A Sibling’s Grief

A few days ago my youngest child brought home the annual Limavady High School magazine. I took it to bed with me that night to start reading through it. One of the first places I looked was in the creative writing section. Initially, I read an endearing piece written by one of my daughter’s classmates about becoming a ‘big sister’. Then I discovered that my daughter had also written a piece entitled “My Most Memorable Experience”.

As I began to read it I discovered that she had written about her experience of losing her sister. Although I didn’t read anything that I hadn’t already known, it was still very emotional to see her experience of the death of her sister written down in black and white. However, I also felt very proud of her for being able to give her grief a voice and to do so very articulately. She wrote it in the previous school year so she would have been thirteen or at most fourteen when she wrote it.

I have obtained her consent to publish her piece of writing on here, with the aim of increasing awareness of sibling grief. Several adults who lost a sibling when they were growing up, have told me that they felt that the focus was usually on their parents’ grief and that they often felt as if their enormous loss was overlooked.

My Most Memorable Experience

“If you have lost someone very important to you, then you already know how it feels. And if you haven’t, you cannot possibly imagine it” – A Series of Unfortunate Events

On the 19th April 2013, my sister was diagnosed with a rare and life-threatening form of bone marrow failure known as Myelodysplasia. Cancer. She needed a bone marrow transplant urgently. We all had to get our blood tested and thankfully my brother was a match. Leah and my mum had to spend 14 weeks in Bristol Children’s Hospital. That meant for three months I was alone with my dad and brother. My older sister was away at university. I pretty much had no one. My dad just about learnt how to tie my hair up and my brother was always on his computer so I was pretty much alone.

Thankfully after the three months of them being in Bristol and me and my dad occasionally visiting when we could, the transplant was successful in curing her Myelodysplasia. I was ecstatic. I was so happy, finally, life would be normal again. We could move into our new house. It would soon be Christmas and we would become a full family again.

Christmas had passed and everything seemed normal. But it wasn’t……On the 28th December, she became unexpectedly unwell and was then admitted to ICU in Belfast City Hospital. She had only just come home and now she’d been taken away from me again.

Me, my dad and my brother had to drive up to Belfast in the middle of the night Wednesday 15th January 2014. When we got there it was eerily silent. I remember my mum taking us up to Leah’s room. I remember her lying there looking lifeless. She couldn’t move, she couldn’t speak, she couldn’t even open her eyes. She was just lying there. I remember crying for hours. Crying until my head was sore. Crying for hours. But I don’t remember it stopping. The last things I remember from that night were kissing her hair-free head and then sleeping on my aunt’s floor, dreading the morning.

The next day was by far the worst of my life. All my family were gathered in the NI Children’s Hospice. It was silent again. No one was ready. No one was prepared to lose her. They had to use two ambulances to transport her from the hospital to the hospice. They moved her into a room there, all of us were gathered around her whilst her favourite playlist of songs serenaded us in the background. I remember clutching onto her hand, while I sat on my aunt’s knee, mentally begging her to hold on. I finally lost that hope and broke down. The tears were streaming down my face. My aunt had to take me to another room because I was having a panic attack. My head was sore. My chest was tight. I couldn’t breathe.

I remember the hospice staff switching off the life support.

I remember hearing the continuous beeping stop.

I remember the moment she died.

The atmosphere was quiet, so quiet that you could nearly hear all of our hearts shattering at once. I would try and describe the feeling to you but I can’t put in words how horrendous it actually was. I would never wish that feeling upon anyone.

The wake was the next few days. They laid her white coffin open on her bed. She was wearing the dress that she had worn to her formal (which was only a few weeks before she relapsed) and some rainbow, fluffy socks that I picked out. We all put something into her coffin, one of the items being her favourite teddy, Ducky. I’d say there were over a hundred people who visited the house in total. The funeral was on Sunday but the only thing I recall is my uncles and cousins carrying her coffin.

The reality is you will grieve forever. You won’t get over the loss of someone you love. You will learn to live with it. You will heal and rebuild yourself. You will be whole again. But you will never be the same again, nor should you want to be. I know I’ve changed. I know I’ll never be the same again but I can’t tell if it’s for the better or for the worse.

