Mother’s Day Weekend 2016

Mother’s Day Weekend 2016

We as a family are indebted to the Northern Ireland Cancer Fund for Children for their help and support. We have once again benefitted from one of their amazing therapeutic short breaks at Daisy Lodge in Newcastle, Co. Down.

I’ve previously written about our trips to Daisy Lodge in Daisy Lodge, Back to RealityParenting Teenagers, The Gaping Hole of Grief, and in A Haze, a Daze and a Maze.

On Tuesday 30th April 2013, when Leah’s Haematology Clinical Nurse Specialist at Altnagelvin Hospital told me about the NICFC and suggested referring us to them for support, I had no idea what that support would look like.

Leah with flower in her hair
Leah before she became ill

Initially we were allocated a Specialist Worker. Our Specialist drove the 70 miles from Belfast to meet with our family and we warmed to her straight away. Our initial contacts with her were of the “getting to know you” variety, as she assessed what our needs were and explained to us what help was available.

When Leah and I returned from spending 14 weeks in Bristol, traumatised from all that had happened, our Specialist was there to support us. Within days she pulled up in her car and took Leah and I out for afternoon tea in a quiet location. The cafe had a gift shop attached so we browsed there too. After so many weeks of sickness and hospitalisation, it felt abnormal to be doing normal things, but it was very helpful to be doing them in the company of somebody who understood our journey and who could support us emotionally.

Leah was immune compromised and unwell and she had to spend a lot of time at home in her bedroom. Our Specialist understood how boring this would be for a teenager, she talked to Leah to find out her interests and started her on jewelry making. Our Specialist provided the materials and Leah was able to make gifts for some people that Christmas.

Then, during the 2.5 weeks that Leah spent in ICU in Belfast City Hospital before she died, our Specialist spent time with me, in the hospital cafe, providing me with emotional support and giving me time to talk.

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Leah in December 2013, three weeks before she died

After Leah died, our Specialist kept in touch with us and she ensured that we as a family availed of the therapeutic short breaks at Daisy Lodge in Newcastle, Co. Down.

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It’s very difficult to be a parent when you’re grieving and your heart is broken – potentially every family member becomes ‘lost’ and isolated in their grief and sadness. It’s very difficult to do things together as a family when the very act of doing so is such a painful reminder of the one who is missing.

Coming to Daisy Lodge as a family has become a vital part of our healing. When we are there, the five of us sleep in adjoining rooms so we are constantly in close contact.

All meals are provided so there isn’t the distraction of shopping/preparing food/cleaning up – we are there simply to enjoy each other’s company.

While staying at Daisy Lodge, parents and adult children are offered a complementary therapy session (massage/reflexology), to ensure maximum relaxation. There’s usually an opportunity for the Mum’s and older girls to get their nails or makeup done as well.

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Always, in the background, the therapeutic specialist staff are available to listen and to support. There are optional group activities that all the family can take part in. It really helps to know that on all occasions you’re in the company of people who understand; whether you are interacting with the other families staying there or with the courteous and compassionate staff.

This past weekend our girls played board games in our bedroom on the Saturday morning – that would NEVER happen at home.

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Saturday afternoon all five of us went for a walk at Tollymore Forest Park, when we are at home we’d be doing well to even get two family members agreeing to do anything together.

At Tollymore, Simon and Miriam displayed a newfound interest in nature photography!


We chatted, we ran, we laughed, we remembered, we healed another little bit.

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Then we (minus Simon – his computer beckoned) headed into Newcastle for Maud’s Ice-cream – it was yummy!  

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After a delicious evening meal back at Daisy Lodge (we will be rolling home) Miriam, Rachel and I put on Lush face masks and then they both gave me a massage as one of my Mother’s Day treats.

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After this, Horace and Rachel headed off to use the sauna downstairs.

