Missing Kylie by Mark Myers ~ a book review

Those who know me well will know that I love reading and tend to buy more books than I have time to read. On the 7th April 2016 Mark Myers published his account of a two year journey ‘through the wilderness of no‘.

On the 9th April 2014, the youngest of Mark’s daughters, Kylie, aged 12, was diagnosed with Ewing’s Sarcoma. She had always been known as Smiley Kylie. Kylie fought her illness bravely for ten months. On February 13th, 2015, Kylie’s battered body succumbed to the disease. She left her family with two missions; take care of her kitten and kill childhood cancer so that no other child has to die.

Our daughter was also a cat lover, but sadly her beloved cat Charlie died on the road while Leah was having her treatment at Bristol Children’s Hospital. Apparently Charlie missed Leah terribly while she was in hospital, as he was so used to receiving lots of cuddles from her.

Mark’s blog came to my attention just before Easter this year when I read his blog post The Empty Grave Conundrum. I wept profusely as I read, identifying with almost every word.

I tried to resist the temptation to buy his book Missing Kylie: A Father’s Search for Meaning in Tragedy as soon as it was released, as I have so many unread books adorning my shelves. I succumbed on the 12th April and I read it over two days.

This is one father’s account of  his two year journey from the day that Kylie received her diagnosis up to the first anniversary of her death. Kylie’s response to her diagnosis was similar to Leah’s; Kylie said “God must have a really big, great plan for me.” Leah lived nine months from her diagnosis, ‘Smiley Kylie’ lived ten months. Just like Leah, the primary cause of death cited on Kylie’s death certificate is respiratory failure.

Mark has three main aims with his book:

1) To share the story of his beautiful brave daughter Smiley Kylie with a wider audience.

2) To share his ‘messy faith’ with hurting people in a genuine and authentic manner.

3) To raise money and awareness for safer and more effective treatments for childhood cancer.

Mark achieves all these aims and more besides. This is a very readable book that I could not put down. I read it over two days. Mark is honest and genuine without giving unnecessary medical details that could make it difficult reading for those who are a bit squeamish. The love within this family of six is so evident.

I especially loved reading the letters that each family member wrote to Kylie on the first anniversary of her death. Mark concludes the book with three short chapters that contain guidelines for how to support a family who are dealing with a difficult diagnosis or life-threatening illness. One of these is entitled ‘What to say when there is nothing to say.’

I highly recommend this book.

The Bells of Christmas

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.

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!

 

Christmas Lights

Every year, soon after the Christmas lights were switched on in Derry, it was always a treat to head over town after dark with the kids to admire the lights – driving around the streets and gazing in wonder at how different the City Centre suddenly looked.

This year however is so different. I have so much pain in my heart. Everything to do with Christmas just takes me back to this time last year and when our Christmas ended so abruptly on Friday 27th December. The day that resulted in the chimes of Christmas bells being replaced with the chimes of the ICU monitors.

Those monitors to which Leah was attached seemed to alarm constantly – telling me what I didn’t want to hear – that despite the best of medical care – despite every treatment they could think of trying – Leah’s lungs were failing.

This evening I went into the City Centre briefly on my way elsewhere. As soon as I got out of the car I noticed the Christmas lights and a wave of grief swept over me. I was reminded once again of the incompleteness of our family.

I headed into Poundland and quietly sobbed my way round the aisles. I quickly found and paid for the items that I had come for and headed back to the car.

The Christmas lights looked so beautiful. They reminded me of year after year of bringing our children over to see them. I used to be as excited as they were.

When the children were really young, we used to head up the Culmore Road and also go to Hatmore Park, to see some houses that were amazingly decorated like the houses you see in films on TV – it used to be part of our Christmas ritual as a family. Horace used to bring the camcorder in those days, to record the children’s wide-eyed wonder and excitement.

Since Leah died I’ve re watched all our family videos, lingering over precious memories untainted by sorrow. It’s so lovely to have these memories. Every photo, every piece of video footage, is now so very precious.

All I can say is, I’m glad that Miriam and I are being given the opportunity to go to Lapland for the day this December, because otherwise that poor child would be seeing very little “Christmas cheer” from her mother!

I love this song from Michael Card:

Come Lift Up Your Sorrows

If you are wounded, if you are alone,
If you are angry, if your heart is cold as stone,
If you have fallen and if you are weak,
Come find the worth of God
That only the suffering seek.

(Chorus)
Come lift up your sorrows
And offer your pain;
Come make a sacrifice
Of all your shame;
There in your wilderness
He’s waiting for you
To worship Him with your wounds,
For He’s wounded too.

He has not stuttered, and He has not lied
When He said, “Come unto me, you’re not disqualified”
When your heavy laden, you may want to depart,
But those who know sorrow are closest to His heart.

In this most Holy Place
He’s made a sacred space
For those who will enter in
And trust to cry out to Him;
You’ll find no curtain there,
No reason left for fear;
There’s perfect freedom here
To weep every unwept tear.