The 2014 Calendar

The 2014 Calendar

In October 2013 when Leah and I were packing to leave Bristol, one of the families that we had become close to gifted us a 2014 calendar containing beautiful colour pictures of Bristol. During our fourteen weeks there, I had fallen in love with Bristol – well, as much of it as I had seen anyway. I really appreciated this thoughtful gift, as well as their friendship.

Bristol Calendar

A place of honour was found on the walls of our new home for this picturesque calendar. However, January 2014, the first month in that calendar, sadly brought with it the death of our beautiful daughter Leah.

Leah in a hat 2012

We never discovered what beautiful scenes of Bristol were displayed alongside the other months, because to this day that calendar remains open on January 2014, still hanging on our wall, frozen in time.

January 2014

To my knowledge this was not a conscious decision on anybody’s part, nor do I recall us ever discussing this as a family. It just is. Other calendars get turned over monthly and removed at the end of the year. When the time is right this calendar will come down too, just not yet.

Next month I will fly to Bristol with the one who hasn’t returned there since donating his bone marrow in the hope of saving his sister’s life.

Leahs study area
Leah’s study area

We are going there for the University  Open Day as he has expressed an interest in studying there next year. I’m quite familiar with the university quarter of Bristol: Sam’s House where Leah and I stayed when she wasn’t in hospital is adjacent to some of the university buildings. While Leah was busy studying for her GCSE’s at the study area that she had set up in our bedroom, I used to occupy myself with going for walks around the local area.

Although my children are grieving, their lives are going on and moving forward and that is just how it should be. Leah would never have wanted it any other way. Our eldest moved to live and work in England last week. We miss her but I’m just so proud of her. The day that she left N. Ireland I received lots of supportive messages from friends, which I really appreciated. One of the most encouraging messages that I received was this one:

Well done that, in spite of all your family have been through, you have raised a girl with an adventurous, independent spirit which you are nurturing. There will always be a part of her that will never leave home. Bon voyage.

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Being Part of the Family of God

Being Part of the Family of God

I’m on holidays in Edinburgh this weekend. I’ve never been to Edinburgh before. When I’m at home in N. Ireland I attend a relatively traditional church, so when I’m away from home I enjoy visiting churches with a more contemporary style, especially ones with a multicultural congregation. We are all going to be together in heaven, so we may as well start getting used to each other down here.

After this I looked, and there before me was a great multitude that no one could count, from every nation, tribe, people and language,standing before the throne and before the Lamb.

Revelation 7:9

While looking for a church to attend this weekend I initially used Google search and Google maps, then I visited the websites of the various churches that my search had elicited. Ideally I wanted one not much further than about three miles from where I’m staying, so that eliminated several churches that looked really good. Other churches were eliminated from my search for various other reasons. I discovered that there are many churches to choose from in Edinburgh so I prayed and asked God to help me choose the right church. I eventually picked Destiny Church  in Leith.

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As I approached the Destiny Church building this morning, dressed very casually, I saw two men in very smart suits and ties, both carrying Bibles, walking in the same direction. I immediately worried that I had misunderstood the dress code for Destiny Church, but these two men walked on by and entered the “Free Church” down the road. I would hate to look conspicuous by getting the “dress code” wrong – it has happened to me before!

On my arrival at ‘Destiny’ I was warmly welcomed and offered a cup of tea, coffee or herbal tea. I asked for a cup of cold water which was quickly provided. As soon as the ‘Welcome Team’ realised that I was from N. Ireland they introduced me to their pastor – Sammy. Within minutes of meeting him I discovered that his brother is somebody I know, as he is the pastor of a church in my hometown that I have visited several times, so I felt right at home.

During the service I sat beside a lovely woman from Singapore, now living in Spain, who regularly visits the UK. A casual onlooker would have thought we were long-lost friends just reunited! After the service when we had to say good-bye we hugged each other warmly.

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The style of worship was contemporary and led by a multicultural group of young people. Some of the songs were new to me and the words were lovely, other songs were ‘golden oldies’, like “Blessed Assurance” by Fanny Crosby, one of my favourite hymn writers:

Blessed assurance, Jesus is mine;

Oh, what a foretaste of glory divine!

Heir of salvation, purchase of God,

Born of His Spirit, washed in His blood.

 

This is my story, this is my song,

Praising my Savior all the day long.

This is my story, this is my song,

Praising my Savior all the day long.

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Perfect submission, perfect delight,

Visions of rapture now burst on my sight;

Angels descending, bring from above

Echoes of mercy, whispers of love.

