Safe in my Father’s House

Safe in my Father’s House

Leah was an avid reader. Her earliest favourite books were a series by Usborne Books, where she had to locate a tiny duck hiding on every page. Leah loved ducks.

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Other favourites that soon followed, were the Spot Books and Kipper Books. Each page was soon memorised – by both of us.

Then Leah discovered the beautiful Maisy Mouse Books by Lucy Cousins. She fell in love with these too.

After this it was Enid Blyton – by the bagful. Leah’s shelves became laden with Enid Blyton Books. I wonder if there’s even one Enid Blyton title that Leah didn’t read.

I remember many years ago, the Annual Book Fair came to her Primary School and Leah asked me for money to buy “Happy Christmas Maisy“. In my naivety, I gave her £5 to take into school the next day. A rather forlorn looking Leah returned home from school with the £5 and a note from the teacher to say that she hadn’t enough money to buy the book that she wanted.

As a parent of four children, living on a low income, with a house already full of books, the idea of spending more than £5 on yet another book seemed ridiculous to me. But Leah was desperate to become the owner of this lovely Maisy book, with it’s sparkly pages. Leah loved glitter and sparkle.

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I’m not sure if Leah got the book then, or later as a Christmas gift, all I remember is how much the book was treasured and loved.

Nevertheless, “Maisy Mouse” is certainly not something that I’ve given much thought to in recent years – until yesterday.

I was heading up to Bristol Children’s Hospital, for a prearranged meeting, with some of the staff who had taken such good care of Leah and I during the 14 weeks that we spent here in 2013.

The Hospital has it’s very own Shaun the Sheep, standing outside on the pavement.

To my amazement, I discovered that this Shaun is called “Maisy and Friends” and has been designed by Lucy Cousins. I felt so emotional when I saw it.

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Even though Leah had long since grown out of those Maisy books, I know that she would have loved it. I felt both happy and sad when I saw it.

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When I stepped into the hospital lift to begin my ascent to the 6th floor, I was delighted to once again hear the voiceover of Wallace telling Gromit which floor we were on, every time the lift stopped. Despite the fact that Leah and I spent 14 weeks here, we never tired of this enjoyable distraction every time we travelled in the relevant lift.

Once I entered the waiting area for Oncology Day Beds my emotions became overwhelming. There was another family waiting there and I didn’t want them to see me crying. They looked like newbies. I didn’t want to upset them and steal their hope. I looked around and spied the water cooler, so I busied myself with consuming cups of water.

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Then our lovely TYA (teenage and young adult) cancer nurse specialist arrived and hugged me tight, quickly followed by the two amazing consultants who cared for Leah. We spent some time together. I gave them the fifteens that I had made for them in memory of Leah. Thankfully, the fifteens had survived the journey from Ireland unscathed. They remembered how Leah used to make these sweet treats for them when we were in Bristol. You can find the recipe here.

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Then I had time to chat with some of the lovely nurses on Day Beds. More hugs and then it was time to go again. They were all very generous with their time. This grieving mummy appreciated that so very much.

There was one more place that I still needed to visit, but it was going to be very emotional.  I needed the cover of darkness for this one.

At 10pm I left the girls in our hotel room and I walked once more in the direction of Bristol Children’s Hospital.

This time however, I walked on by, up St Michael’s Hill, in the direction of Sam’s House. Such a very familiar route.

In the safety of the darkness, my tears flowed. I wasn’t planning a visit to Sam’s House – I’m not ready for that yet. I certainly wouldn’t want to upset the families who are staying there, holding onto hope for their ill children.

I walked slowly past. I could see through the glass door, down the hall, to the room that belonged to Leah and I, for the duration of our stay.

My destination was just beyond Sam’s House, in the Royal Fort Gardens. Leah was immunocompromised and couldn’t go anywhere there was lots of people. She and I had enjoyed regular walks in the beautiful Royal Fort Gardens, in the evenings, when it was quiet.

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We would sit on a bench and talk. She used to make me stay very still, so that she could see how near the grey squirrels would come. I write about some of the good times we had here.

