The Listening Life

The Listening Life

Today when walking down the corridor at work, I bumped into the specialist in paediatric palliative care who was enormously helpful to us in organising Leah’s end of life care.

Straight away I felt the pangs of heartache, as my heart was transported back to the 14th January 2014 in Belfast City Hospital. I silently asked myself “Must it always be this way, will there always be pain triggers waiting round every corner?” Then I remembered hearing recently that every event is actually 20% fact and 80% perception, so I started talking to myself in my head about how blessed we were to have had the support and expertise of this amazing woman and how much her input meant to us at the time. Within minutes I was feeling more positive.

A couple of hours later I was going down the corridor and I met her again. She stopped and asked me how I was. I looked in her eyes to see if she was just being polite or if she really wanted to know. Her facial expression told me that she really cared, so I told her the truth. She also enquired about each family member. I briefly told her about some of the ways in which we are struggling to rebuild our lives while battling the pain of grief and loss.

Then, just like she did in the corridor of the City Hospital 26 months ago, she hugged me and said “Let’s say a wee prayer.” For a few hallowed moments she quietly lifted up each member of my family to God in prayer. I felt God’s peace touch my heart.

She’s a very busy doctor, with a very busy agenda, but somehow in the middle of her very busy day she took the time to minister to my heart. How long did it take? Ten minutes perhaps? Yet it meant so much to me.

I felt blessed and encouraged by her actions, but I also felt challenged. How often am I so caught up with my own agenda – however good and noble that may be – that I allow no time for the unexpected, no time for ‘God’s agenda’?

A few weeks ago I was scrolling through the Facebook page of author Cheri Gregory  when my attention was caught by a quote from a book called The Listening Life: Embracing Attentiveness in a World of Distraction by Adam S. Mc Hugh.

The Listening Life 2

I immediately headed over to Amazon, where I read this about The Listening Life:

“Be quick to listen, slow to speak.” James 1:19 How would our lives change if we approached every experience with the intention of listening first? In this noisy, distracting world, it is difficult to truly hear. People talk past each other, eager to be heard but somehow deaf to what is being said. Listening is an essential skill for healthy relationships, both with God and with other people. But it is more than that: listening is a way of life. Adam McHugh places listening at the heart of our spirituality, our relationships and our mission in the world. God himself is the God who hears, and we too can learn to hear what God may be saying through creation, through Scripture, through people. By cultivating a posture of listening, we become more attentive and engaged with those around us. Listening shapes us and equips us to be more attuned to people in pain and more able to minister to those in distress. Our lives are qualitatively different indeed, better when we become listeners. Heed the call to the listening life, and hear what God is doing in you and the world.”

I was ‘hooked’ and ordered it immediately. When the book arrived I started reading with great enthusiasm and got as far as page 50, then unfortunately I got totally distracted by other books that I was reading simultaneously and forgot about The Listening Life. This is by no means a negative reflection on The Listening Life; I regularly have three or four books on the go at any one time and I dip in and out of each of them depending on my mood!

I absolutely love books, I only wish that reading them were as easy as buying them! However, today’s encounter reminded me of why I bought The Listening Life and how important it is to listen – really listen – to God and to each other.

P.S. Click here to read an excerpt from The Listening Life on Emily P. Freeman’s blog.

Beautiful People Do Not Just Happen

Beautiful People Do Not Just Happen

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That Thursday, like so many other days, is indelibly imprinted on my mind.

Our Belfast consultant had previously informed me that Leah’s medical details had been sent to the paediatric haematology team at Bristol Children’s Hospital and that they would be discussing her case that day at a team meeting, with a view to possibly accepting her for treatment.

I hated the thought of being so far away from home, but I had done my online research into the hospitals in Dublin, Belfast and Bristol. I had become increasingly convinced that Leah’s best chances of survival, humanly speaking, lay in her being accepted for treatment at Bristol Children’s Hospital.

