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.

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.

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.

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.

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.

The Transfer Test

Very thankful today to receive a letter from the Education Authority (Údarás Oideachais) confirming Miriam’s place in Limavady High School for September, as I know that they are bordering on being over-subscribed for this intake.

Rachel and Leah both got an A in their 11+ and chose to go to Limavady High School, a decision that neither they, nor us, have ever regretted.

Simon and Miriam chose not to sit the Transfer Test.

I remember Rachel, shortly after she received the results of her Transfer Test, cycling around outside the house, with a hen on the handlebars of her bicycle – she just loves the great outdoors. She was very pleased that she had passed.

Her tune soon changed on the Monday, when she went into school and everyone kept saying “Oh, you’ll be going to grammar school.” She came home crying, because she didn’t want to go to grammar school.

Rachel asked me if she could swop her A grade with some other boy or girl who was distressed because they hadn’t got the grade that they wanted.

Nowadays, anytime that Rachel is home from her degree course at Queen’s University, she pops into Limavady High School, to say hello to the staff. This speaks volumes in my book.

When Leah got her A in the 11+, she was acutely aware that many of her friends had also got an A and would be transferring to grammar school.

Leah got a piece of paper and divided it down the middle. On one side she wrote the advantages of going to Limavady Grammar School, and on the other side she wrote the advantages of going to Limavady High School. Then she told me that she was going to her bedroom to pray.

A while later Leah reappeared and said “Mummy, I think that God wants me to go to the High School.”

Leah waiting for the bus outside our house on her first day at Limavady High School

In my view, a happy child is a learning child.

We have always felt that Limavady High School values our children for who they are as people, not just for what they can achieve academically.

When problems arose, as they inevitably do, during the turbulent teenage years, these were handled with care and compassion.

Leah’s education was so important to her. The staff at Limavady High School understood this and supported her in her endeavours to continue with her studies even when she couldn’t attend school because of her low immunity.

The staff maintained contact with us and supplied school work, at Leah’s request, during our prolonged stay in Bristol.

On returning from Bristol, Leah was devastated to discover that the Western Education and Library Board would only provide 4.5hrs of Home Tuition to support her in studying for her GCSEs. As an A grade student this was a bitter blow to her.

On hearing about this, the school came up with an arrangement, whereby I brought Leah into school one afternoon a week and she met privately with some of her teachers for extra support. Leah’s Hospital Consultant agreed to this, providing Leah wasn’t in the corridor when the pupils were changing classes, as her immune system was very weak.

The pastoral care that our children have received both in Ballykelly Primary School and in Limavady High School, throughout Leah’s illness and since her death, has been exceptional.

We have been so blessed as a family by the sensitivity shown to us, by the staff and pupils, from both schools.

This time last year we were approached by Leah’s Form Tutor and Head of Year, to say that staff and pupils had agreed that they would like to have a permanent memorial to Leah by creating the “Lighthouse Award” to be awarded on Prize Day. We were really pleased about this.

It is called ‘The Lighthouse Award‘ after a song by Leah’s favourite band Rend Collective. 

“My Lighthouse”

In my wrestling and in my doubts
In my failures You won’t walk out
Your great love will lead me through
You are the peace in my troubled sea
You are the peace in my troubled sea

In the silence, You won’t let go
In my questions, Your truth will hold
Your great love will lead me through
You are the peace in my troubled sea
You are the peace in my troubled sea

My Lighthouse, my lighthouse
Shining in the darkness, I will follow You
My Lighthouse, my Lighthouse
I will trust the promise,
You will carry me safe to shore (Oh-oh-oh-oh-oh)
Safe to shore (Oh-oh-oh-oh-oh)
Safe to shore (Oh-oh-oh-oh-oh)
Safe to shore

I won’t fear what tomorrow brings
With each morning I’ll rise and sing
My God’s love will lead me through
You are the peace in my troubled sea
You are the peace in my troubled sea

Fire before us, You’re the brightest
You will lead us through the storms

All together at last

When Leah was diagnosed we were told that post transplant she couldn’t be discharged back to our existing house as we had a severe problem with mould and damp in the bedrooms.

Hundreds of pounds & a government grant had been spent trying to eliminate this problem but it kept coming back.

Fortunately we had a half finished house in the garden with an indefinite completion date.

The furniture from Leah’s existing bedroom was crumbling due to the damp, so our friends and neighbours organised a fundraising drive to raise money to equip Leah’s bedroom in the new house with everything she could possibly need.

There was an awful lot of work needing done to the new house before anyone could live in it.

