Guest Post: The Art of Presence

Guest Post: The Art of Presence

I read lots of articles about grief but I repost very few of them. Generally, as I read through these articles, I agree with most of what I read, but there is almost always at least one sentence that I read and think “No, that’s not me.”

However, this morning I read a New York Times piece on trauma, entitled The Art Of Presence and immediately I could identify with all of the points that I was reading. I will reprint it in full at the end of this blog piece, but first I would like to comment on some of the parts that I identified with.

Yes, suffering is a teacher, I feel like I’m on a very steep learning curve. I wish that there could have been some other way, to learn the many lessons that I feel I have learned over this past two years, but perhaps there is no other way.

Pain

The art of presence” – oh how very much I have appreciated the many people who have been there for me and my family during the past two years. As the article says, some are “firefighters” and some are “builders”. There is a place for both. The article correctly says that there is no way of predicting which friends, or even acquaintances, will step up to the plate and provide that loving support.

Nowadays, I especially appreciate those who show that they still remember. I appreciate those friends, relatives, neighbours and work colleagues, who unobtrusively minister to my heart with a squeeze of the hand, a timely hug, a ‘like’ on a Facebook post, or a quiet “how are you doing”, accompanied by a facial expression that shows they really care.

To be honest, there are some days when I am driving to work, a church service or a social event, with tears streaming down my face and I have to wrestle with the urge to turn my car and head for the cemetery instead.

Do bring soup”. Oh wow, so many of you have done this for us in so many different ways.

You fundraised for us in countless ways, so that all of our financial needs were catered for. While Leah and I spent approximately twenty weeks in hospital, you came and helped Horace to build a beautiful house, that I thank God for every day.

All proceeds

You baked us buns, yummy, delicious buns.

You filled our freezer with delicious dinners, for months after Leah died. So much so, that not only was I able to feed my family, I was even able to invite close friends to eat with us too. This was very important to us, at a time when our house felt much too quiet and the ’empty chair’ was so conspicuous.

Some gifts were a “one off” and came at just the right moment. Like the generous gift of money pushed through our door the day before five of us flew to Bristol for our first Outpatients Appointment. As I stared at the bundle of Bank of England notes, I thought it very strange that they were all fresh, crisp, BANK OF ENGLAND notes – our cash dispensers here normally dish out Northern Irish sterling. Then I realised, that this friend had remembered, what we had completely forgotten – we needed Bank of England sterling for our two day trip to England the next day. I immediately thanked God for providing for our needs through the thoughtfulness and generosity of a friend.

Philippians 4 19

Don’t try to make sense of what has happened” – that is my prerogative, not yours. Some good things have come out of Leah’s illness and death, but that doesn’t make her illness and death “good”, or make it feel in any way justifiable.

As the Rev Craig said at Leah’s funeral, some things in life will always remain a mystery.

