The Bells of Christmas

The Bells of Christmas

Christmas bells

Christmas Eve – this time two years ago the rest of the family moved in to our new house. All six of us slept together under the one roof for the first time in six months. I went to bed feeling so happy, so content, so ‘full’.

Within four days the bells of Christmas had been replaced by the ‘bells’ of the monitors to which Leah was attached in the Intensive Care Unit where she had been admitted as a result of respiratory failure.

Leah in ICU


Every time Leah’s blood oxygen levels dipped, the monitors chimed and my heartbreak intensified. For the first five nights I slept in a chair beside Leah. During one of these nights there was a medical crisis and the monitors alarmed almost continuously. In the morning the staff looked at me in amazement and asked me how I had slept through the whole commotion. I shrugged my shoulders and gave a vague answer. In actual fact, I had been well aware of what was happening but I had kept my eyes closed and had held my daughter’s hand (whenever I wasn’t in the way) while praying silently. I was worried that if the staff knew that I was awake that they would put me out of the room and then I wouldn’t be there to comfort Leah.

Many days as I sat quietly holding Leah’s hand, with her favourite music playing softly in the background, the chimes of the monitors would intrude unpleasantly on our thoughts – reminding us of what we didn’t want to be reminded about – that Leah’s life hung in the balance.

Finally on the 16th January 2014, when Leah had been transferred to the Children’s Hospice for her end of life care, a monitor started to sound an alarm as the life seeped slowly from Leah’s body – swiftly and silently the doctor pressed the mute button on all of the alarms. We didn’t need them now, as sadly for us, the time had come to let Leah go peacefully into the waiting arms of her loving Heavenly Father.

Now I live and ‘celebrate’ Christmas in a dichotomy – one part of me is overwhelmed with the sadness of Leah not being here, yet the other part of me celebrates the birth of the Christ Child and the many blessings with which God has enriched my life.

Each one of our four children is a blessing in my life. My friends and my family who surround me with love and comfort are a blessing. Having a job that I love and work colleagues whose company I enjoy is a great blessing. I have a beautiful house which is a blessing.

Let the words of Chris De Burgh be my Christmas greetings to you, my faithful readers:

The Bells Of Christmas

If you know someone who is lonely this Christmas,
Reach out a hand and open the door,
Bring them inside in the spirit of Christmas
And show what lies in store;

If you know someone who’s forgotten that Christmas,
Will always shine in the eyes of a child,
Open their hearts to the memories of Christmas
And take them back in time;

So have a very Merry Christmas everyone,
Celebrate the coming of the newborn son,
Everywhere this happy day we have begun,
To ring the bells of Christmas;

Let the light that shines with the wonders of Christmas,
Fill every heart all over the world,
Let us believe in the spirit of Christmas
And dream of peace on earth;

So have a very Merry Christmas everyone,
Celebrate the coming of the newborn son,
Everywhere this happy day we have begun,
To ring the bells of Christmas;

Have a very Merry Christmas everyone,
(Ring the bells)
Celebrate the coming of the newborn son,
(Merry Christmas)
Everywhere this happy day we have begun,
(Ring the bells)
To ring the bells of Christmas,
(Merry Christmas)
Ring the bells, ring the bells!

 

What if Your healing comes through tears?

What if Your healing comes through tears?

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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.

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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:

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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.