Are you Leah’s Mum?

At work yesterday I encountered somebody who looked vaguely familiar. I looked at her for a minute, then I asked “Do we know each other – have we met before?”

She thought for a minute, then she replied by asking “Are you Leah’s mum?” I smiled and said “Yes I am.” There was no trace of embarrassment on her part and no tears or display of emotion on mine. We didn’t even go on to discuss Leah, we identified a situation (non illness related) in which our paths had crossed before, then we talked about other work related matters.

However, for me it was a very special moment and my heart was warmed. This woman gave me that opportunity – so rare nowadays – to say out loud “Yes, I’m Leah’s mum”, and it meant so much.

When I phone the High School for some reason, or go to Parent Teacher meetings, I regularly introduce myself as “Miriam’s mum“; at the Grammar School I introduce myself as “Simon’s mum” and when I happen across former school friends of my eldest, I become “Rachel’s mum“. Sadly I rarely have opportunities to identify myself as “Leah’s mum” anymore.

Nine months after Leah died, shortly after I had returned to work in the Health Service, I was being introduced to a work colleague whom I hadn’t met before. The colleague who was introducing me momentarily forgot my name and inadvertently introduced me with the words “This is Leah’s mummy.” The person I was being introduced to immediately showed recognition and greeted me warmly. Of course, I then gave her my name as well. There was no evidence of awkwardness on anyone’s part and for me it was another very special moment.

Even though Leah is no longer on this earth, I will always be her mummy.

Guest Post – Dear Cancer Part 6

Dr Kate Granger writes with such simplicity yet such depth, her words move me to tears.

What does she ask for?

A few more weeks of being a good doctor, working in the NHS, serving her patients, doing the job that she loves…..

drkategranger

Dear Cancer,

Well, this was never a letter I expected to write… 4 years we’ve shared this curious relationship of ours. 4 years. Who’d have thought it?

Last time I wrote I was incredibly frightened. You had woken up just before Christmas and caused no end of issues. I’m not sure if I was more fearful of the impact of you on my creaking body or the impact further chemotherapy and the associated unrelenting infections were going to have on me.

I struggled so much with the poisoning this time, not just physically, but mentally too. It was almost as if every little essence of Kate was trickling away with each infusion. I don’t mind admitting to you how down I was, especially when I decided enough was enough on chemo front. I didn’t want to work. I didn’t know what to do with myself. I guess I just felt…

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Brokenness

I recently received a lovely encouraging message regarding my blog, from a mum whose son is in remission from his cancer treatment. She told me that although she feels blessed that her son is doing so well, she feels broken from her experience.

The brokenness – oh how I remember this brokenness that she’s talking about.

Although Leah was terribly homesick and desperate to get home, there was a part of me that wanted to stay in Bristol forever.

After spending 14 weeks immersed in the world of childhood cancer, I felt forever changed by what had happened. I felt like I didn’t know how to return to the outside world, or how to relate to those who hadn’t experienced our journey – Sam’s House just seemed a comfortable place to be, where no explanations were ever needed.

The medical expertise to understand and treat Leah’s rare condition lay in Bristol Children’s Hospital. I somehow imagined that if I could keep Leah there forever, then maybe we could beat this disease and all the nasty side effects of treatment. We had formed such close trusting relationships with the staff looking after us.

However the deaths of other children/young people who were in the transplant unit along with Leah, had a devastating affect on me.

I was also distressed about the children and young people dear to us who were still very ill in hospital, or who had just received bad news regarding their prognosis.

I returned from Bristol a broken person.

I felt like we were soldiers returning from the war, unable to celebrate our survival, because of the loss of much loved comrades who had fallen in the trenches.

I worried that people just expected me to be happy and grateful, because Leah had come through her bone marrow transplant and we were home at last.

I did feel thankful, I was very glad that Leah and I were home, but I also felt broken.

I had learned the horrible truth that calpol didn’t actually fix everything.

Nor could I ever again look at bruising on one of my children, without thoughts of leukaemia crossing my mind.

I could no longer treat illness in one of my children with casual nonchalance and tell myself “Ah sure, they’ll be grand.”

I was living in a state of high alert, with an overnight bag for Leah and I packed and ready at all times. If I heard her up to the toilet during the night I became anxious – her health was so fragile. I knew that if she spiked a high temperature, we had approximately one hour to get her to the hospital and on intravenous antibiotics.

