For the past approximately eighteen years, I have been visiting a woman with a significant learning disability several times a year, when she comes into respite in Derry. When our children were small they used to come with me. Sometimes I take her out for a walk or bring her out to our house, other times I sit and chat with her in the respite facility where she is staying.
Tonight when I went to visit her, she had a beautiful flower arrangement ready to give me to put on Leah’s grave. She had got one of her carers to take her to a local shop earlier in the day to purchase it. She expressed concern that it wasn’t ‘good enough‘, but to me it was absolutely beautiful, especially as it was adorned with love.
This woman is quite comfortable talking to me about Leah and about grief and sadness, she always checks with me that I’m not ‘bottling things up‘. She doesn’t for one minute expect me to be ‘over it‘ in any shape, form or fashion. Despite her very significant learning disability, she totally gets it.
After I had said goodbye to her, I went straight to Leah’s grave with these very special flowers. As I stood there in the darkness sobbing quietly, a form emerged from the shadows and a friendly voice said ‘hi‘.
It was a former school friend of Leah’s, a young girl who’s had to deal with some very significant challenges in life. She was en route to an after school activity and recognised my car parked outside the cemetery. She took the time and the trouble to walk through the cemetery in the pitch dark, knowing exactly where she would find me.
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.
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.
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.
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.
On one occasion, for a very special treat, she was allowed to sleepover in Leah’s bedroom with her.
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.