Yes, I am angry. Angry because she was so young. I was so young. Sixteen-year-olds aren’t supposed to die. Ten-year-olds shouldn’t have to feel that pain. But I’ve also become stronger……..Sometimes I look up at the night sky and there’s always one star that catches my eye. It always seems the brightest. And I know she’s there, watching over me.

Sometimes there is no other way

Sometimes I don’t blog because I’m generally busy getting on with life and I either don’t have much to say or I don’t have the time to say it! Other times I don’t blog because I’m feeling very sad and I’m tired of writing sad posts. Then I think; what the heck – this is my blog and I’ll cry if I want to – people can choose not to read it if they don’t like it.

This past summer was mostly good. The day of the A and AS level exam results in August was both happy and sad. Our son did fantastically well but I was also acutely aware that Leah wasn’t here to get any exam results. I went to the school with our son to get his AS results and I congratulated Leah’s friends on their excellent A level results. I was very grateful to the one parent at the school who acknowledged my grief and loss with a hug, in the midst of receiving her son’s amazing A level results.

While our son posed for a photo for the local papers with others who had received excellent results, I sat in the car in a quiet corner of the school car park sobbing. By the time he texted looking for me to come and collect him, I had regained my composure. Results day needed to be about his success, not about my sadness.

This past week Prize Day took place in both the school that Leah attended and the school that Simon now attends. We attended Simon’s prize giving event as proud parents. However I hadn’t really thought about the possibility that some of Leah’s peers would also be there receiving their prizes before departing for university. One of these was the very girl who started Nursery School alongside Leah many years ago – they walked through the door of the Nursery class together that first morning. So much has changed since then. This triggered more difficult emotions for me, which I sought to contain.

We didn’t have occasion to attend Prize Giving at the High School this year, but a kind friend gave me her copy of the programme. In the Prize Day programmes for both schools there is a section that lists which universities this year’s A level students have moved on to. I scrutinised this section in both programmes, but naturally Leah’s name isn’t mentioned. This time three years ago while in hospital in Bristol, Leah talked to me of her future career plans, but that clearly was not meant to be. Leah’s name is mentioned in another part of the programme though, where she continues to make us proud. I was so pleased to read the names of this years’ recipients of the award created in her memory:

I try hard to live in the present, to count my blessings, to be grateful for what I have, to focus my thoughts on the good things in my life and the people that I love, but despite it all, grief and loss at times becomes overwhelming. Sometimes no matter how hard I pray and look to God for the strength to go on, no matter how much I read my Bible or how many Bible teaching podcasts I listen to, the sadness just doesn’t go away and those tears have to be shed – there is no other way.

LHS COLOUR RUN 2016

I went to get my hair done today and my hairdresser had a copy of the local newspaper ready to hand to me. It contained a full page spread of Years 13 and 14 pupils from Limavady High School participating in a Colour Run in Leah’s memory. I was aware that the Fun Run had taken place but I wasn’t aware that the photos were in the paper. The thoughtfulness of my hairdresser meant a lot – little things mean so much nowadays.

When Leah was alive, the children and I always went together to get our hair done, it wasn’t something I normally did alone. We used to go to a close relative in Donegal who has a salon in her house and we made it into a day out, stopping to shop (and get special treats) along the way. I ended up changing to a local hairdressers after Leah died, because I found it way too emotional to drive all the way to Donegal. However, the first time that I went to this hairdresser, who I had never met before, I dissolved into tears. She wasn’t fazed by my open display of emotion though and she supported me through it, in a kind and understanding way.

Four pupils organised the Colour Run and it took place at the start of their study leave. Leah would have been due to sit her A level exams and leave school this year, so this means that when her friends and classmates were taking part in activities to celebrate the end of their formal education, they found a way to include our daughter. This means so much to me, more than words can ever explain.

The pupils used the Colour Run as an opportunity to raise funds for the N.I. Children’s Hospice, the place where Leah died in peace and dignity, surrounded by love. They raised £1,000. This will bring the total donated in Leah’s memory to the N.I. Children’s Hospice to approximately £8,000. Other than the initial £2,000 donated ‘in lieu of flowers’, most of this money has been raised by staff and present/former pupils of Limavady High School  and Limavady Grammar School.

