One of the many differences since Leah died is the quietness.
The house feels quiet, the car feels quiet and we are quiet, often lost in our thoughts and in our memories.
In September 2012, Rachel, the eldest of our four children, left home to go to university.
Then in November 2012 I started a new job.
December 2012 Leah had her first blood test.
In July 2013 Leah and I went to Bristol Children’s Hospital and we were away from home for 16 weeks.
December 2013 Leah was admitted to ICU and in January 2014 she died.
It feels as if just yesterday we had a noisy house and car full of children, but today there is just quietness.
Leah was the only one of our four children who ALWAYS played her music too loud and this used to drive me crazy.
In the car she used headphones, but even then she had her music turned up so loud that it still irritated me. I lectured her endlessly about the potential damage to her hearing.
Sometimes I would play my music through the car stereo to drown out what leaked from her earphones. Then she would turn hers up even louder, as she said that my music was drowning hers – parents of teenagers, you know how it is!
Now it all just seems too quiet.
Was it really so long ago that I was driving our 7 seater car with our kids and their cousins jumping about and belting out the Veggietales song “God is bigger than the Boogie Man”?
Christmas 2012 turned out to be quite sad, but not because of Leah – her first blood test was a week later on her 15th birthday.
On Christmas Eve, Miriam (then aged nine) was playing with her much loved hamster Pepper, when one of our house cats leapt across the kitchen and sank his teeth into this tiny bundle of fur. I can still hear Miriam’s anguished cry.
The cat ran off and poor Pepper was gathered up, shivering in fear. We hoped and prayed that this adored pet would survive.
By Christmas morning Pepper was a sorry sight. Here’s Leah and my husband trying to revive it – sadly it died before breakfast.
To further compound this tragedy, while we were all in the same room that morning, the aforementioned house cat managed to get the now deceased Pepper out of it’s cage and eat it, without any of us noticing. This meant that the hamster was denied a decent burial, as befits a much loved children’s pet.
There was no consoling Miriam. Christmas Day 2012 became a rather sad event.
Miriam was desperate for another pet to replace Pepper. I pointed out that there was no point in getting another hamster, as said cat had obviously now acquired a taste for hamsters and would not be deterred. My husband said “no more cats” as we already had two house cats – one belonging to each of our two older daughters.
However once Leah began to have investigations for a blood disorder I started to think very seriously about Miriam’s need for another pet of her very own.
By mid February 2013, I had become convinced that Leah had some form of bone marrow failure and was seriously ill, although at that stage the paediatric haematologist in the Royal stated that Leah’s weekly blood results were “not consistent with any nasty bone marrow diseases“! I didn’t believe this doctor, but I hid my fears and wore a smile in front of Leah and recorded my thoughts in my diary.
I felt that a having a pet of her own would provide Miriam with a source of comfort as well as a distraction, during the inevitable disruption to family life that we were facing.
On Saturday 16th February, the start of midterm, Leah and I accompanied Miriam to our local animal shelter to choose a new cat. Miriam chose a young tabby and called it Mittens.
Mittens came with quite a crazy but very endearing personality. Having three house cats in our tiny bungalow, along with a daughter who was severely immunocompromised, proved to be a bit stressful for Horace and I.
Mittens had no road sense. If anyone left the outside door open Mittens darted straight across the road like greased lightning. Then Miriam ran across the road after her cat and my husband ran after Miriam. The many stresses of family life!
When Leah was on intravenous antibiotics for a week, the Rapid Response nurses came to our house three times a day to administer these via a drip and the cats were into everything – I was quite embarrassed at times and secretly hoped that these nurses were animal lovers!
Leah’s cat Charlie appeared to miss her terribly once she left for Bristol and sadly he was killed on the road while we were away.
The decision was made that once we moved into our new house after Leah’s transplant, there would be NO cats allowed indoors. I think the cats coped with this better than the children, but at least it drew Miriam outside for some fresh air!
Miriam absolutely adores Mittens and often wears her like a scarf. Mittens and Flash (Rachel’s cat) often sit on the window sills on either side of our front door, like guards on sentry duty.
Recently I was away in Belfast at a Women’s Conference with a group of women from our church. I phoned my husband in the afternoon and heard the words that I did not want to hear “Mittens has been hit by a car and is injured.” Mittens was still alive and in no distress, but lying in her bed and reluctant to eat or drink. My heart sank.
Thankfully Mittens recovered from this trauma but the experience reminded me of when Leah’s first cat Bibs died. He was a very affectionate cat who had come into our lives when my mum was ill.
My mother died early in 2008.
I picked up Bibs dead on the road later that year at 7am on a cold November morning and sobbed my heart out. Leah was just about to sit her 11+ Transfer Test so we had to hide the news from her for a period of time. Leah absolutely broke her heart when she found out. I remember her sitting at the kitchen table crying like she was never going to stop. As a mum I felt so helpless in the face of my daughter’s utter devastation.
