A Sibling’s Grief

A Sibling’s Grief

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A few days ago my youngest child brought home the annual Limavady High School magazine. I took it to bed with me that night to start reading through it. One of the first places I looked was in the creative writing section. Initially, I read an endearing piece written by one of my daughter’s classmates about becoming a ‘big sister’. Then I discovered that my daughter had also written a piece entitled “My Most Memorable Experience”.

As I began to read it I discovered that she had written about her experience of losing her sister. Although I didn’t read anything that I hadn’t already known, it was still very emotional to see her experience of the death of her sister written down in black and white. However, I also felt very proud of her for being able to give her grief a voice and to do so very articulately. She wrote it in the previous school year so she would have been thirteen or at most fourteen when she wrote it.

I have obtained her consent to publish her piece of writing on here, with the aim of increasing awareness of sibling grief. Several adults who lost a sibling when they were growing up, have told me that they felt that the focus was usually on their parents’ grief and that they often felt as if their enormous loss was overlooked.

My Most Memorable Experience

If you have lost someone very important to you, then you already know how it feels. And if you haven’t, you cannot possibly imagine it” – A Series of Unfortunate Events

On the 19th April 2013, my sister was diagnosed with a rare and life-threatening form of bone marrow failure known as Myelodysplasia. Cancer. She needed a bone marrow transplant urgently. We all had to get our blood tested and thankfully my brother was a match. Leah and my mum had to spend 14 weeks in Bristol Children’s Hospital. That meant for three months I was alone with my dad and brother. My older sister was away at university. I pretty much had no one. My dad just about learnt how to tie my hair up and my brother was always on his computer so I was pretty much alone.

Thankfully after the three months of them being in Bristol and me and my dad occasionally visiting when we could, the transplant was successful in curing her Myelodysplasia. I was ecstatic. I was so happy, finally, life would be normal again. We could move into our new house. It would soon be Christmas and we would become a full family again.

Christmas had passed and everything seemed normal. But it wasn’t……On the 28th December, she became unexpectedly unwell and was then admitted to ICU in Belfast City Hospital. She had only just come home and now she’d been taken away from me again.

Me, my dad and my brother had to drive up to Belfast in the middle of the night Wednesday 15th January 2014. When we got there it was eerily silent. I remember my mum taking us up to Leah’s room. I remember her lying there looking lifeless. She couldn’t move, she couldn’t speak, she couldn’t even open her eyes. She was just lying there. I remember crying for hours. Crying until my head was sore. Crying for hours. But I don’t remember it stopping. The last things I remember from that night were kissing her hair-free head and then sleeping on my aunt’s floor, dreading the morning.

The next day was by far the worst of my life. All my family were gathered in the NI Children’s Hospice. It was silent again. No one was ready. No one was prepared to lose her. They had to use two ambulances to transport her from the hospital to the hospice. They moved her into a room there, all of us were gathered around her whilst her favourite playlist of songs serenaded us in the background. I remember clutching onto her hand, while I sat on my aunt’s knee, mentally begging her to hold on. I finally lost that hope and broke down. The tears were streaming down my face. My aunt had to take me to another room because I was having a panic attack. My head was sore. My chest was tight. I couldn’t breathe.

I remember the hospice staff switching off the life support.

I remember hearing the continuous beeping stop.

I remember the moment she died.

The atmosphere was quiet, so quiet that you could nearly hear all of our hearts shattering at once. I would try and describe the feeling to you but I can’t put in words how horrendous it actually was. I would never wish that feeling upon anyone.

The wake was the next few days. They laid her white coffin open on her bed. She was wearing the dress that she had worn to her formal (which was only a few weeks before she relapsed) and some rainbow, fluffy socks that I picked out. We all put something into her coffin, one of the items being her favourite teddy, Ducky. I’d say there were over a hundred people who visited the house in total. The funeral was on Sunday but the only thing I recall is my uncles and cousins carrying her coffin.