Northern Ireland Children’s Hospice is the only service of its type within Northern Ireland, caring for children and young people with very complex needs. There are over 1,300 life-limited children and young people and their families living in Northern Ireland, who need the specialist care that only the Children’s Hospice can provide. The Children’s Hospice aims to meet the emotional, social and spiritual needs as well as the physical ones, enabling children and young people to make the most of their lives within the limitations of their illness.

Leah would so approve of all of this fundraising for the Children’s Hospice. Leah absolutely loved children. When Leah was of Primary School age, I worked in a setting that provided respite day care for children with life limiting conditions, some of whom also received care from the Children’s Hospice. Leah used to ask me the first names of the little ones who were really unwell, so that she could pray for them. I remember Leah telling me that she prayed every night for Erin, Beth and Ella, amongst others.

Sometimes at work we had ‘family days’ and my children came to these too. I can picture Leah, aged around eight years old, sitting on the couch beside Erin and her mummy. Erin’s little fist was tightly clasped around Leah’s index finger. Leah sat there smiling, very content to at last have met one of these little ones for whom she prayed so faithfully.

Sadly, Erin died on the 16th April 2012, aged 7 years. In May 2014 when our family went to the Garden of Remembrance at the Children’s Hospice to place Leah’s memorial stone, we were accompanied by Erin’s parents. We placed Leah’s stone near Erin and her brother Martin’s memorial stones. I thought about them now in heaven, no longer bound by the confines of illness and disability.

Thank you to all of the staff and pupils of Limavady High School who worked together to make this Colour Run happen. Thank you for remembering our daughter in this way and for raising this money for the Children’s Hospice. Leah would be so proud of you all.

Parenting Teenagers

I know why our stay at Daisy Lodge was referred to as a ‘Therapeutic Break’ rather than just a holiday. The staff there go to such lengths to ensure that each family have a relaxing time. All our needs were catered for. The result was that all of our family were very relaxed and interacted happily with each other, in a way that sadly, doesn’t often happen at home.

Our three children even posed happily for a photograph before we left. The last time that I recall Simon and his sisters willingly getting their photograph taken together was in 2011!

Unfortunately, the Daisy Lodge ‘spell’ wore off soon after we returned home: our youngest two have retreated to their caves (bedrooms).They only emerge when their need for food supercedes their fixation with their electronic devices.

Communication is once again monosyllabic most of the time.

The exception to this being our eldest daughter. At 21 she has emerged from adolescence and she dazzles me with her wit and wisdom, along with her many other qualities.

She lives away from home, is financially independent and works part time to support herself while studying for a university degree.

During one of Rachel’s recent visits home, my youngest daughter was being especially perverse and was pushing all my buttons. I was getting more and more frustrated. When my youngest had left the room, my eldest daughter turned to me and said “Don’t worry Mum, I used to be just like her and look how well I turned out.”

I replied “Rachel, I can assure you that very thought is the only thing that keeps me from signing myself into a home for the mentally bewildered.”

This week I was scheduled to take my youngest daughter school uniform shopping. She will be starting at Limavady High School on the 1st September, the same excellent school that her three older siblings attended.

I certainly wasn’t looking forward to this task. Last year it was just awful, I cried the whole time. This past weekend while sorting through bags of old school uniforms to take them to the Charity Shop I cried my eyes out while removing Leah’s name from her old uniforms.

Happily for us, Rachel my eldest, offered to help us with the school uniform shopping. She gave up her two days off work to drive the 140 mile round trip home for this purpose.

Rachel read through the uniform list issued by the school, drew up a shopping list and off we headed to Coleraine to the shop where we always buy our school uniforms.

Not a tear was shed, only chitter and chatter and even some laughter.

So for any parents reading this who are in the trenches with uncooperative teenagers and feeling battle weary, I say to you:

Keep loving your teenager.

Keep hugging them.

Keep the lines of communication open.

Make sure they know that no matter what, you will always be there for them.

Let them know that home is where they will always be loved and will always belong.

Then some day, like me, you will discover that your uncooperative teenager has emerged from the “stormin’ hormones” and it’s all been worth it!

I recently discovered Brené Brown’s Parenting Manifesto, excerpted from her book Daring Greatly: How the Courage to Be Vulnerable Transforms the Way We Live, Love, Parent, and Lead.

