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.