A Sibling’s Grief

A Sibling’s Grief

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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 last 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 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. img_0313

Grieving For A Sister

Grieving For A Sister

CHRISTMAS 2012 Leah and Miriam in their new onesies.
December 2012 Leah and Miriam in their new onesies.

Last night Miriam was upset about a school playground incident. I listened to her and hugged her as she cried.

Then I went to my room and I cried too – upset that my little girl has been left like an only child, with only her mum and dad to turn to much of the time.

From Leah's Facebook page
From Leah’s Facebook page. The caption underneath reads “I do love my little sister.”

Up until September 2012 Miriam had two older sisters living at home. The three girls had each other to discuss their woes with. Oftentimes I heard things second hand rather than first hand.

Leah was the primary dispenser of hugs. From a young age, Leah’s emotional barometer was very sensitive, she usually knew if anyone was upset and she offered them comfort. Even while still of Primary School age, Leah could sense if I had a difficult day at work and she would offer me a hug.

I remember one day when Leah was very young, maybe 6 or 7 years old, I was very grumpy and got very annoyed with her regarding some childhood misdemeanour. She fled to her room in tears. When I had calmed down, I went to her room to speak to her and she looked at me with her big brown eyes, like a wounded puppy, and exclaimed “Mummy, you’ve hurt my feelings.” I didn’t know what to say.

I remember another time when Leah was 5 years old and I was very worried about a family situation, but trying not to show it. I remained calm on the outside (or so I thought) and I was very careful about what I said in front of the children. Leah’s big brown eyes looked up at me as she asked “Mummy, is this the worst day of your life?” I was speechless.

I know what it feels like not to have sisters living at home to share secrets with. By the time I was Miriam’s age, all four of my siblings had left home. I hated feeling like an only child, with only my parents for company, kind and caring though they were.

Similar to Miriam, I was a ‘wee late one‘, except that it was Cork City not Northern Ireland, so Mum used to tell people that I was “an afterthought – her baby“.

At home she called me “a chuisle, mo chroí” which is Gaelic for “the pulse of my heart“, or else she called me “Vicky, a leanbh” which is pronounced “Vicky Alanna” and means “Vicky, my child” – a term of endearment.

This is how Leah came to be named Leah Alanna.

As Miriam sobbed her heart out last night, it occurred to me that her tears were probably not only regarding the incident in question – the usual stuff of pre-teen girls – but her tears were also expressing the loss of a sister who had always been a source of comfort.

Miriam and Leah were very close. Miriam accompanied us to Bristol for Leah’s first Outpatient’s Appointment.

Miriam accompanied Leah and I again when we flew over for Leah to be admitted for her Bone Marrow Transplant.

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Aldergrove Airport 21st July 2013

Miriam came right to the door of the Transplant Unit, beyond which no children are allowed, unless they are patients. The Transplant Unit swallowed Leah and I up, whilst Hospital staff cared for Miriam until our childcare arrangements kicked into place.

Once Leah was back out of the Transplant Unit, five weeks later, Miriam was over twice to visit us with her Daddy. Leah loved when family came to visit.

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Bristol 28th AUGUST 2013

During the 6.5 weeks that Leah had at home before her final hospital admission, if Miriam wasn’t at school, she barely let Leah out of her sight. She used to get off the school bus, get changed and go straight down to Leah’s bedroom. There she stayed until bedtime.

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Leah ready to attend Nic’s formal on the 21st November ’13

On one occasion, for a very special treat, she was allowed to sleepover in Leah’s bedroom with her.

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This was the last ever photo taken of Leah and Miriam together – 20th December 2013

When Leah was critically ill in ICU, she was desperate for Miriam to be allowed in to visit her, but the rules of ICU were “No Children Allowed“.