I think that Brené has so much compassion and wisdom.

A Smile For Everyone

I was tidying up this evening and putting away Miriam’s end of year school report. This entailed bringing out the folder in which I have stored all of the children’s school reports since they started school.

I knew it would be painful, but I couldn’t stop myself. I started reading through Leah’s school reports in reverse chronological order.

Leah’s Limavady High School reports spoke of an A grade student, quiet, hardworking and enthusiastic. I felt very sad, thinking of what might have been.

However, it wasn’t until I started reading her Primary School reports, that my emotional dam broke completely.

Leah’s P7 report, spoke of an avid reader, a fluent writer and a delightful child who was caring and mature. When I had read her P6 report, I had to stop reading, I could no longer see the pages. Leah’s P6 teacher talked about Leah’s happiness coming through in her singing and of how Leah had a smile for everyone she met.

It left me wishing that it was still 2008 and that Leah was back in the Ballykelly School Choir, singing her wee heart out.

The t-shirt that Leah wore when performing with the Ballykelly School choir in the Odyssey Arena in Belfast. I don’t remember noticing at the time that this was connected with the Clic Sargent Children’s Cancer charity.

Unfortunately we don’t have a roll back option on our lives. No matter how hard or how much we wish for it. We can only go forward.

Many, painful, difficult things happen in life and we have to find a way to go on.

It isn’t easy.

The love of family and friends certainly helps.

Sometimes though, even friends and family can be busy or have other stuff going on.

The Bible tells us that ‘we have a friend who sticks closer than a brother’ Proverbs 18:24 

I believe that friend is the Lord Jesus Christ, who died on the cross for us, so that our sins could be forgiven. He rose again and He lives forever to intercede with the Father for us. Hebrews 7:25

The End Of An Era

Last night was the P7 “Leavers’ Disco” at Ballykelly Primary School. The theme was “Celebrities” and the girls and boys were the celebrities. Every one of them, as they walked up the red carpet, looked so amazing.

Here’s my ‘celebrity’, looking way more than her eleven years.

Today, parents were invited to a farewell event in the school Assembly Hall, followed by a complimentary lunch.

As we gathered, a slide show of the children was displayed on the screen. Pictures of them from Nursery and P1 were displayed on a Notice Board.

Then all of the P7 pupils entertained us by playing three lively pieces on African drums. It was very professional, and all inclusive as every pupil participated.

After this, we went upstairs for a slide show presentation of the P7 trip to Edinburgh, where several of the boys and girls were interviewed about the activities that stood out for them. The pupils who didn’t go to Edinburgh interviewed the ones who did, so again it was all inclusive.

Then we returned to the Assembly Hall for the part that I enjoyed the most. Each child was called forward one by one. We were told their name, what school they are transferring to, what they will miss about Ballykelly Primary School, what they are looking forward to about their new school and what their ambition in life is.

Several want to become famous You Tubers. A few hope to become professional footballers. One boy wants to become a policeman and help in the fight against crime. One girl wants to become famous and take over the world!

Each child was then given a booklet containing a photo of each P7 boy and girl and their answers to these questions, as a keepsake. What a lovely thing to look back on in years to come.

After this, staff, parents and pupils were treated to a delicious lunch. During this time, the P7 pupils were busy engaging in the traditional signing of the polo shirts.

Hunter’s Bakery supplied an amazing cake, which was cut and distributed. It was absolutely delicious.

Then, that was it, we had to say goodbye and walk away.

For me, it was walking away from seventeen years of having children in Primary School. In Ebrington Primary School initially when we lived in the town and then in Ballykelly Primary School since 2002.

All four of our children have enjoyed their primary school years. We have such fond memories of Ballykelly Primary School.

There is of course a little piece of Leah wrapped up in it’s walls too. Saying goodbye to that is hard as well.

Memories of coming to Christmas Concerts and seeing Leah singing her heart out in the school choir.

Memories of seeing written work displayed on the wall along the corridor, when they were asked what they would like to be when they grew up and Leah had written that she wanted to become a missionary.

Memories of Leah’s P7 teacher’s collection of gems for arts and crafts and how excited Leah was when her teacher got a new order of these pretty gems from Baker Ross.

