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.
I absolutely love the beautiful, grace filled, writings of Kara Tippetts, who recently died from cancer.
In this, one of her older blog posts, she writes –
“As I reached the parking lot, the dear woman and her husband, who asked me my hard times of day, jumped out of their car. Her husband wrapped me in a big hug and said, I’m 6:30 every day, and she called to me, I’m 10 every night. I was undone. I cry now thinking of this couple doing battle with me in my weakest moments. I would like to say those times of day are getting easier. They are not, but I know I’m not alone in them.”
As I read this, I think of the many who prayed for us (and continue to pray for us), when we were barely able to pray for ourselves.
So many days and nights spent in hospital with Leah, being told things no parent ever wants to hear, feeling so alone, yet always knowing I wasn’t alone.
In the quietness of our hospital room, a text or a Facebook message would come in, with a word of encouragement, or an assurance that somebody, somewhere, was praying for us.
How could we ever have got this far, without the many who have supported us emotionally, spiritually and practically?
One of my many favourite Bible verses has long been
1 Samuel 23:16 (NIV)
“And Saul’s son Jonathan went to David at Horesh and helped him find strength in God.”
It’s not always about preaching and teaching, sometimes it’s about a hug, a squeeze of the hand, a thoughtful but inexpensive gift, or just being there for somebody, letting them know that someone really does care.
Before I joined the ranks of the bereaved parents, I think I naively imagined that when a parent lost a child, they would somehow fairly quickly turn all of their attention to their surviving children.
What I didn’t understand is that when your child dies, you become so consumed with yearning and longing for the child that you have lost, that it’s almost like you now love them even more than when they were alive.
You become desperate to hang on to your relationship with your now dead child, desperate to somehow or other preserve their memory.
I’m part of a private facebook group of parents bereaved by cancer. Some time back we were discussing our feelings on clearing out things belonging to our child after they had died. As one would expect, opinion was divided between those who (like me) had cleared out and given away some of their belongings and others who felt the need to keep everything exactly as it was when their child had passed away.
Then I mentioned the fact that I have kept all of Leah’s medication and dressings. Several parents responded to this by saying that they had to get rid of their child’s medication soon after their child passed away, or they would have used it to take their own life.
These parents have other children, but their emotional pain and overwhelming desire to be with their dead child was so great that suicide had become a realistic option.
Thankfully I haven’t felt suicidal since Leah died, but I do understand to some extent how these parents feel. It is so difficult to go on living after the death of one’s child.
One of the things that’s been very difficult since Leah died, has been for Miriam (our youngest child) and I to do things on our own together. When Leah was alive, it was never just Miriam and me. I almost always had a minimum of two kids in tow.
When Leah died, Miriam became like an only child. She hasn’t wanted to do things on her own with her parents and she has spent an awful lot of time alone in her room.
None of us ever wants to see our children suffer. Seeing the pain of grief and loss in the eyes of my “baby”, knowing that this is a pain I cannot fix, has at times felt excruciatingly painful.
The main reason why Miriam and I couldn’t go places on our own together, is that to do so would have been to constantly remind ourselves of Leah’s absence and that just felt too painful.
I was used doing things on my own with my eldest daughter, so that hasn’t been an issue. In 2012 she and I went on holidays together – she took me to London/Cambridge for 10 days as a special birthday treat.
Rachel is away at University now and has a part-time job as well. We love when she gets home for the weekend. My son is like someone who is surgically attached to his computer – he suffers separation anxiety if he has to leave it for any length of time.
Thankfully, during 2014, there were several occasions when friends accompanied Miriam and I to places like Portrush and Portstewart, so that we still got to do fun things together, just not on our own.
There were times when I asked her to go places on her own with me but she refused – she wasn’t ready.
Then, last week something happened, Miriam asked me if I would take her over town yesterday. We planned a girlie day together. I let her set the agenda.
On the way to town in the car Miriam said that she wanted to weed Leah’s grave and I replied that we had no gardening tools with us. She suggested that we got some in the Pound Shop.
In the gardening section of B&M Bargains Miriam found a planter in the shape of a shoe: “Oh Mummy, can we get this for the grave? Leah loved her pink converse!”
Miriam also chose some pretty windmills to add colour to the grave.
Then it was time for some clothes shopping – for Miriam.
When the shopping was all done we headed over to Ballyoan Cemetary. Miriam started weeding the grave. I was dispatched with an empty milkshake bottle to get water for the plants, from the tap which is half way across the Cemetery.
I stopped to chat to people along the way, so Miriam had most of the work done by the time I got back. We assembled the windmills and she decided where to place them.
No shopping trip is complete without the obligatory McDonald’s:
Our last stopoff was was to visit Miriam’s wee cousin.
So, exactly fourteen months from the day when Leah went to be with her Heavenly Father, Miriam and I enjoyed our first proper mother daughter day out together and it felt good.
This was Leah with her Dad on her 16th birthday on the 31st December 2013.
