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.

The Cemetery Visit

The Cemetery Visit

The small item in the netting is a bag of chocolate coins - each of my children got these in their Christmas Stocking each year. I really struggle with only buying 3 Easter eggs and 3 Advent Calendars so I just bought 4 nets of chocolate coins.
The small item in the netting near the roses is a bag of chocolate coins – each of our children gets these in their Christmas Stocking every year. I really struggle with only buying 3 Easter eggs and 3 Advent Calendars so I just bought 4 nets of chocolate coins as per usual.

Tonight I did something that I’ve never done before.

I visited Leah’s grave in the dark on my own.

As I walked sobbing through the deserted Cemetery in the pitch dark, I asked myself if I felt any fear, but realised that I didn’t. As a friend used to tell me “when the worst that can happen to you has already happened, what is there left to be afraid of?”

I reached Leah’s grave and used the torch on my mobile phone to illuminate Leah’s photograph on her headstone. The headstone went on Leah’s grave in January, in time for her first anniversary, but the photograph took longer to get sorted. I saw it for the first time when I visited her grave yesterday.

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For the umpteenth time I asked myself “How did this ever become my life?

I had attended a Bible Study at our church earlier in the evening. We had finished up just as the young people were coming out of Youth Fellowship. The last time that I was at our church just as the young people were coming out of Youth Fellowship was two years ago – collecting Leah.

I crouched down beside Leah’s headstone, facing the lights of the City. I could hear the whirr of the little windmills that adorn some of the graves. I could see the flickering of solar lights on other graves. I gazed across the silhouettes of rows and rows of headstones and thought about how much each person was and is loved by their nearest and dearest.

During the day, the cemetery can be quite busy and I feel a bit self conscious giving way to my emotions, but I didn’t have to worry tonight. I had the place all to myself.

After a while, I used my mobile phone to listen to a song that Leah and I used to snuggle up together and listen to when she was very distressed – Oceans by Hillsong.

When the cold wind had succeeded in chilling  every fibre of my being, I decided that it was time to return home.

OCEANS (Where Feet May Fail)

You call me out upon the waters
The great unknown where feet may fail
And there I find You in the mystery
In oceans deep
My faith will stand

And I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine

Your grace abounds in deepest waters
Your sovereign hand
Will be my guide
Where feet may fail and fear surrounds me
You’ve never failed and You won’t start now

So I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine

[6x]
Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior

Oh, Jesus, you’re my God!

I will call upon Your name
Keep my eyes above the waves
My soul will rest in Your embrace
I am Yours and You are mine

One Thousand Gifts

One Thousand Gifts

One year and one month – that’s how long it’s been.

People have stopped saying “At least you’ve all the firsts over you now.”

I know people meant well and I definitely would rather people said something rather than nothing, but I never quite knew how to respond to that one.

Was I supposed to feel some sense of achievement?

I don’t.

I don’t want anything to be “over me” that increases the distance I feel between me and my daughter.

As time moves on it poses other problems too:

Because I work with families I’m sometimes asked what age my own children are, so I truthfully answer 20, 16, 15 and 11. I omit the fact that our 16 year old is in heaven, forever 16.

I’m there to support these families and to hear their story, not for them to hear mine.

In 7 weeks time my 15 year old will become 16 – what do I tell people then? How do I bluff that one without lying, or making things even more complicated?

Even though it’s been 13 months, the wounds of grief are far from healed, they have a thin scab on top. It takes very little to dislodge that scab and cause those wounds to become raw and bleeding once more.

In church last Sunday I was feeling quite composed, not particularly emotional, none of the hymns that had been sung so far had any particular association with Leah or her illness journey.

Then, while the offering was being lifted, photos of the previous weekend’s Youth Fellowship Residential scrolled on the screen at the front of the church.

Unconsciously, my eyes searched for Leah amongst the photos of the young people, then my heart broke afresh because she wasn’t there.

My husband’s hand gripped my arm, he was crying too.

Like so many other Sunday’s that I’ve sat sobbing in church, I wanted to leave, to escape, to run away, but I forced myself to stay in my seat.

I fear that if I ever get up and walk out, that I will never ever come back.

Not because I’ve fallen out with God – certainly not – but because I would have given in and let the pain have the upper hand.

It would be the easiest thing to do – some times I want to just give in to the pain and let it consume me.

However I’m trying really hard to shift my focus off the pain that threatens at times to consume.

I’m reading a book by Ann Voskamp called One Thousand Gifts: A Dare to Live Fully Right Where You Are.

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Before Leah became ill, reading was one of my favourite activities.

I’ve often said that my favourite place to be is in bed with a good book – no 50 S. of G. for me!

Unfortunately, since Leah became ill and died, I’ve really struggled with my concentration and attention span, so reading a book now takes huge amounts of will power.

Ann Voskamp writes in very flowery, poetic language which I have found to be something of an “acquired taste”. I prefer a more direct, down to earth style.

Having said all of that, her book is very good and I’m learning a lot from her.

Ann suffered many adverse experiences in life including witnessing her little sister being knocked down and killed by a truck. She has struggled emotionally, but she eventually learned the importance of giving thanks to God for the many good things that we have in our lives.

This book really is about so much more than this, it’s also about finding God in the everyday moments of our daily lives.

There’s a free app (sadly only for Apple devices like the iPhone or iPad) that you can download and use as an online diary to record all the things that you’re thankful for. You can write in the app and use it to take photos.

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It’s helping me to count my blessings, big and small.

God will let you bend but He’ll never let you break

God will let you bend but He’ll never let you break

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On Monday 25th March ’13 Leah was due to have her first bone marrow biopsy, in the Royal Hospital for Sick Children in Belfast, to try and find a reason for why her blood counts were consistently so abnormal.

The day before, she was feeling very anxious. As she headed out to Youth Fellowship at our church that Sunday night I advised her to speak to her youth leaders about how she was feeling and to ask them to pray with her.

I waited anxiously for her coming home, hoping that the evening had been helpful to her. She burst excitedly through the door “Mummy, they wanted someone to do an I am Second video clip for the Youth Service in church in a few weeks time and I did it.”

“I am Second is a movement meant to inspire people of all kinds to live for God and for others. Actors. Athletes. Musicians. Business leaders. Drug addicts. Your next-door neighbor. People like you. The authentic stories on iamsecond.com provide insight into dealing with typical struggles of everyday living. These are stories that give hope to the lonely and the hurting, help from destructive lifestyles, and inspiration to the unfulfilled. You’ll discover people who’ve tried to go it alone and have failed. Find the hope, peace, and fulfillment they found. Be Second.”

Leah was so excited and felt so privileged. One of Leah’s heroes and role models was Bethany Hamilton, a champion surfer who had her arm bitten off by a shark and she had done an ‘I am second‘ video clip. I don’t remember much chat about the pending bone marrow biopsy after that.

When I got to watch Leah’s ‘I am second‘ video clip I was so moved. I love the bit where Leah says “God will let you bend but He’ll never let you break.” When Leah was  subsequently diagnosed I remember thinking to myself “Leah, you will learn the truth of those words like you have never known them before.”

She did – I saw Leah bent almost to breaking point in October ’13 when she was battling awful side effects from her bone marrow transplant. However in January ’14 when Leah was critically ill in ICU, she was so filled with joy and peace and love and contentment. She was a princess preparing to meet the King of Kings.

Leah’s ‘I Am Second’ video