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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That’s the thing about pain. It demands to be felt.

That’s the thing about pain. It demands to be felt.

Tuesday of this week (my day off) I found myself experiencing a vague feeling of unease and restlessness. I struggled to focus on the tasks that I had intended to complete that morning.

This caught me by surprise. Although this time last year I struggled to even get out of bed on my days off work, recently I’ve been coping quite well and my concentration and attention span have been relatively good. This progress has been a huge relief to me and it’s been nice to feel a bit more like the me that I used to be.

However, this past Tuesday was different, I was struggling to concentrate and I wasn’t sure why. In desperation I decided to vacuum the house. I’m not exactly a domestic goddess but I find vacuuming quite calming.

Gradually my thoughts started to come together. It is mid-term. The children are off school – my teenage son didn’t even stir in his sleep while I vacuumed under his bed! This time three years ago, right in the middle of mid-term, Leah had her first ever admission to our local oncology/haematology ward.

In January and February of that year (2013), three good friends of mine had been pleading with me to meet up with them for a good catch up. I kept putting them off as I was worried about Leah’s health, although she did not as yet have a diagnosis.

Finally on the Wednesday of mid-term week I agreed to meet up with them for a meal. However, as I lifted the last spoonful of my dessert to my mouth, Horace phoned me to say that Leah wasn’t well. Within two hours Leah and I were in a single room on the Sperrin Ward. This is the adult Oncology/Haematology ward of our local hospital. I had never set foot on this ward before. Apparently they had never had a patient as young as Leah before either. It was only a few weeks after Leah’s fifteenth birthday.

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Leah investigating the bed controls during her first admission *as one does*

On our way to the ward, Leah had spied several health promoting posters on display in the hospital corridors. She used her mobile phone to photograph these posters for inclusion in her GCSE coursework – she never missed an opportunity!

On the few previous occasions when I had been in hospital with any of my children, we had always been on a Children’s Ward. It felt very scary being on a cancer ward with my young, as yet undiagnosed daughter, even though the facilities and standard of care were excellent. This was a world that I didn’t want to have any part of.

A few weeks ago I made arrangements to meet up with those same three friends later on this midterm week, not realising the significance of that decision. Thankfully we aren’t meeting in the same place as we did in 2013, as I would find that too upsetting.

I cry most days, but yesterday as my emotions bubbled up to the surface they felt really overwhelming, so I tried to stuff them back down again. First I ate chocolate – I seldom eat chocolate but I do keep an emergency supply.

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That didn’t numb the pain, so then I remembered the Magnum choc ices in the freezer and I ate one of those too.

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Nope, that didn’t work either. My emotions were clamouring for space. I’ve quoted this line from The Fault in Our Stars before as I think it’s so good:

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There are times when the pain that we feel (for whatever reason) must have its way with us. I’m a massive fan of Brené Brown and I love this quote from her book Rising Strong which I’m currently reading:

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Someone once described child loss to me as being like a wound that scabs over but never really heals. Sometimes when we are least expecting it, we have an experience that knocks the scab off that wound and leaves us raw and bleeding once again and there is absolutely nothing that we can do except to find a private space and shed those tears. Then we have to wait once again for the wound to scab over.

The Importance of Encouragement

The Importance of Encouragement

At the age of 40 I became pregnant with my fourth child. That was a surprise – albeit a very pleasant one! Now, at the age of 50+ I have become a University student for the first time in my entire life.

Previous to this, my closest contact with any university, was attending weddings in the Honan Chapel in University College Cork or more recently attending Foyle Vineyard at Magee in Derry.

All of my nursing training was hospital based. I trained in the days when students weren’t supernumerary – we ran the wards, with only a small number of qualified nurses there to supervise us.

Things are very different now of course. Nursing training is university based and it’s a lot more academic than when I trained.

I have let my nursing registration lapse and I want to renew my mental health nursing qualification –  the only way to do this is via a Return to Practice course, which I am doing at Ulster University – Magee Campus. Most of it will be placement based, two days per week. It will also involve E-learning, a lot of reading and an assignment. I intend to do this while also continuing with my normal job, which is part-time. Time management is going to be a very big challenge.

This week I took annual leave from my work in order to attend the five full days of Induction/Theory Block which form the introduction to the course. In the lead up to starting this course I have felt both excited and terrified. Excited because I have always enjoyed working in the area of mental health and I’m looking forward to developing my skills and my knowledge. Terrified because I didn’t quite know what to expect; fear of the unknown and fearful of the challenges of time management.

There was one problem that I didn’t foresee though. Of the thirteen of us in the class, only two of us are returning to mental health nursing, one is doing children’s nursing and the remainder are doing adult general nursing. I of course knew that this would be a likely scenario, I just hadn’t thought it through to it’s logical conclusion.

The logical conclusion is that all of the teaching so far has been geared towards nursing in an acute care setting. This is not in and of itself a problem, as most of it is stuff that we all need to know, like drugs administration and infection control.

