An Unexpected Treat

An Unexpected Treat

We weren’t expecting to be able to avail of a therapeutic short break for bereaved families at Daisy Lodge this Summer. We had the privilege of being there for Mother’s Day earlier this year. We also had the opportunity of a short break there the past two summers. We felt that now that it’s been over two years since Leah died, that maybe it was time for us to step back and let other more newly bereaved families benefit from this amazing facility.

Then last Wednesday, out of the blue, we got a call to say that there had been a cancellation and they were offering us the option of going there at the weekend, if we were available.

My heart leapt with excitement. I quickly scanned both my work calendar and my personal calendar. Thankfully any commitments we had were ones that could easily be rescheduled. Simon unfortunately was unable to accompany us and Rachel couldn’t stay the entire Friday until Tuesday, due to her work commitments. Other than that we were good to go.

I couldn’t stop smiling for the remainder of the week, eagerly anticipating this most unexpected treat. When we first went to Daisy Lodge in 2014 I found it a very emotional experience. I probably cried for most of our first stay. Just being there was such a stark reminder of the journey that we were now on, one that I definitely didn’t want to be on.

However I now primarily look on Daisy Lodge as a place of healing for me and my family. A place where each of us is helped to relax and to heal, a place where we are encouraged to have fun interacting with each other, to feel like a family again, after the trauma of witnessing Leah endure such gruesome treatments and then eventually die. Daisy Lodge is a place where we feel supported, both by the compassionate staff who are on duty 24/7 and by our interactions with the other families who all walk a similar road. A place where no explanations are ever necessary.

Daisy Lodge.jpgI know from talking to other bereaved parents on private forums, that the devastation of child loss often results in the fragmentation of family relationships. A therapeutic short stay at Daisy Lodge goes a long way towards the healing and rebuilding of these fragmented relationships.

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On one of the days during our stay this past weekend, we went into Newcastle to the Pleasure Lands Amusement Park (Rachel’s boyfriend Matt also joined us that day). Horace’s face was a study as he and the ‘kids’ spun wildly on the Waltzers. It was his turn to laugh at my facial expressions when I went on the Roller Coaster with Rachel and Matt.

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Despite all the spinning around, our stomachs were settled enough to indulge in some award winning Maud’s ice cream while we were in Newcastle.

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That night there was a “Photo Booth” back at Daisy Lodge, where Horace and I were ‘swallowed by a big fish’!

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On Monday morning Horace and I enjoyed a trip to the nearby Burrendale Hotel swimming pool and spa. I tried to compensate for all the wonderful food I’d been eating all weekend by swimming 22 lengths of the pool, but before you start thinking that’s really impressive I need to tell you that it’s quite a small pool, not an Olympic sized one!

Monday afternoon saw Horace and I engaging in archery – the last time I recall shooting with a bow and arrow was while staying with my cousins in Clonmel, Co. Tipperary, when I was about ten years old. We used to make our own bows and arrows in those days, then climb trees and shoot. The ones at Daisy Lodge weren’t homemade of course. I was so engrossed in competing against my husband during the archery session that I forgot to take any photographs, but he beat me anyway!

Monday evening the four of us participated in a craft activity and worked together to produce these:

Craft Activity

Tuesday morning it was time for the four of us to say a fond goodbye to the staff and the other families. We were by now well rested, well fed, refreshed and ready to face the world again. Thank you to the Cancer Fund for Children for once again refuelling us on this most difficult of journeys.

God on Mute

 

Mother’s Day Weekend 2016

Mother’s Day Weekend 2016

We as a family are indebted to the Northern Ireland Cancer Fund for Children for their help and support. We have once again benefitted from one of their amazing therapeutic short breaks at Daisy Lodge in Newcastle, Co. Down.

I’ve previously written about our trips to Daisy Lodge in Daisy Lodge, Back to RealityParenting Teenagers, The Gaping Hole of Grief, and in A Haze, a Daze and a Maze.

On Tuesday 30th April 2013, when Leah’s Haematology Clinical Nurse Specialist at Altnagelvin Hospital told me about the NICFC and suggested referring us to them for support, I had no idea what that support would look like.

