Lessons from a Sticky Plaster

Lessons from a Sticky Plaster

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Today I opened one of the notebooks that I used for note taking during Leah’s many hospital appointments in 2013. Immediately my eyes were drawn to a sticky plaster carefully folded into a heart shape.

I instantly remembered where it came from – it was Friday 14th June 2013 and the five of us (our eldest was away working in the USA) were on our first visit to Bristol Children’s Hospital. As on every one of Leah’s hospital visits, she had blood taken that day. This was the first time that Leah had genetic testing done and the subsequent results were very significant. We also gave our consent that day for some of Leah’s blood to be frozen and kept at the hospital for future research.

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After the nurse on Oncology Day Beds had taken blood from Leah she placed this cute sticky plaster with animals on Leah’s arm. Leah loved animals and she was very keen to visit Bristol Zoo or even make a return visit to Belfast Zoo – an ambition that was never realised sadly. Leah’s consultant in Belfast City Hospital informed her in mid December 2013 that her immune system could now cope with a trip to the Zoo. However with all the busyness of Christmas we did not have time to plan this before she died four weeks later – we always thought that there would be more time.

A few hours later this little plaster came off and Leah folded it neatly into a heart shape and presented it to me with one of her little smiles. I tucked it inside my notebook and there it sat until now. Another of Leah’s little ‘love notes’!

This also reminds me of God’s many ‘love notes’ to us. One of our favourite passages of Scripture to read during Leah’s illness was the last part of Romans Chapter 8. Leah and I drew great comfort from the fact that neither disease, nor chemotherapy, nor even death itself, would ever, could ever, separate us from the love of God that is ours in Christ Jesus.

Romans 8:38-39
“And I am convinced that nothing can ever separate us from God’s love. Neither death nor life, neither angels nor demons, neither our fears for today nor our worries about tomorrow—not even the powers of hell can separate us from God’s love. No power in the sky above or in the earth below—indeed, nothing in all creation will ever be able to separate us from the love of God that is revealed in Christ Jesus our Lord.”

Child Cancer Awareness Month 2016

Child Cancer Awareness Month 2016

Be Aware

I have been acutely aware since waking up this morning that today is the 1st of September – the start of Childhood Cancer Awareness Month. I wish that I wasn’t Child Cancer Aware – not to the extent that I am now anyway. I wish that I could just roll back my life to a time four years ago when (despite my nursing qualifications) my knowledge of childhood cancer was almost non existent. Yes of course it’s important to be Childhood Cancer Aware but I wish that this was mere ‘head knowledge’ and not ‘heart knowledge’.

My ‘awareness’ of childhood cancer causes me to feel deep sadness and fight back tears every. single. day. The least wee thing can trigger this – a product display in the grocery store, a casual comment from a friend or work colleague, a memory that suddenly pops into my head.

This time three years ago Leah and I were in Bristol Children’s Hospital. The previous week Leah had been transferred out of her isolation cubicle on the Bone Marrow Transplant Unit to a beautiful ensuite room on their amazing purpose built Adolescent Unit. We had also been told the most fantastic news ever, which was that Leah’s bone marrow transplant had been successful and that she was fully engrafted. We were ecstatic. It was now going to be onwards and upwards, or so we thought.

Leah was allowed off the ward for short periods of time, so on the 2nd of September we very cheekily had a sneaky trip to the local Costa – this was strictly forbidden as Leah’s immune system was still very fragile.

Leah at Costa

Sadly our euphoria was short lived, as over the following weeks and months, side effect after side effect from the harsh treatments that she had experienced began to ravage Leah’s body, until finally – five months post transplant – these side effects also claimed her life. The cure proved as destructive as the disease.

Devastatingly, this is the reality of childhood cancer.

 

The 2014 Calendar

The 2014 Calendar

In October 2013 when Leah and I were packing to leave Bristol, one of the families that we had become close to gifted us a 2014 calendar containing beautiful colour pictures of Bristol. During our fourteen weeks there, I had fallen in love with Bristol – well, as much of it as I had seen anyway. I really appreciated this thoughtful gift, as well as their friendship.

Bristol Calendar

A place of honour was found on the walls of our new home for this picturesque calendar. However, January 2014, the first month in that calendar, sadly brought with it the death of our beautiful daughter Leah.