The problem for me however, is that all of this discussion of scenarios regarding the care of ill patients in an acute hospital setting is constantly reminding me of the many weeks that I spent in hospital with Leah and everything that this entailed.

You might think that I’m naive, but I never anticipated this.

I’ve been back at my work, in the Health Service, for over a year and I’ve experienced more “grief triggers” in the first three days of this course than I would normally encounter in an average month when I’m doing my job.

One of the nice things about my current job, is that I plan my own work and it’s mostly based around home visits, so if I am struggling emotionally, I can move things around a little and take some breathing space until I’m feeling better. Even the fact of driving several miles through beautiful countryside to get to some of my home visits is very therapeutic.

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All of this has been really helpful for me in coping with grief. In the early months of returning to work after Leah died, there was even days when I decided to just do paperwork rather that face the public. Having this flexibility has enabled me to have zero sickness absence and still get all my work done by “pacing myself”. 

One of the difficulties for me this week is the intensity of it all – not much pacing and not a lot of breathing space for somebody like me who is at times dealing with some very strong emotions.

Today’s lectures were in a building in the grounds of Altnagelvin Hospital. I found this difficult, as the car park is opposite the South Wing where Leah had two admissions. I was walking through the hospital grounds, lost in my thoughts, when I met a man that I used to work with and be quite friendly with before Leah was born. I’ve met him once since Leah died and I had only only bumped into him a few times in the years previous to that, as we have both changed jobs since we last worked together in the late 1990’s.

When I bumped into him today, he looked at me with compassion in his eyes and told me that he prays for me almost every day. He told me that every week day when he’s driving to work (approximately 27 miles) he prays individually by name for each person that he knows of who is especially in need of God’s comfort. I could barely get the words out to thank him, I felt so overwhelmed with his kindness and so very thankful.

Isn’t it good to know that there are people like this gentleman – a qualified social worker – working in our Health Service?

There is a passage in the Bible in Exodus 17 where Joshua is fighting in a battle. Whenever Moses holds up his hands in prayer, Joshua and his army are winning, but whenever Moses gets tired and lowers his hands, then Joshua and his army starts to lose. So then Moses’ friends, Aaron and Hur come up with a bright idea:

Exodus 17:12-13 (GNT)

When Moses’ arms grew tired, Aaron and Hur brought a stone for him to sit on, while they stood beside him and held up his arms, holding them steady until the sun went down. In this way Joshua totally defeated the Amalekites.

I love this Bible story because what it tells me is how important it is to receive support and encouragement and to give support and encouragement. There were four key players in this story – Joshua with his army, Moses who prayed and Aaron and Hur who encouraged and helped Moses while he prayed.

Encouragement is so important. In another Bible story – the one about the twelve spies entering Canaan, Joshua on this occasion is one of the encouragers, while others are spreading negativity and discouragement:

Numbers 14:5-7 (NIV)

Then Moses and Aaron fell facedown in front of the whole Israelite assembly gathered there. Joshua son of Nun and Caleb son of Jephunneh, who were among those who had explored the land, tore their clothes and said to the entire Israelite assembly, “The land we passed through and explored is exceedingly good.If the Lord is pleased with us, he will lead us into that land, a land flowing with milk and honey, and will give it to us.

In the New Testament in 1 Thessalonians 5:11(NIV) we are instructed to:

Encourage one another and build each other up

Who can YOU encourage today and tomorrow, at home or at work or wherever you are?

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

Guest Blog – Who She Was To Me

Guest Blog – Who She Was To Me

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Jenny and Leah

One of Leah’s close friends has written this beautiful tribute to her, called Who She Was To Me.

The Bristol visit she refers to was in October ’13, but to me it feels like it was only yesterday.

It was Leah’s 14th week away from home and in another country. Much of that time had been spent in isolation. She had been horribly ill, enduring countless side effects from her treatment. She had become very lonely and longed to see her immediate family and close friends.

Children/young people with serious or life threatening illnesses sometimes get visited by well known singers or actors to cheer them up.

Leah wasn’t interested in seeing anybody famous, but she was really cheered up (and so was I) by the two separate visits that we had that week from young people from back home. They were in England for other reasons, but they both took the time and trouble to get to Bristol Children’s Hospital, to enter our world and brighten our day:

Who She Was To Me

She smiled a lot. Like most people, she was most beautiful when she smiled. I remember once describing her as a diamond; the pure white light of Christ shone in and what came out was the refraction of a thousand shades of colour, flowing bold and bright onto everyone around her. And, like a diamond, she shone brightest against the blackness of this world.

I met her when I was sixteen. She was wearing a “To Write Love On Her Arms” band around her wrist and instantly we clicked. Several weeks on it was like an ancient bond, something God himself put into motion.

