Breaking Bad News

As most of you already know, Leah’s first blood test was on her fifteenth birthday – New Year’s Eve 2012. She died 16th January 2014. Her illness spanned one year and sixteen days.

In effect, this means that every month contains some kind of ‘anniversary’ – these ‘hidden anniversaries’ vary in terms of painful intensity. I try hard not to dwell constantly on the past or ‘wallow’ in negativity, but some dates and events are so traumatic that they are very deeply etched into my brain.

Sadly, today is one of those dates, one of the many days that I wish I could erase from my personal history because it continues to feel so very painful. Three years ago today I answered a ‘withheld call’ and grappled to process the very unwelcome information that the stranger at the other end spewed in my ear. While I was conversing with this doctor, Leah, quiet and dignified, sat beside me and did an internet search of ‘myelodysplasia’ and ‘bone marrow transplant’ on her smartphone.

I did an internet search today to see what kind of information Leah might have been confronted with that day as she ‘googled’ while the doctor and I talked. The first article that came up was this one that states ‘Myelodysplasia syndrome is rare in childhood, and most children have a rapidly progressive course.’ The second one states that: ‘The disease is most common in adults, especially elderly people, and the course varies, ranging from an acute, rapidly fatal illness to a chronic, indolent illness.’ and ‘Infection, rather than progression to AML, ultimately results in the demise of most patients with MDS.‘ I had to stop there as I could no longer see through my tears.

Six days later, on Thursday 25th April 2013, Leah participated enthusiastically in her annual Girl’s Brigade display, just like she had done every year since she was three years old.

Saturday 27th April 2013, undeterred by her recent diagnosis, Leah had an amazing time away for the weekend with her Girl’s Brigade Company.

I’m told that hospital consultants ( and other senior staff) attend training sessions on how to break bad news to patients. To this day, it remains incomprehensible to me that anyone would think that it’s ‘acceptable practice’ to call a parent who you have never met and deliver such devastating news to a mother and child over the phone on a Friday afternoon.

Here is a portion of what I wrote in my journal later that day:

I did not ‘google’ anything at that stage – I was scared and I didn’t want to know. It was Sunday night before I became aware of how much Leah already knew. I then asked her to show me what she had been reading online and we talked about it together.

I never imagined that anyone but me would ever glimpse some of my journal entries or that a day would come when I would share my thoughts and feelings as openly as I do now. However, writing is therapy. I derive enormous comfort and encouragement from following the blogs of other bereaved parents and some who have been bereaved in other ways. Not in a voyeuristic sense of course, it just helps to know that I’m not alone and that I’m not going crazy.

I follow several blogs of people with a Christian faith and I also follow some blogs that aren’t written from a faith perspective. Sometimes I have the time to read all the blogs that I follow, other times I don’t and I periodically do a ‘catch-up’.

A blog that I have recently started following and that is really blessing me is called  thelifeididntchoose (Walking in the Valley of the Shadow of Death). Melanie writes regularly and her posts are reasonably short and they are easy to understand. She writes from a faith perspective and she is authentic and real about how difficult this road is that we walk on as bereaved parents.

This morning as I sought strength to face yet another ‘hidden anniversary’ I clicked on  Melanie’s blog post from Thursday 14th April 2016. I knew immediately that it was God’s word for me in my situation. She quotes from a book by Nicholas P. Wolterstorff entitled Lament for a Son.

If sympathy for the world’s wounds is not enlarged by our anguish, if love for those around us is not expanded, if gratitude for what is good does not flame up, if insight is not deepened, if commitment to what is important is not strengthened, if aching for a new day is not intensified, if hope is weakened and faith diminished, if from the experience of death comes nothing good, then death has won. Then death, be proud.

So I shall struggle to live the reality of Christ’s rising and death’s dying. In my living, my son’s dying will not be the last word. But as I rise up, I bear the wounds of his death. My rising does not remove them. They mark me. If you want to know who I am, put your hand in.

~Nicholas Wolterstorff, Lament for a Son

I read these words and thought “Yes, that just about sums up how I feel, both the positive and the negative!”

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.

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