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 last 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 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

The Land of the Living

The Land of the Living

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Friday 27th December 2013 started well. That night we were planning to go to a big surprise get together of family and friends for my niece’s 30th birthday. Leah was happiest when surrounded by family and friends and this was the first family get-together that she had been allowed to attend since her bone marrow transplant in Bristol on the 1st August earlier that year. Leah was very excited.

30th-birthday-invite

However, during that day Leah became seriously ill, with an initial diagnosis of pneumonia. She was admitted to the Cancer Centre  in Belfast and subsequently transferred to ICU at Belfast City Hospital. Two and a half weeks later we had a family get together of a different kind, when we all gathered together at the N.I. Children’s Hospice  to say our goodbyes – the ones that we didn’t want to have to say.

During Advent I have been reading the daily devotionals that were especially written for the charity Samaritan’s Purse UK by Malcolm Duncan. He is a Pastor at Gold Hill Baptist Church and a leader at Spring Harvest. Malcolm is sadly very familiar with grief and loss. I previously wrote here about his very helpful sermons on the topic of the theology of suffering. In his devotional for the 1st December what Malcolm wrote regarding the death of a friend of his, has really stuck with me and brought me great comfort:

When my friend died, she left the land of dying and entered the land of the living. Death did not win. Cancer did not win. Sin did not win. Her salvation is now complete. She is more fully alive than she has ever been. She is more fully herself than she ever was. She is complete, truly released and free. Nothing can change who she now is. This is the great hope of every Christian. God wins! God always wins in the lives of Christians because God always has the last word.

During those two and a half weeks when Leah was dying, she and I derived so much comfort from listening to her favourite songs, which she had previously saved into playlists. Their lyrics washed over our hearts and minds and pointed us to the only One who could give us the strength to face each day.

leahs-playlist

Since Leah’s death most of these songs have continued to bring me comfort, as I miss Leah and yearn for her presence in our lives. Today I have one of the songs from this list playing on repeat; ‘Bring the Rain‘ by MercyMe.

 Bring The Rain

I can count a million times
People asking me how I
Can praise You with all that I’ve gone through
The question just amazes me
Can circumstances possibly
Change who I forever am in You
Maybe since my life was changed
Long before these rainy days
It’s never really ever crossed my mind
To turn my back on you, oh Lord
My only shelter from the storm
But instead I draw closer through these times
So I pray

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there’ll be days
When this life brings me pain
But if that’s what it takes to praise You
Jesus, bring the rain

I am Yours regardless of
The dark clouds that may loom above
Because You are much greater than my pain
You who made a way for me
By suffering Your destiny
So tell me what’s a little rain
So I pray

Holy, holy, holy
Is the Lord God Almighty

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.

 

LHS COLOUR RUN 2016

LHS COLOUR RUN 2016

a single act of kindness

I went to get my hair done today and my hairdresser had a copy of the local newspaper ready to hand to me. It contained a full page spread of Years 13 and 14 pupils from Limavady High School participating in a Colour Run in Leah’s memory. I was aware that the Fun Run had taken place but I wasn’t aware that the photos were in the paper. The thoughtfulness of my hairdresser meant a lot – little things mean so much nowadays.

Colour Run

When Leah was alive, the children and I always went together to get our hair done, it wasn’t something I normally did alone. We used to go to a close relative in Donegal who has a salon in her house and we made it into a day out, stopping to shop (and get special treats) along the way. I ended up changing to a local hairdressers after Leah died, because I found it way too emotional to drive all the way to Donegal. However, the first time that I went to this hairdresser, who I had never met before, I dissolved into tears. She wasn’t fazed by my open display of emotion though and she supported me through it, in a kind and understanding way.

Four pupils organised the Colour Run and it took place at the start of their study leave. Leah would have been due to sit her A level exams and leave school this year, so this means that when her friends and classmates were taking part in activities to celebrate the end of their formal education, they found a way to include our daughter. This means so much to me, more than words can ever explain.

The pupils used the Colour Run as an opportunity to raise funds for the N.I. Children’s Hospice, the place where Leah died in peace and dignity, surrounded by love. They raised £1,000. This will bring the total donated in Leah’s memory to the N.I. Children’s Hospice to approximately £8,000. Other than the initial £2,000 donated ‘in lieu of flowers’, most of this money has been raised by staff and present/former pupils of Limavady High School  and Limavady Grammar School.

Northern Ireland Children’s Hospice is the only service of its type within Northern Ireland, caring for children and young people with very complex needs. There are over 1,300 life-limited children and young people and their families living in Northern Ireland, who need the specialist care that only the Children’s Hospice can provide. The Children’s Hospice aims to meet the emotional, social and spiritual needs as well as the physical ones, enabling children and young people to make the most of their lives within the limitations of their illness.

