Going Purple at Sixty

“But what is grief, if not love persevering?”

Wandavision

Grieving the loss of a child doesn’t end after a year, two years or even after eight years. Leah’s absence is everywhere I turn. There isn’t a day that goes by that I don’t miss her presence in the life of our family. I will continue to be a mum of four, even though one of the four is no longer on this earth.

Although I miss Leah every day, some days are harder than others: her birthday, her anniversary, my birthday, Christmas, Mother’s Day, family weddings, special family events and get-togethers. It matters to me that Leah continues to be included in our family events. Our youngest turned 18 last year. As part of her birthday celebrations, she and I went together to get our first tattoos – we each got one in memory of Leah.

“Death ends a life, not a relationship. All the love you’ve created is still there. All the memories are still there. Your loved one lives on in the hearts of everyone they have touched and nurtured while they were here.”

Morrie Schwartz

Today is my 60th birthday. As part of my birthday celebrations, I had my hair dyed purple to raise much-needed funds for the (NI) Children’s Hospice.

On the 16th of January 2014, Leah died in peace and dignity at the (NI) Children’s Hospice, surrounded by love. Leah can’t be here today to celebrate my birthday but I know that she would totally approve of how I’m celebrating it; Leah loved children and she had a heart of compassion, especially for children and young people who face additional challenges in life.

Thankfully, due to the incredible generosity of so many people, I have exceeded the target that I initially set for my fundraising appeal. However, if anyone hasn’t already contributed and has the financial means to do so, the fundraising appeal is still open at JustGiving.

After 60 years of living I can say with certainty what matters most to me in life: relationships. My greatest joy comes from spending time with those I love ~ God, family, friends. Thankfully 2022 has been very kind to me so far with regards to this.

LHS COLOUR RUN 2016

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.

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.

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.

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.

A Haze, a Daze and a Maze

My husband says that the past two years since Leah took ill and died, have been like a haze, a daze and a maze.

This weekend we’re having a family break, along with other bereaved families, at Daisy Lodge in Newcastle, Co. Down. I write here about our first visit to Daisy Lodge, last year.

What is the purpose of a therapeutic short break at Daisy Lodge?

According to the N.I. Cancer Fund for Children website:
“At Daisy Lodge we aim to restore a family life that’s been uprooted by cancer. Short breaks provide exhausted families with the chance to spend quality time together after many months spent in isolation or on the hospital ward. They will be able to recharge their batteries, increase their sense of well-being and gain support from the charity’s Therapeutic Specialist. They will also get the chance to meet and gain support from other families in a similar situation.”

After lunch today Horace suggested that we went to Castlewellan Forest Park to check out their Maze.

It sounded like a fun idea ………. until we became hopelessly lost and it suddenly started raining very heavily.

We found that we were going around in circles and facing a lot of dead ends.

Life’s like that sometimes – lots of going around in circles with lots of dead ends and the downpours just keep on coming.

At one stage, we thought we’d found an exit, but it wasn’t the right one, it was locked, there was no escape – from the maze or the rain (or the camera)!

When Leah was diagnosed, she said that we “had to see the bigger picture” but sometimes it’s very hard to see the bigger picture. Depending on what difficulties we are going through, all we see is sadness, frustration and no hope.

It can be so incredibly difficult at times to remember about that bigger picture.

In my Bible reading this morning I was struck by this verse in Romans 14:13

“May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit.”

Sometimes in this world there is very little hope and joy.

I thought about that this week too as I stood sobbing at Leah’s grave, two nights in a row, gazing at one of her favourite Bible verses on the kneeling plate there:

I try so very hard to cling to hope, joy and peace, but sometimes I feel utterly defeated by life’s circumstances.

Eventually today, we got out of the maze, the rain stopped and the sun shone.

We climbed up to the viewing bridge and how different everything looked.

It occurred to me that maybe that’s what God sees when he looks at our lives – not just a bunch of crazy, random “happenings“, but a “bigger picture” that He is working together in us for a greater purpose. (Romans 8:28)

A bigger picture that will one day all make sense, probably not in this life, but when we meet Him face to face.

Then, before the rain made it’s inevitable reappearance, we explored a little bit more of this magnificent estate.

I loved the children’s adventure playground, with it’s natural colours, carved animals and a refreshing deficit of brightly coloured plastic.

After this we headed to the lake. The walk right round it is just over two miles, but by now the sky behind us was getting dark again and we had only just dried off so we didn’t fancy another soaking.

On our way back to our car, we noticed a quaint looking café and the prices seemed reasonable, but we are so well fed at Daisy Lodge that stopping, even for a snack, was out of the question!

We are blessed to have this time out together as a family, kindly provided for us by the N.I. Cancer Fund for Children and the many people who fundraise for them.

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.

“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.

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.

“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.”

 

LHS Fundraising for Leah 2013

In the Spring/Summer of 2013, after Leah was diagnosed and before she had her bone marrow transplant, her classmates organised various fundraising activities in the school and presented Leah with a very generous cheque. Simon, as bone marrow donor, also received a financial gift from them.

This and the many other practical expressions of people’s love and support that we received were so very much appreciated and have helped to make our journey a little easier. One of Leah’s school friends put together this video last year but I only came across it recently.

All together at last

When Leah was diagnosed we were told that post transplant she couldn’t be discharged back to our existing house as we had a severe problem with mould and damp in the bedrooms.

Hundreds of pounds & a government grant had been spent trying to eliminate this problem but it kept coming back.

Fortunately we had a half finished house in the garden with an indefinite completion date.

The furniture from Leah’s existing bedroom was crumbling due to the damp, so our friends and neighbours organised a fundraising drive to raise money to equip Leah’s bedroom in the new house with everything she could possibly need.

There was an awful lot of work needing done to the new house before anyone could live in it.

While Leah and I were in Bristol, my husband Horace along with many relatives and friends worked long hours to get the new house into shape.

Meantime Leah sat on her bed in the Bone Marrow Transplant unit and ordered all her new bedroom furniture & bedding from Dunelm Mill online – she was so excited.

When we had got back to Belfast, Rachel, our eldest, toured Leah around Ikea in a wheelchair on a quiet Monday morning to get the finishing touches.

Leah needed a desk at which to study for her GCSEs and a comfortable desk chair.

When the time for our homecoming was near friends and family were busy cleaning, making beds (literally) and hanging curtains.

Finally on Monday 11th November ’13, Leah and I moved into our new house.

Leah absolutely loved her new room with its own ensuite facilities.

Everything was designed to protect Leah’s frail immune system and to help her convalesce

.

At this stage a lot of the house was as yet unfinished so only Leah & I could live there initially – the rest of the family lived nearby in the old house.

Our goal was to be together for Christmas.

There were days when Horace & I wondered how that goal was ever going to be achieved.

Again we relied on the generous help of family and friends.

Finally on Christmas Eve, the other bedrooms were ready and we moved the furniture in.

That night, for the first time since the 26th June ’13 the six of us were sleeping under the one roof.

My back was sore from lifting & carrying but I felt such an immense sense of relief that we were all together at last.