Six Years On

Six Years On

Barrys

Every year I take the day of the anniversary of Leah’s death off work (annual leave). In the early days, I used to save up my holidays and take the whole week off, as I used to be totally incapable of functioning around this time. Thankfully I am now able to focus on my work on the days leading up to Leah’s anniversary, although every day I am of course very aware of what I was doing at this time in 2014.

img_20200115_210153_1

I decided to take out Leah’s Youth Bible (the one she used most) and have a look through it. As soon as I opened it I noticed that she had cut out her daily devotional  reading for Thursday 31st January 2013, laminated it and tucked it inside the front cover of her Bible. By the end of January 2013, Leah was having weekly blood tests at our GP surgery and had already had her first appointment at the Sperrin Unit; the Haematology/Oncology department at our local hospital. While we were in the Sperrin Unit Waiting Area, waiting to be called into that first appointment, I was devastated when a young nurse bounced up to us and casually asked us if we were waiting on chemotherapy. I was already very uncomfortable with the fact that our fifteen-year-old daughter had to attend an Outpatients appointment at the Haematology/Oncology Unit in the first place, but this suggestion/implication that our teenage daughter, who was so vibrant and full of life, could possibly be ill enough to ever require chemo, was more than I could bear to contemplate. Leah, however, took it all in her stride and chatted away cheerfully to the lovely Clinical Nurse Specialist who subsequently attended to us.

Anyway, I have digressed; the piece that Leah had cut out and laminated is entitled ‘No Accident’ and I thought that I would transcribe it here as it’s very good and I can see why Leah liked it:

 Marianne Williamson said “Love is what we were born with. Fear is what we learned here.” Families, friends and life experiences can create fears and limitations that hold us back. We go about life doing the best we can in this messy mixed-up world in which we live, but if we’re not careful we can allow these fears to take over.

We can live by the labels put on us by others: ‘not good enough, not up to the task, never make it, won’t succeed:’ we label ourselves; ‘useless, worthless, a mistake.’ These labels can cause us to live believing we don’t matter, our life is irrelevant and unimportant even unwanted. Nothing could be further from the truth.

God doesn’t make mistakes. You’re not here by accident! You ‘are God’s masterpiece. He has created us anew in Christ Jesus, so we can do the good things He has planned for us long ago.’ (Ephesians 2:10) “I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.” (Jeremiah 29:11) 

Don’t live a life of fear, receive God’s confident guaranteed hope for your life; He promises ‘Everything I plan will come to pass…’

Shake off your labels. Take time to think about what you believe about yourself. Are you walking around with negative labels attached to you? Look today at what labels God gives you in Psalm 139:14

 

Following this, I looked up Psalm 139:14 in Leah’s Bible. As I expected that they would be, these lovely verses were underlined. It gives me great comfort to think about these particular verses being special to Leah. Psalm 139 has long been one of my favourite psalms too.

Leahs Bible Psalm139

Shortly after Leah was diagnosed she told us “God has a plan for my life, we need to see the bigger picture.” Leah did not say this lightly, Leah was fully informed about the seriousness of her illness and the possibility that she might not recover from it. She struggled with many aspects of her illness, such as the loneliness and social isolation of long weeks spent being nursed in isolation, and the horrendous side-effects from her intense chemo treatment, but she sought daily to trust God through it all and she didn’t fear death.

I remember so vividly one of the occasions when Leah was critically ill on a ventilator in ICU and the doctors weren’t sure that she would survive the next 24 hours: I played “Our God is a Great Big God” on her iPad. Leah was too ill to even open her eyes but her face lit up in a big smile and her hands (despite being attached to various monitors) did all the actions (every single one) to this song – because Leah’s God truly is a great, big God.

 

Another Milestone

Another Milestone

Whenever Leah was diagnosed in 2013 I desperately wanted to keep on working. I love my job and going to work is one of my coping strategies. However, it quickly became apparent that I needed to be at home with Leah. I write about the circumstances that led to me going off work here.

I did not at all begrudge doing this, but at the same time I also felt a distinct sense of loss.

When we returned from Bristol, towards the end of 2013, I had a conversation with my employer about returning to work. I wanted to believe that my daughter was going to be well enough for this to happen.

