Grieving the loss of a child doesn’t end after a year, two years or even after eight years. Leah’s absence is everywhere I turn. There isn’t a day that goes by that I don’t miss her presence in the life of our family. I will continue to be a mum of four, even though one of the four is no longer on this earth.
Although I miss Leah every day, some days are harder than others: her birthday, her anniversary, my birthday, Christmas, Mother’s Day, family weddings, special family events and get-togethers. It matters to me that Leah continues to be included in our family events. Our youngest turned 18 last year. As part of her birthday celebrations, she and I went together to get our first tattoos – we each got one in memory of Leah.
Today is my 60th birthday. As part of my birthday celebrations, I had my hair dyed purple to raise much-needed funds for the (NI) Children’s Hospice.
On the 16th of January 2014, Leah died in peace and dignity at the (NI) Children’s Hospice, surrounded by love. Leah can’t be here today to celebrate my birthday but I know that she would totally approve of how I’m celebrating it; Leah loved children and she had a heart of compassion, especially for children and young people who face additional challenges in life.
Thankfully, due to the incredible generosity of so many people, I have exceeded the target that I initially set for my fundraising appeal. However, if anyone hasn’t already contributed and has the financial means to do so, the fundraising appeal is still open at JustGiving.
After 60 years of living I can say with certainty what matters most to me in life: relationships. My greatest joy comes from spending time with those I love ~ God, family, friends. Thankfully 2022 has been very kind to me so far with regards to this.
It is incomprehensible to me that it is now seven years since we said goodbye to Leah. During these seven years, my sense of grief and loss has evolved, but has never gone away and I certainly don’t expect it to.
The first few years after Leah died the pain of grieving was immense and very intense. It was frequently overwhelming. At times, when the painful feelings of grief and loss were acute, I wondered how it was possible to keep on living – or even just to continue breathing.
With time, my sense of grief and loss has mellowed somewhat. Most days I can live with the sadness without feeling overwhelmed by it. However, there are occasions when something (usually unexpected) rips open the wound of grief and once again I feel totally overwhelmed. A few weeks ago I was attempting to do some paperwork during my working day, when without thinking I clicked on a link to a song in a group chat on my phone. Immediately one of Leah’s favourite songs began to play. I was completely undone. No matter how hard I tried I could not regain my composure. I did not want to cause distress to anyone who might enter the room that I was in so I went outside for a walk. Fortunately, it was raining heavily so my tears were disguised and I just kept on walking until I felt calm enough to return to my duties. Thankfully, episodes like that are now infrequent. Most of the time I can live with the sadness of Leah’s absence without feeling overwhelmed with emotion.
Recently I opened an old Bible that I no longer use. In it, I discovered two little bookmarks from Leah that I had forgotten about. One of these she had made for me when she was younger:
The other one she had brought me back from camp when she was about 10 years old.
These bookmarks made me smile as I reflected on how Leah had invested in my life and also into the lives of others.
It made me wonder how I’m investing in other people’s lives? What will they remember from my encounters with them? Will they feel encouraged and blessed – or not?
2020 was a very challenging year for most people in so many ways. We continue to face significant restrictions in our daily lives due to the impact of the coronavirus pandemic. It’s so easy for us to become negative and disheartened. However, negativity and “glass half empty” thinking doesn’t help anyone – neither the speaker nor the hearer.
“It is usually our thoughts, not our circumstances, that cause us to sink. This is such an important truth to tuck into our minds. Mark it down: What we think becomes who we are.”
This is so true. How we think and what we focus on are so important. At the start of the first lockdown, I signed up for a free online prayer course created by 24-7 Prayer. It was run over 8 sessions and I found it very helpful. Handouts to expand on the material within the course were made available. One of the handouts that I found especially helpful was the one on “Breath Prayer”. I now find this a really helpful way to refocus my thoughts during the day. I subsequently discovered this website which gives some really good suggestions for breath prayers:
One of the breath prayers that I find especially helful at present is based on Exodus 33:14 :
“My Presence shall go with you and I will give you rest.”
