Back to Reality

Back to Reality

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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.

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

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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:

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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.

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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.

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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.

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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.

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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.

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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!

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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.

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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.

Our God in Whom we Trust

Our God in Whom we Trust

It was on the last Thursday of June 2013 that Dr C phoned from Bristol to tell us the results of Leah’s gene sequencing. They had just discovered that her myelodysplasia and monosomy 7 had been caused by a GATA2 genetic mutation. This was not good news for several reasons. I have discussed this in detail in my blog post Gata2 Genetic Mutation
This genetic defect worsened her prognosis. The bone marrow transplant could eradicate Leah’s myelodysplasia, but no medical treatment could ‘fix’ the defect in her DNA. The long term implications of this weren’t entirely clear though as GATA2 mutations are a fairly recent discovery and research is ongoing.
The following day our lovely Belfast consultant phoned me. In his gentle Armagh accent he asked me how we were coping with this latest turn of events – I told him two things. I said that firstly we had the utmost confidence in the skill and dedication of both himself and our Bristol consultant and therefore we knew that Leah was in good hands. Secondly I told him that our God in whom we trusted would give us the strength to deal with whatever lay before us.
Prophetic words indeed………

Grief – the pain that goes on hurting

Grief – the pain that goes on hurting

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Growing up I had two ambitions – to marry and have kids and to become a nurse and work with children.

I always adored kids and had babysitting jobs from my early teens. My nursing training took me in the direction of working with adults and it wasn’t until 2004 that I “remembered” that I really wanted to work with children so I went to work in a pre-school for children with Special Needs which I really enjoyed.

By then I was married with four children and my family were my life.
My goal in life was to put God first, my children and husband second, then everything else after that.

By 2012 I had got the job that I really wanted – working as a part-time Family Support Worker on the Health Visiting Team. I love babies and small children, I love supporting parents and I loved being back in the Health Service.

I used to wonder if it was ‘normal’ to enjoy one’s job so much. Life was good.

When Leah began having investigations and regular appointments at the start of January 2013, the flexibility of my working hours meant that I could tweak my work commitments, so as to always be there for Leah without ever needing to take time off my work.

My work was my “holy grail” and surely if I could keep that normal then everything else could be normal too.

The next working day after receiving the news of Leah’s awful diagnosis I worked a full morning of Home Visits before informing my manager of what we had been told regarding our daughter. She naturally questioned whether I should be at my work, but I insisted on continuing to come to work – my job was my means of staying sane – or so I thought.

Sadly, 10 days later, it was obvious to both me and to everyone else that I couldn’t combine the demands of caring for Leah and coming to my work.

I found it very distressing for a while to not have the ‘escape’ of going into work. I found it emotionally difficult to always be on the receiving end of the Health Service instead of the giving end – I felt at times terribly vulnerable.

Now it’s been over a year since I last went to work. My employers have been kind to me. My manager and my work colleagues have been incredibly supportive.

A goal has been set for my return to part-time work for the 1st September 2014. I know that the ‘me’ that will return that day will not be the ‘me’ that left in May 2013. I feel like a bird with a broken wing and wonder how it’s possible that I can ever fly again.

I have to continue day by day trusting that God will give me the strength that I need. This morning I was listening to ‘Sovereign‘ by Chris Tomlin and I noticed these words:

Sovereign in my greatest joy
Sovereign in my deepest cry
With me in the dark
With me at the dawn

In your everlasting arms
All the pieces of my life
From beginning to the end
I can trust you

In your never failing love
You work everything for good
God whatever comes my way
I will trust you”

Every day is a challenge – the pain of my loss is like nothing I’ve ever before experienced.

Grief is a pain that just goes on hurting.

Throughout Leah’s illness and death I’ve never felt a need to ask ‘Why?’ 

When Leah was diagnosed one of the Bible verses that immediately came to my mind was

Job 2:10 (MSG)
‘He told her, “You’re talking like an empty-headed fool. We take the good days from God—why not also the bad days?”
Not once through all this did Job sin. He said nothing against God.’

Since Leah’s death my only question has been “How?” – “How is it possible to ever go on living without one of my children?”

