Today I opened one of the notebooks that I used for note taking during Leah’s many hospital appointments in 2013. Immediately my eyes were drawn to a sticky plaster carefully folded into a heart shape.
I instantly remembered where it came from – it was Friday 14th June 2013 and the five of us (our eldest was away working in the USA) were on our first visit to Bristol Children’s Hospital. As on every one of Leah’s hospital visits, she had blood taken that day. This was the first time that Leah had genetic testing done and the subsequent results were very significant. We also gave our consent that day for some of Leah’s blood to be frozen and kept at the hospital for future research.
After the nurse on Oncology Day Beds had taken blood from Leah she placed this cute sticky plaster with animals on Leah’s arm. Leah loved animals and she was very keen to visit Bristol Zoo or even make a return visit to Belfast Zoo – an ambition that was never realised sadly. Leah’s consultant in Belfast City Hospital informed her in mid December 2013 that her immune system could now cope with a trip to the Zoo. However with all the busyness of Christmas we did not have time to plan this before she died four weeks later – we always thought that there would be more time.
A few hours later this little plaster came off and Leah folded it neatly into a heart shape and presented it to me with one of her little smiles. I tucked it inside my notebook and there it sat until now. Another of Leah’s little ‘love notes’!
This also reminds me of God’s many ‘love notes’ to us. One of our favourite passages of Scripture to read during Leah’s illness was the last part of Romans Chapter 8. Leah and I drew great comfort from the fact that neither disease, nor chemotherapy, nor even death itself, would ever, could ever, separate us from the love of God that is ours in Christ Jesus.
Romans 8:38-39 “And I am convinced that nothing can ever separate us from God’s love. Neither death nor life, neither angels nor demons, neither our fears for today nor our worries about tomorrow—not even the powers of hell can separate us from God’s love. No power in the sky above or in the earth below—indeed, nothing in all creation will ever be able to separate us from the love of God that is revealed in Christ Jesus our Lord.”
Friday 27th December 2013 started well. That night we were planning to go to a big surprise get together of family and friends for my niece’s 30th birthday. Leah was happiest when surrounded by family and friends and this was the first family get-together that she had been allowed to attend since her bone marrow transplant in Bristol on the 1st August earlier that year. Leah was very excited.
However, during that day Leah became seriously ill, with an initial diagnosis of pneumonia. She was admitted to the Cancer Centre in Belfast and subsequently transferred to ICU at Belfast City Hospital. Two and a half weeks later we had a family get together of a different kind, when we all gathered together at the N.I. Children’s Hospice to say our goodbyes – the ones that we didn’t want to have to say.
During Advent I have been reading the daily devotionals that were especially written for the charity Samaritan’s Purse UK by Malcolm Duncan. He is a Pastor at Gold Hill Baptist Church and a leader at Spring Harvest. Malcolm is sadly very familiar with grief and loss. I previously wrote here about his very helpful sermons on the topic of the theology of suffering. In his devotional for the 1st December what Malcolm wrote regarding the death of a friend of his, has really stuck with me and brought me great comfort:
When my friend died, she left the land of dying and entered the land of the living. Death did not win. Cancer did not win. Sin did not win. Her salvation is now complete. She is more fully alive than she has ever been. She is more fully herself than she ever was. She is complete, truly released and free. Nothing can change who she now is. This is the great hope of every Christian. God wins! God always wins in the lives of Christians because God always has the last word.
During those two and a half weeks when Leah was dying, she and I derived so much comfort from listening to her favourite songs, which she had previously saved into playlists. Their lyrics washed over our hearts and minds and pointed us to the only One who could give us the strength to face each day.
Since Leah’s death most of these songs have continued to bring me comfort, as I miss Leah and yearn for her presence in our lives. Today I have one of the songs from this list playing on repeat; ‘Bring the Rain‘ by MercyMe.
Bring The Rain
I can count a million times People asking me how I Can praise You with all that I’ve gone through The question just amazes me Can circumstances possibly Change who I forever am in You Maybe since my life was changed Long before these rainy days It’s never really ever crossed my mind To turn my back on you, oh Lord My only shelter from the storm But instead I draw closer through these times So I pray
Bring me joy, bring me peace Bring the chance to be free Bring me anything that brings You glory And I know there’ll be days When this life brings me pain But if that’s what it takes to praise You Jesus, bring the rain
I am Yours regardless of The dark clouds that may loom above Because You are much greater than my pain You who made a way for me By suffering Your destiny So tell me what’s a little rain So I pray
Three days spent sheep spotting and I managed to see 19 Shaun’s out of a possible 70. My Sheep Spotter App tells me that I’ve walked 23 Kilometres in the process.
