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