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 Birthday Barbecue

Our Leah has a really good friend called Leah R and this year for her 14th birthday she decided to have a big barbecue and invite lots of people.

 
She wanted the barbecue to be a celebration of our Leah’s life and she asked everyone to make a donation instead of bringing a birthday present. The money donated will be divided between three charities: Clic Sargent The Anthony Nolan Trust and the N.I. Children’s Hospice. She printed this account and handed it around at the barbecue:

 

Thankfully we were blessed with good weather. People young and not so young started arriving at her family home shortly after 4pm and most were left by 11pm. There was a steady trickle of people coming and going all evening and food, both savoury and sweet, was in abundance. There were many helpers, including the lovely Ferguson sisters and smiley Ben from New Zealand. There was a bouncy castle and sumo wrestler suits.

 

 
The young people played football and there was face-painting. Later in the evening the young ones toasted marshmallows and sang worship songs around the fire.

 

 
Some of us older ones got a bit chilly so we went inside and enjoyed good conversation and caught up with old friends as well as making new ones. Cups of tea and coffee were being continuously handed out while homemade cakes were passed around too.

Leah R’s parents, Owen and Lesley, constantly circulated, welcoming guests as they arrived, ensuring everyone got enough to eat and drink and that no one was left out. Approximately 120 people attended and over a thousand pounds was raised, to be divided between the three charities.

There were thank yous for everybody as they left –

 

 
When my husband and I were leaving we were given these beautiful flowers.

 

 
One of my Bible readings for today was
“Jesus went to them, walking on the sea. . . . And they cried out in fear.”
– Matthew 14:25-26 nkjv

It then goes on to say how the disciples were in the midst of a storm and because Jesus came to them in a way they weren’t expecting they almost didn’t recognise Him.

Grief is a storm too and sometimes the waves threaten to overwhelm me and I wonder if it really is possible to go on. I risk making the same mistake as those disciples, by not noticing how in the midst of my grief God has sent so many beautiful people to show His love to us as a family.

God’s lights in my dark night are so numerous and each one is exceedingly precious – how would we ever have survived this far without the loving support of the people He has placed in our lives?

Leah loved Girl’s Brigade

My husband and I presented a cup tonight in Leah’s memory at Kilfennan Girl’s Brigade Display.

It has been designated as a “friendship cup” to be awarded to the girl each year who makes the most effort to befriend others just like Leah did.

I was over the moon when the cup was awarded to Leah Rossborough, who had already greeted us with a warm smile on our arrival.

Our Leah joined the Girl’s Brigade when she was three years old and rarely missed a night since. She loved G.B. and it played an important part in her life

G.B. helped to mould Leah’s character and her faith. Leah received her diagnosis six days before last years GB display so she took part last year knowing that she was very ill and needed a bone marrow transplant.

I thank God for the Godly influence of the GB captain Mrs Roberta Smith, the officers and helpers and for all the love and support they have shown us since Leah became ill and subsequently died.

Your grace abounds in deepest waters

For the benefit of those who read this and don’t live locally, I would like to say a bit about Leah’s wake and funeral.

Leah came home on Friday (17th January) and as I said previously she was laid out in her blue formal dress in a white coffin with pale pink satin trim.

Her coffin was open in her bedroom. Surrounding her coffin on the bed were items symbolizing the different aspects and stages of her life.

These included her Girl’s Brigade hoodie and armband, her L.O.S.T. polo shirt, her school tie, items associated with Ballykelly C.O.I. Banter, her Baby Books and various photo collages.

Her pink fairy lights adorned the top of her bed and her Spotify playlist played softly in the background.

Many hundreds visited our house to pay their respects.

Visitors to our house included family, friends, neighbours, work colleagues, friends of friends, tradesmen who had worked on the house or supplied materials, the staff of Leah’s Primary & Secondary schools & people from the various youth organisations she was involved with and representatives of Sinn Fein, SDLP, & DUP – we have always encouraged our children to respect everyone’s cultural backgrounds & everyone was very welcome.

An army of women manned the kitchen and served tea, sandwiches & traybakes (cakes and biscuits, mostly homemade) to every visitor. Sandwiches, cakes, biscuits, home baking, milk, tea bags all miraculously appeared in the kitchen thanks to the kindness of friends, family and neighbours.

Soup, stew and other more substantial meals were also provided for us. Neighbours erected temporary signs giving directions to the wake and offering their driveways for “wake parking” – one of the many lovely things about rural Ireland is how everyone pulls together in a crisis.

On the Sunday morning family members gathered in Leah’s room for a time of reflection & prayer before the coffin was closed.

Neighbours & friends gathered outside the house. Then the men of the family including Nic took it in turns to carry Leah’s coffin to the road and we walked a short distance behind the hearse.

When we had driven to the main road the police (PSNI) were there ready to stop the traffic & stood to salute as the hearse pulled out into the traffic.

At Kilfennan Presbyterian Church an estimated 1,100 -1,200 gathered for the final farewell. The Girls Brigade Company had formed a Guard of Honour outside the church.

Members of the congregation had worked hard to set up relay systems outside and in overflow rooms and everything was done to perfection.

Funerals aren’t meant to be beautiful but Leah’s funeral service was beautiful – everyone says it was such a fitting tribute to who she was.

Terry Smith our church organist played the first hymn – the extended Smith family have been a great source of support to us on this journey.

The remaining music was played by “Under Construction” of which Leah’s cousin Peter is a member – Leah loved hearing them play. They were absolutely brilliant.

Rev Rob Craig, then present Moderator of the Presbyterian Church gave the address, he has known Leah from birth and everything he said reflected who she was.

Leah’s coffin was carried out of the church to one of the latest songs by Rend Collective – her favourite Christian band – called “My Lighthouse“.

After the committal at Ballyoan Cemetery, everyone was invited back to the church hall where another army of women served tea, a finger buffet and home baking (including gluten-free) to hundreds of people.

Horace and I got a chance to speak to a lot of people but unfortunately, we couldn’t get around everyone.

I would like to introduce you to yet another song that Leah and I listened to a lot, especially in Bristol.

You may ask “How come you listened to so much music?” The past 9 months have contained a lot of waiting, lot of “hanging about” and a lot of being away from home.

When Leah was well enough she used a lot of this time to study for her GCSEs, but there were many times when neither of us could barely concentrate to read or watch TV and that just leaves silence.

Sometimes silence is good – when it’s a peaceful stillness. However, when you are virtually living on a Children’s Cancer Ward and your child is unwell and everyone else’s child is unwell, silence can become a vacuum into which unwelcome thoughts crowd.

In Bristol, during those times when no words were left, I would get into Leah’s hospital bed and cuddle up beside her and this song always seemed to soothe us: “Oceans” by Hillsong

“Your grace abounds in deepest waters
Your sovereign hand
Will be my guide
Where feet may fail and fear surrounds me
You’ve never failed and You won’t start now”