Sometime after this Leah wrote an account of the life and death of her beloved cat Bibs – I cried when I first read it and reading it even now reduces me to tears.
MY MEMORABLE EXPERIENCE by Leah Whyte
Well, my story begins with a little stray kitten, who I just happened to fall in love with. So, I guess I should tell you just how this little kitten happened to walk into my life.
Me, my dad, my brother and sister, were going to Derry to pick my mum up from the bus depot as she had been away in Cork.
On the way my dad stopped at a man’s house. This man happened to feed cats and he stumbled upon that poor little kitten that became a most loved pet. The man offered the kitten to me. My dad doesn’t like cats much but he has a kind heart and he wanted to help the kitten so now I had my very first cat, all of my own.
I don’t think he liked the car much because he meowed and scraped at the window. But I was smart enough to know not to open the window. Finally he settled down on my knee. Thankfully he didn’t need the toilet.
As soon as we got home I rushed inside to show my older sister my, yes I’m proud to say, my cat. She was also excited. We decided to call him Bibs as he had a black bit at the bottom of his chin.
I so definitely didn’t want to go to bed but, it was getting late and I had school in the morning. With help from my dad I made a bed for Bibs by the fire so he would be warm. I made sure Bibs was comfortable. I climbed into bed amazed at what an exciting day I’d had.
After school the next day and for weeks to come I slowly introduced Bibs to Flash, my sister’s cat and was surprised as they got on extremely well.
Bibs was a very good cat, although i disapproved whenever he had feathers stuck to his mouth, as he had a really bad habit and if you haven’t guessed yet, yes, he liked to eat birds. He also couldn’t sit still for five minutes, Bibs was a very playful cat and very hyper.
Ok so now we are in December 2007 and we’ve been together four months. I’ve been to the Pound Shop ( yes everything is a pound) and I’ve bought Bibs a cat stocking with cat treats and cat toys inside. On Christmas Day I opened my presents. I then brought Bibs in to open his. Ok, I admit it, I opened his, but cats can’t exactly open presents can they? Bibs didn’t show much enthusiasm but he seemed happy enough.
I wasn’t sure when his birthday was. So I made up that it was the 16th August. He didn’t understand what all the fuss was about. I made a birthday cake with cat food and he scoffed it all up.
This is the tragic part of my story: So now it’s the 8th November 2008. I couldn’t find Bibs, but I didn’t really care as sometimes he did wander off. Then my dad breaks it to me; he found Bibs dead, my poor Bibs was ran over by a car. My mum and dad decided not to tell me until Saturday even though he got ran over on Thursday, as on Friday I had my 11+ transfer test and a wedding straight after. I cried and cried. I couldn’t believe Bibs was gone forever and ever.
Now comes the even worst bit; I had to bury him. Dad picked a nice place down by the stream to bury him. I picked Bibs up and held him as close as I dared, I didn’t want to get blood on my top. No purr, no heartbeat, no warm body, instead a cold stiff cat. Those once energetic legs, never to be bent again. I set Bibs in the hole, realising this was goodbye. I tried to cover him with soil using the spade. But I couldn’t see, I could have cried a river. We planted daffodil bulbs to grow in the spring. I will never forget my darling Bibs. I still miss him a lot; he will always be in my heart; my beautiful little black and white cat.
“Then Simeon blessed them and said to Mary, his mother: “This child is destined to cause the falling and rising of many in Israel, and to be a sign that will be spoken against, so that the thoughts of many hearts will be revealed. And a sword will pierce your own soul too.”
When Jesus was a baby, Mary and Joseph took him to the temple to present him to the Lord as was the custom in those days. A man called Simeon, who we are told was “righteous and devout”, took baby Jesus in his arms and spoke the above words.
What stands out for me is that Mary was told that as a result of all that her son would suffer “a sword would pierce her soul”.
Jesus came to earth to die for our sins, which is incredibly good news. Was Mary told “don’t worry, be happy“, because this would all work out for the best? No, she was told “a sword will pierce your own soul“.
Even two thousand years ago, there was a profound understanding of the love of a mother for her child, and the utter devastation that a parent feels when their child suffers and dies.
Leah faced death with serenity and without fear. I know that she’s in a much better place and is rejoicing forevermore – a princess united with her King.
However, for Horace and I, Leah’s illness and death is like a sword in our hearts. Leah’s passing has left a gaping hole in our family. Sometimes my grief is so overwhelming that I wonder if my kids feel like they’ve lost their mummy as well as their sister? Grieving just drains our emotional energy as parents.
There’s so much to process. Leah had just nine months from diagnosis to death. We’re still trying to take it all in. Sometimes I even struggle to believe that the events of 2013 really happened.
Asda have a slogan called “rollback” where they claim to rollback their prices to a time when things were cheaper. Since Leah died I’ve often fantasised about being able to roll my life back to an earlier time when ALL of my kids got off the school bus at our house everyday and I had their dinner ready.
Leah always arrived home hungry and got upset if she couldn’t smell dinner cooking as she came through the door.