I spent most of that Thursday afternoon quietly praying.

At 7.20pm our Belfast haematology consultant phoned me to inform us that Bristol Children’s Hospital had indeed accepted Leah for treatment. I was so relieved and so pleased.

Our first phone call from this doctor on Friday the 19th April had been such a negative experience.

Our first meeting with him had been even worse, but in this phone call I started to see him for the caring, compassionate man that he really is.

I eventually chased him off the phone, as I was sure that the poor man had probably not even had his dinner yet. He had given me all the time that I needed in this phone call.

The fourteen weeks that Leah and I spent in Bristol changed our lives forever.

Some of those changes are very sad, traumatic ones.

I hardly know how to word this, because I will NEVER be glad that my daughter suffered and died, yet I can still appreciate the many positive aspects of our time in Bristol.

I very much appreciate the amazing staff and patients and families that Leah and I met during our time there.

Although I’m heartbroken, yet I’m also enriched, by those that I’ve had the privilege of getting to know along this journey.

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Does God Answer Prayer?

Does God Answer Prayer?

Recently my husband was speaking to somebody whose wife had a cancer diagnosis and asked him how his wife was doing.

This man replied that his wife was doing really well and had returned to work. He finished off with the statement “God answers prayer.

That kind of took our breath away. Not the fact that his wife is doing well – we are very happy about that.

It’s him telling us that all of this happened because God answers prayer.

Do people think that we didn’t pray for Leah to be healed?

Do they think that our prayers weren’t good enough?

Or was it just a throwaway comment, expressing his faith in God and not in any way meant to undermine ours?

Once I had calmed down, I reasoned that the last explanation is the most likely.

We’ve encountered many and varied responses from people of faith to the fact of Leah’s death.

One leader in a church that I occasionally go to, informed me a few months after Leah died, that she had died because of “lack of faith”.

He then quoted the Bible verse

Mark 6:5 NLT
And because of their unbelief, he couldn’t do any miracles among them except to place his hands on a few sick people and heal them.”

You see, for some people, the illness and death of a child doesn’t fit into their neat “I’ve got all the answers” theology.

Even before Leah became ill, I never liked the idea of confining God to a denominational box.

In my opinion, God is way bigger than our pet doctrines and statements of belief.

Yes, I do believe in belonging to a local church and getting involved in the body of Christ.

The Bible says in Hebrews 10:25 GW

We should not stop gathering together with other believers, as some of you are doing. Instead, we must continue to encourage each other even more as we see the day of the Lord coming.

It’s just that I don’t like the idea that any one denomination has got exclusive rights to God.

I think that God is way bigger than the boxes that we sometimes try to squeeze Him into.

For the record, I do believe that God answers prayer. I continue to pray regularly for many people who are unwell.

I don’t know why some people get better and others die.

I don’t believe that Leah died because of “lack of faith”.

Leah herself certainly did not lack faith.

There were hundreds of churches and thousands of Christians praying and believing for Leah to be healed.

However, God isn’t like a genie in a lamp. It isn’t as simple as us just telling God what we want and then abracadabra – we want it, so we’ve got it.

The Bible says in Isaiah 55:8-9 NKJV

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There are some things in this life that are always going to be a mystery.

We have to see the bigger picture

We have to see the bigger picture

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On the 4th March 1969 Horace’s older brother David had his 15th birthday and became seriously unwell. This resulted in him having an appendicectomy and being diagnosed with a “progressive malignant tumour“. David was subsequently admitted to St Luke’s Hospital in Dublin and prayer was going up for his healing all over the world. Someone said “heaven is stormed with prayer”. Horace’s mother Charlotte stayed up in Dublin to be with David.

On the 17th July 1969 Horace’s mum read to David from Psalm 65, they prayed together and then he kissed her goodnight. At 5am the next morning David went to be with Jesus.

Charlotte said that “although grief-stricken, a great peace passed over me, the Peace that passeth all understanding – God had taken him home and now he was free from all his pain.”

