The Bells of Christmas

The Bells of Christmas

Christmas bells

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Within four days the bells of Christmas had been replaced by the ‘bells’ of the monitors to which Leah was attached in the Intensive Care Unit where she had been admitted as a result of respiratory failure.

Leah in ICU


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!

 

Leah and Timothy

Leah and Timothy

Timothy Jan 2013

While browsing through photographs earlier I came across this photograph. It gripped me with it’s simplicity. It was Leah with her little cousin Timothy who she absolutely adored.

My iPad tells me that this photograph was taken at 11.20am on the 2nd January 2013. Leah took the photo but I can remember very clearly the events of that day and exactly what I was doing around that time.

I was taking a phone-call from our GP who had been contacted by the haematologist at our local hospital regarding Leah’s blood tests, to say that there was a possibility that Leah may have leukaemia or something similar. The doctor wanted me to bring Leah to the He20130102_115913alth Centre straight away.

I informed the doctor that Leah had just left to have lunch in Limavady with her sister and her cousins, as a treat for her fifteenth birthday which had been a couple of day’s previous. I said that I didn’t want to spoil their fun and I would bring her down as soon as they got back.


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The GP said that the haematologist dealing with this was going on holidays to the South of Ireland at 6pm and he was very keen to run a range of blood tests on Leah with a view to making a diagnosis, before he left for his holidays. I insisted that I wasn’t willing to interrupt this special time that Leah was having, but that I would have her at the Health Centre by early afternoon.

Writing all of this in the cold light of day, knowing as much about blood cancers as I know now, my response sounds ridiculous. However, at that stage it seemed preposterous to me that there could possibly be something seriously wrong with one of my children. I wasn’t going to spoil a special birthday treat just so that somebody could draw more blood from her.
2012-05-13 20.48.52In retrospect I have no regrets either – although I would NOT advise anyone else to adopt such a cavalier attitude – time is indeed of the essence with some leukaemias. Leah loved her little cousin Timothy so much. Six months previous to this, Leah had spent a week in Donegal with Timothy and his mum Paula. Afterwards she had written in her diary “I stayed this week in Donegal with Timothy and I love him more than ever.” 

Leah talked about Timothy frequently when we were in Bristol and she couldn’t wait until she 20130127_132426would get to see him again. There was only one problem though, young children are often unwell and the kind of viruses that they contract are the ones that posed the greatest risk to Leah in her severely immunocompromised state. Our consultant regularly warned her “One chance encounter with a snotty nosed kid could kill you, you know.”

When we returned from Bristol, Leah was desperate to see her beloved Timothy. Unfortunately, like many young children in winter, he was prone to having a runny nose. It wasn’t one that cleared up in a hurry either. As Christmas approached, Leah pleaded with her haematology consultant to be allowed to attend the family get togethers that we always have at that time of year and especially to be allowed contact with Timothy, who unfortunately still had a runny nose, but was otherwise very well.

Our consultant, who had been lecturing her about the importance of re-establishing some normality in her life, responded to this request by asking “Do you HAVE to go to these family get togethers?” to which I replied “Yes, actually, we do!” It had now been six months since Leah had seen many of her extended family and she craved this contact.The consultant replied that Leah could go to the get-togethers and see Timothy, on the condition that she didn’t hug him, kiss him or have any face to face contact. We agreed to this.

A little while later another medical professional came into Leah’s room on the Bridgewater Suite to carry out a procedure and her first words to Leah were “I believe that you’re going to have contact with a child with a runny nose?” I didn’t say anything, but it really irritated me, because on the one hand they were telling Leah that she was getting better and that she needed to start normalising her life, yet on the other hand, when all we wanted to do was to spend a little time over Christmas with some of the people whom we loved most in all the world, we were being made to feel like criminals.

Leah didn’t appear to let it bother her and she looked forward with great excitement to the first family get-together on Friday night the 27th December 2013.

We had a routine outpatients appointment in Belfast to attend earlier that day first. Leah became very unwell in the car on the seventy mile journey to the hospital but she tried to get me to promise not to tell anyone that she was sick – so desperate was she to get home for that big family get-together that she had waited so long for.

