Another First

Another First

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.

Field

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.

donkey

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.

Sheep 1

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 Townend version 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.

Operation Beautiful~One Note At A Time

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.

Choose

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‘.

Spiritual Sparkles.jpg

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:

Secret Post-iter.jpg

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:

Sams House Post It (1)

After Leah died our eldest daughter Rachel showed me this post-it that Leah had stuck on her bedroom mirror:

Rachel's Post It

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 Peter 3 v 3

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 Display

The Girl’s Brigade Display

image

Anyone who knows Leah, knows that Girl’s Brigade was an important part of her life. This means that for me, all Girl’s Brigade events are tinged with sadness.

Earlier this week I took part in the annual display of Ballykelly Girl’s Brigade, where I help with the Explorer’s Section.

Then tonight I represented Ballykelly GB by attending the annual display of 2nd Limavady Girl’s Brigade. It was a very enjoyable evening – a lot of hard work goes into these annual displays. Some parts made me laugh – I especially liked their pink panther sketch. Some parts left me in tears, but that of course was completely unintentional on their part.

At the end of April I plan to attend the Girl’s Brigade display, of the Kilfennan 320th Girl’s Brigade Company, which our youngest daughter attends. This is the GB Company that Leah belonged to, from she was three years old.

image

Leah participated in their display every year, including in April 2013, six days after she had received her diagnosis of myelodysplasia with monosomy 7.

My favourite memory of Leah taking part in the annual GB display, is the part at the end which is called “the finale”. This is where the older girls usually sing a medley of modern praise and worship songs.

Leah always sang with a smile on her face and sang earnestly, like she meant every word. That image is indelibly imprinted on my mind and always resurfaces when I hear certain songs.

This year at the Kilfennan display, Leah’s peers will receive their “Queen’s Award”.

In the Spring of 2013 Leah filled in the paperwork to commence working towards her Queen’s Award. On the 10th April 2013, a group of girls from Kilfennan GB (including Leah) travelled to Ballymena for an Induction Evening to learn more about working for their Queen’s Award.

On the 29th May 2013 Leah sent the following email to the administrator at Girl’s Brigade Headquarters N.I.:

Unfortunately due to being diagnosed with cancer I have to defer Queens Award for a year. However I hope to pick up again next year when all my treatment is complete and I’ve recovered, thank you for giving me the opportunity to be a part of Queens Award 🙂

Leah composed the email herself and I remember thinking at the time that the person receiving it would probably be quite shocked. I didn’t voice my thoughts however, I just told Leah that it was nicely worded.

Now however, I can’t even read it without crying. Leah’s wording seems so simple, yet so profound.

So matter of fact, with no trace of self pity.

Leah takes nothing for granted, just says that she HOPES to be well enough to resume working towards her Queen’s Award in the future.

As always with Leah, she expresses her thanks and appreciation.

As Leah’s friend states in her guest blog That’s who Leah was.

The Girl’s Brigade District Parade

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.

image

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

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.

Your Love Never Fails

Your Love Never Fails

Romans 5:5 (NKJV)
“Now hope does not disappoint, because the love of God has been poured out in our hearts by the Holy Spirit who was given to us.”

For most of January to mid July 2013, Leah had anaemia, thrombocytopenia and severe neutropenia; the main risk from this being susceptibility to infection.

Yet miraculously for most of that time, Leah was able to live a relatively normal life.

She attended Limavady High School up to mid May ’13. She attended Girl’s Brigade, Sunday SchoolChurch, L.O.S.T. (Limavady Outreach and Service Team)Youth Fellowship, BK Banter, went shopping, ate in restaurants, went to the cinema and travelled on public transport. She even went with the Girls Brigade for a weekend to an outdoor pursuits centre where she participated in every activity. I write here about Leah’s weekend away with the Girl’s Brigade.

image

In February ’13 Leah had an appendicectomy and didn’t need antibiotics or a blood transfusion. She returned to school, via public transport, a mere ten days post surgery. The bus driver was very kind and lowered the bus for Leah every morning for the first week. Either her brother or her friends carried her school bag and escorted her around the school. She was determined not to fall behind with her school work.

