Operation Beautiful~One Note At A Time

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.

The Girl’s Brigade District Parade

“Are you able to go to our Girl’s Brigade annual district parade on Sunday?”

That’s all she said; a seemingly harmless, innocuous question, but in an instant I was in tears. Crash! The next wave of grief had caught me completely off guard.

Up until that moment I was basking in the glow from the lovely day out I’d had with my youngest the day before.

Mother’s Day had been bearable too – a chance comment from our pleasant dinner guest had caused me to realise that I could now bake sponge pudding without becoming distressed – a task that would have felt impossible six months ago.

Maybe I was actually beginning to make progress? Maybe there is light at the end of this interminably long tunnel?

Just one tiny innocent question from our Girl’s Brigade Captain and the memories had come flooding back. I was transported in my mind back to Sunday 24th March ’13 when I last took part in our annual GB district parade along with our two younger daughters.

The service was in Magheramason Presbyterian Church. Leah belonged to a different Girl’s Brigade company to Miriam and I. Miriam sat near me and Leah sat off to my right with her GB Company, still in my line of vision.

Leah was anaemic and tired easily but never admitted defeat, she had been unwell since before Christmas.

Later that evening she went to Youth Fellowship at our church and recorded her I AM SECOND testimony.

The next day, Monday 25th March, Leah travelled to the Royal Sick Children’s Hospital in Belfast for her first bone marrow biopsy. Her dad and his two sisters accompanied her. I went to my work because I said that I never wanted to have to set foot in a Children’s Cancer Ward, or ever see boys and girls with nasogastric tubes and chemotherapy hair loss.

Our haematologist had told us that they were 95% sure that they wouldn’t find anything sinister in Leah’s bone marrow – that they were only doing this definitive test to put everyone’s mind at rest, for once and for all………

Sometimes this business of grieving reminds me of that ridiculously repetitive song that we used to sing on long bus journeys as children:

The bear went over the mountain
The bear went over the mountain
The bear went over the mountain
And what do you think he saw

He saw another mountain
He saw another mountain
He saw another mountain
And what do you think he did

The bear went over the mountain etc etc

I’m so thankful that Leah recorded that short I Am Second testimony – I love the part at the end where she says

“God will let you bend but He’ll never let you break.”

Sometimes I just have to hang on to that.

Away in a Manger

Away in a manger,
No crib for His bed
The little Lord Jesus
Laid down His sweet head

Be near me, Lord Jesus,
I ask Thee to stay
Close by me forever
And love me I pray

Bless all the dear children
In Thy tender care
And fit us for heaven
To live with Thee there

How can it be that after 10 months of daily crying and grieving that there are still whole areas of grief and loss that I haven’t even begun to address? All that it takes is some wee trigger and the floodgates of my emotions are thrown open.

Tonight at Girl’s Brigade the children were singing Christmas songs. This was the first time this year that I had heard any Christmas carols. It felt like a painful wound had been suddenly opened.

Last year our Christmas came to an unexpected and very painful end. On Friday 27th December I left the house at 8am with Rachel and Leah to drive to Belfast to take Leah to her regular weekly appointment at Belfast City Hospital.

We were all in good form because that night we were going to a big family get together in Donegal – our first since going to Bristol in July for Leah’s bone marrow transplant. Leah’s consultant had given her permission to go to the party.

My sister was flying in from London and was meeting us at the City Hospital. Leah’s boyfriend had been in England over Christmas and he was flying back that day in time for the party too. Leah was so excited.

By late afternoon Leah’s two aunties, her boyfriend and his mother had all congregated at the City Hospital. Sadly they all, along with Rachel, had to leave the hospital without us. Our Christmas celebrations had ended.

I eventually returned home on Thursday 16th January. I gathered up Leah’s Christmas presents, the packaging, the Christmas paper, cards, selection boxes and her unopened birthday presents and made room for her coffin.

Although “Away in a Manger” made me cry tonight – the words are also very beautiful. They tell the story of that first Christmas when Jesus – our saviour – came to earth as a baby. The carol finishes with a prayer that all of God’s children be made fit for heaven to live with Him there.

