Sometimes there is no other way

Sometimes there is no other way

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Sometimes I don’t blog because I’m generally busy getting on with life and I either don’t have much to say or I don’t have the time to say it! Other times I don’t blog because I’m feeling very sad and I’m tired of writing sad posts. Then I think; what the heck – this is my blog and I’ll cry if I want to – people can choose not to read it if they don’t like it.

This past summer was mostly good. The day of the A and AS level exam results in August was both happy and sad. Our son did fantastically well but I was also acutely aware that Leah wasn’t here to get any exam results. I went to the school with our son to get his AS results and I congratulated Leah’s friends on their excellent A level results. I was very grateful to the one parent at the school who acknowledged my grief and loss with a hug, in the midst of receiving her son’s amazing A level results.

While our son posed for a photo for the local papers with others who had received excellent results, I sat in the car in a quiet corner of the school car park sobbing. By the time he texted looking for me to come and collect him, I had regained my composure. Results day needed to be about his success, not about my sadness.

This past week Prize Day took place in both the school that Leah attended and the school that Simon now attends. We attended Simon’s prize giving event as proud parents. However I hadn’t really thought about the possibility that some of Leah’s peers would also be there receiving their prizes before departing for university. One of these was the very girl who started Nursery School alongside Leah many years ago – they walked through the door of the Nursery class together that first morning. So much has changed since then. This triggered more difficult emotions for me, which I sought to contain.

We didn’t have occasion to attend Prize Giving at the High School this year, but a kind friend gave me her copy of the programme. In the Prize Day programmes for both schools there is a section that lists which universities this year’s A level students have moved on to. I scrutinised this section in both programmes, but naturally Leah’s name isn’t mentioned. This time three years ago while in hospital in Bristol, Leah talked to me of her future career plans, but that clearly was not meant to be. Leah’s name is mentioned in another part of the programme though, where she continues to make us proud. I was so pleased to read the names of this years’ recipients of the award created in her memory:

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I try hard to live in the present, to count my blessings, to be grateful for what I have, to focus my thoughts on the good things in my life and the people that I love, but despite it all, grief and loss at times becomes overwhelming. Sometimes no matter how hard I pray and look to God for the strength to go on, no matter how much I read my Bible or how many Bible teaching podcasts I listen to, the sadness just doesn’t go away and those tears have to be shed – there is no other way.

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Child Cancer Awareness Month 2016

Child Cancer Awareness Month 2016

Be Aware

I have been acutely aware since waking up this morning that today is the 1st of September – the start of Childhood Cancer Awareness Month. I wish that I wasn’t Child Cancer Aware – not to the extent that I am now anyway. I wish that I could just roll back my life to a time four years ago when (despite my nursing qualifications) my knowledge of childhood cancer was almost non existent. Yes of course it’s important to be Childhood Cancer Aware but I wish that this was mere ‘head knowledge’ and not ‘heart knowledge’.

My ‘awareness’ of childhood cancer causes me to feel deep sadness and fight back tears every. single. day. The least wee thing can trigger this – a product display in the grocery store, a casual comment from a friend or work colleague, a memory that suddenly pops into my head.

This time three years ago Leah and I were in Bristol Children’s Hospital. The previous week Leah had been transferred out of her isolation cubicle on the Bone Marrow Transplant Unit to a beautiful ensuite room on their amazing purpose built Adolescent Unit. We had also been told the most fantastic news ever, which was that Leah’s bone marrow transplant had been successful and that she was fully engrafted. We were ecstatic. It was now going to be onwards and upwards, or so we thought.

Leah was allowed off the ward for short periods of time, so on the 2nd of September we very cheekily had a sneaky trip to the local Costa – this was strictly forbidden as Leah’s immune system was still very fragile.

Leah at Costa

Sadly our euphoria was short lived, as over the following weeks and months, side effect after side effect from the harsh treatments that she had experienced began to ravage Leah’s body, until finally – five months post transplant – these side effects also claimed her life. The cure proved as destructive as the disease.

Devastatingly, this is the reality of childhood cancer.

 

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.