The reality is you will grieve forever. You won’t get over the loss of someone you love. You will learn to live with it. You will heal and rebuild yourself. You will be whole again. But you will never be the same again, nor should you want to be. I know I’ve changed. I know I’ll never be the same again but I can’t tell if it’s for the better or for the worse.

Yes, I am angry. Angry because she was so young. I was so young. Sixteen-year-olds aren’t supposed to die. Ten-year-olds shouldn’t have to feel that pain. But I’ve also become stronger……..Sometimes I look up at the night sky and there’s always one star that catches my eye. It always seems the brightest. And I know she’s there, watching over me. img_0313

He Knows the Way that I take

He Knows the Way that I take

 

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As this is a holiday weekend here I’ve had more spare time than usual, so today I decided to take myself to the local woods  for a walk. As soon as I arrived there, I realised that it was during this very week in 2013 that I had walked there with a friend while Leah and Nic had their photoshoot done. Alison Hill did an amazing job of those photos and Leah loved them.

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I was so emotionally fragile at that time (shortly after Leah had been diagnosed) and a walk in the woods with a friend was just what I needed. As all of these memories came flooding back I was glad that the woods were very quiet today. I needed to be alone with my thoughts. As I walked along I enjoyed taking photos of anything that caught my eye:

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When I came to my favourite bench, I sat for a while and studied the photos that I had taken. Most of them were of the path. I reflected on this for a while, then I used my phone to look up Bible verses that mention the word ‘path’. I was somewhat surprised to discover that the word path is used quite often in the Bible. Here are some of the verses I found:

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.

Psalm 16:11 NIV

 

Your word is a lamp for my feet, a light on my path.

Psalm 119:105 NIV

 

Trust in the LORD with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight.

Proverbs 3:5-6 NIV

 

Earlier today I had also read this excerpt from Streams in the Desert which mentions paths:

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After coming home from my walk I looked in my diary to see exactly when I had taken Leah for her photoshoot and what I had written about the event – I had certainly been in a very distressed state that day due to all that was happening. As I glanced over some of my journal entries, my attention was suddenly caught by something I had written on the 5th January 2014 while I was sitting with Leah in the ICU in Belfast City Hospital. Leah’s diagnosis had recently changed from PCP pneumonia to probable pneumonitis. On the 4th January, one of the consultants had taken me aside and had spelled out in words of one syllable what the implications of this new diagnosis were i.e. that Leah was very unlikely to survive. I was still praying and believing for Leah to be healed but as I wrestled with God regarding all that was happening, I had transcribed some words of an old hymn into my journal:

Yea, choose the path for me, although I may not see,

The reason Thou dost will to lead me so.

I know the toilsome way will lead to realms of day,

Where I shall dwell with Thee, O mighty Saviour.

 

There is that ‘path’ word again, all of this serves to reinforce for me the truth of Job 23:10; “He knows the way that I take” and He is with me every step of the way.

 

Tears of joy and tears of sorrow

Tears of joy and tears of sorrow

Today I read the blog post of a good friend and fellow blogger and my eyes were drawn to this photo. She didn’t say which hospital in N. Ireland that the photo had been taken in but my heart was already pounding in my chest and my eyes were filled with tears, before my mind had even formed the words Belfast City Hospital.

Endoscopy Waiting Area BCH

The ICU where Leah was treated for 2.5 weeks before she died had no Relatives Room within the Unit and worse still – from my perspective – no Visitors/Relatives Toilet. Every time (day or night) that I needed to use the toilet, I had to leave the ICU and make my way through the long convoluted corridors of the hospital, to the public toilets in the main Foyer, via the double doors in this picture. These toilets were very busy and in constant use, therefore the hardworking hospital cleaning staff were unable to maintain them in pristine condition, although they were cleaned regularly. I detested using them as I was terrified of carrying an infection back to my immunocompromised and critically ill daughter.