Leah in a hat 2012

We never discovered what beautiful scenes of Bristol were displayed alongside the other months, because to this day that calendar remains open on January 2014, still hanging on our wall, frozen in time.

January 2014

To my knowledge this was not a conscious decision on anybody’s part, nor do I recall us ever discussing this as a family. It just is. Other calendars get turned over monthly and removed at the end of the year. When the time is right this calendar will come down too, just not yet.

Next month I will fly to Bristol with the one who hasn’t returned there since donating his bone marrow in the hope of saving his sister’s life.

Leahs study area
Leah’s study area

We are going there for the University  Open Day as he has expressed an interest in studying there next year. I’m quite familiar with the university quarter of Bristol: Sam’s House where Leah and I stayed when she wasn’t in hospital is adjacent to some of the university buildings. While Leah was busy studying for her GCSE’s at the study area that she had set up in our bedroom, I used to occupy myself with going for walks around the local area.

Although my children are grieving, their lives are going on and moving forward and that is just how it should be. Leah would never have wanted it any other way. Our eldest moved to live and work in England last week. We miss her but I’m just so proud of her. The day that she left N. Ireland I received lots of supportive messages from friends, which I really appreciated. One of the most encouraging messages that I received was this one:

Well done that, in spite of all your family have been through, you have raised a girl with an adventurous, independent spirit which you are nurturing. There will always be a part of her that will never leave home. Bon voyage.

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Operation Beautiful~One Note At A Time

Operation Beautiful~One Note At A Time

Tomorrow I’m leading Children’s Church – something I seldom volunteer for since Leah died. This morning I was scouring the house for our  Veggietales  DVD collection to use one of them in Children’s Church, when it occurred to me that some of them might be in Leah’s bedroom. As I was searching through Leah’s possessions, I found myself lingering, reminiscing, and grieving.

Sometimes people ask me whether it gets easier as time goes on? I’m not sure if the pain of child loss ever gets any less. What has changed as time goes on is my ability to deal with the pain. I’m gradually learning some coping strategies that enable me to live with the pain of child loss, so that I can, by God’s grace, live a relatively normal life most of the time.

Choose

There are some of Leah’s belongings that I haven’t looked through at all since she died. Today, while going through a few of those, I came across a booklet that she had received at  Girl’s Brigade called ‘Spiritual Sparkles‘.

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I know that being a part of Girl’s Brigade was really important to Leah and that she would probably have read this booklet from cover to cover. I found myself glancing through it as I thought about my daughter. My attention was suddenly gripped by this page:

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The ‘secret post-iter‘! That’s where she got the idea from! Leah was well known for writing encouraging notes on post-its and leaving them for others to read. In March 2013 Leah introduced this concept at the LOST outreach weekend for young people in Limavady.

Before we left Sam’s House in Bristol in October 2013, I was dispatched to the shops to buy her a packet of post-it notes. Afterwards one of our friends posted this on Facebook:

Sams House Post It (1)

After Leah died our eldest daughter Rachel showed me this post-it that Leah had stuck on her bedroom mirror:

Rachel's Post It

Leah also had lots of post-its stuck up around her own bedroom to encourage her as she recovered from her bone marrow transplant and battled GvHD (graft vs host disease). She struggled with the very unpleasant side-effects of high dose steroid therapy and chemotherapy hair loss and she needed all the encouragement she could find:

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I miss Leah’s little notes; every time I do a clear out I find some little card or note of encouragement that I received from her over the years. I cry for what I have lost, I thank God for what I have had and I carefully place each note or card in a Memory Box.

I think the idea behind Operation Beautiful  is really worthwhile. Their website explains their purpose:

The mission of Operation Beautiful is to post anonymous notes in public places for other people to find. The point is that WE ARE ALL BEAUTIFUL. You are enough… just the way you are!

I know that Leah was very concerned about the many negative messages that young people are getting and the effect that this is having on their self image and their self esteem. I can see why this simple concept would have really appealed to her. I think that it’s a lovely idea.

The Gift that Keeps on Giving

The Gift that Keeps on Giving

Before we went to Bristol I read the daily devotional Streams in the Desert via an app on my mobile phone. I was being blessed and helped by these devotional readings, which were first published in 1925.

