Lessons from a Sticky Plaster

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.”

Remembering Merryn

I am really struggling to put my thoughts into words after attending Merryn’s Service of Thanksgiving today.

Leah was diagnosed in April 2013 and some of the members of Merryn’s extended family immediately came on board in their support of us.

Then in July 2013 came the devastating news of Merryn’s diagnosis. I was very concerned, as I perceived Merryn’s diagnosis of neuroblastoma to be far more serious than Leah’s diagnosis. Well, none of us know just how these things are going to work out, do we?

A few months after Leah died in January 2014, our church organised a walk and a climb in memory of Leah to raise funds for Merryn. This raised £9,100 for the Merryn Lacy Trust

I followed closely the posts on Facebook written by Merryn’s parents. Recently, as I read these posts and looked at the photos of Merryn, my heart sank. I could see that Merryn was a very ill little girl and that her parents were hearing and seeing things that no parent ever wants to hear or see. Jenny and Michael did their best to inject hope and positivity into the posts that they wrote, but I could sense their heartache and their despair.

I remember the days of the ‘positive spin’. I can recall discussing this with another cancer mum when Leah and I were in Bristol. This mum and I agreed that the daily reality of caring for our very ill children and witnessing their suffering, was at times so harrowing, that there was no way that we could inflict the undiluted truth on the unsuspecting public.

‘Positive spin’ was a technique that we deliberately employed, to protect our friends and our family, from the full extent of how difficult and distressing our circumstances truly were. Of course, we also wanted to preserve hope – ours and everyone else’s. Hope was our lifeline. We became experts at finding hope, when humanly speaking, there was little to be found. I remember ‘celebrating’ and writing any day that I don’t get bad news is a good day, when an ICU consultant told me one day that there had been no further deterioration in Leah’s condition. After days of being consistently told that Leah’s condition was steadily deteriorating and that she was unlikely to recover, I clung to whatever hope I could find, all the while praying fervently for a miracle of healing.

I recollect sitting on the hard chairs outside ICU in Belfast City Hospital, writing updates about Leah’s medical condition, trying to be as honest as I could and give enough accurate information so that people could pray for us, but then also injecting as much ‘positivity’ as I could muster. I clearly recall writing the last update on Wednesday 15th January 2014 and thinking “Vicky, the time for ‘injecting positivity’ has come to an end, just tell it like it is.” With an aching heart I wrote the words that no parent ever wants to utter: “At present it looks likely that end of life care for Leah will be put in place tomorrow Thursday.”

On Wednesday past, the 4th May, a friend contacted me at work to tell me that Merryn had died. I was heartbroken, I felt like I couldn’t breathe. I sat alone in a Clinic Room and sobbed for all who knew and loved this beautiful little girl.

Today, a white coffin was once again brought in to Kilfennan Presbyterian Church. Such a heartbreaking sight. I found it so hard to witness the pain etched in the faces of Merryn’s family members, knowing the road that they now must walk. This road of grief and loss and sadness.

There was comfort too, the comfort of friends, of family and of faith. In the weeks and months and years to come, Merryn’s family will need every ounce of this comfort.

Leah’s Parting Gifts

During the week I was speaking to somebody who has recently been bereaved of somebody close to them whom they loved very much. We talked about their illness and their end of life care.

In the course of our conversation I discovered that their loved one had died on the birthday of the person who was speaking to me.

I was quite taken aback at hearing this. I was unsure of what to say. Somehow, in my mind, this seemed to make this person’s story even sadder.

Quickly in my mind I searched for what I thought would be an appropriate response to what I had just been told. I opened my mouth to sympathetically say “That must be very difficult for you.” but instead I asked softly “What did that feel like?”

To my surprise, this person replied very positively that she saw it as a ‘gift’ – her loved one was terminally ill and in pain and she perceived it as her parting gift that her loved one’s body was released from pain and sickness on her birthday!

I have reflected much on this conversation since. The person I was speaking to was unaware of my circumstances and I think that was good, because it allowed her to speak freely without feeling uncomfortable or ‘worried’ about me.

Her positive attitude in the midst of her own obvious sadness and sense of loss has been helpful to me. I was reminded once again of how important ‘perspective’ is – how we frame a situation really does affect how we feel about it.

I was also reminded that grief and distress is such an individual thing and that we can never truly know the significance of any situation for another person unless we hold space for that other person to communicate to us what it means to them.

If I had replied with my intended response of “That must be very difficult for you.” I would have indirectly been implying that she should feel negatively about her loved one dying on her birthday – maybe then she would not have felt comfortable about telling me how she really felt. We would both have missed out.

Since this conversation took place, I have thought about the children’s story book Badger’s Parting Gifts, which I read many times to my children when they were small, to help them to understand and process death in a positive way.

This book describes how Badger’s friends were very sad after he died. Then they remembered all the special treasures that they had in their lives because of having had Badger as a friend and they drew comfort from this in their grief and loss.

Leah wasn’t old like Badger, she was only sixteen, but she has also left us so many gifts. I thought about listing some of those gifts here, but then I realised that – just like Badger and his friends – the ‘gifts’ that Leah left will be individual for each of you, depending on the capacity in which you knew her. 

Maybe you too would like to read “Badger’s Parting Gifts” – it’s narrated here in this Youtube video:

A Chance Encounter

The view from Leah’s grave this morning

I know that our daughter isn’t in her grave.

The Bible says ” absent from the body and present with the Lord.” 2 Corinthians 5:8

However, I find a comfort in going to the Cemetery.

It is a peaceful place in which to grieve and remember Leah, away from other distractions.

Sometimes the conversations I have there bring comfort too.

This morning as I watered the flowers on Leah’s grave, another woman stopped to speak to me:

“Is that your daughter? She’s beautiful? So young too.”

We talked for a while. She told me about burying her two sons as young adults, due to a progressive genetic disorder. Turns out she’s a nurse too.

We cried and we hugged.

There can be comfort and blessing in the sharing.