Six Years On

Six Years On

Barrys

Every year I take the day of the anniversary of Leah’s death off work (annual leave). In the early days, I used to save up my holidays and take the whole week off, as I used to be totally incapable of functioning around this time. Thankfully I am now able to focus on my work on the days leading up to Leah’s anniversary, although every day I am of course very aware of what I was doing at this time in 2014.

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I decided to take out Leah’s Youth Bible (the one she used most) and have a look through it. As soon as I opened it I noticed that she had cut out her daily devotional  reading for Thursday 31st January 2013, laminated it and tucked it inside the front cover of her Bible. By the end of January 2013, Leah was having weekly blood tests at our GP surgery and had already had her first appointment at the Sperrin Unit; the Haematology/Oncology department at our local hospital. While we were in the Sperrin Unit Waiting Area, waiting to be called into that first appointment, I was devastated when a young nurse bounced up to us and casually asked us if we were waiting on chemotherapy. I was already very uncomfortable with the fact that our fifteen-year-old daughter had to attend an Outpatients appointment at the Haematology/Oncology Unit in the first place, but this suggestion/implication that our teenage daughter, who was so vibrant and full of life, could possibly be ill enough to ever require chemo, was more than I could bear to contemplate. Leah, however, took it all in her stride and chatted away cheerfully to the lovely Clinical Nurse Specialist who subsequently attended to us.

Anyway, I have digressed; the piece that Leah had cut out and laminated is entitled ‘No Accident’ and I thought that I would transcribe it here as it’s very good and I can see why Leah liked it:

 Marianne Williamson said “Love is what we were born with. Fear is what we learned here.” Families, friends and life experiences can create fears and limitations that hold us back. We go about life doing the best we can in this messy mixed-up world in which we live, but if we’re not careful we can allow these fears to take over.

We can live by the labels put on us by others: ‘not good enough, not up to the task, never make it, won’t succeed:’ we label ourselves; ‘useless, worthless, a mistake.’ These labels can cause us to live believing we don’t matter, our life is irrelevant and unimportant even unwanted. Nothing could be further from the truth.

God doesn’t make mistakes. You’re not here by accident! You ‘are God’s masterpiece. He has created us anew in Christ Jesus, so we can do the good things He has planned for us long ago.’ (Ephesians 2:10) “I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.” (Jeremiah 29:11) 

Don’t live a life of fear, receive God’s confident guaranteed hope for your life; He promises ‘Everything I plan will come to pass…’

Shake off your labels. Take time to think about what you believe about yourself. Are you walking around with negative labels attached to you? Look today at what labels God gives you in Psalm 139:14

 

Following this, I looked up Psalm 139:14 in Leah’s Bible. As I expected that they would be, these lovely verses were underlined. It gives me great comfort to think about these particular verses being special to Leah. Psalm 139 has long been one of my favourite psalms too.

Leahs Bible Psalm139

Shortly after Leah was diagnosed she told us “God has a plan for my life, we need to see the bigger picture.” Leah did not say this lightly, Leah was fully informed about the seriousness of her illness and the possibility that she might not recover from it. She struggled with many aspects of her illness, such as the loneliness and social isolation of long weeks spent being nursed in isolation, and the horrendous side-effects from her intense chemo treatment, but she sought daily to trust God through it all and she didn’t fear death.

I remember so vividly one of the occasions when Leah was critically ill on a ventilator in ICU and the doctors weren’t sure that she would survive the next 24 hours: I played “Our God is a Great Big God” on her iPad. Leah was too ill to even open her eyes but her face lit up in a big smile and her hands (despite being attached to various monitors) did all the actions (every single one) to this song – because Leah’s God truly is a great, big God.

 

What Song Are You Grateful For?

What Song Are You Grateful For?

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Occasionally I use Journaling prompts that I have downloaded and stuck into a notebook that I keep for this purpose. Today when I opened my notebook to do some journaling the prompt for today was “What song are you grateful for?

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However, instead of thinking of just one song I thought of many songs. Praise and worship music was a vital part of Leah’s illness journey for both her and I. Many times when we were lost for words, we listened to praise and worship music and we found that peace that passes all understanding.

I remember the first time that Leah developed neutropenic sepsis  and I had to rush her to our local hospital. I was really scared, I think Leah and her boyfriend were frightened too. None of us spoke during the twenty minute journey to the hospital but we were comforted as we listened to the words of the praise and worship songs that Leah played on the CD player in the car.