There was no party, no cake, we didn’t even sing “Happy Birthday”.
Leah was exhausted from the effort of trying to breathe. She struggled to even keep her eyes open.
I kissed her and told her how precious she was and how much we all loved her. I said that we’d have a big party when she got home.
This is what I wrote on our Facebook blog @ 8am that morning:
“Leah’s oxygen levels & breathing remained stable over night. They are alternating 1hr of the face mask CPAP with 3hrs using the nasal prongs. Leah prefers the nasal prongs. We both got a few hours sleep. Thanks for all your prayers & supportive messages. Visiting is of course restricted in ICU & many of you live far away but modern technology brings your loving support directly into Leah’s room.”
Lots of people sent birthday wishes by text, facebook, card or email. All of these were read out to Leah.
On Thursday 2nd January ’14 Leah went on a ventilator. By Friday this had helped her body so much that she was awake and keen to communicate.
Photography was strictly forbidden in ICU but like many young (and not so young) people, Leah loved taking selfies.
On the morning of the 3rd January, when Leah was using her iPad, she pulled my head down beside hers and ‘click’ – there it was, we’d broken one of the rules of ICU.
It was usually quite difficult for Leah to type, as the medication that she was on blurred her vision.
Not on this occasion – Leah uploaded the photo to Facebook and typed out: Didn’t exactly plan my sweet 16 birthday or the New Year to be like this but thanks to everyone whose been praying. I love you mummy ❤ 🙂
We are part of a large close extended family and at Christmas we have some big family get togethers. This photo shows just my husband’s side of the family, but it has three more members since then – via marriage and birth.
We decided several years ago that it was far more important to spend time together than to lavish money on expensive gifts.
My children always liked to have some little gift to give to aunties, uncles, cousins, grannies and granda’s. At one stage Leah used to hand make a book mark for each person. Then, about four years ago, we started making magnetic calendars on Vistaprint. Leah used to design these. We printed two or three dozen each December. I’ve no idea how we missed the “typo” in the 2011 one, where the second Scripture reference should be 1 Peter 5:7!
When I look back at the wording Leah chose for the 2013 calendar I am amazed – prophetic words indeed. This calendar would have been made around three weeks before Leah’s first trip to the GP and the blood test that changed everything.
The calendars seemed very expensive to print that year. In all the busyness and expense of Christmas I became very irritated and I crossly told Leah “This will be the last year that you’re making those calendars – they’ve got far too dear.” Sadly those words came to pass in a way that I could never have imagined.
My Facebook “Timehop” app tells me that this day three years ago I posted a link to a song called “One Last Christmas”
I have no recollection of seeing this video before or of posting this song 12 months before Leah became ill and 24 months before her final admission to hospital.
I’m really struggling emotionally this month, but I’m also thankful that Leah actually made it home from Bristol, that she had six weeks with us in her beautiful purpose built bedroom, that she got to spend time with some of her family and friends and that we did indeed have “one last Christmas”!
“It’s the news that no one hopes for Every parent’s greatest fear Finding out the child you love so much Might not make it through the year
Now the thought of spending Christmas Without him just feels wrong They’ve been praying for a miracle Now they’re praying he can just hold on
For one last Christmas, one last time One last season when all the world is right One more telling of the story One more verse of silent night They’d give anything so he could have One last Christmas”
Before Leah became ill I had never driven the 140 mile round trip to Belfast. Leah’s illness obliged me to acquire that skill, but I only know one route – the one from our house to either Belfast City Hospital or the Royal.
I wanted to spend a day in Belfast with our eldest daughter before Christmas. Conveniently for me, she lives quite near Belfast City Hospital.
Yesterday was Friday, the day that Leah and I always spent at the City Hospital from we returned from Bristol until she died. I left the house at the time that Leah and I always left and drove the same roads, only this time I was alone.
Unusually for me, I kept the music off in the car for the entire 70 mile journey – I needed to be alone with my thoughts and memories.
I drove on to the motorway and remembered how on Friday 27th December 2013 Leah suddenly became violently ill at that stage. Once the vomiting had stopped Leah insisted that she wasn’t sick, that she had merely drank some water too fast. She desperately wanted to be able to attend a large family get together in Donegal that evening.
On the outskirts of Belfast I passed the sign for Belfast Zoo and remembered how Leah longed to visit either Bristol Zoo or Belfast Zoo during her illness. Finally on Friday 13th December our Belfast haematologist told Leah that her immunity was now strong enough for a zoo visit. However, by this time Leah had developed a spontaneous spinal fracture and she would have needed to go in a wheelchair. She was in a lot of pain and could only walk short distances. Leah became ill and died before there was time to organise this.
As I drove into the many lanes of Belfast traffic I remembered how Leah used to look at the map that my husband had drawn and how her gentle calming voice ensured that I was always in the right lane.
Yesterday I prayed and asked God to help me.
I passed the turn off to the City Hospital at the same time as Leah and I would have taken that turnoff this time last year.