The Art of Presence

JAN. 20, 2014
David Brooks
Tragedy has twice visited the Woodiwiss family. In 2008, Anna Woodiwiss, then 27, was working for a service organization in Afghanistan. On April 1, she went horseback riding and was thrown, dying from her injuries. In 2013, her younger sister Catherine, then 26, was biking to work from her home in Washington. She was hit by a car and her face was severely smashed up. She has endured and will continue to endure a series of operations. For a time, she breathed and ate through a tube, unable to speak. The recovery is slow.
The victims of trauma, she writes in a remarkable blog post for Sojourners, experience days “when you feel like a quivering, cowardly shell of yourself, when despair yawns as a terrible chasm, when fear paralyzes any chance for pleasure. This is just a fight that has to be won, over and over and over again.”
Her mother, Mary, talks about the deep organic grief that a parent feels when they have lost one child and seen another badly injured, a pain felt in bones and fiber.
But suffering is a teacher. And, among other things, the Woodiwisses drew a few lessons, which at least apply to their own experience, about how those of us outside the zone of trauma might better communicate with those inside the zone. There are no uniformly right responses, but their collective wisdom, some of it contained in Catherine’s Sojourners piece, is quite useful:
Do be there. Some people think that those who experience trauma need space to sort things through. Assume the opposite. Most people need presence. The Woodiwisses say they were awed after each tragedy by the number of people, many of whom had been mere acquaintances, who showed up and offered love, from across the nation and the continents. They were also disoriented by a number of close friends who simply weren’t there, who were afraid or too busy.
Anna and Catherine’s father, Ashley, says he could detect no pattern to help predict who would step up and provide the ministry of presence and who would fumble. Neither age, experience nor personal belief correlated with sensitivity and love.
Don’t compare, ever. Don’t say, “I understand what it’s like to lose a child. My dog died, and that was hard, too.” Even if the comparison seems more germane, don’t make it. Each trauma should be respected in its uniqueness. Each story should be heard attentively as its own thing. “From the inside,” Catherine writes, comparisons “sting as clueless, careless, or just plain false.”
Do bring soup. The non-verbal expressions of love are as healing as eloquence. When Mary was living with Catherine during her recovery, some young friend noticed she didn’t have a bathmat. He went to Target and got a bathmat. Mary says she will never forget that.
Do not say “you’ll get over it.” “There is no such thing as ‘getting over it,’ ” Catherine writes, “A major disruption leaves a new normal in its wake. There is no ‘back to the old me.’ ”
Do be a builder. The Woodiwisses distinguish between firefighters and builders. Firefighters drop everything and arrive at the moment of crisis. Builders are there for years and years, walking alongside as the victims live out in the world. Very few people are capable of performing both roles.
Don’t say it’s all for the best or try to make sense out of what has happened. Catherine and her parents speak with astonishing gentleness and quiet thoughtfulness, but it’s pretty obvious that these tragedies have stripped away their tolerance for pretense and unrooted optimism.
Ashley also warned against those who would overinterpret, and try to make sense of the inexplicable. Even devout Christians, as the Woodiwisses are, should worry about taking theology beyond its limits. Theology is a grounding in ultimate hope, not a formula book to explain away each individual event.
I’d say that what these experiences call for is a sort of passive activism. We have a tendency, especially in an achievement-oriented culture, to want to solve problems and repair brokenness — to propose, plan, fix, interpret, explain and solve. But what seems to be needed here is the art of presence — to perform tasks without trying to control or alter the elemental situation. Allow nature to take its course. Grant the sufferers the dignity of their own process. Let them define meaning. Sit simply through moments of pain and uncomfortable darkness. Be practical, mundane, simple and direct.
Ashley and Mary went to Afghanistan a few months after Anna’s death. They remember that as a time out of time. They wept together with Afghan villagers and felt touched by grace. “That period changed me and opened my imagination,” Ashley recalls. “This thing called presence and love is more available than I had thought. It is more ready to be let loose than I ever imagined.”

 

Father’s Day

Father’s Day

This morning I read a beautiful blog post about buying Father’s Day Cards called Fathers Are Not Idiots.

When Leah and I used to attend Oncology Day Beds in Bristol Children’s Hospital, we were normally in a single room, as Leah’s immunity was so low.

However, one day, I happened to glance in one of the three bedded rooms and what I saw there just melted my heart.

I saw a pale child, with chemotherapy hair loss, sound asleep on top of his bed. Also asleep on top of the bed, was the child’s daddy, with his large frame curled protectively around his little son.

I quietly called one of the nurses over and the two of us just stood there, drinking in this picture of parental tenderness and nurturing. I felt like I was standing on holy ground.

How I wished that I could photograph the scene, but this family were outpatients and I didn’t know them, so there would be no way to obtain their consent.

I had so many emotions in my heart as I stood there gazing at this sleeping daddy protecting his sick little boy. I wondered did that daddy ever have the urge to scoop up his beautiful little boy in his arms and run away, far away, from all the needles and the poison (chemotherapy) that promised to make his child better?

As parents, our desire to protect our children from harm is so strong, but as adults we understand that sometimes the cure hurts and that they may even feel worse before they feel better. We hope and pray that it will be a cure and that they will feel better, because for some children, like Leah, the cure kills.

Nevertheless, I thought it was so beautiful that here in this busy Oncology Outpatients Department, this Daddy did the one thing that he could do for his child; provide comfort by getting on the bed beside him and enveloping him in his arms as he slept.

Sadly, not everybody has such a positive experience of their earthly father.

We live in a broken world.

