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.
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.