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.”
I have been acutely aware since waking up this morning that today is the 1st of September – the start of Childhood Cancer Awareness Month. I wish that I wasn’t Child Cancer Aware – not to the extent that I am now anyway. I wish that I could just roll back my life to a time four years ago when (despite my nursing qualifications) my knowledge of childhood cancer was almost non existent. Yes of course it’s important to be Childhood Cancer Aware but I wish that this was mere ‘head knowledge’ and not ‘heart knowledge’.
My ‘awareness’ of childhood cancer causes me to feel deep sadness and fight back tears every. single. day. The least wee thing can trigger this – a product display in the grocery store, a casual comment from a friend or work colleague, a memory that suddenly pops into my head.
This time three years ago Leah and I were in Bristol Children’s Hospital. The previous week Leah had been transferred out of her isolation cubicle on the Bone Marrow Transplant Unit to a beautiful ensuite room on their amazing purpose built Adolescent Unit. We had also been told the most fantastic news ever, which was that Leah’s bone marrow transplant had been successful and that she was fully engrafted. We were ecstatic. It was now going to be onwards and upwards, or so we thought.
Leah was allowed off the ward for short periods of time, so on the 2nd of September we very cheekily had a sneaky trip to the local Costa – this was strictly forbidden as Leah’s immune system was still very fragile.
Sadly our euphoria was short lived, as over the following weeks and months, side effect after side effect from the harsh treatments that she had experienced began to ravage Leah’s body, until finally – five months post transplant – these side effects also claimed her life. The cure proved as destructive as the disease.
Devastatingly, this is the reality of childhood cancer.
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.
Tomorrow I’m leading Children’s Church – something I seldom volunteer for since Leah died. This morning I was scouring the house for our Veggietales DVD collection to use one of them in Children’s Church, when it occurred to me that some of them might be in Leah’s bedroom. As I was searching through Leah’s possessions, I found myself lingering, reminiscing, and grieving.
Sometimes people ask me whether it gets easier as time goes on? I’m not sure if the pain of child loss ever gets any less. What has changed as time goes on is my ability to deal with the pain. I’m gradually learning some coping strategies that enable me to live with the pain of child loss, so that I can, by God’s grace, live a relatively normal life most of the time.
There are some of Leah’s belongings that I haven’t looked through at all since she died. Today, while going through a few of those, I came across a booklet that she had received at Girl’s Brigade called ‘Spiritual Sparkles‘.
I know that being a part of Girl’s Brigade was really important to Leah and that she would probably have read this booklet from cover to cover. I found myself glancing through it as I thought about my daughter. My attention was suddenly gripped by this page:
The ‘secret post-iter‘! That’s where she got the idea from! Leah was well known for writing encouraging notes on post-its and leaving them for others to read. In March 2013 Leah introduced this concept at the LOST outreach weekend for young people in Limavady.
Before we left Sam’s House in Bristol in October 2013, I was dispatched to the shops to buy her a packet of post-it notes. Afterwards one of our friends posted this on Facebook:
After Leah died our eldest daughter Rachel showed me this post-it that Leah had stuck on her bedroom mirror:
Leah also had lots of post-its stuck up around her own bedroom to encourage her as she recovered from her bone marrow transplant and battled GvHD (graft vs host disease). She struggled with the very unpleasant side-effects of high dose steroid therapy and chemotherapy hair loss and she needed all the encouragement she could find:
I miss Leah’s little notes; every time I do a clear out I find some little card or note of encouragement that I received from her over the years. I cry for what I have lost, I thank God for what I have had and I carefully place each note or card in a Memory Box.
I think the idea behind Operation Beautiful is really worthwhile. Their website explains their purpose:
The mission of Operation Beautiful is to post anonymous notes in public places for other people to find. The point is that WE ARE ALL BEAUTIFUL. You are enough… just the way you are!
I know that Leah was very concerned about the many negative messages that young people are getting and the effect that this is having on their self image and their self esteem. I can see why this simple concept would have really appealed to her. I think that it’s a lovely idea.
Before we went to Bristol I read the daily devotional Streams in the Desert via an app on my mobile phone. I was being blessed and helped by these devotional readings, which were first published in 1925.
While Leah and I were in Bristol one of the ways in which friends and family from home blessed us was with post – lots of it. We were the envy of the other families staying in Sam’s House because most of the post was for Leah and I.
Every time Leah moved to a new hospital room, her boyfriend Nic helped to arrange her cards so that she could gaze at them from her bed and receive encouragement from them. During the weeks that Leah and I were able to stay at Sam’s House, her cards adorned our room there too.
One day in August 2013 a package addressed to me was deliver to Sam’s House. The first thing I always try do is guess who a parcel is from. However the handwriting on this parcel was unfamiliar to me.
When I unwrapped the package there was an array of pocket sized items, thoughtfully chosen for my situation; lovely lip balm, pretty tissues, M&S boiled sweets, scented alcohol hand gel – all such necessary items for the circumstances that I was in at the time. Best of all, there was a beautiful leather bound copy of Streams in the Desert. All of this from a “Bible study friend” at home in N. Ireland.