However, the Bible describes God as our Heavenly Father. The most famous prayer in the Bible begins with the words  “Our Father, which art in Heaven, hallowed be Thy nameMatthew 6:9 or, as I learned growing up “Ár nAthair atá ar neamh, go naofar d’ainm,”

This weekend Father’s Day is celebrated, but for those of us who don’t have an earthly father to celebrate, we have a loving Heavenly Father. One of the most beautiful descriptions of His love for us is in Zephaniah 3:17 (NKJV)

The Lord your God in your midst,
The Mighty One, will save;
He will rejoice over you with gladness,
He will quiet you with His love,
He will rejoice over you with singing.”

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My Sock Story

My Sock Story

I recently discovered this very interesting site called What’s Your Grief?

When I read this post called Sometimes Socks Are Sad I thought about my own ‘sock story’.

Shortly after Leah was diagnosed we received a very generous financial gift from a very dear family friend called Shirley.

Shirley also had blood cancer and had been through a stem cell transplant. She wasn’t financially well off, but she had a very loving heart. She outlived Leah by approximately six months. She is very much missed by all who knew and loved her, but like Leah, she looked forward to the day when she would meet her Lord and Saviour face to face, the one who loved her most of all.

I suggested to Leah that this money be used to purchase items that she would need during her hospital stay in Bristol. Anyone who knows Leah knows that she just loved shopping in Primark.

On one of our trips to Belfast for one of Leah’s many hospital appointments, she and I headed into the centre of Belfast to their massive Primark store. Leah filled our shopping basket with pyjamas, underwear and soft comfy socks.

Bristol has an amazing flagship Primark Store in the former House of Fraser building.

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Early on in our time there I was dispatched to this store to buy Leah more of her favourite socks. She called them “popcorn” socks because their texture felt bubbly like popcorn.

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During Leah’s time in the Bone Marrow Transplant Unit in Bristol, she went to theatre three times to have her Hickman Central Line removed and replaced. Leah was very ill and I always found these times very difficult emotionally.

On each of these occasions Leah had to remove all of her jewelry and wear a hospital gown and cap. The only personal item that she was allowed to wear was her socks. She always wore her ‘popcorn’ socks. The lovely paediatric anaesthetists always commented on her socks and told her how pretty they were.

Even though my heart was breaking, I really appreciated the effort they made to notice the ONE thing about my daughter that represented her individuality. It also represented their efforts to engage with us as fellow human beings.

It was a similar story with Leah’s earrings in the weeks that followed. Chemotherapy hair loss, facial hair growth caused by cyclosporine and hamster cheeks from her steroid therapy, had all changed Leah’s appearance. Yet the hospital staff were always careful to notice and comment positively on her earrings.

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Leah had a variety of cute earrings from Claire’s Accessories. I so appreciated the efforts made by the staff to notice that one small way in which Leah could still express her personality – so important, especially for a young person.

Then recently I was in Primark here in town. Without thinking, I wandered down the sock aisle. There I saw them, Leah’s favourite “popcorn” socks, in so many pretty colours.

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I held my breath, I fought back the tears. I remembered when Leah was so ill in Bristol, that she couldn’t even swallow her own saliva and I had to assist her with all of her personal care. Every day I put clean socks on her feet. Soft, comfy, colourful socks.

What a privilege it was to be able to care for my daughter and show her my love. I thank God for the health and strength that I experienced throughout Leah’s illness, that I was able to care for her 24/7. Even the chronic migraine that has dogged my existence since childhood, took a backseat during those months.

Someone told me today about a mother who could not cope emotionally when her adult daughter was dying of cancer. Throughout her daughter’s three month hospitalisation that preceeded her death, her mother never once visited her, because she couldn’t deal with the situation emotionally. This person said to me “Vicky, you are blessed, because you are so tuned in to your own emotions, that you were always available to Leah, emotionally and in every other way.”

I agreed with her, I am blessed in that way.

I’m not blessed that my daughter took ill and died.

I’m not blessed that my heart is broken.

I am blessed though, that God created within me, the resources that I needed to care for Leah and show her my love, while she was living.

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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Thank You

Thank You

I absolutely love the beautiful, grace filled, writings of Kara Tippetts, who recently died from cancer.

In this, one of her older blog posts, she writes –

As I reached the parking lot, the dear woman and her husband, who asked me my hard times of day, jumped out of their car. Her husband wrapped me in a big hug and said, I’m 6:30 every day, and she called to me, I’m 10 every night. I was undone. I cry now thinking of this couple doing battle with me in my weakest moments. I would like to say those times of day are getting easier. They are not, but I know I’m not alone in them.”

