Tears of joy and tears of sorrow

Tears of joy and tears of sorrow

Today I read the blog post of a good friend and fellow blogger and my eyes were drawn to this photo. She didn’t say which hospital in N. Ireland that the photo had been taken in but my heart was already pounding in my chest and my eyes were filled with tears, before my mind had even formed the words Belfast City Hospital.

Endoscopy Waiting Area BCH

The ICU where Leah was treated for 2.5 weeks before she died had no Relatives Room within the Unit and worse still – from my perspective – no Visitors/Relatives Toilet. Every time (day or night) that I needed to use the toilet, I had to leave the ICU and make my way through the long convoluted corridors of the hospital, to the public toilets in the main Foyer, via the double doors in this picture. These toilets were very busy and in constant use, therefore the hardworking hospital cleaning staff were unable to maintain them in pristine condition, although they were cleaned regularly. I detested using them as I was terrified of carrying an infection back to my immunocompromised and critically ill daughter.

Each time on my return to the ICU I had to ring the bell first at the outer door and again at the inner door, then wait to be granted permission to ‘visit’ my desperately ill daughter, who disliked me leaving her. This was the hardest part, knowing that Leah was waiting on me to return, but not knowing if I would be allowed in, or if I would be asked to wait in the corridor.

I quickly learned that the best thing to do was to restrict my food and fluid intake so that I NEVER voluntarily left ICU – the only occasions that I left were when requested to do so. Unfortunately, due to the policies and procedures of ICU these occasions happened regularly throughout the day. I then sat on a hard plastic chair in the corridor outside ICU, waiting anxiously for that precious moment when I would be allowed back into Leah’s cubicle.

I found that having a cup of hot cinnamon milk for breakfast filled me up and didn’t make me run to the toilet. At lunch hour I often had a plain bun and a soft drink, like 7up. On one occasion during doctor’s rounds, an ICU consultant lectured me on the importance of looking after my health so that I could take care of Leah. A few days later when I was sitting  in the corridor outside ICU, this same consultant came along and noticed me eating a bun. He called over to me “Look at you eating junk food. That’s exactly what I was talking about.” I flinched with embarrassment and the indignity of it all, but I managed to hold back the tears until he was out of sight. I don’t honestly think that he meant to be cruel or unkind, I just don’t think that he had any idea of what it’s like to be the mother of a dying child and to feel as if all of your dignity and privacy has been stripped away, along with so much else.

Eventually, a few family members started to bring me in home cooked food some evenings, which I really appreciated. In order to get some measure of privacy,  I ate it while sitting on these softer seats in the Endoscopy Waiting Area, instead of in the corridor outside ICU. Any time that I needed a private space to talk to visitors or to my Support Worker from the NICFC  we also came and sat in this Endoscopy Waiting Area adjacent to the hospital foyer. This is where I sat on Monday 13th January 2014 as we discussed Leah’s end of life care and I shared my distress and frustration at having been told that we had ‘no options – I had been told that Leah was going to die in ICU there in Belfast City Hospital even though we had said that we wanted to take her home or to the Children’s Hospice.

Some weeks after Leah died I approached the management of Critical Care in the Belfast Trust  regarding various issues that I wanted addressed. I assured them that I had no issue whatsoever with the medical care that Leah had received as I knew that everything possible had been done to try and save her life. I referred to the kindness and compassion shown by so many of the staff who had cared for my daughter.  I deliberately did not address issues pertaining to the fabric of the building, lack of facilities etc. as I knew that their likely response would be ‘lack of funding‘. I assured them that most of the changes that I wished to discuss wouldn’t cost any money to implement. One of these changes was that I wanted for parents/carers of teenagers and young adults being cared for in Critical Care to be allowed to come and go freely. I said that it was an absolute disgrace that there had been some days when I felt that I had spent more time sitting in a hard plastic chair in a hospital corridor than at the bedside of my dying child.

In December 2015 I received an email from a senior member of staff that contained the following sentence: when we had a 16–year old in the (Intensive Care) unit a few weeks ago, her parents came and went freely without an eyebrow being raised – it was just accepted as the right thing to do.

I cried when I read this – tears of sadness for what we didn’t have when Leah was dying – but also tears of enormous joy and relief, knowing that no other families will endure the enforced separations that I experienced.

 

An Unexpected Treat

An Unexpected Treat

We weren’t expecting to be able to avail of a therapeutic short break for bereaved families at Daisy Lodge this Summer. We had the privilege of being there for Mother’s Day earlier this year. We also had the opportunity of a short break there the past two summers. We felt that now that it’s been over two years since Leah died, that maybe it was time for us to step back and let other more newly bereaved families benefit from this amazing facility.

Then last Wednesday, out of the blue, we got a call to say that there had been a cancellation and they were offering us the option of going there at the weekend, if we were available.