During Leah’s illness journey and in the aftermath of her death I often felt so broken that I was unable to concentrate to pray coherently or to read my Bible. Praise and worship music became my means of communicating with God. My soul was stilled in His presence as I listened to our favourite songs.

After Leah died I put together an extensive playlist that I listened to almost continuously. I kept headphones beside the bed so that I could listen to these songs during the night without disturbing my husband. I played them in the car whilst driving and on any other occasion when I was alone. Some of these songs were ones that Leah and I had both loved, others were songs that friends had suggested to me to after had Leah died, the words of which really ministered to me.

I’ve changed phones a couple of times since then and was having difficulty accessing my original 2014 playlist, so I have recently recreated it on YouTube. There have of course been lots more playlists created since then, but on certain occasions such as Leah’s anniversary I like to reconnect with those songs that meant so much to me during her illness and immediately afterwards, when I felt so broken. Maybe this playlist of songs will minister to the heart of somebody who reads this post:

Grief Changes Everything

Grief Changes Everything

ChristmasMeansMore

It’s almost four years now since Leah died and I still struggle with going on a shopping trip  on my own. Whenever possible I shop online or wait until one of my children (or my husband) is available to accompany me. However there are some occasions when I do have to go shopping alone. I try to keep these shopping trips as brief as possible.

In years gone by I loved shopping and my shopping trips often lasted for several hours, but it is definitely now something that I do very much out of necessity rather than for pleasure. Today was one of those days when I headed out alone to get a few bits and pieces. Life has been busier than usual lately, so my youngest and I haven’t had time recently to go on one of our regular joint shopping trips.

As soon as I entered Foyleside Shopping Centre I was immediately drawn to the beautiful sound of children singing. I instinctively moved in the direction of this sound until a choir of Primary School children sweetly singing Christmas songs came into my line of vision. This young choir was surrounded by other shoppers who had stopped to listen and by adoring parents capturing the moment on camera.

In an instant I was transported back to when I was that proud parent and Leah was a young girl in her Primary School choir. Leah loved to sing. Tears blurred my vision as my heart ached with longing to once again hear the sweet voice that every Christmas echoed throughout our house with the words of one of Leah’s favourite Christmas songs:

IT’S SOMEBODY’S BIRTHDAY

by Ian White

Crackers and turkeys and pudding and cream,
Toys in the window that I’ve never seen.
This is the Christmas that everyone sees,
But Christmas means more to me.

Chorus
It’s somebody’s birthday I won’t forget,
As I open the things that I get.
I’ll remember the inn and the stable so bare,
And Jesus who once lay there.
~
Everyone’s out shopping late every night,
For candles and presents and Christmas tree lights
This is the Christmas that everyone sees,
But Christmas means more to me.
~
Christmas morning, the start of the day,
There’s presents to open and new games to play.
This is the Christmas that everyone sees,
But Christmas means more to me.

Leah playing guitar1Dec17

My visit to Foyleside was brought to a swift ending – thirty minutes after I had parked my car I was back in it and driving away. Grief changes everything.

Operation Beautiful~One Note At A Time

Operation Beautiful~One Note At A Time

Tomorrow I’m leading Children’s Church – something I seldom volunteer for since Leah died. This morning I was scouring the house for our  Veggietales  DVD collection to use one of them in Children’s Church, when it occurred to me that some of them might be in Leah’s bedroom. As I was searching through Leah’s possessions, I found myself lingering, reminiscing, and grieving.

Sometimes people ask me whether it gets easier as time goes on? I’m not sure if the pain of child loss ever gets any less. What has changed as time goes on is my ability to deal with the pain. I’m gradually learning some coping strategies that enable me to live with the pain of child loss, so that I can, by God’s grace, live a relatively normal life most of the time.

Choose

There are some of Leah’s belongings that I haven’t looked through at all since she died. Today, while going through a few of those, I came across a booklet that she had received at  Girl’s Brigade called ‘Spiritual Sparkles‘.

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I know that being a part of Girl’s Brigade was really important to Leah and that she would probably have read this booklet from cover to cover. I found myself glancing through it as I thought about my daughter. My attention was suddenly gripped by this page:

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The ‘secret post-iter‘! That’s where she got the idea from! Leah was well known for writing encouraging notes on post-its and leaving them for others to read. In March 2013 Leah introduced this concept at the LOST outreach weekend for young people in Limavady.