Two years later Charlotte developed breast cancer. She went to be with Jesus on the 16th December 1982. Thankfully Charlotte wrote about some of these experiences in a little booklet that she called “Stepping Stones“. I have read and reread this booklet many times over the years. Leah also found it comforting to read. During Leah’s illness I took to carrying a copy in my handbag.

On Saturday 11th January ’14, for the first time since Leah’s admission to ICU the doctor told me that Leah’s chest X-ray showed a slight improvement. They had been telling me all along that Leah was unlikely to recover, but there were thousands of people all over the world praying for healing for Leah and I was hopeful. When I heard this positive news about Leah’s chest X-ray I was so sure that this was the miracle starting to happen and I was so happy – our little girl was getting better – she was going to live.

The next day when I went in to see Leah her condition had worsened and my heart sank. That evening I sat by Leah’s bedside, held her hand and reread Charlotte’s wee book. I read how heaven was stormed with prayer for healing for Horace’s brother David, but yet God chose to take him. I read these words written by Horace’s mother “This has cost me a lot to write but I believe it is what my Father wants me to do, hoping that it will help someone. By the way those four and a half months taught me many things. David and I grew very dear to each other. God is not only our Father, He is also a wonderful teacher and trusting in Him all must be well.”

There as I held Leah’s hand and listened to the swish of the ventilator pushing air into her lungs I silently prayed and asked God an almost rhetorical question “Lord, you aren’t going to heal Leah are you?

The next day the deterioration in Leah’s medical condition continued. At midday Leah had to be anaesthetised to conserve her oxygen levels. My sister in law Hannah unexpectedly paid me a visit. As we sat talking outside ICU Hannah looked me in the eye and said “What’s your gut feeling about Leah?” In that moment I had to face the truth. I whispered the words “I think Leah’s going to die.” Hannah put her arms around me and prayed with me.

This wasn’t me admitting defeat or giving up – this was a moment of acceptance. This was the moment when I moved from giving Leah the best possible quality of life, to being able to ensure that Leah had the best possible end of life care. I thank God for everyone He sent to help us along the way.

When Leah was diagnosed she said “God has a plan for my life” and “we have to see the bigger picture” – I think that “bigger picture” was bigger than even she could ever have realised.

Praying for a miracle?

Praying for a miracle?

I found this really helpful essay on praying for miracles…….

“It is one thing to be asked to pray for another person. I’m happy to do it. I want to do it. I must admit, though, I am not always faithful to do it. However, it is another thing to be told what to ask God for in the situation. I’ve noticed that often requests for prayer come with specific instructions on how to pray. I call it a “please pray for my predetermined positive outcome” request.
And while I’m questioning our accepted methods of requesting prayer, I’ve got to ask, why do we seem to make it our goal to get as many people as possible praying toward our predetermined positive outcome? Is it that we think God is resistant to doing what is good and right but can be pressured by a large number of people to relent and deliver? Do we think that the more people we recruit to pray for the same thing will prove our sincerity or improve our odds?”

Click here to read more Praying Past our Preferred Outcomes

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Grieve Well, With Hope. (for those who mourn Leah Whyte)

Grieve Well, With Hope. (for those who mourn Leah Whyte)

Andy Lamberton’s comments: Being deeply moved by Leah’s journey, I can’t help but respond, my prayers and thoughts are with you who knew and loved Leah. What a girl. What a testimony.

Click here for a link to Andy’s blog

A Phone Call Can Change Everything

A Phone Call Can Change Everything

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My name is Dr ….. and I work in Belfast City Hospital. Has anyone given you the results of Leah’s bone marrow biopsy?”

It was Friday afternoon the 19th April 2013. I had been sitting on my bed, typing up an assignment for a work related course that I was doing, when the phone rang. It was a withheld number and I had hesitated before answering, not wanting to be interrupted by yet another stranger’s voice trying to sell me a product that I neither wanted nor needed.

