Duke of Edinburgh Award

Duke of Edinburgh Award

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Rachel called into Limavady High School  one day and brought home Leah’s Bronze Duke of Edinburgh Award badge and certificate. Leah had started working towards her Silver Award but had to give up in February 2013 due to her illness.

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I remember Leah being very upset and tearful about not being able to continue working towards her Silver Award. Her older sister had completed hers right up to Gold.

Papa – What Is It Like To Die?

Papa – What Is It Like To Die?

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A true story that I have always found incredibly inspiring is The Hiding Place by Corrie Ten Boom. I have read the book and watched the film several times.

One of the now well known sayings that Betsie said to Corrie while in Ravensbruck was “There is no pit so deep that He is not deeper still.” This saying and the truth of it has been very meaningful to me throughout Leah’s illness and death.

Before Leah and I went to Bristol we bought the DVD of Hiding Place and took it with us. We sat and watched it together while in isolation in the transplant unit in Bristol Children’s Hospital. Corrie’s story seemed more meaningful than ever. Here’s another excerpt that has blessed me:

Papa – What Is It Like To Die?

When given the news of her father’s death, Corrie pictured in her mind one of the times where her father’s faith and wisdom gave her great peace.
When he was tucking her into bed one night, Corrie asked: “Papa, what is it like to die?”
Papa Ten Boom did not look away from her, but held his gaze into her eyes. “When we go to Amsterdam, when do I give you your ticket?”
Corrie considered this well before answering. “Just before we get on the train.”
Still holding his steady gaze, he said to her: “When the time comes, your Heavenly Father will give you all the strength you need.”

Truly when the time came, Leah was also given all of the strength she needed, to die with grace and dignity.

We have to see the bigger picture

We have to see the bigger picture

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On the 4th March 1969 Horace’s older brother David had his 15th birthday and became seriously unwell. This resulted in him having an appendicectomy and being diagnosed with a “progressive malignant tumour“. David was subsequently admitted to St Luke’s Hospital in Dublin and prayer was going up for his healing all over the world. Someone said “heaven is stormed with prayer”. Horace’s mother Charlotte stayed up in Dublin to be with David.

On the 17th July 1969 Horace’s mum read to David from Psalm 65, they prayed together and then he kissed her goodnight. At 5am the next morning David went to be with Jesus.

Charlotte said that “although grief-stricken, a great peace passed over me, the Peace that passeth all understanding – God had taken him home and now he was free from all his pain.”

Two years later Charlotte developed breast cancer. She went to be with Jesus on the 16th December 1982. Thankfully Charlotte wrote about some of these experiences in a little booklet that she called “Stepping Stones“. I have read and reread this booklet many times over the years. Leah also found it comforting to read. During Leah’s illness I took to carrying a copy in my handbag.

On Saturday 11th January ’14, for the first time since Leah’s admission to ICU the doctor told me that Leah’s chest X-ray showed a slight improvement. They had been telling me all along that Leah was unlikely to recover, but there were thousands of people all over the world praying for healing for Leah and I was hopeful. When I heard this positive news about Leah’s chest X-ray I was so sure that this was the miracle starting to happen and I was so happy – our little girl was getting better – she was going to live.

The next day when I went in to see Leah her condition had worsened and my heart sank. That evening I sat by Leah’s bedside, held her hand and reread Charlotte’s wee book. I read how heaven was stormed with prayer for healing for Horace’s brother David, but yet God chose to take him. I read these words written by Horace’s mother “This has cost me a lot to write but I believe it is what my Father wants me to do, hoping that it will help someone. By the way those four and a half months taught me many things. David and I grew very dear to each other. God is not only our Father, He is also a wonderful teacher and trusting in Him all must be well.”

There as I held Leah’s hand and listened to the swish of the ventilator pushing air into her lungs I silently prayed and asked God an almost rhetorical question “Lord, you aren’t going to heal Leah are you?

The next day the deterioration in Leah’s medical condition continued. At midday Leah had to be anaesthetised to conserve her oxygen levels. My sister in law Hannah unexpectedly paid me a visit. As we sat talking outside ICU Hannah looked me in the eye and said “What’s your gut feeling about Leah?” In that moment I had to face the truth. I whispered the words “I think Leah’s going to die.” Hannah put her arms around me and prayed with me.

This wasn’t me admitting defeat or giving up – this was a moment of acceptance. This was the moment when I moved from giving Leah the best possible quality of life, to being able to ensure that Leah had the best possible end of life care. I thank God for everyone He sent to help us along the way.

When Leah was diagnosed she said “God has a plan for my life” and “we have to see the bigger picture” – I think that “bigger picture” was bigger than even she could ever have realised.

She carved her name on our hearts

She carved her name on our hearts

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I went into Leah’s bedroom today and turned over her both her calendars and they are each so true – Leah carved her name on our hearts and she died full of faith and assurance of having her sins forgiven and a place in heaven………

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Graham Norton – a Rend Collective fan?

Graham Norton – a Rend Collective fan?

What is the world coming to – I never expected this Corkonian to be playing Rend Collective?

