The Struggle

Two weeks ago I added ‘studying’ and ‘work placement’ to my already rather full schedule. Since then I have really struggled emotionally. My emotions are screaming at me to give up, that this was a crazy idea. My head is simultaneously reminding me that this is a door that God has opened for me and that I went into this really believing that it’s what I’m meant to be doing. To be fair, it’s only for three months – how hard can that be?

For the past year I’ve worked only three days per week and the other two days have given me space to grieve. Without that space right now I’m struggling – big time. Work isn’t the problem – I love my job, it’s everything else that I’ve added on, albeit temporarily.

Add to that the fact that this time two years ago was when Leah’s illness really took a turn for the worse. The last weekend in September 2013 started off well. Leah was looking forward to a planned meeting on the Monday with our lovely consultant, at which we had been promised that we would be given a date for booking our flights back home to Ireland.

Leah’s boyfriend Nic had flown over to spend the weekend with us. This meant that I had some time to myself – a rare occurrence – I had spent it cleaning and bleaching with another oncology Mummy, getting a house ready for her and her little boy to spend a few hours outside the confines of the Bone Marrow Transplant Unit. She’s Irish too and we had enjoyed the ‘craic’ together. Devastatingly, her gorgeous son Caiden died in similar circumstances to Leah in October 2014.

Then, on the Sunday night, Leah told me that she was passing blood in her urine. So, on Monday, instead of our consultant giving us the dates for booking our flights home, he readmitted us to the Bone Marrow Transplant Unit.  Leah went on to develop a new complication every month until the one at Christmas/New Year that finally claimed her life.

I’ve cried a lot today, whilst wishing that I could use the time to focus on the E-learning that I’m supposed to be doing for this training course. I’ve really found that ‘time management‘ is not one of my strengths since Leah became ill and died.

Then on a shelf in my room I spied a book that I bought recently but hadn’t had time to read. It’s called “When the Hurt Runs Deep” by Kay Arthur. I heard Kay Arthur speak live a few years ago and I loved her energetic style of Bible teaching. She devised the Precepts Bible Study method, I was a regular attender at a local Precepts Bible Study until Leah became ill.

I started reading her book today. On page 73 Kay quotes Psalm 139:13:

Psalm 139:13 (AMP)

For You formed my innermost parts;
You knit me [together] in my mother’s womb.

Kay says that God knows the exact sperm and the precise egg that comes together to make us who we are. This stopped me in my tracks. Leah was conceived while we were having investigations for secondary infertility. Every month we longed and prayed that I would get pregnant. I went for prayer via the “laying on of hands” from those whom God has gifted in the healing ministry. Yet, God in His sovereignty allowed Leah to be conceived with either an egg or a sperm containing a mutated gene that would one day lead to her receiving a diagnosis of myelodysplasia with monosomy 7 caused by a GATA2 deficiency.

Then on page 77 of Kay’s book, I read a passage of Scripture that Leah and I used to read frequently. It brought us such great comfort. Leah’s illness separated us at times from most of what we held dear in life, so we tried to focus on the one certainty that her illness could never deprive us of – God’s love.  

Romans 8:35-39 (NKJV)

³⁵ Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword? ³⁶ As it is written:

“For Your sake we are killed all day long;
We are accounted as sheep for the slaughter.”

³⁷ Yet in all these things we are more than conquerors through Him who loved us. ³⁸ For I am persuaded that neither death nor life, nor angels nor principalities nor powers, nor things present nor things to come, ³⁹ nor height nor depth, nor any other created thing, shall be able to separate us from the love of God which is in Christ Jesus our Lord.

Then Kay Arthur writes “No hurt is so strong that it can separate you from His love. Your hurt is not intended to drive you from God but to God.“

Kay’s words remind me once again of the true source of my strength, of the only way that I’ve made it through the past two and a half years – by trusting God and leaning on Him. It isn’t easy and it’s not going to be easy but I just have to keep on going.

Just as the Israelites were told in Exodus 16 to gather the manna (heavenly bread) daily, so I also need to meet with God on a daily basis so that my soul receives the nourishment that it needs to survive and hopefully even to thrive.