I find it so helpful to remind myself that no matter what happens in life, that God has promised to be with me and that He gives me rest in my soul.
Every year I take the day of the anniversary of Leah’s death off work (annual leave). In the early days, I used to save up my holidays and take the whole week off, as I used to be totally incapable of functioning around this time. Thankfully I am now able to focus on my work on the days leading up to Leah’s anniversary, although every day I am of course very aware of what I was doing at this time in 2014.
I decided to take out Leah’s Youth Bible (the one she used most) and have a look through it. As soon as I opened it I noticed that she had cut out her daily devotional reading for Thursday 31st January 2013, laminated it and tucked it inside the front cover of her Bible. By the end of January 2013, Leah was having weekly blood tests at our GP surgery and had already had her first appointment at the Sperrin Unit; the Haematology/Oncology department at our local hospital. While we were in the Sperrin Unit Waiting Area, waiting to be called into that first appointment, I was devastated when a young nurse bounced up to us and casually asked us if we were waiting on chemotherapy. I was already very uncomfortable with the fact that our fifteen-year-old daughter had to attend an Outpatients appointment at the Haematology/Oncology Unit in the first place, but this suggestion/implication that our teenage daughter, who was so vibrant and full of life, could possibly be ill enough to ever require chemo, was more than I could bear to contemplate. Leah, however, took it all in her stride and chatted away cheerfully to the lovely Clinical Nurse Specialist who subsequently attended to us.
Anyway, I have digressed; the piece that Leah had cut out and laminated is entitled ‘No Accident’ and I thought that I would transcribe it here as it’s very good and I can see why Leah liked it:
Marianne Williamson said “Love is what we were born with. Fear is what we learned here.” Families, friends and life experiences can create fears and limitations that hold us back. We go about life doing the best we can in this messy mixed-up world in which we live, but if we’re not careful we can allow these fears to take over.
We can live by the labels put on us by others: ‘not good enough, not up to the task, never make it, won’t succeed:’ we label ourselves; ‘useless, worthless, a mistake.’ These labels can cause us to live believing we don’t matter, our life is irrelevant and unimportant even unwanted. Nothing could be further from the truth.
God doesn’t make mistakes. You’re not here by accident! You ‘are God’s masterpiece. He has created us anew in Christ Jesus, so we can do the good things He has planned for us long ago.’ (Ephesians 2:10) “I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.” (Jeremiah 29:11)
Don’t live a life of fear, receive God’s confident guaranteed hope for your life; He promises ‘Everything I plan will come to pass…’
Shake off your labels. Take time to think about what you believe about yourself. Are you walking around with negative labels attached to you? Look today at what labels God gives you in Psalm 139:14
Following this, I looked up Psalm 139:14 in Leah’s Bible. As I expected that they would be, these lovely verses were underlined. It gives me great comfort to think about these particular verses being special to Leah. Psalm 139 has long been one of my favourite psalms too.
Shortly after Leah was diagnosed she told us “God has a plan for my life, we need to see the bigger picture.” Leah did not say this lightly, Leah was fully informed about the seriousness of her illness and the possibility that she might not recover from it. She struggled with many aspects of her illness, such as the loneliness and social isolation of long weeks spent being nursed in isolation, and the horrendous side-effects from her intense chemo treatment, but she sought daily to trust God through it all and she didn’t fear death.
I remember so vividly one of the occasions when Leah was critically ill on a ventilator in ICU and the doctors weren’t sure that she would survive the next 24 hours: I played “Our God is a Great Big God” on her iPad. Leah was too ill to even open her eyes but her face lit up in a big smile and her hands (despite being attached to various monitors) did all the actions (every single one) to this song – because Leah’s God truly is a great, big God.
As this is a holiday weekend here I’ve had more spare time than usual, so today I decided to take myself to the local woods for a walk. As soon as I arrived there, I realised that it was during this very week in 2013 that I had walked there with a friend while Leah and Nic had their photoshoot done. Alison Hill did an amazing job of those photos and Leah loved them.
