Five Years

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It has been five years since I last heard her voice, received one of her handwritten notes, or exchanged a hug with her. In some ways, this feels incomprehensible to me. When friends and work colleagues ask “How many years is it now?” I generally reply “She died January 2014”. I struggle to actually say out loud that it’s been five years. My mind cannot process the fact that I have lived five years without our brown-eyed, second-born daughter, with her heart-shaped nostrils and her infectious laugh.

The other night Leah was alive in my dreams and we were again a family of six, laughing and talking together- it was so lovely. I awoke to the stark realisation that she is not here. It reminded me of those early days after Leah died when I woke up each morning to a fresh awareness of grief and loss.

This academic year Leah’s friends are celebrating their 21st birthdays and several of them are graduating from university. Many of them still keep in touch with me and I really appreciate this. I enjoy seeing their posts on social media and I’m happy to see them doing well.

Looking back over the years since Leah left us, I would say that the first year was awful. The second year was, if anything, even more, awful than the first. The third year was also really, really, hard.

However, by the fourth year, we as a family had begun to pick ourselves up and dust ourselves off. I wouldn’t say that we started to “move on” or “get back to normal”, as this will never happen. However, we have gradually found ourselves more able to have fun and enjoy life together again. Activities and destinations that had felt too painful before, gradually began to feel possible again. This past Christmas we stayed at home together on Christmas Day for the first time since Leah died, and it was good. Previous years this would have felt too painful – we have been spending Christmas Day with our extended family since Leah died.

Every grieving person’s timeline will be different. There is no magic formula for grief. I still have no-go areas; activities and destinations that are just too painful to attempt as yet. We are blessed with a large supportive extended family, some of whom gather with us each year, for Leah’s anniversary and her birthday, to help us celebrate her life. I have fabulous friends and work colleagues. Being a Christian helps, knowing that I will be with Leah again after I die. We as a family have also benefitted greatly from the support of organisations from within the voluntary and charitable sector.

Nevertheless, there are still some days when it feels like nothing helps, some days when the littlest thing knocks the scar off the wound of grief and there I am, raw and bleeding, completely distraught yet again. The really bad days are much less frequent than they once were, but my tears are never far away and it doesn’t take a lot to bring them on. Tears can be a release though and sometimes it’s good to let the tears flow. I draw comfort from what a blessing Leah’s life was and how fortunate we were to have had her in our lives for sixteen years.

Leah loved being involved in Children’s Ministry and her plan for when she left school was to train to work with children and young people. I will never forget her face lighting up as she attempted to do all the actions to a popular children’s Bible song that I played on YouTube during one of the days that she was critically ill on a ventilator in ICU. In church last Sunday we sang a catchy children’s song that was new to me. I immediately thought about how much Leah would have enjoyed this song and how she would have probably sung it around the house. Have a listen, maybe you will find yourself singing along too:

I Am Special

(Pauline Pearson, Andrew Pearson)

I am special, loved, accepted and forgiven
I am the apple of God’s eye
I am special, loved, accepted
Special, loved, protected
And I don’t even have to try

He loved me before the world began
He calls me by my name
His love will last for all time
And will never, ever change
Never change

The Greatest Gift

On the 1st of December I came across this set of 25 downloadable notecards  by Ann Voskamp, extracted from her popular book The Greatest Gift. There’s one for every day this month, up to and including Christmas Day.

Ann Voskamp is also the author of the bestseller One Thousand Gifts: A Dare to Live Fully Right Where You Are which spent sixty weeks on the New York Times Bestseller’s List. I write about my experience of reading ‘One Thousand Gifts’ here.

When I looked at Ann’s daily notecards for Advent and read them, I decided that I would like to share one each day on my Facebook page and Twitter feed.

I’m not sure if any month of the year is particularly easy since Leah died, but December, with its extra emphasis on communal happiness and family togetherness, is especially difficult.

This year, December brings with it the second anniversary of Leah’s final hospitalisation on the 27th December and her eighteenth birthday on New Year’s Eve.

