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.

Advertisements
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.

f5_rc_weekend9

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.

a-grief-observed-quote-1

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.

IMG_4538

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.

Food.jpg

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’!

Swallowed by a Fish.JPG

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

 

When Your Family’s Lost a Loved One ~ A Book Review

When Your Family’s Lost a Loved One ~ A Book Review

Having finally got a few days to myself, I am disciplining myself to start working my way through the mound of unread books on my bookshelves. One of these books is When Your Family’s Lost a Loved One: Finding Hope Together  written by David and Nancy Guthrie and published by Focus on the Family.

N Guthrie book

Nancy and David Guthrie have one surviving son and they buried two children in infancy due to a genetic condition called Zellweger Syndrome . This is the kind of book that you could keep within reach for the first two or three years after a family bereavement, for all family members to dip in and out of, as they feel able. It is relatively easy to read, and very helpful. Nancy is a gifted writer and speaker. I was so blessed to have been able to hear her speak live in Belfast, last year, at the Irish Women’s Convention.

This book covers every aspect of family grief; such as preserving the marriage relationship, parenting grieving children, surviving holidays, displaying photographs and belongings of the person who has died, dealing with ‘well-wishers’, holding on to your faith, all discussed in a realistic and practical way.

The book also features interviews with others who have experienced different types of grief, such as the loss of a spouse, a parent or the loss of an older child to suicide.

This book is written from a faith perspective but in a sensitive way – we aren’t expected to smile and be happy just because our loved one is in a better place.

The closing chapter is entitled ‘Going On‘ and here Nancy writes:

“There comes a time in our grief that we realise we have to figure out how to keep on living, how to incorporate the loss into our lives. We want to feel normal again, to feel joy again. But even entertaining that prospect feels like a betrayal of the person who is gone……..If we choose to let go of the pain, or at least let it become manageable, it doesn’t mean we love the one we’ve lost any less. And it doesn’t mean that person’s life was any less significant or meaningful or that we will forget. Perhaps it’s not so much that we let go of our grief, but that we give our grief permission to lessen its grip on us.”

I have read several of Nancy’s books and always find them to be sensitive, helpful and easy to read. This book would make an excellent gift for any family who are seeking to navigate their way through grief in the context of a strong Christian faith. Nancy closes with the words:

Your loss has given you a new appreciation for life – and a new anticipation of eternity.

A discussion guide to use with this book is available here.

I Wondered How She Was Doing Now

I Wondered How She Was Doing Now

When you lose a child

A few days ago I found myself thinking about somebody who I used to know. She and I met at a Parents and Toddlers group sixteen years ago, but our paths hadn’t crossed in recent years. Her youngest daughter is around the same age as Leah.

Two years previous to us meeting up at Parents and Toddlers, her only son, a toddler, had drowned in a tragic accident. I was heartbroken for her. I could not imagine the enormity of her loss. However I always appreciated her openness and her honesty as she recounted to me the awful details of that day and the days that followed it, while our little ones played happily together and sang nursery rhymes.

She told me of how traumatised her older daughter was, from the events of that terrible day. She talked about the many ways in which grief was affecting her children and her marriage. She spoke about her efforts to source grief support for her children and how frustrated she felt at times about the suitability of what was available. Those were very difficult days for all of them.

This past week I unexpectedly found myself recalling these conversations and wondering what life was like for her and her daughters now. I wished that I could ask her how many years the sense of ‘brokenness’ had persisted.

Today when I was in Tesco paying for my groceries I noticed that she was beside me! We walked out of the shop together and chatted for several minutes. I asked her how her two girls were doing. It sounds like they are both doing really well. I’m so happy for her and for them. I asked her how she had coped with her older girl leaving home and the fact that her younger girl will soon be leaving home also; I got a very positive upbeat response – she’s really happy to see them both doing so well.

I wanted to ask her how many years it had taken her to actually start feeling okay again, but I wasn’t entirely sure that she knew about Leah’s death and I knew that I would just start crying. I really didn’t think it was fair to dump my emotions on her – she’s had more than her fair share of dark days. To be honest, maybe it was enough for me to know that they have all survived emotionally and that there is a light at the end of this dark tunnel.

His Grace.PNG

Remembering Merryn

Remembering Merryn

image

I am really struggling to put my thoughts into words after attending Merryn’s Service of Thanksgiving today.

Leah was diagnosed in April 2013 and some of the members of Merryn’s extended family immediately came on board in their support of us.

Then in July 2013 came the devastating news of Merryn’s diagnosis. I was very concerned, as I perceived Merryn’s diagnosis of neuroblastoma to be far more serious than Leah’s diagnosis. Well, none of us know just how these things are going to work out, do we?

A few months after Leah died in January 2014, our church organised a walk and a climb in memory of Leah to raise funds for Merryn. This raised £9,100 for the Merryn Lacy Trust

image

I followed closely the posts on Facebook written by Merryn’s parents. Recently, as I read these posts and looked at the photos of Merryn, my heart sank. I could see that Merryn was a very ill little girl and that her parents were hearing and seeing things that no parent ever wants to hear or see. Jenny and Michael did their best to inject hope and positivity into the posts that they wrote, but I could sense their heartache and their despair.

I remember the days of the ‘positive spin’. I can recall discussing this with another cancer mum when Leah and I were in Bristol. This mum and I agreed that the daily reality of caring for our very ill children and witnessing their suffering, was at times so harrowing, that there was no way that we could inflict the undiluted truth on the unsuspecting public.

‘Positive spin’ was a technique that we deliberately employed, to protect our friends and our family, from the full extent of how difficult and distressing our circumstances truly were. Of course, we also wanted to preserve hope – ours and everyone else’s. Hope was our lifeline. We became experts at finding hope, when humanly speaking, there was little to be found. I remember ‘celebrating’ and writing any day that I don’t get bad news is a good day, when an ICU consultant told me one day that there had been no further deterioration in Leah’s condition. After days of being consistently told that Leah’s condition was steadily deteriorating and that she was unlikely to recover, I clung to whatever hope I could find, all the while praying fervently for a miracle of healing.

I recollect sitting on the hard chairs outside ICU in Belfast City Hospital, writing updates about Leah’s medical condition, trying to be as honest as I could and give enough accurate information so that people could pray for us, but then also injecting as much ‘positivity’ as I could muster. I clearly recall writing the last update on Wednesday 15th January 2014 and thinking “Vicky, the time for ‘injecting positivity’ has come to an end, just tell it like it is.” With an aching heart I wrote the words that no parent ever wants to utter: “At present it looks likely that end of life care for Leah will be put in place tomorrow Thursday.

On Wednesday past, the 4th May, a friend contacted me at work to tell me that Merryn had died. I was heartbroken, I felt like I couldn’t breathe. I sat alone in a Clinic Room and sobbed for all who knew and loved this beautiful little girl.

image

Today, a white coffin was once again brought in to Kilfennan Presbyterian Church. Such a heartbreaking sight. I found it so hard to witness the pain etched in the faces of Merryn’s family members, knowing the road that they now must walk. This road of grief and loss and sadness.

There was comfort too, the comfort of friends, of family and of faith. In the weeks and months and years to come, Merryn’s family will need every ounce of this comfort.