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

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!

 

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…

View original post 217 more words

Grieving For A Sister

Grieving For A Sister

CHRISTMAS 2012 Leah and Miriam in their new onesies.
December 2012 Leah and Miriam in their new onesies.

Last night Miriam was upset about a school playground incident. I listened to her and hugged her as she cried.

Then I went to my room and I cried too – upset that my little girl has been left like an only child, with only her mum and dad to turn to much of the time.

From Leah's Facebook page
From Leah’s Facebook page. The caption underneath reads “I do love my little sister.”

Up until September 2012 Miriam had two older sisters living at home. The three girls had each other to discuss their woes with. Oftentimes I heard things second hand rather than first hand.

Leah was the primary dispenser of hugs. From a young age, Leah’s emotional barometer was very sensitive, she usually knew if anyone was upset and she offered them comfort. Even while still of Primary School age, Leah could sense if I had a difficult day at work and she would offer me a hug.

I remember one day when Leah was very young, maybe 6 or 7 years old, I was very grumpy and got very annoyed with her regarding some childhood misdemeanour. She fled to her room in tears. When I had calmed down, I went to her room to speak to her and she looked at me with her big brown eyes, like a wounded puppy, and exclaimed “Mummy, you’ve hurt my feelings.” I didn’t know what to say.

I remember another time when Leah was 5 years old and I was very worried about a family situation, but trying not to show it. I remained calm on the outside (or so I thought) and I was very careful about what I said in front of the children. Leah’s big brown eyes looked up at me as she asked “Mummy, is this the worst day of your life?” I was speechless.

I know what it feels like not to have sisters living at home to share secrets with. By the time I was Miriam’s age, all four of my siblings had left home. I hated feeling like an only child, with only my parents for company, kind and caring though they were.

Similar to Miriam, I was a ‘wee late one‘, except that it was Cork City not Northern Ireland, so Mum used to tell people that I was “an afterthought – her baby“.

At home she called me “a chuisle, mo chroí” which is Gaelic for “the pulse of my heart“, or else she called me “Vicky, a leanbh” which is pronounced “Vicky Alanna” and means “Vicky, my child” – a term of endearment.

This is how Leah came to be named Leah Alanna.

As Miriam sobbed her heart out last night, it occurred to me that her tears were probably not only regarding the incident in question – the usual stuff of pre-teen girls – but her tears were also expressing the loss of a sister who had always been a source of comfort.

Miriam and Leah were very close. Miriam accompanied us to Bristol for Leah’s first Outpatient’s Appointment.

Miriam accompanied Leah and I again when we flew over for Leah to be admitted for her Bone Marrow Transplant.

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Aldergrove Airport 21st July 2013

Miriam came right to the door of the Transplant Unit, beyond which no children are allowed, unless they are patients. The Transplant Unit swallowed Leah and I up, whilst Hospital staff cared for Miriam until our childcare arrangements kicked into place.

Once Leah was back out of the Transplant Unit, five weeks later, Miriam was over twice to visit us with her Daddy. Leah loved when family came to visit.

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Bristol 28th AUGUST 2013

During the 6.5 weeks that Leah had at home before her final hospital admission, if Miriam wasn’t at school, she barely let Leah out of her sight. She used to get off the school bus, get changed and go straight down to Leah’s bedroom. There she stayed until bedtime.

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Leah ready to attend Nic’s formal on the 21st November ’13

On one occasion, for a very special treat, she was allowed to sleepover in Leah’s bedroom with her.

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This was the last ever photo taken of Leah and Miriam together – 20th December 2013

When Leah was critically ill in ICU, she was desperate for Miriam to be allowed in to visit her, but the rules of ICU were “No Children Allowed“.

I tried to explain this to Leah, who was on a ventilator and communicated by typing on her iPad, but she insisted that I could just bring Miriam on in without permission, because she didn’t look like a young child. This was Leah’s reply to me on the matter:

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I asked the staff about bringing Miriam in to visit Leah, but they were concerned that it would be distressing for Miriam to see her sister so ill and said that she needed to be helped to prepare for this. A Family Worker from the local Hospice was sent out to our house to start this work.

Of course, while all of this was happening, Leah’s condition was gradually deteriorating and both time and opportunity were lost.

Eventually, at 1am on Thursday morning the 16th January 2014, Horace drove to Belfast City Hospital with Miriam and Simon. I sat in the car and explained things to them. Then the two of them accompanied me into the ICU to say their goodbyes to their much loved sister, who was now deeply unconscious and hooked up to countless machines.

It was one of the saddest moments of my life.

One of the many challenges for a bereaved parent, is trying to support our grieving children, when oftentimes we feel barely able to support ourselves.

Walking Taylor Home

Walking Taylor Home

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I’ve just finished reading the book Walking Taylor Home. It’s the type of book that I would have devoured in a few days, before Leah’s illness and death took it’s toll on me.

Now it’s taken me a few weeks to read, due to a combination of poor concentration and me needing to stop regularly to cry and give myself an emotional break.