As each medical professional came and did what they had to do, Leah sat and smiled at them. They never suspected a thing – none of the nurses even noticed what I had noticed – that Leah was breathing at a rate of FORTY respirations per minute – research suggests that an adult with a resting respiratory rate of over 24 breaths/minute is likely to be critically ill.

The last person to visit, after we had been at the hospital for half a day, was our consultant. I drew his attention to Leah’s rapid respirations and he sent us WALKING from the Bridgewater Suite in the City Hospital to the adjoining Cancer Centre for a chest X Ray. Leah was so breathless that I wasn’t sure if she was going to make it. I had to help her dress and undress for the X ray as she couldn’t manage it on her own, she needed all of her energy just to breathe.

When the consultant saw the results of Leah’s chest X ray he was embarrassed that he had sent her walking to the X Ray department in the Cancer Centre and he apologised to us. Admittedly, Leah had tried very hard not to look ill and she had been very successful. Leah was initially admitted to a single room in the Cancer Centre, but within 24hrs she was in ICU and the doctor was telling me that she may not survive.

Leah was so disappointed at not getting to the family party, but she didn’t make a big issue out of it. That is why, at the end of Leah’s life, even though she was unconscious, it was so important to get to the Children’s Hospice so that most of her family and very close friends could be with her.

I wanted to give Leah what she had so desperately wanted – that one last big family get together.

BLOODWISE – What’s In A Name?

BLOODWISE – What’s In A Name?

September is not only Childhood Cancer Awareness Month, it is also Blood Cancer Awareness Month.

This month, the charity formerly known as Leukaemia & Lymphoma Research have changed their name to Bloodwise. To coincide, they have launched a huge media awareness campaign in the UK.

I think that the name change and media awareness campaign is a brilliant idea.

Bloodwise tells us that –

There are 137 types of blood cancer and related disorders.

When Leah was initially diagnosed, we did not know where to turn. Nobody seemed to have heard of myelodysplasia with monosomy 7. We felt so isolated and alone. Any of the well known blood cancer charities just seemed to talk about leukaemia and lymphoma, so I thought that there was no point in contacting them for help and advice.

The name Bloodwise seems way more inclusive. I visited their new web-site, clicked on the menu tab in the top left hand corner, selected Information and Support, which caused another menu to pop up. Here I clicked on Information and Support, causing a new page to open. When I scroll down this page I see a sentence “I am looking for information on All blood cancers” and clicking the down arrow at the end of this, gives a drop down box where I see lists of various types of leukaemia, lymphoma and Other blood cancers which is where Myelodysplasia/Myelodysplastic syndromes are mentioned.

All Blood Cancers

When you visit their web-page, these headings are all ‘hyperlinks’, so if you click on any of them, you get more information about that particular diagnosis. So, for example, if I click on Myelodysplastic Syndromes, this page opens.

Well done Bloodwise – I like your rebranding! I also like your commitment to research, especially research into understanding the genetics of some blood cancers.

Two weeks after Leah received her diagnosis at Belfast City Hospital I contacted a member of staff at the Sperrin Unit looking for help and support. The Sperrin Unit at Altnagelvin Hospital is our local Haematology/Oncology Unit where Leah had been having investigations for four months prior to her diagnosis. The staff there referred us to the N.I. Cancer Fund for Children, who continue to provide us with very valuable support.

The following week, while attending an appointment at the Regional Fertility Clinic at ‘The Royal’ in Belfast, Leah suggested that we visit the Macmillan Information Service in the main hospital. The Macmillan Information Service Manager there referred Leah to a Clic Sargent Social Worker and a TYA Clinical Nurse Specialist, both based at Belfast City Hospital, where Leah had many of her appointments post diagnosis.

It was such a huge relief to us to have support at last and to be able to talk to people who understood. Finally we had found people who could answer some of our questions and who could help us start making sense of everything that was happening.

It wasn’t just our friends and family who hadn’t heard of Leah’s diagnosis before, on several occasions in N. Ireland I encountered nurses and doctors who hadn’t heard of it either.

On one occasion, when Leah was an inpatient, a young doctor held up Leah’s notes and said to me “Do I have to read through all of this or can you explain everything to me?” I very much appreciated his honesty and I happily explained everything to him.