I tried to explain this to Leah, who was on a ventilator and communicated by typing on her iPad, but she insisted that I could just bring Miriam on in without permission, because she didn’t look like a young child. This was Leah’s reply to me on the matter:

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I asked the staff about bringing Miriam in to visit Leah, but they were concerned that it would be distressing for Miriam to see her sister so ill and said that she needed to be helped to prepare for this. A Family Worker from the local Hospice was sent out to our house to start this work.

Of course, while all of this was happening, Leah’s condition was gradually deteriorating and both time and opportunity were lost.

Eventually, at 1am on Thursday morning the 16th January 2014, Horace drove to Belfast City Hospital with Miriam and Simon. I sat in the car and explained things to them. Then the two of them accompanied me into the ICU to say their goodbyes to their much loved sister, who was now deeply unconscious and hooked up to countless machines.

It was one of the saddest moments of my life.

One of the many challenges for a bereaved parent, is trying to support our grieving children, when oftentimes we feel barely able to support ourselves.

Wave after Wave Crashes over Me

Wave after Wave Crashes over Me

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I think Leah had just given Simon this book for his birthday. From a young age Leah put a lot of thought and effort into choosing gifts for family and friends.

The waves of grief are never far away.

Our teenage son has been unwell for a week so I took him to the GP today.

He’s almost 16 but he wanted me to do most of the talking.

The GP asked if being unwell had woken him up during the night. I explained that he’s a very deep sleeper and in the past when he’s been sick during the night it was never him who woke up it was………..

I couldn’t finish the sentence, I felt overwhelmed with emotion and memories.

Simon and Leah shared a bedroom until their early teens.  Every time Simon was sick during the night it was Leah who got out of bed and came and called me.

2004 It wasn't always this cosy and they seldom shared a bed - Simon slept in the top bunk and Leah slept in the bottom bunk. We draped pretty curtains around her bed as she got older, to try and give her some privacy.
2004 – It wasn’t always this cosy and they seldom shared a bed. Simon slept in the top bunk and Leah slept in the bottom bunk. We draped pretty curtains around her bed as she got older, to try and give her some privacy.

After leaving the GP surgery, I had to go to the chemist for a prescription and I just about held it together. Thankfully I didn’t meet anybody that I needed to speak to.

So many memories came flooding back of Leah padding into our bedroom in the middle of the night and quietly telling me “Mummy, Simon’s being sick.

In the car on the way home Simon asked me why I was shaking my head. I hadn’t actually realised that I was doing this, but I was unconsciously  trying to empty my head of the realisation that our daughter would never again pad her way to her parent’s bedroom in the middle of the night, to tell us that her brother was being sick.

I asked Simon today when had they stopped sharing a bedroom and he replied “I can’t remember – whenever Leah got fed up of me being sick during the night!

With all that happened with Leah in 2013 I had actually forgotten all about those episodes – until today.

Simon is now being treated for Helicobacter pylori for the second time. The first time was three years ago when he was 12. He had been unwell for months beforehand but he was like a new boy once he got the 7 day triple therapy into him, so hopefully it will work equally well this time.

He struggles with tablets so prefers to take medicine in li
He struggles with tablets so prefers to take medicine in liquid form.

The waves of grief, they crash over me, wave after wave.

Sometimes there’s bigger gaps between the waves, sometimes there’s lesser gaps.

As I reflected upon this I remembered the words of

You Make Me Brave by Bethel Music:

I stand before You now
The greatness of Your renown
I have heard of the majesty and wonder of You
King of Heaven in humility, I bow

As Your love
In wave after wave
Crashes over me, crashes over me
For You are for us
You are not against us
Champion of Heaven
You’ve made a way
For all to enter in

I have heard You call my name
I have heard the song of love that You sing
So, I will let You draw me beyond the shore
Into Your grace, Your grace

As Your love
In wave after wave
Crashes over me, crashes over me
For You are for us
You are not against us
Champion of Heaven
You’ve made a way
For all to enter in

You make me brave
You make me brave
You called me beyond the shore
Into the waves

You make me brave
You make me brave
No fear can hinder now
The love that made a way