My Diaries

The other day I was listening to one of John Piper’s sermons and I was really blessed. I credit John Piper‘s teaching for having instilled within me a strong sense of the sovereignty of God which has helped me to cope with Leah’s illness and death.

In this sermon John Piper says:

There are three ways that God protects His people from danger.

1) Sometimes He prevents danger from even arising on the horizon of our lives.

2) Other times He allows the danger to attack, and gives us the victory so that we live on and serve Him in gladness.

3) But in the end one enemy is never driven off, the enemy of death. We will all die if the Lord does not return in our lifetime. But here, too, God protects. He protects us from unbelief, and preserves us for His heavenly kingdom.

Leah was in category 3 – God allowed her to suffer but protected her heart from unbelief. As she lay dying in ICU she was so peaceful and serene. Leah told her boyfriend that she wasn’t afraid to die. Although of course, she wanted to live if at all possible.

I guess that I am in category 2 – a category I would never have chosen for myself – I would have chosen category 1.

Since my early teens, one of the ways that I have used to cope with stress, is by writing in a diary or notebook. Sometimes I write almost daily, sometimes I don’t write for months at a time. It just depends on what’s happening in my life.

As soon as Leah was diagnosed, I immediately started writing. I’m so glad of this now. If I was relying on my memory, it would all just be a blur, because that’s what stress does.

I recently read through my diary entries from the early weeks immediately following Leah’s diagnosis.

We received Leah’s diagnosis on Friday 19th April ’13. On Saturday 20th April ’13 I was booked into a Ladies Christian Conference in Ballymagorry, Co Tyrone, organised by 1Vision Jesus. Leah was spending Saturday with her boyfriend so I went to the conference as planned.

The theme for the conference was “Walking in the Fire“. The speakers were Gloria Kearney and Carol Heron. I felt like I was walking in the fire alright.

There was an opportunity for prayer ministry during the day and I went to Carol and Gloria for prayer. They laid hands on me and while they were praying over me Carol received a vision:

Carol said that I was sitting in a room and everything was dark and in the vision I asked “Why is everything dark?” Then in this vision a screen started to play like a cinema screen with pictures on it and I saw things on it that I couldn’t see while the lights were on. Carol said that this suggested that I was entering into a period of darkness that would bring spiritual revelation into my life and that I would receive new knowledge (new to me).

These words still blow me away, although in a sad kind of a way.

On Friday 26th April ’13 I wrote the following words in my diary.

Then a few weeks later I wrote this:

Kirsty came and introduced herself to us during our first outpatients appointment in Bristol. She was a fantastic friend to us during the 14 weeks that we were there. She regularly brought me food parcels when I was on “lockdown” with Leah in the Bone Marrow Transplant Unit. She also gave me a lift to church, or arranged for someone else to pick me up, the Sunday’s that I was able to go.

I remember that day at the “Walking in the Fire” conference, lifting my hands in worship, as we sang one of the songs that Leah so often played on her iPod:

10,000 Reasons By Matt Redman

The sun comes up, it’s a new day dawning
It’s time to sing Your song again
Whatever may pass, and whatever lies before me
Let me be singing when the evening comes

[Chorus]
Bless the Lord, O my soul
O my soul
Worship His holy name
Sing like never before
O my soul
I’ll worship Your holy name

The Book

 

Thank you to everyone who has contacted me, with words of encouragement, regarding publishing my writings.

Producing and marketing a book of sufficient quality to sell to strangers as well as friends would require a lot of work and self discipline.

I need to grieve first.

A lot has happened in this past year that I have yet to process.

I returned to counselling yesterday.

I have written in notebooks all my life as a way of coping with difficult situations, but never before have I shown these writings to anyone, not even to my husband.

Since Leah became critically ill and died I have found an incredible release in being able to write on this page from the depths of my heart and receive such loving responses from my readers – frankly I have been overwhelmed in a very positive way by this.

Publishing a book about the Journey that Leah and I have been on this past year would expose my innermost thoughts and the life of my family to a much wider audience than just those on our Facebook page or those who access this blog.

Not only me but our whole extended family including Leah’s boyfriend Nic would need to be emotionally strong enough to cope with the exposure and vulnerability that publishing a book would inevitably bring.

In many ways this blog could be a “test run” for how we all would cope with so many other people knowing so much of what has gone on behind closed doors.

It hasn’t just been MY journey and if/when the time comes to publish a book then careful consideration would need to be given to the perceptions and sensitivities of others who have been intimately involved in this journey.

We all, in our own way, have to find meaning in suffering.

Mine is not an angry “Why has this happened to me Lord?” but a weak and tearful “Lord please show me how You want to use this awful experience in my life in a way that glorifies You and somehow helps others.”

If God’s purpose in all of this is the publishing of a book then He will give me the strength & wisdom to do so when the time is right.

 

“I know the journey is too great for you”

I don’t really have a plan to write on this “Journey” page on a regular basis, but some days the words just bubble up inside of me & overflow onto my iPad.

When Leah was battling with her illness I chose my words so carefully both for her sake & for the sake of our loved ones reading my posts, as I never wanted to take away hope or cause unnecessary anxiety.

Now there are days when I feel compelled to fill in the gaps & tell the story behind the story.

Some of you leave beautiful comments, saying that my posts are helpful.

I would love to think that the things that I share here could somehow be an encouragement to others in the trials of life.

Hopefully if what I have to say here is not helpful to someone then those people will vote with their feet (or fingers) & just not visit this page.