In early December 2013, I asked for and was given a 2014 work diary. I wanted this tangible symbol that I would soon be returning to work and would need this diary. I kept it in my bedroom where I could see it, as reassurance that all of our lives would soon start returning to normal.

Then, in January 2014, Leah died. I couldn’t imagine ever being capable of working again. Just getting out of bed and getting dressed was quite an achievement. My employers were very supportive and patient. Eventually, by mutual agreement, it was agreed that I would return to my part-time post on the 1st September 2014.

Due to someone being on Maternity Leave, I was offered the opportunity of initially returning to a post in a rural area, somewhere that is more convenient for me. I was very pleased, as I knew that this would make my transition back to work easier, for several reasons.

As September approached, I felt both excited and nervous. The weekend immediately prior to my returning to work was awful, just awful.

My grief intensified.

I imagined that if my employers could see the state that I was in, they wouldn’t even let me through the door, much less let me loose on the unsuspecting public.

Besides my overwhelming grief, I didn’t know if I could still enjoy my work.

I wondered if everything that had happened, had changed me so much, that I would no longer find any satisfaction in what I had once found so fulfilling.

Well, work has been so good for me. It’s the only part of my life that’s more or less the same today, as it was before Leah took ill.

Having something in my life that hasn’t changed, when it feels like everything else in my life has changed beyond recognition, is so reassuring.

To my amazement, I soon discovered that I still knew how to do my job.

Not only that, I still love it.

Many mornings I still cry on my way to work, but as soon as I get there, the busyness of my work commitments push my distress to the back of my mind.

In the first few months after returning to work, as soon as I stepped outside the Health Centre to come home, I used to feel the heavy cloak of my grief descend upon me once again. Sometimes on my way home, I would pull in somewhere and give way to my emotions, so as not to upset everyone when I arrived home.

One day at work, someone momentarily forgot my name and introduced me to a work colleague as “Leah’s Mummy“. I thought that was so beautiful – that acknowledgement that although my daughter is dead, I am still her Mummy. I loved that they weren’t afraid to say Leah’s name in case I would get upset or something. Leah’s school is close to where I was working and her story is well known in the local community.

My work colleagues didn’t make a big fuss of my grief and I wouldn’t have wanted them to. However, quietly, behind closed doors, words of support were uttered and hugs were given, whenever I most needed them. I really appreciated that, as some days I was just hanging by a thread.

Today was my last day working in that rural town, sadly for me.

image image

On Monday 15th June I return to my permanent post in the City. To the office where I was working during the early months of Leah’s illness, until shortly after she received her diagnosis. To the desk where I received phone calls from haematology regarding Leah’s blood tests. To the carpark where I sat in my car and cried hysterically, because those blood results had convinced me that there really was something seriously wrong with my child.

I have a mixture of feelings.

I’m very aware that I’ve so much to be thankful for:

Thankful for paid employment.

Thankful for a job that I love.

Thankful that I was given the opportunity to ease my way back into working life via a slightly quieter rural location.

Thankful for supportive work colleagues, both where I’m leaving and where I’m returning to.

Thankful for relatively good health that has enabled me to not have even one day’s sickness absence since my return.

Thankful that the same God who has been by my side up to now, continues to walk with me and will give me strength for all that lies ahead.

image

Beautiful People Do Not Just Happen

Beautiful People Do Not Just Happen

image

That Thursday, like so many other days, is indelibly imprinted on my mind.

Our Belfast consultant had previously informed me that Leah’s medical details had been sent to the paediatric haematology team at Bristol Children’s Hospital and that they would be discussing her case that day at a team meeting, with a view to possibly accepting her for treatment.

I hated the thought of being so far away from home, but I had done my online research into the hospitals in Dublin, Belfast and Bristol. I had become increasingly convinced that Leah’s best chances of survival, humanly speaking, lay in her being accepted for treatment at Bristol Children’s Hospital.

I spent most of that Thursday afternoon quietly praying.

At 7.20pm our Belfast haematology consultant phoned me to inform us that Bristol Children’s Hospital had indeed accepted Leah for treatment. I was so relieved and so pleased.

Our first phone call from this doctor on Friday the 19th April had been such a negative experience.

Our first meeting with him had been even worse, but in this phone call I started to see him for the caring, compassionate man that he really is.

