Leah Is My Sister

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.

Miriam getting blood taken to see if she was eligible to donate her bone marrow to Leah in April 2013
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 Miriam and took her Gromiteering.
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 Miriam and Leah together on the 20th December 2013.
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.

The Forget Me Not Service

The Forget Me Not Service


Yesterday 12 of us went to the N.I. Children’s Hospice for their annual “Forget Me Not” Service. It was very moving to be together with so many people each grieving the loss of a child. The service was quite simple but I found it very emotional. Before the service started there was an opportunity to display a photo of Leah and attach messages to it.


The service opened with the choir singing the song “Somewhere only we know” that is associated with the 2013 John Lewis Christmas Advert. Just before Christmas 2013, Leah and I were invited to a school assembly at her former primary school, to receive a cheque for monies they had raised to support the Clic Sargent charity.

However that morning the pain from Leah’s spinal fracture was very severe and she was unable to come with me. I wept for most of the 15 minute drive from home to the school. It just felt so wrong that my daughter – who was supposedly recovering and “getting better” – seemed to have so much pain and a decreasing quality of life.

Every month since her transplant in August, Leah had developed a new complication or side effect. I found it hard to escape the nagging sense of uneasiness that I felt in my heart regarding Leah’s medical condition.

At the school assembly that morning they played the John Lewis Advert to illustrate a point in the principal’s talk. We don’t have a live television connection at home so I didn’t hear the song again until yesterday, but it immediately caused me to remember the sad feeling I had that December morning, that something in my daughter’s body just wasn’t quite right.

Leah’s hospital consultant in Belfast was very vigilant and very protective of her and she was being very closely monitored, so nothing was ever missed that could possibly be treated. In a discussion I had with Leah’s Bristol consultant after her death, he & I concluded that a mother’s intuition can sense things that can’t be picked up by blood tests or X-rays.

The hospice have two large memory books containing the life stories of the children who have died and these are carried up to the front during the service.


Many weeks ago our hospice outreach nurse gave us blank sheets of card to write Leah’s life story for insertion in the Memory Book but these remained blank, as the thought of filling them in just seemed too painful for me. Last Tuesday a very kind friend came to our house and helped me to fill these pages in for insertion in the Memory Book before the service today.


After the service we collected Leah’s memory stone and carried it out to the Quiet Garden and Rachel chose a space in which to place it.


We spent some time chatting to parents whom I first met through work nearly nine years ago. When Leah was a little girl she met their very ill wee baby and her heart was moved to pray for that wee baby every night, during the time that I was in contact with them.

After we left the Children’s Hospice, Leah’s Auntie Evelyn had us all back to her house for tea. Leah and I stayed with Evelyn in Belfast for two weeks when we first returned from Bristol and I hadn’t been back to her house since, so I found that very emotional too.

However it was just lovely to have that time together – we were well fed, we enjoyed each other’s company and we managed a few laughs too.