While Leah and I were in Bristol, my husband Horace along with many relatives and friends worked long hours to get the new house into shape.

Meantime Leah sat on her bed in the Bone Marrow Transplant unit and ordered all her new bedroom furniture & bedding from Dunelm Mill online – she was so excited.

When we had got back to Belfast, Rachel, our eldest, toured Leah around Ikea in a wheelchair on a quiet Monday morning to get the finishing touches.

Leah needed a desk at which to study for her GCSEs and a comfortable desk chair.

When the time for our homecoming was near friends and family were busy cleaning, making beds (literally) and hanging curtains.

Finally on Monday 11th November ’13, Leah and I moved into our new house.

Leah absolutely loved her new room with its own ensuite facilities.

Everything was designed to protect Leah’s frail immune system and to help her convalesce

.

At this stage a lot of the house was as yet unfinished so only Leah & I could live there initially – the rest of the family lived nearby in the old house.

Our goal was to be together for Christmas.

There were days when Horace & I wondered how that goal was ever going to be achieved.

Again we relied on the generous help of family and friends.

Finally on Christmas Eve, the other bedrooms were ready and we moved the furniture in.

That night, for the first time since the 26th June ’13 the six of us were sleeping under the one roof.

My back was sore from lifting & carrying but I felt such an immense sense of relief that we were all together at last.

 

 

Some days are just harder than others

Today was my younger daughter’s appointment at the fracture clinic in Altnagelvin Hospital.

I explained to her before we left the house that Mummy feels sad when she goes near the hospital because it brings back so many memories & not to be worried if I started crying.

The easiest place to park is opposite the South Wing where the Sperrin Oncology/Haematology Ward is, where Leah had two admissions & sat two of her GCSE modules – & got an ‘A’ in both.

I managed to park, walk up the steps & enter the hospital without shedding a tear.

I was just starting to relax when it hit me – today is the 20th of February……..how come I never thought of this before?

Wednesday 20th February 2013 started like any normal working day – I got up, got dressed and went to work.

I never suspected as I got dressed that morning that the clothes that I was putting on me would be what I would sleep in that night – and the next night too.

In fact it was Friday lunch hour before I managed to shower and change.

Leah had been having hematological investigations since the day of her 15th birthday – New Year’s Eve 31st December ’12.

By Wednesday 20th February ’13 Leah was as yet undiagnosed.

A few friends had been asking me for weeks to meet them for a meal and I had kept putting them off.

I was worried about Leah and I didn’t want to leave the house unnecessarily in case she took unwell when I wasn’t there.

Wednesday 20th February was the day that I had finally agreed to meet up with them for a meal after work.

We went to a really nice Chinese restaurant called the Mandarin Palace.

We chatted and laughed and caught up on each other’s news – it felt good to have a bit of rest and relaxation.

I had just swallowed the last bite of dessert when my mobile phone rang – it was my husband “I think you had better come home, Leah’s not feeling well.”

Leah was severely neutropenic and her consultant had me well warned that if she ever became unwell that I wasn’t to waste time taking her to the GP or A&E, I was to immediately phone the Oncology/Hematology helpline.

We paid the bill, hugged, wished each other well and said goodbye.

I went home and assessed Leah’s situation, spoke to the staff on the Sperrin Ward and was asked to bring her in.

Although it was midterm, Leah filled her overnight bag with school work – she wanted to make the best possible use of any time spent in hospital.

I was as yet totally unaccustomed to this new way of life and I didn’t pack even as much as a toothbrush for myself.

The nurse who was cutting off my younger daughter’s plaster today didn’t notice my distress at first.

Then he tried to give me directions to X-ray but I got totally confused.

You would think that I should know my way round my local hospital by now, especially when you consider how much time I’ve spent in it.

Its hard though when your eyes are filled with tears & your mind is full of memories.

The nurse was very caring & he took me into a side room and talked to me until I had regained enough composure to continue.

My young daughter got her X-ray quite quickly & we returned to Clinic 3.

A pleasant young doctor told her the good news that her arm was well healed and no further treatment was required – what a relief.

A close friend who works in the hospital then met us for a drink & buns in the outpatients cafe.

After this I dropped my young daughter off for a day of fun and games with some of her school-friends – they are off school for mid-term.

This has been very kindly organized by two of the parents and they have the use of a church hall for the day.

As I pulled up outside Ballykelly Church of Ireland hall I remembered that the last time I was there was to take Leah to “BK Banter” – something she absolutely loved attending – so many memories.

It’s good to have memories – lots of them – some days are just harder than others.