Or, to once again quote from my favourite worship singer/songwriter Matt Redman, I must abide in Him:

Abide With Me

I have a home
Eternal home
But for now I walk this broken world
You walked it first
You know our pain
But You show hope can rise again up from the grave

CHORUS
Abide with me
Abide with me
Don’t let me fall
And don’t let go
Walk with me
And never leave
Ever close God abide with me

VERSE
There in the night
Gethsemane
Before the cross
Before the nails
Overwhelmed
Alone You prayed
You met us in our suffering and bore our shame

BRIDGE
O love that will not ever let me go
Love that will not ever let me go
You never let me go
Love that will not ever let me go

VERSE
And up ahead
Eternity
We’ll weep no more and sing for joy
Abide with me
We’ll weep no more and sing for joy
Abide with me

Safe in my Father’s House

Leah was an avid reader. Her earliest favourite books were a series by Usborne Books, where she had to locate a tiny duck hiding on every page. Leah loved ducks.

Other favourites that soon followed, were the Spot Books and Kipper Books. Each page was soon memorised – by both of us.

Then Leah discovered the beautiful Maisy Mouse Books by Lucy Cousins. She fell in love with these too.

After this it was Enid Blyton – by the bagful. Leah’s shelves became laden with Enid Blyton Books. I wonder if there’s even one Enid Blyton title that Leah didn’t read.

I remember many years ago, the Annual Book Fair came to her Primary School and Leah asked me for money to buy “Happy Christmas Maisy“. In my naivety, I gave her £5 to take into school the next day. A rather forlorn looking Leah returned home from school with the £5 and a note from the teacher to say that she hadn’t enough money to buy the book that she wanted.

As a parent of four children, living on a low income, with a house already full of books, the idea of spending more than £5 on yet another book seemed ridiculous to me. But Leah was desperate to become the owner of this lovely Maisy book, with it’s sparkly pages. Leah loved glitter and sparkle.

I’m not sure if Leah got the book then, or later as a Christmas gift, all I remember is how much the book was treasured and loved.

Nevertheless, “Maisy Mouse” is certainly not something that I’ve given much thought to in recent years – until yesterday.

I was heading up to Bristol Children’s Hospital, for a prearranged meeting, with some of the staff who had taken such good care of Leah and I during the 14 weeks that we spent here in 2013.

The Hospital has it’s very own Shaun the Sheep, standing outside on the pavement.

To my amazement, I discovered that this Shaun is called “Maisy and Friends” and has been designed by Lucy Cousins. I felt so emotional when I saw it.

Even though Leah had long since grown out of those Maisy books, I know that she would have loved it. I felt both happy and sad when I saw it.

When I stepped into the hospital lift to begin my ascent to the 6th floor, I was delighted to once again hear the voiceover of Wallace telling Gromit which floor we were on, every time the lift stopped. Despite the fact that Leah and I spent 14 weeks here, we never tired of this enjoyable distraction every time we travelled in the relevant lift.

Once I entered the waiting area for Oncology Day Beds my emotions became overwhelming. There was another family waiting there and I didn’t want them to see me crying. They looked like newbies. I didn’t want to upset them and steal their hope. I looked around and spied the water cooler, so I busied myself with consuming cups of water.

Then our lovely TYA (teenage and young adult) cancer nurse specialist arrived and hugged me tight, quickly followed by the two amazing consultants who cared for Leah. We spent some time together. I gave them the fifteens that I had made for them in memory of Leah. Thankfully, the fifteens had survived the journey from Ireland unscathed. They remembered how Leah used to make these sweet treats for them when we were in Bristol. You can find the recipe here.

Then I had time to chat with some of the lovely nurses on Day Beds. More hugs and then it was time to go again. They were all very generous with their time. This grieving mummy appreciated that so very much.

There was one more place that I still needed to visit, but it was going to be very emotional.  I needed the cover of darkness for this one.

At 10pm I left the girls in our hotel room and I walked once more in the direction of Bristol Children’s Hospital.

This time however, I walked on by, up St Michael’s Hill, in the direction of Sam’s House. Such a very familiar route.

In the safety of the darkness, my tears flowed. I wasn’t planning a visit to Sam’s House – I’m not ready for that yet. I certainly wouldn’t want to upset the families who are staying there, holding onto hope for their ill children.

I walked slowly past. I could see through the glass door, down the hall, to the room that belonged to Leah and I, for the duration of our stay.

My destination was just beyond Sam’s House, in the Royal Fort Gardens. Leah was immunocompromised and couldn’t go anywhere there was lots of people. She and I had enjoyed regular walks in the beautiful Royal Fort Gardens, in the evenings, when it was quiet.

We would sit on a bench and talk. She used to make me stay very still, so that she could see how near the grey squirrels would come. I write about some of the good times we had here.

There was no squirrels last night, only a very hungry looking city fox. Leah would have enjoyed that too.

I remained there a long time, in the stillness, remembering.

