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.

No Child Should Ever Grieve Alone

Children’s grief is a minefield that our family continue to navigate. It is both a very steep learning curve and a very rugged terrain.

Late yesterday afternoon a friend (who also walks the path of child loss) messaged me to say that Brenda Kelso was giving a talk in Limavady entitled ‘Stress and our Kids ~ How to Help’ so I came home from work, had a very quick bite to eat and drove to Limavady.

Brenda is an Educational Psychologist and a Christian Counsellor. She is also an excellent speaker who I have heard several times over the years, but never on this topic. My paid employment involves supporting families, so I thought that it would be useful for me to go and hear what Brenda had to say.

I’m not sure what I expected, but I was soon in tears. Shortly after Brenda began her talk she listed the potential causes of significant psychological distress in children and young people and bereavement was top of her list.

I came home and researched some of the links that Brenda had given us. This led to me reading more and more, as surfing invariably does.

I read here that the negative impact on children’s psychological well-being may continue to emerge – and in some cases intensify – for at least two years following the death and that a substantial minority of children and young people will experience clinical levels of difficulty.

One way in which children and young people’s distress can manifest itself is via somatization – that is the manifestation of psychological distress by the presentation of bodily symptoms. For any bereaved parent (especially one whose child has died from physical illness) this is indeed a minefield.

For years I behaved as if calpol cured everything. My eldest has no intention of allowing me to forget that no matter how unwell she was feeling, she was given a spoon of calpol and put on the school bus. Those days are long gone. Nowadays if one of them mentions recurrent headaches, thoughts of a brain tumour pop into my head. Bruises on their legs and thoughts of leukaemia suddenly appear.

These thoughts are unwelcome and uninvited. As soon as I recognise these erroneous thoughts I challenge them. I’ve had recurrent headaches since early childhood, for which I take daily prescription medication and I certainly don’t have a brain tumour. Bruises on limbs are a normal part of growing up. Still, when my anxieties get the better of me, I phone my local GP surgery and they are always very accommodating.

While surfing this morning I discovered a TEDx talk by Carly Woythaler-Runestad entitled No Child Should Ever Grieve Alone. Carly Woythaler-Runestad, MHA, has been the executive director of the Mourning Hope Grief Center for over 7 years. In this excellent TEDx talk Carly aims to encourage us to rethink how children’s grief is addressed and how we can create a supportive environment which emphasizes the holistic needs of bereaved families. Please take 10 minutes to watch this thought-provoking talk, some child somewhere might be glad that you did.

Leah Is My Sister

I was going through my 11 year old daughter’s paper work from her past school year today and I found this. I asked her permission to publish it on my blog.

I also came across several instances where she had to write about her family. In each instance she included Leah and said that she had three siblings. I thought that all of that was so beautiful and I felt so proud of her.

Adults have told me of instances where children they knew had died years ago and their names were no longer mentioned. I’m so glad that our youngest is comfortable talking and writing about her sister who loved her so very much.

I also know from talking to other people, that in years gone by, children were shielded and “protected” from the so-called unpleasant realities of life. This was sometimes done by sending children away to stay with a relative when there was serious illness or death in the house.

Some adults who experienced this as children have told me that they found being excluded from what was happening, a hugely traumatic experience, as they were denied the opportunity of being able to process what was happening and of being able to say goodbye to their loved one. They then found it extremely difficult to work their way through the stages of grief and it compounded their distress.

I never knew that our story was going to end like this and I certainly didn’t have any time to work out a “game plan” for the best way to do things. However, a combination of divine inspiration and mother’s intuition, led me to involve all of our children in Leah’s journey as much as possible.

When we received that first phone call with Leah’s diagnosis on April 19th 2013, the consultant in Belfast suggested “tissue typing” our other two teenage children but not our youngest, who was only nine at the time. I immediate disagreed with him and told him “you can’t make a difference in our children“.

When I got off the phone and discussed it with our youngest, she demonstrated a mature understanding of the situation and said that she wanted to be part of whatever was needed to save Leah’s life.

Our youngest getting blood taken to see if she was eligible to donate her bone marrow to Leah in April 2013

She also accompanied Leah on one of her appointments to the Sperrin Oncology/Haematology Unit in Altnagelvin Hospital in early July, past the sign that reads “No Children Allowed.” Technically speaking Leah was also still a child herself.

In early June when I received a telephone call with a summons to Bristol for an Outpatients Appointment for Leah and Simon, I instinctively asked on the phone if we could bring our youngest with us. I was told that it would be no problem, as there would be a Play Therapist there to keep her amused.

