It’s been good to write

It’s been good to write

I recently had a long and very helpful conversation with a Christian friend who writes about her experiences as a bereaved Mummy and how God has given her the strength to cope.

One of the many things I found interesting in our conversation, is that she didn’t actually start writing until long after her children had died, whereas for me, writing has been one of my coping mechanisms.

When I mentioned this, she said something like, “I didn’t grow up in an era where it was fashionable to keep a journal.”
I laughed and replied “Well actually, neither did I.

I’ve been scribbling in notebooks since I was thirteen.

At home, or at summer camp, I wrote.

My peers sometimes found this unusual and I was at times questioned as to what all this writing was for.

My young self had no wise words with which to answer them.

I just knew that writing was how I coped, but I couldn’t explain this.

As I got older and life got busier, I stopped writing every day and I only wrote when I was deeply troubled.

Sometimes I wrote often, sometimes I wrote infrequently.

On the day that I received the phone call informing me of Leah’s diagnosis, I knew one thing for sure, that I needed to start writing.

I started a new notebook that very day. I chose a “Project Book” – one that was divided into five sections.
Section One was kept for hospital appointments. Before every appointment, Leah and I agreed what questions she wanted me to ask and I wrote them into this notebook.


It became quite a laugh at our appointments, as the doctors and nurses would glance anxiously at my notebook, to see if we had a full page, or a half page, of questions for them to answer.

I remember on one occasion in Bristol, our favourite Doctor was on duty. Leah and I were ready for him with a full page of written questions. He good naturedly accepted the armchair that we had pulled up to the bed in anticipation of his arrival. He knew that there would be no hope of escape, until every question had been discussed.

I’m so glad now to have all of these recorded memories.

Deep distress and trauma blurs our memories and can leave blank spots.

Many times since Leah has died, I’ve poured over my notebooks, trying to piece things together, trying to make sense of it all.

Sometimes I read things that surprise me, even now.

We received Leah’s diagnosis on Friday 19th April 2013. I know that I googled it that weekend. I’m a nurse so I have some understanding of medical matters. Yet, on Tuesday the 22nd April one of my written questions was “Is this 100% curable?” How could I ever have been so naive?

When I look back now I can see how hope/faith/denial can get all jumbled up.

That’s ok.

We have to stay sane.

We have to keep hope alive.

Many times over the years, in my work with families, my colleagues and I have wondered how parents can seem oblivious to how unwell/delayed their child is, when it seems so blatantly obvious to us.

Reflecting on my own journey through Leah’s illness and reading my own journals, gives me some insight into all of this.

Sometimes the truth is so painful, that we just aren’t ready or able to take it on board.

What the doctor told us on Tuesday 22nd April was awful, but within weeks I was able to bury it and move on a little bit.

Then in June, when we had our first outpatient appointment in Bristol, the consultant there told it to us all over again. I was nearly physically sick. I didn’t want to hear it. I didn’t want to believe it.

My writings tell me something else too though.

They tell me of God’s grace and His faithfulness and the loving kindness of the many people who have blessed us along the way.

One of Leah’s and my favourite Matt Redman songs says it better than I can:

Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful
You are faithful, God, You are faithful

Scars and struggles on the way
But with joy our hearts can say
Never once did we ever walk alone
Carried by Your constant grace
Held within Your perfect peace

Never once, no, we never walk alone

The Project Book also has a pouch where I stored some of the beautiful cards and written prayers that people sent to us, along with hospital appointment cards.


I kept one entire section for encouraging Bible verses and quotations that people sent to us.

Here’s two by Rick Warren that I found written in there:

The ultimate test of faith is not how loudly you praise God in happy times but how deeply you trust Him in dark times.

Job is a book of questions, most left unanswered. The most important one is this – will you serve God no matter what happens? 

For me, I can truly say, it’s been good to write.


Give us this day our daily bread

Give us this day our daily bread

The emergency ambulance was due to collect Leah from ICU at Belfast City Hospital at 9.30am on Thursday 16th January 2014 to take her and I to the N.I. Children’s Hospice where her life support would subsequently be switched off.

The day before that was very busy. It was only late evening on Tuesday 14th January that I had gained “agreement in principle” that Leah could leave ICU to die in the Children’s Hospice, but by Wednesday morning Leah’s medical condition was deteriorating so rapidly that the staff needed to act fast in order to fulfil our wishes.

Thankfully some of my favourite staff were on duty including two consultants who always communicated openly and freely with me. The doctor informed me that Leah may not live long enough to make it to the Children’s Hospice on Thursday and that there was a possibility that she wouldn’t even survive the journey there. He also said that she was too ill to be resuscitated.

I asked close friends & family to pray that Leah would be strong enough to make it to the Children’s Hospice, so as to have a peaceful & dignified death surrounded by those who had been closest to her in life.

A nurse who didn’t normally work in ICU was sent there for a few hours that Wednesday and she offered to make Leah’s handprint for me – I was so pleased. The small things become the big things at times like that.

Although the doctors had been telling me for well over a week that my daughter was unlikely to survive, they still seemed to struggle with letting her go. At 8pm on the Wednesday night two doctors asked our permission to do another washout of Leah’s lungs. Leah had been unconscious since Monday and was in no distress whatsoever.

One doctor carefully explained to us that another possible diagnosis had been suggested and he wanted to do a lavage to look for evidence of this. The downside was that Leah could die during the lavage and we wouldn’t have the hospice death we had planned. The positive was that if they found what they hoped for then they might well be able to save her life.

I had included Leah’s boyfriend Nic and my niece Ruth in the discussion with the doctor. The doctor was very careful to make sure that each of us understood everything. We unanimously decided to let the doctors go ahead. They allowed us to stay with Leah during the procedure so that if she did die, we would be there for her final moments.

The procedure did not harm Leah in any way, but they did not find what they hoped to find. I heard subsequently that the doctors were on the internet until midnight searching for some last ditch means of saving Leah’s life that had not already been thought of.

Predominantly I felt relief that Leah didn’t die during the procedure, rather than disappointment that it hadn’t worked – in my heart I knew that my child was going to die and that my role was to ensure that her death was as dignified as it possibly could be.

People say “How did you do all that?” Or “I couldn’t have done that.” Well if you’d asked me a year ago, that’s what I’d have said too. What I’ve learned is that God only gives you the strength when you are in the situation.

Most of you will have learned the Our Father/Lord’s Prayer as a child and prayed “Give us this day our daily bread.” Every day on this journey I have to rely on God for the “daily bread” of strength and grace for what I have to deal with.

When the the Israelites were in the desert they had to gather fresh manna every day and so do I, by spending time with God every day, even if it’s only for a few minutes. Matthew 4:4

The Israelites didn’t always like the manna – they wanted quail. Sometimes I’ve felt that way too. I would have much preferred the quail of God’s healing miracle in my daughter’s life, but God has chosen to sustain me with the manna of His comforting presence.

Leah and I always said that our “theme song” for the 14 weeks we spent in Bristol was Matt Redman’s song “Never Once”

“Scars and struggles on the way
But with joy our hearts can say
Never once did we ever walk alone
Carried by Your constant grace
Held within Your perfect peace
Never once, no, we never walk alone
Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful”