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.

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Lessons from a Sticky Plaster

Lessons from a Sticky Plaster

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Today I opened one of the notebooks that I used for note taking during Leah’s many hospital appointments in 2013. Immediately my eyes were drawn to a sticky plaster carefully folded into a heart shape.

I instantly remembered where it came from – it was Friday 14th June 2013 and the five of us (our eldest was away working in the USA) were on our first visit to Bristol Children’s Hospital. As on every one of Leah’s hospital visits, she had blood taken that day. This was the first time that Leah had genetic testing done and the subsequent results were very significant. We also gave our consent that day for some of Leah’s blood to be frozen and kept at the hospital for future research.

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After the nurse on Oncology Day Beds had taken blood from Leah she placed this cute sticky plaster with animals on Leah’s arm. Leah loved animals and she was very keen to visit Bristol Zoo or even make a return visit to Belfast Zoo – an ambition that was never realised sadly. Leah’s consultant in Belfast City Hospital informed her in mid December 2013 that her immune system could now cope with a trip to the Zoo. However with all the busyness of Christmas we did not have time to plan this before she died four weeks later – we always thought that there would be more time.

A few hours later this little plaster came off and Leah folded it neatly into a heart shape and presented it to me with one of her little smiles. I tucked it inside my notebook and there it sat until now. Another of Leah’s little ‘love notes’!

This also reminds me of God’s many ‘love notes’ to us. One of our favourite passages of Scripture to read during Leah’s illness was the last part of Romans Chapter 8. Leah and I drew great comfort from the fact that neither disease, nor chemotherapy, nor even death itself, would ever, could ever, separate us from the love of God that is ours in Christ Jesus.

Romans 8:38-39
“And I am convinced that nothing can ever separate us from God’s love. Neither death nor life, neither angels nor demons, neither our fears for today nor our worries about tomorrow—not even the powers of hell can separate us from God’s love. No power in the sky above or in the earth below—indeed, nothing in all creation will ever be able to separate us from the love of God that is revealed in Christ Jesus our Lord.”

Broken yet Blessed

Broken yet Blessed

Esther's Tree

This morning as I sat having my Devotional Time, I looked up and there across the room I saw it – the beautiful miniature Christmas Tree that Esther Scobie had made us for what would be Leah’s last Christmas. My youngest had decorated the room after I went to bed last night! Little did any of us know in December 2013 that it would also be Esther’s last Christmas.

Tears spilled down my cheeks as I remembered the many thoughtful cards and notes that I received from Esther over the years, but especially during Leah’s illness. It is so hard to say goodbye to the special people in our lives.

Yet how blessed I am to have known Esther and how blessed I am by the many other beautiful people that God has brought into my life – some for a short season and some for the long haul.

Philippians 1:3
“I thank my God upon every remembrance of you”

Another First

Another First

Since downloading a step counter onto my phone a few weeks ago I’ve become a lot more aware of how active I am (or otherwise) on different days throughout the week. Comparing my ‘steps’ with other family members also allows for a little ‘competitive edge’!

So this evening, after a rather sedentary weekend, I headed out to walk the three mile ‘square’ around where we live. Within minutes I realised that this was the first time since before Leah became ill in 2013 that I had headed out on my own to walk the roads around where we live.

Field

When my mother died in 2008 in her eighties, I was quite aware of the many ‘firsts’ in that first year after she died. The second year after mum died was definitely a lot easier than the first. Losing a child has been very different; even three and a half years later it feels like there are still so many ‘firsts’ that I have to face, because to have faced them before now would have been too painful. I used to enjoy cycling the country roads where we live during the summer, both alone and with the children, but I have never been back on my bike since Leah died. That’s just one of several activities that I once enjoyed, but that I now avoid doing. Sometimes it’s easier to stay in the ‘safe zone’ than to do things or go places that are likely to trigger a grief reaction.

About half a mile into my walk I came to the field with the donkeys. A friendly donkey walked right over to the ditch where I was standing – just like the donkeys always used to do when I stopped there with Leah and her siblings.

donkey

This seemingly innocuous act caught me completely off guard – for a split second I was back in 2012 and everything was like it used to be – going for walks with the children and stopping to engage with friendly donkeys. Then a flood of emotion hit me along with the realisation of how much has changed since I last stood there looking at a donkey. I found it very difficult trying to process it all. I was glad of the quietness of the evening as I wrestled with my emotions and the tears fell freely.

About a mile or so further on, I encountered some sheep. They weren’t as friendly as the donkey, but some of them stopped to look at me.

Sheep 1

As I thought about these sheep, I reflected on these words from Psalm 23  which is a psalm that I especially like:

The Lord is my Shepherd,

I shall not want,

Sometimes, when I’m very stressed, I repeat these words inside my head to remind and reassure myself that God is my Shepherd and that He has promised to take care of me. At times I recall how Leah used to sing the Stuart Townend version of this psalm  with the Girl’s Brigade choir and how her face used to radiate joy when she was singing. Listening to the words of this song brings me comfort too.

Wrestling with God

Wrestling with God

One of the devotionals that I regularly use during my daily time with God is the First 5 app  from Proverbs 31 Ministries. This app is free to download and is compatible with iOS and Android. The First 5 app provides written Bible teaching Monday through Friday, with a teaching video every Saturday that includes a summary of the learning from the previous week.

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A few weeks ago the weekend teaching was based on 2 Corinthians 12: 8-12 and was presented by Lysa TerKeurst, who is president of Proverbs 31 Ministries. Her message was entitled Perseverance through Pain. Earlier this year Lysa had a significant health scare which resulted in her undergoing surgery to remove half her colon. The results could have been devastating, but she has made an excellent recovery. At the time Lysa wrote on her public Facebook page:

I have no words. Except “thank you.” Thank You, God. Thank you friends who prayed me through this. Thank you to this surgeon who finally figured out why I was in excruciating pain for days and days in that hospital bed.
Thank you that I still get to do life.

In her weekend teaching Lysa referred to her recent illness and recovery and talked about finding joy during difficult times and about the gift of experiencing God’s grace despite the pain. However Lysa is very clear that she doesn’t want to offer ‘easy answers’ to those who have prayed for healing for themselves or their loved ones and instead of God saying ‘yes’ He has apparently said ‘no’. Lysa talked about the death of her sister as a result of ‘a medical tragedy’. She said that after her sister died, she very much did not want people to offer her ‘easy answers’ as to why this tragedy had happened, because she needed space to ‘wrestle well’ with God.

Lysa’s phrase about wrestling well with God really resonated with me. I’ve written here before about wrestling with God. I don’t feel that I ever ‘lost’ my faith during Leah’s illness and death, however I have ‘wrestled with God’ over it all and I continue to do so as I seek to reconcile the events that have taken place, with what I believe to be true about God and about life. Tragedy and suffering definitely alter the lens through which everything is viewed.

Last weekend my husband and I watched the film Shadowlands, which is based on the romantic relationship between Oxford academic C. S. Lewis  and American poet  Joy Gresham, her death from cancer, and how this challenged Lewis’ Christian faith. We had previously watched the film when it was first released in 1993. This time round we found the film absolutely heart-breaking and we could identify with so much of it. However our recollection of watching it on the previous occasion many years ago, was of it being a ‘nice love story with beautiful scenery and a sad ending’!

There is a part towards the end of the film (at 1hr 55 min) after Joy has died when C. S. Lewis is grieving deeply and he joins his academic friends/colleagues at a social gathering. Lewis says to his friends:
I wasn’t going to come tonight but then I thought I would.”
One of his friends responds:
Life must go on.
Lewis’s answer to this comment begins with the line:
I don’t know that it must, but it certainly does.
He then entreats his friends with the words:
Don’t tell me it’s all for the best.
Undeterred by Lewis’s heartfelt plea, one of his friends (one who wears a clerical collar) begins to give him a theological explanation for what has happened. At this point, C. S. Lewis, overcome with emotion, shouts at his friends, then apologises and quickly leaves. His parting words, said under his breath are:
I just wanted company tonight.

My husband and I have no recollection of this scene from the first time that we watched Shadowlands, but needless to mention, it impacted us greatly this time around. Although I feel greatly blessed by the many people that I have in my life who understand grief and loss and who continue to provide emotional support whenever I need it, I could also relate to this scene in which C.S. Lewis just wanted his grief and loss acknowledged and didn’t want to be offered ‘easy answers’. The scene is so heartfelt and poignant.

C. S. Lewis is also an excellent example of someone who knew how to wrestle well with God. His books continue to inspire long after his death and he is often quoted by other writers and speakers.

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The 2014 Calendar

The 2014 Calendar

In October 2013 when Leah and I were packing to leave Bristol, one of the families that we had become close to gifted us a 2014 calendar containing beautiful colour pictures of Bristol. During our fourteen weeks there, I had fallen in love with Bristol – well, as much of it as I had seen anyway. I really appreciated this thoughtful gift, as well as their friendship.

Bristol Calendar

A place of honour was found on the walls of our new home for this picturesque calendar. However, January 2014, the first month in that calendar, sadly brought with it the death of our beautiful daughter Leah.

Leah in a hat 2012

We never discovered what beautiful scenes of Bristol were displayed alongside the other months, because to this day that calendar remains open on January 2014, still hanging on our wall, frozen in time.

January 2014

To my knowledge this was not a conscious decision on anybody’s part, nor do I recall us ever discussing this as a family. It just is. Other calendars get turned over monthly and removed at the end of the year. When the time is right this calendar will come down too, just not yet.

Next month I will fly to Bristol with the one who hasn’t returned there since donating his bone marrow in the hope of saving his sister’s life.

Leahs study area
Leah’s study area

We are going there for the University  Open Day as he has expressed an interest in studying there next year. I’m quite familiar with the university quarter of Bristol: Sam’s House where Leah and I stayed when she wasn’t in hospital is adjacent to some of the university buildings. While Leah was busy studying for her GCSE’s at the study area that she had set up in our bedroom, I used to occupy myself with going for walks around the local area.

Although my children are grieving, their lives are going on and moving forward and that is just how it should be. Leah would never have wanted it any other way. Our eldest moved to live and work in England last week. We miss her but I’m just so proud of her. The day that she left N. Ireland I received lots of supportive messages from friends, which I really appreciated. One of the most encouraging messages that I received was this one:

Well done that, in spite of all your family have been through, you have raised a girl with an adventurous, independent spirit which you are nurturing. There will always be a part of her that will never leave home. Bon voyage.

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An Unexpected Treat

An Unexpected Treat

We weren’t expecting to be able to avail of a therapeutic short break for bereaved families at Daisy Lodge this Summer. We had the privilege of being there for Mother’s Day earlier this year. We also had the opportunity of a short break there the past two summers. We felt that now that it’s been over two years since Leah died, that maybe it was time for us to step back and let other more newly bereaved families benefit from this amazing facility.

Then last Wednesday, out of the blue, we got a call to say that there had been a cancellation and they were offering us the option of going there at the weekend, if we were available.

My heart leapt with excitement. I quickly scanned both my work calendar and my personal calendar. Thankfully any commitments we had were ones that could easily be rescheduled. Simon unfortunately was unable to accompany us and Rachel couldn’t stay the entire Friday until Tuesday, due to her work commitments. Other than that we were good to go.

I couldn’t stop smiling for the remainder of the week, eagerly anticipating this most unexpected treat. When we first went to Daisy Lodge in 2014 I found it a very emotional experience. I probably cried for most of our first stay. Just being there was such a stark reminder of the journey that we were now on, one that I definitely didn’t want to be on.

However I now primarily look on Daisy Lodge as a place of healing for me and my family. A place where each of us is helped to relax and to heal, a place where we are encouraged to have fun interacting with each other, to feel like a family again, after the trauma of witnessing Leah endure such gruesome treatments and then eventually die. Daisy Lodge is a place where we feel supported, both by the compassionate staff who are on duty 24/7 and by our interactions with the other families who all walk a similar road. A place where no explanations are ever necessary.

Daisy Lodge.jpgI know from talking to other bereaved parents on private forums, that the devastation of child loss often results in the fragmentation of family relationships. A therapeutic short stay at Daisy Lodge goes a long way towards the healing and rebuilding of these fragmented relationships.

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On one of the days during our stay this past weekend, we went into Newcastle to the Pleasure Lands Amusement Park (Rachel’s boyfriend Matt also joined us that day). Horace’s face was a study as he and the ‘kids’ spun wildly on the Waltzers. It was his turn to laugh at my facial expressions when I went on the Roller Coaster with Rachel and Matt.

Amusements

Despite all the spinning around, our stomachs were settled enough to indulge in some award winning Maud’s ice cream while we were in Newcastle.

ice cream

That night there was a “Photo Booth” back at Daisy Lodge, where Horace and I were ‘swallowed by a big fish’!

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On Monday morning Horace and I enjoyed a trip to the nearby Burrendale Hotel swimming pool and spa. I tried to compensate for all the wonderful food I’d been eating all weekend by swimming 22 lengths of the pool, but before you start thinking that’s really impressive I need to tell you that it’s quite a small pool, not an Olympic sized one!

Monday afternoon saw Horace and I engaging in archery – the last time I recall shooting with a bow and arrow was while staying with my cousins in Clonmel, Co. Tipperary, when I was about ten years old. We used to make our own bows and arrows in those days, then climb trees and shoot. The ones at Daisy Lodge weren’t homemade of course. I was so engrossed in competing against my husband during the archery session that I forgot to take any photographs, but he beat me anyway!

Monday evening the four of us participated in a craft activity and worked together to produce these:

Craft Activity

Tuesday morning it was time for the four of us to say a fond goodbye to the staff and the other families. We were by now well rested, well fed, refreshed and ready to face the world again. Thank you to the Cancer Fund for Children for once again refuelling us on this most difficult of journeys.

God on Mute