The Boyfriend

The Boyfriend

image

At the beginning of 2013 Leah was having weekly blood tests. The haematologist in our local hospital had booked her in for a bone marrow biopsy, but I received a phone call the day before it was due to take place to say that it had been cancelled (postponed) by the regional paediatric haematologist in The Royal, as she believed that Leah’s weekly blood results weren’t consistent with any nasty bone marrow disorders.

The abnormalities of Leah’s red blood cells had been diagnosed as hereditary elliptocytosis and now they just needed to come up with an explanation for her severe neutropenia and steadily decreasing platelet count. They were veering towards the cause being some type of autoimmune disorder.

On the phone to my sister I told her that I didn’t agree with the diagnosis – I didn’t believe that Leah could possibly have developed two concurrent but distinctly separate haematological abnormalities.

This seemed to me to be way too far fetched to be believable. Personally I was convinced that Leah had some rare form of bone marrow failure and this was what was causing all the haematological irregularities.

My sister wanted me to tell the consultant what I thought, but no way was that ever going to happen. I am a junior nurse and junior nurses should be seen and not heard.

Somewhere during Leah’s subsequent 18+ inpatient weeks and multitudinous outpatient appointments, I learned to speak up – I can’t imagine ever being so bird-mouthed again.

Another thing that I recall saying to my sister early in 2013, was that I wished that Leah didn’t have a boyfriend, because if everything was to go pear shaped, then I didn’t want Nic and his family to have to suffer the pain of loss that I feared that we could end up facing.

This is where I got it all wrong, where I couldn’t see the bigger picture.

This weekend is the big L.O.S.T. (Limavady Outreach and Service Team) weekend. This used to be a major event in Leah’s calendar.

The theme this year is “Pointless”.

In this promotional sound bite, Leah’s boyfriend Nic asks “Are the dark times in life meant to show us that God’s our guiding light, or are they just pointless?”

Tonight I attended the L.O.S.T. event along with our two younger children, and a couple of hundred young people.

During the event Nic spoke for 10 minutes and explained how He became a Christian, how he met Leah at L.O.S.T. in 2012 and how God has helped him through Leah’s illness and death.

Early in 2013 he had applied to go on an Exodus Outreach Team that Summer. Something went wrong and his application never went through. He was very disappointed about this as he really wanted to serve God and he thought that this was how he could do this.

The very week that Nic would have been away on the Exodus Team turned out to be one of the weeks that he spent with us in Bristol, when Leah was very ill in the transplant unit. Nic said he knew that he was exactly where he was meant to be.

image

I will never forget how awful those weeks spent in isolation were and how much it meant to have Nic and his Mum travel over from Ireland to be with us.

Nic’s Mum wasn’t allowed in to visit Leah due to the strict rules of isolation, but she was company for me when I left Leah in Nic’s care.

How could Leah have coped as well as she did, for those incredibly difficult nine months from diagnosis to death, if she hadn’t Nic by her side, a pillar of strength?

Leah’s response to her diagnosis was to simply say “God has a plan for my life” and “We have to see the bigger picture.”

What a blessing it was tonight to hear Nic speak, in that hall full of young people and hear him tell them that everything that happened was part of God’s plan for his life too and that God had helped him and given him the strength that he needed.

As Nic spoke, the word that floated around in my head was “blessed” –  Leah’s illness wasn’t a blessing and her death certainly wasn’t a blessing, but how blessed was our daughter to have known the love of this fine young man in her short life.

After Nic had finished speaking we rose to our feet to sing a hymn of praise – In Christ Alone – by coincidence it was one of the hymns that we sang at Leah’s Funeral. We also sang it at Pip ‘n Jay Church In Bristol at the last ever Sunday Service that Leah was able to attend.

During the singing of this hymn Nic quietly made his way to where I was standing, to give me a hug and check if I was ok – why is life such a crazy mix of joy and sorrow?

In Christ alone my hope is found,

He is my light, my strength, my song;

This Cornerstone, this solid Ground,

Firm through the fiercest drought and storm.

What heights of love, what depths of peace,

When fears are stilled, when strivings cease!

My Comforter, my All in All,

Here in the love of Christ I stand.