I eventually chased him off the phone, as I was sure that the poor man had probably not even had his dinner yet. He had given me all the time that I needed in this phone call.

The fourteen weeks that Leah and I spent in Bristol changed our lives forever.

Some of those changes are very sad, traumatic ones.

I hardly know how to word this, because I will NEVER be glad that my daughter suffered and died, yet I can still appreciate the many positive aspects of our time in Bristol.

I very much appreciate the amazing staff and patients and families that Leah and I met during our time there.

Although I’m heartbroken, yet I’m also enriched, by those that I’ve had the privilege of getting to know along this journey.

image

Rescue Me

Rescue Me

Leah is gone from our lives 6 months today, so last night I did something I’ve been wanting to do for a while – I watched My Sister’s Keeper with Miriam, my youngest daughter. The last time we watched this film was with Leah, before she became ill.

image

I’m glad that Leah’s illness and suffering wasn’t prolonged like it was portrayed for the girl in this film.

Leah was unwell for just over 12 months.

I’m glad that I never had to make any difficult ethical decisions either.

I’m especially glad that when Leah was in an ‘end of life’ situation, that God gave me the grace and the strength to let her go and hand her over to her Heavenly Father.

When Leah became critically ill, I was able to talk to her about the possibility of death.

Leah would never have felt that death was a forbidden conversation topic, although of course I was praying for a miracle of healing as that is what I wanted most of all.

This time last year we were packing to go to Bristol. It was a time of fear and excitement.

More excitement than fear to be honest, because I really believed that through prayer, a bone marrow transplant and the amazing expertise of the haematology staff at Bristol Children’s Hospital, that Leah was going to recover.

Any fears I had at that stage, were fears of the “unknown” rather than fears of Leah not recovering.

This is a photo taken of Leah, Miriam, and I, as we were leaving the house to go to the airport to fly to Bristol on the 21st July 2013.

image

We had been told that Leah’s chances of recovery were 70% and that sounded quite good to me.

Recent research that was revealed to us since Leah died, would suggest that someone with Leah’s constellation of symptoms and her specific genetic mutation, only has a 50/50 chance of survival.

I’m really glad that we weren’t told THAT when she was alive. It’s important to hold onto hope and it’s easier – though certainly not impossible – to hold onto hope with a 70% survival statistic than with a 50% survival rate.

So what have I learned in the past 6 months?

I’ve learned that when Leah first died I was too numb/busy/exhausted to really understand the extent of my loss.

It’s only as time goes on that I’m realising how wide, high and deep is our loss.

I’m learning that emotional pain can be relentless.

I’ve learned that small unpredictable things will often cause me to fall apart quicker than the big predictable things – catching sight of one of her favourite foods on promotion in the supermarket often reduces me very quickly to tears. Since she was a toddler Leah loved shopping and invariably accompanied me on shopping trips – now I shop only out of necessity.

Sometimes I feel like I’m standing on the edge of a great abyss of emotional pain and grief.

However I’ve also learned that sadness and joy can coexist in my heart – I’m not sad all the time – there’s many happy moments too with family and friends and I definitely haven’t lost my sense of humour.

I’ve learned that I know some amazing people – people who have surrounded me and my family with their loving support on this sad and painful journey.

I’ve always been a very independent person but I can’t be so independent any more – I rely on emotional support from those around me a lot more than I used to.

I’ve discovered first hand the value of counselling – sometimes my weekly counselling sessions feel like an oasis in the desert – a safe place where I can talk about anything that I need to talk about.

I’m learning more about my relationship with God too – some things I’m less sure of and other things I’m more sure of, but I couldn’t get through any of this without Him.

I read my Bible every day and I use devotional readings, but I still find prolonged prayer difficult.

I continue to find worship songs the easiest way to connect with God and they often become my prayers.

The song that I have recently been listening to on ‘repeat’ is “Rescue Me” by Selah – the lyrics are amazing because they echo the cry of my heart:

Deep is the river that I have to cross
Heavy the weight on my shoulder
I have discovered how great is the cost
Of trying alone to cross over
I try and I try but the current’s too strong
It’s pulling me under and my strength is gone
Don’t leave me stranded

Rescue me, my God and my King
Water is rising and I cannot breathe
Wrap Your arms all around me and
Carry me over, carry me over
(Rescue me)

There is a bridge that is easy to cross
While all of our burdens are lifted
Peace is the land that is waiting for us
Lord, give me faith to believe it
Cause I’m in a storm but I’m willing to fight
I’ll overcome and I will not die with You by my side

Rescue me, my God and my King
Water’s are rising and I cannot breathe
Wrap your arms all around me and
Carry me over, carry me over
(Rescue me)

NOT a happy anniversary.

