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.
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.
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.
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.
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.
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.” 2Samuel 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.
When Leah was in Bristol having her bone marrow transplant in 2013 there were eighty 6 foot high Gromit sculptures dotted around the town.
Leah managed a sneaky trip off the ward to see a small number of them before they were all gathered up and auctioned off in aid of Bristol Children’s Hospital.
Before we left Bristol they had announced that they would be doing it all again in 2015, but this time using Shaun the Sheep sculptures.
Leah and I talked about it and agreed that we would just have to return for this event. She looked forward to coming back as a tourist rather than as a patient.
Much of Leah’s time in Bristol was spent in isolation, feeling very unwell. My outgoing, fun loving daughter found this very hard going.
We even discussed with her sisters about this plan to return in 2015 and see Shaun the Sheep. They were definitely up for it too.
So, after Leah died, we talked about it and decided to go ahead with the plans, as part of our way of remembering her.
Now that it’s here I’m both excited and terrified.
Excited at the prospect of returning to the City where Leah and I spent 14 weeks and laid down some very precious memories. Leah wasn’t acutely ill all of that time, often times we traced the rainbows through the rain.
Terrified that it will all be too much for me emotionally.
Excited at the prospect of having a holiday with my two lovely daughters in a City that I absolutely fell in love with, despite the tragic reason that took me there in the first place.
At times in recent weeks I have asked myself “Vicky, why are you doing this? Why are you returning to Bristol?”
I have known since Leah died that I would return there for a visit, but I can’t quite explain why. It just feels right. Bristol was such an important part of our journey.
When I was with my counsellor a few days ago I asked her “Why am I doing this?” she’s very good, she always helps me, she replied “You know that you’re doing the right thing, but some things only make sense when you’ve done them and can look back at them.” I thought that was quite a good answer.
As with some other things that I’ve done since Leah died, which have been emotionally very difficult, I feel like we are honouring Leah’s memory and continuing her legacy within our family.
Sometimes you just have to go with your gut feeling, trust the process and hope and pray that everything works out.
I came across this F-E-A-R acronym recently and I like it:
Before Leah & I left N.I. to go to Bristol, a friend contacted me to say that her son was at university in Bristol and he could put us in contact with a good church there. I was delighted to hear this as it was really important to Leah and I to have spiritual support locally during our time in Bristol.
I gave my friend’s son an outline of the kind of church where I would feel comfortable and he put me in contact with K from Pip n Jay Church. K was ideal as she worked part time with the church and part time in Bristol Children’s Hospital.
At our first outpatient appointment in Bristol, K strolled into the consultants room – while we were with Dr C – to make our acquaintance. I thought how different this was from N.I. where everything seems so formal and NO-BODY would ever wander uninvited into a consultants office – I thought it was lovely actually.
During Leah’s five weeks in the bone marrow transplant unit K couldn’t visit her, as visiting was very restricted. However the days that K was working in the hospital she arranged to drop off sandwiches for me and anything else that either of us needed. Once Leah and I moved to the Adolescent Ward K used to come visit us, which we really appreciated. On one of the occasions when Leah’s boyfriend Nic was arriving, K offered to drive us to the airport to collect him.
Leah travelled in the car with us. Although she wasn’t allowed out of the car at the airport, it was an enormous treat for Leah just to have a car journey and to actually see around her. Other than when arriving in Bristol and leaving, that was the only time in 14 weeks that Leah got to see around Bristol – she loved seeing the suspension bridge and she longed to visit the zoo, as she had seen it signposted.
The day we travelled to the airport K was just back from ‘Momentum’ in Somerset, where Rend Collective – Leah’s favourite group – were the resident band. K told us that Rend had launched a new song and she played it for us on her iPhone – it was called “My Lighthouse”. Leah and I instantly loved the song and listened to it a lot after that. It was subsequently played at Leah’s funeral.