To help soothe my broken heart, I played ‘Abide With Me‘ by Matt Redman/Matt Maher on continuos repeat on my phone, while I sat alone in the darkness.

Yet, I wasn’t alone.

My Heavenly Father, who knows the end from the beginning, was there with me.

The words of this song gradually seeped into my soul, as I sat and wept and yearned for my second-born child.

Abide With Me

“I have a home, eternal home

But for now I walk this broken world

You walked it first, You know our pain

But You show hope can rise again up from the grave

Abide with me, Abide with me

Don’t let me fall, and don’t let go

Walk with me and never leave

Ever close, God abide with me

There in the night, Gethsemane

Before the cross, before the nails

Overwhelmed, alone You prayed

You met us in our suffering and bore our shame

Oh love that will not ever let me go

Love that will not ever let me go

You never let me go

Love that will not ever let me go

Oh You never let us go

And up ahead, eternity

We’ll weep no more, we’ll sing for joy, abide with me”

Eventually I took comfort from the fact that Leah is safe – safe in my Father’s house.

As David says in the Bible after the death of his child “I will go to him, but he will not return to me.” 2 Samuel 12:23

I walked once more around the unlit but familiar path, then headed out past Sam’s House again, back down St. Michael’s Hill, past the Children’s Hospital and back to the hotel.

The girls were still awake and I had a nice bit of time with them, before we all settled down for the night.

Abide With Me

Usually my grief triggers are something that I can clearly pinpoint, but not this evening. I unexpectedly felt an overwhelming sense of yearning for Leah and a deep longing for her presence with us.

I never saw the wave coming. We had been having quite an enjoyable Sunday. Then suddenly, out of nowhere it would seem, a tidal wave of grief crashed over me and left me gasping for air, wondering how I would ever make it back to the shores of emotional balance once more.

I try so hard to keep on top of things mentally. For most of my adult life I have practised some form of scripture meditation, where I choose an encouraging Bible verse to focus my thoughts on each day.

In Philippians 4:8 we are told “Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.”

We are also told in 2 Corinthians 10:5 “take captive every thought to make it obedient to Christ.”

All of my life I was a brilliant sleeper, until Leah died. Now I fall asleep easily, but I often wake up again three or four hours later. I lie awake for maybe an hour, before falling asleep again. I usually leave the bedroom so as not to disturb Horace and I listen to music or Bible teaching, so as to keep my thoughts from running wild. Then I fall asleep on the couch or in a spare bed.

I try really hard to take my negative thoughts “captive” and focus on the many blessings in my life, but sometimes this grief and loss and yearning for the one who is missing from our family, completely overwhelms me. Once again I wonder how it’s possible to go on living with a broken heart.

The promises in God’s word always bring me encouragement though, especially 2 Corinthians 1:4. I really hope and pray that what I learn on this journey, can be used to bring hope and encouragement to others.

One of of the ways in which I receive God’s comfort is through music. Since yesterday I have been listening to a new song by Matt Redman who is my favourite worship leader/singer/song writer. This man is so gifted, his songs just melt my heart. Leah and I both loved his music.

“Abide With Me”

I have a home
Eternal home
But for now I walk this broken world

You walked it first
You know our pain
But You show hope can rise again up from the grave

Abide with me
Abide with me
Don’t let me fall
And don’t let go

Walk with me
And never leave
Ever close God abide with me

There in the night
Gethsemane
Before the cross
Before the nails

I’m overwhelmed
Alone, You prayed
You met us in our suffering and bore our shame

Abide with me
Abide with me
Don’t let me fall
And don’t let go

Walk with me
And never leave
Ever close God abide with me

O, love that will not ever let me go
Love that will not ever let me go

You never let me go
Love that will not ever let me go

And up ahead
Eternity
We’ll weep no more and sing for joy abide with me
We’ll weep no more and sing for joy abide with me

Abide with me
Abide with me
Don’t let me fall
And don’t let go

Walk with me
And never leave
Ever close God abide with me
Ever close God abide with me
Ever close God abide with me

O, love that will not ever let me go
Love that will not ever let me go

You never let me go
Love that will not ever let me go

Love that will not ever let me go
Love that will not ever let me go

You never let me go
Love that will not ever let me go
You never let me go
Love that will not ever let me go

It’s been good to write

I recently had a long and very helpful conversation with a Christian friend who writes about her experiences as a bereaved Mummy and how God has given her the strength to cope.

One of the many things I found interesting in our conversation, is that she didn’t actually start writing until long after her children had died, whereas for me, writing has been one of my coping mechanisms.