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Perfect submission, all is at rest,

I in my Savior am happy and blest;

Watching and waiting, looking above,

Filled with His goodness, lost in His love.

I rarely make it through a Sunday service without tears and this was no exception. Singing verse two of that hymn led me to think of Leah, now with the Angels, singing God’s praises.

The Bible teaching was brought to us by Pastor Pete and was based on John 5: 16-47. He applied the Word both to the believer and the seeker. He also quoted from C.S. Lewis     during his sermon. I really like C.S. Lewis and it never ceases to amaze me how many people quote from him!

Towards the end of his sermon Pastor Pete read this lovely poem by Myra Brooks Welch to illustrate the difference that Jesus can make in us when we surrender our lives to Him:

The Touch of the Master’s Hand

‘Twas battered and scarred, and the auctioneer

      Thought it scarcely worth his while

To waste much time on the old violin,

      But held it up with a smile.

“What am I bidden, good folks,” he cried,

    “Who’ll start the bidding for me?”

“A dollar, a dollar. Then two! Only two?

      Two dollars, and who’ll make it three?”
“Three dollars, once; three dollars, twice;

      Going for three…” But no,

From the room, far back, a grey-haired man

      Came forward and picked up the bow;

Then wiping the dust from the old violin,

      And tightening the loosened strings,

He played a melody pure and sweet,

      As a caroling angel sings.
The music ceased, and the auctioneer,

      With a voice that was quiet and low,

Said: “What am I bid for the old violin?”

      And he held it up with the bow.

“A thousand dollars, and who’ll make it two?

      Two thousand! And who’ll make it three?

Three thousand, once; three thousand, twice,

    And going and gone,” said he.
The people cheered, but some of them cried,

    “We do not quite understand.

What changed its worth?” Swift came the reply:

    “The touch of the Master’s hand.”

And many a man with life out of tune,

      And battered and scarred with sin,

Is auctioned cheap to the thoughtless crowd

      Much like the old violin.
A “mess of pottage,” a glass of wine,

    A game — and he travels on.

He is “going” once, and “going” twice,

    He’s “going” and almost “gone.”

But the Master comes, and the foolish crowd

    Never can quite understand

The worth of a soul and the change that is wrought

    By the touch of the Master’s hand.

After the service there was plenty of time to mingle and chat. Before I left Pastor Sammy took the time to pray with me. I felt blessed and encouraged. How lovely it is to be a part of the family of God – to enter a building as a total stranger and to quickly feel so welcome and ‘at home’.

Consequently, you are no longer foreigners and strangers, but fellow citizens with God’s people and also members of his household. 

Ephesians 2:19 (NIV)

Our Day Trip to Rathlin Island

Our Day Trip to Rathlin Island

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People say that Ireland is a beautiful country and if you could rely on the weather you would never holiday anywhere else. I agree entirely.

Our eldest has been trying to get us on a family trip to Rathlin Island  for the last couple of years, but any time that we planned to go the weather forecast dissuaded us. Rathlin Island lies just six miles north of the seaside town of Ballycastle in Co Antrim. It is also only fourteen miles from the Mull of Kintyre in Scotland.

Finally this past weekend we agreed on a date, checked and rechecked the forecast, packed the obligatory picnic and off we headed. We phoned that morning to book places on the ferry and to check the parking arrangements in Ballycastle. We were assured that there was plenty of free parking nearby, although finding an actual parking space when we got there proved a little challenging.

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The ferry that took us over was quite comfortable and provided shelter from the elements. We enjoyed sitting together out on deck and admiring the panoramic views across the Sea of Moyle.

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Although I was raised in Cork City, which is at the opposite end of Ireland, I’m familiar with some of the folklore associated with this area, especially the sad tale of the Children of Lir. Indeed I can still recite part of Thomas Moore’s Song for Fionnuala  which I learned at school:

Silent, oh Moyle, be the roar of thy water,


Break not, ye breezes, your chain of repose,


While, murmuring mournfully, Lir’s lonely daughter
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Tells to the night-star her tale of woes.


When shall the swan, her death-note singing,


Sleep, with wings in darkness furl’d?


When will heav’n, its sweet bell ringing,


Call my spirit from this stormy world?