On the Sunday mornings that Leah was well enough for me to leave her, I went to church at Pip n Jay. Either K or another church member always came and collected me. The church building is very old and traditional, but the church services are quite modern with a lively style of worship – reminded me of when Leah and I used to visit Coleraine Vineyard Church at home during the summer. I was made so very welcome at Pip n Jay, members of the congregation always assured me of how much they were praying for Leah and I. I felt so at home there and I always felt blessed and encouraged when I went.
When I got back from church Leah often asked me what songs we sang and what I had learned from the sermon. Sunday 11th AUGUST 2013 Greg preached on the topic “Praying when God is silent.‘ He quoted from C.S. Lewis “The Problem of Pain”
“Meanwhile, where is God? This is one of the most disquieting symptoms. When you are happy, so happy that you have no sense of needing Him, so happy that you are tempted to feel His claims upon you as an interruption, if you remember yourself and turn to Him with gratitude and praise, you will be—or so it feels—welcomed with open arms. But go to Him when your need is desperate, when all other help is vain, and what do you find? A door slammed in your face, and a sound of bolting and double bolting on the inside. After that, silence. You may as well turn away.”
That’s where I was that morning, but I couldn’t voice that, however God knew exactly what I needed to hear that Sunday morning and every Sunday that I made it to Pip n Jay. Greg went on to share helpfully from the Scriptures about how God’s silence purifies us in so many ways and produces humility and perseverance. He encouraged us to read Psalm 22 which predicts Jesus’ suffering and death. Greg said that ultimately God’s silence points us to the cross where Jesus was temporarily separated from his Heavenly Father while taking the punishment for our sins.
Mark 15:34And at three in the afternoon Jesus cried out in a loud voice, “Eloi, Eloi, lema sabachthani?” (which means “My God, my God, why have you forsaken me?)” NIV
I probably haven’t explained Greg’s sermon very well but all I know is that God met with me through it and in a sense said to me “It’s ok Vicky, I know where you’re at and I’m with you in all of this.”
Leah kept saying that she wanted to come to church with me before we left Bristol. I told her that this wouldn’t be possible as she was severely immuno compromised and couldn’t mix with people. However Leah was insistent that she wanted to go to PipnJay just once. So I discussed this with K and we figured out how to facilitate Leah while minimising her exposure to risk.
On our last Sunday before leaving Bristol, Leah & I went to the Sunday morning service, equipped with alcohol gel to clean her hands every time she touched something. No hugging or handshakes allowed. Leah and I sat separately from the rest of the congregation. It’s a big old church building and there’s parts that aren’t used. Leah was so delighted to visit this congregation that had been loving us and supporting us for the duration of our stay, especially as she knew that once she got back home, attending church would be out of the question for months.
I took this photo that morning at PipnJay. Leah was on mega doses of steroids at the time so she has puffy “hamster cheeks”! She had been extremely unwell in the weeks preceding this. I don’t usually publish photos taken October 2013 as Leah always said that was the worst month of the entire 12 months of her illness. I actually find it difficult to even look at photos of Leah taken in October 2013, knowing what she endured that month.
The Sunday that Leah was with me was the 20th October 2013. Tim was preaching from Matthew chapter 5 and he also quoted from C.S. Lewis from the book ‘Mere Christianity’ –
“If I find in myself desires which nothing in this world can satisfy, the only logical explanation is that I was made for another world.”
Early on in Leah’s illness, when I saw how amazingly well she coped with everything, I said to my father-in-law “You know Billy, I don’t think Leah was made for this world.” Needless to mention, he started crying when I said this! In reality, I think that God was working in Leah’s life to prepare her for all that lay ahead.
I remember that morning at church in October we sang “In Christ Alone” by Stuart Townend. Within three months it was sung at Leah’s funeral. The words are powerful.
“No guilt in life, no fear in death,
This is the power of Christ in me;
From life’s first cry to final breath,
Jesus commands my destiny.
No power of hell, no scheme of man,
Can ever pluck me from His hand:
Till He returns or calls me home,
Here in the power of Christ I’ll stand.”