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Leah before she became ill

Initially we were allocated a Specialist Worker. Our Specialist drove the 70 miles from Belfast to meet with our family and we warmed to her straight away. Our initial contacts with her were of the “getting to know you” variety, as she assessed what our needs were and explained to us what help was available.

When Leah and I returned from spending 14 weeks in Bristol, traumatised from all that had happened, our Specialist was there to support us. Within days she pulled up in her car and took Leah and I out for afternoon tea in a quiet location. The cafe had a gift shop attached so we browsed there too. After so many weeks of sickness and hospitalisation, it felt abnormal to be doing normal things, but it was very helpful to be doing them in the company of somebody who understood our journey and who could support us emotionally.

Leah was immune compromised and unwell and she had to spend a lot of time at home in her bedroom. Our Specialist understood how boring this would be for a teenager, she talked to Leah to find out her interests and started her on jewelry making. Our Specialist provided the materials and Leah was able to make gifts for some people that Christmas.

Then, during the 2.5 weeks that Leah spent in ICU in Belfast City Hospital before she died, our Specialist spent time with me, in the hospital cafe, providing me with emotional support and giving me time to talk.

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Leah in December 2013, three weeks before she died

After Leah died, our Specialist kept in touch with us and she ensured that we as a family availed of the therapeutic short breaks at Daisy Lodge in Newcastle, Co. Down.

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It’s very difficult to be a parent when you’re grieving and your heart is broken – potentially every family member becomes ‘lost’ and isolated in their grief and sadness. It’s very difficult to do things together as a family when the very act of doing so is such a painful reminder of the one who is missing.

Coming to Daisy Lodge as a family has become a vital part of our healing. When we are there, the five of us sleep in adjoining rooms so we are constantly in close contact.

All meals are provided so there isn’t the distraction of shopping/preparing food/cleaning up – we are there simply to enjoy each other’s company.

While staying at Daisy Lodge, parents and adult children are offered a complementary therapy session (massage/reflexology), to ensure maximum relaxation. There’s usually an opportunity for the Mum’s and older girls to get their nails or makeup done as well.

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Always, in the background, the therapeutic specialist staff are available to listen and to support. There are optional group activities that all the family can take part in. It really helps to know that on all occasions you’re in the company of people who understand; whether you are interacting with the other families staying there or with the courteous and compassionate staff.

This past weekend our girls played board games in our bedroom on the Saturday morning – that would NEVER happen at home.

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Saturday afternoon all five of us went for a walk at Tollymore Forest Park, when we are at home we’d be doing well to even get two family members agreeing to do anything together.

At Tollymore, Simon and Miriam displayed a newfound interest in nature photography!


We chatted, we ran, we laughed, we remembered, we healed another little bit.

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Then we (minus Simon – his computer beckoned) headed into Newcastle for Maud’s Ice-cream – it was yummy!  

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After a delicious evening meal back at Daisy Lodge (we will be rolling home) Miriam, Rachel and I put on Lush face masks and then they both gave me a massage as one of my Mother’s Day treats.

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After this, Horace and Rachel headed off to use the sauna downstairs.

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Later on Horace and Simon played a game of pool together. I was feeling very relaxed (!) and said that I would just lie in bed and rest my eyes for a little while. I must have been very relaxed because I fell into a deep sleep and had the best night’s sleep that I’ve had in ages. I didn’t even hear any of them coming to bed.

Sunday morning (Mother’s Day) us mums had a choice between getting our makeup or our nails done. I already knew what I wanted. Leah loved painting her nails and she used to paint my nails too. I seldom wear nail varnish since she died. Getting my nails done would be a special way of remembering her on Mother’s Day.

Each mum also received a gift bag of treats. I waited to open mine until I was back in the room with my girls. Rachel and Miriam gave me a Yankee Candle. I love candles.

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Then there was just enough time for a relaxing bath, with one of the Lush bath bombs that my eldest gave me for Christmas, before heading down for dinner.

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Sunday lunch, as always, was truly scrumptious.

