in ICU.

Leah’s spontaneous spinal fracture is the one symptom that no one has never been able to adequately explain. She was a fit and healthy girl – other than her diagnosis – before her treatment started in July ’13. She was only on steroids for three months. Leah was already off steroids by the time she had the first X-ray that diagnosed the fracture initially in early December.

One of our consultants told me that if Leah had lived, she would likely have gone on to develop problems with her hips and knees as well. He said that she would possibly have faced a lifetime of hip and knee replacements.

So……….Christmas.

I’m terrified of when some “unknowing” person uses that Northern Irish phrase and says to me “Any word of Christmas with you?” I will just feel like bursting into tears, but if I’m at work I shall have to smile sweetly and respond appropriately.

Yet, I have to remember that the God who has got me this far isn’t about to abandon me now.

I have to remember that the many precious promises in God’s word are for the hard times, not just the easy times. Verses like:

2 Peter 1:3
His divine power has given us EVERYTHING we need for a godly life through our knowledge of Him who called us by His own glory and goodness.

Psalm 23:1
The Lord is my Shepherd I shall NOT want

Philippians 4:19 (KJV)
But my God shall supply ALL your need according to His riches in glory by Christ Jesus.

Sometimes we have to just hold on by the tips of our fingernails.

This is a song that a good friend introduced me to recently – listening to it brings me a lot of comfort.

MY TROUBLED SOUL, why so weighed down?
You were not made to bear this heavy load
Cast all your burdens, upon the Lord
Jesus cares, He cares for you

Jesus cares, He cares for you
And all your worrying
Won’t help you make it through
Cast all your burdens upon the Lord
And trust again in the promise of His Love

Chorus
I will Praise the mighty name of Jesus
Praise the Lord, the lifter of my head
Praise the Rock of my Salvation
All my days are in His faithful hands

Daisy Lodge

As we departed for our fully catered, family holiday provided for us by the NI Cancer Fund For Children, my eldest was reading through our confirmation letter and said “It’s for a party of five.”

I got really worried and said “But there’s six of us.”
She corrected me and said “No mum, there’s only five.”
I said again, getting more stressed “No, there’s six of us.”
Very patiently she repeated “Mum, there’s only five of us.”

Sadly and slowly I realised that she was right – we used to be six, but since Thursday 16th January 2014, we’ve become a “party of five“.

Oddly enough, we had this debate sitting strapped into a 5 seater car – the mind is a strange thing – especially in times of grief.

I’ve been really looking forward to our family holiday at Daisy Lodge in Newcastle, Co Down. It’s been completely rebuilt and I knew that it would be absolutely beautiful and located in stunning surroundings.

In my naivety I didn’t anticipate the emotional affect of being in such a place though. As soon as we arrived and I saw how well the whole place was kitted out to make our stay as pleasant as possible, it hit me like a ton of bricks – the only reason we were in this incredible accommodation was because we’ve had a child with a cancer diagnosis.

We had somehow joined that exclusive club that nobody ever wants to belong to. Right in that moment I knew I wanted to resign.

But it was too late, the diagnosis train that we had boarded in 2013 had already carried us to it’s final destination, without ever giving us the option of disembarking.

Many kind people have fundraised and worked hard, to build this amazing place, to sweeten this journey, for those of us who have no choice, but to travel this road.

For that I am truly thankful.