Each time on my return to the ICU I had to ring the bell first at the outer door and again at the inner door, then wait to be granted permission to ‘visit’ my desperately ill daughter, who disliked me leaving her. This was the hardest part, knowing that Leah was waiting on me to return, but not knowing if I would be allowed in, or if I would be asked to wait in the corridor.

I quickly learned that the best thing to do was to restrict my food and fluid intake so that I NEVER voluntarily left ICU – the only occasions that I left were when requested to do so. Unfortunately, due to the policies and procedures of ICU these occasions happened regularly throughout the day. I then sat on a hard plastic chair in the corridor outside ICU, waiting anxiously for that precious moment when I would be allowed back into Leah’s cubicle.

I found that having a cup of hot cinnamon milk for breakfast filled me up and didn’t make me run to the toilet. At lunch hour I often had a plain bun and a soft drink, like 7up. On one occasion during doctor’s rounds, an ICU consultant lectured me on the importance of looking after my health so that I could take care of Leah. A few days later when I was sitting  in the corridor outside ICU, this same consultant came along and noticed me eating a bun. He called over to me “Look at you eating junk food. That’s exactly what I was talking about.” I flinched with embarrassment and the indignity of it all, but I managed to hold back the tears until he was out of sight. I don’t honestly think that he meant to be cruel or unkind, I just don’t think that he had any idea of what it’s like to be the mother of a dying child and to feel as if all of your dignity and privacy has been stripped away, along with so much else.

Eventually, a few family members started to bring me in home cooked food some evenings, which I really appreciated. In order to get some measure of privacy,  I ate it while sitting on these softer seats in the Endoscopy Waiting Area, instead of in the corridor outside ICU. Any time that I needed a private space to talk to visitors or to my Support Worker from the NICFC  we also came and sat in this Endoscopy Waiting Area adjacent to the hospital foyer. This is where I sat on Monday 13th January 2014 as we discussed Leah’s end of life care and I shared my distress and frustration at having been told that we had ‘no options – I had been told that Leah was going to die in ICU there in Belfast City Hospital even though we had said that we wanted to take her home or to the Children’s Hospice.

Some weeks after Leah died I approached the management of Critical Care in the Belfast Trust  regarding various issues that I wanted addressed. I assured them that I had no issue whatsoever with the medical care that Leah had received as I knew that everything possible had been done to try and save her life. I referred to the kindness and compassion shown by so many of the staff who had cared for my daughter.  I deliberately did not address issues pertaining to the fabric of the building, lack of facilities etc. as I knew that their likely response would be ‘lack of funding‘. I assured them that most of the changes that I wished to discuss wouldn’t cost any money to implement. One of these changes was that I wanted for parents/carers of teenagers and young adults being cared for in Critical Care to be allowed to come and go freely. I said that it was an absolute disgrace that there had been some days when I felt that I had spent more time sitting in a hard plastic chair in a hospital corridor than at the bedside of my dying child.

In December 2015 I received an email from a senior member of staff that contained the following sentence: when we had a 16–year old in the (Intensive Care) unit a few weeks ago, her parents came and went freely without an eyebrow being raised – it was just accepted as the right thing to do.

I cried when I read this – tears of sadness for what we didn’t have when Leah was dying – but also tears of enormous joy and relief, knowing that no other families will endure the enforced separations that I experienced.

 

Colors of Goodbye ~ A Book Review

Colors of Goodbye ~ A Book Review

Despite my determination NOT to buy any more new books until I had made some inroads into the pile of unread titles weighing down my bookshelves, as soon as I read about the new book written by September Vaudrey and published last month, I was hooked. Within minutes my fingers had navigated the familiar keys of my keyboard, the book was ordered and it was on its’ way.

