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 Reality, Parenting 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 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.

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.

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.

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.

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.

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

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.

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

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.

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.

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

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.

 

Love Notes

Leah and Miriam 2005

Today I was unpacking a bag of stuff that came down from our old house and I found another of Leah’s “love notes”.

She wrote it to me in 2012, when I was very upset about something that had happened.

In it she quotes Psalm 9:9-10

“The Lord defends those who suffer; he defends them in times of trouble. Those who know the Lord trust Him, because He will not leave those who come to Him.”

Then she writes some beautiful words of encouragement, regarding the situation that I was distressed about.

Of course, when I found this note, all I could do was cry and sob my heart out.

How I miss Leah’s love notes, her timely hugs and her words of encouragement.

Yet, I know it is better to have loved and lost, than never to have loved at all.

I am also mindful of how blessed I am to have a husband and four children.

I am blessed that I am loved.

Simon, Miriam, Rachel and Leah,
October 2004

I am mindful of how blessed we are as a family, to have had Leah in our midst for sixteen precious years and 16 days.

I am so blessed by each little note that I find, that reminds me of Leah – not that I need reminding – and the part that she played in our family.

She was my flesh and blood, the one whom I carried in my womb for nine months, felt every kick, birthed into this world, fed at my breast, gazed into her Moses Basket to check she was still breathing, shopped for, cooked for, loved with a Mother’s love and reluctantly handed back to the One who loves her with a perfect love.

Parenting brings so very many challenges – no one ever said it was going to be easy. I guess I just didn’t know it was going to be this hard.

How easy it would be to give up on life, to drown in this pool of tears.

However, just as Leah’s response to her situation was “God has a plan for my life“, so it is mine.

My hopes and prayers could be summed up in the words of 2 Corinthians 1:3-4 (NIV)

“Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.”

Three of my Favourite Words

I currently have three words that I really like.

They are – in no particular order – HOPE, JOY, and GRACE.

I don’t claim to exemplify the qualities inherent in the concepts that these words embody, but I would like to think that by focussing my thinking on them, they will then become more evident in my life.

Wikipedia describes HOPE as an optimistic attitude of mind based on an expectation of positive outcomes related to events and circumstances in one’s life or the world at large.

Kay Warren describes JOY as the settled assurance that God is in control of all the details of my life, the quiet confidence that ultimately everything is going to be alright, and the determined choice to praise God in every situation.

John MacArthur defines GRACE as the free and benevolent influence of a holy God operating sovereignly in the lives of undeserving sinners.

Some people criticise modern worship songs and choruses by saying that they are too simple, with not enough depth to them.

I accept that some of the traditional hymns contain an amazing depth of theology, that is lacking in some of our modern worship songs.

However, I think that there’s a place for both.

When I’m in a place of very deep emotional pain, it’s usually not deep theology that I need. Sometimes I need to very simply be reminded of the basic truths of the Christian Gospel.

On several occasions since Leah has died, we as a family have attended a church other than our own, in the hope of being able to worship God, without being engulfed in the inevitable emotion produced by attending the church where our daughter was so involved and where our children have grown up.

It really is impossible however to avoid “grief triggers” completely, so on these occasions I usually find myself crying in whatever church we’re visiting.

On one of these occasions not long after Leah had died, the church where we were visiting was having a family service. The hymns that they sang were very simple – of the “Jesus loves me, this I know” variety. Instead of a sermon, they showed a children’s DVD that taught a simple Bible lesson.

I came away feeling that I had met with God. A full blown sermon could have left me feeling discouraged by my inability to connect with what I was hearing. I was exhausted from grieving and my attention span was very short. Their simple service, aimed at the younger members of the congregation, had been exactly what I needed.

I just needed to be reminded of the basics:

God loves me.

Jesus died for me.

Some day all who love the Lord Jesus will be reunited for all eternity.

Listening to modern worship songs, with their beautiful words, helps me to hold on to these truths on a daily basis.

One of the songs that I’ve been listening to a lot lately is simply called GRACE by Martin Smith:

I was lost when you found me here

You pulled me close and held me near

And I’m a fool but still You love

I’ll be your fool for the King of Love

You gave me wings so I could fly

And gave me a song to color the sky

And all I have is all from you

And all I want is all of you

It’s Grace, grace

I’m nothing without You

Grace, Your grace

Shines on me

And there’ve been days when I’ve walked away

Too much to carry nothing left to say

Forgive me Lord when I’m weak and lost

You traded heaven for a wooden cross

And all these years You’ve carried me

You’ve been my eyes when I couldn’t see

And beauty grows in the driving rain

Your oil of gladness in the times of pain

Your Grace, grace

I’m nothing without You

Grace, Your grace

Shines on me

Grace, oh grace

I’m everything with You

Grace, Your grace

Shines on me

 

The Importance of Hope

This was it – the big day – Thursday 1st August 2013 – Leah received her bone marrow transplant. At 5.30pm Leah received four bags each containing 77ml of Simon’s good quality bone marrow via a PICC line in her arm. She had been very unwell in the week preceding this, but our morale had got a boost the day before, when we were upgraded to a lovely ensuite room on the Transplant Unit.

Leah became even more unwell in the days following her transplant, as the full force of her chemo took effect – we had already been warned that this would happen, but it was still very hard to deal with.

In my diary on the 1st August ’13 I wrote:

“Some people thought that Leah would be healed through prayer and at one stage I wondered about that too. I kind of thought that prayer would put her in a protective bubble so that she wouldn’t experience any of the really bad side effects or complications of her treatment – looks like I was wrong.
Maybe it’s a bit like what Joni Eareckson Tada said when someone told her ‘If you had enough faith, you would get out of that chair and walk.‘ and she replied ‘It requires more faith for me to sit here and smile at you than it would to get out of this chair and walk!’“

Then I wrote that I had been reading in Philippians in my Bible that morning and was encouraged by these verses:

Philippians 1:12 (NIV)

“Now I want you to know, brothers and sisters, that what has happened to me has actually served to advance the gospel.”

And Philippians 4:4-7 (NIV)

“Rejoice in the Lord always. I will say it again: Rejoice! 5 Let your gentleness be evident to all. The Lord is near. 6 Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”

I also wrote:

“Maybe the real miracle of healing is the one that takes place in our hearts and enables us to cope with our situation.“

I know that I’ve written about some of this in older blog posts and I apologise for repeating myself. To be honest I need to hear all of this again – I need to be reminded of these lessons.

Grief is a struggle, it wears me down, day after day. Sometimes I need to be reminded of how God has carried me through past difficulties.

The following is one of my favourite verses of scripture. The word hope has become very important to me. It’s not a word that I ever thought much about before.

Lamentations 3:21-25 (NIV)

21 Yet this I call to mind
and therefore I have hope:
22 Because of the Lord’s great love we are not consumed,
for His compassions never fail.
23 They are new every morning;
great is Your faithfulness.
24 I say to myself, “The Lord is my portion;
therefore I will wait for him.”
25 The Lord is good to those whose hope is in him,
to the one who seeks Him;

One of Horace’s sisters sent us a plaque of the word hope when we were in Bristol – I always hung it where Leah could see it. Miriam has it hanging in her bedroom now.

When we were leaving Bristol Leah asked me to buy her a packet of ‘post it notes‘. She wrote Bible verses and encouraging phrases on them and posted them around SAMs House before we left – this is one of them that was photographed after we left and sent to me by another oncology mum. Each word begins with a letter in the word hope.

The Dalai Lama XIV is quoted as saying

“No matter what sort of difficulties, how painful experience is, if we lose our hope, that’s our real disaster.” 

I think that this is incredibly true.

The word ‘hope‘ occurs 174 times in the New International Version of the Bible, with 94 located in the Old Testament and 80 found in the New Testament.

Without hope, there would be no motivation or strength of will to withstand adversity. There would be no long term goals, no direction, no comfort. Hope enables us to believe in a future that will be better than the present, whether in this life or the next one.

We must always hold onto hope, and we must encourage hope in those around us too.

This song is a real “golden oldie” and is probably quite basic compared to all the modern stuff like Hillsongs and Chris Tomlin etc but I have always loved it because it’s based entirely on Lamentations 3:22-23.

Solitude

“Solitude begins with a time and place for God, and God alone. If we really believe not only that God exists but also that He is actively present in our lives – healing, teaching, guiding – we need to set aside a time and space to give Him our undivided attention.”
Henri J Nouwen

“Let all that I am wait quietly before God, for my hope is in Him.”
Psalm 62:5 NLT

Do not be afraid; do not be discouraged,

Leah is quite sedated today but when I speak to her she opens her eyes & will often indicate ‘yes’ or ‘no’ by nodding or shaking her head.

The Doc on duty is “old school” and the last time he spoke to me he was so blunt and pessimistic about Leah’s chances of survival that I had a very sleepless night – my ONLY sleepless night since Leah’s admission as I am quite practiced at sleeping in a hospital environment.

Therefore I was not looking forward to what Dr KillJoy had to say to me today. I certainly don’t want any Dr to give me false hope, I just don’t want them to take away hope completely and thankfully today he didn’t.

None of the samples taken from Leah’s lungs on Monday have grown any bacteria, viruses or fungi so the Docs have now concluded that her respiratory failure has been caused by inflammation in her lungs not infection, but this is still a complication of transplant.

They are now giving her mega doses of intravenous steroids. They have also decided to defer the immunoglobulin and I have been given a few different reasons for this – personally I think it’s because doctors differ!

Today’s Doc says that Leah’s condition is static – that in itself is good news – that nothing major has gone down hill since yesterday. He says that if there is going to be a positive response to the steroid therapy it will take at least 4 or 5 days – so let’s keep hoping and praying.

I’m going back in to Leah now to play all those beautiful faith filled songs that she loves to listen to. Thank you everyone for your lovely messages of support.

Every day as I head into ICU I try to fix my mind on one Bible verse that will give me the strength to keep going – this is today’s verse –

“Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”
Joshua 1:9

Fresh hope

Today’s ICU consultant finally condescended to speak to me @ 6pm & I’m not convinced that I was much wiser afterwards but at 6.30pm along came a knight in shining armour – our very own lovely haematology consultant who has been off since last Thursday.

He proceeded to spend a half an hour with me having a full & frank two way conversation. As the Docs are now inclined to think that Leah’s lung problems are more likely being caused by inflammation rather than by infection he thinks that it’s worth treating her with immunoglobulin & he recommends that this be started tomorrow – good to hear that we haven’t run out of treatment options