I was so emotionally fragile at that time (shortly after Leah had been diagnosed) and a walk in the woods with a friend was just what I needed. As all of these memories came flooding back I was glad that the woods were very quiet today. I needed to be alone with my thoughts. As I walked along I enjoyed taking photos of anything that caught my eye:
When I came to my favourite bench, I sat for a while and studied the photos that I had taken. Most of them were of the path. I reflected on this for a while, then I used my phone to look up Bible verses that mention the word ‘path’. I was somewhat surprised to discover that the word path is used quite often in the Bible. Here are some of the verses I found:
You make known to me the path of life;
you will fill me with joy in your presence,
with eternal pleasures at your right hand.
Psalm 16:11 NIV
Your word is a lamp for my feet, a light on my path.
Psalm 119:105 NIV
Trust in the LORD with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight.
After coming home from my walk I looked in my diary to see exactly when I had taken Leah for her photoshoot and what I had written about the event – I had certainly been in a very distressed state that day due to all that was happening. As I glanced over some of my journal entries, my attention was suddenly caught by something I had written on the 5th January 2014 while I was sitting with Leah in the ICU in Belfast City Hospital. Leah’s diagnosis had recently changed from PCP pneumonia to probable pneumonitis. On the 4th January, one of the consultants had taken me aside and had spelled out in words of one syllable what the implications of this new diagnosis were i.e. that Leah was very unlikely to survive. I was still praying and believing for Leah to be healed but as I wrestled with God regarding all that was happening, I had transcribed some words of an old hymn into my journal:
Yea, choose the path for me, although I may not see,
The reason Thou dost will to lead me so.
I know the toilsome way will lead to realms of day,
Where I shall dwell with Thee, O mighty Saviour.
There is that ‘path’ word again, all of this serves to reinforce for me the truth of Job 23:10; “He knows the way that I take” and He is with me every step of the way.
Occasionally I use Journaling prompts that I have downloaded and stuck into a notebook that I keep for this purpose. Today when I opened my notebook to do some journaling the prompt for today was “What song are you grateful for?”
However, instead of thinking of just one song I thought of many songs. Praise and worship music was a vital part of Leah’s illness journey for both her and I. Many times when we were lost for words, we listened to praise and worship music and we found that peace that passes all understanding.
I remember the first time that Leah developed neutropenic sepsis and I had to rush her to our local hospital. I was really scared, I think Leah and her boyfriend were frightened too. None of us spoke during the twenty minute journey to the hospital but we were comforted as we listened to the words of the praise and worship songs that Leah played on the CD player in the car.
During Leah’s illness journey and in the aftermath of her death I often felt so broken that I was unable to concentrate to pray coherently or to read my Bible. Praise and worship music became my means of communicating with God. My soul was stilled in His presence as I listened to our favourite songs.
After Leah died I put together an extensive playlist that I listened to almost continuously. I kept headphones beside the bed so that I could listen to these songs during the night without disturbing my husband. I played them in the car whilst driving and on any other occasion when I was alone. Some of these songs were ones that Leah and I had both loved, others were songs that friends had suggested to me to after had Leah died, the words of which really ministered to me.
I’ve changed phones a couple of times since then and was having difficulty accessing my original 2014 playlist, so I have recently recreated it on YouTube. There have of course been lots more playlists created since then, but on certain occasions such as Leah’s anniversary I like to reconnect with those songs that meant so much to me during her illness and immediately afterwards, when I felt so broken. Maybe this playlist of songs will minister to the heart of somebody who reads this post:
It’s almost four years now since Leah died and I still struggle with going on a shopping trip on my own. Whenever possible I shop online or wait until one of my children (or my husband) is available to accompany me. However there are some occasions when I do have to go shopping alone. I try to keep these shopping trips as brief as possible.