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There was no squirrels last night, only a very hungry looking city fox. Leah would have enjoyed that too.

I remained there a long time, in the stillness, remembering.

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To help soothe my broken heart, I played ‘Abide With Me‘ by Matt Redman/Matt Maher on continuos repeat on my phone, while I sat alone in the darkness.

Yet, I wasn’t alone.

My Heavenly Father, who knows the end from the beginning, was there with me.

The words of this song gradually seeped into my soul, as I sat and wept and yearned for my second-born child.

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

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

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

Oh 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

Oh You never let us go

And up ahead, eternity

We’ll weep no more, we’ll sing for joy, abide with me”

Eventually I took comfort from the fact that Leah is safe – safe in my Father’s house.

As David says in the Bible after the death of his child “I will go to him, but he will not return to me.2 Samuel 12:23

I walked once more around the unlit but familiar path, then headed out past Sam’s House again, back down St. Michael’s Hill, past the Children’s Hospital and back to the hotel.

The girls were still awake and I had a nice bit of time with them, before we all settled down for the night.

Returning to Bristol

Returning to Bristol

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Download Sheep Spotter App ~ done

Flight checkin online ~ done

Hotel checkin online ~ done

Passports in handbag ~ done

Packing ~ half done

Tomorrow my two daughters and I are flying to Bristol to do the Shaun The Sheep Trail in memory of Leah.

When Leah was in Bristol having her bone marrow transplant in 2013 there were eighty 6 foot high Gromit sculptures dotted around the town.

Leah managed a sneaky trip off the ward to see a small number of them before they were all gathered up and auctioned off in aid of Bristol Children’s Hospital.

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L-R Miriam, Rachel, myself and Leah

Before we left Bristol they had announced that they would be doing it all again in 2015, but this time using Shaun the Sheep sculptures.

Leah and I talked about it and agreed that we would just have to return for this event. She looked forward to coming back as a tourist rather than as a patient.

Much of Leah’s time in Bristol was spent in isolation, feeling very unwell. My outgoing, fun loving daughter found this very hard going.

We even discussed with her sisters about this plan to return in 2015 and see Shaun the Sheep. They were definitely up for it too.

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So, after Leah died, we talked about it and decided to go ahead with the plans, as part of our way of remembering her.

Now that it’s here I’m both excited and terrified.

Excited at the prospect of returning to the City where Leah and I spent 14 weeks and laid down some very precious memories. Leah wasn’t acutely ill all of that time, often times we traced the rainbows through the rain.

Terrified that it will all be too much for me emotionally.

Excited at the prospect of having a holiday with my two lovely daughters in a City that I absolutely fell in love with, despite the tragic reason that took me there in the first place.

At times in recent weeks I have asked myself “Vicky, why are you doing this? Why are you returning to Bristol?”

I have known since Leah died that I would return there for a visit, but I can’t quite explain why. It just feels right. Bristol was such an important part of our journey.

When I was with my counsellor a few days ago I asked her “Why am I doing this?” she’s very good, she always helps me, she replied “You know that you’re doing the right thing, but some things only make sense when you’ve done them and can look back at them.” I thought that was quite a good answer.

As with some other things that I’ve done since Leah died, which have been emotionally very difficult, I feel like we are honouring Leah’s memory and continuing her legacy within our family.

Sometimes you just have to go with your gut feeling, trust the process and hope and pray that everything works out.

I came across this F-E-A-R acronym recently and I like it:

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How To Make Leah’s Fifteen’s – The Ones Without The Cherries!

How To Make Leah’s Fifteen’s – The Ones Without The Cherries!

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I know that I’ve already posted a link in my blog to a “Fifteens” recipe, but I’ve often thought how much fun it would be, to post my own recipe, for the benefit of those who weren’t born and reared in Northern Ireland.

Leah and I used to make these together in Sam’s House when we were in Bristol and everybody loved them. I write about Leah’s Bristol baking sessions here and here.