Mummy They are Coming to Visit Us

Mummy They are Coming to Visit Us

By early February 2013 Leah was having weekly blood tests. She had also had her first outpatients appointment at the Sperrin Unit – our local adult Oncology/Haematology Department.

The staff who looked after us there were absolutely lovely. Our consultant there phoned the paediatric haematologist in the Royal Belfast Hospital for Sick Children to discuss Leah’s case.

Then he rang me to say that she had told him that Leah’s blood results weren’t consistent with any nasty bone marrow diseases. I didn’t believe her. I didn’t tell him this of course.

I recorded my fears in my diary and voiced them in my prayers. When I was on my own I cried a lot.

I reminded God that I had always hated the scary rides at the FunFair. I didn’t like adventure or risk taking – I didn’t even particularly like going away on holidays.

I just wanted to live a quiet life with my family, going on picnics, having Sunday lunch together and playing board games.

I also pointed out to God that a lot of the things that were happening to me were far removed from the blueprint that I had designed for my life. I was feeling way out of my depth.

However once Leah was diagnosed on the 19th April 2013 I knew this wasn’t something that I could get through in my own strength, I had to rely on God to get me through this.

One of the things I remember muttering under my breath at various times after Leah was diagnosed was “This is too much but HE is enough.”

So many times along the way since then He has provided for our needs by sending people to minister to us.

We received Leah’s diagnosis via a phone call on a Friday and we all had to go to the City Hospital in Belfast on the following Tuesday.

On the Sunday Leah said that some of her leaders from L.O.S.T. (Limavady Outreach and Service Team) wanted to visit us and wanted to know what time would suit? I replied “Leah, tell them no time suits.”

A while later Leah told me that one of the leaders had messaged her with a specific time and wanted to know if that would suit. I replied again “Leah, tell them that no time suits.”

Leah just looked at me and said “Mummy they are coming to visit us.”

Sure enough, a short while later, three people, two of whom I had never met before, arrived at our house.

They spent some time with Leah and my husband and me, talking about the devastating news that we had just received and the hospital appointment that we were facing that week. Then they prayed with us.

Before leaving, one of them said “Thank you for inviting us.”
I laughed and said “I didn’t invite you.”

Do you know something? Since receiving that awful phone call on the Friday, delivering Leah’s diagnosis, they were the first people who had come to our house to minister to us and pray with us. We really needed them and we really appreciated their visit.

It taught me something too. If I know that somebody is in bother and I feel an urge in my heart to visit that person, then I would rather follow the leading of my heart and take the risk of getting it wrong, than ignore the prompting of my heart and miss an opportunity to minister to somebody in great need.

image

Leah and her iPad

Leah and her iPad

One of the activities that Leah loved being involved with was L.O.S.T. – Limavady Outreach and Service Team. After we had received Leah’s diagnosis on Friday 19th April ’13, the first people to overcome their shock and visit us to support us and pray with us, were three of the L.O.S.T. leaders who came on Sunday afternoon 21st April ’13.

This was my husband’s birthday and our wedding anniversary, but we weren’t celebrating – we were too shocked and overwhelmed by the news that had been delivered to us over the phone at 4.30pm on the Friday.

We deeply appreciated the courage and Christian love shown by these youth leaders, in coming to minister to my husband and I whom they barely knew – their visit made a difference.

A few weeks later all the leaders involved with L.O.S.T. bought Leah a gift of a 3G enabled iPad. She had to buy a bigger handbag to accommodate it because it went everywhere with her.

image

This iPad was invaluable for the many long hours that Leah subsequently spent, as both an inpatient and an outpatient. Leah’s cousin bought her a subscription to Love Film so that she could watch films on it. Her aunt and uncle bought her a Spotify subscription. Wherever Leah went, this iPad went too and only the grave finally parted Leah and her iPad.

I love to listen to the Bible teaching of John Piper at desiring god.org. I know that some people consider John Piper too wordy and deep. For me, John Piper’s Bible teaching reaches the parts that other preachers don’t reach.

Today I was listening to a sermon by John Piper entitled “Ambushing Satan With Song” and I heard the following.