In years gone by I loved shopping and my shopping trips often lasted for several hours, but it is definitely now something that I do very much out of necessity rather than for pleasure. Today was one of those days when I headed out alone to get a few bits and pieces. Life has been busier than usual lately, so my youngest and I haven’t had time recently to go on one of our regular joint shopping trips.
As soon as I entered Foyleside Shopping Centre I was immediately drawn to the beautiful sound of children singing. I instinctively moved in the direction of this sound until a choir of Primary School children sweetly singing Christmas songs came into my line of vision. This young choir was surrounded by other shoppers who had stopped to listen and by adoring parents capturing the moment on camera.
In an instant I was transported back to when I was that proud parent and Leah was a young girl in her Primary School choir. Leah loved to sing. Tears blurred my vision as my heart ached with longing to once again hear the sweet voice that every Christmas echoed throughout our house with the words of one of Leah’s favourite Christmas songs:
Crackers and turkeys and pudding and cream, Toys in the window that I’ve never seen. This is the Christmas that everyone sees, But Christmas means more to me.
Chorus It’s somebody’s birthday I won’t forget, As I open the things that I get. I’ll remember the inn and the stable so bare, And Jesus who once lay there. ~ Everyone’s out shopping late every night, For candles and presents and Christmas tree lights This is the Christmas that everyone sees, But Christmas means more to me. ~ Christmas morning, the start of the day, There’s presents to open and new games to play. This is the Christmas that everyone sees, But Christmas means more to me.
My visit to Foyleside was brought to a swift ending – thirty minutes after I had parked my car I was back in it and driving away. Grief changes everything.
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.”
This morning as I sat having my Devotional Time, I looked up and there across the room I saw it – the beautiful miniature Christmas Tree that Esther Scobie had made us for what would be Leah’s last Christmas. My youngest had decorated the room after I went to bed last night! Little did any of us know in December 2013 that it would also be Esther’s last Christmas.
Tears spilled down my cheeks as I remembered the many thoughtful cards and notes that I received from Esther over the years, but especially during Leah’s illness. It is so hard to say goodbye to the special people in our lives.
Yet how blessed I am to have known Esther and how blessed I am by the many other beautiful people that God has brought into my life – some for a short season and some for the long haul.
“I thank my God upon every remembrance of you”
Since downloading a step counter onto my phone a few weeks ago I’ve become a lot more aware of how active I am (or otherwise) on different days throughout the week. Comparing my ‘steps’ with other family members also allows for a little ‘competitive edge’!
So this evening, after a rather sedentary weekend, I headed out to walk the three mile ‘square’ around where we live. Within minutes I realised that this was the first time since before Leah became ill in 2013 that I had headed out on my own to walk the roads around where we live.
When my mother died in 2008 in her eighties, I was quite aware of the many ‘firsts’ in that first year after she died. The second year after mum died was definitely a lot easier than the first. Losing a child has been very different; even three and a half years later it feels like there are still so many ‘firsts’ that I have to face, because to have faced them before now would have been too painful. I used to enjoy cycling the country roads where we live during the summer, both alone and with the children, but I have never been back on my bike since Leah died. That’s just one of several activities that I once enjoyed, but that I now avoid doing. Sometimes it’s easier to stay in the ‘safe zone’ than to do things or go places that are likely to trigger a grief reaction.
About half a mile into my walk I came to the field with the donkeys. A friendly donkey walked right over to the ditch where I was standing – just like the donkeys always used to do when I stopped there with Leah and her siblings.
This seemingly innocuous act caught me completely off guard – for a split second I was back in 2012 and everything was like it used to be – going for walks with the children and stopping to engage with friendly donkeys. Then a flood of emotion hit me along with the realisation of how much has changed since I last stood there looking at a donkey. I found it very difficult trying to process it all. I was glad of the quietness of the evening as I wrestled with my emotions and the tears fell freely.
About a mile or so further on, I encountered some sheep. They weren’t as friendly as the donkey, but some of them stopped to look at me.