To be honest, I found the attitude of this young doctor far more respectful, than the attitude of the young consultant who, when Leah was dying, said to me, “I’m glad that your niece is here, because she’s a nurse and she can explain the medical terminology to you.” Leah had been two and a half weeks in that unit at this stage – did I really come across as not knowing what they were talking about?

I never advertised the fact that I’m a nurse (dual qualified – general adult and mental health) as I just wanted to be treated as “Leah’s Mummy”.

However, in my experience, most parents of children and young people with chronic/life limiting illnesses very quickly become experts in their child’s condition and want to be treated as partners in their child’s care by healthcare professionals.

Furthermore, if this doctor had thought that I didn’t understand what he was saying, then he should have used simpler terminology or explained himself better. My daughter was D-Y-I-N-G, we were arranging her end of life care, within twenty four hours she was gone.

As a healthcare professional myself, I consider that it’s my responsibility to ensure that service users can understand me, taking into account their cultural and ethnic background, standard of education and any disability that may impact on communication.

Dr Kate Granger is spot on in her most recent blog post when she talks about the importance of communication and compassion. The many healthcare staff who exemplified those two qualities while caring for Leah and I, certainly made our difficult journey that little bit easier and will always be fondly remembered by me.

In closing, I want to raise awareness that many people with a blood cancer will require a bone marrow or stem cell transplant.

Unfortunately this didn’t save Leah’s life, although it may have given us some extra, precious, time.

Margot Martini
Margot Martini

           Nevertheless, a bone marrow/stem cell transplant has saved the lives of many other adults and children.

Here are some facts, taken from the website Team Margot, which is run by the parents of a gorgeous little girl called Margot Martini, who sadly also lost her life to blood cancer:

OVER 37,000 PEOPLE WORLDWIDE NEED A BONE MARROW TRANSPLANT…

BUT THEY MUST FIRST FIND A MATCHING DONOR.

ON AVERAGE, ONLY HALF OF THOSE SEEKING A MATCHING DONOR WILL EVER FIND ONE.

THE ODDS OF SUCCESS FALL TO JUST 21% IF THE PATIENT HAS AN ETHNIC OR MIXED RACE HERITAGE.

IT NEEDN’T BE THAT WAY – YOU CAN HELP!

PLEASE REGISTER AS A POTENTIAL DONOR –

YOU CAN SAVE A LIFE.

Leah Is My Sister

Leah Is My Sister

I was going through my 11 year old daughter’s paper work from her past school year today and I found this. I asked her permission to publish it on my blog.

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I also came across several instances where she had to write about her family. In each instance she included Leah and said that she had three siblings. I thought that all of that was so beautiful and I felt so proud of her.

Adults have told me of instances where children they knew had died years ago and their names were no longer mentioned. I’m so glad that our youngest is comfortable talking and writing about her sister who loved her so very much.

I also know from talking to other people, that in years gone by, children were shielded and “protected” from the so-called unpleasant realities of life. This was sometimes done by sending children away to stay with a relative when there was serious illness or death in the house.

Some adults who experienced this as children have told me that they found being excluded from what was happening, a hugely traumatic experience, as they were denied the opportunity of being able to process what was happening and of being able to say goodbye to their loved one. They then found it extremely difficult to work their way through the stages of grief and it compounded their distress.

I never knew that our story was going to end like this and I certainly didn’t have any time to work out a “game plan” for the best way to do things. However, a combination of divine inspiration and mother’s intuition, led me to involve all of our children in Leah’s journey as much as possible.

When we received that first phone call with Leah’s diagnosis on April 19th 2013, the consultant in Belfast suggested “tissue typing” our other two teenage children but not our youngest, who was only nine at the time. I immediate disagreed with him and told him “you can’t make a difference in our children“.

When I got off the phone and discussed it with our youngest, she demonstrated a mature understanding of the situation and said that she wanted to be part of whatever was needed to save Leah’s life.

Miriam getting blood taken to see if she was eligible to donate her bone marrow to Leah in April 2013
Our youngest getting blood taken to see if she was eligible to donate her bone marrow to Leah in April 2013

She also accompanied Leah on one of her appointments to the Sperrin Oncology/Haematology Unit in Altnagelvin Hospital in early July, past the sign that reads “No Children Allowed.” Technically speaking Leah was also still a child herself.