Not very impressive?
“Could have done better.” I hear you say?
I disagree, this trip to Bristol was never intended to be a race, or a “Who can see the most Shaun’s?” competition.
It was about having a relaxing holiday with my two girls and about remembering Leah.
I feel that I’ve achieved both.
I’ve cried and I’ve laughed.
On our first morning, we had breakfast in the Courtyard of Wesley’s New Room– or “breakfast with John Wesley” as I referred to it on my Facebook page.
I returned there later on my own. I entered the peaceful chapel, climbed the steps that lead to the place set aside for quiet prayer and there I sat and reflected.
I remembered how I had sat in that same place in August 2013, with my heart breaking, because my daughter was so sick and I didn’t know how to cope. God had met with me there. I write about this here.
My heart is broken now, only in a different kind of a way. I sat and read the same verses from Philippians 4:6-7 that I had read then. I felt the same hot salty tears flow down my cheeks.
I read from the prayers that were taped to the table beside the Bible. I was glad that there is a prayer especially for the bereaved. It is a comforting prayer.
On Wednesday I had breakfast with K who lives in Bristol. Her friendship meant so much to Leah and I during our time here. It was so lovely to have this time with her.
During this rendezvous, I bumped into the Dad of a young man who had been second next door to Leah in the Transplant Unit in 2013. I had not been in contact with them since leaving Bristol. As soon as I spoke to him, his face told me the news that I didn’t want to hear – his lovely boy had died just before Leah on the 23rd December 2013. This was a very emotional moment.
Thursday morning I had another breakfast date – an extra special one. Valerie’s teenage son Jonathan had a bone marrow transplant in Bristol in the Summer of 2008. Like Leah, he loved Jesus. Like Leah, Jonathan went to live with his Heavenly Father just a few short months after returning home to Northern Ireland, following his bone marrow transplant.
Like me, Valerie is the mother of four children. She doesn’t live near me, but a mutual friend introduced us after Leah died. Like me, Valerie loves Bristol.
Amazingly, when I told Valerie my dates for visiting Bristol, we discovered that our visits would overlap!
I don’t actually believe in random coincidences – as Leah told us after she was diagnosed “Mummy, we have to see the bigger picture”. There was definitely a “bigger picture” going on here.
Valerie and I sat in the warm sunshine and compared our journeys, remembered our children, and talked about the God who gives us the strength to go on.
Then, because it’s Bristol, there had to be a Shaun.
The rest of the day was spent with my girls, enjoying the Bristol sunshine and doing some sheep spotting.
No trip to Bristol is complete without a visit to ZaZa Bazaar to eat. Their food is A-M-A-Z-I-N-G! They are a buffet style “all-you-can-eat” restaurant serving food from all over the world. Rachel’s school friend Sally joined us for this one.
Now we’re off to London for a few days, to stay with my sister.
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:
When my Mum was alive, she used to come with me when I had to buy clothes and we used to have fun shopping together.
In 2008 Mum died and that year I was traveling to London with my work to meet Prince Charles. This necessitated buying a new outfit. I went over town to go shopping, but ended up in floods of tears and came home empty handed.
Leah was ten years old at the time. She made me this lovely card when she heard what had happened – I found it tonight while looking for something else. My Mum was known as Kal.
This card left me in tears when Leah gave it to me in 2008, but that is NOTHING compared to the effect it’s had on me tonight since I found it again.
Leah then offered to come shopping with me to help me pick an outfit. That following Saturday we went to Coleraine and got the complete outfit that I needed. From then on, Leah became my “personal shopper”.
In 2013, Leah and I ended up being in Bristol way longer than I had packed for, so I had to buy some new tops while I was over there. I used my phone to photograph the clothes in the shops, then I showed Leah the pictures and she advised me what to buy.
The last item of clothing that Leah ever picked for me is so precious. It was from M&S in Bristol.
Since Leah died, I struggle more with shopping than with anything else. Even today I sat in Tesco’s car park for 20 minutes before I could face into the store. I shop only out of necessity.
Facing people isn’t the issue – I enjoy meeting people.
It’s facing the shelves that’s the issue.
It’s never knowing when a strategically placed product will trigger a memory of a shopping trip with/for Leah and leave me completely undone.
When Leah had the haemorrhagic cystitis in Bristol, she had to have a high fluid intake of non fizzy drinks, so I scoured the shops for different drinks that she would like. I was so pleased with the variety that I had managed to buy for her on one particular trip, that when I got back to her hospital room, I lined them all up and took a photograph!
I know that I could avoid the shops completely now by shopping online, but then I don’t like running away from difficult situations either. It’s no way to live.