Before we left Sam’s House in Bristol in October 2013, I was dispatched to the shops to buy her a packet of post-it notes. Afterwards one of our friends posted this on Facebook:

Sams House Post It (1)

After Leah died our eldest daughter Rachel showed me this post-it that Leah had stuck on her bedroom mirror:

Rachel's Post It

Leah also had lots of post-its stuck up around her own bedroom to encourage her as she recovered from her bone marrow transplant and battled GvHD (graft vs host disease). She struggled with the very unpleasant side-effects of high dose steroid therapy and chemotherapy hair loss and she needed all the encouragement she could find:

I Peter 3 v 3

I miss Leah’s little notes; every time I do a clear out I find some little card or note of encouragement that I received from her over the years. I cry for what I have lost, I thank God for what I have had and I carefully place each note or card in a Memory Box.

I think the idea behind Operation Beautiful  is really worthwhile. Their website explains their purpose:

The mission of Operation Beautiful is to post anonymous notes in public places for other people to find. The point is that WE ARE ALL BEAUTIFUL. You are enough… just the way you are!

I know that Leah was very concerned about the many negative messages that young people are getting and the effect that this is having on their self image and their self esteem. I can see why this simple concept would have really appealed to her. I think that it’s a lovely idea.

Missing Kylie by Mark Myers ~ a book review

Missing Kylie by Mark Myers ~ a book review

Those who know me well will know that I love reading and tend to buy more books than I have time to read. On the 7th April 2016 Mark Myers published his account of a two year journey ‘through the wilderness of no‘.

On the 9th April 2014, the youngest of Mark’s daughters, Kylie, aged 12, was diagnosed with Ewing’s Sarcoma. She had always been known as Smiley Kylie. Kylie fought her illness bravely for ten months. On February 13th, 2015, Kylie’s battered body succumbed to the disease. She left her family with two missions; take care of her kitten and kill childhood cancer so that no other child has to die.

Our daughter was also a cat lover, but sadly her beloved cat Charlie died on the road while Leah was having her treatment at Bristol Children’s Hospital. Apparently Charlie missed Leah terribly while she was in hospital, as he was so used to receiving lots of cuddles from her.

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Mark’s blog came to my attention just before Easter this year when I read his blog post The Empty Grave Conundrum. I wept profusely as I read, identifying with almost every word.

I tried to resist the temptation to buy his book Missing Kylie: A Father’s Search for Meaning in Tragedy as soon as it was released, as I have so many unread books adorning my shelves. I succumbed on the 12th April and I read it over two days.

Missing Kylie

This is one father’s account of  his two year journey from the day that Kylie received her diagnosis up to the first anniversary of her death. Kylie’s response to her diagnosis was similar to Leah’s; Kylie said “God must have a really big, great plan for me.” Leah lived nine months from her diagnosis, ‘Smiley Kylie’ lived ten months. Just like Leah, the primary cause of death cited on Kylie’s death certificate is respiratory failure.

Mark has three main aims with his book:

1) To share the story of his beautiful brave daughter Smiley Kylie with a wider audience.

2) To share his ‘messy faith’ with hurting people in a genuine and authentic manner.

3) To raise money and awareness for safer and more effective treatments for childhood cancer.

Mark achieves all these aims and more besides. This is a very readable book that I could not put down. I read it over two days. Mark is honest and genuine without giving unnecessary medical details that could make it difficult reading for those who are a bit squeamish. The love within this family of six is so evident.

I especially loved reading the letters that each family member wrote to Kylie on the first anniversary of her death. Mark concludes the book with three short chapters that contain guidelines for how to support a family who are dealing with a difficult diagnosis or life-threatening illness. One of these is entitled ‘What to say when there is nothing to say.’

I highly recommend this book.

The Bells of Christmas

The Bells of Christmas

Christmas bells

Christmas Eve – this time two years ago the rest of the family moved in to our new house. All six of us slept together under the one roof for the first time in six months. I went to bed feeling so happy, so content, so ‘full’.

Within four days the bells of Christmas had been replaced by the ‘bells’ of the monitors to which Leah was attached in the Intensive Care Unit where she had been admitted as a result of respiratory failure.

Leah in ICU


Every time Leah’s blood oxygen levels dipped, the monitors chimed and my heartbreak intensified. For the first five nights I slept in a chair beside Leah. During one of these nights there was a medical crisis and the monitors alarmed almost continuously. In the morning the staff looked at me in amazement and asked me how I had slept through the whole commotion. I shrugged my shoulders and gave a vague answer. In actual fact, I had been well aware of what was happening but I had kept my eyes closed and had held my daughter’s hand (whenever I wasn’t in the way) while praying silently. I was worried that if the staff knew that I was awake that they would put me out of the room and then I wouldn’t be there to comfort Leah.