When I mentioned this, she said something like, “I didn’t grow up in an era where it was fashionable to keep a journal.”
I laughed and replied “Well actually, neither did I.”

I’ve been scribbling in notebooks since I was thirteen.

At home, or at summer camp, I wrote.

My peers sometimes found this unusual and I was at times questioned as to what all this writing was for.

My young self had no wise words with which to answer them.

I just knew that writing was how I coped, but I couldn’t explain this.

As I got older and life got busier, I stopped writing every day and I only wrote when I was deeply troubled.

Sometimes I wrote often, sometimes I wrote infrequently.

On the day that I received the phone call informing me of Leah’s diagnosis, I knew one thing for sure, that I needed to start writing.

I started a new notebook that very day. I chose a “Project Book” – one that was divided into five sections.
Section One was kept for hospital appointments. Before every appointment, Leah and I agreed what questions she wanted me to ask and I wrote them into this notebook.

It became quite a laugh at our appointments, as the doctors and nurses would glance anxiously at my notebook, to see if we had a full page, or a half page, of questions for them to answer.

I remember on one occasion in Bristol, our favourite Doctor was on duty. Leah and I were ready for him with a full page of written questions. He good naturedly accepted the armchair that we had pulled up to the bed in anticipation of his arrival. He knew that there would be no hope of escape, until every question had been discussed.

I’m so glad now to have all of these recorded memories.

Deep distress and trauma blurs our memories and can leave blank spots.

Many times since Leah has died, I’ve poured over my notebooks, trying to piece things together, trying to make sense of it all.

Sometimes I read things that surprise me, even now.

We received Leah’s diagnosis on Friday 19th April 2013. I know that I googled it that weekend. I’m a nurse so I have some understanding of medical matters. Yet, on Tuesday the 22nd April one of my written questions was “Is this 100% curable?” How could I ever have been so naive?

When I look back now I can see how hope/faith/denial can get all jumbled up.

That’s ok.

We have to stay sane.

We have to keep hope alive.

Many times over the years, in my work with families, my colleagues and I have wondered how parents can seem oblivious to how unwell/delayed their child is, when it seems so blatantly obvious to us.

Reflecting on my own journey through Leah’s illness and reading my own journals, gives me some insight into all of this.

Sometimes the truth is so painful, that we just aren’t ready or able to take it on board.

What the doctor told us on Tuesday 22nd April was awful, but within weeks I was able to bury it and move on a little bit.

Then in June, when we had our first outpatient appointment in Bristol, the consultant there told it to us all over again. I was nearly physically sick. I didn’t want to hear it. I didn’t want to believe it.

My writings tell me something else too though.

They tell me of God’s grace and His faithfulness and the loving kindness of the many people who have blessed us along the way.

One of Leah’s and my favourite Matt Redman songs says it better than I can:

Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful
You are faithful, God, You are faithful

Scars and struggles on the way
But with joy our hearts can say
Never once did we ever walk alone
Carried by Your constant grace
Held within Your perfect peace
Never once, no, we never walk alone

The Project Book also has a pouch where I stored some of the beautiful cards and written prayers that people sent to us, along with hospital appointment cards.

I kept one entire section for encouraging Bible verses and quotations that people sent to us.

Here’s two by Rick Warren that I found written in there:

The ultimate test of faith is not how loudly you praise God in happy times but how deeply you trust Him in dark times.

Job is a book of questions, most left unanswered. The most important one is this – will you serve God no matter what happens? 

For me, I can truly say, it’s been good to write.

Let me be Singing when the Evening comes.

My baby asked for a shopping trip this week. She’s 11 and has never liked being referred to as “my baby”.

My Mum referred to me as her baby until dementia robbed her of her faculties a few years before her death in 2008. I liked this term of endearment.

Miriam and I both tried on shoes in New Look and then she tried on clothes in Primark.

She looks taller than me, but she isn’t really!

Since Leah was a toddler she absolutely loved shopping and would never have allowed us to go shopping without her.

We still find ways to include her – we went to the gardening section in one of the Pound Shops and Miriam chose some items for Leah’s grave.

On this occasion Miriam chose a solar powered butterfly and a dragonfly. She also picked a shepherds crook (with a butterfly inset), on which we can hang things, like sun catchers.

I was glad when she chose a shepherd’s crook – it reminded me of the the 23rd Psalm and the Good Shepherd.

When the shops had closed up for the night, we headed over to the cemetery to place our purchases on Leah’s grave.