When Leah was three years old she asked Jesus to forgive her sins and to live in her heart as Lord and Saviour. Through her daily walk with God, through attending Church and faith based organisations – including Girl’s Brigade – Leah grew in her knowledge and understanding of God.

The peace and serenity with which Leah could face death leaves me in no doubt that the last verse of “Away in a Manger” is true of her. That assurance, despite all my tears and sadness, brings me great comfort.

Grief has no rule book

Today we finished clearing out Leah’s wardrobe of her clothes and footwear.

Certain items of sentimental value were picked out and placed in our Memory Box – her Girls Brigade hoodie, her LOST polo shirt, her favourite pyjamas while in Bristol, the extra pretty socks she wore to theatre in Bristol when they were removing her Central Line because she was critically ill with a “line infection” that was antibiotic resistant, the fleecy monkey poncho that so many admired, the dress she wore for the photo shoot with Nic a few weeks after her diagnosis, the top she wore on her first trip out of hospital after her transplant.

I encouraged Leah’s sisters and some others who were close to her, to pick out the items that they liked from Leah’s wardrobe for themselves.

Seeing people that Leah loved wearing her clothes, brings me far more comfort, than seeing those items gathering dust. The remaining items went to the N.I. Hospice Charity Shop.

There’s no timetable for grief, no right way or wrong way to remember our loved ones and to let go of personal possessions. Everyone has to find their own path through the sadness.

Paradoxically, Leah’s medicine drawer lies untouched. I still have a need to gaze into it on a regular basis and look at the many drugs that kept Leah alive after her transplant. The ‘innohep’ (tinzaparin) is the anticoagulant injections that I had to give Leah every morning. She used to wince at how cold my hands were.

The staff in Belfast City Hospital constantly complained that Bristol Hospital had discharged Leah home on ‘innohep’ as it’s apparently a drug they never use and they had to order it in especially. In Belfast they use enoxaparin/clexane.

The first couple of times it was quite a palaver to get the ‘innohep’, but our Teenage Cancer Nurse Specialist went to great lengths to try and smooth things out for us.

It might sound strange, but it brings a wry smile to my face to see the drug that was somewhat begrudged to us, lying unused in the drawer.

So many memories.

The Girl’s Brigade CD

Today I listened to this CD of worship songs recorded by Leah along with all the other girls in Kilfennan Girls Brigade in 2010.

The money raised from sales of this CD was divided between Kilfennan GB and the NI Children’s Hospice, where Leah subsequently died in January 2014 in peace and dignity.

Every April our Girl’s Brigade finishes its year’s work with a fantastic display for parents and friends. The last performance on the night’s agenda is the finale. This is where the girls of secondary school age – the ‘Company Section’ – usually sing a medley of favourite worship songs/choruses.

Leah is first on the right hand side of the middle row

I used to love the expression on Leah’s face as she sang – it radiated joy. Leah’s facial expression told me that she meant every word:

All I once held dear, built my life upon
All this world reveres, and wars to own
All I once thought gain I have counted loss
Spent and worthless now, compared to this

Knowing you, Jesus
Knowing you, there is no greater thing
You’re my all, you’re the best
You’re my joy, my righteousness
And I love you, Lord

Now my heart’s desire is to know you more
To be found in you and known as yours
To possess by faith what I could not earn
All-surpassing gift of righteousness

Oh, to know the power of your risen life
And to know You in Your sufferings
To become like you in your death, my Lord
So with you to live and never die

Graham Kendrick
Copyright © 1993 Make Way Music,

When Leah was three years old she came home from Good News Club and asked Jesus to forgive her sins and to live in her heart as her Lord and Saviour.

One of her favourite wee books used to be “Jesus all alone” that she had received as an Easter gift at the Parent and Toddler Group at our church. It tells the story of Jesus dying on the cross. She had memorised the words from cover to cover when she was very young.

Early in 2012 when Leah was 14 she found herself struggling both emotionally and spiritually. That Summer she went to C.E.F. Camp (Child Evangelism Fellowship) in Rossnowlagh in Donegal and also to the ‘Livewire’ teen programme at New Horizon in Coleraine, where she met with God in a new and deeper way. This is a text she sent me that week:

Leah stayed with friends in Portstewart for the week of New Horizon. At the end of that week I collected her and brought her home, a 40 minute journey.

