The Conflicting Demands of Motherhood

My youngest child is having swimming lessons with her primary school at the moment.

On the day that she is going swimming she needs me to plait her long hair.

She also had a series of swimming lessons with the school 18 months ago when Leah and I were away in Bristol.

Last week she said “You know Mummy, whenever you were in Bristol with Leah, the swimming instructor shouted at me because my hair wasn’t in a plait.”

This has really played on my mind since. I get upset every time I think about it.

I’m not angry with the swimming instructor – we all have a tendency to take situations at face value. We make judgments based on insufficient information.

I feel very sad that my 9 year old daughter was motherless for 16 weeks, (except for the two weekends when she got to visit us in Bristol.)

I asked Miriam how she managed the other weeks that she was going swimming with her class. She said that she got her daddy to put her hair in a ponytail. Then one of the other children on the school bus plaited it for her.

Being a mother is so important to me.

It’s what I’ve always wanted to be.

I work as a Parent Support Worker.

I’m passionate about such subjects as bonding and attachment.

Yet, I had to abandon my nine year old child (and my 14 year old and my 19 year old) for 16 weeks.

Then Leah and I were only home for six and a half weeks before she was admitted to Belfast City Hospital and we were gone again.

Two and a half weeks later I returned home without Leah, immersed in grief.

It is SO difficult and complex being a parent in this situation.

This in many ways is also the dilemma faced by many parents who have a child with a medical condition, a learning disability or a mental illness.

How do you meet the needs of your ‘ill’ child, without short changing your other children?

In many cases you can’t.

Quite often an exhausted mother tries to be all things to all her children and still ends up feeling that her best is never quite good enough.

When a child or young person has any kind of “additional need” it can put a huge strain on the family unit.

In reality I’ve only had to do this for a relatively short period of time. Some parents have to juggle the conflicting demands of the needs of their children throughout their parenting years.

For other parents it can be the demands of caring for an elderly relative alongside rearing their own children.

For many of us, life is far from ideal.

The life that we find ourselves living may be far removed from the script that we wrote in our heads in our idealistic teens or early twenties.

That’s where prayer comes in ………. and trust.

When we can’t be with the ones that we love, or provide for them in the way that we wish that we could, we can still pray for them.

We can trust them into God’s loving care, knowing that no matter how much we love them, He loves them even more.

We can trust that God knows what He is doing and that He has a good plan for each of our lives.

Prior to Leah’s transplant she had many hospital appointments in Belfast.

On some of these occasions Leah insisted on us visiting a Christian bookshop.

Unfortunately I am navigationally challenged, but Leah used to be my sat nav., I didn’t get lost when I was with her.

On one of our visits to the Faith Mission Bookshop the song “Forever Reign” by Hillsong was playing and we talked about how we both really liked that song.

Forever Reign

You are peace, You are peace

When my fear is crippling

You are true, You are true

Even in my wandering

You are joy, You are joy

You’re the reason that I sing

You are life, You are life,

In You death has lost its sting

Oh, I’m running to Your arms,

I’m running to Your arms

The riches of Your love

Will always be enough

Nothing compares to Your embrace

Light of the world forever reign

 

The GP Appointment

My husband found our 2012 Family Planner in our old house and left it lying on the kitchen table in our new house today. Of course I immediately flicked to December. There it is – so innocent looking – Leah’s GP appointment. The one that changed our lives forever.

She’d had some health concerns for a couple of months late in 2012 but Leah wouldn’t take time off school to go to the GP. When I phoned and asked for an appointment with our favourite GP during the school holidays, they gave us one for the day of Leah’s 15th birthday – 31st January 2012.

Our GP phoned on Thursday morning 2nd January ’13 to say that Leah’s blood picture was very abnormal and that I needed to bring her to the Health Centre immediately. I told her that we’d had a somewhat similar scare with Leah’s blood results when Leah was a toddler. Full investigations had been done then and nothing untoward had been found so I really didn’t see the need for a major panic on this occasion either. Leah was in Limavady being treated to lunch by her cousin and I would bring her to the Health Centre in the early afternoon.

When I took Leah to the Health Centre that day she had a full medical examination, eight blood tests and a urine test for Bence Jones protein. The next day the GP phoned to say that there was no evidence of leukaemia but that Leah’s bloods were very abnormal and therefore monitoring and investigations would be ongoing. I wasn’t unduly anxious at this stage.

However in mid February Leah’s blood results were in my opinion particularly alarming. I had phoned in for them shortly before leaving work at 5pm. After hearing them I just couldn’t stop crying. The various consultant haematologists involved in Leah’s care had assured me that Leah’s blood results weren’t consistent with any nasty bone marrow disorders, but I didn’t believe them. I wrote in my diary in February ’13 that I thought that Leah had some rare form of bone marrow failure.

The journey home from work normally takes me 30min max – that evening it took me 2hrs – I kept having to stop the car to cry. I was distraught – I just knew that something wasn’t right. I pulled into the darkness of a rural filling station that was closed for the night and sat there. I phoned an elderly very Godly woman who was then the Clerk of Session in our church – that means she was our most senior church elder. I told her everything. She prayed over the phone with me the most beautiful inspiring prayer – by the time she was finished I was calm enough to face home. I certainly didn’t want Leah to think that I was worried about anything.