I suppose there was a time when visiting a cemetery in the dark would have seemed like a scary thing to do. Not now though – how could the place where we left the body of our beloved Leah ever seem scary?

We arranged our purchases with the light from the torch on Miriam’s mobile phone. Then we talked about the view and commented on the attractive variety of solar lights/decorations on some of the nearby graves. Surprisingly, it feels quiet and peaceful in the cemetery at night.

The curvy string of lights is the Foyle Bridge across the river in the distance.

After this it was time for the obligatory trip to McDonald’s.

Inwardly I reflected on the fact that it’s two years this past week since our very first visit to Belfast City Hospital.

Two years since we left behind the familiarity of our local hospital and faced all that was new and scary and unfamiliar.

Two years since a doctor we had only just met, told us things about our daughter’s diagnosis and prognosis that no parent ever wants to hear.

His phone call the previous week had told us that Leah needed a bone marrow transplant, but by the time we’d finished our face to face meeting with him, it seemed as if it was actually a miracle that our daughter needed.

For weeks afterwards a little voice inside my head kept saying “This is too much.” and another voice would quickly respond “But He is enough – God will get you through this.”

On Tuesday the 24th April ’13, before we left the house to go to Belfast City Hospital, I posted on my Facebook page, some words from one of Matt Redman’s songs that was so special to Leah and I:

“The sun comes up, it’s a new day dawning
It’s time to sing Your song again
Whatever may pass, and whatever lies before me
Let me be singing when the evening comes”

When we arrived home that evening my heart was breaking.

I wrote underneath my earlier Facebook status that if I didn’t have God in my life to help me, I certainly wouldn’t have the strength to still be singing.

My Diaries

The other day I was listening to one of John Piper’s sermons and I was really blessed. I credit John Piper‘s teaching for having instilled within me a strong sense of the sovereignty of God which has helped me to cope with Leah’s illness and death.

In this sermon John Piper says:

There are three ways that God protects His people from danger.

1) Sometimes He prevents danger from even arising on the horizon of our lives.

2) Other times He allows the danger to attack, and gives us the victory so that we live on and serve Him in gladness.

3) But in the end one enemy is never driven off, the enemy of death. We will all die if the Lord does not return in our lifetime. But here, too, God protects. He protects us from unbelief, and preserves us for His heavenly kingdom.

Leah was in category 3 – God allowed her to suffer but protected her heart from unbelief. As she lay dying in ICU she was so peaceful and serene. Leah told her boyfriend that she wasn’t afraid to die. Although of course, she wanted to live if at all possible.

I guess that I am in category 2 – a category I would never have chosen for myself – I would have chosen category 1.

Since my early teens, one of the ways that I have used to cope with stress, is by writing in a diary or notebook. Sometimes I write almost daily, sometimes I don’t write for months at a time. It just depends on what’s happening in my life.

As soon as Leah was diagnosed, I immediately started writing. I’m so glad of this now. If I was relying on my memory, it would all just be a blur, because that’s what stress does.

I recently read through my diary entries from the early weeks immediately following Leah’s diagnosis.

We received Leah’s diagnosis on Friday 19th April ’13. On Saturday 20th April ’13 I was booked into a Ladies Christian Conference in Ballymagorry, Co Tyrone, organised by 1Vision Jesus. Leah was spending Saturday with her boyfriend so I went to the conference as planned.

The theme for the conference was “Walking in the Fire“. The speakers were Gloria Kearney and Carol Heron. I felt like I was walking in the fire alright.

There was an opportunity for prayer ministry during the day and I went to Carol and Gloria for prayer. They laid hands on me and while they were praying over me Carol received a vision:

Carol said that I was sitting in a room and everything was dark and in the vision I asked “Why is everything dark?” Then in this vision a screen started to play like a cinema screen with pictures on it and I saw things on it that I couldn’t see while the lights were on. Carol said that this suggested that I was entering into a period of darkness that would bring spiritual revelation into my life and that I would receive new knowledge (new to me).

These words still blow me away, although in a sad kind of a way.

On Friday 26th April ’13 I wrote the following words in my diary.

Then a few weeks later I wrote this:

Kirsty came and introduced herself to us during our first outpatients appointment in Bristol. She was a fantastic friend to us during the 14 weeks that we were there. She regularly brought me food parcels when I was on “lockdown” with Leah in the Bone Marrow Transplant Unit. She also gave me a lift to church, or arranged for someone else to pick me up, the Sunday’s that I was able to go.