My heart leapt with excitement. I quickly scanned both my work calendar and my personal calendar. Thankfully any commitments we had were ones that could easily be rescheduled. Simon unfortunately was unable to accompany us and Rachel couldn’t stay the entire Friday until Tuesday, due to her work commitments. Other than that we were good to go.

I couldn’t stop smiling for the remainder of the week, eagerly anticipating this most unexpected treat. When we first went to Daisy Lodge in 2014 I found it a very emotional experience. I probably cried for most of our first stay. Just being there was such a stark reminder of the journey that we were now on, one that I definitely didn’t want to be on.

However I now primarily look on Daisy Lodge as a place of healing for me and my family. A place where each of us is helped to relax and to heal, a place where we are encouraged to have fun interacting with each other, to feel like a family again, after the trauma of witnessing Leah endure such gruesome treatments and then eventually die. Daisy Lodge is a place where we feel supported, both by the compassionate staff who are on duty 24/7 and by our interactions with the other families who all walk a similar road. A place where no explanations are ever necessary.

Daisy Lodge.jpgI know from talking to other bereaved parents on private forums, that the devastation of child loss often results in the fragmentation of family relationships. A therapeutic short stay at Daisy Lodge goes a long way towards the healing and rebuilding of these fragmented relationships.

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On one of the days during our stay this past weekend, we went into Newcastle to the Pleasure Lands Amusement Park (Rachel’s boyfriend Matt also joined us that day). Horace’s face was a study as he and the ‘kids’ spun wildly on the Waltzers. It was his turn to laugh at my facial expressions when I went on the Roller Coaster with Rachel and Matt.

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Despite all the spinning around, our stomachs were settled enough to indulge in some award winning Maud’s ice cream while we were in Newcastle.

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That night there was a “Photo Booth” back at Daisy Lodge, where Horace and I were ‘swallowed by a big fish’!

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On Monday morning Horace and I enjoyed a trip to the nearby Burrendale Hotel swimming pool and spa. I tried to compensate for all the wonderful food I’d been eating all weekend by swimming 22 lengths of the pool, but before you start thinking that’s really impressive I need to tell you that it’s quite a small pool, not an Olympic sized one!

Monday afternoon saw Horace and I engaging in archery – the last time I recall shooting with a bow and arrow was while staying with my cousins in Clonmel, Co. Tipperary, when I was about ten years old. We used to make our own bows and arrows in those days, then climb trees and shoot. The ones at Daisy Lodge weren’t homemade of course. I was so engrossed in competing against my husband during the archery session that I forgot to take any photographs, but he beat me anyway!

Monday evening the four of us participated in a craft activity and worked together to produce these:

Craft Activity

Tuesday morning it was time for the four of us to say a fond goodbye to the staff and the other families. We were by now well rested, well fed, refreshed and ready to face the world again. Thank you to the Cancer Fund for Children for once again refuelling us on this most difficult of journeys.

God on Mute

 

Mother’s Day Weekend 2016

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 RealityParenting 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.

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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.

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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.

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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.

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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.

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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.

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

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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.

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

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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.

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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.

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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

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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.

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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

Parenting Teenagers

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.

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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.

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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.

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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.

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The Gaping Hole of Grief

The Gaping Hole of Grief

While we were staying at Daisy Lodge my husband asked me to come for a walk with him in Tollymore Forest Park. He wanted to show me something that he had discovered, which he felt was a metaphor for the effects of grief and loss in the life of a family.

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I have written directly on the subject of grief on many occasions. Naturally, the theme of grief and loss runs through most of my blog posts, but some of those blog posts have been written almost exclusively about the effects of grief.

First, I wrote Grief – the Pain that Goes on Hurting, next came The Storm of Grief. After this, there was Grief Has No Rule Book, followed by Grief Has No Shortcuts. More recently I wrote Grief Really Is About The Small Stuff and Grief Creeps Up When You’re Least Expecting It and then Wave After Wave Crashes Over Me.

In my role as a volunteer with Youthlife and also in my paid employment as a Family Support Worker, I’ve learned that so many people are living with the effects of loss.

Abortion, miscarriage, infertility, neonatal death, child loss, sibling loss, loss of a spouse or parent, separation, divorce, repossession, loss of health, employment, a significant relationship or even one’s reputation.

Then there is the parent whose child has a disability, or whose child’s lifestyle is very different to the one that their parents would wish for them. Those parents often grieve deeply for the child that they once thought they had, as they learn to let go of the dreams and the plans that they started off with.

There are so many different types of loss and each one can be excruciatingly painful.

Sometimes people say to me “Oh my loss isn’t as bad as yours.

Personally, I don’t think that comparisons are particularly helpful. When you’re grieving a significant loss and in deep pain, I don’t think that it matters whether your loss is more, or less, than anybody else’s. When you’re going through it, it just feels like the end of the world, or your world anyway.

So what did Horace want to show me in Tollymore Forest?

A large tree that had been uprooted in a storm.

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As it fell, it had stripped the surrounding trees of their branches.

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All around this tree was devastation and a tangled mess.

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It left a gaping hole in the forest bed.