In early June when I received a telephone call with a summons to Bristol for an Outpatients Appointment for Leah and Simon, I instinctively asked on the phone if we could bring our youngest with us. I was told that it would be no problem, as there would be a Play Therapist there to keep her amused.

It was so important for her to see firsthand what a lovely “child friendly” hospital that Leah would be having her treatment in. The lively presence of our youngest on this trip, lifted all of our spirits too, as she was the only one who hadn’t sat through a depressing discussion of Leah’s diagnosis and prognosis.

On the 21st July 2013, our youngest flew to Bristol with Leah and me. On Monday morning the 22nd July, our youngest said goodbye to Leah and me at the door of the Bone Marrow Transplant Unit. It was only meant to be a temporary goodbye, as Leah expected to just get a test dose of chemotherapy and be back out again within hours. However she very quickly developed severe septicaemia and became very seriously ill.

A friend looked after Miriam and took her Gromiteering.
A friend looked after her and took her Gromiteering.

Our youngest next saw her sister at the end of August. Leah was an inpatient on the Adolescent Ward by then, but she was allowed out to Sam’s House, the Clic Sargent Hostel, for a few hours each day.

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The first day, Leah and her younger sister had great fun together, using the recreational facilities at Sam’s House. By the last day Leah was starting to become unwell and she had a lot less energy.

Our youngest and her dad visited again in October, when Leah was very unwell. Leah was overjoyed to see them both. She wasn’t well enough to leave the hospital, but they did girlie things together in Leah’s hospital room, like painting each other’s nails. Our youngest also helped me to shop for treats for Leah, while her Dad kept Leah company.

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Once Leah and I finally got home in November, Leah and her younger sister became inseparable. Every day when she got off the school bus, she headed straight for Leah’s bedroom and there she remained until I chased her off to bed.

One weekend, for a special treat, our youngest was allowed to have a sleepover with Leah. Leah’s immune system was very weak, so I was of course very particular about ensuring that her younger sister adhered to strict standards of hygiene.

The last ever photo taken of Miriam and Leah together on the 20th December 2013.
The last ever photo taken of Leah and her younger sister together on the 20th December 2013.

On Leah’s last evening at home, Thursday 26th December 2013, Leah cooked a cheese omelette for herself and her younger sister. Then they played together on Leah’s new WiiU. Their laughter rang out through the house.

I write here about how Leah pleaded in ICU for younger sister to be allowed in to visit her. I still feel sad about that.

A few months after Leah died, her younger sister was given the opportunity of attending an Art Therapy group for children dealing with loss, at the ETHOS Family Support Hub in Shantallow.

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She doesn’t like talking about her feelings, but she loves arts and crafts.

Attending this group seemed to help her to find a way of expressing her love for her sister through arts and crafts. After attending this group, she started printing off lots of photos of her sister and making up collages of these photos for her bedroom walls.

I’m glad that she’s found a way of expressing herself that she feels comfortable with.

Whom Shall I Fear?

Whom Shall I Fear?

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When I had finished my general nurse training in Our Lady of Lourdes Hospital in Drogheda in the ’80s, I went on to train as a mental health nurse in a very progressive psychiatric hospital in England.

At the end of that training, there was an opportunity to apply for a three month paid secondment in the hospital psychology department working as a junior therapist under supervision.

I had already had a student placement in the psychology department and I had loved it. The psychologists were a mixed bunch. Brian was a total behaviourist. Paul was completely psychoanalytical. Chan was eclectic. There was also a sex therapist and some others who I don’t remember as clearly.  I recall using CBT though.

I submitted a written application and then I was interviewed. To my absolute amazement and sheer delight, I was the successful candidate. As far as I can recall, my time was divided between all the psychologists and they each gave me at least one client to work with.

I remember working quite a bit with clients with fears and phobias, such as agoraphobia. I had to design and implement programs to help them overcome their fears. Some of my work involved visiting clients in their own homes and traveling with them on public transport, or even accompanying them on outings in their own car. I remember one lady driving anti-clockwise around a very busy roundabout when I was in the front passenger seat. This was a very anxious moment for me as well as for her.