As I read this, I think of the many who prayed for us (and continue to pray for us), when we were barely able to pray for ourselves.

So many days and nights spent in hospital with Leah, being told things no parent ever wants to hear, feeling so alone, yet always knowing I wasn’t alone.

In the quietness of our hospital room, a text or a Facebook message would come in, with a word of encouragement, or an assurance that somebody, somewhere, was praying for us.

How could we ever have got this far, without the many who have supported us emotionally, spiritually and practically?

One of my many favourite Bible verses has long been

1 Samuel 23:16 (NIV)

And Saul’s son Jonathan went to David at Horesh and helped him find strength in God.

It’s not always about preaching and teaching, sometimes it’s about a hug, a squeeze of the hand, a thoughtful but inexpensive gift, or just being there for somebody, letting them know that someone really does care.

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Dear Dalriada Doctor

Dear Dalriada Doctor

This blog post was written by a friend of mine called Oana. Her beautiful baby boy Georgie, died of leukaemia in the N.I. Children’s Hospice in July 2014.

I love to read Oana’s blog posts, but this one in particular touched my heart.

I work in the NHS and occasionally clients appear to “demand” more than I feel that I have to give – there is NEVER enough time, there is NEVER enough staff.

It’s good to be reminded that EVERYTHING we do, should be done with COMPASSION and RESPECT – because very often we don’t know the other person’s story and the burdens that they are carrying.

Mama's Haven

Dear Dalriada Doctor,

I am sorry I inconvenienced you today by phoning twice for a prescription I should have had the consideration to organise before the Easter holidays began.

Mea culpa.

But still, a bit of compassion and respect would have worked wonders, you know?

I get it.

You sounded bored and ready to go home.

Maybe the extra money you are getting for working on a public holiday does not make you happy.

I understand.

Maybe you had been working from 9 in the morning and had had enough of snotty toddlers and drunk youths. Or maybe you were on call last night and you went to see a dying child in the hospice close by your practice. Possible.

But you don’t know my story.

You didn’t scroll long enough through my medical file to see that in July last year, my life changed into a nightmare forever.

I…

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Guest Blog – Who She Was To Me

Guest Blog – Who She Was To Me

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Jenny and Leah

One of Leah’s close friends has written this beautiful tribute to her, called Who She Was To Me.

The Bristol visit she refers to was in October ’13, but to me it feels like it was only yesterday.

It was Leah’s 14th week away from home and in another country. Much of that time had been spent in isolation. She had been horribly ill, enduring countless side effects from her treatment. She had become very lonely and longed to see her immediate family and close friends.

Children/young people with serious or life threatening illnesses sometimes get visited by well known singers or actors to cheer them up.

Leah wasn’t interested in seeing anybody famous, but she was really cheered up (and so was I) by the two separate visits that we had that week from young people from back home. They were in England for other reasons, but they both took the time and trouble to get to Bristol Children’s Hospital, to enter our world and brighten our day:

Who She Was To Me

She smiled a lot. Like most people, she was most beautiful when she smiled. I remember once describing her as a diamond; the pure white light of Christ shone in and what came out was the refraction of a thousand shades of colour, flowing bold and bright onto everyone around her. And, like a diamond, she shone brightest against the blackness of this world.

I met her when I was sixteen. She was wearing a “To Write Love On Her Arms” band around her wrist and instantly we clicked. Several weeks on it was like an ancient bond, something God himself put into motion.

One time in particular, I remember, after Youth Fellowship at her church her mother came to pick her up but my dad was typically running late. As any fifteen year old girl is aware, mummy wouldn’t be too pleased waiting in the car-park for longer than a few minutes. But she waited. She waited with me until my father pulled up in the red Passat. She hugged me tight and skipped off down the steps. That was the kind of person she was though. She would put others before herself; if you were happy she would rejoice. If you were worried or unhappy or lost she would empathise and intercede in prayer. She was a selfless being.

I didn’t realise is at this point, that one day this young girl would change my life.

“I haven’t been feeling too well for quite a while now. So mummy made an appointment and I have to go for bloods on Tuesday. There was almost worry in her eyes, but not quite- she wasn’t a worrier.

“The bloods were clear but ‘cause I’m still not better I have to go to Belfast for more tests. And one of those scans.”