In March 2013 Leah was sent for a bone marrow biopsy, but by this stage I had calmed down again. I was very reassured by our consultant’s words and his upbeat demeanour: “We’re only doing this test to put everyone’s minds at rest. We are 95% sure that we won’t find anything sinister in Leah’s bone marrow.” We waited four weeks for the results and the longer we waited the more convinced I became that there was nothing wrong.

On Friday 19th April 2013 @ 4.20pm I answered a withheld call and heard a doctor I had never met utter the words “Has anyone given you the results of your daughter’s bone marrow biopsy?” followed by “Leah has myelodysplasia and she needs a bone marrow transplant.”

I felt so angry and so betrayed.

Yet I knew in my heart and soul that there had been no mistake – I knew that this was the only diagnosis that could possibly make sense of Leah’s constellation of symptoms. The minute that doctor spoke, a little voice inside my head said “He’s right you know.” From January to March other possible diagnosis had been offered to us and somehow they just didn’t sit right with me, but this time was different – I didn’t WANT to believe it but I knew it was true.

As the doctor continued talking, Leah sat beside me googling every word on her smartphone. By the time I got off the phone she probably knew more than me. However her peace and serenity and trust in God’s will for her life never seemed to waver.

Leah and I taught Children’s Church together on Sunday 21st April 2013, with the help of some of the other young people from our church. We taught the children the following Bible verse:

What is our true hope? It is the hope of sins forgiven and life everlasting.

We hope for other things too – like strength for the journey:

Here’s the most recent song that I play on repeat and derive comfort from:

“I Am Not Alone”
By Kari Jobe

When I walk through deep waters
I know that You will be with me
When I’m standing in the fire
I will not be overcome
Through the valley of the shadow
I will not fear

I am not alone
I am not alone
You will go before me
You will never leave me

In the midst of deep sorrow
I see Your light is breaking through
The dark of night will not overtake me
I am pressing into You
Lord, You fight my every battle
And I will not fear

You amaze me
Redeem me
You call me as Your own

You’re my strength
You’re my defender
You’re my refuge in the storm
Through these trials
You’ve always been faithful
You bring healing to my soul

“I know the journey is too great for you”

I don’t really have a plan to write on this “Journey” page on a regular basis, but some days the words just bubble up inside of me & overflow onto my iPad.

When Leah was battling with her illness I chose my words so carefully both for her sake & for the sake of our loved ones reading my posts, as I never wanted to take away hope or cause unnecessary anxiety.

Now there are days when I feel compelled to fill in the gaps & tell the story behind the story.

Some of you leave beautiful comments, saying that my posts are helpful.

I would love to think that the things that I share here could somehow be an encouragement to others in the trials of life.

Hopefully if what I have to say here is not helpful to someone then those people will vote with their feet (or fingers) & just not visit this page.

When Leah was first diagnosed she was given a gift of Rainbows for Rainy Days by its author Catherine Campbell who has buried two of her three children.

This book contains 40 devotional readings which we used in Bristol and then put on our bookshelf.

When Leah was admitted to ICU we decided to start using the book again.

On the 6th January Leah was critically ill and I was reading out loud to her from this book before the doctor came to give her a general anesthetic followed by a bronchoscopy and a lavage.

Our scheduled reading for that day was Day 5 based on 1 kings 19.

I was normally very good at controlling my emotions in front of Leah but my voice quivered with emotion as I read Leah the following

“God utters some of the tenderest words in Scripture to this broken servant – I know the journey is too great for you.”

The words seemed so relevant to Leah’s situation that I was overcome – concerned that these words might somehow have a deeper almost prophetic significance.

Leah was too weak to open her eyes but she heard the emotion in my voice and reached out her two arms and gave me a hug.

Yes, the journey was too great.

Leah said at the time of her diagnosis that God had a plan for her life and I believe that God’s plan for Leah’s beautiful life was fulfilled in the 16yrs and 16 days that she spent on this earth.

Although the emotional pain of losing Leah is worse than any physical pain I have ever experienced I wouldn’t bring her back because I know that she’s in a better place where her body is no longer broken.

Click here to visit Catherine Campbell’s website

Never Once Have We Ever Walked Alone

Our night was punctuated by dropping oxygen levels, Drs visits, nebulisers & retching.

Leah’s going on a ventilator around 12 or 1pm today and the biggest risk to her life will be during the process of installing the ventilator equipment in her body.

Once it’s up and running everything should be ok.

When Leah was 3 years old she came home from Good News Club and said that she had asked Jesus to forgive her sins & live in her heart as Lord & Saviour.

Since then Leah has sought to love and serve God with all her heart.

In April ’13 when Leah was diagnosed she said two things “God has a plan for my life” & “Mummy, we have to see the bigger picture”.

After the Dr had called me out of the room last Saturday to give me his “your daughter might not survive talk” Leah typed on her iPad “What did the Dr say” I answered her truthfully & in simple terms. She nodded her head & shed a single tear but showed no fear then or since.

Leah knows the truth of the Bible verse “To live is Christ, to die is gain.”

Of course Leah wants to live and I want – more than words can express – for my child to live, but it’s also hard to see your child suffer so very much.

I know that 100s maybe 1000s are praying for her healing and this is what I want, but I have to trust her in the hands of the one she loves & Who died on the cross for her & for us all.

“Never once have we ever walked alone”