“January 8, 1956, Jim Elliot and four other young missionaries approached the jungle edge where the Auca Indians lived. Their last recorded act according to Elizabeth Elliot was to sing a hymn together:

‘We go in faith, our own great weakness feeling,
And needing more each day thy grace to know,
Yet from our hearts a song of triumph pealing,
We rest on thee, and in thy name we go.’

All five of them were killed that afternoon. But they, too, were protected by God—protected from a fate far worse than death. They were protected from cowardice and unbelief and fear. And I think it would be fair to say – protected with song.

We have two great weapons in worship: the Word of God and song. So let us give heed to the Word of God and let us sing with all our heart.

I thought about how Leah chose to listen to her favourite Christian music every day, using her Spotify playlist on her IPad, while dying in ICU. When the nurses came in to work with Leah I would lower the volume so as not to bother them, but they often told me that there was no need, as they liked listening to such lovely songs.

image

While Leah was taking her last breaths in the Children’s Hospice, her music also played. The doctor attending to her said the music was beautiful.

Throughout Leah’s wake at our home, Leah’s Spotify play list played softly in the background. Several people commented on the peaceful atmosphere.

I think we should never underestimate the importance of music in influencing our mood.

John Piper’s words reminded me of how our daughter faced death without fear. I think that listening to songs that encouraged her faith helped her to remain strong and courageous.

Leah and L.O.S.T.

Leah and L.O.S.T.

“God loves me unconditionally and when I hit rock bottom – He is the rock.”

image

Three significant things happened in Leah’s life over the last two days of 2012 – she turned 15, she had a blood test that changed our lives forever and she was interviewed on Roe Valley Christian Radio about what it meant to her to be a member of L.O.S. T. – the Limavady Outreach and Service Team.

Today I discovered the notes that Leah made while preparing for that radio interview and they are oh so precious.

image

imageimage

She quotes from her favourite Christian worship song at that time –

‘You Never Let Go’ 
By Matt Redman

“Even though I walk through the valley of the shadow of death
Your perfect love is casting out fear
And even when I’m caught in the middle of the storms of this life
I won’t turn back
I know you are near……….

Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me.”

Could any words have been more apt or more comforting for a girl who was very soon going to have a potential death sentence pronounced over her head?

image

Leah’s illness, death and her loss from our lives devastates us. Yet, the many clear signs that God was preparing her and strengthening her for all that lay ahead brings me comfort.

It did our hearts good 💕

It did our hearts good 💕

image

Luke 22:43 “Then an angel from heaven appeared and strengthened Him.”

I found a comfort today in this part of my daily reading based on Luke 22:43 – the thought that even Jesus needed an angel to strengthen Him during His days on earth is very encouraging.

The idea of praying for “the strength to make every sadness sing” also blesses me.

I was so emotional last weekend because it was the big LOST weekend and LOST was such a huge part of Leah’s life. Leah made it back to one LOST meeting after we returned from Bristol.

She was immune suppressed and I tried to persuade her not to go but LOST was so important to her. Here she is wearing her LOST hoodie. I thank God for the part that LOST played in Leah’s life.

 

image
I went to the LOST Family Service on Sunday afternoon past and then made an impulse decision to stay for the evening meeting which is really only for the young people. Kerry (Nic’s Mum) kindly stayed with me.

I was so blessed and encouraged by the uplifting worship music, by the young people taking part, by the main speaker and by Peter Thorogood’s testimony.

More than anything though I was so encouraged to see so many young people piling into the hall that extra chairs had to be carried in.

I found it strangely comforting that the theme song for the LOST weekend was a song that holds so much meaning for Leah and me – “My Lighthouse” by Rend Collective. At her funeral Leah’s coffin was carried out of the church to this song.

Rend Collective launched this song last summer 2013 at Soul Survivor & Momentum in Somerset. At the same time we were just north of Somerset in Bristol Children’s Hospital. We had an awesome friend in Bristol called Kirsty & she was down in Somerset at “Momentum“. Whenever she got back she couldn’t wait to tell Leah about Rend Collective’s new song and she played it for us on her iPhone – we loved it straight away 💕

Kerry and I were so glad that we stayed for the LOST meeting on Sunday night – it did our hearts good.