While Leah and I were in Bristol one of the ways in which friends and family from home blessed us was with post – lots of it. We were the envy of the other families staying in Sam’s House because most of the post was for Leah and I.

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Every time Leah moved to a new hospital room, her boyfriend Nic helped to arrange her cards so that she could gaze at them from her bed and receive encouragement from them. During the weeks that Leah and I were able to stay at Sam’s House, her cards adorned our room there too.

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One day in August 2013 a package addressed to me was deliver to Sam’s House. The first thing I always try do is guess who a parcel is from. However the handwriting on this parcel was unfamiliar to me.

When I unwrapped the package there was an array of pocket sized items, thoughtfully chosen for my situation; lovely lip balm, pretty tissues, M&S boiled sweets, scented alcohol hand gel – all such necessary items for the circumstances that I was in at the time. Best of all, there was a beautiful leather bound copy of Streams in the Desert. All of this from a “Bible study friend” at home in N. Ireland.

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This little book, along with my Bible, has been a treasured part of my life since then. I would describe it as the daily devotional that reaches the parts that other devotionals don’t reach. Two and a half years on and it continues to be the gift that keeps on giving. I never cease to be amazed by how relevant it is to how I’m feeling or to what I am going through.

Here is an excerpt from today’s reading:

Streams in the Desert 16 April 16

Mother’s Day Weekend 2016

Mother’s Day Weekend 2016

We as a family are indebted to the Northern Ireland Cancer Fund for Children for their help and support. We have once again benefitted from one of their amazing therapeutic short breaks at Daisy Lodge in Newcastle, Co. Down.

I’ve previously written about our trips to Daisy Lodge in Daisy Lodge, Back to RealityParenting Teenagers, The Gaping Hole of Grief, and in A Haze, a Daze and a Maze.

On Tuesday 30th April 2013, when Leah’s Haematology Clinical Nurse Specialist at Altnagelvin Hospital told me about the NICFC and suggested referring us to them for support, I had no idea what that support would look like.

Leah with flower in her hair
Leah before she became ill

Initially we were allocated a Specialist Worker. Our Specialist drove the 70 miles from Belfast to meet with our family and we warmed to her straight away. Our initial contacts with her were of the “getting to know you” variety, as she assessed what our needs were and explained to us what help was available.

When Leah and I returned from spending 14 weeks in Bristol, traumatised from all that had happened, our Specialist was there to support us. Within days she pulled up in her car and took Leah and I out for afternoon tea in a quiet location. The cafe had a gift shop attached so we browsed there too. After so many weeks of sickness and hospitalisation, it felt abnormal to be doing normal things, but it was very helpful to be doing them in the company of somebody who understood our journey and who could support us emotionally.

Leah was immune compromised and unwell and she had to spend a lot of time at home in her bedroom. Our Specialist understood how boring this would be for a teenager, she talked to Leah to find out her interests and started her on jewelry making. Our Specialist provided the materials and Leah was able to make gifts for some people that Christmas.

Then, during the 2.5 weeks that Leah spent in ICU in Belfast City Hospital before she died, our Specialist spent time with me, in the hospital cafe, providing me with emotional support and giving me time to talk.

Leah 20 Dec 2013

Leah in December 2013, three weeks before she died

After Leah died, our Specialist kept in touch with us and she ensured that we as a family availed of the therapeutic short breaks at Daisy Lodge in Newcastle, Co. Down.

Daisy Lodge
It’s very difficult to be a parent when you’re grieving and your heart is broken – potentially every family member becomes ‘lost’ and isolated in their grief and sadness. It’s very difficult to do things together as a family when the very act of doing so is such a painful reminder of the one who is missing.

Coming to Daisy Lodge as a family has become a vital part of our healing. When we are there, the five of us sleep in adjoining rooms so we are constantly in close contact.

All meals are provided so there isn’t the distraction of shopping/preparing food/cleaning up – we are there simply to enjoy each other’s company.

While staying at Daisy Lodge, parents and adult children are offered a complementary therapy session (massage/reflexology), to ensure maximum relaxation. There’s usually an opportunity for the Mum’s and older girls to get their nails or makeup done as well.