I felt absolutely exhausted and totally lacking in energy.

I had no idea how to explain to people how I felt, or how to start rebuilding my life and my sanity.

On the 12th December 2013 I wrote in my journal “There are many days when I experience intense emotional pain. I want to be a walking example of the ‘joy of the Lord’ but I’m haunted by images of sick children.”

Then I wrote out a quote by Jerry Sittser that I had read the night before, that had resonated with me:

“I did not go through pain and come out the other side; instead, I lived in it and found within that pain the grace to survive and eventually grow.” ~ A Grace Disguised.

The Healing Question

Psalm 16:8-11 (NIV)

“I keep my eyes always on the Lord.
With him at my right hand, I will not be shaken.
Therefore my heart is glad and my tongue rejoices;
my body also will rest secure,
because you will not abandon me to the realm of the dead,
nor will you let your faithful one see decay.
You make known to me the path of life;
you will fill me with joy in your presence,
with eternal pleasures at your right hand.”

I live in a constant dichotomy between yearning for Leah, wishing that she was here with me and knowing that where Leah is now, she is safe and loved to perfection by her Heavenly Father.

Recently the question of healing has come up several times in conversation with different people and I have been asked for my opinion.

I believe in divine healing and I believe that God still heals today. I also however believe that God is sovereign and that He alone decides who will be healed, not us.

There seems to be a huge emphasis on healing in some Christian circles these days. That’s great if you or your loved one receives healing, but what’s it like for those who move in these circles and who don’t receive healing for themselves or their nearest and dearest? Then, they not only have their illness or bereavement to contend with, they may also be left feeling like second class Christians, or worse still, like spiritual outcasts or rejects.

In 1985 a lovely friend of mine called Sandra was diagnosed with cancer. She was a pretty, popular girl, in her early twenties. A group of us immediately started getting together to pray for Sandra’s healing. Then, one young man announced that God “had given him a word” that Sandra was going to be healed. There was much excitement and rejoicing.

Except for me.

I felt like the odd one out.

I was so uneasy and uncomfortable.

How could I speak up?

How could I say what I really thought?

They would think I had very little faith.

They might even think I wasn’t a proper Christian.

Eventually I could stay quiet no longer.

I addressed the young man in question and I nervously said, “Has God really told you that Sandra is going to be healed, or can you just not believe in a God who would let Sandra die?”

Silence!

Sadly my question was partially answered on the 12th August 1985 when Sandra went to be with her Heavenly Father, four months after receiving her diagnosis.

Before Sandra died, I visited her in hospital. I went in the hope of being a blessing, but I was the one who came away blessed. Sandra was weak and ill, but she just radiated peace and joy. The presence of God in her hospital room was almost tangible.

Why do some Christians become so fixated on healing as being the only possible option for their loved one?

Is it due in part to their inability to believe in a God who would let their loved one die?

Yet, for the believer, death is not the end, it’s a new beginning.

Yes the pain of missing Leah is awful.

Yes I cry every day.

I grieve for the fact that she wasn’t here to collect her Girl’s Brigade Queen’s Award recently.

I grieve that she isn’t right now sitting her AS exams.

I grieve that she isn’t heading off on an Exodus Team this Summer.

I will continue to grieve for every age and stage of development that we don’t get to experience with Leah.

Yet, I know that Leah is safe, I know that she is loved beyond my comprehension.

The Bible says that as believers, we need not grieve as those who have no hope. (1 Thessalonians 4:13 )

I don’t grieve as those who have no hope.

I do have hope, but it still hurts.

Every day it hurts, really, really badly.

I’m learning not to fear pain, I’m learning to live with pain.

I’m also learning that He is sufficient for my every need.

Thank You

I absolutely love the beautiful, grace filled, writings of Kara Tippetts, who recently died from cancer.

In this, one of her older blog posts, she writes –

“As I reached the parking lot, the dear woman and her husband, who asked me my hard times of day, jumped out of their car. Her husband wrapped me in a big hug and said, I’m 6:30 every day, and she called to me, I’m 10 every night. I was undone. I cry now thinking of this couple doing battle with me in my weakest moments. I would like to say those times of day are getting easier. They are not, but I know I’m not alone in them.”

