Rescue Me

Leah is gone from our lives 6 months today, so last night I did something I’ve been wanting to do for a while – I watched My Sister’s Keeper with Miriam, my youngest daughter. The last time we watched this film was with Leah, before she became ill.

I’m glad that Leah’s illness and suffering wasn’t prolonged like it was portrayed for the girl in this film.

Leah was unwell for just over 12 months.

I’m glad that I never had to make any difficult ethical decisions either.

I’m especially glad that when Leah was in an ‘end of life’ situation, that God gave me the grace and the strength to let her go and hand her over to her Heavenly Father.

When Leah became critically ill, I was able to talk to her about the possibility of death.

Leah would never have felt that death was a forbidden conversation topic, although of course I was praying for a miracle of healing as that is what I wanted most of all.

This time last year we were packing to go to Bristol. It was a time of fear and excitement.

More excitement than fear to be honest, because I really believed that through prayer, a bone marrow transplant and the amazing expertise of the haematology staff at Bristol Children’s Hospital, that Leah was going to recover.

Any fears I had at that stage, were fears of the “unknown” rather than fears of Leah not recovering.

This is a photo taken of Leah, Miriam, and I, as we were leaving the house to go to the airport to fly to Bristol on the 21st July 2013.

We had been told that Leah’s chances of recovery were 70% and that sounded quite good to me.

Recent research that was revealed to us since Leah died, would suggest that someone with Leah’s constellation of symptoms and her specific genetic mutation, only has a 50/50 chance of survival.

I’m really glad that we weren’t told THAT when she was alive. It’s important to hold onto hope and it’s easier – though certainly not impossible – to hold onto hope with a 70% survival statistic than with a 50% survival rate.

So what have I learned in the past 6 months?

I’ve learned that when Leah first died I was too numb/busy/exhausted to really understand the extent of my loss.

It’s only as time goes on that I’m realising how wide, high and deep is our loss.

I’m learning that emotional pain can be relentless.

I’ve learned that small unpredictable things will often cause me to fall apart quicker than the big predictable things – catching sight of one of her favourite foods on promotion in the supermarket often reduces me very quickly to tears. Since she was a toddler Leah loved shopping and invariably accompanied me on shopping trips – now I shop only out of necessity.

Sometimes I feel like I’m standing on the edge of a great abyss of emotional pain and grief.

However I’ve also learned that sadness and joy can coexist in my heart – I’m not sad all the time – there’s many happy moments too with family and friends and I definitely haven’t lost my sense of humour.

I’ve learned that I know some amazing people – people who have surrounded me and my family with their loving support on this sad and painful journey.

I’ve always been a very independent person but I can’t be so independent any more – I rely on emotional support from those around me a lot more than I used to.

I’ve discovered first hand the value of counselling – sometimes my weekly counselling sessions feel like an oasis in the desert – a safe place where I can talk about anything that I need to talk about.

I’m learning more about my relationship with God too – some things I’m less sure of and other things I’m more sure of, but I couldn’t get through any of this without Him.

I read my Bible every day and I use devotional readings, but I still find prolonged prayer difficult.

I continue to find worship songs the easiest way to connect with God and they often become my prayers.

The song that I have recently been listening to on ‘repeat’ is “Rescue Me” by Selah – the lyrics are amazing because they echo the cry of my heart:

Deep is the river that I have to cross
Heavy the weight on my shoulder
I have discovered how great is the cost
Of trying alone to cross over
I try and I try but the current’s too strong
It’s pulling me under and my strength is gone
Don’t leave me stranded

Rescue me, my God and my King
Water is rising and I cannot breathe
Wrap Your arms all around me and
Carry me over, carry me over
(Rescue me)

There is a bridge that is easy to cross
While all of our burdens are lifted
Peace is the land that is waiting for us
Lord, give me faith to believe it
Cause I’m in a storm but I’m willing to fight
I’ll overcome and I will not die with You by my side

Rescue me, my God and my King
Water’s are rising and I cannot breathe
Wrap your arms all around me and
Carry me over, carry me over
(Rescue me)

Our God in Whom we Trust

It was on the last Thursday of June 2013 that Dr C phoned from Bristol to tell us the results of Leah’s gene sequencing. They had just discovered that her myelodysplasia and monosomy 7 had been caused by a GATA2 genetic mutation. This was not good news for several reasons. I have discussed this in detail in my blog post Gata2 Genetic Mutation
This genetic defect worsened her prognosis. The bone marrow transplant could eradicate Leah’s myelodysplasia, but no medical treatment could ‘fix’ the defect in her DNA. The long term implications of this weren’t entirely clear though as GATA2 mutations are a fairly recent discovery and research is ongoing.
The following day our lovely Belfast consultant phoned me. In his gentle Armagh accent he asked me how we were coping with this latest turn of events – I told him two things. I said that firstly we had the utmost confidence in the skill and dedication of both himself and our Bristol consultant and therefore we knew that Leah was in good hands. Secondly I told him that our God in whom we trusted would give us the strength to deal with whatever lay before us.
Prophetic words indeed………

What if Your healing comes through tears?

Bristol Children’s Hospital

On Friday 14th June 2013 Horace, Leah, Simon, Miriam & I went to Bristol Children’s Hospital for Leah’s first outpatient appointment there.

I faced this appointment with a mixture of fear and excitement – fear of the unknown, but excitement because this was the Centre of Excellence that had the potential to save Leah’s life. I knew that the day long appointment in Bristol would involve Leah & Simon having various tests & I imagined that the rest of the time would be spent meeting staff and having a tour of the facilities.

What I didn’t know was that we would spend approximately three hours with Dr C – the most amazing, most knowledgeable, most respectful & most compassionate hospital consultant I have ever met.

However, during this time he told us many things that we didn’t want to hear – about Leah’s diagnosis and prognosis. He gave us detailed information about the treatment Leah would receive and the short, medium and long term risks of this treatment & he talked about the possible genetics of her situation, which sounded scary.

Meantime Miriam was elsewhere playing happily with kids with bald heads and some with nasogastric tubes, with the support of a lovely Play Therapist.

I had asked for Simon to be excused from the discussion but was told that the law states that the marrow donor has to hear all the gorey details regarding the patients prognosis/treatment so that if the bone marrow recipient dies the donor will know that it was their illness/treatment that killed them & it was nothing to do with the marrow donation.

My husband took weak listening to all we were told and had to lie down while Dr C went and got refreshments for everyone.

My head was reeling.

Leah remained calm & cheerful throughout.

We had a short break for lunch & went to McDonalds.

The kids ate well – I felt ill & overwhelmed.

That evening at the airport I had an overwhelming urge to vomit – I wanted to purge my body of everything we had been told about this disease process that had taken residence in my beautiful daughter’s body and all that this implied for her future.

While waiting for our flight to be called I went off on my own for a short time & stuck earphones in my ears & put the song “Blessings” by Laura Story on continuos repeat.

She wrote this song after her husband was diagnosed with a brain tumour. It is a song that brought both Leah & I great comfort in times of stress & confusion:

Thankfully the next day was “FocusFest” in Belfast and although I was very tired from two nights of very little sleep, it was so good to be there amongst hundreds of women worshipping & praising God & my soul was gradually restored.