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Always, in the background, the therapeutic specialist staff are available to listen and to support. There are optional group activities that all the family can take part in. It really helps to know that on all occasions you’re in the company of people who understand; whether you are interacting with the other families staying there or with the courteous and compassionate staff.

This past weekend our girls played board games in our bedroom on the Saturday morning – that would NEVER happen at home.

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Saturday afternoon all five of us went for a walk at Tollymore Forest Park, when we are at home we’d be doing well to even get two family members agreeing to do anything together.

At Tollymore, Simon and Miriam displayed a newfound interest in nature photography!


We chatted, we ran, we laughed, we remembered, we healed another little bit.

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Then we (minus Simon – his computer beckoned) headed into Newcastle for Maud’s Ice-cream – it was yummy!  

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After a delicious evening meal back at Daisy Lodge (we will be rolling home) Miriam, Rachel and I put on Lush face masks and then they both gave me a massage as one of my Mother’s Day treats.

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After this, Horace and Rachel headed off to use the sauna downstairs.

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Later on Horace and Simon played a game of pool together. I was feeling very relaxed (!) and said that I would just lie in bed and rest my eyes for a little while. I must have been very relaxed because I fell into a deep sleep and had the best night’s sleep that I’ve had in ages. I didn’t even hear any of them coming to bed.

Sunday morning (Mother’s Day) us mums had a choice between getting our makeup or our nails done. I already knew what I wanted. Leah loved painting her nails and she used to paint my nails too. I seldom wear nail varnish since she died. Getting my nails done would be a special way of remembering her on Mother’s Day.

Each mum also received a gift bag of treats. I waited to open mine until I was back in the room with my girls. Rachel and Miriam gave me a Yankee Candle. I love candles.

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Then there was just enough time for a relaxing bath, with one of the Lush bath bombs that my eldest gave me for Christmas, before heading down for dinner.

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Sunday lunch, as always, was truly scrumptious.

Sadly after dinner it was time to pack up and say goodbye – Rachel back to University life in Belfast and the remaining four of us back to our home where our two younger children rapidly became their usual monosyllabic selves and retreated to their caves bedrooms absorbed in their electronic devices. However, I feel so rested and relaxed and I have lots of happy memories and gorgeous photos.

The Cancer Fund for Children support:

  • Children who have been diagnosed with cancer
  • The siblings of a child who has been diagnosed with cancer
  • The parents of a child who has been diagnosed with cancer
  • A child whose parent has been diagnosed with cancer

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We as a family very much appreciate the fundraising efforts of so many people who have walked, swam, ran, cycled, abseiled, done parachute jumps or given their loose change to support the Cancer Fund for Children.You are helping to bring healing to families whose lives have been ravaged by a cancer diagnosis.

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The Struggle

The Struggle

Two weeks ago I added ‘studying’ and ‘work placement’ to my already rather full schedule. Since then I have really struggled emotionally. My emotions are screaming at me to give up, that this was a crazy idea. My head is simultaneously reminding me that this is a door that God has opened for me and that I went into this really believing that it’s what I’m meant to be doing. To be fair, it’s only for three months – how hard can that be?

For the past year I’ve worked only three days per week and the other two days have given me space to grieve. Without that space right now I’m struggling – big time. Work isn’t the problem – I love my job, it’s everything else that I’ve added on, albeit temporarily.

Add to that the fact that this time two years ago was when Leah’s illness really took a turn for the worse. The last weekend in September 2013 started off well. Leah was looking forward to a planned meeting on the Monday with our lovely consultant, at which we had been promised that we would be given a date for booking our flights back home to Ireland.

Leah’s boyfriend Nic had flown over to spend the weekend with us. This meant that I had some time to myself – a rare occurrence – I had spent it cleaning and bleaching with another oncology Mummy, getting a house ready for her and her little boy to spend a few hours outside the confines of the Bone Marrow Transplant Unit. She’s Irish too and we had enjoyed the ‘craic’ together. Devastatingly, her gorgeous son Caiden died in similar circumstances to Leah in October 2014.

Then, on the Sunday night, Leah told me that she was passing blood in her urine. So, on Monday, instead of our consultant giving us the dates for booking our flights home, he readmitted us to the Bone Marrow Transplant Unit.  Leah went on to develop a new complication every month until the one at Christmas/New Year that finally claimed her life.