Of course, everyone knows that the ability to make “Fifteens” is part of the birthright of those born in the “six counties” and in some of the neighbouring counties too. These simple to make and tasty treats are served at almost every social occasion here: birthday parties, coffee mornings, christenings, church functions, and wakes etc etc.

They are traditionally made with cherries, but Leah didn’t like cherries, so we make ours with chocolate chips.

INGREDIENTS:

400g digestive biscuits
397g tin condensed milk
50g choc chips/chunks
50g mini marshmallows
Some desiccated coconut for rolling out

First assemble all the required ingredients.

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Then crush the digestive biscuits. I usually do this by placing them inside a clean plastic bag and hammering them with a rolling pin.

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Children and spouses can generally be persuaded to help with this part.

Then place all the ingredients except the coconut in a bowl and mix thoroughly with a spoon.

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Shake some coconut on a clean worktop and place the mixture on top.

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Use your hands to gather the mixture into a sausage shape, rolling it in the coconut as you do so.

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Place on a tray in the fridge for a few hours, or overnight, until it’s firm.

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Then cut them into slices approximately 15mm thick.

Place each slice in a bun case.

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When I am giving these as gifts to people, I package them up nicely. These boxes and tags were bought in my local Pound Shop.

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Sometimes, if I want to make them “girlie”, I sprinkle some edible glitter in through the coconut. I usually buy this in Poundland, I love their Jane Asher range.

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If you like other ingredients, such as chopped nuts, you could add these as well.

The only limit is your imagination.

P.S. I have recently added a step-by-step ‘no-bake’ recipe for Chocolate Bird’s Nests  that you may also be interested in. Click here  to go straight to the page.

Thank you for visiting my blog.

Guest Post: The Art of Presence

Guest Post: The Art of Presence

I read lots of articles about grief but I repost very few of them. Generally, as I read through these articles, I agree with most of what I read, but there is almost always at least one sentence that I read and think “No, that’s not me.”

However, this morning I read a New York Times piece on trauma, entitled The Art Of Presence and immediately I could identify with all of the points that I was reading. I will reprint it in full at the end of this blog piece, but first I would like to comment on some of the parts that I identified with.

Yes, suffering is a teacher, I feel like I’m on a very steep learning curve. I wish that there could have been some other way, to learn the many lessons that I feel I have learned over this past two years, but perhaps there is no other way.

Pain

The art of presence” – oh how very much I have appreciated the many people who have been there for me and my family during the past two years. As the article says, some are “firefighters” and some are “builders”. There is a place for both. The article correctly says that there is no way of predicting which friends, or even acquaintances, will step up to the plate and provide that loving support.

Nowadays, I especially appreciate those who show that they still remember. I appreciate those friends, relatives, neighbours and work colleagues, who unobtrusively minister to my heart with a squeeze of the hand, a timely hug, a ‘like’ on a Facebook post, or a quiet “how are you doing”, accompanied by a facial expression that shows they really care.

To be honest, there are some days when I am driving to work, a church service or a social event, with tears streaming down my face and I have to wrestle with the urge to turn my car and head for the cemetery instead.

Do bring soup”. Oh wow, so many of you have done this for us in so many different ways.

You fundraised for us in countless ways, so that all of our financial needs were catered for. While Leah and I spent approximately twenty weeks in hospital, you came and helped Horace to build a beautiful house, that I thank God for every day.

All proceeds

You baked us buns, yummy, delicious buns.

You filled our freezer with delicious dinners, for months after Leah died. So much so, that not only was I able to feed my family, I was even able to invite close friends to eat with us too. This was very important to us, at a time when our house felt much too quiet and the ’empty chair’ was so conspicuous.

Some gifts were a “one off” and came at just the right moment. Like the generous gift of money pushed through our door the day before five of us flew to Bristol for our first Outpatients Appointment. As I stared at the bundle of Bank of England notes, I thought it very strange that they were all fresh, crisp, BANK OF ENGLAND notes – our cash dispensers here normally dish out Northern Irish sterling. Then I realised, that this friend had remembered, what we had completely forgotten – we needed Bank of England sterling for our two day trip to England the next day. I immediately thanked God for providing for our needs through the thoughtfulness and generosity of a friend.