NOT a happy anniversary.

image

At 4.20pm on Friday 19th April 2013 I received a phone call from a Dr in Belfast City Hospital that we had never met & hitherto didn’t even know existed.

He rang to give us the results of the bone marrow biopsy that Leah had previously had done on the haematology ward of the Royal Belfast Hospital for Sick Children on Monday 25th March 2013.

The information imparted in this phone call ensured that our lives would NEVER be the same again.

The song “Hard Times” by Jamie Owens is a real golden oldie but the words are beautiful and have helped and encouraged me many times during my life –

1. Is the rain falling from the sky keeping you from singing? Is that tear falling from your eye, ‘cause the wind is stinging?
Refrain: Don’t you fret now, child, don’t you worry? The rain’s to help you grow so don’t try to hurry the storm along. The hard times make you strong.
2. Don’t you know, a seed could never grow, if there were no showers? Though the rain might bring a little pain, just think of all the flowers.
Bridge: I know how long a day can seem, when storm clouds hide His face; and if the rain dissolves your dream, just remember His amazing grace!
3. Don’t you know, the sun is always there, even when the rains fall? Don’t you know, the Son will always care, when He hears your voice call?

Have you not googled it?

Have you not googled it?

On Saturday 18th May ’13 Leah was admitted to the Sperrin Haematology/Oncology Adult Ward of our local hospital. She had Febrile Neutropenia and was immediately started on intravenous antibiotics – this condition can be fatal if not treated quickly.

image

By Sunday morning Leah was feeling much better and was sure that she would be able to sit her two GCSE modules the following day Monday 20th May. However when the consultant came round he said that she would not be allowed out of the hospital to sit her exams. When I queried him on this he replied “Mrs Whyte, this is a life threatening situation, have you not googled it?” I didn’t answer him – I didn’t need google to tell me that my child’s life was in danger. He spoke to the nurse and she reappeared a little while later with a computer printout regarding “febrile neutropenia” – otherwise known as “neutropenic sepsis” and how it could very quickly become fatal it not correctly handled.

image

I asked Leah what she wanted to do about her exams and she said that she wanted to sit them, so I said “that’s fine, it’s going to happen“. Inwardly I prayed for strength and wisdom. It was a Sunday morning and I didn’t have contact details for any of the staff in Limavady High School. I was also confined to the hospital with Leah as she didn’t like being left on her own and I didn’t like leaving her.

It’s a long story and various good people helped along the way, but eventually around 6pm Sunday evening I got speaking to Mr M, Leah’s Head of Year, a man who was a tower of strength and compassion throughout Leah’s illness journey. He promised to ring the exam board first thing Monday morning. I then informed the ward staff what we were hoping to arrange.

Monday morning the wonderful Mr M phoned to say that he had authorisation from the exam board for Leah to sit her two exams in the hospital that day. An invigilator was on his way from Limavady High School to the hospital in Derry/Londonderry with the exam papers – English Literature and Chemistry. I went to the nurses station to update them. They informed me that Leah wouldn’t be allowed to sit these exams without authorisation from her consultant and he was busy in clinic. There was considerable stress until the consultant could be contacted and brought to the ward to give his permission. Thankfully everything got sorted out.

Leah sat her exams in the ward sister’s office. It was the first time that a patient had ever sat GCSE modules on this ward. In August ’13 when Leah was in the Bone Marrow Transplant Unit in Bristol, Mr M phoned us to say that Leah had got an ‘A’ in both of these exams. I immediately phoned the Sperrin Ward to let them know and to thank them for all of their help – Leah was always very well cared for on this ward.

