Let me be Singing when the Evening comes.

My baby asked for a shopping trip this week. She’s 11 and has never liked being referred to as “my baby”.

My Mum referred to me as her baby until dementia robbed her of her faculties a few years before her death in 2008. I liked this term of endearment.

Miriam and I both tried on shoes in New Look and then she tried on clothes in Primark.

She looks taller than me, but she isn’t really!

Since Leah was a toddler she absolutely loved shopping and would never have allowed us to go shopping without her.

We still find ways to include her – we went to the gardening section in one of the Pound Shops and Miriam chose some items for Leah’s grave.

On this occasion Miriam chose a solar powered butterfly and a dragonfly. She also picked a shepherds crook (with a butterfly inset), on which we can hang things, like sun catchers.

I was glad when she chose a shepherd’s crook – it reminded me of the the 23rd Psalm and the Good Shepherd.

When the shops had closed up for the night, we headed over to the cemetery to place our purchases on Leah’s grave.

I suppose there was a time when visiting a cemetery in the dark would have seemed like a scary thing to do. Not now though – how could the place where we left the body of our beloved Leah ever seem scary?

We arranged our purchases with the light from the torch on Miriam’s mobile phone. Then we talked about the view and commented on the attractive variety of solar lights/decorations on some of the nearby graves. Surprisingly, it feels quiet and peaceful in the cemetery at night.

The curvy string of lights is the Foyle Bridge across the river in the distance.

After this it was time for the obligatory trip to McDonald’s.

Inwardly I reflected on the fact that it’s two years this past week since our very first visit to Belfast City Hospital.

Two years since we left behind the familiarity of our local hospital and faced all that was new and scary and unfamiliar.

Two years since a doctor we had only just met, told us things about our daughter’s diagnosis and prognosis that no parent ever wants to hear.

His phone call the previous week had told us that Leah needed a bone marrow transplant, but by the time we’d finished our face to face meeting with him, it seemed as if it was actually a miracle that our daughter needed.

For weeks afterwards a little voice inside my head kept saying “This is too much.” and another voice would quickly respond “But He is enough – God will get you through this.”

On Tuesday the 24th April ’13, before we left the house to go to Belfast City Hospital, I posted on my Facebook page, some words from one of Matt Redman’s songs that was so special to Leah and I:

“The sun comes up, it’s a new day dawning
It’s time to sing Your song again
Whatever may pass, and whatever lies before me
Let me be singing when the evening comes”

When we arrived home that evening my heart was breaking.

I wrote underneath my earlier Facebook status that if I didn’t have God in my life to help me, I certainly wouldn’t have the strength to still be singing.

Mummy They are Coming to Visit Us

By early February 2013 Leah was having weekly blood tests. She had also had her first outpatients appointment at the Sperrin Unit – our local adult Oncology/Haematology Department.

The staff who looked after us there were absolutely lovely. Our consultant there phoned the paediatric haematologist in the Royal Belfast Hospital for Sick Children to discuss Leah’s case.

Then he rang me to say that she had told him that Leah’s blood results weren’t consistent with any nasty bone marrow diseases. I didn’t believe her. I didn’t tell him this of course.

I recorded my fears in my diary and voiced them in my prayers. When I was on my own I cried a lot.

I reminded God that I had always hated the scary rides at the FunFair. I didn’t like adventure or risk taking – I didn’t even particularly like going away on holidays.

I just wanted to live a quiet life with my family, going on picnics, having Sunday lunch together and playing board games.

I also pointed out to God that a lot of the things that were happening to me were far removed from the blueprint that I had designed for my life. I was feeling way out of my depth.

However once Leah was diagnosed on the 19th April 2013 I knew this wasn’t something that I could get through in my own strength, I had to rely on God to get me through this.

One of the things I remember muttering under my breath at various times after Leah was diagnosed was “This is too much but HE is enough.”

So many times along the way since then He has provided for our needs by sending people to minister to us.

We received Leah’s diagnosis via a phone call on a Friday and we all had to go to the City Hospital in Belfast on the following Tuesday.

On the Sunday Leah said that some of her leaders from L.O.S.T. (Limavady Outreach and Service Team) wanted to visit us and wanted to know what time would suit? I replied “Leah, tell them no time suits.”

A while later Leah told me that one of the leaders had messaged her with a specific time and wanted to know if that would suit. I replied again “Leah, tell them that no time suits.”

Leah just looked at me and said “Mummy they are coming to visit us.”

Sure enough, a short while later, three people, two of whom I had never met before, arrived at our house.

They spent some time with Leah and my husband and me, talking about the devastating news that we had just received and the hospital appointment that we were facing that week. Then they prayed with us.