Colors of Goodbye

As soon as it arrived, Colors of Goodbye: A Memoir of Holding On, Letting Go, and Reclaiming Joy in the Wake of Loss captivated me with its tasteful cover and the delicate artwork that marks the beginning of each new chapter. I couldn’t wait to start reading it. I read the entire 292 pages in less than a week. There is much about September’s journey as a grieving mother that is different to mine, but there are also many similarities. September’s 19 year old daughter has a car accident and she is in a coma. They are told that she is ‘brain dead’.

September is a natural writer, she shares openly and authentically with her readers how she processes everything that happens:

Praying and hoping that God will perform a miracle and heal Katie.

Wondering if she should tell her adult children everything about Katie’s medical condition before they fly home or if she should wait and speak to them face to face, but thereby run the risk of them being informed via social media or text whilst en route?

September describes being alone with her daughter in ICU and noticing how quiet it is, save the beeping of the monitors and the rhythmic whoosh of the ventilator. She holds her daughter’s hand and asks herself “Is this real or is it a parent’s worst nightmare?” I too was that parent, alone in an ICU room with my unconscious daughter and the sounds of beeping and swooshing, knowing I would never again hear my daughter’s voice or feel her loving embrace.

Interspersed with these details are references to September’s unshakeable faith in a God who cares and her unfaltering sense of humour – I felt so at home in this book.

September writes through her pain and talks us through some of the challenges of being a grieving parent who is parenting grieving children. She speaks of her and her husband being together, yet alone – he doesn’t know what it feels like for a mother to lose a daughter and she doesn’t know what it’s like for a father to lose his little girl. Their four other children are teenagers and young adults and between the six of them they demonstrate a range of grieving styles. September describes the delicate process of learning to respect each other’s ways of coping. Her stoic husband Scott describes their grief and loss as being like an amputation – ‘the wound will eventually heal but we’ll still be missing an arm.

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September gives us insight into her thought processes as she endeavours to both hold on and let go. To find enduring ways to remember Katie and honour her place in their family, whilst at the same time not wishing to turn their home into a ‘Katie shrine’. September talks about the gaping wound in her soul that her daughter’s death has created and how easy it would be to fill this hole with bitterness, anger and self-pity. On the three year anniversary of her daughter’s death September discovers that the sorrow that has been her constant companion since Katie died was now mingled with ‘an inexplicable sense of peace and unapologetic sparks of joy’. September writes of this discovery:

God, always the gentleman, had not rushed me or demanded I accept this life whose story line still horrified me, and perhaps always would. He had simply continued to invite and to fan little embers of joy beneath the ashes as constant reminders of His love for me. He had not forgotten me or my family or our pain.

September’s authentic voice, as she writes movingly about the life and death of her beautiful daughter Katie and life after loss, has helped me to reflect on my own grief journey. Whilst travelling through the story of this grieving mama, I have revisited some of my own difficult places and found little pieces of healing. I highly recommend this book to anyone seeking to navigate the minefields of grief and loss while holding on to their faith in a loving God.

In this 6 minute video September and Scott talk about their loss. Scott says that he has good news and bad news: the good news is that you won’t always feel this way, that gradually the intolerable ache softens, the bad news is that you never get over this. He says that he’s learned to get on with life, but the loss of his daughter is always just below the surface. September says that in the almost eight years since Katie died, that God has continuously showed up in their story, usually in the thumbprints of other people – especially when people don’t forget your child and they don’t forget your sorrow – she describes ‘church’ as a community of people who do life together.

Forget Me Not 2016

Forget Me Not 2016

 

Yesterday, we attended the annual Forget Me Not Remembrance Service at the N.I. Children’s Hospice. As always, it was very moving and very beautiful.

My favourite part this year was the staff choir. There is something incredibly special about having the staff who cared for your child in their last days/hours ministering to you in song.