More lyrics from ‘Sovereign’ –

All my hopes
All I need
Held in your hands

All my life
All of me
Held in your hands

All my fears
All my dreams
Held in your hands

All my hopes
All I need
Held in your hands

All my life
All of me
Held in your hands

All my fears
All my dreams
Held in your hands

In your everlasting arms
All the pieces of my life
From beginning to the end
I can trust you’

The Loss of Innocence

The Loss of Innocence

Another stage on this journey that I couldn’t post about while Leah was alive was the harvesting of her eggs from her ovaries in June 2013 – a procedure that was intensive, invasive, exhausting and painful and one that tore at my heart as her mother.

As soon as Leah heard that the chemotherapy cocktail she was to receive would leave her infertile she wanted to know how her fertility could be preserved.

Anyone who knows Leah knows that she adored babies and children. At her request she was referred to the Regional Fertility Clinic in Belfast and we were subsequently told that she was the first woman in Northern Ireland to have her eggs harvested (cryopreservation) on the NHS, as well as one of the youngest in the U.K..

It was a process similar to IVF and Leah had to give herself two hormone injections per day for around 10 days and attend the RFC at the Royal in Belfast on alternate days during this time for scans of her ovaries. This necessitated a 140 mile round trip each visit.

We spent up to 3hrs in the Waiting Room of the Fertility Clinic waiting on blood results on the days we attended, interspersed with trips over to the main hospital for an ice-pop – Leah loved ice cream.

We must have looked a strange sight – a menopausal women and a young teenage girl – surrounded by anxious couples holding hands, desperately hoping that medical intervention would enable them to produce a beautiful little baby.

We never communicated with any of these couples nor they with us – we didn’t belong in their world and they didn’t belong in ours.

We looked for the quietest corner of the waiting area and Leah used this time to study for her GCSE maths module exam on the 11th June (in which she achieved 100%).

I marvelled at Leah’s calmness and composure and her ability to focus.

I remained calm on the outside for her sake, but inside my heart was breaking, because my daughter was having to grow up so fast and deal with so much.

The days that we didn’t have hospital appointments I spent prolonged periods of time reading my Bible and praying and seeking God for the strength to become the Mum that Leah needed me to be.

Eventually on Wednesday 5th June 2013 the day came for Leah’s eggs to be harvested under deep sedation, but the anaesthetist was nervous about Leah’s low blood counts. What should have been a 2 – 3 hr hospital visit turned into an all day stay, with the consultant wanting to admit Leah overnight for observation and Leah insisting on going home.

Leah was taken to the operating theatre in the Maternity Suite. I sat quietly in the Waiting Area, alongside relatives of women having babies.

When the procedure was finished the doctor came out and cheerfully called over to me “Everything went very well.

As soon as the Dr disappeared, some grandparents sitting nearby beamed at me and cheerfully said “congratulations“. I took a deep breath and replied “It’s not what you think” and explained our situation as best I could. The woman took it not so bad but I could see that the man was really struggling with what he was hearing.

Leah had 22 eggs harvested from her ovaries, 18 of which were described as being of “good quality”. The staff were all amazed at such a good result. We had to sign a form to say that if Leah died then her eggs would be destroyed.

Leah wasn’t allowed to take the stronger pain relief normally used in those circumstances due to her low blood counts. She had quite severe abdominal pain for several days afterwards as her body gradually returned to normal.

The painkillers that she was given made her vomit and caused gastritis. Her greatest ease came from a hot water bottle.

On Friday 7th June Leah took part in the Presbyterian General Assembly Youth Night in the Waterside Theatre as part of the LOST team.

I’m sure very few if any of the people there knew how unwell she was feeling, but it was so important to Leah to be able to honour all her commitments, especially those connected with her Christian faith.

This photo was not taken that night but at a previous L.O.S.T. event that Leah took part in.
This photo was not taken that night but at a previous L.O.S.T. event that Leah took part in.

The staff who attended to Leah at the Regional Fertility Clinic were absolutely lovely and the Dr there told me since that she was “so impressed with Leah’s strength and maturity in dealing with her situation“.

I am so proud of Leah but I know that she herself would not want to take the credit for her strength, but would say that the secret of her strength was in her daily walk with God.

During the times this past year when Leah was too weak and ill to lift the Bible to read or to pray she always ensured that I – or Nic, her boyfriend – read to her and prayed with her.

2 Corinthians 12:9
‘Each time He said, “My grace is all you need. My power works best in weakness.” So now I am glad to boast about my weaknesses, so that the power of Christ can work through me.’

Another song that Leah and I liked was

Your grace is enough” by Chris Tomlin