I remember that day at the “Walking in the Fire” conference, lifting my hands in worship, as we sang one of the songs that Leah so often played on her iPod:

10,000 Reasons By Matt Redman

The sun comes up, it’s a new day dawning
It’s time to sing Your song again
Whatever may pass, and whatever lies before me
Let me be singing when the evening comes

[Chorus]
Bless the Lord, O my soul
O my soul
Worship His holy name
Sing like never before
O my soul
I’ll worship Your holy name

You Give and Take Away

A friend recently introduced me to the Bible readings Jesus Calling by Sarah Young – I’ve been using them for a few weeks now and I’ve been so blessed when I read them each morning.

This morning I read the following and I was very challenged by what I read:

“The best response to losses or thwarted hopes is praise: The Lord gives and the Lord takes away. Blessed be the name of the Lord. Remember that all good things—your possessions, your family and friends, your health and abilities, your time—are gifts from Me. Instead of feeling entitled to all these blessings, respond to them with gratitude. Be prepared to let go of anything I take from you, but never let go of My hand!”

Search me, O God, and know my heart; test me and know my anxious thoughts. See if there is any offensive way in me, and lead me in the way everlasting.
—Psalm 139:23–24

Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time.
—1 Peter 5:6

And he said… “The Lord gave, and the Lord has taken away; Blessed be the name of the Lord.”
—Job 1:21 nkjv

Initially I thought “This can’t apply to someone like me whose child has died.” But then if you look at Job in the Bible, his 7 sons and 3 daughters had all been killed when he is quoted as having uttered these words.

Normally when I’m having my shower in the morning I listen to “Worn” by Tenth Avenue North on repeat, because that’s how I mostly feel inside:

“I’m Tired I’m worn
My heart is heavy
From the work it takes
To keep on breathing
I’ve made mistakes
I’ve let my hope fail
My soul feels crushed
By the weight of this world

And I know that you can give me rest
So I cry out with all that I have left”

However this morning as I prepared to have a shower, my hand selected a different song from my iPad playlist – “Blessed Be Your Name” by Matt Redman

“Blessed be Your name
When the sun’s shining down on me
When the world’s ‘all as it should be’
Blessed be Your name

Blessed be Your name
On the road marked with suffering
Though there’s pain in the offering
Blessed be Your name

Every blessing You pour out
I’ll turn back to praise
When the darkness closes in, Lord
Still I will say

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

You give and take away
You give and take away
My heart will choose to say
Lord, blessed be Your name”

Normally when I’m driving along I end up crying, because Leah and I spent so much time in the car together going to and from hospital appointments. However this morning as I drove to work, I found myself with a thankful heart – thankful for the 16 years that Leah graced our lives.

Thankful for who Leah was, for all the love that she brought into our lives, for all the happy times we shared, for everything she taught us.

Yes I’m still heartbroken, yes I wish we still had her alive and well, but how blessed we were to have had Leah in our lives for those 16 years.

We are very blessed with each of our four children.

This is Leah and her sisters in 2011, their brother is very camera shy!

10,000 Reasons

Yesterday, Wednesday the 23th April 2014, was my niece Charlotte’s wedding. Leah was to have been bridesmaid at this and she had been very excited about it. Leah had received the invitation to be bridesmaid while we were still in Bristol on Saturday 26th October 2013. We were busy packing our bags to fly home to Northern Ireland the next day, having spent 14 weeks there. I was with Leah when she was asked to be bridesmaid and I shared her excitement.

A few days before we left Bristol, my nephew, Leah’s cousin Daniel, had got married in Donegal in the same church as yesterday’s wedding.

Leah & I had looked forward very much to his wedding and it had been a focal point throughout Leah’s illness and treatment.

When Leah went to Bristol for her bone marrow transplant she had been assured that she would be home for Daniel’s wedding. There was hardly a day went by that we didn’t talk about this wedding and how much we were looking forward to being there and seeing all the family again.

However, due to complications of Leah’s transplant and the fact that she was very immune suppressed, Leah and I did not in fact attend Daniel & Jayne’s wedding in person. We were very disappointed about this. Instead we found a quiet corner in our Clic Sargent accommodation in Bristol and “attended” the wedding via FaceTime on Leah’s iPad.

For Leah, the thought of not only attending Charlotte and Jamie’s wedding in person, but also of being bridesmaid, was so amazing. Her only concern – would her hair have grown back? She didn’t want to have to wear her wig.

Charlotte and Jamie looked fantastic yesterday and my eldest daughter Rachel was stunningly beautiful as one of the three bridesmaids. The sun shone, the food was delicious and I was surrounded by friends and family.

