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.

Food.jpg

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.

Amusements

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.

ice cream

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

Swallowed by a Fish.JPG

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.

Leah with flower in her hair
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 20 Dec 2013

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.

Daisy Lodge
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.

IMG_8146
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.

12795339_10206132011565333_917499867841687935_n

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.

Tollymore_Forest_Park_2_original

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

icecream.jpg

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.

12825567_199007063789538_1369039522_n

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

IMG_3985

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.

FullSizeRender

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.

IMG_8209

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

nicfc-logo

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.

12795479_198963503793894_8923268488833942631_n

 

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.

Siblings

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.

IMG_2730

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.

Labels

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.

parenting-manifesto-light

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.

IMG_3248

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.

IMG_3254

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

IMG_3260

All around this tree was devastation and a tangled mess.

IMG_3257

It left a gaping hole in the forest bed.

IMG_3249

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.

IMG_3258

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.

IMG_3261

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.

image

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.”

image

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

image

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.

image

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

image

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)!

image

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:

image

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.

image

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.

imageimage

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.

image

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!

image

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.

Back to Reality

Back to Reality

image
Painting of Daisy Lodge by Anthony Hughes

The week we just spent at Daisy Lodge as a family of five was truly amazing. We were waited on hand and foot and completely spoiled from we arrived until we left. Our large family room was absolutely beautiful, with patio doors opening onto a veranda overlooking Tollymore Forest Park.

image

The food was better than any hotel, very plentiful and always served with a smile.

imageimage

Nothing was too much trouble. Staff were on hand 24/7 to support families in whatever way was needed. There were family activities available every day, either at Daisy Lodge or in Newcastle, door to door transport was provided when required. These are copper pictures that our family made in a group activity during the week:

image

Spending a week in the company of other bereaved families was also beneficial. We could laugh or we could cry, no explanation was ever needed.

image

I feel like we were emotionally and physically nurtured.

Coming home again was a different matter entirely though.

We went via Belfast. Our eldest daughter will be resuming her university education this autumn and we went to see her new accommodation. It’s lovely.

Then we cut across the Boucher Road to head onto the West Link via the same roundabout with the big silver ball that I negotiated every Friday when I took Leah to her outpatients appointment at Belfast City Hospital.

image

Silently I recalled being blue lighted around this roundabout with Leah on Thursday 16th January ’14 on our way to the N.I. Children’s Hospice. I write here about how Leah died in the Children’s Hospice, surrounded by love.

I hadn’t verbalised my thoughts, I hadn’t uttered a word, but a few minutes later my husband pointed out the outline of the hospice to me, over to our right, above the motorway. I could feel my grief and loss like a physical pain in my chest.

As we got nearer home after our week away, it somehow felt to me like the day we returned home from the hospice on the day that Leah died, when I hadn’t been home for two and a half weeks. I could feel that same emptiness in my heart.

Initially after arriving home yesterday I busied myself with routine tasks. Then eventually I faced Leah’s empty bedroom. I needed to see her empty wardrobe, to prove to myself once again that my daughter was gone and never coming back.

imageimage

On walking back up the hall from Leah’s room, I glanced into another room and caught sight of a pair of Leah’s old Babycham trainers, worn to within an inch of their life. She kept them for rough wear to run about outside in. They were just sitting there, mocking me, as if any minute Leah might walk through the door and put them on.

image

I had a desperate urge to scream at my husband to come and lift them and put them somewhere that I couldn’t see them ………… but I never uttered a word.

It’s enough for me to be upset, without distressing everyone else unnecessarily.

Instead I went upstairs to where I keep Leah’s bear hat beside my bed. I buried my face in her wee hat and inhaled my daughters scent.

imageimage

There I cried my tears of loss and grief.

For cry I must, because grief has no shortcuts.

The Bible says that God records our tears and preserves them in a bottle – I think some of us must have crates of those bottles stacked up in heaven – like a whole load of milk crates!

image

Something else I know, is that I have One who walks with me and that He is the friend who walks closer than a brother Proverbs 18:24. His grace is sufficient for my every need, 2 Corinthians 12:9.

Grace – how I love that word – His grace is not the light at the end of my tunnel; it’s the light that will guide me through this tunnel.

One of my favourite Christian books, read several years ago is What’s So Amazing About Grace? by Philip Yancey. If you want to gain an understanding of God’s grace I highly recommend this book.

“Amazing grace
How sweet the sound
That saved a wretch like me
I once was lost, but now I’m found
Was blind, but now I see”

Leah and I loved listening to the modern rendering of “Amazing Grace” by Chris Tomlin. I first heard this version when it was the backing track for the film Amazing Grace which was released in 2007. This film tells the story of William Wilberforce and the abolition of slavery. Leah watched this film in the cinema when she was 10 years old and she loved it. She then bought the DVD as a gift for her brother and watched it again.

image

The City of Bristol earned it’s wealth from the slave trade. The abolitionist movement subsequently became very active there. While we were in Bristol, Leah and I snuggled up in bed together and once again watched the Amazing Grace DVD. We were inspired by the tenacity and courage of William Wilberforce.

Daisy Lodge

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.

image

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.

image

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.

image

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.

image

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.

image

For that I am truly thankful.

image