Leah’s words to me in this card just blow me away………..they are the words of a little girl who had surrendered her life to Jesus, who read her Bible every day and who prayed and sought to love God with her whole heart.
One of the many differences since Leah died is the quietness.
The house feels quiet, the car feels quiet and we are quiet, often lost in our thoughts and in our memories.
In September 2012, Rachel, the eldest of our four children, left home to go to university.
Then in November 2012 I started a new job.
December 2012 Leah had her first blood test.
In July 2013 Leah and I went to Bristol Children’s Hospital and we were away from home for 16 weeks.
December 2013 Leah was admitted to ICU and in January 2014 she died.
It feels as if just yesterday we had a noisy house and car full of children, but today there is just quietness.
Leah was the only one of our four children who ALWAYS played her music too loud and this used to drive me crazy.
In the car she used headphones, but even then she had her music turned up so loud that it still irritated me. I lectured her endlessly about the potential damage to her hearing.
Sometimes I would play my music through the car stereo to drown out what leaked from her earphones. Then she would turn hers up even louder, as she said that my music was drowning hers – parents of teenagers, you know how it is!
Now it all just seems too quiet.
Was it really so long ago that I was driving our 7 seater car with our kids and their cousins jumping about and belting out the Veggietales song “God is bigger than the Boogie Man”?
The August Bank Holiday weekend last year was very special. On the Friday Leah was transferred from the Bone Marrow Transplant Unit to the beautiful purpose built Adolescent Ward in Bristol Children’s Hospital. Leah had spent five long hard weeks in isolation. She now had a lovely single ensuite room on the adolescent ward.
Although Leah wasn’t allowed to mix with the other patients, she could move about the ward and use any of the facilities when the other patients weren’t using them. She would now be allowed unrestricted visiting, so her sisters could plan a trip over from Ireland. In the Transplant Unit the only visitors allowed were myself, her daddy and her boyfriend.
Emma B. from Limavady and her boyfriend Nic were there to help us move. Nic’s mum Kerry was waiting to welcome Leah to the world outside BMT. Although Leah was still ill and weak, we were all so happy and so excited. We felt that the worst was behind us and now it was onwards and upwards.
Leah’s own consultant, Dr C who we adored, was on call the whole weekend. This was a real treat. Doctors visits over the weekend were more leisurely, with plenty of time for conversation. On one of these visits, Dr C was examining the palm of Leah’s hand, looking for signs of GVHD, when he said very seriously “I see a tall dark handsome young man in your life.” He was of course referring to Nic and we all had a giggle. Everyone was so upbeat.
A few times over the weekend Leah and I went exploring our new accommodation. Leah was very weak and tired easily. She wasn’t yet up to a game of air hockey.
We had a laugh when we discovered that the ward juke box had quite a collection of Irish rebel songs and we sat trying them out.
Leah’s appetite was still poor and she was prone to vomiting. She was still being fed directly into her central line via TPN. However on the Bank Holiday Monday her TPN ran out and there was nobody available in Pharmacy to make up more. Dr C shocked me by telling us that we could go and spend the afternoon and night in our room at SAMs House, the Clic Sargent family hostel.
Leah was so pleased that I couldn’t show how I really felt – scared. Even though I’m a nurse and our room in SAMs House had a phone with a direct line to the hospital, I was worried that my daughter was too ill to be left in my care. I didn’t tell her how I felt – she didn’t need to know.
We were dispatched in a taxi with several bottles of high calorie, lactose free, Fortijuice food supplement drink, that Leah had no intentions of consuming. All she wanted was her mummy’s home cooking.
This presented another dilemma for me, as in order to buy food, I would need to leave Leah on her own for approximately 40 minutes. So, with my heart in my mouth, I walked as fast as I could to the local Co-op and bought the fixings for Leah’s favourite dish – chicken fried rice. She could only eat a small quantity, but she said that it was the nicest meal she had ever tasted.
She had a lot of tablets to take at bedtime:
I tucked her into bed that night, kissed her and told her I loved her. She slept soundly. For the first time in five weeks she wasn’t connected to any drips and wasn’t being woken by nurses coming to check her vital signs.
Me – well I must have seen every hour on the clock! I had become so used to the beeping machines, the lights, the hustle and bustle of the hospital, that I couldn’t cope with the silence and the darkness. It was almost like bringing a newborn baby home from the hospital – I had to restrain myself from getting up periodically to check that Leah was still breathing. All the while I was berating myself for feeling like this and thinking how ridiculous I was being.
We returned to the hospital in the morning and resumed inpatient status. That one night outside the hospital had given Leah such a boost to her morale and helped her to glimpse the light at the end of the tunnel.