I’ve cried a lot today, whilst wishing that I could use the time to focus on the E-learning that I’m supposed to be doing for this training course. I’ve really found that ‘time management‘ is not one of my strengths since Leah became ill and died.

Then on a shelf in my room I spied a book that I bought recently but hadn’t had time to read. It’s called “When the Hurt Runs Deep” by Kay Arthur. I heard Kay Arthur speak live a few years ago and I loved her energetic style of Bible teaching. She devised the Precepts Bible Study method, I was a regular attender at a local Precepts Bible Study until Leah became ill.

I started reading her book today. On page 73 Kay quotes Psalm 139:13:

Psalm 139:13 (AMP)

For You formed my innermost parts;
You knit me [together] in my mother’s womb.

Kay says that God knows the exact sperm and the precise egg that comes together to make us who we are. This stopped me in my tracks. Leah was conceived while we were having investigations for secondary infertility. Every month we longed and prayed that I would get pregnant. I went for prayer via the “laying on of hands” from those whom God has gifted in the healing ministry. Yet, God in His sovereignty allowed Leah to be conceived with either an egg or a sperm containing a mutated gene that would one day lead to her receiving a diagnosis of myelodysplasia with monosomy 7 caused by a GATA2 deficiency.

Then on page 77 of Kay’s book, I read a passage of Scripture that Leah and I used to read frequently. It brought us such great comfort. Leah’s illness separated us at times from most of what we held dear in life, so we tried to focus on the one certainty that her illness could never deprive us of – God’s love.  

Romans 8:35-39 (NKJV)

35 Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword? 36 As it is written:

“For Your sake we are killed all day long;
We are accounted as sheep for the slaughter.”

37 Yet in all these things we are more than conquerors through Him who loved us. 38 For I am persuaded that neither death nor life, nor angels nor principalities nor powers, nor things present nor things to come, 39 nor height nor depth, nor any other created thing, shall be able to separate us from the love of God which is in Christ Jesus our Lord.

Then Kay Arthur writes “No hurt is so strong that it can separate you from His love. Your hurt is not intended to drive you from God but to God.

Kay Arthur

Kay’s words remind me once again of the true source of my strength, of the only way that I’ve made it through the past two and a half years – by trusting God and leaning on Him. It isn’t easy and it’s not going to be easy but I just have to keep on going.

Just as the Israelites were told in Exodus 16 to gather the manna (heavenly bread) daily, so I also need to meet with God on a daily basis so that my soul receives the nourishment that it needs to survive and hopefully even to thrive.

Or, to once again quote from my favourite worship singer/songwriter Matt Redman, I must abide in Him:

Abide With Me

I have a home
Eternal home
But for now I walk this broken world
You walked it first
You know our pain
But You show hope can rise again up from the grave

CHORUS
Abide with me
Abide with me
Don’t let me fall
And don’t let go
Walk with me
And never leave
Ever close God abide with me

VERSE
There in the night
Gethsemane
Before the cross
Before the nails
Overwhelmed
Alone You prayed
You met us in our suffering and bore our shame

BRIDGE
O love that will not ever let me go
Love that will not ever let me go
You never let me go
Love that will not ever let me go

VERSE
And up ahead
Eternity
We’ll weep no more and sing for joy
Abide with me
We’ll weep no more and sing for joy
Abide with me

IMAGINE by Katie Dalgoutte

IMAGINE by Katie Dalgoutte

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September is Childhood Cancer Awareness month.

There was a time when I did not know this.

In September 2013, Leah and I were in the third month of our stay in Bristol, where she had received a bone marrow transplant for myelodysplasia and monosomy 7, a rare haematological malignancy. In Leah’s case this was caused by an even rarer GATA2 genetic mutation.

On Monday 30th September 2013, we had an appointment with Leah’s consultant, at which we had been promised that Leah would be given a discharge date and the go ahead to book our flights back home to Ireland. Leah was so excited, she could hardly wait.

Devastatingly, Leah became very unwell on the Sunday night. Leah saw her consultant alright – he arranged for her to be readmitted to a tiny isolation room on the Bone Marrow Transplant Unit. We were heartbroken.