Here’s the full length version of ‘My Lighthouse’ from Leah’s favourite band, this was played by “Under Construction” at her funeral, as Leah’s coffin was being carried out of the church.

How could we ever have let her die in an “unplanned” kind of a way

How could we ever have let her die in an “unplanned” kind of a way

Today I was in town and found myself with a bit of unexpected spare time, so on a sudden impulse I headed into the Health Center and climbed the two sets of stairs to my work place – somewhere that I hadn’t visited since July ’13 before going to Bristol for Leah’s bone marrow transplant.

There wasn’t many in the office but it was absolutely lovely to see and chat to some of my work colleagues. It reminded me of a world beyond my grief.

Something else very nice happened while I was in at work – I unexpectedly got to see and hug Dr H, the specialist in paediatric palliative care who enabled Leah’s transfer from ICU to the N.I. Children’s Hospice.

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On Monday 13th January 2014 I finally accepted that Leah was not getting the miracle of healing that so very many of us were hoping and praying for.

I asked the staff in Belfast City Hospital what our options were for Leah’s end of life care – apparently we didn’t have any options, she would die in ICU.

I said that I didn’t want her dying in a critical care environment and that I wanted to take her home or to the N.I. Children’s Hospice but I was told that neither was possible.

I was distraught on two counts – one because my child was dying and two because I felt that I was being denied the option of planning a peaceful and dignified death for my child, surrounded by those who loved her.

As a student nurse in the early ’80s I formed quite strong views in favour of hospice care. I also at that time read TO LIVE UNTIL WE SAY GOOD BYE by Elizabeth Kubler Ross. The writings of Elizabeth Kubler Ross introduced me to the concept of ‘end of life care’ and confirmed my thinking that end of life care should, wherever possible, be planned and dignified, both for the benefit of the person dying and also for those who will be left to grieve.

On Tuesday 14th January, through my own personal work contacts I was put in touch with Dr H. She immediately offered to drive the 140 mile round trip to BCH to convince the staff there that we as a family did have options, that it was indeed possible and safe for Leah to be transferred to the N.I. Children’s Hospice when the time was right.

Dr H knew how this could be arranged and she had all the names and phone numbers of those who needed to be contacted so that it could be arranged.

Once Dr H had outlined to the staff at BCH what was possible, all the pieces of the jigsaw started falling into place. From that moment on, the staff in BCH did everything they could to support our choice and to make it happen.

The particular doctor from the Royal who normally did  transfers to the hospice was not available on Thursday 16th January when we needed him, but the lovely ICU doctor from Cork volunteered to give up his morning off to come with us.

One of our favourite nurses said she would come too. By Thursday morning Leah was too ill to survive being changed over to the portable ventilator, so the Cork Dr calmly said that we would just bring the big ICU ventilator with us – it was apparently unheard of for a patient to leave ICU on anything other than a portable ventilator.

When the emergency ambulance arrived to take us to the Hospice they could see straight away that Leah and all of her medical equipment wouldn’t fit in their ambulance – without any fuss they ordered a bigger patient transport ambulance to come.

Leah, the medical staff and myself all traveled in the transport ambulance while the emergency ambulance blue-lighted us across Belfast.

Normally during the day in her room in ICU Leah’s Spotify playlist played continuously on her iPad. At night I asked the nurses to keep the music off to help Leah differentiate between day and night, as that distinction isn’t obvious in an ICU environment.

On her last night in ICU Leah was being looked after by a lovely nurse who belonged to a church in Ballymena. I asked her to play Leah’s Christian music during the night because this was to be her last night on earth. I was in and out during the night but I did manage to sleep a couple of hours in my room in the Cancer Centre.

When I returned in the early morning the nurse told me that she had picked out the best songs for Leah to listen to and then added “I sang to her too” – my heart just melted when she told me this.

Then I turned over Leah’s own desk calendar onto that days date and read the verse for that day which was 1 Corinthians 14:40Let all things be done decently and in order“. Leah was very much a “planner” – she loved to be organised and wrote lists for everything – how could we ever have let her die in an “unplanned” kind of a way?

Through my tears I uttered a quiet “thank you Lord, I truly know that Your hand is upon us this day“.

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When we arrived at the hospice there was approximately 35 family and very close friends of all ages waiting to welcome us.

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The medical staff settled Leah into her very pretty room with her name on the door. Then friends and family had time to say goodbye. The Hospice staff introduced themselves to us, then remained discretely in the background, always ready when we needed them.

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It was like a big family get together albeit a very sad one. Leah absolutely loved big family get togethers.

Children who didn’t want to be in Leah’s room all the time, had access to a games room, hospice staff had an oversight to all that was going on.

After Leah had died in a peaceful and dignified manner, the hospice staff provided lunch for everyone – there was no need for anyone to rush away – everyone was able to deal with the situation at their own pace and the hospice staff were always on hand to provide support when needed.

We had prayed for a miracle of healing – we didn’t get that miracle – but the beautiful way in which Leah was able to die, was in itself a miracle and for that – through tears of grief and sadness – I am very thankful.