Philippians 4 19

Don’t try to make sense of what has happened” – that is my prerogative, not yours. Some good things have come out of Leah’s illness and death, but that doesn’t make her illness and death “good”, or make it feel in any way justifiable.

As the Rev Craig said at Leah’s funeral, some things in life will always remain a mystery.

The Art of Presence

JAN. 20, 2014
David Brooks
Tragedy has twice visited the Woodiwiss family. In 2008, Anna Woodiwiss, then 27, was working for a service organization in Afghanistan. On April 1, she went horseback riding and was thrown, dying from her injuries. In 2013, her younger sister Catherine, then 26, was biking to work from her home in Washington. She was hit by a car and her face was severely smashed up. She has endured and will continue to endure a series of operations. For a time, she breathed and ate through a tube, unable to speak. The recovery is slow.
The victims of trauma, she writes in a remarkable blog post for Sojourners, experience days “when you feel like a quivering, cowardly shell of yourself, when despair yawns as a terrible chasm, when fear paralyzes any chance for pleasure. This is just a fight that has to be won, over and over and over again.”
Her mother, Mary, talks about the deep organic grief that a parent feels when they have lost one child and seen another badly injured, a pain felt in bones and fiber.
But suffering is a teacher. And, among other things, the Woodiwisses drew a few lessons, which at least apply to their own experience, about how those of us outside the zone of trauma might better communicate with those inside the zone. There are no uniformly right responses, but their collective wisdom, some of it contained in Catherine’s Sojourners piece, is quite useful:
Do be there. Some people think that those who experience trauma need space to sort things through. Assume the opposite. Most people need presence. The Woodiwisses say they were awed after each tragedy by the number of people, many of whom had been mere acquaintances, who showed up and offered love, from across the nation and the continents. They were also disoriented by a number of close friends who simply weren’t there, who were afraid or too busy.
Anna and Catherine’s father, Ashley, says he could detect no pattern to help predict who would step up and provide the ministry of presence and who would fumble. Neither age, experience nor personal belief correlated with sensitivity and love.
Don’t compare, ever. Don’t say, “I understand what it’s like to lose a child. My dog died, and that was hard, too.” Even if the comparison seems more germane, don’t make it. Each trauma should be respected in its uniqueness. Each story should be heard attentively as its own thing. “From the inside,” Catherine writes, comparisons “sting as clueless, careless, or just plain false.”
Do bring soup. The non-verbal expressions of love are as healing as eloquence. When Mary was living with Catherine during her recovery, some young friend noticed she didn’t have a bathmat. He went to Target and got a bathmat. Mary says she will never forget that.
Do not say “you’ll get over it.” “There is no such thing as ‘getting over it,’ ” Catherine writes, “A major disruption leaves a new normal in its wake. There is no ‘back to the old me.’ ”
Do be a builder. The Woodiwisses distinguish between firefighters and builders. Firefighters drop everything and arrive at the moment of crisis. Builders are there for years and years, walking alongside as the victims live out in the world. Very few people are capable of performing both roles.
Don’t say it’s all for the best or try to make sense out of what has happened. Catherine and her parents speak with astonishing gentleness and quiet thoughtfulness, but it’s pretty obvious that these tragedies have stripped away their tolerance for pretense and unrooted optimism.
Ashley also warned against those who would overinterpret, and try to make sense of the inexplicable. Even devout Christians, as the Woodiwisses are, should worry about taking theology beyond its limits. Theology is a grounding in ultimate hope, not a formula book to explain away each individual event.
I’d say that what these experiences call for is a sort of passive activism. We have a tendency, especially in an achievement-oriented culture, to want to solve problems and repair brokenness — to propose, plan, fix, interpret, explain and solve. But what seems to be needed here is the art of presence — to perform tasks without trying to control or alter the elemental situation. Allow nature to take its course. Grant the sufferers the dignity of their own process. Let them define meaning. Sit simply through moments of pain and uncomfortable darkness. Be practical, mundane, simple and direct.
Ashley and Mary went to Afghanistan a few months after Anna’s death. They remember that as a time out of time. They wept together with Afghan villagers and felt touched by grace. “That period changed me and opened my imagination,” Ashley recalls. “This thing called presence and love is more available than I had thought. It is more ready to be let loose than I ever imagined.”