It was also possibly the single most excruciatingly painful day that I have experienced since Leah’s death. My feelings of pain and loss seemed unrelenting and my tears felt like they were never going to end.

It wasn’t helped by the fact that yesterday was the anniversary of our first visit to Belfast City Hospital, the day when our haematologist told us all the awful stuff about Leah’s diagnosis and treatment. We were left reeling in shock and I remember thinking “It’s not just a bone marrow transplant my daughter needs – it’s a miracle.”

However, in my life of recent times I’m constantly aware of two threads running alongside each other. One is the almost overwhelming pain of my loss and grief for Leah. The other is God’s amazing and constant provision for me in my hour of need.

I feel sad but I also feel blessed – it’s kind of hard to explain……..

One of the hymns that was sung at the wedding service yesterday was the very same hymn that I posted on my Facebook page on that day one year ago when we were heading up to Belfast City Hospital – “10,000 Reasons” by Matt Redman

“The sun comes up, it’s a new day dawning
It’s time to sing Your song again
Whatever may pass, and whatever lies before me
Let me be singing when the evening comes
[Chorus]
Bless the Lord, O my soul
O my soul
Worship His holy name
Sing like never before
O my soul
I’ll worship Your holy name”

Give us this day our daily bread

The emergency ambulance was due to collect Leah from ICU at Belfast City Hospital at 9.30am on Thursday 16th January 2014 to take her and I to the N.I. Children’s Hospice where her life support would subsequently be switched off.

The day before that was very busy. It was only late evening on Tuesday 14th January that I had gained “agreement in principle” that Leah could leave ICU to die in the Children’s Hospice, but by Wednesday morning Leah’s medical condition was deteriorating so rapidly that the staff needed to act fast in order to fulfil our wishes.

Thankfully some of my favourite staff were on duty including two consultants who always communicated openly and freely with me. The doctor informed me that Leah may not live long enough to make it to the Children’s Hospice on Thursday and that there was a possibility that she wouldn’t even survive the journey there. He also said that she was too ill to be resuscitated.

I asked close friends & family to pray that Leah would be strong enough to make it to the Children’s Hospice, so as to have a peaceful & dignified death surrounded by those who had been closest to her in life.

A nurse who didn’t normally work in ICU was sent there for a few hours that Wednesday and she offered to make Leah’s handprint for me – I was so pleased. The small things become the big things at times like that.

Although the doctors had been telling me for well over a week that my daughter was unlikely to survive, they still seemed to struggle with letting her go. At 8pm on the Wednesday night two doctors asked our permission to do another washout of Leah’s lungs. Leah had been unconscious since Monday and was in no distress whatsoever.

One doctor carefully explained to us that another possible diagnosis had been suggested and he wanted to do a lavage to look for evidence of this. The downside was that Leah could die during the lavage and we wouldn’t have the hospice death we had planned. The positive was that if they found what they hoped for then they might well be able to save her life.

I had included Leah’s boyfriend Nic and my niece Ruth in the discussion with the doctor. The doctor was very careful to make sure that each of us understood everything. We unanimously decided to let the doctors go ahead. They allowed us to stay with Leah during the procedure so that if she did die, we would be there for her final moments.

The procedure did not harm Leah in any way, but they did not find what they hoped to find. I heard subsequently that the doctors were on the internet until midnight searching for some last ditch means of saving Leah’s life that had not already been thought of.

Predominantly I felt relief that Leah didn’t die during the procedure, rather than disappointment that it hadn’t worked – in my heart I knew that my child was going to die and that my role was to ensure that her death was as dignified as it possibly could be.

People say “How did you do all that?” Or “I couldn’t have done that.” Well if you’d asked me a year ago, that’s what I’d have said too. What I’ve learned is that God only gives you the strength when you are in the situation.

Most of you will have learned the Our Father/Lord’s Prayer as a child and prayed “Give us this day our daily bread.” Every day on this journey I have to rely on God for the “daily bread” of strength and grace for what I have to deal with.

When the the Israelites were in the desert they had to gather fresh manna every day and so do I, by spending time with God every day, even if it’s only for a few minutes. Matthew 4:4

The Israelites didn’t always like the manna – they wanted quail. Sometimes I’ve felt that way too. I would have much preferred the quail of God’s healing miracle in my daughter’s life, but God has chosen to sustain me with the manna of His comforting presence.