Sadly after dinner it was time to pack up and say goodbye – Rachel back to University life in Belfast and the remaining four of us back to our home where our two younger children rapidly became their usual monosyllabic selves and retreated to their caves bedrooms absorbed in their electronic devices. However, I feel so rested and relaxed and I have lots of happy memories and gorgeous photos.

The Cancer Fund for Children support:

  • Children who have been diagnosed with cancer
  • The siblings of a child who has been diagnosed with cancer
  • The parents of a child who has been diagnosed with cancer
  • A child whose parent has been diagnosed with cancer

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We as a family very much appreciate the fundraising efforts of so many people who have walked, swam, ran, cycled, abseiled, done parachute jumps or given their loose change to support the Cancer Fund for Children.You are helping to bring healing to families whose lives have been ravaged by a cancer diagnosis.

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Does God Answer Prayer?

Does God Answer Prayer?

Recently my husband was speaking to somebody whose wife had a cancer diagnosis and asked him how his wife was doing.

This man replied that his wife was doing really well and had returned to work. He finished off with the statement “God answers prayer.

That kind of took our breath away. Not the fact that his wife is doing well – we are very happy about that.

It’s him telling us that all of this happened because God answers prayer.

Do people think that we didn’t pray for Leah to be healed?

Do they think that our prayers weren’t good enough?

Or was it just a throwaway comment, expressing his faith in God and not in any way meant to undermine ours?

Once I had calmed down, I reasoned that the last explanation is the most likely.

We’ve encountered many and varied responses from people of faith to the fact of Leah’s death.

One leader in a church that I occasionally go to, informed me a few months after Leah died, that she had died because of “lack of faith”.

He then quoted the Bible verse

Mark 6:5 NLT
And because of their unbelief, he couldn’t do any miracles among them except to place his hands on a few sick people and heal them.”

You see, for some people, the illness and death of a child doesn’t fit into their neat “I’ve got all the answers” theology.

Even before Leah became ill, I never liked the idea of confining God to a denominational box.

In my opinion, God is way bigger than our pet doctrines and statements of belief.

Yes, I do believe in belonging to a local church and getting involved in the body of Christ.

The Bible says in Hebrews 10:25 GW

We should not stop gathering together with other believers, as some of you are doing. Instead, we must continue to encourage each other even more as we see the day of the Lord coming.

It’s just that I don’t like the idea that any one denomination has got exclusive rights to God.

I think that God is way bigger than the boxes that we sometimes try to squeeze Him into.

For the record, I do believe that God answers prayer. I continue to pray regularly for many people who are unwell.

I don’t know why some people get better and others die.

I don’t believe that Leah died because of “lack of faith”.

Leah herself certainly did not lack faith.

There were hundreds of churches and thousands of Christians praying and believing for Leah to be healed.

However, God isn’t like a genie in a lamp. It isn’t as simple as us just telling God what we want and then abracadabra – we want it, so we’ve got it.

The Bible says in Isaiah 55:8-9 NKJV

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There are some things in this life that are always going to be a mystery.

Meet Mr Wiggly

Meet Mr Wiggly

Early on Monday 1st July 2013 Leah was admitted to the Cancer Centre in Belfast City Hospital for a repeat bone marrow biopsy and to have a double lumen Hickman central line (Mr Wiggly) inserted.

It was Leah’s first admission to BCH and she had a spacious ensuite single room, with a folding camp bed for me. There was a steady stream of professionals in and out of her room and everyone was absolutely lovely. We were really well looked after.

 

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By early evening Leah was well recovered from her anaesthetic but still had enough pain relief in her to keep her comfortable.

Leah loved her food and was feeling peckish, although she’d had her tea. By the time I had organised myself to go looking for a shop, the hospital shop was closed, so I walked down the Lisburn Road until I found a wee corner shop that was open.

I had left Leah happily “snap chatting” her friends on her new iPad. I brought her back an ice cream, a fizzy drink, a bar of chocolate and a muffin.

Leah was delighted and probably amazed that her mother would voluntarily buy her so much rubbishy food. However, as a nurse myself, I was well aware of what the near future held for Leah in terms of chemotherapy and side effects and a “clean diet”.

I was just glad to be able to do something “normal” like walk to a corner shop and buy her treats.

 

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The next day the doctor told us that the initial tests on Leah’s bone marrow aspirate showed no significant increase in the number of abnormal cells. This was absolutely fantastic news as myelodysplasia has the potential to rapidly transform into an aggressive form of acute myeloid leukaemia.

He said that they would be sending samples from her bone marrow biopsy to Bristol for further testing. It was September before I discovered that these further tests in Bristol had showed sinister and worrying changes in Leah’s bone marrow.

At the time though, I didn’t ask and wasn’t told, for which I am grateful, sometimes there’s a limit to how much bad news anybody can cope with.

Leah was discharged from hospital late afternoon on the Tuesday, with a very sore neck.

On the Tuesday morning Leah met Muriel for the first time, she’s the Presbyterian deaconess who provides pastoral support at BCH. Leah and I loved her instantly. The pastoral support from the chaplaincy team at the City Hospital is excellent. When Leah was very ill in ICU in January ’14 we very much appreciated all the pastoral support that we received, Leah just loved to be prayed with.

For the next few days Leah found the whole area around the insertion site of her Hickman line very tender and painful and she needed lots of pain relief.

We had begun the path of the “new normal” – invasive procedures and medication and side effects and more medication to counteract the side effects and so on and so forth.

 

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Our local community in Eglinton/Greysteel/Limavady held a fundraising evening for Leah on Saturday 29th June ’13. This was organised, almost single handedly, by a local woman called Margaret Moore who is blind.

It was very well supported by our neighbours, friends, relatives, local clergy and political representatives. Local businesses were generous in their donations. Leah was presented with a generous cheque. We appreciated not only the money, but also everybody’s friendship and kindness.

Shortly before this, our church, Kilfennan Presbyterian, had organised a “Prayer and Pudding Evening” in support of Leah. Over a hundred people, young and old, came to show their support for Leah.

There was an opportunity for private and group prayer. Many left financial gifts. There was also pen and paper to write a message or a prayer for Leah and post it in a box. Our church family worker then collated all of these into a beautiful book of encouragement for Leah to take to Bristol with her.

 

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Our church printed prayer cards for Leah and 1,500 hard copies of these were distributed and many more were distributed online and printed off.
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The clock was ticking. Now we just had to wait for Bristol Children’s Hospital to ring with a date for Leah’s admission for her bone marrow transplant.

The sooner, the better, we thought, so that we could get Leah’s treatment over and done with and all of our lives could return to normal.

Leah looked the picture of health, she had the most amazing doctors looking after her and thousands of people were praying for her. What could possibly go wrong? That’s where my thought processes were in July 2013.

I have since learned that not all people who are ill and dying actually look like they are ill and dying. I still think that Leah’s doctors are amazing – they did everything in their power to save her life.

Thousands of people prayed for Leah’s healing and I’m grateful to everyone who prayed and I don’t have answers or explanations, some things in life are a mystery.

I continue to believe in a God of love who had a perfect plan for Leah’s life and who has a perfect plan for mine too, although right now that plan feels anything but perfect.

 

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Solitude

Solitude

“Solitude begins with a time and place for God, and God alone. If we really believe not only that God exists but also that He is actively present in our lives – healing, teaching, guiding – we need to set aside a time and space to give Him our undivided attention.”
Henri J Nouwen

“Let all that I am wait quietly before God, for my hope is in Him.”
Psalm 62:5 NLT

Praying for a miracle?

Praying for a miracle?

I found this really helpful essay on praying for miracles…….

“It is one thing to be asked to pray for another person. I’m happy to do it. I want to do it. I must admit, though, I am not always faithful to do it. However, it is another thing to be told what to ask God for in the situation. I’ve noticed that often requests for prayer come with specific instructions on how to pray. I call it a “please pray for my predetermined positive outcome” request.
And while I’m questioning our accepted methods of requesting prayer, I’ve got to ask, why do we seem to make it our goal to get as many people as possible praying toward our predetermined positive outcome? Is it that we think God is resistant to doing what is good and right but can be pressured by a large number of people to relent and deliver? Do we think that the more people we recruit to pray for the same thing will prove our sincerity or improve our odds?”

Click here to read more Praying Past our Preferred Outcomes