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 School, Church, 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.
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.
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.
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.
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.
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.
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.
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.
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]
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
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.
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.
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.
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.
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.”