The staff take the entire service, which is also very special. Their loving support for the families of the children they have cared for, continues for as long as it is needed. This year the staff choir sang a song entitled This is the Sound of One Voice:

This is the sound of all of us
Singing with love and the will to trust
Hear your voice though your heart is crushed
This is the sound of all of us
This is the sound of all of us

One of the staff members who spoke told us that to care for someone is to learn the song that is in their heart and to sing it to them when they have forgotten it. How true this is; these people possess so much wisdom. Another one said that there will be days when there won’t be a song in your heart, but sing anyway. This resonated with me, as music has been so much a part of my journey with Leah and her illness.

To care for someone

During the refreshments afterwards the nurse who cared for Leah on the 16th January 2014 came to speak with us. We had never spoken to her since that day, she talked about the positive impact that Leah’s last moments had on her own life. Her words blessed me immeasurably.

She also told us about having made a poster for the door of Leah’s room that morning before we arrived, with One Direction on it. However, as family members started to arrive, she spoke to them to find out about Leah’s likes and dislikes. She soon discovered that Leah definitely wasn’t a One Direction fan, but that she did love music. She scrapped the original poster and made a new one.

Poster

 

I’m very glad that she did, because that poster meant so much to me. While Leah was in ICU, she had to wear a hospital gown because of all the tubes that were connected to her. On one occasion, I returned to Leah’s room to find that the nurses had dressed my unconscious daughter in a gown that was completely imprinted with the words hospital property. I was absolutely devastated. I stood there staring at it in horror, as I silently asked myself “Is this what my gorgeous daughter has become, a piece of hospital property?

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When we arrived that day at the Children’s Hospice for Leah’s end of life care  and I saw the poster on her bedroom door with her name on it, I knew that we were in the right place. Before we left, I went back down the corridor and photographed this poster, because it meant so much to me.

This nurse also told us about a little boy who hadn’t much time left and wanted to pet a giraffe before he died. He was much too ill to be taken to Belfast Zoo  so they contacted the Zoo and arranged for a real live young giraffe to be brought to visit this child in his room at the Children’s Hospice – isn’t that just so amazing??!!

After leaving the Hospice we called at Monkstown Woods  to visit the Butterfly Grove. Leah is remembered there because of the fundraising that so many of you have done in her name for the Children’s Hospice.

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Then it was time to for us to go to Leah’s Auntie Evelyn’s house for tea. Evelyn had invited some other family members to be there also, along with Leah’s ‘adopted’ Auntie Marion. A few years ago Leah asked Evelyn’s friend Marion if she could ‘adopt’ her as an auntie.

We had lovely food, sat in the warm sunshine – yes the sun does occasionally shine in Ireland – and we enjoyed each other’s company. When I thanked Evelyn for providing such a lovely tea for us, she reminded me that it was exactly what Leah would have wanted; Leah was always happiest when surrounded by family and friends and she loved good food.

I think that we honour our loved ones best when we take the time to be together and do those things that they enjoyed doing.

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The Bells of Christmas

The Bells of Christmas

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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!

 

Guest Blog – Forget Me Not

Guest Blog – Forget Me Not

Today was the annual “Forget Me Not Service” of Celebration and Remembrance organised by the N.I. Children’s Hospice.

Last year I wrote a blog post about this service, which you can read here

It’s my 3rd most popular blog post.

This year I will let Georgie’s Mum Oana give you her perspective on the event:

Mama's Haven

This afternoon, we attended the annual Forget Me Notservice organised by the Northern Ireland Children’s Hospice for the first time.

It was as emotional and raw and sweet and consoling as we had expected.

We cried and we remembered our precious children and we smiled at the memories we had made with them in the hospice.

Collective grief. Collective mourning. Collective beauty rising from the ashes of loss…

We heard about love that transcends death and time and makes a way for our emotions to find our lost beloved babes.

The pain of grief was compared to the thorn and the forget me not flower.

Grief is and forever will be for every parent and relative present there a painful reminder of what we have lost and also the ultimate indicator of how much we have loved.

Sorrow and sweetness, amalgamated in one.

Pain and endurance, blended together.

Coming…

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