Having cried most of this past weekend I went to New Horizon last night and I felt such a peace and joy in my heart, mainly for two reasons:
1) I thought of the mighty work that God did in Leah’s heart at New Horizon in 2012 to prepare her and strengthen her for what lay ahead and I was comforted that God sees the bigger picture. One of the things that Leah said when she was diagnosed was – “we have to see the bigger picture“! Here is a text that she sent me from New Horizon in 2012 – Livewire was the Youth Programme that she attended every day:
2) I reflected on how ill Leah was this time last year – she couldn’t smile, speak or even swallow her own saliva and had many other chemo side effects too.
I felt at peace knowing that never again will my child suffer in this way, never again can chemotherapy poison her body and never again will I watch her suffer so horribly.
Leah has received the ultimate healing and is rejoicing with her Saviour in heaven.
I know my contentment won’t last, because another wave of grief will soon crash over me, but last night it almost felt like a little glimpse of heaven.
Then in the Coffee Bar afterwards I met Dr H and it was smiles and hugs all round. Dr H is the specialist in paediatric palliative care who, on Tuesday 14th January 2014, dropped everything to drive from Limavady to Belfast City Hospital to persuade the staff there that it was possible for Leah to be transferred out of ICU to the NI Children’s Hospice for her end of life care – to Dr H I will be forever grateful. I write about Leah’s end of life care here.
“When peace like a river
Attendeth my way
When sorrows like sea billows roll
Whatever my lot
You have taught me to say
It is well
It is well with my soul
But Lord it’s for Thee
For Thy coming we wait
The sky not the grave is our goal
Oh trump of the angel!
Oh voice of the Lord!
Blessed rest of my soul!”
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.
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.
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
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
Today I was in town and found myself with a bit of unexpected spare time, so on a sudden impulse I headed into the Health Center and climbed the two sets of stairs to my work place – somewhere that I hadn’t visited since July ’13 before going to Bristol for Leah’s bone marrow transplant.
There wasn’t many in the office but it was absolutely lovely to see and chat to some of my work colleagues. It reminded me of a world beyond my grief.
Something else very nice happened while I was in at work – I unexpectedly got to see and hug Dr H, the specialist in paediatric palliative care who enabled Leah’s transfer from ICU to the N.I. Children’s Hospice.
On Monday 13th January 2014 I finally accepted that Leah was not getting the miracle of healing that so very many of us were hoping and praying for.
I asked the staff in Belfast City Hospital what our options were for Leah’s end of life care – apparently we didn’t have any options, she would die in ICU.
I said that I didn’t want her dying in a critical care environment and that I wanted to take her home or to the N.I. Children’s Hospice but I was told that neither was possible.
I was distraught on two counts – one because my child was dying and two because I felt that I was being denied the option of planning a peaceful and dignified death for my child, surrounded by those who loved her.
As a student nurse in the early ’80s I formed quite strong views in favour of hospice care. I also at that time read TO LIVE UNTIL WE SAY GOOD BYE by Elizabeth Kubler Ross. The writings of Elizabeth Kubler Ross introduced me to the concept of ‘end of life care’ andconfirmed my thinking that end of life care should, wherever possible, be planned and dignified, both for the benefit of the person dying and also for those who will be left to grieve.
On Tuesday 14th January, through my own personal work contacts I was put in touch with Dr H. She immediately offered to drive the 140 mile round trip to BCH to convince the staff there that we as a family did have options, that it was indeed possible and safe for Leah to be transferred to the N.I. Children’s Hospice when the time was right.
Dr H knew how this could be arranged and she had all the names and phone numbers of those who needed to be contacted so that it could be arranged.
Once Dr H had outlined to the staff at BCH what was possible, all the pieces of the jigsaw started falling into place. From that moment on, the staff in BCH did everything they could to support our choice and to make it happen.
The particular doctor from the Royal who normally did transfers to the hospice was not available on Thursday 16th January when we needed him, but the lovely ICU doctor from Cork volunteered to give up his morning off to come with us.
One of our favourite nurses said she would come too. By Thursday morning Leah was too ill to survive being changed over to the portable ventilator, so the Cork Dr calmly said that we would just bring the big ICU ventilator with us – it was apparently unheard of for a patient to leave ICU on anything other than a portable ventilator.
When the emergency ambulance arrived to take us to the Hospice they could see straight away that Leah and all of her medical equipment wouldn’t fit in their ambulance – without any fuss they ordered a bigger patient transport ambulance to come.
Leah, the medical staff and myself all traveled in the transport ambulance while the emergency ambulance blue-lighted us across Belfast.
Normally during the day in her room in ICU Leah’s Spotify playlist played continuously on her iPad. At night I asked the nurses to keep the music off to help Leah differentiate between day and night, as that distinction isn’t obvious in an ICU environment.
On her last night in ICU Leah was being looked after by a lovely nurse who belonged to a church in Ballymena. I asked her to play Leah’s Christian music during the night because this was to be her last night on earth. I was in and out during the night but I did manage to sleep a couple of hours in my room in the Cancer Centre.
When I returned in the early morning the nurse told me that she had picked out the best songs for Leah to listen to and then added “I sang to her too” – my heart just melted when she told me this.
Then I turned over Leah’s own desk calendar onto that days date and read the verse for that day which was 1Corinthians 14:40 “Let all things be done decently and in order“. Leah was very much a “planner” – she loved to be organised and wrote lists for everything – how could we ever have let her die in an “unplanned” kind of a way?
Through my tears I uttered a quiet “thank you Lord, I truly know that Your hand is upon us this day“.
When we arrived at the hospice there was approximately 35 family and very close friends of all ages waiting to welcome us.
The medical staff settled Leah into her very pretty room with her name on the door. Then friends and family had time to say goodbye. The Hospice staff introduced themselves to us, then remained discretely in the background, always ready when we needed them.
It was like a big family get together albeit a very sad one. Leah absolutely loved big family get togethers.
Children who didn’t want to be in Leah’s room all the time, had access to a games room, hospice staff had an oversight to all that was going on.
After Leah had died in a peaceful and dignified manner, the hospice staff provided lunch for everyone – there was no need for anyone to rush away – everyone was able to deal with the situation at their own pace and the hospice staff were always on hand to provide support when needed.
We had prayed for a miracle of healing – we didn’t get that miracle – but the beautiful way in which Leah was able to die, was in itself a miracle and for that – through tears of grief and sadness – I am very thankful.
Apologies to those of you who have been waiting anxiously for an update – it’s been a difficult one to compose.
Leah’s medical condition has continued to deteriorate.
Today has been spent in discussions with the ICU Consultants, our haematologist here, a paediatric palliative care specialist, our consultant in Bristol and other relevant professionals.
At present it looks likely that end of life care for Leah will be put in place tomorrow Thursday.
So very many songs have been meaningful to Leah and I on this journey – here is another one: Christ alone, Cornerstone
Weak made strong, in the Savior’s love
Through the storm
He is Lord, Lord of All
When darkness seems to hide His face
I rest on His unchanging grace
In every high and stormy gale
My anchor holds within the veil