Before leaving, one of them said “Thank you for inviting us.”
I laughed and said “I didn’t invite you.”

Do you know something? Since receiving that awful phone call on the Friday, delivering Leah’s diagnosis, they were the first people who had come to our house to minister to us and pray with us. We really needed them and we really appreciated their visit.

It taught me something too. If I know that somebody is in bother and I feel an urge in my heart to visit that person, then I would rather follow the leading of my heart and take the risk of getting it wrong, than ignore the prompting of my heart and miss an opportunity to minister to somebody in great need.

A Longing Fulfilled

“Hope deferred makes the heart sick,

but a longing fulfilled is a tree of life.”

Proverbs 13:12 NIV

Leah

Seventeen years ago on the 31st December 1997 at approximately 8.30am Leah Alanna Whyte was born in Altnagelvin Hospital, weighing 9lbs 3oz. Her sister Rachel, was three and a half years old.

We hadn’t chosen for the gap to be this big. Leah was conceived while we were having investigations for secondary infertility.

Leah was what the Bible calls “a longing fulfilled“.

If she had been a boy she would have been named Samuel, after the Old Testament story of Hannah, who had longed and prayed for a baby.

Leah

I have always adored babies. As a child growing up I imagined that I would be married by the age of twenty five and then I would have six children. When they had grown up, I imagined that I would become a foster parent, to ensure that my house was always filled with children.

Hmmmm………..somewhere along the way, reality set in.

For starters, by the time I was twenty five, I was conspicuously single. I had just come out of a three and a half year relationship with the man I had thought I was going to marry. My dreams lay in tatters on the floor.

It is good to have plans.

It is good to dream dreams.

However the Bible says

“Many are the plans in a person’s heart,
but it is the Lord’s purpose that prevails.” Proverbs 19:21 NIV

Many years on, I hope that I’m learning to be more like Mary, the Mother of Jesus, when she said:

“Behold the maidservant of the Lord! Let it be to me according to your word.” Luke 1:38 NKJV

Having one child did not lessen my desire for another baby. If anything it intensified it – now I really knew how wonderful it was to be a parent.

I was so excited about being the mother of two children. When we used to pack the car for our regular trips to stay with my mother in Co. Meath, she used to tell me on the phone “I can’t wait to see your girls.”

Rachel and Leah, June 1998

I used to savour that word “girls” – how I loved the fact that it was plural. I used to gaze in wonder at the two child seats in the back of our car and I felt as if my heart was going to burst with joy.

Six months later I was happily pregnant with baby number three – Simon.

A few years later along came a very pleasant surprise – Miriam.

Miriam

When Chris De Burgh’s daughter Rosanna was born he wrote this beautiful song about her.

It sums up how I felt this day seventeen years ago and indeed how I feel about each one of my “babies”.

“For Rosanna”

This is for Rosanna, sweet girl of mine,
A song for the baby who changed my life,
I’ll never forget when I saw you first,
I thought that my heart would burst,
With the love that I have;

As I watch you sleeping in here tonight,
And I hear your breathing so soft and light,
I cannot believe all the things that I feel,
When I hold you next to me,
It’s the love that I have;

Oh how my heart it is shining,
Oh how my heart it is shining,
Oh how this heart is shining through,
With the love that I have;

And as you are growing from baby to child,
I share the wonders that are in your eyes,
And I am amazed at the way you change,
All according to the plan,
And the love that I have;

And when you are older you will go away,
You’ll see injustice and you’ll see pain,
But never forget that I’m always there,
Like a shadow by your side,
With the love that I have;

Oh my love, you have your mother’s eyes,
And when I see you laugh, you have your mother’s smile,
And you are mine all of my life,
You are mine, all of my love,
You are mine, blood of my blood,
You are mine;

Oh how my heart it is shining,
Oh how my heart it is shining,
Oh how my heart it is shining through,
With the love that I have.

Facing the past

This morning I had an appointment at Occupational Health at my local hospital. My route back to the car park took me past the Haematology/Oncology Outpatients Department that Leah attended for the first half of 2013.

I had never been back there since Leah died. I don’t want to have any ‘no-go’ areas in my life, so I knew what I had to do – I went in and sat trembling for 10 minutes in the waiting area. I chose a seat facing where Leah had sat beside me on our first appointment there on Wednesday 23rd January 2013.

On Leah’s 15th birthday – Monday 31st December 2012 – I had taken her to our GP with what I thought were some relatively minor complaints. Thankfully the GP did a blood test.

My GP phoned me on Wednesday 2nd January to say that Leah’s blood was very abnormal and the haematologist was very concerned and asked me to bring Leah straight down to the Health Centre. I told her that we had a similar scare over a blood test when Leah was a toddler and it came to nothing, so I didn’t see any need for people to panic. My GP said that I was making her feel better. Leah had eight blood tests that day.

The GP phoned me the next day to say that there was no evidence of leukaemia in Leah’s blood but her blood test results were still very abnormal. She said that Leah would need weekly blood tests and the haematologist would be keeping a close eye on things.

A few weeks later I arrived home from work to the news that Leah had an “urgent” appointment at our local adult haematology/oncology clinic. I did my best to contain my anxiety and told myself that this was really only a routine precaution just to keep an eye on things in order to out rule anything serious.

As the two of us sat waiting together on Wednesday 23rd January, a nurse bounded towards us and cheerfully asked “Are you waiting for chemo?”

Well, I nearly lost my life.

Outwardly I just shook my head and she went away.

Inwardly I wanted to scream “How dare you think that my child will ever be sick enough to need chemotherapy? How dare you suggest that my beautiful girl will ever lose her lovely hair?”

The nurse had asked the question in the same vein as someone might ask if you wanted sugar in your tea.

I felt like I had unravelled inside. I did not wish to imagine a scenario whereby our child would EVER be receiving chemotherapy.

When we were finally called in for our appointment that day, I explained to our haematology nurse specialist what had happened and how traumatic it had been. She quietly replied “I will take care of that.”

The remainder of our appointment went very well as both our nurse and our consultant were very mindful of Leah’s emotional needs as well as her medical needs.

How naive we were back then though, clutching at straws, hoping and praying that these appointments and tests were unnecessary precautions.

It was the 19th April ’13 before Leah finally received her diagnosis and our naivety rapidly evaporated.

When I arose to leave Oncology/Haematology Outpatients this morning I knew that I had faced another difficult place and conquered another “first”.

I still need to arrange to go back another day and visit the treatment area, but the waiting area was enough for today.

 

We heard you were coming 💝

Today I went to visit a very dear friend on the Sperrin Haematology/Oncology ward in Altnagelvin Hospital. Leah had two admissions there prior to going to Bristol for her transplant and was really well looked after.

As I walked through the door of the South Wing of the hospital today my tears started flowing and I wondered if I had made a big mistake in going there.

As I walked up the stairs and down the corridor, everything was just as I remembered it, all the familiar landmarks, and everything reminded me of Leah.

By this stage I was in no fit state to visit anyone, but felt I couldn’t turn back as my friend was expecting me.

I was relieved that the entrance to the ward was open as I wasn’t capable of speaking into the intercom. As I approached the nurses station a lovely nurse turned to me and said “We heard you were coming. This must be so difficult for you. We remember Leah.”

Then she took me away to sit in a quiet corner and we talked together about Leah’s illness journey and I showed her some photos of Leah taken in Bristol and after that at Christmas.

The nurse brought me a drink and when I was composed she took me to speak to the ward sister and we reminisced about Leah sitting her GCSE modules on the ward and some other happy memories.

Then I went to visit my friend and had a lovely time with her.

Sometimes there is healing in facing painful memories head on and being enveloped in the loving care of those who God provides to minister to us on this journey.

The Health Service is far from perfect and I have seen the good, the bad and the ugly, but today I thank God for the very many kind, caring staff who made Leah’s and my journey that bit easier because of their compassionate hearts.

God’s Provision

Leah’s first blood test was on the 31st December 2012 and she did not receive a final diagnosis until the 19th April 2013.

Paediatric myelodysplasia with monosomy 7 is quite rare, occurring in approximately two per million children and it can be quite difficult to diagnose.

During the time that Leah was having investigations we were told that our approach was to be one of “watchful normalisation” i.e. we were to keep Leah’s life as normal as possible but at the first sign of an ache, pain, cough or cold we were to phone the 24hr helpline at the Sperrin Oncology/Haematology Unit at our local Altnagelvin Hospital immediatly.

If Leah needed to travel overnight beyond the jurisdiction of our local hospital I was to send written instructions with her to ensure that whatever hospital she was taken to would immediately phone the Sperrin Unit for advice on her care.

Leah was scheduled to go on an activity weekend with the Girl’s Brigade to the Share Outdoor Activity and Adventure Centre in Lisnaskea in Co. Fermanagh exactly seven days after she received her diagnosis. I checked with our local hospital consultant what exactly I needed to put in the letter that would go with her. He expressed some concern about her going. I said that she had been looking forward to it for weeks, especially since she had to drop out of her silver Duke of Edinburgh hike because of her severe neutropenia. I reminded him of his stated policy of “watchful normalisation“. So then he said “well I suppose there would be no harm in her going and watching the other girls taking part.”

I remember that as the bus pulled away from the church on Friday 26th April another parent said to me “Don’t be worrying, Leah’s in good hands.” and I replied “I’m not capable of worrying because I’m still in shock from her diagnosis – I can’t even think straight.”

Leah came home from the GB weekend on Sunday and happily informed me that she had PARTICIPATED IN EVERY ACTIVITY. I nearly had to be worked with.

As the days and weeks went by and I realised how weak Leah’s immune system really was and how risky it had been for her to go on that weekend and take part in every activity, especially when she was geographically so far away from a specialist haematology/oncology unit if she had become unwell, I felt terrible for having exposed her to such danger.

Now however I thank God that Leah got to go and have fun and be with some very special people at a time when she was dealing with the worst possible news she would ever receive. Leah had been in the Girl’s Brigade since she was three years old and it was such a big part of her life. I know that the GB weekend in the Share Centre meant so much to her. I look back now at so many things that happened along the way and marvel at how, in the midst of Leah’s illness and our distress, God was always providing what was needed.

Obviously we would have much preferred if Leah had been healed, but that choice wasn’t ours to make. As Rev Craig said at Leah’s funeral, some things in life will always remain a mystery. However, the sense of timing and of God’s provision in Leah’s short life continues to amaze me.

“And my God shall supply all your need according to His riches in glory by Christ Jesus.”
Philippians 4:19

Some days are just harder than others

Today was my younger daughter’s appointment at the fracture clinic in Altnagelvin Hospital.

I explained to her before we left the house that Mummy feels sad when she goes near the hospital because it brings back so many memories & not to be worried if I started crying.

The easiest place to park is opposite the South Wing where the Sperrin Oncology/Haematology Ward is, where Leah had two admissions & sat two of her GCSE modules – & got an ‘A’ in both.

I managed to park, walk up the steps & enter the hospital without shedding a tear.

I was just starting to relax when it hit me – today is the 20th of February……..how come I never thought of this before?

Wednesday 20th February 2013 started like any normal working day – I got up, got dressed and went to work.

I never suspected as I got dressed that morning that the clothes that I was putting on me would be what I would sleep in that night – and the next night too.

In fact it was Friday lunch hour before I managed to shower and change.

Leah had been having hematological investigations since the day of her 15th birthday – New Year’s Eve 31st December ’12.

By Wednesday 20th February ’13 Leah was as yet undiagnosed.

A few friends had been asking me for weeks to meet them for a meal and I had kept putting them off.

I was worried about Leah and I didn’t want to leave the house unnecessarily in case she took unwell when I wasn’t there.

Wednesday 20th February was the day that I had finally agreed to meet up with them for a meal after work.

We went to a really nice Chinese restaurant called the Mandarin Palace.

We chatted and laughed and caught up on each other’s news – it felt good to have a bit of rest and relaxation.

I had just swallowed the last bite of dessert when my mobile phone rang – it was my husband “I think you had better come home, Leah’s not feeling well.”

Leah was severely neutropenic and her consultant had me well warned that if she ever became unwell that I wasn’t to waste time taking her to the GP or A&E, I was to immediately phone the Oncology/Hematology helpline.

We paid the bill, hugged, wished each other well and said goodbye.

I went home and assessed Leah’s situation, spoke to the staff on the Sperrin Ward and was asked to bring her in.

Although it was midterm, Leah filled her overnight bag with school work – she wanted to make the best possible use of any time spent in hospital.

I was as yet totally unaccustomed to this new way of life and I didn’t pack even as much as a toothbrush for myself.

The nurse who was cutting off my younger daughter’s plaster today didn’t notice my distress at first.

Then he tried to give me directions to X-ray but I got totally confused.

You would think that I should know my way round my local hospital by now, especially when you consider how much time I’ve spent in it.

Its hard though when your eyes are filled with tears & your mind is full of memories.

The nurse was very caring & he took me into a side room and talked to me until I had regained enough composure to continue.

My young daughter got her X-ray quite quickly & we returned to Clinic 3.

A pleasant young doctor told her the good news that her arm was well healed and no further treatment was required – what a relief.

A close friend who works in the hospital then met us for a drink & buns in the outpatients cafe.

After this I dropped my young daughter off for a day of fun and games with some of her school-friends – they are off school for mid-term.

This has been very kindly organized by two of the parents and they have the use of a church hall for the day.

As I pulled up outside Ballykelly Church of Ireland hall I remembered that the last time I was there was to take Leah to “BK Banter” – something she absolutely loved attending – so many memories.

It’s good to have memories – lots of them – some days are just harder than others.