It is however a very heartwarming true story and I feel the richer for having read it.

There are some parallels to our own journey and many differences.

Bone Marrow Transplant Unit, Bristol, July 2013
Leah in the Bone Marrow Transplant Unit, Bristol, July 2013

Brian, the author, is the dad of a pre-teen son Taylor who was diagnosed with cancer. Brian chronicles their journey via detailed, heart wrenching but also witty, email updates that he sends out to praying friends. These later become the basis for this book.

Initially Taylor has chemotherapy and surgery and everything is looking good. However his cancer soon returns with a vengeance. Difficult conversations have to be had and tough decisions have to be made.

Eventually Brian has to have the conversation that no parent ever wants to have with their child – the one where you prepare them for the possibility of their own death.

Last week I had coffee with the doctor who, on the 28th December ’13 admitted Leah to ICU in Belfast City Hospital and then took me into a room to tell me that my daughter was possibly going to die.

Less than 36 hours previous to this I had a daughter who was very excited about going to her first big family party since her bone marrow transplant. Suddenly she and I were faced with discussing the possibility of her death.

At home on the 20th December 2013
At home on the 20th December 2013

I had never rehearsed this moment, I had no preplanned script. I had always thought that there would be more time.

If living with cancer feels like being on a roller coaster, Leah’s bone marrow transplant felt, at times, like one very nasty game of snakes and ladders.

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The transplant process itself was like climbing a very steep ladder. Then, at the end of August ’13 Leah progressed to being transferred out of the transplant unit in Bristol Children’s Hospital to their beautiful state of the art, purpose built Adolescent Unit. All of Leah’s blood results were going in the right direction. We were ecstatic. We thought we only had to roll a six and we would be home.

However the next roll of the dice landed us on the nasty snake of graft vs host disease.

Steroids along with some other meds (MMF & methotrexate) brought her GVHD under control, so we climbed another ladder – eager to roll the numbers that would take us home. Instead we rolled again and landed on another snake – Leah developed haemorrhagic cystitis caused by BK polyoma virus and was back in the transplant unit.

This snake was particularly venomous, but eventually we got out of hospital and were told that we could book our flights back home to Ireland. Within days, the next roll of the dice caused us to once again step on a snake, resulting in yet another readmission to the transplant unit.

Oh how I hated this cosmic game of snakes and ladders. Thankfully soon after that we did make it back to Ireland. We got approximately six weeks at home before the final roll of the dice landed us on the biggest and most venomous snake to date – pneumonitis or idiopathic pneumonia syndrome.

I wanted to be emotionally available to my daughter in ICU and I needed to stay strong at all times, so I couldn’t allow myself to process the emotions produced by any of this while it was all still happening.

I was really looking forward to meeting up with this doctor last week, as he showed us so much kindness and compassion during our two and a half week stay in ICU. I enjoyed my rendezvous with him and we had a good chat.

However, meeting up with this lovely doctor also reconnected me with the shock that I had experienced, but suppressed, when the 36 hours between Friday morning and Saturday evening, brought about the dramatic transition from happily discussing the impending family party with Leah, to sadly discussing the possibility of her impending death.

This triggered a huge wave of grief last weekend.

I don’t however have any regrets about meeting up with this doctor. I’m very grateful to the members of staff who cared for Leah and who have since made time to meet me for coffee. This helps me to process my thoughts and contributes towards my healing.

In the book “Walking Taylor Home” Brian does not shy away from the difficult spiritual questions such as the issue of “healing”.

At all times he allows that God can and does heal, but asserts that God is not like the genie in the lamp, dishing out healing based on enough people rubbing the lamp in the right way.

Brian is very honest about his spiritual struggles as the parent of a dying child. There was so much that I could relate to, even though I had to take regular emotional breaks.

For me it wasn’t a depressing book. It was dreadfully sad yes, but Taylor’s beautiful personality and the incredible bond between father and child was so touching.

I suppose that what I liked and what comforted me – through my tears – was that Brian, like me, recognised that part of being a parent was to lovingly prepare his child for death and then let him go, into the waiting arms of a loving Heavenly Father.

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Belfast City Hospital to the Children’s Hospice

Belfast City Hospital to the Children’s Hospice

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I love this photo of Leah.

Sometimes when I look back over everything that I’ve written in this blog about the care that Leah and I received during her illness, I worry that I haven’t said enough about all of the good care that we experienced.

I worry especially that I haven’t said enough regarding the many excellent staff that looked after us in Belfast City Hospital.

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There are a few possible reasons for this:

Our first impressions of the City Hospital were very negative and I think that this in some ways coloured my subsequent perceptions.

Secondly, I always struggled with what I considered to be the lack of age appropriate care in an age appropriate environment in Belfast, for our fifteen year old daughter.

Thirdly, my emotions were in tatters during the two and a half weeks that Leah was dying in ICU in the City Hospital and that obviously coloured the lens through which I interpreted everything.