One time in particular, I remember, after Youth Fellowship at her church her mother came to pick her up but my dad was typically running late. As any fifteen year old girl is aware, mummy wouldn’t be too pleased waiting in the car-park for longer than a few minutes. But she waited. She waited with me until my father pulled up in the red Passat. She hugged me tight and skipped off down the steps. That was the kind of person she was though. She would put others before herself; if you were happy she would rejoice. If you were worried or unhappy or lost she would empathise and intercede in prayer. She was a selfless being.

I didn’t realise is at this point, that one day this young girl would change my life.

“I haven’t been feeling too well for quite a while now. So mummy made an appointment and I have to go for bloods on Tuesday. There was almost worry in her eyes, but not quite- she wasn’t a worrier.

“The bloods were clear but ‘cause I’m still not better I have to go to Belfast for more tests. And one of those scans.”

“They didn’t find anything again. They want me back for an MRI next.” Before I left her this time, I made her a little card. A pathetic folded piece of pink paper with a flower on the front and a little word of encouragement on the inside. Petty as it was, she looked at it as though it was made of gold because she knew it was made of love.

It’s vivid, this part. When I dwell on it, it plays like a GIF on my mind. My phone rings as I exit Ebrington Square with my mum.

“It’s Leah,” he almost hesitates, “She has cancer. Her sister just told me, bone marrow cancer.”

I climbed into the backseat of the Passat with confusion stinging my eyes and explained to my parents what the subject of the call had been.

Facebook and texts kept us in contact. She and her mother created a Facebook page on which we were regularly updated. She told me she had to go to Bristol for treatment. I vowed I would visit her there. My cousin lives 20 minutes from where she’d be and I’d go to see her when I was over next. I promised. I kept that promise, even if it took a while.

I saw her once before this in Altnagelvin. She fell significantly ill right as her GCSE modules were approaching. Something called febrile neutropenia. She could have died if she hadn’t been treated right away. Rather than accept defeat and miss her GCSE modules, she sat in isolation and took her exams. That’s the kind of person she was; she battled when it seemed the fight was against her. She gained As and A*s in every one of them. I went to her on the evening of the Maths exams to give her mother a short rest. I gave her the small shell decorated bracelet I bought on holidays, and tying it around her wrist she gave me that same look she gave me when I gave her the petty card, as though I had given her gold. I remember the apple juice cartons on the bedside table; the way the old leather visitors chair creaked and my yelp as the scalding tap water touched my fingers and her voice filtered through the bathroom warning me a little too late that the water was boiling hot. I remember how we talked about the difficult things in our past that were so similar, and the way she couldn’t remember the name of that song and I began to tear up as something in me knew exactly which song it was and as I started to sing, she welled up too because she knew there was no way we were an accident.

In October, almost 5 months after I last saw her, I made it into Bristol. I waited outside for a few minutes before I turned to her husky voice calling me and her mother just behind her. I hugged her so tight! Not too tight, though. I knew she was still tender and I was afraid to hurt her. Her mot showed me up to the room which was home for the entire time she spent away from her old, normal life. I saw the giant Gromit statues painted all around the hospital, the ones from her photos and I smiled.

Through my time there, I was introduced to Leah’s new way of life, a life she was soon to leave behind. I met her nurses, doctors and tasted the tray-bakes they loved to share- fifteens, without the cherries. She asked to me tweeze her eyebrows. She joked at how although her hair was missing, her eyebrows didn’t co- operate, and if I made a mess of them, we could blame the chemo. That’s the kind of person she way. She wasn’t afraid to laugh amidst the adversity; to see the joy in life. I painted her nails. She liked to have her nails painted to mask the discolouration from treatment. I stayed a few hours, just to be with her. To see rest in the face of the girl who saw life as beauty everywhere. To see her smile in my company made me feel amongst royalty.

We never finished that last conversation. I never prayed with her that last time as was the only desire in my heart. We didn’t take a final selfie together. As the cannula in her arm spilled a pint of blood right before she got up for a scan, my empty stomach rushed me to the toilet as she was escorted to a familiar area of the hospital, which was of course in another building. The nurses refused to let me follow her until it was certain I wasn’t going to faint. An unfamiliar labyrinth of corridors met me and 20 minutes later my lift out of Bristol arrived. I stood outside contemplating running back inside only to be greeted with a beep of the horn and a text simultaneously- from Leah: “Where did you go? I’m back in my room now. Can you come back??” But I couldn’t. And that’s the way it went.

She came home again, to a new house. But home is where we belong and she belonged with her mother and father, her brother and sisters. Her friends and boyfriend.

On Boxing Day, Leah took difficulties breathing. They realised it was a difficult infection in her lungs, complications after treatment. She spent her sixteenth birthday in isolation on a ventilator and posted a selfie with her mummy. That’s who she was. She loved through everything that was against her.

On January 16th, sixteen days after her birthday I received a text from her mother reading “At…pm today, Leah went to be with her Lord…” and I collapsed. I wasn’t as strong as she had been all that time. She went home then. Real home; home to her Father. The One who taught her perseverance, to battle, to love unconditionally as she was loved unconditionally. Taught her to find joy amongst the pain. And she taught me. That’s who Leah was.