 

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.

Father’s Day

Father’s Day

This morning I read a beautiful blog post about buying Father’s Day Cards called Fathers Are Not Idiots.

When Leah and I used to attend Oncology Day Beds in Bristol Children’s Hospital, we were normally in a single room, as Leah’s immunity was so low.

However, one day, I happened to glance in one of the three bedded rooms and what I saw there just melted my heart.

I saw a pale child, with chemotherapy hair loss, sound asleep on top of his bed. Also asleep on top of the bed, was the child’s daddy, with his large frame curled protectively around his little son.

I quietly called one of the nurses over and the two of us just stood there, drinking in this picture of parental tenderness and nurturing. I felt like I was standing on holy ground.

How I wished that I could photograph the scene, but this family were outpatients and I didn’t know them, so there would be no way to obtain their consent.

I had so many emotions in my heart as I stood there gazing at this sleeping daddy protecting his sick little boy. I wondered did that daddy ever have the urge to scoop up his beautiful little boy in his arms and run away, far away, from all the needles and the poison (chemotherapy) that promised to make his child better?

As parents, our desire to protect our children from harm is so strong, but as adults we understand that sometimes the cure hurts and that they may even feel worse before they feel better. We hope and pray that it will be a cure and that they will feel better, because for some children, like Leah, the cure kills.

Nevertheless, I thought it was so beautiful that here in this busy Oncology Outpatients Department, this Daddy did the one thing that he could do for his child; provide comfort by getting on the bed beside him and enveloping him in his arms as he slept.

Sadly, not everybody has such a positive experience of their earthly father.

We live in a broken world.

However, the Bible describes God as our Heavenly Father. The most famous prayer in the Bible begins with the words  “Our Father, which art in Heaven, hallowed be Thy nameMatthew 6:9 or, as I learned growing up “Ár nAthair atá ar neamh, go naofar d’ainm,”

This weekend Father’s Day is celebrated, but for those of us who don’t have an earthly father to celebrate, we have a loving Heavenly Father. One of the most beautiful descriptions of His love for us is in Zephaniah 3:17 (NKJV)

The Lord your God in your midst,
The Mighty One, will save;
He will rejoice over you with gladness,
He will quiet you with His love,
He will rejoice over you with singing.”

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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

My Sock Story

My Sock Story

I recently discovered this very interesting site called What’s Your Grief?

When I read this post called Sometimes Socks Are Sad I thought about my own ‘sock story’.

Shortly after Leah was diagnosed we received a very generous financial gift from a very dear family friend called Shirley.

Shirley also had blood cancer and had been through a stem cell transplant. She wasn’t financially well off, but she had a very loving heart. She outlived Leah by approximately six months. She is very much missed by all who knew and loved her, but like Leah, she looked forward to the day when she would meet her Lord and Saviour face to face, the one who loved her most of all.

I suggested to Leah that this money be used to purchase items that she would need during her hospital stay in Bristol. Anyone who knows Leah knows that she just loved shopping in Primark.

On one of our trips to Belfast for one of Leah’s many hospital appointments, she and I headed into the centre of Belfast to their massive Primark store. Leah filled our shopping basket with pyjamas, underwear and soft comfy socks.

Bristol has an amazing flagship Primark Store in the former House of Fraser building.

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Early on in our time there I was dispatched to this store to buy Leah more of her favourite socks. She called them “popcorn” socks because their texture felt bubbly like popcorn.

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During Leah’s time in the Bone Marrow Transplant Unit in Bristol, she went to theatre three times to have her Hickman Central Line removed and replaced. Leah was very ill and I always found these times very difficult emotionally.