Only once in that six months was Leah hospitalised for a high temperature – nothing ever grew in her blood cultures though and her temperature quickly settled.

image

By the Summer of 2013, thousands of people were praying for Leah and I believed that prayer had created an invisible bubble of protection around her. This didn’t of course mean that we were foolish and threw caution to the wind. I was very aware of the need to help Leah make lifestyle decisions that took her low immunity into account and balanced sensible precautions with quality of life. For that reason, she dropped out of her Silver Duke of Ed Award, something that she was very upset about at the time.

On Monday afternoon 15th July ’13 we unexpectedly received a phonecall to say that a bed was available for Leah in the Transplant Unit and we needed to fly to Bristol that coming Sunday the 21st July ’13. The following few days were an absolute whirlwind of activity.

Thankfully one of my sisters came to stay, to help us get organised. Knowing that I would be away from my home and family for 2 or 3 months, there were many arrangements that needed to be put in place before we left the country.

As we prepared to go to Bristol I felt a fear of the unknown, but my overriding emotions were hope and excitement. I saw this as primarily an adventure whereby Leah would receive the treatment that would save her life. I believed that the combination of the prayers of God’s people and the expertise in Bristol Children’s Hospital would be a winning combination.

image

On Monday 22th July ’13 @ 8.30am as I pressed the buzzer for Leah and I to gain entry to the Bone Marrow Transplant Unit in Bristol Children’s Hospital, Leah said to me “Mummy I don’t feel well.” That just about set the scene for things to come – whatever could go wrong did go wrong.

Within hours Leah was very seriously ill. Within a week Leah had five different bugs growing in her blood – abnormal ones that the doctors didn’t normally see in these circumstances, some were even resistant to antibiotics.

image

Recently I sat and read through my personal diary from July/August 2013 and it made grim reading. To be honest I was shocked by some of the stuff that I read – I had forgotten just how awful those first few weeks were. I wrote about feeling so isolated and so devastated. I wanted to go somewhere where I could cry and scream, or even run away from all this awfulness, but there was nowhere to go – I needed to stay and care for and comfort my daughter. I felt disappointed with God and abandoned by Him and I wrestled in my heart with all of those thoughts and emotions.

image

Do you know what was especially hard? It was looking at Leah and seeing in her face that she was wrestling in her heart with all of this too!

Sometimes we couldn’t even find words to speak to each other, as disappointment just hung heavy in the air between us.

No matter what though, Leah always wanted me to read the Bible and pray with her. We struggled at times to hold onto hope, but somehow in the midst of it all, we still knew the source of true hope.

image

On Tuesday night 6th August Leah’s boyfriend Nic and his mum Kerry arrived in Bristol for a weeklong visit.

That was a major turning point for both Leah and I.

Leah was overjoyed to see her boyfriend. Nic proved to be most attentive and very capable, which meant that I was mostly off-duty during the day. Kerry was an excellent companion for me – there when I needed her but always sensing when I wanted space too.

During that week I was able to make phonecalls, get regular meals, fresh air, exercise, make friends with some of the other families of children receiving treatment and figure out my way around the centre of Bristol.

image

That first Sunday that Nic was there with Leah was also my first opportunity to go to church at PipnJay in Bristol. God ministered to me so powerfully that Sunday morning. I write more about this in my blog post entitled Pip n Jay Church. Immediately after the service, four of the ladies in the church took Kerry and I into a side room and prayed with us for Leah and our situation.

By the time Nic and Kerry left Bristol, my strength had been renewed. Leah was also coping much better.

image

The Bible verse that Leah had chosen in June 2013 for the prayer cards that were printed for her by our church was Nehemiah 8:10
“For the joy of The Lord is your strength.” 

Leah’s joy was again severely tested in Bristol in October ’13 due to a combination of unfortunate events: A baby we were very fond of died suddenly on the transplant unit at the end of September, Leah developed low mood as a side effect of medication, she became physically very unwell as a complication of her transplant and was readmitted to the Bone Marrow Transplant Unit AND all the time spent away from home and in isolation was really getting to her and she was dreadfully homesick.

It broke my heart to see my normally joyful, faith filled daughter, descend into the very depths of despair. A lovely nurse from the Child and Adolescent Mental Health Team (CAMHS) visited Leah a few times. One Saturday, when Leah was really struggling emotionally to cope with everything, the psychiatrist on call was brought in to see her. How physical illness and the side effects of treatment can ravage the mind!