Memories of Leah’s P7 Edinburgh trip and the card she wrote to me saying that she had cried on the Thursday night because she missed me. Some day I will find that card again and there will be more tears.

How blessed our children have been, to have been so cared for and nurtured whilst being educated.

I never wanted what happened this past two years to be my life story, but so many things happen in life that we don’t get to choose. Thankfully God has placed many people in our lives who have supported us and loved us and made this journey more bearable.

The kindness and love shown to Miriam during Leah’s difficult illness and since her death, by the Ballykelly School community, has been enormously helpful. I have never taken it for granted and I will always appreciate it.

The Memory Box bought for Miriam by her classmates after Leah died, will always be a treasured possession and a reminder of the support that she received from them at such a difficult time.

In September Miriam will start at Limavady High School, another school that has completely blown me away by the pastoral care that our older three children have received and with the love that has been shown to our family this past two years by the entire school community.

Thankfully, I know that my daughter’s education is in safe hands.

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

Duke of Edinburgh Award

Rachel called into Limavady High School  one day and brought home Leah’s Bronze Duke of Edinburgh Award badge and certificate. Leah had started working towards her Silver Award but had to give up in February 2013 due to her illness.

I remember Leah being very upset and tearful about not being able to continue working towards her Silver Award. Her older sister had completed hers right up to Gold.

LHS Fundraising for Leah 2013

In the Spring/Summer of 2013, after Leah was diagnosed and before she had her bone marrow transplant, her classmates organised various fundraising activities in the school and presented Leah with a very generous cheque. Simon, as bone marrow donor, also received a financial gift from them.

This and the many other practical expressions of people’s love and support that we received were so very much appreciated and have helped to make our journey a little easier. One of Leah’s school friends put together this video last year but I only came across it recently.

Have you not googled it?

On Saturday 18th May ’13 Leah was admitted to the Sperrin Haematology/Oncology Adult Ward of our local hospital. She had Febrile Neutropenia and was immediately started on intravenous antibiotics – this condition can be fatal if not treated quickly.

By Sunday morning Leah was feeling much better and was sure that she would be able to sit her two GCSE modules the following day Monday 20th May. However when the consultant came round he said that she would not be allowed out of the hospital to sit her exams. When I queried him on this he replied “Mrs Whyte, this is a life threatening situation, have you not googled it?” I didn’t answer him – I didn’t need google to tell me that my child’s life was in danger. He spoke to the nurse and she reappeared a little while later with a computer printout regarding “febrile neutropenia” – otherwise known as “neutropenic sepsis” and how it could very quickly become fatal it not correctly handled.

I asked Leah what she wanted to do about her exams and she said that she wanted to sit them, so I said “that’s fine, it’s going to happen“. Inwardly I prayed for strength and wisdom. It was a Sunday morning and I didn’t have contact details for any of the staff in Limavady High School. I was also confined to the hospital with Leah as she didn’t like being left on her own and I didn’t like leaving her.

It’s a long story and various good people helped along the way, but eventually around 6pm Sunday evening I got speaking to Mr M, Leah’s Head of Year, a man who was a tower of strength and compassion throughout Leah’s illness journey. He promised to ring the exam board first thing Monday morning. I then informed the ward staff what we were hoping to arrange.

Monday morning the wonderful Mr M phoned to say that he had authorisation from the exam board for Leah to sit her two exams in the hospital that day. An invigilator was on his way from Limavady High School to the hospital in Derry/Londonderry with the exam papers – English Literature and Chemistry. I went to the nurses station to update them. They informed me that Leah wouldn’t be allowed to sit these exams without authorisation from her consultant and he was busy in clinic. There was considerable stress until the consultant could be contacted and brought to the ward to give his permission. Thankfully everything got sorted out.

Leah sat her exams in the ward sister’s office. It was the first time that a patient had ever sat GCSE modules on this ward. In August ’13 when Leah was in the Bone Marrow Transplant Unit in Bristol, Mr M phoned us to say that Leah had got an ‘A’ in both of these exams. I immediately phoned the Sperrin Ward to let them know and to thank them for all of their help – Leah was always very well cared for on this ward.

This photo was taken in hospital at 9.30am on Monday 20th May 2013 while Leah was doing some last minute revision for her exams.