On each of these occasions Leah had to remove all of her jewelry and wear a hospital gown and cap. The only personal item that she was allowed to wear was her socks. She always wore her ‘popcorn’ socks. The lovely paediatric anaesthetists always commented on her socks and told her how pretty they were.

Even though my heart was breaking, I really appreciated the effort they made to notice the ONE thing about my daughter that represented her individuality. It also represented their efforts to engage with us as fellow human beings.

It was a similar story with Leah’s earrings in the weeks that followed. Chemotherapy hair loss, facial hair growth caused by cyclosporine and hamster cheeks from her steroid therapy, had all changed Leah’s appearance. Yet the hospital staff were always careful to notice and comment positively on her earrings.

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Leah had a variety of cute earrings from Claire’s Accessories. I so appreciated the efforts made by the staff to notice that one small way in which Leah could still express her personality – so important, especially for a young person.

Then recently I was in Primark here in town. Without thinking, I wandered down the sock aisle. There I saw them, Leah’s favourite “popcorn” socks, in so many pretty colours.

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I held my breath, I fought back the tears. I remembered when Leah was so ill in Bristol, that she couldn’t even swallow her own saliva and I had to assist her with all of her personal care. Every day I put clean socks on her feet. Soft, comfy, colourful socks.

What a privilege it was to be able to care for my daughter and show her my love. I thank God for the health and strength that I experienced throughout Leah’s illness, that I was able to care for her 24/7. Even the chronic migraine that has dogged my existence since childhood, took a backseat during those months.

Someone told me today about a mother who could not cope emotionally when her adult daughter was dying of cancer. Throughout her daughter’s three month hospitalisation that preceeded her death, her mother never once visited her, because she couldn’t deal with the situation emotionally. This person said to me “Vicky, you are blessed, because you are so tuned in to your own emotions, that you were always available to Leah, emotionally and in every other way.”

I agreed with her, I am blessed in that way.

I’m not blessed that my daughter took ill and died.

I’m not blessed that my heart is broken.

I am blessed though, that God created within me, the resources that I needed to care for Leah and show her my love, while she was living.

The Transfer Test

The Transfer Test

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Very thankful today to receive a letter from the Education Authority (Údarás Oideachais) confirming Miriam’s place in Limavady High School for September, as I know that they are bordering on being over-subscribed for this intake.

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Rachel and Leah both got an A in their 11+ and chose to go to Limavady High School, a decision that neither they, nor us, have ever regretted.

Simon and Miriam chose not to sit the Transfer Test.

I remember Rachel, shortly after she received the results of her Transfer Test, cycling around outside the house, with a hen on the handlebars of her bicycle – she just loves the great outdoors. She was very pleased that she had passed.

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Her tune soon changed on the Monday, when she went into school and everyone kept saying “Oh, you’ll be going to grammar school.” She came home crying, because she didn’t want to go to grammar school.

Rachel asked me if she could swop her A grade with some other boy or girl who was distressed because they hadn’t got the grade that they wanted.

Nowadays, anytime that Rachel is home from her degree course at Queen’s University, she pops into Limavady High School, to say hello to the staff. This speaks volumes in my book.

When Leah got her A in the 11+, she was acutely aware that many of her friends had also got an A and would be transferring to grammar school.

Leah got a piece of paper and divided it down the middle. On one side she wrote the advantages of going to Limavady Grammar School, and on the other side she wrote the advantages of going to Limavady High School. Then she told me that she was going to her bedroom to pray.

A while later Leah reappeared and said “Mummy, I think that God wants me to go to the High School.”

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Leah waiting for the bus outside our house on her first day at Limavady High School

In my view, a happy child is a learning child.

We have always felt that Limavady High School values our children for who they are as people, not just for what they can achieve academically.

When problems arose, as they inevitably do, during the turbulent teenage years, these were handled with care and compassion.

Leah’s education was so important to her. The staff at Limavady High School understood this and supported her in her endeavours to continue with her studies even when she couldn’t attend school because of her low immunity.

The staff maintained contact with us and supplied school work, at Leah’s request, during our prolonged stay in Bristol.