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Horace says that this is a metaphor for grief and loss.

The bigger the tree, the greater the impact.

The greater the loss, the greater the devastation.

Some of the smaller trees that were close to the fallen tree are bent under its weight.

However, as we continued to survey the scene, we noticed some other things as well: it was a very dark part of the forest, but where the fallen tree had shaved branches off the other trees, the sunlight was breaking through into the clearing.

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Also, as I looked closely at the bent saplings beside the fallen tree, I could see greenery – evidence of new growth. In spite of everything, there was new life here.

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It reminded me of a quote by Anne Lamott that I have posted on here previously:

You will lose some one that you can't live without

It also makes me think about a conversation that I had with a woman I met recently, who has experienced huge loss in her life.

In the 1990’s her brother was murdered in the troubles – a case of mistaken identity. Two and a half weeks later their mother died of a broken heart.

The doctor told them that there was nothing medically wrong with their mother’s heart, she had literally died of a broken heart – as a grieving parent I can understand that.

This woman has had five other family bereavements, as well as those of her brother and mother.

She told me that overall, what she has been through has made her stronger. Yes, she said, there have been many times when all she could do was cry her eyes out and when she struggled just to get out of bed. However, through it all, she has learned  “not to sweat the small stuff” and to grasp the opportunities that life presents with both hands. She also told me that in her fifties she changed career completely and retrained to do something that she really enjoys. She now uses these skills, in a voluntary capacity, to be a blessing to others who are in a difficult situation.

This reminds me of the Bible verse in
Isaiah 45:3 (NKJV)

“I will give you the treasures of darkness
And hidden riches of secret places,
That you may know that I, the Lord,
Who call you by your name,
Am the God of Israel.”

Sometimes the lessons that we learn in the sad and painful times in our lives become the “treasures of darkness“.

We slowly come to realise, that in those dark and painful times, we have acquired a wisdom that we maybe, just maybe, could not have learned in any other way.

A Haze, a Daze and a Maze

A Haze, a Daze and a Maze

My husband says that the past two years since Leah took ill and died, have been like a haze, a daze and a maze.

This weekend we’re having a family break, along with other bereaved families, at Daisy Lodge in Newcastle, Co. Down. I write here about our first visit to Daisy Lodge, last year.

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What is the purpose of a therapeutic short break at Daisy Lodge?

According to the N.I. Cancer Fund for Children website:
“At Daisy Lodge we aim to restore a family life that’s been uprooted by cancer. Short breaks provide exhausted families with the chance to spend quality time together after many months spent in isolation or on the hospital ward. They will be able to recharge their batteries, increase their sense of well-being and gain support from the charity’s Therapeutic Specialist. They will also get the chance to meet and gain support from other families in a similar situation.”

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After lunch today Horace suggested that we went to Castlewellan Forest Park to check out their Maze.

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It sounded like a fun idea ………. until we became hopelessly lost and it suddenly started raining very heavily.

We found that we were going around in circles and facing a lot of dead ends.

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Life’s like that sometimes – lots of going around in circles with lots of dead ends and the downpours just keep on coming.

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At one stage, we thought we’d found an exit, but it wasn’t the right one, it was locked, there was no escape – from the maze or the rain (or the camera)!

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When Leah was diagnosed, she said that we “had to see the bigger picture” but sometimes it’s very hard to see the bigger picture. Depending on what difficulties we are going through, all we see is sadness, frustration and no hope.

It can be so incredibly difficult at times to remember about that bigger picture.

In my Bible reading this morning I was struck by this verse in Romans 14:13

May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit.”

Sometimes in this world there is very little hope and joy.

I thought about that this week too as I stood sobbing at Leah’s grave, two nights in a row, gazing at one of her favourite Bible verses on the kneeling plate there:

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I try so very hard to cling to hope, joy and peace, but sometimes I feel utterly defeated by life’s circumstances.

Eventually today, we got out of the maze, the rain stopped and the sun shone.

We climbed up to the viewing bridge and how different everything looked.

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It occurred to me that maybe that’s what God sees when he looks at our lives – not just a bunch of crazy, random “happenings“, but a “bigger picture” that He is working together in us for a greater purpose. (Romans 8:28)

A bigger picture that will one day all make sense, probably not in this life, but when we meet Him face to face.

Then, before the rain made it’s inevitable reappearance, we explored a little bit more of this magnificent estate.

I loved the children’s adventure playground, with it’s natural colours, carved animals and a refreshing deficit of brightly coloured plastic.

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After this we headed to the lake. The walk right round it is just over two miles, but by now the sky behind us was getting dark again and we had only just dried off so we didn’t fancy another soaking.

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On our way back to our car, we noticed a quaint looking café and the prices seemed reasonable, but we are so well fed at Daisy Lodge that stopping, even for a snack, was out of the question!

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We are blessed to have this time out together as a family, kindly provided for us by the N.I. Cancer Fund for Children and the many people who fundraise for them.