On our arrival at this beautiful Island, I was surprised to see how many people use cars to get about. Lots of people were using bicycles too, these are available for hire on the Island. There is a bus service on the Island also. This is the only inhabited island off the north coast of Ireland. It is an unusually shaped isle – eight miles long and less than a mile wide. The resident population of the Island averages approximately 140 and growing. We had already decided that we were going to walk – at a leisurely pace – for our sightseeing visit.

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Our first stop was the beach – the blend of white and grey stones is very eye catching. Ireland is normally referred to as having ‘forty shades of green’ but this was more like ‘forty shades of white’. This is apparently due to a mixture of limestone and basalt.

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Our son amused himself intermittently by using the Pokémon Go app on his phone. He was amazed at how many PokeStops there are on this tiny island.

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Our youngest daughter is very interested in photography. There was much that caught her eye and inspired her to capture it on camera, as we walked around the island.

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After our picnic lunch at Mill Bay we headed on the Rathlin Trail round past the lakes to the Rue lighthouse. It warmed my heart to see our children enjoying each other’s company, away from the stresses and strains of everyday life.

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We stopped periodically to appreciate the amazing views.

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Eventually all the walking became too much for the youngest member of our family and she staged a sit down protest. She had to have a little rest before she was able for more trekking.

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For me the highlight of our trip was when we arrived at Ushet Port and saw dozens of seals basking on the rocks. They seemed to really enjoy having an audience. We were careful not to go too close though, so as not to disturb them.

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It was only a short walk from there to the Rue Lighthouse, one of three lighthouses on the Island. This instantly brought to mind the lyrics of one of Leah’s favourite songs, My Lighthouse by Rend Collective:

In my wrestling and in my doubts


In my failures You won’t walk out


Your great love will lead me through


You are the peace in my troubled sea,

oh oh
 You are the peace in my troubled sea

In the silence, You won’t let go


In the questions, Your truth will hold


Your great love will lead me through


You are the peace in my troubled sea,

oh oh
You are the peace in my troubled sea

My Lighthouse, my lighthouse


Shining in the darkness, I will follow You


My Lighthouse, my lighthouse (oh oh)


I will trust the promise,
You will carry me safe to shore

(Oh-oh-oh-oh-oh)
Safe to shore (Oh-oh-oh-oh-oh)


Safe to shore (Oh-oh-oh-oh-oh)
Safe to shore

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We strolled back at a leisurely pace, stopping regularly to enjoy the beautiful scenery. We also called into the Boathouse Visitor Information Centre, where we received a very warm welcome.

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One of the many things that I reflected upon as we walked along were the Katie Morag Stories by Mairi Hedderwick, which I spent many hours reading to the children when they were young. Rathlin Island is quite like how I imagined the fictional island of Struay to be from reading these beautiful books to the children.

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The ferry that took us back to Ballycastle was a slower and more basic version of the boat that we had travelled across in earlier. This ride was definitely bumpier and we were very glad of our hooded jackets as they provided us with some protection from the salty waves that periodically crashed over the side!

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Getting a full nights sleep on a regular basis has proved challenging since Leah died, but that night after our family day trip to Rathlin Island I got eight hours of restful unbroken sleep and I awoke the next morning feeling very refreshed.

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 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 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.

 

Operation Beautiful~One Note At A Time

Operation Beautiful~One Note At A Time

Tomorrow I’m leading Children’s Church – something I seldom volunteer for since Leah died. This morning I was scouring the house for our  Veggietales  DVD collection to use one of them in Children’s Church, when it occurred to me that some of them might be in Leah’s bedroom. As I was searching through Leah’s possessions, I found myself lingering, reminiscing, and grieving.

Sometimes people ask me whether it gets easier as time goes on? I’m not sure if the pain of child loss ever gets any less. What has changed as time goes on is my ability to deal with the pain. I’m gradually learning some coping strategies that enable me to live with the pain of child loss, so that I can, by God’s grace, live a relatively normal life most of the time.

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There are some of Leah’s belongings that I haven’t looked through at all since she died. Today, while going through a few of those, I came across a booklet that she had received at  Girl’s Brigade called ‘Spiritual Sparkles‘.

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I know that being a part of Girl’s Brigade was really important to Leah and that she would probably have read this booklet from cover to cover. I found myself glancing through it as I thought about my daughter. My attention was suddenly gripped by this page:

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The ‘secret post-iter‘! That’s where she got the idea from! Leah was well known for writing encouraging notes on post-its and leaving them for others to read. In March 2013 Leah introduced this concept at the LOST outreach weekend for young people in Limavady.