It was so important for her to see firsthand what a lovely “child friendly” hospital that Leah would be having her treatment in. The lively presence of our youngest on this trip, lifted all of our spirits too, as she was the only one who hadn’t sat through a depressing discussion of Leah’s diagnosis and prognosis.

On the 21st July 2013, our youngest flew to Bristol with Leah and me. On Monday morning the 22nd July, our youngest said goodbye to Leah and me at the door of the Bone Marrow Transplant Unit. It was only meant to be a temporary goodbye, as Leah expected to just get a test dose of chemotherapy and be back out again within hours. However she very quickly developed severe septicaemia and became very seriously ill.

A friend looked after her and took her Gromiteering.

Our youngest next saw her sister at the end of August. Leah was an inpatient on the Adolescent Ward by then, but she was allowed out to Sam’s House, the Clic Sargent Hostel, for a few hours each day.

The first day, Leah and her younger sister had great fun together, using the recreational facilities at Sam’s House. By the last day Leah was starting to become unwell and she had a lot less energy.

Our youngest and her dad visited again in October, when Leah was very unwell. Leah was overjoyed to see them both. She wasn’t well enough to leave the hospital, but they did girlie things together in Leah’s hospital room, like painting each other’s nails. Our youngest also helped me to shop for treats for Leah, while her Dad kept Leah company.

Once Leah and I finally got home in November, Leah and her younger sister became inseparable. Every day when she got off the school bus, she headed straight for Leah’s bedroom and there she remained until I chased her off to bed.

One weekend, for a special treat, our youngest was allowed to have a sleepover with Leah. Leah’s immune system was very weak, so I was of course very particular about ensuring that her younger sister adhered to strict standards of hygiene.

The last ever photo taken of Leah and her younger sister together on the 20th December 2013.

On Leah’s last evening at home, Thursday 26th December 2013, Leah cooked a cheese omelette for herself and her younger sister. Then they played together on Leah’s new WiiU. Their laughter rang out through the house.

I write here about how Leah pleaded in ICU for younger sister to be allowed in to visit her. I still feel sad about that.

A few months after Leah died, her younger sister was given the opportunity of attending an Art Therapy group for children dealing with loss, at the ETHOS Family Support Hub in Shantallow.

She doesn’t like talking about her feelings, but she loves arts and crafts.

Attending this group seemed to help her to find a way of expressing her love for her sister through arts and crafts. After attending this group, she started printing off lots of photos of her sister and making up collages of these photos for her bedroom walls.

I’m glad that she’s found a way of expressing herself that she feels comfortable with.

Grieving For A Sister

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. 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.

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.

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.

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.

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:

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.

The Birthday Cake

Miriam, my youngest, will be 11 tomorrow.

She pleaded with me all week to bake her a rectangular sponge cake, cover it in chocolate butter icing and cut it into 25 pieces for her to share with her friends in school today.

I tried to negotiate various alternatives to this but she wouldn’t budge.

In recent years Leah did most of the baking in this house.

This very week last year, she and I were busy at Sam’s House in Bristol baking farewell gifts for the staff in Oncology Day Beds. For Leah’s Fifteens recipe click here.

On Friday 25th October ’13 we went to the hospital laden with home made sweetie goodies, for Leah’s last ever visit to Bristol Children’s Hospital.

Once Leah died, the baking cupboard became like a no-go area for me – it was just too painful.

It is so, so difficult for the remaining children when their sibling dies.

They have to deal with their own grief and loss, as well as the effect that this is having on their parents and on the entire family unit.

Nothing is normal any more.

Miriam’s teacher told me the sweetest thing recently.

The pupils were asked to do a written piece about their ‘hero‘.

All the other pupils wrote about famous people like pop stars and film stars.

Miriam wrote about Leah and said that she is her hero, for the amazing way in which she had dealt with her illness.

Thinking about this makes me cry, but it also blesses my heart so much to know that Miriam is proud of Leah.

I feel so proud of both of them.

Miriam has always been absolutely adored by her two older sisters.

Leah playing horsey with Miriam.

Rachel and Miriam in 2013

Although it took me most of yesterday, in fits and starts, I’m really pleased to say that a very happy young girl is away to school today with homemade birthday cake for all her friends.

Tonight Miriam will have two friends over for her birthday sleepover.

This evening I’m taking them to a “pool disco” for their age group at our local Leisure Centre.

Miriam’s Auntie A. made her a gorgeous birthday cake for us to have here at the house.