Leah and I always said that our “theme song” for the 14 weeks we spent in Bristol was Matt Redman’s song “Never Once”

“Scars and struggles on the way
But with joy our hearts can say
Never once did we ever walk alone
Carried by Your constant grace
Held within Your perfect peace
Never once, no, we never walk alone
Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful”

A Phone Call Can Change Everything

“My name is Dr ….. and I work in Belfast City Hospital. Has anyone given you the results of Leah’s bone marrow biopsy?”

It was Friday afternoon the 19th April 2013. I had been sitting on my bed, typing up an assignment for a work related course that I was doing, when the phone rang. It was a withheld number and I had hesitated before answering, not wanting to be interrupted by yet another stranger’s voice trying to sell me a product that I neither wanted nor needed.

My heart started beating faster and breathing became more difficult. This was a stranger’s voice alright, and although he wasn’t trying to “sell” me anything, the news that he was delivering, was something that I neither “wanted nor needed”.

He told me that Leah had a type of bone marrow failure called myelodysplasia and that she needed a bone marrow transplant.

I asked him if he was a paediatric haematologist and he said no, that he was an adult haematologist.

So I said “Why are you ringing me then, Leah already has an adult haematologist who we like very much and we don’t want another one.”

He replied that he was also a transplant coordinator. I then said that we had been told that if anything sinister was found in our daughter’s bone marrow biopsy that she would immediately be transferred to the care of the paediatric haematologist at the Children’s Hospital in the Royal who had done the biopsy. Our daughter was only fifteen years old.

This doctor replied that she wasn’t available at the moment ( I found out later that she was on honeymoon but that there was other paediatric haematologists).

He went on to say that he wanted our whole family in his consulting rooms in Belfast on Monday.

I asked “Is my daughter’s medical condition so serious & so urgent that we have to come and see you so soon?” And he replied “Yes – but you can come on Tuesday if you prefer?”

I then asked Leah if she would prefer to miss school on Monday or on Tuesday and she consulted her class timetable and said Tuesday, so Tuesday it was.

The reason Leah’s siblings were required was for “tissue typing” for a potential match for the bone marrow transplant.

Then he said “Miriam is only 9, she might be a bit young.” I told him that Miriam has very good understanding and she would most certainly want to be a part of anything that’s being done to help Leah.

I said “Please don’t make a difference in my children.” So he told me to bring all four of them.

I asked him where we had to go and he said “Well, you know where the Tower Block is at the City Hospital?” I was losing it at this stage and I said rather angrily through my tears “Why would I know where the Tower Block is? When in my entire life have I ever needed to know where your Tower Block is?”

He gave me more directions and the phone call ended.

Leah had been sitting beside me all this time, googling myelodysplasia and bone marrow transplant on her smart phone. That’s how she received her diagnosis.

I have to say, bad and all as that phone call may sound, it was wee buns compared to what we heard when we met the doctor face to face.

Nothing I read on the internet over the weekend was anywhere near as bad as what we were told when we got to that first appointment.

The phone call only told me that my daughter needed a bone marrow transplant and I knew very little about bone marrow transplants.

In that first appointment the doctor was so blunt about the implications of Leah’s diagnosis and consequently all the things that could go wrong before, during and after the transplant that we were left feeling that it was actually a miracle that Leah needed in order to survive! I write about this first appointment here.

It was a huge relief a week or so later when we got the phone call to say that Simon was a 10/10 bone marrow match as the Dr had said that if none of the siblings were a match then Leah would need a donor from the World Wide Registry.

He’d said that this could take up to 4 months and during the wait Leah’s disease could advance rapidly and her chances of survival could be greatly reduced.

A short while after this we also got word that Leah had been accepted by Bristol Children’s Hospital for transplant.

By then I knew that this was also good news as Bristol is a Centre of Excellence for treating rare blood diseases such as Leah’s and having her transplant there would greatly increase her chances of survival.

Gradually hope was being restored.

I have always loved the song “10,000 Reasons” by Matt Redman but it took on a special significance for me around the time of Leah’s diagnosis, especially the verse

“The sun comes up; it’s a new day dawning
It’s time to sing Your song again
Whatever may pass and whatever lies before me
Let me be singing when the evening comes”

For me the challenge each day was to be still singing when evening came.

In those early weeks and months after Leah was diagnosed I found it almost impossible to pray or read my Bible – I wasn’t angry with God, I have never felt a need to ask “Why?”

I just felt so overwhelmed by all that was happening and so numb with shock that the only way in which I could engage with God was through listening to worship music and singing along.

I haven’t a note in my head and can’t sing in tune to save my life, but I used to get on my own in the house or in the car and put on CDs of worship music and sing to God with all of my heart. This helped me to connect with God and feel His presence with me.