As I thought about these sheep, I reflected on these words from Psalm 23 which is a psalm that I especially like:
The Lord is my Shepherd,
I shall not want,
Sometimes, when I’m very stressed, I repeat these words inside my head to remind and reassure myself that God is my Shepherd and that He has promised to take care of me. At times I recall how Leah used to sing the Stuart Townendversion of this psalm with the Girl’s Brigade choir and how her face used to radiate joy when she was singing. Listening to the words of this song brings me comfort too.
One of the devotionals that I regularly use during my daily time with God is the First 5 app from Proverbs 31 Ministries. This app is free to download and is compatible with iOS and Android. The First 5 app provides written Bible teaching Monday through Friday, with a teaching video every Saturday that includes a summary of the learning from the previous week.
A few weeks ago the weekend teaching was based on 2 Corinthians 12: 8-12 and was presented by Lysa TerKeurst, who is president of Proverbs 31 Ministries. Her message was entitled Perseverance through Pain. Earlier this year Lysa had a significant health scare which resulted in her undergoing surgery to remove half her colon. The results could have been devastating, but she has made an excellent recovery. At the time Lysa wrote on her public Facebook page:
I have no words. Except “thank you.” Thank You, God. Thank you friends who prayed me through this. Thank you to this surgeon who finally figured out why I was in excruciating pain for days and days in that hospital bed. Thank you that I still get to do life.
In her weekend teaching Lysa referred to her recent illness and recovery and talked about finding joy during difficult times and about the gift of experiencing God’s grace despite the pain. However Lysa is very clear that she doesn’t want to offer ‘easy answers’ to those who have prayed for healing for themselves or their loved ones and instead of God saying ‘yes’ He has apparently said ‘no’. Lysa talked about the death of her sister as a result of ‘a medical tragedy’. She said that after her sister died, she very much did not want people to offer her ‘easy answers’ as to why this tragedy had happened, because she needed space to ‘wrestle well’ with God.
Lysa’s phrase about wrestling well with God really resonated with me. I’ve written here before about wrestling with God. I don’t feel that I ever ‘lost’ my faith during Leah’s illness and death, however I have ‘wrestled with God’ over it all and I continue to do so as I seek to reconcile the events that have taken place, with what I believe to be true about God and about life. Tragedy and suffering definitely alter the lens through which everything is viewed.
Last weekend my husband and I watched the film Shadowlands, which is based on the romantic relationship between Oxford academic C. S. Lewis and American poet Joy Gresham, her death from cancer, and how this challenged Lewis’ Christian faith. We had previously watched the film when it was first released in 1993. This time round we found the film absolutely heart-breaking and we could identify with so much of it. However our recollection of watching it on the previous occasion many years ago, was of it being a ‘nice love story with beautiful scenery and a sad ending’!
There is a part towards the end of the film (at 1hr 55 min) after Joy has died when C. S. Lewis is grieving deeply and he joins his academic friends/colleagues at a social gathering. Lewis says to his friends:
“I wasn’t going to come tonight but then I thought I would.”
One of his friends responds:
“Life must go on.”
Lewis’s answer to this comment begins with the line:
“I don’t know that it must, but it certainly does.”
He then entreats his friends with the words:
“Don’t tell me it’s all for the best.”
Undeterred by Lewis’s heartfelt plea, one of his friends (one who wears a clerical collar) begins to give him a theological explanation for what has happened. At this point, C. S. Lewis, overcome with emotion, shouts at his friends, then apologises and quickly leaves. His parting words, said under his breath are:
“I just wanted company tonight.”
My husband and I have no recollection of this scene from the first time that we watched Shadowlands, but needless to mention, it impacted us greatly this time around. Although I feel greatly blessed by the many people that I have in my life who understand grief and loss and who continue to provide emotional support whenever I need it, I could also relate to this scene in which C.S. Lewis just wanted his grief and loss acknowledged and didn’t want to be offered ‘easy answers’. The scene is so heartfelt and poignant.
C. S. Lewis is also an excellent example of someone who knew how to wrestle well with God. His books continue to inspire long after his death and he is often quoted by other writers and speakers.