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Later on Horace and Simon played a game of pool together. I was feeling very relaxed (!) and said that I would just lie in bed and rest my eyes for a little while. I must have been very relaxed because I fell into a deep sleep and had the best night’s sleep that I’ve had in ages. I didn’t even hear any of them coming to bed.

Sunday morning (Mother’s Day) us mums had a choice between getting our makeup or our nails done. I already knew what I wanted. Leah loved painting her nails and she used to paint my nails too. I seldom wear nail varnish since she died. Getting my nails done would be a special way of remembering her on Mother’s Day.

Each mum also received a gift bag of treats. I waited to open mine until I was back in the room with my girls. Rachel and Miriam gave me a Yankee Candle. I love candles.

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Then there was just enough time for a relaxing bath, with one of the Lush bath bombs that my eldest gave me for Christmas, before heading down for dinner.

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Sunday lunch, as always, was truly scrumptious.

Sadly after dinner it was time to pack up and say goodbye – Rachel back to University life in Belfast and the remaining four of us back to our home where our two younger children rapidly became their usual monosyllabic selves and retreated to their caves bedrooms absorbed in their electronic devices. However, I feel so rested and relaxed and I have lots of happy memories and gorgeous photos.

The Cancer Fund for Children support:

  • Children who have been diagnosed with cancer
  • The siblings of a child who has been diagnosed with cancer
  • The parents of a child who has been diagnosed with cancer
  • A child whose parent has been diagnosed with cancer

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We as a family very much appreciate the fundraising efforts of so many people who have walked, swam, ran, cycled, abseiled, done parachute jumps or given their loose change to support the Cancer Fund for Children.You are helping to bring healing to families whose lives have been ravaged by a cancer diagnosis.

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Holding on to Hope in my Life

Holding on to Hope in my Life

As I alluded to in my blog post The Struggle, I’ve found the past few weeks especially difficult, for several reasons:

  • The fact that I am doing a part-time university course along with working part-time, means that I simply don’t have time to access my usual sources of emotional support. My university course does however finish at the end of November (next month).
  • October was the month that Leah found the most difficult during her illness. A lot of very difficult things happened in October 2013.
  • Christmas and the New Year is approaching. Along with it come Leah’s 18th birthday and the second anniversary of her final hospitalisation and the crushing parting of her death.

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I’m very much a people person and one thing that I always enjoy, is a day out along with a group of women from our church to a Christian Women’s Conference. For many years we attended Focusfest together, originally this used to be in a big tent in Coleraine, but more recently it was in the Waterfront Hall in Belfast.

More recently we started attending the Irish Women’s Convention in Spires in Belfast. Last year when they announced that this year’s speaker would be Nancy Guthrie I exclaimed to the friend beside me “I want to book my place for next year right now.” I was so excited about the possibility of getting to hear Nancy Guthrie speak in person.

Nancy lives in Nashville and she has one living son called Matt and two children in heaven, a girl called Hope and a boy called Gabriel. She is an accomplished writer and Bible teacher.

Not long after Leah died I read Nancy’s book HEARING JESUS SPEAK INTO YOUR SORROWSome time after that I started using The One Year Book of Hope. I don’t use it every day, as I have several daily devotionals that I like to use – I dip in and out of it.

There was over twenty women in our group yesterday and our ages varied from women in their thirties to women in their eighties. Most of us traveled the 140 mile round journey to Belfast via Ulsterbus. We arrived just before before the 10am start time.

IWC Programme

Nancy was such an easy speaker to follow. She spoke about her own experience of losing two babies to Zellweger Syndrome, when they were only a few months old. Then she spoke from the book of Job in the Bible regarding the lessons that God has taught her and her husband through all of this.

The praise and worship was amazing, most of the songs and hymns that we sang were ones that have been really special to Leah and/or me in this journey.

The titles of Nancy’s three talks were:

  • When your world falls apart.
  • Questions we ask when life hurts
  • Hearing God speak in your storms

The talks will eventually be uploaded to the Irish Women’s Convention website – I highly recommend listening to them.