When Leah was first diagnosed she was given a gift of Rainbows for Rainy Days by its author Catherine Campbell who has buried two of her three children.

This book contains 40 devotional readings which we used in Bristol and then put on our bookshelf.

When Leah was admitted to ICU we decided to start using the book again.

On the 6th January Leah was critically ill and I was reading out loud to her from this book before the doctor came to give her a general anesthetic followed by a bronchoscopy and a lavage.

Our scheduled reading for that day was Day 5 based on 1 kings 19.

I was normally very good at controlling my emotions in front of Leah but my voice quivered with emotion as I read Leah the following

“God utters some of the tenderest words in Scripture to this broken servant – I know the journey is too great for you.”

The words seemed so relevant to Leah’s situation that I was overcome – concerned that these words might somehow have a deeper almost prophetic significance.

Leah was too weak to open her eyes but she heard the emotion in my voice and reached out her two arms and gave me a hug.

Yes, the journey was too great.

Leah said at the time of her diagnosis that God had a plan for her life and I believe that God’s plan for Leah’s beautiful life was fulfilled in the 16yrs and 16 days that she spent on this earth.

Although the emotional pain of losing Leah is worse than any physical pain I have ever experienced I wouldn’t bring her back because I know that she’s in a better place where her body is no longer broken.

Click here to visit Catherine Campbell’s website

A beautiful Life

Many people have thanked me for writing so faithfully on our “Journey” page on Facebook and have asked me “How did you do it?”.

For Leah and I, it was part of our coping strategy.

When Leah was first diagnosed and she found out that she would be going to Bristol for her treatment, I suggested to her that there may be times that she would be very sick and wouldn’t be able to keep her friends updated and that we needed some kind of private space that either of us could write on to keep people in the loop.

Leah and I chatted about this for a bit and then she set up the “Journey” page.

We quickly discovered that the communication was two-way as people posted encouraging comments, song suggestions, prayers and/or verses of Scripture for us.

The “Journey” page became a real life-line for us during some of our more difficult times in Bristol.

When Leah was in ICU in Belfast the rules of the unit allowed me to use my iPad but not my mobile phone while sitting with her, so the “Journey” page became a vital part of my support system.

One of the challenges when writing updates for the “Journey” page when Leah was in ICU, was to give enough information that people could pray intelligently for us but not to give so much information that I took away hope and generated panic.

While Leah was in ICU, I was told many times by the doctors that she was unlikely to recover, but I was hoping and praying for a miracle.

On Saturday 11th January 2014, when the Dr told me that Leah’s X-Ray showed a slight improvement (for the first time since admission) I thought that this was the miracle coming through and I was very excited.

When I arrived at ICU on Sunday morning the 12th January and Leah’s condition had deteriorated significantly, I started to realise “We aren’t getting this miracle” and my heart felt very heavy.

By Monday 13th January, Leah’s medical condition had deteriorated a lot more and I thought “My child is dying and I don’t want her to die in a critical care environment.”

I asked the staff about my options for end of life care for Leah, but apparently there weren’t any options – never before had any patient on a ventilator been transferred out of that ICU to spend their final hours elsewhere.

Thankfully God heard the cry of my heart and I was contacted by a good friend/work colleague from home, who put me in touch with an excellent Dr in the WHSCT who specialises in Paediatric Palliative Care.

She dropped everything and drove from Limavady to Belfast to discuss end of life options with me and the staff in ICU, at very short notice.

I said that obviously I didn’t want my daughter to die, but if death was inevitable, I wanted Leah to die in peace and dignity, surrounded by our large extended family. Leah was happiest when surrounded by the people she loved.

The lovely Dr from the WHSCT very graciously explained to the staff in the ICU how it was possible for Leah to be transferred to the Children’s Hospice for her final hours and she gave them the necessary names and contact details.

By Wednesday 15th Jan, Leah was very weak. The Dr on duty that day – it was the nice Cork Dr – advised that our end of life care plan needed to be put in place for Thursday 16th Jan, although he wasn’t convinced that Leah would live that long or that she would survive the journey to the Hospice.

I asked family and close friends to pray that it would be possible for our end of life care plans to be carried out, both for Leah’s sake and also for the benefit of those who loved her and needed an opportunity to say goodbye. Leah had been unconscious since Monday and she was in no distress.

The lovely Cork Dr and a lovely nurse came with Leah and I in an ambulance to the Children’s Hospice on Thursday morning 16th January 2014.

Some of Leah’s “surplus” tubes were removed before she left ICU.

Approximately 30 family members of all ages along with her boyfriend Nic and his family, were waiting for us when we got to the hospice. Our TYA (Teenage and Young Adult) Cancer Nurse Specialist and Clic Sargent Social Worker, who had supported us along the way, were with us too.

The Children’s Hospice was such a lovely calm, friendly, welcoming place. Leah was made comfortable in a pretty bedroom with a sign on the door that said “Leah’s Room“.

We were all able to spend some time with Leah and with each other, before it was time for Leah’s life support to be switched off.

The Spotify playlist on Leah’s iPAD was playing her Christian music softly in the background. Various people who loved Leah were holding her hands, stroking her arms, and stroking her head.

Leah was unconscious and peaceful.

The end of life process lasted about 40 minutes and different people noticed different songs that played during this time.

The song that stood out for me was “A Beautiful Life” by Mikeschair.

“A beautiful life is unfolding before my eyes
Just like the sun will rise to fill the empty sky, so shine
Oh, your beautiful, oh, your beautiful, oh, your beautiful life”