You might wonder why I do these things, why I expose myself to this pain instead of running away from it? It’s just my way of processing it all, because sometimes I still can’t even believe that all of this has happened. Sometimes I feel as if a part of me is still in shock. The trauma feels too great for my mind to comprehend.
In December 2012, three weeks before her first blood test – the one that changed everything – Leah posted these amazing song words on her Facebook page:
Rachel and I spent a lovely day together in Belfast. The last time I shopped in Belfast at Christmas time was in the 1980’s. Rachel got various bits and pieces. I spent all of £1.99 on a pretty candle holder – I love scented candles.
We had our lunch in Cosmos – I hadn’t been there before but Rachel described it to me as being similar to ZaZa Bazaar, a restaurant in Bristol that I particularly liked. I really enjoyed the main course in Cosmos, but for desserts the rice pudding and whipped ice cream in ZaZa Bazaar wins hands down.
Rachel came back to Derry with me and she drove thankfully – I was feeling quite exhausted at this stage. Once home we did a bit more shopping from the comfort of the couch in front of a nice warm fire.
In the mid eighties I worked as a nurse in England. Part of that time was spent doing agency work and I worked in several different hospitals.
Everywhere I worked I met Irish nurses, so I could be forgiven for assuming that all English hospitals have a fair complement of Irish nurses.
What a disappointment when Leah and I got to Bristol Children’s Hospital and discovered NO Irish nurses. I asked a nurse on the Transplant Unit where all the Irish nurses were and he told me that he had worked in the hospital for 15 years and had met only one Irish nurse in all that time. I was gutted.
Leah and I were so far from home and family. I longed to hear a familiar accent and meet someone who understood our culture. Then I discovered that there was another child from N. Ireland on the unit – Caiden Tang. His mum Kathy and I instantly became friends – partners in crime more like!
Kathy and I were each in lockdown in isolation cubicles with our very sick children so we relied on snatched moments at the linen cupboard or in the changing rooms to have a quick conversation – and even a giggle. We both knew that a sense of humour was essential in helping us retain our sanity.
Caiden was five years old and was very unwell after his transplant. He was so weak that he had to learn to walk again. When I was entering or leaving the BMT Unit I used to wave into Caiden. His bed was full of teddy bears, his cubicle walls adorned with his absolutely favourite band – One Direction.
Caiden was first diagnosed at the age of five months so Kathy had been on this road way longer than me. Kathy’s tenacity, courage and dogged determination to make sure that her child always got the best possible medical and nursing care inspired me greatly. Her sense of humour through it all was like a tonic.
Occasionally, if Leah’s boyfriend Nic was visiting her and Caiden’s dad Raymond was with him, Kathy and I got an entire evening together – now that was a treat! We spoke the same language – Norn Irish English and we had a similar sense of humour – a little bit crazy!
Children weren’t allowed in to visit on the Transplant Unit but Caiden had been stuck in a tiny isolation room for months and was desperately missing his older sister Ellie. Ellie was also desperate to see Caiden.
Kathy understood the importance of Caiden’s emotional wellbeing and the impact this could have on his recovery. So one quiet Sunday in August, Ellie was surreptitiously smuggled into Caiden’s room and the joy on their faces was very evident in the photographs.
Kathy and Caiden left Bristol the week before us. They had to fly back to Belfast by air ambulance as Caiden was still very unwell.
Back home Kathy and I kept in regular contact but were unable to meet up at that stage due to caring for our children and the fact that we don’t live near each other.
When Leah was critically ill in ICU in Belfast City Hospital Kathy sent me heartfelt text messages of support – the kind that only another “oncology mum” can write.
Kathy also posted a beautifully worded prayer request for Leah on Caiden’s Facebook page. This post received over 1,000 ‘likes’ and it encouraged my heart so much to know that so many people were praying for us and wishing us well.
I was so pleased in May 2014 when Caiden started to look so much better and was even managing to attend school. His progress was amazing.
Then in September came the news that I didn’t want to hear – Caiden had developed pneumonitis. This was the post transplant lung complication that had taken my daughter’s life. I definitely didn’t want Kathy to experience the pain of grief and loss that I live with on a daily basis.
Caiden had been diagnosed with lymphoma at 5 months old. He had come through so much. He was such a wee fighter and constantly amazed the doctors with his ability to recover against the odds – surely this couldn’t be the end?
Just because pneumonitis took Leah’s life didn’t mean it had to take Caiden’s too – every child’s medical situation is different. I prayed for Caiden to be healed, as did so many others. As the scene in ICU in the Royal unfolded, I cried many tears for Kathy and her family.
Along with Kathy I clung to each tiny bit of hope, while at the same time realising with great sadness that her journey bore so many similarities to the 2.5 weeks that I had spent in ICU with my own daughter. I prayed for healing for Caiden, for strength and wisdom for Kathy and the family circle.
Then this morning, on my youngest daughter’s 11th birthday, came the news that shattered my already broken heart.