I wrote six pages of notes and that’s always a good sign! During our lunch break I deliberately browsed the book stall WITHOUT my purse, in the hope of being able to resist the lure of all those nice shiney books that I might never have time to read. However, when the day was over I returned to the book stall and purchased two books by Nancy Guthrie:

The book O love That Will Not Let Me Go is a collection of twenty-two short meditations drawn from the sermons and writings of classic and contemporary pastors and theologians, edited by Nancy Guthrie. The chapter that particularly caught my eye is one by Joseph Bayly entitled “Our Faith is in God not in Healing”. I haven’t had a chance to read it yet, though.

I think that there is so much misinformation and false teaching in Christian circles regarding healing, as was evidenced shortly after Leah died, when a Christian leader (not in my own church) arrogantly confidently told me that my daughter had died because of lack of faith. He then proceeded to quote the Bible verse

Matthew 13:58 (NIV)

And He did not do many miracles there because of their lack of faith.”

I write more about this subject in my blog post entitled The Healing Question and also in Does God Answer Prayer?

I love the quote on the back cover of Nancy’s book:

Nancy Guthrie on death

Yes, I am devastated and heartbroken at having to say goodbye to Leah, but I will never forget her faith and the peace and serenity with which she faced death – for me that was awe inspiring.

After the conference was over, most of our group went for a yummy meal at Acton & Sons on Brunswick Street. We had pre-ordered our food and the staff were both efficient and attentive. This gave us all further opportunity to catch up with each other and renew friendships.

After a delicious meal we had just enough time to walk to the Europa Bus Station to catch our bus. I arrived home with renewed strength to face my situation. I feel like my inner compass has once again been re-calibrated towards ‘true north’.

The Healing Question

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.

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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.

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Does God Answer Prayer?

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

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

Your Love Never Fails

Your Love Never Fails

Romans 5:5 (NKJV)
“Now hope does not disappoint, because the love of God has been poured out in our hearts by the Holy Spirit who was given to us.”

For most of January to mid July 2013, Leah had anaemia, thrombocytopenia and severe neutropenia; the main risk from this being susceptibility to infection.

Yet miraculously for most of that time, Leah was able to live a relatively normal life.

She attended Limavady High School up to mid May ’13. She attended Girl’s Brigade, Sunday SchoolChurch, L.O.S.T. (Limavady Outreach and Service Team)Youth Fellowship, BK Banter, went shopping, ate in restaurants, went to the cinema and travelled on public transport. She even went with the Girls Brigade for a weekend to an outdoor pursuits centre where she participated in every activity. I write here about Leah’s weekend away with the Girl’s Brigade.

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In February ’13 Leah had an appendicectomy and didn’t need antibiotics or a blood transfusion. She returned to school, via public transport, a mere ten days post surgery. The bus driver was very kind and lowered the bus for Leah every morning for the first week. Either her brother or her friends carried her school bag and escorted her around the school. She was determined not to fall behind with her school work.

Only once in that six months was Leah hospitalised for a high temperature – nothing ever grew in her blood cultures though and her temperature quickly settled.

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By the Summer of 2013, thousands of people were praying for Leah and I believed that prayer had created an invisible bubble of protection around her. This didn’t of course mean that we were foolish and threw caution to the wind. I was very aware of the need to help Leah make lifestyle decisions that took her low immunity into account and balanced sensible precautions with quality of life. For that reason, she dropped out of her Silver Duke of Ed Award, something that she was very upset about at the time.

On Monday afternoon 15th July ’13 we unexpectedly received a phonecall to say that a bed was available for Leah in the Transplant Unit and we needed to fly to Bristol that coming Sunday the 21st July ’13. The following few days were an absolute whirlwind of activity.

Thankfully one of my sisters came to stay, to help us get organised. Knowing that I would be away from my home and family for 2 or 3 months, there were many arrangements that needed to be put in place before we left the country.

