The Butterfly

Some weeks I feel strong, brave, as If I am healing and It really is possible to live again after burying one’s child.

Other weeks, the scab on the wound of my grief gets knocked off and there I am, once again bleeding and grief-stricken.

So what happened this week to knock the scab off?

It wasn’t the dreaded school uniform shopping – having the help of my eldest daughter took the sting out of that task.

No, it was the AS Level exam results on Thursday that has left the wound of my grief once again raw and bleeding.

As my friends and work colleagues celebrated the success of their sons and daughters’ exam results, our family were once again reminded of our loss.

Usually, if I have a good cry before leaving for work in the morning, or even while driving to work, I can hold it together all day, but not on Thursday. I alternated between congratulating friends on their sons and daughters exam results and seeking refuge in the toilets at work, when it all became just too much.

I find that it takes time for the wound to scab over again. I remain fragile and tearful, unnerved by how quickly I can unravel.

Then today I discovered this photo of Leah taken in our Living Room in December 2013, just a few short weeks before she died. She was absolutely fascinated with this small tortoiseshell butterfly that was somehow surviving the winter. These butterflies normally hibernate from late September until the following Spring.

This butterfly was a lot like Leah in her illness – beautiful, gentle, but oh so fragile and struggling to survive. The butterfly lived for a couple more weeks, but sadly, like Leah, it eventually died.

It reminds me of the song lyrics that Leah quoted on her Facebook page in December 2012, a few weeks before that fateful blood test that changed all of our lives forever.

We have to see the bigger picture

On the 4th March 1969 Horace’s older brother David had his 15th birthday and became seriously unwell. This resulted in him having an appendicectomy and being diagnosed with a “progressive malignant tumour“. David was subsequently admitted to St Luke’s Hospital in Dublin and prayer was going up for his healing all over the world. Someone said “heaven is stormed with prayer”. Horace’s mother Charlotte stayed up in Dublin to be with David.

On the 17th July 1969 Horace’s mum read to David from Psalm 65, they prayed together and then he kissed her goodnight. At 5am the next morning David went to be with Jesus.

Charlotte said that “although grief-stricken, a great peace passed over me, the Peace that passeth all understanding – God had taken him home and now he was free from all his pain.”

Two years later Charlotte developed breast cancer. She went to be with Jesus on the 16th December 1982. Thankfully Charlotte wrote about some of these experiences in a little booklet that she called “Stepping Stones“. I have read and reread this booklet many times over the years. Leah also found it comforting to read. During Leah’s illness I took to carrying a copy in my handbag.

On Saturday 11th January ’14, for the first time since Leah’s admission to ICU the doctor told me that Leah’s chest X-ray showed a slight improvement. They had been telling me all along that Leah was unlikely to recover, but there were thousands of people all over the world praying for healing for Leah and I was hopeful. When I heard this positive news about Leah’s chest X-ray I was so sure that this was the miracle starting to happen and I was so happy – our little girl was getting better – she was going to live.

The next day when I went in to see Leah her condition had worsened and my heart sank. That evening I sat by Leah’s bedside, held her hand and reread Charlotte’s wee book. I read how heaven was stormed with prayer for healing for Horace’s brother David, but yet God chose to take him. I read these words written by Horace’s mother “This has cost me a lot to write but I believe it is what my Father wants me to do, hoping that it will help someone. By the way those four and a half months taught me many things. David and I grew very dear to each other. God is not only our Father, He is also a wonderful teacher and trusting in Him all must be well.”

There as I held Leah’s hand and listened to the swish of the ventilator pushing air into her lungs I silently prayed and asked God an almost rhetorical question “Lord, you aren’t going to heal Leah are you?”

The next day the deterioration in Leah’s medical condition continued. At midday Leah had to be anaesthetised to conserve her oxygen levels. My sister in law Hannah unexpectedly paid me a visit. As we sat talking outside ICU Hannah looked me in the eye and said “What’s your gut feeling about Leah?” In that moment I had to face the truth. I whispered the words “I think Leah’s going to die.” Hannah put her arms around me and prayed with me.

This wasn’t me admitting defeat or giving up – this was a moment of acceptance. This was the moment when I moved from giving Leah the best possible quality of life, to being able to ensure that Leah had the best possible end of life care. I thank God for everyone He sent to help us along the way.

When Leah was diagnosed she said “God has a plan for my life” and “we have to see the bigger picture” – I think that “bigger picture” was bigger than even she could ever have realised.