As I read this, I think of the many who prayed for us (and continue to pray for us), when we were barely able to pray for ourselves.

So many days and nights spent in hospital with Leah, being told things no parent ever wants to hear, feeling so alone, yet always knowing I wasn’t alone.

In the quietness of our hospital room, a text or a Facebook message would come in, with a word of encouragement, or an assurance that somebody, somewhere, was praying for us.

How could we ever have got this far, without the many who have supported us emotionally, spiritually and practically?

One of my many favourite Bible verses has long been

1 Samuel 23:16 (NIV)

“And Saul’s son Jonathan went to David at Horesh and helped him find strength in God.”

It’s not always about preaching and teaching, sometimes it’s about a hug, a squeeze of the hand, a thoughtful but inexpensive gift, or just being there for somebody, letting them know that someone really does care.

Does God Answer Prayer?

Recently my husband was speaking to somebody whose wife had a cancer diagnosis and asked him how his wife was doing.

This man replied that his wife was doing really well and had returned to work. He finished off with the statement “God answers prayer.”

That kind of took our breath away. Not the fact that his wife is doing well – we are very happy about that.

It’s him telling us that all of this happened because God answers prayer.

Do people think that we didn’t pray for Leah to be healed?

Do they think that our prayers weren’t good enough?

Or was it just a throwaway comment, expressing his faith in God and not in any way meant to undermine ours?

Once I had calmed down, I reasoned that the last explanation is the most likely.

We’ve encountered many and varied responses from people of faith to the fact of Leah’s death.

One leader in a church that I occasionally go to, informed me a few months after Leah died, that she had died because of “lack of faith”.

He then quoted the Bible verse

Mark 6:5 NLT
“And because of their unbelief, he couldn’t do any miracles among them except to place his hands on a few sick people and heal them.”

You see, for some people, the illness and death of a child doesn’t fit into their neat “I’ve got all the answers” theology.

Even before Leah became ill, I never liked the idea of confining God to a denominational box.

In my opinion, God is way bigger than our pet doctrines and statements of belief.

Yes, I do believe in belonging to a local church and getting involved in the body of Christ.

The Bible says in Hebrews 10:25 GW

“We should not stop gathering together with other believers, as some of you are doing. Instead, we must continue to encourage each other even more as we see the day of the Lord coming.”

It’s just that I don’t like the idea that any one denomination has got exclusive rights to God.

I think that God is way bigger than the boxes that we sometimes try to squeeze Him into.

For the record, I do believe that God answers prayer. I continue to pray regularly for many people who are unwell.

I don’t know why some people get better and others die.

I don’t believe that Leah died because of “lack of faith”.

Leah herself certainly did not lack faith.

There were hundreds of churches and thousands of Christians praying and believing for Leah to be healed.

However, God isn’t like a genie in a lamp. It isn’t as simple as us just telling God what we want and then abracadabra – we want it, so we’ve got it.

The Bible says in Isaiah 55:8-9 NKJV

There are some things in this life that are always going to be a mystery.

Guest Blog – Who She Was To Me

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.

A delicate tension

After Leah’s transplant she really felt the cold – she loved to be warm and cosy in this fleece from Primark – Bristol has the most amazing flagship Primark store.

 

I’m so glad that we were able to have Christmas together

Thursday 26 Dec ’13 had that lovely after Christmas relaxed feel to it.

I had been a little concerned about Leah earlier in the day because she seemed a bit breathless.

I had checked her temperature with two different thermometers and both had given a normal reading.

Leah had got a Nintendo Wii for Christmas and now she and her younger sister were down in Leah’s room playing on the Wii, laughing and carrying on.

Sounded very reassuring.

Later in the evening Leah came up and proceeded to cook one of her specialties for herself and her sister – a yummy cheese omelette.

I was glad to see there was nothing wrong with her appetite.

Friday morning @ 8.30am as per usual, we set off on our 140 mile round trip for the Bridgewater Suite at Belfast City Hospital.

Leah’s older sister Rachel accompanied us.

The only difference on this occasion was that Leah was booked for an ultrasound of her abdomen and pelvis at 10.50am.

This meant she wasn’t allowed any breakfast but she needed to drink a significant quantity of clear fluids approximately one hour beforehand.

Leah settled down to doze in the car with her earphones in her ears, listening to music.

She asked me to wake her up when it was time to start drinking the water.

