Let me be Singing when the Evening comes.

My baby asked for a shopping trip this week. She’s 11 and has never liked being referred to as “my baby”.

My Mum referred to me as her baby until dementia robbed her of her faculties a few years before her death in 2008. I liked this term of endearment.

Miriam and I both tried on shoes in New Look and then she tried on clothes in Primark.

She looks taller than me, but she isn’t really!

Since Leah was a toddler she absolutely loved shopping and would never have allowed us to go shopping without her.

We still find ways to include her – we went to the gardening section in one of the Pound Shops and Miriam chose some items for Leah’s grave.

On this occasion Miriam chose a solar powered butterfly and a dragonfly. She also picked a shepherds crook (with a butterfly inset), on which we can hang things, like sun catchers.

I was glad when she chose a shepherd’s crook – it reminded me of the the 23rd Psalm and the Good Shepherd.

When the shops had closed up for the night, we headed over to the cemetery to place our purchases on Leah’s grave.

I suppose there was a time when visiting a cemetery in the dark would have seemed like a scary thing to do. Not now though – how could the place where we left the body of our beloved Leah ever seem scary?

We arranged our purchases with the light from the torch on Miriam’s mobile phone. Then we talked about the view and commented on the attractive variety of solar lights/decorations on some of the nearby graves. Surprisingly, it feels quiet and peaceful in the cemetery at night.

The curvy string of lights is the Foyle Bridge across the river in the distance.

After this it was time for the obligatory trip to McDonald’s.

Inwardly I reflected on the fact that it’s two years this past week since our very first visit to Belfast City Hospital.

Two years since we left behind the familiarity of our local hospital and faced all that was new and scary and unfamiliar.

Two years since a doctor we had only just met, told us things about our daughter’s diagnosis and prognosis that no parent ever wants to hear.

His phone call the previous week had told us that Leah needed a bone marrow transplant, but by the time we’d finished our face to face meeting with him, it seemed as if it was actually a miracle that our daughter needed.

For weeks afterwards a little voice inside my head kept saying “This is too much.” and another voice would quickly respond “But He is enough – God will get you through this.”

On Tuesday the 24th April ’13, before we left the house to go to Belfast City Hospital, I posted on my Facebook page, some words from one of Matt Redman’s songs that was so special to Leah and I:

“The sun comes up, it’s a new day dawning
It’s time to sing Your song again
Whatever may pass, and whatever lies before me
Let me be singing when the evening comes”

When we arrived home that evening my heart was breaking.

I wrote underneath my earlier Facebook status that if I didn’t have God in my life to help me, I certainly wouldn’t have the strength to still be singing.

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.