While in that room, I first discovered the poem “Imagine” by Katie Dalgoutte.

In this poem Katie describes what I was feeling, but couldn’t put into words.

I have never been able to read this poem without crying.

“Imagine”

Imagine being told your child is seriously ill.

Imagine crying until you think there’s nothing left.

Imagine feeling like you’ve been punched in the stomach and wandering the corridors, as if your life was on pause for days on end, not able to comprehend what is happening.

Imagine signing a consent form knowing that death is an option.

Imagine having to hand over your child to surgeons for endless hours and waiting…

Imagine having to watch as your once active child isn’t even able to open their eyes for a week.

Imagine the terror…

Imagine the pain of having to leave your baby in the care of strangers and not being able to sleep by their side.

Imagine standing by as your baby’s body is pumped full of poison.

Imagine holding your baby while someone holds a mask over their face as they struggle in fright.

Imagine holding your baby countless times while someone sticks needles in them while they scream.

Imagine the guilt…

Imagine being told the percentage chance that your child might survive or leave you.

Imagine holding back the tears when your other child is carried away from you screaming “mummy” not understanding why you won’t come home.

Imagine watching as within two days your child loses all their hair.

Imagine losing all your independence and identity and just becoming someone’s Mummy.

Imagine not being able to leave the house for fear of infection.

Imagine not being to able to make any plans apart from hospital visits.

Imagine being stuck in isolation and not seeing anything but four walls for days on end.

Imagine learning a whole new vocabulary of words which is all you talk about anymore.

Imagine good friends being too uncomfortable to see you or speak to you anymore.

Imagine the loneliness…

Imagine perfect strangers passing comment about your son

But with the emptiness …

Imagine the kindness of strangers who don’t know you

Imagine the incredible support from people you’ve never met but know how it feels.

Imagine how special each cuddle is that you feel the need to memorise it.

Imagine the magic of each smile knowing that this smile was lost for weeks and now it’s back

Imagine how fragile and precious life feels

September is Childhood Cancer Awareness month, if I hadn’t told you, would you have known? It’s swept under the carpet as a taboo subject.

Imagine if it couldn’t be taboo in your world, because it was your world…

Imagine if I had known the symptoms,

Imagine if all GPs knew the symptoms,

Imagine if you felt you had the power to help others, not be in the same position…

Imagine … Don’t pity, don’t sympathise, just spread awareness and just imagine, because it could be you …..

                         by Katie Dalgoutte

Leah asleep - awareness month

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Alexandra – A Very Beautiful Girl

Alexandra – A Very Beautiful Girl

When Leah was on the lovely purpose built Adolescent Ward in Bristol, she was in isolation and could only avail of the excellent recreational facilities whenever none of the other patients were using them.

Adolescent Ward,  Bristol children's Hospital
Adolescent Ward,
Bristol children’s Hospital

However some of the other young patients were well enough to be “out and about” and they clearly enjoyed a break from the confines of their room.

I also liked to ‘escape’ periodically from our lovely little room. I used to get an opportunity to do this when Leah was watching television. Leah liked the fact that I would bring back the ‘ward news’ and thereby give us something different to talk about.

Some of these young patients were bored and only too glad of an adult to interact with. Others were more shy. One of those whom I regularly saw, pushing her IV pole around the ward, was Alex Lacey. I used to smile at her and she would smile shyly back.

The adolescent ward catered for teenagers with any kind of medical condition, but Alex’s chemotherapy baldness, indicated to me that she was there for similar reasons to Leah.

Then, in October 2013, Leah and Alex were both discharged to Sam’s House, the Clic Sargent Hostel. Leah and Alex met and chatted. Leah said to me afterwards: “Mummy, I wish that I had met Alex at the start of my time here, not the end, she’s so lovely.”

I wished that they had met sooner too, Leah had longed so much for company of her own age. I could see that she and Alex had immediately ‘clicked’ and were clearly very compatible.

I met Alex’s lovely Mum and we hugged – relationships tend to be ‘fast-tracked’ in these ‘life and death’ situations. The Lacey’s were getting ready to celebrate Christmas (yes, in October), as Alex would shortly be going for a bone marrow transplant and was not expected to be home in time for Christmas.

Leah and Alex exchanged contact details and promised to keep in touch.