“They didn’t find anything again. They want me back for an MRI next.” Before I left her this time, I made her a little card. A pathetic folded piece of pink paper with a flower on the front and a little word of encouragement on the inside. Petty as it was, she looked at it as though it was made of gold because she knew it was made of love.

It’s vivid, this part. When I dwell on it, it plays like a GIF on my mind. My phone rings as I exit Ebrington Square with my mum.

“It’s Leah,” he almost hesitates, “She has cancer. Her sister just told me, bone marrow cancer.”

I climbed into the backseat of the Passat with confusion stinging my eyes and explained to my parents what the subject of the call had been.

Facebook and texts kept us in contact. She and her mother created a Facebook page on which we were regularly updated. She told me she had to go to Bristol for treatment. I vowed I would visit her there. My cousin lives 20 minutes from where she’d be and I’d go to see her when I was over next. I promised. I kept that promise, even if it took a while.

I saw her once before this in Altnagelvin. She fell significantly ill right as her GCSE modules were approaching. Something called febrile neutropenia. She could have died if she hadn’t been treated right away. Rather than accept defeat and miss her GCSE modules, she sat in isolation and took her exams. That’s the kind of person she was; she battled when it seemed the fight was against her. She gained As and A*s in every one of them. I went to her on the evening of the Maths exams to give her mother a short rest. I gave her the small shell decorated bracelet I bought on holidays, and tying it around her wrist she gave me that same look she gave me when I gave her the petty card, as though I had given her gold. I remember the apple juice cartons on the bedside table; the way the old leather visitors chair creaked and my yelp as the scalding tap water touched my fingers and her voice filtered through the bathroom warning me a little too late that the water was boiling hot. I remember how we talked about the difficult things in our past that were so similar, and the way she couldn’t remember the name of that song and I began to tear up as something in me knew exactly which song it was and as I started to sing, she welled up too because she knew there was no way we were an accident.

In October, almost 5 months after I last saw her, I made it into Bristol. I waited outside for a few minutes before I turned to her husky voice calling me and her mother just behind her. I hugged her so tight! Not too tight, though. I knew she was still tender and I was afraid to hurt her. Her mot showed me up to the room which was home for the entire time she spent away from her old, normal life. I saw the giant Gromit statues painted all around the hospital, the ones from her photos and I smiled.

Through my time there, I was introduced to Leah’s new way of life, a life she was soon to leave behind. I met her nurses, doctors and tasted the tray-bakes they loved to share- fifteens, without the cherries. She asked to me tweeze her eyebrows. She joked at how although her hair was missing, her eyebrows didn’t co- operate, and if I made a mess of them, we could blame the chemo. That’s the kind of person she way. She wasn’t afraid to laugh amidst the adversity; to see the joy in life. I painted her nails. She liked to have her nails painted to mask the discolouration from treatment. I stayed a few hours, just to be with her. To see rest in the face of the girl who saw life as beauty everywhere. To see her smile in my company made me feel amongst royalty.

We never finished that last conversation. I never prayed with her that last time as was the only desire in my heart. We didn’t take a final selfie together. As the cannula in her arm spilled a pint of blood right before she got up for a scan, my empty stomach rushed me to the toilet as she was escorted to a familiar area of the hospital, which was of course in another building. The nurses refused to let me follow her until it was certain I wasn’t going to faint. An unfamiliar labyrinth of corridors met me and 20 minutes later my lift out of Bristol arrived. I stood outside contemplating running back inside only to be greeted with a beep of the horn and a text simultaneously- from Leah: “Where did you go? I’m back in my room now. Can you come back??” But I couldn’t. And that’s the way it went.

She came home again, to a new house. But home is where we belong and she belonged with her mother and father, her brother and sisters. Her friends and boyfriend.

On Boxing Day, Leah took difficulties breathing. They realised it was a difficult infection in her lungs, complications after treatment. She spent her sixteenth birthday in isolation on a ventilator and posted a selfie with her mummy. That’s who she was. She loved through everything that was against her.

On January 16th, sixteen days after her birthday I received a text from her mother reading “At…pm today, Leah went to be with her Lord…” and I collapsed. I wasn’t as strong as she had been all that time. She went home then. Real home; home to her Father. The One who taught her perseverance, to battle, to love unconditionally as she was loved unconditionally. Taught her to find joy amongst the pain. And she taught me. That’s who Leah was.