LHS COLOUR RUN 2016

LHS COLOUR RUN 2016

a single act of kindness

I went to get my hair done today and my hairdresser had a copy of the local newspaper ready to hand to me. It contained a full page spread of Years 13 and 14 pupils from Limavady High School participating in a Colour Run in Leah’s memory. I was aware that the Fun Run had taken place but I wasn’t aware that the photos were in the paper. The thoughtfulness of my hairdresser meant a lot – little things mean so much nowadays.

Colour Run

When Leah was alive, the children and I always went together to get our hair done, it wasn’t something I normally did alone. We used to go to a close relative in Donegal who has a salon in her house and we made it into a day out, stopping to shop (and get special treats) along the way. I ended up changing to a local hairdressers after Leah died, because I found it way too emotional to drive all the way to Donegal. However, the first time that I went to this hairdresser, who I had never met before, I dissolved into tears. She wasn’t fazed by my open display of emotion though and she supported me through it, in a kind and understanding way.

Four pupils organised the Colour Run and it took place at the start of their study leave. Leah would have been due to sit her A level exams and leave school this year, so this means that when her friends and classmates were taking part in activities to celebrate the end of their formal education, they found a way to include our daughter. This means so much to me, more than words can ever explain.

The pupils used the Colour Run as an opportunity to raise funds for the N.I. Children’s Hospice, the place where Leah died in peace and dignity, surrounded by love. They raised £1,000. This will bring the total donated in Leah’s memory to the N.I. Children’s Hospice to approximately £8,000. Other than the initial £2,000 donated ‘in lieu of flowers’, most of this money has been raised by staff and present/former pupils of Limavady High School  and Limavady Grammar School.

Northern Ireland Children’s Hospice is the only service of its type within Northern Ireland, caring for children and young people with very complex needs. There are over 1,300 life-limited children and young people and their families living in Northern Ireland, who need the specialist care that only the Children’s Hospice can provide. The Children’s Hospice aims to meet the emotional, social and spiritual needs as well as the physical ones, enabling children and young people to make the most of their lives within the limitations of their illness.

Children's Hospice

Leah would so approve of all of this fundraising for the Children’s Hospice. Leah absolutely loved children. When Leah was of Primary School age, I worked in a setting that provided respite day care for children with life limiting conditions, some of whom also received care from the Children’s Hospice. Leah used to ask me the first names of the little ones who were really unwell, so that she could pray for them. I remember Leah telling me that she prayed every night for Erin, Beth and Ella, amongst others.

Sometimes at work we had ‘family days’ and my children came to these too. I can picture Leah, aged around eight years old, sitting on the couch beside Erin and her mummy. Erin’s little fist was tightly clasped around Leah’s index finger. Leah sat there smiling, very content to at last have met one of these little ones for whom she prayed so faithfully.

Sadly, Erin died on the 16th April 2012, aged 7 years. In May 2014 when our family went to the Garden of Remembrance at the Children’s Hospice to place Leah’s memorial stone, we were accompanied by Erin’s parents. We placed Leah’s stone near Erin and her brother Martin’s memorial stones. I thought about them now in heaven, no longer bound by the confines of illness and disability.

Memory Run

Thank you to all of the staff and pupils of Limavady High School who worked together to make this Colour Run happen. Thank you for remembering our daughter in this way and for raising this money for the Children’s Hospice. Leah would be so proud of you all.

Guest Blog – Forget Me Not

Guest Blog – Forget Me Not

Today was the annual “Forget Me Not Service” of Celebration and Remembrance organised by the N.I. Children’s Hospice.

Last year I wrote a blog post about this service, which you can read here

It’s my 3rd most popular blog post.

This year I will let Georgie’s Mum Oana give you her perspective on the event:

Mama's Haven

This afternoon, we attended the annual Forget Me Notservice organised by the Northern Ireland Children’s Hospice for the first time.

It was as emotional and raw and sweet and consoling as we had expected.

We cried and we remembered our precious children and we smiled at the memories we had made with them in the hospice.

Collective grief. Collective mourning. Collective beauty rising from the ashes of loss…

We heard about love that transcends death and time and makes a way for our emotions to find our lost beloved babes.

The pain of grief was compared to the thorn and the forget me not flower.