My heart started beating faster and breathing became more difficult. This was a stranger’s voice alright, and although he wasn’t trying to “sell” me anything, the news that he was delivering, was something that I neither “wanted nor needed”.

He told me that Leah had a type of bone marrow failure called myelodysplasia and that she needed a bone marrow transplant.

I asked him if he was a paediatric haematologist and he said no, that he was an adult haematologist.

So I said “Why are you ringing me then, Leah already has an adult haematologist who we like very much and we don’t want another one.”

He replied that he was also a transplant coordinator. I then said that we had been told that if anything sinister was found in our daughter’s bone marrow biopsy that she would immediately be transferred to the care of the paediatric haematologist at the Children’s Hospital in the Royal who had done the biopsy. Our daughter was only fifteen years old.

This doctor replied that she wasn’t available at the moment ( I found out later that she was on honeymoon but that there was other paediatric haematologists).

He went on to say that he wanted our whole family in his consulting rooms in Belfast on Monday.

I asked “Is my daughter’s medical condition so serious & so urgent that we have to come and see you so soon?” And he replied “Yes – but you can come on Tuesday if you prefer?

I then asked Leah if she would prefer to miss school on Monday or on Tuesday and she consulted her class timetable and said Tuesday, so Tuesday it was.

The reason Leah’s siblings were required was for “tissue typing” for a potential match for the bone marrow transplant.

Then he said “Miriam is only 9, she might be a bit young.” I told him that Miriam has very good understanding and she would most certainly want to be a part of anything that’s being done to help Leah.

I said “Please don’t make a difference in my children.” So he told me to bring all four of them.

I asked him where we had to go and he said “Well, you know where the Tower Block is at the City Hospital?” I was losing it at this stage and I said rather angrily through my tears “Why would I know where the Tower Block is? When in my entire life have I ever needed to know where your Tower Block is?”

He gave me more directions and the phone call ended.

Leah had been sitting beside me all this time, googling myelodysplasia and bone marrow transplant on her smart phone. That’s how she received her diagnosis.

I have to say, bad and all as that phone call may sound, it was wee buns compared to what we heard when we met the doctor face to face.

Nothing I read on the internet over the weekend was anywhere near as bad as what we were told when we got to that first appointment.

The phone call only told me that my daughter needed a bone marrow transplant and I knew very little about bone marrow transplants.

In that first appointment the doctor was so blunt about the implications of Leah’s diagnosis and consequently all the things that could go wrong before, during and after the transplant that we were left feeling that it was actually a miracle that Leah needed in order to survive! I write about this first appointment here.

It was a huge relief a week or so later when we got the phone call to say that Simon was a 10/10 bone marrow match as the Dr had said that if none of the siblings were a match then Leah would need a donor from the World Wide Registry.

He’d said that this could take up to 4 months and during the wait Leah’s disease could advance rapidly and her chances of survival could be greatly reduced.

A short while after this we also got word that Leah had been accepted by Bristol Children’s Hospital for transplant.

By then I knew that this was also good news as Bristol is a Centre of Excellence for treating rare blood diseases such as Leah’s and having her transplant there would greatly increase her chances of survival.

Gradually hope was being restored.

I have always loved the song “10,000 Reasons” by Matt Redman but it took on a special significance for me around the time of Leah’s diagnosis, especially the verse

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”

For me the challenge each day was to be still singing when evening came.

In those early weeks and months after Leah was diagnosed I found it almost impossible to pray or read my Bible – I wasn’t angry with God, I have never felt a need to ask “Why?”

I just felt so overwhelmed by all that was happening and so numb with shock that the only way in which I could engage with God was through listening to worship music and singing along.

I haven’t a note in my head and can’t sing in tune to save my life, but I used to get on my own in the house or in the car and put on CDs of worship music and sing to God with all of my heart. This helped me to connect with God and feel His presence with me.