This is Leah last year with Miriam’s cat Mittens.
That’s partly why I’ve still kept all of Leah’s medication. I periodically need to open her medication drawer and look inside, just to convince myself that the events of the past eighteen months really did happen. That it wasn’t all just some crazy dream from which I’m about to wake up.
I went back to work part time in the Health Service two weeks ago. I’m deeply appreciative of the fact that my employers held my post for me while I was off and were also very supportive of me throughout that time.
The weekend before I returned to work saw me plunged into an even deeper level of grieving than I had previously experienced. It was awful, just awful.
Before Leah was diagnosed I had written in my diary “Is it normal for someone to enjoy their work as much as I enjoy mine?”
After all the experiences of the past year I wasn’t sure if I would even still like my job any more. I didn’t know if I could leave my grief aside sufficiently to be able to focus on my work.
Well, so far so good. I do still love my job and I have found myself able to focus. I find it a very welcome distraction from the sword in my heart. I’m glad to once again be a provider within the Health Service rather than a recipient of services.
I certainly don’t forget about Leah or any of my children while I’m working – I just temporarily forget my pain.
Then when my day’s work is done I walk out the door and connect with my grief and loss once more. Sometimes I’m crying before I even drive out of the car park. Still, it’s good to be back at work.
During Leah’s illness and subsequent death, I submitted three Health Service related, written complaints. None of these were ever intended to be a “witch-hunt” or to single any one person out for criticism. In my letters I always sought to emphasise the positive and to point out the strengths within the services that we were receiving, as well as highlighting the changes that I felt were needed. As a mummy I wanted the very best services possible for my daughter and for other seriously ill young people too.
Sometimes it’s not lack of money that’s the problem, it’s lack of awareness of how our behaviour as professionals impacts the recipients of the services we provide.
Yes the NHS is strapped for cash, yes there have been some awful cutbacks, but ultimately the NHS is made up of individuals, some of whom are incredibly stressed because of very heavy workloads.
However, overall the NHS has been very good to Leah and I. Overall Leah received excellent medical and nursing care across three Health Trusts. Overall we have been well supported emotionally by the health professionals involved in Leah’s care. We met some amazing individuals – consultants, doctors, nurses and ancillary workers – whose compassion and genuine care for us was very evident and whose timely hugs said more than words ever could.
Now that I am once more a provider within the Health Service I hope and pray that I also can make a positive difference in the lives of others.
As I travel to and from work I usually have Rend Collective, Leah’s favourite band, blasting out:
You’re the joy joy joy lighting my soul
The joy joy joy making me whole
Though I’m broken, I am running
Into Your arms of love
The pain will not define us
Joy will reignite us
You’re the song
You’re the song
Of our hearts
The dark is just a canvas
For Your grace and brightness
You’re the song
You’re the song
Of our hearts
Today the sun is shining and that initially had me in floods of tears……whenever the sun shone Leah used to climb out the bedroom window onto the flat roof of the boiler house and sit there to study or read a good book.
Her much loved cat Charlie usually lay sprawled out beside her. Charlie also slept in the bed beside Leah every night. Leah called him “my chicken” and hugged him tight and told him her secrets.
When she was upset his fur soaked up her tears. While in the transplant unit Leah used to look at photos of her cat and tell me how much she missed him.
Then the day came when my husband phoned me and told me that Charlie had been killed on the road. It nearly broke my heart to have to tell my very sick child that her cat was dead.The light seemed to disappear from Leah’s eyes and she hardly spoke for three days.
We were in Bristol Children’s Hospital and the Irish Sea separated us from our home in N.I.. Leah was being nursed in isolation. Oh how very much I wished I could take away the pain of her homesickness, the symptoms of her illness and her grief for her much loved cat who had been her constant companion and a huge source of comfort to her.
Sadly I could do none of these.
All I could do was be there for her, quietly supporting her, praying for her and with her, and reading the Bible to her when she asked me to. Like so many times in this illness journey, my heart was breaking for my daughter.
Eventually Leah began to smile and laugh again and we shared our silly jokes & funny stories. She was such good company. She knew that the source of her strength was in God and there wasn’t a day went by that she didn’t want me to read and pray with her.
Sometimes her eyes would close and I would stop reading, thinking she had gone to sleep, feeling quite exhausted myself, then Leah’s eyes would flick open again. I would smile to myself, remembering days & nights spent rocking one of my colicky babies in their pram – their eyes also sprang open the minute my tired arms stopped propelling the pram backwards & forwards over the door saddle in a desperate attempt to soothe my fractious infant.
When exhaustion prevented me from continuing to read to Leah I snuggled up beside her in her hospital bed and cuddled her until she fell asleep. Then I would get out and lie in my own comfy bed which was almost beside hers.
I slept quite well in Bristol, secure in the knowledge that whenever my daughter needed me I was right there beside her. Secure also in the knowledge that if we needed medical help, we were in the care of some amazing nurses and doctors.