As we prepared to go to Bristol I felt a fear of the unknown, but my overriding emotions were hope and excitement. I saw this as primarily an adventure whereby Leah would receive the treatment that would save her life. I believed that the combination of the prayers of God’s people and the expertise in Bristol Children’s Hospital would be a winning combination.

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On Monday 22th July ’13 @ 8.30am as I pressed the buzzer for Leah and I to gain entry to the Bone Marrow Transplant Unit in Bristol Children’s Hospital, Leah said to me “Mummy I don’t feel well.” That just about set the scene for things to come – whatever could go wrong did go wrong.

Within hours Leah was very seriously ill. Within a week Leah had five different bugs growing in her blood – abnormal ones that the doctors didn’t normally see in these circumstances, some were even resistant to antibiotics.

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Recently I sat and read through my personal diary from July/August 2013 and it made grim reading. To be honest I was shocked by some of the stuff that I read – I had forgotten just how awful those first few weeks were. I wrote about feeling so isolated and so devastated. I wanted to go somewhere where I could cry and scream, or even run away from all this awfulness, but there was nowhere to go – I needed to stay and care for and comfort my daughter. I felt disappointed with God and abandoned by Him and I wrestled in my heart with all of those thoughts and emotions.

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Do you know what was especially hard? It was looking at Leah and seeing in her face that she was wrestling in her heart with all of this too!

Sometimes we couldn’t even find words to speak to each other, as disappointment just hung heavy in the air between us.

No matter what though, Leah always wanted me to read the Bible and pray with her. We struggled at times to hold onto hope, but somehow in the midst of it all, we still knew the source of true hope.

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On Tuesday night 6th August Leah’s boyfriend Nic and his mum Kerry arrived in Bristol for a weeklong visit.

That was a major turning point for both Leah and I.

Leah was overjoyed to see her boyfriend. Nic proved to be most attentive and very capable, which meant that I was mostly off-duty during the day. Kerry was an excellent companion for me – there when I needed her but always sensing when I wanted space too.

During that week I was able to make phonecalls, get regular meals, fresh air, exercise, make friends with some of the other families of children receiving treatment and figure out my way around the centre of Bristol.

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That first Sunday that Nic was there with Leah was also my first opportunity to go to church at PipnJay in Bristol. God ministered to me so powerfully that Sunday morning. I write more about this in my blog post entitled Pip n Jay Church. Immediately after the service, four of the ladies in the church took Kerry and I into a side room and prayed with us for Leah and our situation.

By the time Nic and Kerry left Bristol, my strength had been renewed. Leah was also coping much better.

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The Bible verse that Leah had chosen in June 2013 for the prayer cards that were printed for her by our church was Nehemiah 8:10
“For the joy of The Lord is your strength.” 

Leah’s joy was again severely tested in Bristol in October ’13 due to a combination of unfortunate events: A baby we were very fond of died suddenly on the transplant unit at the end of September, Leah developed low mood as a side effect of medication, she became physically very unwell as a complication of her transplant and was readmitted to the Bone Marrow Transplant Unit AND all the time spent away from home and in isolation was really getting to her and she was dreadfully homesick.

It broke my heart to see my normally joyful, faith filled daughter, descend into the very depths of despair. A lovely nurse from the Child and Adolescent Mental Health Team (CAMHS) visited Leah a few times. One Saturday, when Leah was really struggling emotionally to cope with everything, the psychiatrist on call was brought in to see her. How physical illness and the side effects of treatment can ravage the mind!

Eventually, as Leah’s physical health improved, her mental health also improved. Getting home in November helped too. However, she was very anxious about catching up with her GCSE studies and even when home, her life was far from normal due to the complications of her transplant. Yes, Leah was happy and got on with things, but I could still sense an underlying low mood.

It was only in ICU in January 2014 when facing death, that Leah’s peace and hope and joy were fully restored. The closer she came to death the more joyful and peaceful she became. Leah told Nic that she wasn’t afraid to die. One Sunday afternoon in ICU Leah showed us the words of one of the songs that she loved to listen to –

“One Thing Remains” by Jesus Culture –

Higher than the mountains that I face
Stronger than the power of the grave
Constant through the trial and the change
One thing… Remains [repeat]

[Chorus:]
Your love never fails, never gives up
Never runs out on me [3x]
On and on and on and on it goes
It overwhelms and satisfies my soul
And I never, ever, have to be afraid
One thing remains

[Bridge:]
In death, In life, I’m confident and
covered by the power of Your great love
My debt is paid, there’s nothing that can
separate my heart from Your great love…

Yes the hope of healing left Leah and I disappointed, but not the hope of eternal life, not the hope of God’s love – there was no disappointment there. When I looked in Leah’s eyes in ICU in January 2014 I saw a different facial expression to the one that I had seen in those early weeks in Bristol, when we were both so shocked by how ill she had quickly become. In January 2014, although on a ventilator and critically ill, Leah’s face radiated joy and serenity.

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What about me? What about my joy and hope? On the 1st June 2013 I wrote in my diary that I was choosing joy to be my attitude as I walked this illness journey with Leah. I wrote that my time with Leah may be short or may be long, and I didn’t want to waste it being sad or depressed or angry – I was actually quite surprised when I recently read that in my diary, as I had forgotten ever thinking that way. I also wrote that my joy would come from knowing that God is in control of our lives.

By the time we returned from Bristol at the end of October ’13 I hadn’t much joy left, sadly. Firstly, having seen my daughter suffer both mentally and physically eroded my joy. Secondly, seeing so many other children very ill, on chemo and knowing the families of some who died, also stole my joy. I’ve had to live with where my memory has been. I write more about this in my blog post Brokenness.

In December ’13 when Leah developed a spontaneous fracture of her spine I was distraught. I hated to see her in pain and needing help with personal care, especially when she was supposed to be getting better. I often lay in bed at night battling my emotions and trying to rein in my thoughts. However I made a conscious decision to be joyful over Christmas so as to enjoy that time with my family. Christmas Eve night was the first time in six months that the six of us were together under one roof and it felt so good. We had two lovely days together before Leah’s final admission to hospital. I write about this in Altogether At Last and also in I’m so glad that we were able to have Christmas together.

Since then of course, my emotions have been through the wringer. I cry every day. I cry in supermarkets. I cry in church. I cry in forests. I cry a lot while driving the car – I remember all the times spent ferrying Leah to and from her appointments, listening to our favourite music. Crying just feels normal, I miss Leah so very much.

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The Bible says in Ecclesiastes 3:4

“A time to weep, and a time to laugh; a time to mourn, and a time to dance

Right now I’m in a season of mourning – grieving and mourning are a NORMAL response to loss. There’s no shortcuts, because I loved much, I grieve much.

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The Bible says in Isaiah 53:3 that our God is “a man of sorrows, acquainted with grief” – knowing that helps me.

What also helps is the many people – family and friends – whom God has used to bring help and comfort to me and my family. Some of these people are in for the long haul and are very present in our lives. Others are cyber friends who send an encouraging comment just when I need it.

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Some are friends or acquaintances who appear out of nowhere when I’m out somewhere and falling apart inside. They come up and say hello and give me a hug and chat for a couple of minutes and give me a chance to cry or talk about Leah. Then they are gone and I’m feeling so much better and inwardly I say “Thank you Lord – that was just what I needed.”

Maybe the real miracle of healing is the one that takes place in our hearts

Maybe the real miracle of healing is the one that takes place in our hearts

As we rang the bell on arrival at the bone marrow transplant unit that first Monday morning 22nd July 2013 Leah told me she had a headache – I thought it was due to all the stress of travelling.

We were shown into cubicle 4 and we waited for the doctor to arrive. Leah said she felt tired so I suggested that she lie down, then she said that she felt cold so I put a blanket over her, then another blanket.

Then she started shaking violently – she was having a rigor and we were suddenly in the middle of a full blown medical emergency.

The nurses on BMT were well trained and within minutes Leah had received pethidine and was getting intravenous antibiotics.

Leah had septicaemia…….and she had almost no immune system with which to fight it.

Although I had been told many times how ill my daughter was, I had always managed to push it to the back of my mind.

Leah looked so well – was it really possible that someone who looked so well could really be so ill?

There were hundreds, probably thousands praying for Leah, surely we would go to Bristol, she would sail through her treatment and we would be back home in no time at all.

However here I was in Bristol, far from home, Leah and I were in isolation in the Bone Marrow Transplant Unit and she was getting sicker and sicker.

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By Sunday 28th July Leah had not one but five different – mostly “gram negative” – bacteria growing in her bloodstream. “A zoo of bacteria” the doctor had called it.

Her all important Hickman central line had to come out. She had to have canulas inserted in both arms – she hated canulas and she almost always got phlebitis from them.

We were both devastated & we sat in stunned silence. I could hardly look at Leah that Sunday morning because I didn’t want her to see the pain and confusion in my eyes – it wasn’t supposed to be like this – not when so many people were praying for us.

BEFORE:
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AFTER:
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I wanted so desperately to cry or scream, or both, but how could I?

I was my child’s sole carer – I had to hold it together for her sake.

I felt like I was drowning in a sea of unexpressed emotion.

I felt so alone during those early weeks on the transplant unit, the unit was short staffed so the nurses were very busy and rarely had time to talk.

At that time there was extra infection control measures in place and there was temporarily no parents room so I had very limited contact with other parents – we were in lockdown.

Two weeks previous Leah & I had been at Portstewart Convention, laughing & chatting, surrounded by friends. Now here we were in Bristol, surrounded by strangers and there was no opportunity to laugh or chat with others.

Visiting was restricted in the Transplant Unit. Leah was allowed three named carers – these were myself, Horace (her dad) and Nic (her boyfriend), but neither of them were in Bristol.

Nic was arriving for her third week and we couldn’t wait.

On his first day he filmed me shaving Leah’s head, as her hair was coming out in clumps.

On Nic’s second day I wandered down town in a daze, unused to this freedom. I discovered a beautifully restored Methodist Church in the middle of the shopping precinct, built in 1739.

Wesley’s New Room

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I went in and looked around. There was a quiet area with a Bible for people to pray and read.

I sat there and wept and silently cried out to God “I never knew it was going to be this hard.”

I spent time there in the quiet stillness.

The smell of oldness and wooden pews was a welcome contrast to the smell of the actichlor that was used to clean everything on BMT.

I picked up the Bible and turned to Philippians and read chapter 4 verses 6-7Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.”

I felt the peace of God flow over me, I still felt weak but I could feel His strength in my weakness.

I left that Methodist Chapel with my soul somewhat restored.

I wrote the following in my diary around that time “Maybe the real miracle of healing is the one that takes place in our hearts and enables us to cope with our situation.”

Praying for a miracle?

Praying for a miracle?

I found this really helpful essay on praying for miracles…….

“It is one thing to be asked to pray for another person. I’m happy to do it. I want to do it. I must admit, though, I am not always faithful to do it. However, it is another thing to be told what to ask God for in the situation. I’ve noticed that often requests for prayer come with specific instructions on how to pray. I call it a “please pray for my predetermined positive outcome” request.
And while I’m questioning our accepted methods of requesting prayer, I’ve got to ask, why do we seem to make it our goal to get as many people as possible praying toward our predetermined positive outcome? Is it that we think God is resistant to doing what is good and right but can be pressured by a large number of people to relent and deliver? Do we think that the more people we recruit to pray for the same thing will prove our sincerity or improve our odds?”

Click here to read more Praying Past our Preferred Outcomes