Grief is and forever will be for every parent and relative present there a painful reminder of what we have lost and also the ultimate indicator of how much we have loved.

Sorrow and sweetness, amalgamated in one.

Pain and endurance, blended together.

Coming…

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Belfast City Hospital to the Children’s Hospice

Belfast City Hospital to the Children’s Hospice

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I love this photo of Leah.

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.

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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 Sargent Social 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 the N.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.

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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.

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Peace Restored

Peace Restored

In the early hours of Thursday morning the 16th January 2014, I left Leah’s room in ICU and walked back through the winding hospital corridors, to my room in the Cancer Centre, for one last time.

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I knew exactly what lay ahead for us as a family that day.

My entire body felt like lead. Walking along those corridors felt like trying to propel my limbs through deep water.

Leah had been on a ventilator for two weeks and she had been unconscious for the past four days.

I was already missing her terribly. When she was awake on the ventilator, she had found creative ways to communicate.

All of the tests had confirmed that Leah’s body was now “broken beyond repair”.

Leah’s CT scan images had been scrutinised by the top experts in both Belfast City Hospital and Bristol Children’s Hospital.

Two of the consultants in Belfast had sat surfing the internet until midnight, searching for any potential remedy that hadn’t already been tried.

Hundreds of churches and thousands of people, all over the world, had been praying.

Nevertheless, it was now abundantly clear, that Leah’s story was only going to have one ending.

At 8.30am that morning, an emergency ambulance was booked to transfer Leah and myself, along with three ICU staff, to the N.I. Children’s Hospice, where all of our loved ones would be waiting.

There Leah’s life support would be withdrawn and we would say our final goodbyes.

I packed my bags and sat on my bed.

I felt numb, empty, desolate.

I lifted my iPad and clicked on Facebook.

There I discovered that Leah’s friend Matthew had put together a beautiful YouTube video, of various photos of  Leah taken over the past year, interspersed with inspirational messages and backed with the song “It is well” by Hillsong.

I could scarcely breathe as I watched and listened:

“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 hope
Blessed rest of my soul!

It is well with my soul
It is well
It is well with my soul

You are the Rock
On which I stand
By Your grace it is well
My hope is sure
In Christ my savior
It is well with my soul”

A peace flooded through me.

I knew without a shadow of a doubt, that it was well with my daughter’s soul.

I slept for a few hours then.

In the morning I left that room for the last time.

Normally the staff on that ward in the Cancer Centre were friendly and welcoming to me, but they must have been very busy, for as I slipped in and out that morning, nobody spoke to me or seemed to notice me.

I felt alone and invisible.

At 7.20am as I stepped into an empty lift to head down to ICU, feeling very alone and vulnerable, I heard a text coming in on my phone.

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It was a work colleague from a previous job – her act of kindness in texting me at that exact moment was precisely what I needed.

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The remainder of that day is described in my blog post How Could We Ever Have Let Her Die In An Unplanned Kind Of A Way

This is the YouTube video that I watched that night:

 

Shopping has become so emotional

Shopping has become so emotional

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This coming Sunday Horace, Rachel, Miriam and I are going to the N.I. Children’s Hospice for a pre-Christmas bereavement support day. It will be our first time to step inside the Children’s Hospice since Leah died there. The memorial service that we attended earlier this year did not actually take place in the Children’s Hospice, it was in a venue nearby.

The care provided by the Children’s Hospice does not stop once a child or young person dies. Their wonderful outreach nurse has visited us on a regular basis this past year and I’ve had several tearful telephone conversations with their lovely Social Worker.

She phoned me today and when she realised that I was in Tesco’s she was going to phone back. However I asked her to keep talking, as I was already in tears and I had been struggling to make it to the checkout with my groceries. By the time we had finished talking I was more composed and able to go and pay for my groceries.

I find shopping one of the single most difficult tasks since Leah died. Leah adored shopping and loved accompanying me on shopping trips. She regularly helped me choose my clothes. When Leah became ill and couldn’t come clothes shopping with me I took photos of the items that I was thinking of buying and she told me which items she thought were the nicest.

Grocery shopping is the worst – I usually end up in tears at some point and some weeks I don’t even manage to get groceries at all. It’s so hard to remember NOT to buy Leah’s favourite foods.