Another lady had a fear of spiders and I was helping to do a desensitisation programme with her. I was supposed to accompany her to a local zoo and let her see me hold some kind of large spider, possibly a tarantula, but I chickened out!!! I wasn’t very helpful to her – was I?!

Seriously though, what I did learn, as I helped several people overcome their fears and phobias, is that severe anxiety/emotional distress is self limiting.

When triggered, the difficult, unpleasant feelings will increase dramatically and will feel incredibly uncomfortable.

However, those difficult feelings will eventually peak and then they will begin to subside again.

Little did I know that one day I would be using that knowledge to talk myself through difficult situations, in the same way as I once accompanied agoraphobic clients around Croydon.

Not because I’ve become agoraphobic, but because after such a major trauma as the illness and death of a child, so many places trigger such strong emotional reactions, that I now need to be my own therapist so as to prevent myself from having no-go areas in my life.

I think that the first time that I became aware of myself doing this, was last year when I was at our local hospital for another reason and I spontaneously went back to the Sperrin Oncology/Haematology Outpatients Department on my own and sat for 10 minutes opposite the seat where I once sat with Leah. I write about this here.

The next time was a bigger challenge. It was the week of Leah’s one year anniversary. I was in Belfast. I entered the Cinnamon Milkfoyer  of Belfast City Hospital, went to the cafe on the ground floor and ordered a cup of steaming hot cinnamon milk, which had been my staple diet while Leah was dying. I then went and sat in the nearby eating area, where I had sat on many occasions during Leah’s final two and a half weeks.

My heart was beating very fast, my vision was blurred, blood vessels were pounding in my ears. I silently prayed for help and reminded myself of what I used to tell my clients in Croydon all those years ago – these difficult feelings are self-limiting, they will peak, but then they will start to subside.

Sure enough, within about 10 minutes I was starting to feel calmer.

I know that it will be easier the next time.

I also had to put it into practice at work recently. A mandatory annual training update was scheduled to take place in the South Wing of our local hospital. I work in the community, so my inservice training is normally community based – not this time unfortunately.

The South Wing houses the Sperrin Oncology/Haematology Ward where Leah had two admissions, as well as housing some other departments.

Just parking in the nearby carpark is often enough to have me in tears, never mind walking through the doors AND down the very familiar corridors. By the time I had found a seat in the training room, everything within me was screaming “get out of here, go home, you can’t do this”.

One of my work colleagues asked me something and I looked at her blankly, unable to focus on her words or their meaning.

Inwardly I just kept praying for help and reminding myself of what I knew – the difficult feelings would peak, then they would subside. Admittedly, by the time that had happened, I was so exhausted, that I struggled to concentrate, but at least I showed up.

It will be easier the next time!

Back in the office a few days later, someone asked me something related to what had been discussed at the training. I looked at her blankly and said “Was I there when that was discussed?” Then we both burst out laughing! You have to have a sense of humour too!

Don’t worry, this is training that I attend on a regular basis, I will have other opportunities to update my skills and knowledge.

I have shared the above experiences in the hope that my story might be of help to somebody else, struggling with similar issues, for whatever reason.

Next month I’ve a short trip to Bristol planned, along with my two daughters, to do the Shaun the Sheep Trail in Leah’s memory. The Shaun in the City project was announced while Leah and I were in Bristol in 2013. Leah and I discussed our plans to come back for it and we promised to bring her younger sister Miriam. Leah looked forward to coming back as a tourist instead of as a patient.

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Even booking the tickets for this was very emotional. Everything we do will be emotionally loaded and will trigger so many memories – Belfast International Airport, Bristol Airport, my planned visit to Bristol Children’s Hospital, retracing our steps in so many different ways.

However, I just know that it’s the right thing to do, it’s all part of the remembering.

As I write this, a song by Chris Tomlin keeps playing in my head.