Shortly after we returned home to Ireland, Leah and I were absolutely heartbroken, when Alex messaged Leah to say that there would be no bone marrow transplant – Alex’s lymphoma was incurable.

I really struggled to get my head around this.

As I subsequently encountered so many ‘firsts’ without my darling daughter, I thought of Alex’s parents – they were potentially having their ‘lasts’ with their darling, only, daughter.

My first Christmas without Leah, was their last Christmas with their daughter. I tried to imagine what that must feel like, but I couldn’t, not really.

Can we really and truly understand what anyone goes through, unless we have gone through it ourselves?

This morning Alex’s Mum posted the saddest message on her Facebook page – the kind of post that no parent ever wants to have to compose:

Our beautiful, precious daughter Alexandra has flown away to join the Angels. She passed away peacefully yesterday at home with David and myself by her side. Our hearts are forever broken. Xxx”

Alex

Please pray for all who mourn.

A few months back Alex recorded this very touching video in which she speaks so candidly about her illness, but without a trace of self-pity. I’ve watched it several times, but I have never been able to watch it without crying.

Alex’s lovely, gentle, sweet nature is so very evident.

Farewell To The Bristol Trail

Farewell To The Bristol Trail

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Three days spent sheep spotting and I managed to see 19 Shaun’s out of a possible 70. My Sheep Spotter App tells me that I’ve walked 23 Kilometres in the process.

Not very impressive?

Could have done better.” I hear you say?

I disagree, this trip to Bristol was never intended to be a race, or a “Who can see the most Shaun’s?” competition.

It was about having a relaxing holiday with my two girls and about remembering Leah.

I feel that I’ve achieved both.

I’ve cried and I’ve laughed.

On our first morning, we had breakfast in the Courtyard of Wesley’s New Room – or “breakfast with John Wesley” as I referred to it on my Facebook page.

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I returned there later on my own. I entered the peaceful chapel, climbed the steps that lead to the place set aside for quiet prayer and there I sat and reflected.

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I remembered how I had sat in that same place in August 2013, with my heart breaking, because my daughter was so sick and I didn’t know how to cope. God had met with me there. I write about this here.

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My heart is broken now, only in a different kind of a way. I sat and read the same verses from Philippians 4:6-7 that I had read then. I felt the same hot salty tears flow down my cheeks.

I read from the prayers that were taped to the table beside the Bible. I was glad that there is a prayer especially for the bereaved. It is a comforting prayer.

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On Wednesday I had breakfast with K who lives in Bristol. Her friendship meant so much to Leah and I during our time here. It was so lovely to have this time with her.

During this rendezvous, I bumped into the Dad of a young man who had been second next door to Leah in the Transplant Unit in 2013. I had not been in contact with them since leaving Bristol. As soon as I spoke to him, his face told me the news that I didn’t want to hear – his lovely boy had died just before Leah on the 23rd December 2013. This was a very emotional moment.

Thursday morning I had another breakfast date – an extra special one. Valerie’s teenage son Jonathan had a bone marrow transplant in Bristol in the Summer of 2008. Like Leah, he loved Jesus. Like Leah, Jonathan went to live with his Heavenly Father just a few short months after returning home to Northern Ireland, following his bone marrow transplant.

Like me, Valerie is the mother of four children. She doesn’t live near me, but a mutual friend introduced us after Leah died. Like me, Valerie loves Bristol.

Amazingly, when I told Valerie my dates for visiting Bristol, we discovered that our visits would overlap!
I don’t actually believe in random coincidences – as Leah told us after she was diagnosed “Mummy, we have to see the bigger picture”. There was definitely a “bigger picture” going on here.

Valerie and I sat in the warm sunshine and compared our journeys, remembered our children, and talked about the God who gives us the strength to go on.

Then, because it’s Bristol, there had to be a Shaun.

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The rest of the day was spent with my girls, enjoying the Bristol sunshine and doing some sheep spotting.

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No trip to Bristol is complete without a visit to ZaZa Bazaar to eat. Their food is A-M-A-Z-I-N-G! They are a buffet style “all-you-can-eat” restaurant serving food from all over the world. Rachel’s school friend Sally joined us for this one.

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Now we’re off to London for a few days, to stay with my sister.

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