I love a bargain and the promotional displays still catch me off guard. I will reach for an item on special offer and put it in my trolley, only to realise with a jolt that the reason I am buying it is because Leah loved it. Then I rack my brain trying to remember if somebody else in the house likes the same item. Then slowly and sadly I replace it on the shelf and try to continue shopping, but it’s hard to read your shopping list when your vision is blurred with tears.

This time of year of course is harder still, with one less child to buy Christmas presents for. Leah’s birthday is on New Year’s Eve too so I have to keep reminding myself NOT to shop for her birthday either.

I used to say that Leah had a bit of “middle child syndrome” and that she needed to get twice as much as the others just to believe that she was getting the same amount. So if they had two birthday parties then she somehow got three parties. If they had two birthday cakes then she somehow or other got three – not all on the same day, of course.

We always have a big family get together on New Year’s Day, so every year we took a birthday cake to that and when Leah was younger she thought it was a big birthday party just for her. Leah felt a bit “deprived” having her birthday so close to Christmas so she used to get some extra wee treats to make it up to her.

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Maybe you think that doing all my shopping online would be easier – for some people that would be a solution. Not for me, because with God’s strength I want to face the pain and work my way through it, not run from it.

No matter how hard it is to keep going, I believe that God is with me and that He will bring me through.

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I thought she was crazy to even ask the consultant to let her go

I thought she was crazy to even ask the consultant to let her go

This is the emblem of the N.I. Children’s Hospice. Last night was Leah’s High School Formal and every guest was given one of these badges to wear in remembrance of Leah.

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Leah had looked forward so much to going to her own school formal and was very excited about the fact that it was on St Valentine’s Day. The design of the badge seems so fitting for the occasion.

The formal Leah went to in November was her boyfriend’s formal. I thought Leah was crazy to even ask the consultant to let her go. We were just back from Bristol and her immunity was very low. Leah had spent months in isolation.

The haematology consultant looked into Leah’s pleading big brown eyes which were filled with tears. I reckon his head said no but his heart said yes – so yes it was.

Being immune suppressed meant that Leah couldn’t go into crowded places to look for a dress but we found some shops that were very quiet during late night opening. The young shop assistant who helped us choose Leah’s dress was very understanding – Leah had a Hickman central line in place and needed a dress that covered this.

Leah’s toe nails and finger nails had been badly affected by her illness and chemotherapy – she had developed Beau’s lines – so we needed to find a foot care specialist and a beautician who could attend to these.

Leah had never worn her wig (supplied by the Little Princess Trust) so we also needed to find someone local who could style this for her nearer the time. There seemed to be so many challenges in getting Cinderella ready for the ball but thankfully God blessed us with friends with talents and with good contacts.

By the week of the formal Leah’s toe nails were beautifully manicured and they remained so till the day she died.

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Leah wore false finger nails on the night.

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The morning of the formal Leah had a hair appointment at Roco in Derry where we were taken to the VIP suite and served hot chocolate with marshmallows – a treat Leah loved. Ronan, the proprietor, styled her hair (wig) and treated her like a princess.

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Next it was lunch, then off to the beauticians for Leah to get her makeup done. The time just seemed to fly – as soon as we got home it was time to help Leah get dressed. Then Nic was arriving and there was flowers and photos, laughter and excitement.

Our daughter was like any other young girl going to her first formal, excited and beautiful. I was like any other proud mammy, taking lots of photos and choosing the best ones to send to friends and family.

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The next day was Friday. Leah and I spent every Friday in the Bridgewater Suite of Belfast City Hospital. Bridgewater Suite is where haematology and oncology patients go.

As we arrived for our appointment that day my heart felt so heavy. I realized with crushing sadness that the bit where Leah was “just like any other teenage girl” was gone again. We were back to reality – our reality – a reality where my daughter was very sick.

I thank God for a doctor who made a decision from his heart and not his head and gave our daughter the opportunity to be a princess for a day.

How could we ever have let her die in an “unplanned” kind of a way

How could we ever have let her die in an “unplanned” kind of a way

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.

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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’ and confirmed 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 1 Corinthians 14:40Let 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“.

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When we arrived at the hospice there was approximately 35 family and very close friends of all ages waiting to welcome us.

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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.

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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.