Before we left Sam’s House in Bristol in October 2013, I was dispatched to the shops to buy her a packet of post-it notes. Afterwards one of our friends posted this on Facebook:

Sams House Post It (1)

After Leah died our eldest daughter Rachel showed me this post-it that Leah had stuck on her bedroom mirror:

Rachel's Post It

Leah also had lots of post-its stuck up around her own bedroom to encourage her as she recovered from her bone marrow transplant and battled GvHD (graft vs host disease). She struggled with the very unpleasant side-effects of high dose steroid therapy and chemotherapy hair loss and she needed all the encouragement she could find:

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I miss Leah’s little notes; every time I do a clear out I find some little card or note of encouragement that I received from her over the years. I cry for what I have lost, I thank God for what I have had and I carefully place each note or card in a Memory Box.

I think the idea behind Operation Beautiful  is really worthwhile. Their website explains their purpose:

The mission of Operation Beautiful is to post anonymous notes in public places for other people to find. The point is that WE ARE ALL BEAUTIFUL. You are enough… just the way you are!

I know that Leah was very concerned about the many negative messages that young people are getting and the effect that this is having on their self image and their self esteem. I can see why this simple concept would have really appealed to her. I think that it’s a lovely idea.

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

 

Sympathy Cards

Sympathy Cards

After a loved one dies there are some tasks that have to be attended to right away, such as registering the death, choosing a coffin, planning the funeral service, hosting a wake, – some of these depend on one’s cultural and religious traditions of course. With other tasks there is more choice and flexibility as to when we tackle them, such as sorting through a loved ones belongings and personal effects. This is very much an individual decision and the ‘right time’ varies greatly from person to person. For us it was important that Leah’s cousins and friends could have ‘a little piece of Leah’ so from quite early on we gave away some of her personal possessions.

However, it was only last week that I found myself able to clear out the drawer that contained all of her medication. There was a part of me that still couldn’t believe that Leah had ever become so ill – it just seemed like a bad dream. I would periodically open her medication drawer and stare in disbelief at its contents – had this really become part of the story of Leah’s life? Last Saturday I finally took all of her injections and tablets to our local pharmacy for safe disposal.

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However all of Leah’s GCSE coursework still remains untouched underneath her desk.

Today I tackled a task that I had known for quite some time needed to be addressed, but I just could not find the emotional energy to do so. Since shortly after Leah died, two of the three shelves in the bookcase in our Family Room have been completely occupied by two large baskets overflowing with sympathy cards, two books of condolences, Leah’s death certificate and other similar items.

For weeks after Leah died, the postman arrived every day with a stack of cards, held together by an elastic band. It seems like everybody we had ever met, from our childhood to the present day, took time out of their busy lives to write and let us know how much they cared about the passing of our beloved daughter. We even received some beautiful cards and heartfelt messages from people whom we had never met but who had heard of our sad loss. The owners of the local pub (which we did not frequent) took up a collection from their customers in Leah’s memory and a card came from them containing a gift of £220 for the Children’s Hospice. The kindness and thoughtfulness of friends and strangers meant so much to us in our devastation.

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We received cards from Christians, Muslims and atheists, from people with a deep faith and people with no faith, but each one was beautifully written with words that came straight from the heart. We received thoughtfully written cards from politicians on both sides of the political divide and even a few beautifully crafted handmade cards. Some of the most touching messages to read were those written by teachers who had taught Leah at school.

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I had no idea that there were so many beautiful sympathy cards out there and I was very touched by the efforts that people went to in choosing them and in thinking of what to write. Some people enclosed handwritten letters with carefully chosen words, others underlined the words on the cards that they had so thoughtfully chosen for us. Some of you never sent your cards, I know that because when I met you in the street you said things like “I have a card for you sitting on my kitchen table, but……” and I finished the sentence for you by suggesting “but you don’t know what to write?” You looked relieved when I offered this explanation and I asked for a hug instead.

Today I went through every item, read it, appreciated the love with which each card was sent to us and then put them all away into a large storage box.

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I consulted with my youngest daughter as to what should occupy these two shelves in the Family Room instead. She suggested that we put each child’s Baby Book and their baby photo albums there, so that when we are together as a family we can remember the many happy times that we have all shared over the years. That is what so many of your cards have urged us to do ~ treasure the memories.

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This was a poem that we received from the Children’s Hospice. I especially like the lines:

Cherish all the memories 

But don’t let time stand still

Although we cherish our memories greatly from when Leah was with us, time does not stand still and we have to live on and make new memories too.