When Leah was in Bristol Children’s Hospital and developed complications post transplant, she was prescribed pain relief in the form of  tramadol and oramorph – a derivative of morphine. I was slightly alarmed at this and had visions of my daughter becoming a junkie!

The doctor reassured me however and explained that a bone marrow transplant had very severe effects on the body and initially all of her pain receptors would be in a state of heightened awareness, so that any pain that she experienced would feel quite severe and needed to be treated as such.

This actually made sense to me. I noticed that Leah had also become quite “sound sensitive” and couldn’t cope with any noise – even a dripping tap drove her crazy.

Well, whenever Leah was dying in ICU, I reflected back on this and compared it to how I was now feeling emotionally.

I felt as if all of my emotional pain receptors were in a state of heightened awareness.

During Leah’s final weeks, there were three things that I desperately wanted from the hospital staff:

1) To be allowed to remain at my ill daughter’s bedside continuously.
2) To be kept fully informed of her medical condition and their treatment decisions.
3) For any staff that came in contact with me to show kindness and an awareness of my needs as Leah’s Mummy.

When what was happening to me did not meet the above criteria, my emotional pain transmitters started firing and at times this felt unbearably painful.

However, when all of the above criteria were being met, I felt calmer and I found it much easier to cope.

I have to say, that most of the staff were very kind.

Those that got it right for us got it very right.

We had got off to a shaky start (at the time of diagnosis) with our haematology consultant, but Leah & I quickly put that behind us when we discovered how kind and caring he really was and is.

Our TYA (Teenage and Young Adult ) Cancer Nurse Specialist and our Clic Sargent Social Worker were there for us every step of the way and they were an enormous source of support to both of us. I don’t know how we would ever have managed without the two of them.

Most of the nurses were incredibly kind and caring, I wish that I could name them all and thank them individually.

There was two women who regularly cleaned the hospital during the night. They always had a smile and a kind word for me – they will never know how much this helped.

Sometimes, when a doctor wanted to talk to me, I was taken into the ICU office and two or three other members of staff piled in and watched while the doctor was talking to me. I detested this audience.

I was never told good news, so here I was, being told things about my daughter’s medical condition and life expectancy, that no parent ever wants to hear, struggling to maintain my dignity, while all of these pairs of eyes were fixed on me.

I would like to have been asked who I wanted to accompany me to meet with the doctor. I would most likely have chosen my TYA cancer nurse specialist, if she was available.

On another occasion, one of our favourite consultants was on duty, a young man who never failed to treat Leah and I with respect and compassion. When he wanted to speak to me, he “smuggled” me out of ICU and down a corridor and through another unit and into what looked like a store cupboard, far away from inquisitive eyes.

There, he gently, falteringly, explained to me that he really didn’t think that Leah was going to survive. Oh how I appreciated the respect that this doctor showed to me and his compassion. No, I didn’t want to hear what he was telling me, but it was so much easier to hear, when the information was delivered in a context that showed an understanding of my needs.

The day that Leah was being admitted to ICU it was the lovely consultant from Cork who assessed her, admitted her to ICU, then broke the news to me that my daughter was possibly going to die.

On Wednesday morning 15th January ’14 when we were in an end of life situation and Leah’s medical condition was rapidly deteriorating, the consultant from Cork, who always treated Leah and I with such dignity and respect, was mercifully once again on duty.

This incredibly compassionate man uttered the words that I will never forget “I’m off tomorrow morning – I will use this time to transfer your daughter to the N.I. Children’s Hospice.”

48hrs prior to this I had been told that under no circumstances could our daughter be transferred to the Children’s Hospice for her end of life care, as she was on a ventilator and too ill to be moved. I had found this very distressing as, if our daughter was going to die, we did not want her to die in critical care or even in an acute hospital setting.

When I was pregnant I was encouraged to write a “birth plan“. www.nhs.co.uk states “Use your birth plan as an opportunity to explain the things that really matter to you. However, remember to be flexible and recognise that things don’t always go to plan.”

Well, when Leah was dying I wanted a “death plan” – it was going to be my last act of love for my dying child. Of course, the “politically correct” term for this is an “end of life care plan”.

We have a large extended family who all needed the opportunity to say goodbye to Leah and she herself just loved big family get-togethers. No ICU anywhere could possibly have accommodated all of us. Least of all the ICU in Belfast City Hospital which does not even have a ‘relatives room‘ on site.

The Children’s Hospice was the only place that could accommodate our family’s needs and provide the type of end of life care that I wanted for Leah.

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No, I didn’t want our daughter to die, of course I didn’t, but I thank God for all of the kindnesses that we experienced through it all, for the many people who touched our hearts along the way.

Leah was looked after by eight different consultants during her time in ICU, they all provided excellent medical care. They all cared about my daughter and they did everything humanly possible to save her life.

However, for me it was very special that the same kind, caring consultant from Cork (my hometown) who took Leah into ICU on the 27th December 2013, was the very same consultant who took her out of it and brought her to the N.I. Children’s Hospice on the 16th January 2014.

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