This little book, along with my Bible, has been a treasured part of my life since then. I would describe it as the daily devotional that reaches the parts that other devotionals don’t reach. Two and a half years on and it continues to be the gift that keeps on giving. I never cease to be amazed by how relevant it is to how I’m feeling or to what I am going through.
We as a family are indebted to the Northern Ireland Cancer Fund for Children for their help and support. We have once again benefitted from one of their amazing therapeutic short breaks at Daisy Lodge in Newcastle, Co. Down.
Initially we were allocated a Specialist Worker. Our Specialist drove the 70 miles from Belfast to meet with our family and we warmed to her straight away. Our initial contacts with her were of the “getting to know you” variety, as she assessed what our needs were and explained to us what help was available.
When Leah and I returned from spending 14 weeks in Bristol, traumatised from all that had happened, our Specialist was there to support us. Within days she pulled up in her car and took Leah and I out for afternoon tea in a quiet location. The cafe had a gift shop attached so we browsed there too. After so many weeks of sickness and hospitalisation, it felt abnormal to be doing normal things, but it was very helpful to be doing them in the company of somebody who understood our journey and who could support us emotionally. Leah was immune compromised and unwell and she had to spend a lot of time at home in her bedroom. Our Specialist understood how boring this would be for a teenager, she talked to Leah to find out her interests and started her on jewelry making. Our Specialist provided the materials and Leah was able to make gifts for some people that Christmas.
Then, during the 2.5 weeks that Leah spent in ICU in Belfast City Hospital before she died, our Specialist spent time with me, in the hospital cafe, providing me with emotional support and giving me time to talk.
Leah in December 2013, three weeks before she died
After Leah died, our Specialist kept in touch with us and she ensured that we as a family availed of the therapeutic short breaks at Daisy Lodge in Newcastle, Co. Down.
It’s very difficult to be a parent when you’re grieving and your heart is broken – potentially every family member becomes ‘lost’ and isolated in their grief and sadness. It’s very difficult to do things together as a family when the very act of doing so is such a painful reminder of the one who is missing. Coming to Daisy Lodge as a family has become a vital part of our healing. When we are there, the five of us sleep in adjoining rooms so we are constantly in close contact.
All meals are provided so there isn’t the distraction of shopping/preparing food/cleaning up – we are there simply to enjoy each other’s company. While staying at Daisy Lodge, parents and adult children are offered a complementary therapy session (massage/reflexology), to ensure maximum relaxation. There’s usually an opportunity for the Mum’s and older girls to get their nails or makeup done as well.
Always, in the background, the therapeutic specialist staff are available to listen and to support. There are optional group activities that all the family can take part in. It really helps to know that on all occasions you’re in the company of people who understand; whether you are interacting with the other families staying there or with the courteous and compassionate staff. This past weekend our girls played board games in our bedroom on the Saturday morning – that would NEVER happen at home.
Saturday afternoon all five of us went for a walk at Tollymore Forest Park, when we are at home we’d be doing well to even get two family members agreeing to do anything together. At Tollymore, Simon and Miriam displayed a newfound interest in nature photography!
We chatted, we ran, we laughed, we remembered, we healed another little bit.
Then we (minus Simon – his computer beckoned) headed into Newcastle for Maud’s Ice-cream – it was yummy!
After a delicious evening meal back at Daisy Lodge (we will be rolling home) Miriam, Rachel and I put on Lush face masks and then they both gave me a massage as one of my Mother’s Day treats.
After this, Horace and Rachel headed off to use the sauna downstairs.
Later on Horace and Simon played a game of pool together. I was feeling very relaxed (!) and said that I would just lie in bed and rest my eyes for a little while. I must have been very relaxed because I fell into a deep sleep and had the best night’s sleep that I’ve had in ages. I didn’t even hear any of them coming to bed. Sunday morning (Mother’s Day) us mums had a choice between getting our makeup or our nails done. I already knew what I wanted. Leah loved painting her nails and she used to paint my nails too. I seldom wear nail varnish since she died. Getting my nails done would be a special way of remembering her on Mother’s Day.
Each mum also received a gift bag of treats. I waited to open mine until I was back in the room with my girls. Rachel and Miriam gave me a Yankee Candle. I love candles.
Then there was just enough time for a relaxing bath, with one of the Lush bath bombs that my eldest gave me for Christmas, before heading down for dinner.
Sunday lunch, as always, was truly scrumptious.
Sadly after dinner it was time to pack up and say goodbye – Rachel back to University life in Belfast and the remaining four of us back to our home where our two younger children rapidly became their usual monosyllabic selves and retreated to their caves bedrooms absorbed in their electronic devices. However, I feel so rested and relaxed and I have lots of happy memories and gorgeous photos.
The Cancer Fund for Children support:
Children who have been diagnosed with cancer
The siblings of a child who has been diagnosed with cancer
The parents of a child who has been diagnosed with cancer
A child whose parent has been diagnosed with cancer
We as a family very much appreciate the fundraising efforts of so many people who have walked, swam, ran, cycled, abseiled, done parachute jumps or given their loose change to support the Cancer Fund for Children.You are helping to bring healing to families whose lives have been ravaged by a cancer diagnosis.
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.
I started reading her book today. On page 73 Kay quotes Psalm 139:13:
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