Many days as I sat quietly holding Leah’s hand, with her favourite music playing softly in the background, the chimes of the monitors would intrude unpleasantly on our thoughts – reminding us of what we didn’t want to be reminded about – that Leah’s life hung in the balance.

Finally on the 16th January 2014, when Leah had been transferred to the Children’s Hospice for her end of life care, a monitor started to sound an alarm as the life seeped slowly from Leah’s body – swiftly and silently the doctor pressed the mute button on all of the alarms. We didn’t need them now, as sadly for us, the time had come to let Leah go peacefully into the waiting arms of her loving Heavenly Father.

Now I live and ‘celebrate’ Christmas in a dichotomy – one part of me is overwhelmed with the sadness of Leah not being here, yet the other part of me celebrates the birth of the Christ Child and the many blessings with which God has enriched my life.

Each one of our four children is a blessing in my life. My friends and my family who surround me with love and comfort are a blessing. Having a job that I love and work colleagues whose company I enjoy is a great blessing. I have a beautiful house which is a blessing.

Let the words of Chris De Burgh be my Christmas greetings to you, my faithful readers:

The Bells Of Christmas

If you know someone who is lonely this Christmas,
Reach out a hand and open the door,
Bring them inside in the spirit of Christmas
And show what lies in store;

If you know someone who’s forgotten that Christmas,
Will always shine in the eyes of a child,
Open their hearts to the memories of Christmas
And take them back in time;

So have a very Merry Christmas everyone,
Celebrate the coming of the newborn son,
Everywhere this happy day we have begun,
To ring the bells of Christmas;

Let the light that shines with the wonders of Christmas,
Fill every heart all over the world,
Let us believe in the spirit of Christmas
And dream of peace on earth;

So have a very Merry Christmas everyone,
Celebrate the coming of the newborn son,
Everywhere this happy day we have begun,
To ring the bells of Christmas;

Have a very Merry Christmas everyone,
(Ring the bells)
Celebrate the coming of the newborn son,
(Merry Christmas)
Everywhere this happy day we have begun,
(Ring the bells)
To ring the bells of Christmas,
(Merry Christmas)
Ring the bells, ring the bells!

 

Leah’s Parting Gifts

Leah’s Parting Gifts

During the week I was speaking to somebody who has recently been bereaved of somebody close to them whom they loved very much. We talked about their illness and their end of life care.

In the course of our conversation I discovered that their loved one had died on the birthday of the person who was speaking to me.

I was quite taken aback at hearing this. I was unsure of what to say. Somehow, in my mind, this seemed to make this person’s story even sadder.

Quickly in my mind I searched for what I thought would be an appropriate response to what I had just been told. I opened my mouth to sympathetically say “That must be very difficult for you.” but instead I asked softly “What did that feel like?

To my surprise, this person replied very positively that she saw it as a ‘gift’ – her loved one was terminally ill and in pain and she perceived it as her parting gift that her loved one’s body was released from pain and sickness on her birthday!

I have reflected much on this conversation since. The person I was speaking to was unaware of my circumstances and I think that was good, because it allowed her to speak freely without feeling uncomfortable or ‘worried’ about me.

Her positive attitude in the midst of her own obvious sadness and sense of loss has been helpful to me. I was reminded once again of how important ‘perspective’ is – how we frame a situation really does affect how we feel about it.

I was also reminded that grief and distress is such an individual thing and that we can never truly know the significance of any situation for another person unless we hold space for that other person to communicate to us what it means to them.

If I had replied with my intended response of “That must be very difficult for you.” I would have indirectly been implying that she should feel negatively about her loved one dying on her birthday – maybe then she would not have felt comfortable about telling me how she really felt. We would both have missed out.

Since this conversation took place, I have thought about the children’s story book Badger’s Parting Gifts, which I read many times to my children when they were small, to help them to understand and process death in a positive way.

This book describes how Badger’s friends were very sad after he died. Then they remembered all the special treasures that they had in their lives because of having had Badger as a friend and they drew comfort from this in their grief and loss.

Leah wasn’t old like Badger, she was only sixteen, but she has also left us so many gifts. I thought about listing some of those gifts here, but then I realised that – just like Badger and his friends – the ‘gifts’ that Leah left will be individual for each of you, depending on the capacity in which you knew her. 

Maybe you too would like to read “Badger’s Parting Gifts” – it’s narrated here in this Youtube video: