Grief Changes Everything

Grief Changes Everything

ChristmasMeansMore

It’s almost four years now since Leah died and I still struggle with going on a shopping trip  on my own. Whenever possible I shop online or wait until one of my children (or my husband) is available to accompany me. However there are some occasions when I do have to go shopping alone. I try to keep these shopping trips as brief as possible.

In years gone by I loved shopping and my shopping trips often lasted for several hours, but it is definitely now something that I do very much out of necessity rather than for pleasure. Today was one of those days when I headed out alone to get a few bits and pieces. Life has been busier than usual lately, so my youngest and I haven’t had time recently to go on one of our regular joint shopping trips.

As soon as I entered Foyleside Shopping Centre I was immediately drawn to the beautiful sound of children singing. I instinctively moved in the direction of this sound until a choir of Primary School children sweetly singing Christmas songs came into my line of vision. This young choir was surrounded by other shoppers who had stopped to listen and by adoring parents capturing the moment on camera.

In an instant I was transported back to when I was that proud parent and Leah was a young girl in her Primary School choir. Leah loved to sing. Tears blurred my vision as my heart ached with longing to once again hear the sweet voice that every Christmas echoed throughout our house with the words of one of Leah’s favourite Christmas songs:

IT’S SOMEBODY’S BIRTHDAY

by Ian White

Crackers and turkeys and pudding and cream,
Toys in the window that I’ve never seen.
This is the Christmas that everyone sees,
But Christmas means more to me.

Chorus
It’s somebody’s birthday I won’t forget,
As I open the things that I get.
I’ll remember the inn and the stable so bare,
And Jesus who once lay there.
~
Everyone’s out shopping late every night,
For candles and presents and Christmas tree lights
This is the Christmas that everyone sees,
But Christmas means more to me.
~
Christmas morning, the start of the day,
There’s presents to open and new games to play.
This is the Christmas that everyone sees,
But Christmas means more to me.

Leah playing guitar1Dec17

My visit to Foyleside was brought to a swift ending – thirty minutes after I had parked my car I was back in it and driving away. Grief changes everything.

Broken yet Blessed

Broken yet Blessed

Esther's Tree

This morning as I sat having my Devotional Time, I looked up and there across the room I saw it – the beautiful miniature Christmas Tree that Esther Scobie had made us for what would be Leah’s last Christmas. My youngest had decorated the room after I went to bed last night! Little did any of us know in December 2013 that it would also be Esther’s last Christmas.

Tears spilled down my cheeks as I remembered the many thoughtful cards and notes that I received from Esther over the years, but especially during Leah’s illness. It is so hard to say goodbye to the special people in our lives.

Yet how blessed I am to have known Esther and how blessed I am by the many other beautiful people that God has brought into my life – some for a short season and some for the long haul.

Philippians 1:3
“I thank my God upon every remembrance of you”

30 Days of Gratitude

30 Days of Gratitude

gratitude-is-e1479737044884

I love it when researchers start telling us that something is good for us and that ‘something’ is a thing that the Bible has been saying for thousands of years – the importance of gratitude.

Psalm 118:24

This is the day that the Lord has made; let us rejoice and be glad in it.

1 Thessalonians 5:18

Give thanks in all circumstances; for this is the will of God in Christ Jesus for you.

I especially love these words written by Paul while in prison:

Philippians 4:6-7

Do not be anxious about anything, 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 your minds in Christ Jesus.

Here is a link to an easy to read (and understand) research based article entitled How Gratitude Changes the Brain – And How to Make it Work For You.

A few weeks ago I read an excellent article by bereaved mum Angela Miller on her blog entitled A Bed for my Heart called Grateful and Grieving. I posted a link to it on my Facebook page and said that this describes how I feel about the month of December – ‘grateful and grieving’. Grateful for the many blessings in my life, but grieving the loss of our precious and much loved daughter.

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December is not only the time of year when family togetherness is totally emphasized and the empty seat at the table is at its most conspicuous, but it’s also the month in which Leah’s illness first began (2012), the month in which Leah suddenly and unexpectedly became critically ill and was admitted to ICU (2013), as well as being the month in which Leah was born (31st December 1997).

However, as December came closer, I quickly realised that I was more ‘grieving’ than ‘grateful’. I really thought that I had learned how to live with the pain of grief and loss that is my constant companion, but I suddenly found that I was starting to unravel. I was once again crying myself to sleep, grateful for the oblivion that a few hours of sleep can bring. At the same time I was feeling guilty for focussing so much on what I have lost instead of being thankful for all that I have.

Then, I noticed on Facebook that another bereaved mum with whom I’m friends, was doing #TheHappinessDare – 30 Days of Gratitude. I looked up the link that she included on her Facebook post and it took me to this blog post by Jennifer Dukes Lee: The Stubborn Refusal to Give in to Despair — A Dare for All of Us. Jennifer provides a printable list of thirty prompts (which she refers to as 30 Days of Gratitude) to help us count our blessings.

thirty-days

I was immediately drawn to this idea. The only decision for me was whether I would do this publicly every day via my Facebook page or privately in my journal (or both). Having mulled it over for a few days, I’ve decided that I will derive the most benefit from following the prompts privately in my journal. So armed with a pretty notebook, the printed prompts, glue and a scissors, I have put together my own 30 Days of Gratitude Journal and I have it all ready to begin on the 1st December.

This Christmas season I’m going to take time each day to appreciate the gifts that I already have. Perhaps you too would benefit from participating in the 30 Days of Gratitude challenge this Christmas season?

My One Word 2016

My One Word 2016

Genesis 41:1When two full years had passed….”

Joseph had been betrayed by his own family, wrongly accused by his employers, then let down by his fellow prisoners…….and two full years had now passed, during which time Joseph continued to be wrongfully imprisoned. Yet, the surrounding verses in the book of Genesis make it clear that Joseph continued to live an honest, upright life and never wavered in his trust in God.

The story of Joseph has always inspired me, (I wrote previously about Joseph here), but today the verse ‘two full years’ caught my attention. I have never before noticed that there was a two year gap between when Joseph’s ‘friend’ the chief cupbearer, was released from prison and the time when he remembered Joseph’s kindness to him and spoke up on his behalf so that Joseph also was released from prison.

I knew that there was a time lapse, I just didn’t realise that it was as long as two years. It must have felt like a very long time to Joseph, stuck in prison with no letters from home (they thought that he was dead), no emails, no texts, nothing. How hard it must have been for Joseph to keep his faith and trust in God and to continue to believe in God’s plan for his life, but apparently he did.

This week marks two years since we said goodbye to our beloved Leah. There has hardly been a day over this past two years that I haven’t cried and mourned as I yearn for Leah’s presence in our lives. I have struggled at times to believe in God’s plan for my life. The emotional pain has frequently felt overwhelming.

Around this time last year I wrote about the My One Word challenge and said that I had chosen the word HOPE:

I think that HOPE has been a fitting word for 2015. I think that I as a person and that we as a family have made progress in the areas that I had hoped for. Over this past Christmas and New Year, we have had some lovely times together with the people that we love, always being mindful of Leah’s absence and the legacy of her beautiful life.

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We ‘celebrated’ Leah’s 18th birthday on New Year’s Eve, by lighting eighteen pink heart shaped candles and getting together with friends and family. We planned to light the candles at her grave, but a very strong wind ensured that didn’t happen, so we lit them at our house instead.

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For Leah’s anniversary this coming weekend we are hosting Sunday lunch for our large extended family at our house – approximately 45 people. The last time that we hosted a get together for our extended family was for Leah’s baptism. Leah absolutely loved these large family get togethers, so this feels like the right way in which to remember her.

My one word for 2016?

CHOOSE

Choose this day whom you will serve……but as for me and my household, we will serve the Lord.” Joshua 24:15

Everything can be taken from a man but one thing: the last of human freedoms – to choose one’s attitude in any given set of circumstances.” Victor E. Frankl (1905-1997,  Holocaust survivor)

Leah taught me an acronym for HOPE:

Hold
On
Pain
Ends

So I thought I would make an acronym for CHOOSE:

Certain
Hope
One-Hundred-Per-Cent
Okay
Support
Encouraged

I’m CERTAIN that whatever 2016 holds, that God will be with me, giving me grace and strength. Matthew 28:20

We do not grieve as those who have no HOPE. 1 Thessalonians 4:13

When I’m fully committed to something, I try to give it my ONE-HUNDRED-PER-CENT. Colossians 3:23

It’s OKAY to have bad days and to feel like giving up sometimes. Matthew 11:28

Without the SUPPORT of family and friends, I would never have made it this far. Philippians 1:3

Despite all the sadness and the heartbreak, I feel ENCOURAGED that God isn’t finished with me yet! Proverbs 3:5-6

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The Bells of Christmas

The Bells of Christmas

Christmas bells

Christmas Eve – this time two years ago the rest of the family moved in to our new house. All six of us slept together under the one roof for the first time in six months. I went to bed feeling so happy, so content, so ‘full’.

Within four days the bells of Christmas had been replaced by the ‘bells’ of the monitors to which Leah was attached in the Intensive Care Unit where she had been admitted as a result of respiratory failure.

Leah in ICU


Every time Leah’s blood oxygen levels dipped, the monitors chimed and my heartbreak intensified. For the first five nights I slept in a chair beside Leah. During one of these nights there was a medical crisis and the monitors alarmed almost continuously. In the morning the staff looked at me in amazement and asked me how I had slept through the whole commotion. I shrugged my shoulders and gave a vague answer. In actual fact, I had been well aware of what was happening but I had kept my eyes closed and had held my daughter’s hand (whenever I wasn’t in the way) while praying silently. I was worried that if the staff knew that I was awake that they would put me out of the room and then I wouldn’t be there to comfort Leah.

Many days as I sat quietly holding Leah’s hand, with her favourite music playing softly in the background, the chimes of the monitors would intrude unpleasantly on our thoughts – reminding us of what we didn’t want to be reminded about – that Leah’s life hung in the balance.

Finally on the 16th January 2014, when Leah had been transferred to the Children’s Hospice for her end of life care, a monitor started to sound an alarm as the life seeped slowly from Leah’s body – swiftly and silently the doctor pressed the mute button on all of the alarms. We didn’t need them now, as sadly for us, the time had come to let Leah go peacefully into the waiting arms of her loving Heavenly Father.

Now I live and ‘celebrate’ Christmas in a dichotomy – one part of me is overwhelmed with the sadness of Leah not being here, yet the other part of me celebrates the birth of the Christ Child and the many blessings with which God has enriched my life.

Each one of our four children is a blessing in my life. My friends and my family who surround me with love and comfort are a blessing. Having a job that I love and work colleagues whose company I enjoy is a great blessing. I have a beautiful house which is a blessing.

Let the words of Chris De Burgh be my Christmas greetings to you, my faithful readers:

The Bells Of Christmas

If you know someone who is lonely this Christmas,
Reach out a hand and open the door,
Bring them inside in the spirit of Christmas
And show what lies in store;

If you know someone who’s forgotten that Christmas,
Will always shine in the eyes of a child,
Open their hearts to the memories of Christmas
And take them back in time;

So have a very Merry Christmas everyone,
Celebrate the coming of the newborn son,
Everywhere this happy day we have begun,
To ring the bells of Christmas;

Let the light that shines with the wonders of Christmas,
Fill every heart all over the world,
Let us believe in the spirit of Christmas
And dream of peace on earth;

So have a very Merry Christmas everyone,
Celebrate the coming of the newborn son,
Everywhere this happy day we have begun,
To ring the bells of Christmas;

Have a very Merry Christmas everyone,
(Ring the bells)
Celebrate the coming of the newborn son,
(Merry Christmas)
Everywhere this happy day we have begun,
(Ring the bells)
To ring the bells of Christmas,
(Merry Christmas)
Ring the bells, ring the bells!

 

Parenthood ~ a poem by Katie Dalgoutte

Parenthood ~ a poem by Katie Dalgoutte

Henry the Handsome and I

On the 20th December 2013 I shared another of katie Dalgoutte’s very moving poems on my Facebook page. Katie lives in the UK and her handsome son Henry was diagnosed with a grade 3 ependymoma ( brain tumour) at the age of 13 months old in January 2013. Henry is currently doing very well.

Katie speaks for so many of us “oncology mums” with her poetry. I previously published her very powerful poem Imagine on this blog.

Katie’s poem ‘Parenthood’ describes exactly how I was feeling when I posted it on my Facebook wall that day in December 2013. Sadly eight days later, Leah was critically ill in Intensive Care.

Parenthood

Being a parent is such a privilege and joy,

Such years of fun and love to enjoy.

But sometimes with joy comes worry and strike,

A fear that threatens your beautiful child’s life.

We hold on to the reigns, but we lose control,

We are forced to take on so many roles.

Today I’m a counsellor, I’ll comfort my child,

I’ll provide cuddles when they’re going wild,

I am a physio, helping move on,

Support them in learning skills that have just gone.

I am a researcher, searching for answers,

Praying for cures for these horrible cancers

I am a nurse handing out drugs,

When all I once knew was dealing in hugs.

I am a doctor using medical words,

Vocabulary not long ago I’d never heard

I am a dietician praying that he’ll eat,

Avoiding sickness and nausea becomes a treat.

I am a therapist encouraging speech,

Loving and nurturing, trying to teach.

I am a psychologist, doing my best,

When inside myself I’m feeling distressed.

I am an actress pretending to be

A strong happy parent, with no cracks to see.

I am a clown creating laughter,

I’ll strive to make memories today and hereafter.

But most of all I’m still just a mother

Living each day at a time.

All I want in life is for him to be here

My child, my world, my life, my all.

By Katie, Henry’s mummy. 16th October 2013 ©

 

Katie Dalgoutte is an amazing person, as are so many parents of very ill children. Katie has set up a charity called Henry’s Holiday Help. It is a small charity that provides local children (Bury St. Edmunds area) diagnosed with cancer from 2013 onwards, with some money towards a holiday to enjoy during or after treatment.

During this season of goodwill perhaps you would like to make a donation; their gofundme page can be found here. Alternatively, you can contact Katie at henrysholidayhelp@gmail.com or go to the facebook page https://www.facebook.com/HenryTheHandsomesJourney/.

 

When Holidays Hurt ~ A Book Review

When Holidays Hurt ~ A Book Review

To help me cope with Christmas, and all the emotions that it brings since Leah became ill and died, I treated myself to a new book on the recommendation of another bereaved Mummy.

Actually I love books, so it doesn’t take much to persuade me to buy a new one.

This past year during Lent, our minister suggested that we give up something that we would REALLY miss like Facebook or – horror of horrors – Amazon – I chickened out I’m afraid.

Maybe some day.

Cleaning vs reading

 

My recent purchase is called WHEN HOLIDAYS HURT by Bo SternBo is a Mum of four, whose husband was diagnosed with terminal amyotrophic lateral sclerosis (ALS), a form of motor neurone disease (MND).

The description of the book immediately drew me in:

Bo Stern has spent the past two Christmases struggling to connect with the joy of the season. As she has watched her husband, Steve, struggle with terminal ALS, Bo has quietly felt her spirit for the season fade and has noticed countless others suffering the same way.

When the book arrived I wasn’t disappointed. It’s hardback, compact and pleasing to the eye. More importantly, the content is ministering to my heart.

Book

Here is what I read today:

Bo doesn’t just cover the Christmas Holidays, she has readings for the New Year, Easter, Weddings and other significant days. At £7.99 Sterling this book would make an excellent gift for any person of faith who has a hurting heart.

If you would like to read Bo’s story and visit her blog, click here. Sadly, her husband Steve left this earth to go to his heavenly home on July 18th, 2015. Read his obituary here.

Blog Quote Bo Stern

The Heart of Christmas

The Heart of Christmas

The heart of Christmas has a name

In 2008, in St. Jude Children’s Research Hospital in Memphis,Tennessee, a 15 month old little boy called Dax was diagnosed with AML M7 leukemia. After the chemotherapy treatments failed to bring his leukaemia under control, Dax was enrolled in an experimental protocol to undergo a stem cell transplant.

Dax received his first transplant from his mother, Julie’s stem cells. However, the cancer soon returned with a vengeance in Dax’s small body. Again, St. Jude offered another transplant, but unfortunately Dax’s little body just couldn’t beat the disease and he returned home to Washington with his parents in mid-October 2009 to “Cherish Every Moment”.

The doctors thought Dax probably would not live through Christmas. At home with Dax, Julie decided to celebrate one last Christmas with her son. Dax especially loved the Christmas lights on the tree and on the house. Soon the neighborhood began asking why they had Christmas lights up before Halloween? As the story spread, within days the neighborhood and soon the town of Washington was lit up for Dax.

Dax did live to see Christmas day. He passed away on December 30th, 2009.

Singer and songwriter, Matthew West reached out to help after hearing Dax’s story. He wrote a song called One Last Christmas and the song went viral in 2011. I heard about it and thought that it was both very beautiful and very emotional! I shared it on my Facebook page on the 9th December 2011 with the caption “Have the tissues ready.

 

We didn’t need tissues in our family during Christmas 2011, but 2012 was a difficult year for many reasons. In September 2012 we were all devastated when a very close friend of my eldest daughter Rachel took his own life. Rachel was contacted by the person who found him. Rachel immediately phoned me at work. When I had composed myself enough to drive, I collected both Rachel and Leah and we went to this young man’s family home. It was heart-breaking.

On Christmas morning 2012 our youngest child’s pet hamster died, having been attacked by one of our house cats. Miriam loved that little animal dearly and she sobbed for hours. Also on Christmas Day 2012 I developed the worst flu that I’ve ever had in my life and I spent most of the Christmas holidays in bed, shivering, coughing and struggling to breathe.

Sadly I have very few photos taken Christmas 2012. Leah’s fifteenth birthday celebrations over the New Year were also marred by a phone call from our family doctor suggesting that Leah may have leukaemia.

Although Leah didn’t actually have leukaemia, it took months to get the correct diagnosis of a rare haematological malignancy known as myelodysplasia with monosomy 7. On one occasion, when Leah was an inpatient on our local haematology/oncology ward, a doctor told us that all that was wrong with her was constipation and he discharged her home to take Movicol.

Thankfully, ten minutes later a consultant haematologist came along and told us to stay in hospital and he ordered more tests. I’m convinced that Leah would have died – of negligence – if we had listened to the first doctor and gone home. At least we now know that everything that could have been done to save Leah’s life was done.

Leah’s illness entailed her and I spending approximately 20 weeks away from home and family. After having her bone marrow transplant in Bristol Children’s Hospital Leah then got just six short weeks at home. She had one last Christmas – she made it to 8.30am on Friday 27th December 2013 before being admitted to hospital for the last time.

The next time that I returned home was on Thursday evening the 16th January 2014, when I gathered up Leah’s selection boxes, her Terry’s chocolate orange, her Christmas presents and the wrapping paper that she had left strewn around her bedroom. Feeling dazed and numb, I tidied them all away along with her unopened birthday presents, to make room for her white coffin.

The story of Dax Locke, his illness and his last Christmas have been made into a film called The Heart of Christmas.

 

Miriam and I watched this film last night. It is a sad film but it is also beautiful, because it encourages us to “cherish the moment” and to appreciate the truly important things in life – our relationships with those we love.

Since Dax’s death, his Mum Julie has worked tirelessly to support other families with a child going through cancer treatment. She has set up The “Cherish Every Moment” Dax Foundation and has raised over 1.6 million dollars for the St. Jude Children’s Research Hospital where her son received his treatment.

Like me she knows that everything possible was done to save her child’s life, but that with ongoing investment into research, more can be done to improve the survival rates from children’s cancers and to minimise the toxic effects of treatments.  

 

The Greatest Gift

The Greatest Gift

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On the 1st of December I came across this set of 25 downloadable notecards  by Ann Voskamp, extracted from her popular book The Greatest Gift. There’s one for every day this month, up to and including Christmas Day.

Ann Voskamp is also the author of the bestseller One Thousand Gifts: A Dare to Live Fully Right Where You Are which spent sixty weeks on the New York Times Bestseller’s List. I write about my experience of reading ‘One Thousand Gifts’ here.

When I looked at Ann’s daily notecards for Advent and read them, I decided that I would like to share one each day on my Facebook page and Twitter feed.

I’m not sure if any month of the year is particularly easy since Leah died, but December, with its extra emphasis on communal happiness and family togetherness, is especially difficult.

This year, December brings with it the second anniversary of Leah’s final hospitalisation on the 27th December and her eighteenth birthday on New Year’s Eve.

I find that these little thoughts for Advent by Ann Voskamp are just enough to catch my attention and to hold in my head – they are neither too long nor too short. They help me to remember that Christmas is Jesus’ birthday – something that meant a great deal to Leah. Read this blog to find out more about one of her favourite Christmas songs.

I was shopping today – something that I’ve consistently struggled with since Leah died, as she loved shopping so much and was my frequent companion on shopping trips.

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I was shopping in Belfast, the place where Leah and I spent so much time together while attending hospital appointments. Today, when I bought something to put on her grave on her 18th birthday, my tears started to fall once again.

However as I sobbed quietly, I told myself that this wouldn’t be the day when I would lose myself in sadness. I let the tears fall as I walked with my head bowed through the hordes of Christmas shoppers.

I remembered something of what I had read much earlier today. As I walked I gave thanks for the lives of each one of our four children – including the one whose life was cut short, the one who was only given to us on loan.

I prayed and talked quietly to God in my heart and I felt His comfort.

The Empty Chair

The Empty Chair

On the eleventh of November 2013 Horace, Rachel, Leah and I went to IKEA in Belfast to buy some bits and pieces for our new house. Leah wasn’t allowed in public places because of her immunity, but IKEA that Monday morning was almost deserted, so we felt that it was safe for her to come with us. Leah loved shopping.

Ikea trip

It was a challenge to fit both the people and all the purchases into our car afterwards, but my husband is amazing when it comes to packing the car. It comes from years of practice being married to a woman who doesn’t ‘travel light’!

packed car after Ikea

Amongst the items we bought were six folding kitchen chairs. Why did we need six? Because, in 2013, we were a family of six – two parents and four children.

Now, unless we have visitors, one of those kitchen chairs remains folded, unused, in our Utility Room.Folded chair Now that it’s December, we are once again in the season when for many families there is a heightened awareness of the empty chair.

Along with our awareness of an empty chair, we will have Leah’s eighteenth birthday on New Year’s Eve and the second anniversary of her final hospitalisation and her death in December/January.

This morning I read a blog post by John Pavlovitz and he says it better than I could in his recent blog post entitled Holidays and Empty Chairs: 

“The holidays are a time for recognizing our profound fullness, of purposefully dwelling on the abundant overflow we find ourselves in and being grateful.

Our houses and our bellies bulge to capacity and we gleefully overindulge in food and friends and laughter. We fill ourselves to bursting with all the things and the people that make life glorious and make the pain bearable.

This is a season where we inventory our lives and readily acknowledge all that is good and sweet and right.

It is about celebrating presence.

But not for you. Not right now.”

Click HERE to go to his blog and read the rest of this post.