Children's Hospice

Leah would so approve of all of this fundraising for the Children’s Hospice. Leah absolutely loved children. When Leah was of Primary School age, I worked in a setting that provided respite day care for children with life limiting conditions, some of whom also received care from the Children’s Hospice. Leah used to ask me the first names of the little ones who were really unwell, so that she could pray for them. I remember Leah telling me that she prayed every night for Erin, Beth and Ella, amongst others.

Sometimes at work we had ‘family days’ and my children came to these too. I can picture Leah, aged around eight years old, sitting on the couch beside Erin and her mummy. Erin’s little fist was tightly clasped around Leah’s index finger. Leah sat there smiling, very content to at last have met one of these little ones for whom she prayed so faithfully.

Sadly, Erin died on the 16th April 2012, aged 7 years. In May 2014 when our family went to the Garden of Remembrance at the Children’s Hospice to place Leah’s memorial stone, we were accompanied by Erin’s parents. We placed Leah’s stone near Erin and her brother Martin’s memorial stones. I thought about them now in heaven, no longer bound by the confines of illness and disability.

Memory Run

Thank you to all of the staff and pupils of Limavady High School who worked together to make this Colour Run happen. Thank you for remembering our daughter in this way and for raising this money for the Children’s Hospice. Leah would be so proud of you all.

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?

hospital property print_13491

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.

Meme

The Listening Life

The Listening Life

Today when walking down the corridor at work, I bumped into the specialist in paediatric palliative care who was enormously helpful to us in organising Leah’s end of life care.

Straight away I felt the pangs of heartache, as my heart was transported back to the 14th January 2014 in Belfast City Hospital. I silently asked myself “Must it always be this way, will there always be pain triggers waiting round every corner?” Then I remembered hearing recently that every event is actually 20% fact and 80% perception, so I started talking to myself in my head about how blessed we were to have had the support and expertise of this amazing woman and how much her input meant to us at the time. Within minutes I was feeling more positive.

A couple of hours later I was going down the corridor and I met her again. She stopped and asked me how I was. I looked in her eyes to see if she was just being polite or if she really wanted to know. Her facial expression told me that she really cared, so I told her the truth. She also enquired about each family member. I briefly told her about some of the ways in which we are struggling to rebuild our lives while battling the pain of grief and loss.

Then, just like she did in the corridor of the City Hospital 26 months ago, she hugged me and said “Let’s say a wee prayer.” For a few hallowed moments she quietly lifted up each member of my family to God in prayer. I felt God’s peace touch my heart.

She’s a very busy doctor, with a very busy agenda, but somehow in the middle of her very busy day she took the time to minister to my heart. How long did it take? Ten minutes perhaps? Yet it meant so much to me.

I felt blessed and encouraged by her actions, but I also felt challenged. How often am I so caught up with my own agenda – however good and noble that may be – that I allow no time for the unexpected, no time for ‘God’s agenda’?

A few weeks ago I was scrolling through the Facebook page of author Cheri Gregory  when my attention was caught by a quote from a book called The Listening Life: Embracing Attentiveness in a World of Distraction by Adam S. Mc Hugh.

The Listening Life 2

I immediately headed over to Amazon, where I read this about The Listening Life:

“Be quick to listen, slow to speak.” James 1:19 How would our lives change if we approached every experience with the intention of listening first? In this noisy, distracting world, it is difficult to truly hear. People talk past each other, eager to be heard but somehow deaf to what is being said. Listening is an essential skill for healthy relationships, both with God and with other people. But it is more than that: listening is a way of life. Adam McHugh places listening at the heart of our spirituality, our relationships and our mission in the world. God himself is the God who hears, and we too can learn to hear what God may be saying through creation, through Scripture, through people. By cultivating a posture of listening, we become more attentive and engaged with those around us. Listening shapes us and equips us to be more attuned to people in pain and more able to minister to those in distress. Our lives are qualitatively different indeed, better when we become listeners. Heed the call to the listening life, and hear what God is doing in you and the world.”

I was ‘hooked’ and ordered it immediately. When the book arrived I started reading with great enthusiasm and got as far as page 50, then unfortunately I got totally distracted by other books that I was reading simultaneously and forgot about The Listening Life. This is by no means a negative reflection on The Listening Life; I regularly have three or four books on the go at any one time and I dip in and out of each of them depending on my mood!

I absolutely love books, I only wish that reading them were as easy as buying them! However, today’s encounter reminded me of why I bought The Listening Life and how important it is to listen – really listen – to God and to each other.

P.S. Click here to read an excerpt from The Listening Life on Emily P. Freeman’s blog.

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!