I find that these little thoughts for Advent by Ann Voskamp are just enough to catch my attention and to hold in my head – they are neither too long nor too short. They help me to remember that Christmas is Jesus’ birthday – something that meant a great deal to Leah. Read this blog to find out more about one of her favourite Christmas songs.

I was shopping today – something that I’ve consistently struggled with since Leah died, as she loved shopping so much and was my frequent companion on shopping trips.

I was shopping in Belfast, the place where Leah and I spent so much time together while attending hospital appointments. Today, when I bought something to put on her grave on her 18th birthday, my tears started to fall once again.

However as I sobbed quietly, I told myself that this wouldn’t be the day when I would lose myself in sadness. I let the tears fall as I walked with my head bowed through the hordes of Christmas shoppers.

I remembered something of what I had read much earlier today. As I walked I gave thanks for the lives of each one of our four children – including the one whose life was cut short, the one who was only given to us on loan.

I prayed and talked quietly to God in my heart and I felt His comfort.

The Empty Chair

On the eleventh of November 2013 Horace, Rachel, Leah and I went to IKEA in Belfast to buy some bits and pieces for our new house. Leah wasn’t allowed in public places because of her immunity, but IKEA that Monday morning was almost deserted, so we felt that it was safe for her to come with us. Leah loved shopping.

It was a challenge to fit both the people and all the purchases into our car afterwards, but my husband is amazing when it comes to packing the car. It comes from years of practice being married to a woman who doesn’t ‘travel light’!

Amongst the items we bought were six folding kitchen chairs. Why did we need six? Because, in 2013, we were a family of six – two parents and four children.

Now, unless we have visitors, one of those kitchen chairs remains folded, unused, in our Utility Room. Now that it’s December, we are once again in the season when for many families there is a heightened awareness of the empty chair.

Along with our awareness of an empty chair, we will have Leah’s eighteenth birthday on New Year’s Eve and the second anniversary of her final hospitalisation and her death in December/January.

This morning I read a blog post by John Pavlovitz and he says it better than I could in his recent blog post entitled Holidays and Empty Chairs: 

“The holidays are a time for recognizing our profound fullness, of purposefully dwelling on the abundant overflow we find ourselves in and being grateful.

Our houses and our bellies bulge to capacity and we gleefully overindulge in food and friends and laughter. We fill ourselves to bursting with all the things and the people that make life glorious and make the pain bearable.

This is a season where we inventory our lives and readily acknowledge all that is good and sweet and right.

It is about celebrating presence.

But not for you. Not right now.”

Click HERE to go to his blog and read the rest of this post.

 

Surviving Christmas

Christmas – the time of year that most bereaved people dread. With its emphasis on family life, traditions and togetherness, the bereaved feel the loss of their loved one more keenly than ever and the empty chair is at it’s most conspicuous. For those whose loved one became ill and/or died around Christmas – well, it’s even harder.

Christmas has been evident in the shops for quite a while now but it was partly camouflaged by the Halloween stuff. Now that Halloween is over, there is no holding back – the commercialised side of Christmas is in full swing.

I went into my local Chemist today to collect a prescription and was confronted by all their Christmas stock – the tears started to sting my eyes. Leah loved Christmas, she would have loved looking through all the gift sets on display, selecting gifts for friends and family.

I was unfortunately a captive audience in the Chemist today, due to having to wait for the prescription. My emotional distress started to escalate.

The sales assistant was pleasant and friendly. She suggested that myself and another customer try out some perfume samples while we were waiting. This was just too much for me, Leah loved perfume.

There was a delay on the prescription so I excused myself and headed for the privacy of my car, pulling up my hood as I walked, to shield my tear stained face from passers by.

Last Christmas the Northern Ireland Cancer Fund for Children gave us tickets for our whole family to go and see Peter Pan in the Millennium Forum in Derry.

We had to get special permission from Leah’s consultant for her to be allowed to attend, thankfully he said yes. Now that the children are older (aged 10 – 19yrs at that time) it was relatively unusual for all six of us to do something together away from the house.

Miriam, our 10 year old, was particularly excited. On the way there she said “Mummy, is this the way it’s going to be from now on? Are the six of us going to be doing more things together as a family?” I replied happily “Yes, that’s right.”