On returning from Bristol, Leah was devastated to discover that the Western Education and Library Board would only provide 4.5hrs of Home Tuition to support her in studying for her GCSEs. As an A grade student this was a bitter blow to her.

On hearing about this, the school came up with an arrangement, whereby I brought Leah into school one afternoon a week and she met privately with some of her teachers for extra support. Leah’s Hospital Consultant agreed to this, providing Leah wasn’t in the corridor when the pupils were changing classes, as her immune system was very weak.

The pastoral care that our children have received both in Ballykelly Primary School and in Limavady High School, throughout Leah’s illness and since her death, has been exceptional.

We have been so blessed as a family by the sensitivity shown to us, by the staff and pupils, from both schools.

This time last year we were approached by Leah’s Form Tutor and Head of Year, to say that staff and pupils had agreed that they would like to have a permanent memorial to Leah by creating the “Lighthouse Award” to be awarded on Prize Day. We were really pleased about this.

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It is called ‘The Lighthouse Award‘ after a song by Leah’s favourite band Rend Collective. 

My Lighthouse

In my wrestling and in my doubts
In my failures You won’t walk out
Your great love will lead me through
You are the peace in my troubled sea
You are the peace in my troubled sea

In the silence, You won’t let go
In my questions, Your truth will hold
Your great love will lead me through
You are the peace in my troubled sea
You are the peace in my troubled sea

My Lighthouse, my lighthouse
Shining in the darkness, I will follow You
My Lighthouse, my Lighthouse
I will trust the promise,
You will carry me safe to shore (Oh-oh-oh-oh-oh)
Safe to shore (Oh-oh-oh-oh-oh)
Safe to shore (Oh-oh-oh-oh-oh)
Safe to shore

I won’t fear what tomorrow brings
With each morning I’ll rise and sing
My God’s love will lead me through
You are the peace in my troubled sea
You are the peace in my troubled sea

Fire before us, You’re the brightest
You will lead us through the storms

Wisdom Beyond Her Years

Wisdom Beyond Her Years

I’ve never enjoyed clothes shopping.

When my Mum was alive, she used to come with me when I had to buy clothes and we used to have fun shopping together.

In 2008 Mum died and that year I was traveling to London with my work to meet Prince Charles. This necessitated buying a new outfit. I went over town to go shopping, but ended up in floods of tears and came home empty handed.

Leah was ten years old at the time. She made me this lovely card when she heard what had happened – I found it tonight while looking for something else. My Mum was known as Kal.

This card left me in tears when Leah gave it to me in 2008, but that is NOTHING compared to the effect it’s had on me tonight since I found it again.

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Leah then offered to come shopping with me to help me pick an outfit. That following Saturday we went to Coleraine and got the complete outfit that I needed. From then on, Leah became my “personal shopper”.

In 2013, Leah and I ended up being in Bristol way longer than I had packed for, so I had to buy some new tops while I was over there. I used my phone to photograph the clothes in the shops, then I showed Leah the pictures and she advised me what to buy.

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The last item of clothing that Leah ever picked for me is so precious. It was from M&S in Bristol.

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Since Leah died, I struggle more with shopping than with anything else. Even today I sat in Tesco’s car park for 20 minutes before I could face into the store. I shop only out of necessity.

Facing people isn’t the issue – I enjoy meeting people.

It’s facing the shelves that’s the issue.

It’s never knowing when a strategically placed product will trigger a memory of a shopping trip with/for Leah and leave me completely undone.

When Leah had the haemorrhagic cystitis in Bristol, she had to have a high fluid intake of non fizzy drinks, so I scoured the shops for different drinks that she would like. I was so pleased with the variety that I had managed to buy for her on one particular trip, that when I got back to her hospital room, I lined them all up and took a photograph!

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I know that I could avoid the shops completely now by shopping online, but then I don’t like running away from difficult situations either. It’s no way to live.

Leah’s words to me in this card just blow me away………..they are the words of a little girl who had surrendered her life to Jesus, who read her Bible every day and who prayed and sought to love God with her whole heart.

She had wisdom beyond her years at times.

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