Leah talked excitedly the whole way home about what she had learned about God and about what He was doing in her life. When we reached our house it was a while before she could even stop talking long enough for us to get out of the car. I was so delighted and amazed to hear everything that she was sharing with me. I remember the next night in the kitchen Leah hugging me and her telling me “Mummy I just love Jesus so much!”

In October that year Leah was asked to write out her testimony for a youth conference in Donegal.

When Leah was in Intensive Care, on one of the days that the doctor had called me out to explain that my daughter was unlikely to survive, I came back into her room and searched on YouTube for the song “Our God is a Great Big God” and played it. Leah was on a ventilator and too weak to even open her eyes, but she immediately smiled and used her two hands to do all the actions to accompany the words.

Our God is a great big God
Our God is a great big God
Our God is a great big God
And He holds me in His hand.

He’s higher than a sky scraper
And He’s deeper than a submarine.
He’s wider than the universe
And beyond my wildest dreams.

And He’s known me and He’s loved me
Since before the world began.
How wonderful to be a part
Of God’s amazing plan.

The closer Leah came to death, the more joyful and peaceful she became.

She told Nic, her boyfriend, that she wasn’t afraid to die.

She was as sure of the truth in the words of the above songs on her death bed, as she had been when she sang them with the Company Section of the 320th Girl’s Brigade Company.

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.

God’s Provision

Leah’s first blood test was on the 31st December 2012 and she did not receive a final diagnosis until the 19th April 2013.

Paediatric myelodysplasia with monosomy 7 is quite rare, occurring in approximately two per million children and it can be quite difficult to diagnose.

During the time that Leah was having investigations we were told that our approach was to be one of “watchful normalisation” i.e. we were to keep Leah’s life as normal as possible but at the first sign of an ache, pain, cough or cold we were to phone the 24hr helpline at the Sperrin Oncology/Haematology Unit at our local Altnagelvin Hospital immediatly.

If Leah needed to travel overnight beyond the jurisdiction of our local hospital I was to send written instructions with her to ensure that whatever hospital she was taken to would immediately phone the Sperrin Unit for advice on her care.

Leah was scheduled to go on an activity weekend with the Girl’s Brigade to the Share Outdoor Activity and Adventure Centre in Lisnaskea in Co. Fermanagh exactly seven days after she received her diagnosis. I checked with our local hospital consultant what exactly I needed to put in the letter that would go with her. He expressed some concern about her going. I said that she had been looking forward to it for weeks, especially since she had to drop out of her silver Duke of Edinburgh hike because of her severe neutropenia. I reminded him of his stated policy of “watchful normalisation“. So then he said “well I suppose there would be no harm in her going and watching the other girls taking part.”

I remember that as the bus pulled away from the church on Friday 26th April another parent said to me “Don’t be worrying, Leah’s in good hands.” and I replied “I’m not capable of worrying because I’m still in shock from her diagnosis – I can’t even think straight.”

Leah came home from the GB weekend on Sunday and happily informed me that she had PARTICIPATED IN EVERY ACTIVITY. I nearly had to be worked with.

As the days and weeks went by and I realised how weak Leah’s immune system really was and how risky it had been for her to go on that weekend and take part in every activity, especially when she was geographically so far away from a specialist haematology/oncology unit if she had become unwell, I felt terrible for having exposed her to such danger.

Now however I thank God that Leah got to go and have fun and be with some very special people at a time when she was dealing with the worst possible news she would ever receive. Leah had been in the Girl’s Brigade since she was three years old and it was such a big part of her life. I know that the GB weekend in the Share Centre meant so much to her. I look back now at so many things that happened along the way and marvel at how, in the midst of Leah’s illness and our distress, God was always providing what was needed.

Obviously we would have much preferred if Leah had been healed, but that choice wasn’t ours to make. As Rev Craig said at Leah’s funeral, some things in life will always remain a mystery. However, the sense of timing and of God’s provision in Leah’s short life continues to amaze me.

“And my God shall supply all your need according to His riches in glory by Christ Jesus.”
Philippians 4:19