This photo was taken in hospital at 9.30am on Monday 20th May 2013 while Leah was doing some last minute revision for her exams.

image

A time to be born and a time to die

A time to be born and a time to die

image

In Bristol Children’s Hospital the cleaning staff always knocked and asked our permission before entering Leah’s room to clean it. If we indicated that it wasn’t a good time they would go away and came back later. If Leah and I were snuggled up together in her hospital bed watching a DVD then the nursing staff often apologized for intruding. Shortly after Leah was admitted to the Bone Marrow Transplant Unit there I was quite taken aback when our very senior haematology consultant even apologized for disturbing us when he came to see Leah!

However once Leah became an adult (i.e. over 16) and was in the adult ICU in Belfast City Hospital, there were times when I felt like the intruder. Now I was the person on the outside knocking and asking permission to enter. I hadn’t changed but the environment had changed, policies and procedures had changed, and my heart was breaking.

In Bristol when Leah was ill I provided all her personal care, showered her, dressed her, changed her bed linen etc. The nurses administered her medication, worked the pumps, nasogastric feeds etc. It never occurred to me that it would be so different when we returned to adult services in N.I..

On Thursday morning 2nd January I could see that Leah’s oxygen levels were dropping and that she was finding it increasingly difficult to breathe. I knew that putting her on a ventilator was the likely next step. I was asked to leave the ICU for doctor’s rounds so I went and had breakfast in the hospital cafe – I liked their warm and frothy cinnamon milk.

Shortly after my return to Leah’s side-room the consultant on duty called me into a separate room. He explained that Leah was critically ill and that they would have to put her on a ventilator to help her breathe. He said that this would entail giving her a general anesthetic & keeping her fully sedated for at least the first 24hrs or maybe more.

He said that because she was so ill she might not even survive the process of being put on the ventilator. He also said that she needed some essential blood products before being ventilated in order to reduce the risk of death and these weren’t available yet so it would be 1-2 hrs before they could go ahead with the procedure. I knew that this unfortunate delay could further increase the threat to her life.

I asked the doctor if I could stay and hold her hand until the general anaesthetic had been administered and she had gone to sleep. He replied that this wasn’t possible as he had equipment to set up and I would be in his way. He continued talking, explaining other aspects of her situation, but I couldn’t concentrate. My stomach was churning. My child was possibly going to die. He was going to put her to sleep and I couldn’t be there to provide reassurance and comfort until the anaesthetic took effect. The last face my child would see would be his face and not mine.

I wanted back in to see Leah, knowing that every moment was precious, but right now my breakfast was threatening to make a reappearance and there was no relative’s toilet in ICU. I excused myself and made my way through the convoluted set of corridors until I reached the public toilets in the hospital foyer.

Thankfully the disabled toilets were available – I didn’t want an audience. I locked the door and gripped the sink as the walls spun round me. I closed my eyes and tried to slow my breathing. This was awful – just awful.

About 20min later I had finally regained my composure and could return to my daughter. I sat and read to her and prayed with her and we listened to her favourite Christian music on her iPad. Due to some difficulty in sourcing the very specific blood products Leah needed, it was a couple of hours before the doctor came and put us out of the room. During this time of waiting, Leah’s oxygen levels continued dropping and the machine that was monitoring her stats was frequently alarming. I wondered at one stage if Leah was going to live long enough to even go on the ventilator.

The Bible says in Ecclesiastes 3:2 “There is a time to be born and a time to die” and thankfully this was not Leah’s time to die.
On Monday 13th January Leah’s oxygen levels were again dropping and she was again finding breathing difficult although this time round she was already on a ventilator and she was awake.

Thankfully a different consultant was on duty – one who didn’t mind me being with my child & giving her comfort while he worked through the crisis. He tried many different approaches to help her with her breathing difficulties until the only option left was to fully anaesthetise her for the last time. While all of this was happening I comforted her by holding her hand and stroking her head. The last face that Leah saw before going to sleep was mine and it was a face so filled with love for my daughter.

Leah remained fully anaesthetised until she was transferred to the N.I. Children’s Hospice on Thursday 16th January to spend her final moments in peace and dignity surrounded by the love of our large extended family and a few very close friends.
It’s so hard to explain how in the midst of the terrible sadness of my daughter’s death I still feel an incredible sense of God’s perfect timing.
Another song that Leah and I loved comes to mind, it’s “Sovereign Over Us” by Aaron Keys
There is strength within the sorrow, There is beauty in our tears
You meet us in our mourning, With a love that casts out fear”