Leah is gone from our lives 6 months today, so last night I did something I’ve been wanting to do for a while – I watched My Sister’s Keeper with Miriam, my youngest daughter. The last time we watched this film was with Leah, before she became ill.
I’m glad that Leah’s illness and suffering wasn’t prolonged like it was portrayed for the girl in this film.
Leah was unwell for just over 12 months.
I’m glad that I never had to make any difficult ethical decisions either.
I’m especially glad that when Leah was in an ‘end of life’ situation, that God gave me the grace and the strength to let her go and hand her over to her Heavenly Father.
When Leah became critically ill, I was able to talk to her about the possibility of death.
Leah would never have felt that death was a forbidden conversation topic, although of course I was praying for a miracle of healing as that is what I wanted most of all.
This time last year we were packing to go to Bristol. It was a time of fear and excitement.
More excitement than fear to be honest, because I really believed that through prayer, a bone marrow transplant and the amazing expertise of the haematology staff at Bristol Children’s Hospital, that Leah was going to recover.
Any fears I had at that stage, were fears of the “unknown” rather than fears of Leah not recovering.
This is a photo taken of Leah, Miriam, and I, as we were leaving the house to go to the airport to fly to Bristol on the 21st July 2013.
We had been told that Leah’s chances of recovery were 70% and that sounded quite good to me.
Recent research that was revealed to us since Leah died, would suggest that someone with Leah’s constellation of symptoms and her specific genetic mutation, only has a 50/50 chance of survival.
I’m really glad that we weren’t told THAT when she was alive. It’s important to hold onto hope and it’s easier – though certainly not impossible – to hold onto hope with a 70% survival statistic than with a 50% survival rate.
So what have I learned in the past 6 months?
I’ve learned that when Leah first died I was too numb/busy/exhausted to really understand the extent of my loss.
It’s only as time goes on that I’m realising how wide, high and deep is our loss.
I’m learning that emotional pain can be relentless.
I’ve learned that small unpredictable things will often cause me to fall apart quicker than the big predictable things – catching sight of one of her favourite foods on promotion in the supermarket often reduces me very quickly to tears. Since she was a toddler Leah loved shopping and invariably accompanied me on shopping trips – now I shop only out of necessity.
Sometimes I feel like I’m standing on the edge of a great abyss of emotional pain and grief.
However I’ve also learned that sadness and joy can coexist in my heart – I’m not sad all the time – there’s many happy moments too with family and friends and I definitely haven’t lost my sense of humour.
I’ve learned that I know some amazing people – people who have surrounded me and my family with their loving support on this sad and painful journey.
I’ve always been a very independent person but I can’t be so independent any more – I rely on emotional support from those around me a lot more than I used to.
I’ve discovered first hand the value of counselling – sometimes my weekly counselling sessions feel like an oasis in the desert – a safe place where I can talk about anything that I need to talk about.
I’m learning more about my relationship with God too – some things I’m less sure of and other things I’m more sure of, but I couldn’t get through any of this without Him.
I read my Bible every day and I use devotional readings, but I still find prolonged prayer difficult.
I continue to find worship songs the easiest way to connect with God and they often become my prayers.
The song that I have recently been listening to on ‘repeat’ is “Rescue Me” by Selah – the lyrics are amazing because they echo the cry of my heart:
Deep is the river that I have to cross
Heavy the weight on my shoulder
I have discovered how great is the cost
Of trying alone to cross over
I try and I try but the current’s too strong
It’s pulling me under and my strength is gone
Don’t leave me stranded
Rescue me, my God and my King
Water is rising and I cannot breathe
Wrap Your arms all around me and
Carry me over, carry me over
There is a bridge that is easy to cross
While all of our burdens are lifted
Peace is the land that is waiting for us
Lord, give me faith to believe it
Cause I’m in a storm but I’m willing to fight
I’ll overcome and I will not die with You by my side
Rescue me, my God and my King
Water’s are rising and I cannot breathe
Wrap your arms all around me and
Carry me over, carry me over
When her hair started to fall out she asked me to shave it off. Her boyfriend Nic filmed me doing this on the 7th August 2013. Leah was completely unable to speak at this stage as she had severe mucositis – inflammation and ulceration of her mouth. Oral mucositis is a common and painful side effect of chemotherapy.
Leah was on intravenous morphine for the pain and this made it difficult for her to stay awake. The beeping in the background was from one of the many pumps that she was attached to.
It’s amazing to look back and see how calm and peaceful Leah looked, at such a trying time.
Surely it is true what the Bible says in Psalm 29:11 “God makes His people strong.
God gives His people peace.”
Being a typical teenager, she took a selfie of her new image and posted it on Instagram: