Christmas Eve – this time two years ago the rest of the family moved in to our new house. All six of us slept together under the one roof for the first time in six months. I went to bed feeling so happy, so content, so ‘full’. Within four days the bells of Christmas had been replaced by the ‘bells’ of the monitors to which Leah was attached in the Intensive Care Unit where she had been admitted as a result of respiratory failure.
Every time Leah’s blood oxygen levels dipped, the monitors chimed and my heartbreak intensified. For the first five nights I slept in a chair beside Leah. During one of these nights there was a medical crisis and the monitors alarmed almost continuously. In the morning the staff looked at me in amazement and asked me how I had slept through the whole commotion. I shrugged my shoulders and gave a vague answer. In actual fact, I had been well aware of what was happening but I had kept my eyes closed and had held my daughter’s hand (whenever I wasn’t in the way) while praying silently. I was worried that if the staff knew that I was awake that they would put me out of the room and then I wouldn’t be there to comfort Leah. Many days as I sat quietly holding Leah’s hand, with her favourite music playing softly in the background, the chimes of the monitors would intrude unpleasantly on our thoughts – reminding us of what we didn’t want to be reminded about – that Leah’s life hung in the balance. Finally on the 16th January 2014, when Leah had been transferred to the Children’s Hospice for her end of life care, a monitor started to sound an alarm as the life seeped slowly from Leah’s body – swiftly and silently the doctor pressed the mute button on all of the alarms. We didn’t need them now, as sadly for us, the time had come to let Leah go peacefully into the waiting arms of her loving Heavenly Father.
Now I live and ‘celebrate’ Christmas in a dichotomy – one part of me is overwhelmed with the sadness of Leah not being here, yet the other part of me celebrates the birth of the Christ Child and the many blessings with which God has enriched my life.
Each one of our four children is a blessing in my life. My friends and my family who surround me with love and comfort are a blessing. Having a job that I love and work colleagues whose company I enjoy is a great blessing. I have a beautiful house which is a blessing.
Let the words of Chris De Burgh be my Christmas greetings to you, my faithful readers:
The Bells Of Christmas
If you know someone who is lonely this Christmas, Reach out a hand and open the door, Bring them inside in the spirit of Christmas And show what lies in store;
If you know someone who’s forgotten that Christmas, Will always shine in the eyes of a child, Open their hearts to the memories of Christmas And take them back in time;
So have a very Merry Christmas everyone, Celebrate the coming of the newborn son, Everywhere this happy day we have begun, To ring the bells of Christmas;
Let the light that shines with the wonders of Christmas, Fill every heart all over the world, Let us believe in the spirit of Christmas And dream of peace on earth;
So have a very Merry Christmas everyone, Celebrate the coming of the newborn son, Everywhere this happy day we have begun, To ring the bells of Christmas;
Have a very Merry Christmas everyone, (Ring the bells) Celebrate the coming of the newborn son, (Merry Christmas) Everywhere this happy day we have begun, (Ring the bells) To ring the bells of Christmas, (Merry Christmas) Ring the bells, ring the bells!
Sometimes when I look back over everything that I’ve written in this blog about the care that Leah and I received during her illness, I worry that I haven’t said enough about all of the good care that we experienced.
I worry especially that I haven’t said enough regarding the many excellent staff that looked after us in Belfast City Hospital.
There are a few possible reasons for this:
Our first impressions of the City Hospital were very negative and I think that this in some ways coloured my subsequent perceptions.
Secondly, I always struggled with what I considered to be the lack of age appropriate care in an age appropriate environment in Belfast, for our fifteen year old daughter.
Thirdly, my emotions were in tatters during the two and a half weeks that Leah was dying in ICU in the City Hospital and that obviously coloured the lens through which I interpreted everything.
When Leah was in Bristol Children’s Hospital and developed complications post transplant, she was prescribed pain relief in the form of tramadol and oramorph – a derivative of morphine. I was slightly alarmed at this and had visions of my daughter becoming a junkie!
The doctor reassured me however and explained that a bone marrow transplant had very severe effects on the body and initially all of her pain receptors would be in a state of heightened awareness, so that any pain that she experienced would feel quite severe and needed to be treated as such.
This actually made sense to me. I noticed that Leah had also become quite “sound sensitive” and couldn’t cope with any noise – even a dripping tap drove her crazy.
Well, whenever Leah was dying in ICU, I reflected back on this and compared it to how I was now feeling emotionally.
I felt as if all of my emotional pain receptors were in a state of heightened awareness.
During Leah’s final weeks, there were three things that I desperately wanted from the hospital staff:
1) To be allowed to remain at my ill daughter’s bedside continuously. 2) To be kept fully informed of her medical condition and their treatment decisions. 3) For any staff that came in contact with me to show kindness and an awareness of my needs as Leah’s Mummy.
When what was happening to me did not meet the above criteria, my emotional pain transmitters started firing and at times this felt unbearably painful.
However, when all of the above criteria were being met, I felt calmer and I found it much easier to cope.
I have to say, that most of the staff were very kind.
Those that got it right for us got it very right.
We had got off to a shaky start (at the time of diagnosis) with our haematology consultant, but Leah & I quickly put that behind us when we discovered how kind and caring he really was and is.
Our TYA (Teenage and Young Adult )Cancer Nurse Specialist and our Clic SargentSocial Worker were there for us every step of the way and they were an enormous source of support to both of us. I don’t know how we would ever have managed without the two of them.
Most of the nurses were incredibly kind and caring, I wish that I could name them all and thank them individually.
There was two women who regularly cleaned the hospital during the night. They always had a smile and a kind word for me – they will never know how much this helped.
Sometimes, when a doctor wanted to talk to me, I was taken into the ICU office and two or three other members of staff piled in and watched while the doctor was talking to me. I detested this audience.
I was never told good news, so here I was, being told things about my daughter’s medical condition and life expectancy, that no parent ever wants to hear, struggling to maintain my dignity, while all of these pairs of eyes were fixed on me.
I would like to have been asked who I wanted to accompany me to meet with the doctor. I would most likely have chosen my TYA cancer nurse specialist, if she was available.
On another occasion, one of our favourite consultants was on duty, a young man who never failed to treat Leah and I with respect and compassion. When he wanted to speak to me, he “smuggled” me out of ICU and down a corridor and through another unit and into what looked like a store cupboard, far away from inquisitive eyes.
There, he gently, falteringly, explained to me that he really didn’t think that Leah was going to survive. Oh how I appreciated the respect that this doctor showed to me and his compassion. No, I didn’t want to hear what he was telling me, but it was so much easier to hear, when the information was delivered in a context that showed an understanding of my needs.
The day that Leah was being admitted to ICU it was the lovely consultant from Cork who assessed her, admitted her to ICU, then broke the news to me that my daughter was possibly going to die.
On Wednesday morning 15th January ’14 when we were in an end of life situation and Leah’s medical condition was rapidly deteriorating, the consultant from Cork, who always treated Leah and I with such dignity and respect, was mercifully once again on duty.
This incredibly compassionate man uttered the words that I will never forget “I’m off tomorrow morning – I will use this time to transfer your daughter to theN.I. Children’s Hospice.”
48hrs prior to this I had been told that under no circumstances could our daughter be transferred to the Children’s Hospice for her end of life care, as she was on a ventilator and too ill to be moved. I had found this very distressing as, if our daughter was going to die, we did not want her to die in critical care or even in an acute hospital setting.
When I was pregnant I was encouraged to write a “birth plan“. www.nhs.co.uk states “Use your birth plan as an opportunity to explain the things that really matter to you. However, remember to be flexible and recognise that things don’t always go to plan.”
Well, when Leah was dying I wanted a “death plan” – it was going to be my last act of love for my dying child. Of course, the “politically correct” term for this is an “end of life care plan”.
We have a large extended family who all needed the opportunity to say goodbye to Leah and she herself just loved big family get-togethers. No ICU anywhere could possibly have accommodated all of us. Least of all the ICU in Belfast City Hospital which does not even have a ‘relatives room‘ on site.
The Children’s Hospice was the only place that could accommodate our family’s needs and provide the type of end of life care that I wanted for Leah.
No, I didn’t want our daughter to die, of course I didn’t, but I thank God for all of the kindnesses that we experienced through it all, for the many people who touched our hearts along the way.
Leah was looked after by eight different consultants during her time in ICU, they all provided excellent medical care. They all cared about my daughter and they did everything humanly possible to save her life.
However, for me it was very special that the same kind, caring consultant from Cork (my hometown) who took Leah into ICU on the 27th December 2013, was the very same consultant who took her out of it and brought her to the N.I. Children’s Hospice on the 16th January 2014.
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
(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)
On the 4th March 1969 Horace’s older brother David had his 15th birthday and became seriously unwell. This resulted in him having an appendicectomy and being diagnosed with a “progressive malignant tumour“. David was subsequently admitted to St Luke’s Hospital in Dublin and prayer was going up for his healing all over the world. Someone said “heaven is stormed with prayer”. Horace’s mother Charlotte stayed up in Dublin to be with David.
On the 17th July 1969 Horace’s mum read to David from Psalm 65, they prayed together and then he kissed her goodnight. At 5am the next morning David went to be with Jesus.
Charlotte said that “although grief-stricken, a great peace passed over me, the Peace that passeth all understanding – God had taken him home and now he was free from all his pain.”
Two years later Charlotte developed breast cancer. She went to be with Jesus on the 16th December 1982. Thankfully Charlotte wrote about some of these experiences in a little booklet that she called “Stepping Stones“. I have read and reread this booklet many times over the years. Leah also found it comforting to read. During Leah’s illness I took to carrying a copy in my handbag.
On Saturday 11th January ’14, for the first time since Leah’s admission to ICU the doctor told me that Leah’s chest X-ray showed a slight improvement. They had been telling me all along that Leah was unlikely to recover, but there were thousands of people all over the world praying for healing for Leah and I was hopeful. When I heard this positive news about Leah’s chest X-ray I was so sure that this was the miracle starting to happen and I was so happy – our little girl was getting better – she was going to live.
The next day when I went in to see Leah her condition had worsened and my heart sank. That evening I sat by Leah’s bedside, held her hand and reread Charlotte’s wee book. I read how heaven was stormed with prayer for healing for Horace’s brother David, but yet God chose to take him. I read these words written by Horace’s mother “This has cost me a lot to write but I believe it is what my Father wants me to do, hoping that it will help someone. By the way those four and a half months taught me many things. David and I grew very dear to each other. God is not only our Father, He is also a wonderful teacher and trusting in Him all must be well.”
There as I held Leah’s hand and listened to the swish of the ventilator pushing air into her lungs I silently prayed and asked God an almost rhetorical question “Lord, you aren’t going to heal Leah are you?”
The next day the deterioration in Leah’s medical condition continued. At midday Leah had to be anaesthetised to conserve her oxygen levels. My sister in law Hannah unexpectedly paid me a visit. As we sat talking outside ICU Hannah looked me in the eye and said “What’s your gut feeling about Leah?” In that moment I had to face the truth. I whispered the words “I think Leah’s going to die.” Hannah put her arms around me and prayed with me.
This wasn’t me admitting defeat or giving up – this was a moment of acceptance. This was the moment when I moved from giving Leah the best possible quality of life, to being able to ensure that Leah had the best possible end of life care. I thank God for everyone He sent to help us along the way.
When Leah was diagnosed she said “God has a plan for my life” and “we have to see the bigger picture” – I think that “bigger picture” was bigger than even she could ever have realised.
Tuesday morning 14th January’14 found me sitting in my lovely room in the Cancer Centre at Belfast City Hospital.
Leah was going for a CT scan of her lungs.
The policies of the ICU did not permit relatives to accompany patients for these procedures.
My TYA (teenage & young adult) oncology nurse specialist came to see me in my room.
She said that she & my TYA Social Worker were concerned about some of the issues I was experiencing in ICU and the impact of these on my stress levels.
She said that she would speak to the nurse in charge on my behalf and wanted to know which issues I wanted addressed.
I explained that most of the nurses were brilliant and some of the doctors, especially the younger ones, were good at communicating with me – the problem was that how I fared on any given day depended on who was on duty.
I said that there was really only two issues that I wanted addressed.
One was the fact that when certain consultants were in charge I had to beg for information.
Whenever I was asked to leave ICU during Doctors rounds I would say to the nurse looking after Leah “Please ask the consultant to give me an update when he has finished his rounds.”
On more than one occasion this request elicited the following reply from a nurse “It is not the norm in this unit for doctors to speak to relatives on a daily basis.”
I told my TYA nurse that I NEVER wanted to hear that phrase again – the patient in the bed was 16 years old, she was just a child, I was not just a relative I was her mummy, she was dying and I didn’t care what the norm was in that unit – I wanted the opportunity to discuss my daughter’s medical condition with the doctor looking after her, on a daily basis.
The other issue I wanted raised was the amount of time I spent sitting outside ICU in the corridor, separated from my child.
I accepted that the policies of the unit meant that I was asked to leave for all sorts of reasons.
Most of the nurses kept this time as short as possible, but sometimes it seemed that the amount of time I was left sitting out in the corridor varied according to who was on duty.
My time with my critically ill child was so precious to me and I felt actual physical pain in my heart when forcibly separated from her.
I asked my TYA nurse to ask the staff to please keep separations as short as possible.
My TYA nurse was very understanding and went and spoke to the nurse in charge in ICU.
The particular nurse in charge that day was one of the kindest, gentlest people you could ever wish to meet and she was maybe a little taken aback to hear that a small minority of staff treated me very differently to how she treated me.
However, she took on board what was said.
Leah’s CT scan that day showed serious deterioration and we very quickly found ourselves discussing end of life plans, so the goal posts moved quite dramatically.
However, it was so important for me to know that I had professionals like my TYA Oncology Nurse Specialist & Clic Sargent SW who would listen to me, support me and advocate on my behalf.
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.
Many people have thanked me for writing so faithfully on our “Journey” page on Facebook and have asked me “How did you do it?”.
For Leah and I, it was part of our coping strategy.
When Leah was first diagnosed and she found out that she would be going to Bristol for her treatment, I suggested to her that there may be times that she would be very sick and wouldn’t be able to keep her friends updated and that we needed some kind of private space that either of us could write on to keep people in the loop.
Leah and I chatted about this for a bit and then she set up the “Journey” page.
We quickly discovered that the communication was two-way as people posted encouraging comments, song suggestions, prayers and/or verses of Scripture for us.
The “Journey” page became a real life-line for us during some of our more difficult times in Bristol.
When Leah was in ICU in Belfast the rules of the unit allowed me to use my iPad but not my mobile phone while sitting with her, so the “Journey” page became a vital part of my support system.
One of the challenges when writing updates for the “Journey” page when Leah was in ICU, was to give enough information that people could pray intelligently for us but not to give so much information that I took away hope and generated panic.
While Leah was in ICU, I was told many times by the doctors that she was unlikely to recover, but I was hoping and praying for a miracle.
On Saturday 11th January 2014, when the Dr told me that Leah’s X-Ray showed a slight improvement (for the first time since admission) I thought that this was the miracle coming through and I was very excited.
When I arrived at ICU on Sunday morning the 12th January and Leah’s condition had deteriorated significantly, I started to realise “We aren’t getting this miracle” and my heart felt very heavy.
By Monday 13th January, Leah’s medical condition had deteriorated a lot more and I thought “My child is dying and I don’t want her to die in a critical care environment.”
I asked the staff about my options for end of life care for Leah, but apparently there weren’t any options – never before had any patient on a ventilator been transferred out of that ICU to spend their final hours elsewhere.
Thankfully God heard the cry of my heart and I was contacted by a good friend/work colleague from home, who put me in touch with an excellent Dr in the WHSCT who specialises in Paediatric Palliative Care.
She dropped everything and drove from Limavady to Belfast to discuss end of life options with me and the staff in ICU, at very short notice.
I said that obviously I didn’t want my daughter to die, but if death was inevitable, I wanted Leah to die in peace and dignity, surrounded by our large extended family. Leah was happiest when surrounded by the people she loved.
The lovely Dr from the WHSCT very graciously explained to the staff in the ICU how it was possible for Leah to be transferred to the Children’s Hospice for her final hours and she gave them the necessary names and contact details.
By Wednesday 15th Jan, Leah was very weak. The Dr on duty that day – it was the nice Cork Dr – advised that our end of life care plan needed to be put in place for Thursday 16th Jan, although he wasn’t convinced that Leah would live that long or that she would survive the journey to the Hospice.
I asked family and close friends to pray that it would be possible for our end of life care plans to be carried out, both for Leah’s sake and also for the benefit of those who loved her and needed an opportunity to say goodbye. Leah had been unconscious since Monday and she was in no distress.
The lovely Cork Dr and a lovely nurse came with Leah and I in an ambulance to the Children’s Hospice on Thursday morning 16th January 2014.
Some of Leah’s “surplus” tubes were removed before she left ICU.
The Children’s Hospice was such a lovely calm, friendly, welcoming place. Leah was made comfortable in a pretty bedroom with a sign on the door that said “Leah’s Room“.
We were all able to spend some time with Leah and with each other, before it was time for Leah’s life support to be switched off.
The Spotify playlist on Leah’s iPAD was playing her Christian music softly in the background. Various people who loved Leah were holding her hands, stroking her arms, and stroking her head.
Leah was unconscious and peaceful.
The end of life process lasted about 40 minutes and different people noticed different songs that played during this time.
The song that stood out for me was “A Beautiful Life” by Mikeschair.
“A beautiful life is unfolding before my eyes
Just like the sun will rise to fill the empty sky, so shine
Oh, your beautiful, oh, your beautiful, oh, your beautiful life”
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
Leah had her CT scan of her lungs this morning and it showed a significant deterioration since the CT scan done just over two weeks ago when she was already very ill.
The doctors are not hopeful that she will recover.
It is good to continue to hope and pray for a miracle.
However as Leah’s Mummy I must consider all possible options.
Today I have been talking to some professional people who can give advice and guidance regarding end of life care should this be what lies ahead for us.
In an end of life situation ideally I wouldn’t want things to “just happen” – I would like there to be a plan so that there can be dignity for both Leah and for our extended family.
If we don’t need any of these plans it will be wonderful.
In the meantime Leah will be kept fully sedated because the mode of ventilation she currently requires would be uncomfortable for her if she was awake.
The Drs have no new treatment options and will continue with her current treatment plan unless or until she recovers or deteriorates further.
“God is in every tomorrow,
Therefore I live for today,
Certain of finding at sunrise,
Guidance and strength for the way;
Power for each moment of weakness,
Hope for each moment of pain,
Comfort for every sorrow,
Sunshine and joy after rain.”
by 
My Journey: 