I did this, but shortly after she had started drinking, while I was driving on the motorway, Leah started vomiting and it seemed like she wouldn’t stop.

When there was absolutely nothing left in Leah’s stomach, the vomiting stopped.

I kept driving and suggested that the best idea would be to go straight to Rachel’s flat in Belfast where Leah could get cleaned up and borrow some clothes.

We would still be able to get to the hospital in time for her ultrasound, as this test was important.

Thankfully there was very little traffic and we made good time.

At Rachel’s flat, Leah seemed weak and needed me to to help her quite a bit.

She insisted that she wasn’t sick but said that drinking the water too fast had upset her stomach.

We got to the hospital in time and everywhere was so quiet, unlike a normal busy Friday.

We were in and out of the ultrasound dept in no time.

Then I headed in the direction of the cafe to buy the buns that were our usual weekly treat.

Leah didn’t want any buns – this was very unusual – Leah loved her food.

I said that she must be sick but she insisted that she wasn’t and again said that the water had “turned her stomach”.

I reflected silently on the fact that later that day we were scheduled to go to Donegal for our first big family get together since Leah’s bone marrow transplant.

Leah had been looking forward to this event for weeks and would not want ANYTHING to get in the way.

I said nothing – the doctor would decide if Leah was well or otherwise.

On the Bridgewater Suite we had the luxury of a private ensuite room for our day’s visit.

Leah and I chatted & laughed together about this & that.

She looked well, but refused all food when the lunch trolley came round.

I noticed that her breathing was very rapid – I discretely timed it using the big wall clock above her head and noted that her respirations were 40 per minute – not good I thought.

Our consultant came to see us and sent Leah – on foot – for a chest X-ray.

Halfway down the corridor I noticed how breathless she was getting and I was quite shocked and worried.

By the time we had walked back to our room again, an emergency CT scan of her lungs had been ordered and Leah was whisked away in a wheelchair.

I didn’t need to see the scan results to know we were in bother – the shocked expression on our consultant’s face told me that.

He called me over to the computer screen to look at an image of Leah’s lungs “Jeepers, no point showing me.” was my initial reaction but I caught my breath as I looked at the images – Leah was in bother alright – her lungs were filled with “consolidation“…….. as the doctor said “she’s far sicker than she looks“.

By now various other family members had arrived downstairs in the hospital, as some of them had been planning to travel with us to the family party.

Leah’s boyfriend Nic and his Mum Kerry had arrived too on their way back from England.

My head was spinning trying to make sense of who was going where.

Rachel left with my sister and the car. Nic went into Leah. I sat with Kerry as I tried to process all that was happening.

Thankfully I always carried an emergency overnight bag on these occasions.

Leah was admitted to a single room in the Cancer Centre.

I wish they would call it something more imaginative than “The Cancer Centre” – do we have to be reminded of the “C” word all the time?

Eventually Nic & Kerry left too.

Leah and I settled into yet another new environment.

The staff brought me a folding camp bed.

I’m a good sleeper and well used to sleeping in a hospital environment but this times was different – I was too scared to go to sleep.

Never once in 14 weeks in Bristol Children’s Hospital was I scared to go to sleep as I knew that Leah, no matter how ill she was, could give me a dig if she needed me.

This occasion was different, Leah seemed to be deteriorating so fast.

Between 9pm Friday night & 9am Saturday morning the ward staff sent for the doctor on call, on three different occasions, because they were so concerned about Leah’s medical condition – everything was happening too fast.

At 4am Saturday morning Leah was started on oxygen via nasal prongs, but as I lay on my camp bed listening, I couldn’t detect any significant improvement in Leah’s breathing after she started using the oxygen – this wasn’t a good sign.

By morning Leah was too breathless to even walk from her bed to the ensuite facilities in her room.

Later in the morning the ICU team were called to come and assess Leah but they said she wasn’t sick enough to need ICU at that stage.

At midday Nic arrived to spend the day with Leah.

After a while I went to a nearby coffee shop with a friend to give Nic and Leah some space.

A little while later Nic phoned me to say that I needed to come back because Leah had deteriorated further and would shortly be transferred to ICU.

Leah was never again well enough to have a proper conversation that didn’t involve typing on her iPad.

I’m so glad that we were able to have Christmas 2013 together as a family of six.