Eventually, as Leah’s physical health improved, her mental health also improved. Getting home in November helped too. However, she was very anxious about catching up with her GCSE studies and even when home, her life was far from normal due to the complications of her transplant. Yes, Leah was happy and got on with things, but I could still sense an underlying low mood.

It was only in ICU in January 2014 when facing death, that Leah’s peace and hope and joy were fully restored. The closer she came to death the more joyful and peaceful she became. Leah told Nic that she wasn’t afraid to die. One Sunday afternoon in ICU Leah showed us the words of one of the songs that she loved to listen to –

“One Thing Remains” by Jesus Culture –

Higher than the mountains that I face
Stronger than the power of the grave
Constant through the trial and the change
One thing… Remains [repeat]

[Chorus:]
Your love never fails, never gives up
Never runs out on me [3x]
On and on and on and on it goes
It overwhelms and satisfies my soul
And I never, ever, have to be afraid
One thing remains

[Bridge:]
In death, In life, I’m confident and
covered by the power of Your great love
My debt is paid, there’s nothing that can
separate my heart from Your great love…

Yes the hope of healing left Leah and I disappointed, but not the hope of eternal life, not the hope of God’s love – there was no disappointment there. When I looked in Leah’s eyes in ICU in January 2014 I saw a different facial expression to the one that I had seen in those early weeks in Bristol, when we were both so shocked by how ill she had quickly become. In January 2014, although on a ventilator and critically ill, Leah’s face radiated joy and serenity.

image

What about me? What about my joy and hope? On the 1st June 2013 I wrote in my diary that I was choosing joy to be my attitude as I walked this illness journey with Leah. I wrote that my time with Leah may be short or may be long, and I didn’t want to waste it being sad or depressed or angry – I was actually quite surprised when I recently read that in my diary, as I had forgotten ever thinking that way. I also wrote that my joy would come from knowing that God is in control of our lives.

By the time we returned from Bristol at the end of October ’13 I hadn’t much joy left, sadly. Firstly, having seen my daughter suffer both mentally and physically eroded my joy. Secondly, seeing so many other children very ill, on chemo and knowing the families of some who died, also stole my joy. I’ve had to live with where my memory has been. I write more about this in my blog post Brokenness.

In December ’13 when Leah developed a spontaneous fracture of her spine I was distraught. I hated to see her in pain and needing help with personal care, especially when she was supposed to be getting better. I often lay in bed at night battling my emotions and trying to rein in my thoughts. However I made a conscious decision to be joyful over Christmas so as to enjoy that time with my family. Christmas Eve night was the first time in six months that the six of us were together under one roof and it felt so good. We had two lovely days together before Leah’s final admission to hospital. I write about this in Altogether At Last and also in I’m so glad that we were able to have Christmas together.

Since then of course, my emotions have been through the wringer. I cry every day. I cry in supermarkets. I cry in church. I cry in forests. I cry a lot while driving the car – I remember all the times spent ferrying Leah to and from her appointments, listening to our favourite music. Crying just feels normal, I miss Leah so very much.

image

The Bible says in Ecclesiastes 3:4

“A time to weep, and a time to laugh; a time to mourn, and a time to dance

Right now I’m in a season of mourning – grieving and mourning are a NORMAL response to loss. There’s no shortcuts, because I loved much, I grieve much.

image

The Bible says in Isaiah 53:3 that our God is “a man of sorrows, acquainted with grief” – knowing that helps me.

What also helps is the many people – family and friends – whom God has used to bring help and comfort to me and my family. Some of these people are in for the long haul and are very present in our lives. Others are cyber friends who send an encouraging comment just when I need it.

image

Some are friends or acquaintances who appear out of nowhere when I’m out somewhere and falling apart inside. They come up and say hello and give me a hug and chat for a couple of minutes and give me a chance to cry or talk about Leah. Then they are gone and I’m feeling so much better and inwardly I say “Thank you Lord – that was just what I needed.”

The Girl’s Brigade CD

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.
imageimage
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.

image
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.
image
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:
image
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.
imageimage
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.