It’s called Whom Shall I Fear (God Of The Angel Armies)

I know who goes before me
I know who stands behind
The God of angel armies
Is always by my side

The one who reigns forever
He is a friend of mine
The God of angel armies
Is always by my side

My strength is in Your name
For You alone can save
You will deliver me
Yours is the victory

Whom shall I fear
Whom shall I fear

It’s been good to write

It’s been good to write

I recently had a long and very helpful conversation with a Christian friend who writes about her experiences as a bereaved Mummy and how God has given her the strength to cope.

One of the many things I found interesting in our conversation, is that she didn’t actually start writing until long after her children had died, whereas for me, writing has been one of my coping mechanisms.

When I mentioned this, she said something like, “I didn’t grow up in an era where it was fashionable to keep a journal.”
I laughed and replied “Well actually, neither did I.

I’ve been scribbling in notebooks since I was thirteen.

At home, or at summer camp, I wrote.

My peers sometimes found this unusual and I was at times questioned as to what all this writing was for.

My young self had no wise words with which to answer them.

I just knew that writing was how I coped, but I couldn’t explain this.

As I got older and life got busier, I stopped writing every day and I only wrote when I was deeply troubled.

Sometimes I wrote often, sometimes I wrote infrequently.

On the day that I received the phone call informing me of Leah’s diagnosis, I knew one thing for sure, that I needed to start writing.

I started a new notebook that very day. I chose a “Project Book” – one that was divided into five sections.
Section One was kept for hospital appointments. Before every appointment, Leah and I agreed what questions she wanted me to ask and I wrote them into this notebook.

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It became quite a laugh at our appointments, as the doctors and nurses would glance anxiously at my notebook, to see if we had a full page, or a half page, of questions for them to answer.

I remember on one occasion in Bristol, our favourite Doctor was on duty. Leah and I were ready for him with a full page of written questions. He good naturedly accepted the armchair that we had pulled up to the bed in anticipation of his arrival. He knew that there would be no hope of escape, until every question had been discussed.

I’m so glad now to have all of these recorded memories.

Deep distress and trauma blurs our memories and can leave blank spots.

Many times since Leah has died, I’ve poured over my notebooks, trying to piece things together, trying to make sense of it all.

Sometimes I read things that surprise me, even now.

We received Leah’s diagnosis on Friday 19th April 2013. I know that I googled it that weekend. I’m a nurse so I have some understanding of medical matters. Yet, on Tuesday the 22nd April one of my written questions was “Is this 100% curable?” How could I ever have been so naive?

When I look back now I can see how hope/faith/denial can get all jumbled up.

That’s ok.

We have to stay sane.

We have to keep hope alive.

Many times over the years, in my work with families, my colleagues and I have wondered how parents can seem oblivious to how unwell/delayed their child is, when it seems so blatantly obvious to us.

Reflecting on my own journey through Leah’s illness and reading my own journals, gives me some insight into all of this.

Sometimes the truth is so painful, that we just aren’t ready or able to take it on board.

What the doctor told us on Tuesday 22nd April was awful, but within weeks I was able to bury it and move on a little bit.

Then in June, when we had our first outpatient appointment in Bristol, the consultant there told it to us all over again. I was nearly physically sick. I didn’t want to hear it. I didn’t want to believe it.

My writings tell me something else too though.

They tell me of God’s grace and His faithfulness and the loving kindness of the many people who have blessed us along the way.

One of Leah’s and my favourite Matt Redman songs says it better than I can:

Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful
You are faithful, God, You are faithful

Scars and struggles on the way
But with joy our hearts can say
Never once did we ever walk alone
Carried by Your constant grace
Held within Your perfect peace

Never once, no, we never walk alone

The Project Book also has a pouch where I stored some of the beautiful cards and written prayers that people sent to us, along with hospital appointment cards.

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I kept one entire section for encouraging Bible verses and quotations that people sent to us.

Here’s two by Rick Warren that I found written in there:

The ultimate test of faith is not how loudly you praise God in happy times but how deeply you trust Him in dark times.

Job is a book of questions, most left unanswered. The most important one is this – will you serve God no matter what happens? 

For me, I can truly say, it’s been good to write.

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Beautiful People Do Not Just Happen

Beautiful People Do Not Just Happen

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

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

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

I spent most of that Thursday afternoon quietly praying.

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

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

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

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

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

Some of those changes are very sad, traumatic ones.

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

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

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

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