During our 14 weeks in Bristol, Leah and I had missed our family so much, that family togetherness was now even more precious than it had already been. That pantomime turned out to be the last thing that the six of us went to together.

We arrived a bit early because my husband dropped us at the door and then went off to park the car. This explains the empty seats and the preoccupation with mobile phones!!

There were other families at the Pantomime also who were battling childhood cancer. During the interval I was chatting to another family, their wee boy was called Niall. He sadly lost his battle with the illness in April ’14.

I think it’s fantastic that charities like the Northern Ireland Cancer Fund for Children help families like us to make happy memories with our ill children, when things like pantomimes are the last things on our minds.

Two weeks before Christmas my sister-in-law asked if any of us wanted tickets for the community carol service in the Arts & Cultural Centre in Limavady on Monday 23rd December. I said no, thinking that Leah was too unwell to attend, but of course you couldn’t keep her down ( or in) – it turned out to be the last function that Leah ever attended.

Leah really enjoyed attending that Carol Service and I’m so glad that she went. Her sister brought her home but by the time they got to the house, Leah was crying with the pain from her spinal fracture. Earlier that month an X-ray of Leah’s thoracic spine had shown a small spontaneous infracture between T6 & T8. Leah was at times totally incapacitated by the levels of pain that she was experiencing. We were told that this level of pain could not be explained by such a tiny fracture.

On Friday 27th December Leah became very unwell and had an emergency CT scan of her lungs which resulted in her being admitted to the Cancer Centre at Belfast City Hospital. On Saturday morning 28th December Leah was crying with the pain in her back and the nurses and physiotherapist on the ward in the Cancer Centre expressed surprise when I informed them of her spinal fracture.

Leah’s breathing deteriorated on Saturday afternoon and she was transferred to ICU and became critically ill. The next day (Sunday) our haematologist informed me that the CT scan that Leah had done on the Friday showed that it wasn’t just a “small infracture” of the spine that Leah had but a “wedge compression fracture” between T6 & T8. This explained the degree of pain that she had been experiencing. I was devastated when he told me this, thinking about my beloved daughter and her broken body, thinking about how she had smiled and kept going through so much pain.

Leah’s pain was always well controlled in ICU.

Leah’s spontaneous spinal fracture is the one symptom that no one has never been able to adequately explain. She was a fit and healthy girl – other than her diagnosis – before her treatment started in July ’13. She was only on steroids for three months. Leah was already off steroids by the time she had the first X-ray that diagnosed the fracture initially in early December.

One of our consultants told me that if Leah had lived, she would likely have gone on to develop problems with her hips and knees as well. He said that she would possibly have faced a lifetime of hip and knee replacements.

So……….Christmas.

I’m terrified of when some “unknowing” person uses that Northern Irish phrase and says to me “Any word of Christmas with you?” I will just feel like bursting into tears, but if I’m at work I shall have to smile sweetly and respond appropriately.

Yet, I have to remember that the God who has got me this far isn’t about to abandon me now.

I have to remember that the many precious promises in God’s word are for the hard times, not just the easy times. Verses like:

2 Peter 1:3
His divine power has given us EVERYTHING we need for a godly life through our knowledge of Him who called us by His own glory and goodness.

Psalm 23:1
The Lord is my Shepherd I shall NOT want

Philippians 4:19 (KJV)
But my God shall supply ALL your need according to His riches in glory by Christ Jesus.

Sometimes we have to just hold on by the tips of our fingernails.

This is a song that a good friend introduced me to recently – listening to it brings me a lot of comfort.

MY TROUBLED SOUL, why so weighed down?
You were not made to bear this heavy load
Cast all your burdens, upon the Lord
Jesus cares, He cares for you

Jesus cares, He cares for you
And all your worrying
Won’t help you make it through
Cast all your burdens upon the Lord
And trust again in the promise of His Love

Chorus
I will Praise the mighty name of Jesus
Praise the Lord, the lifter of my head
Praise the Rock of my Salvation
All my days are in His faithful hands