A Little Child Shall Lead Them: Guest Post

An incredible testimony from a guest and friend:

 

“Heather was born on the 7th January,1992. She was our first child. A text book pregnancy; uneventful delivery. 6lbs 9oz of perfection. Not that we were biased  of course.

She was a happy baby, always smiling and laughing.

No signs that anything was amiss.

 

At 10 months old that all changed. She had 3 febrile fits and ended up in hospital for 5 days. During this time she cried and screamed inconsolably.

“What’s wrong?” we asked the doctor.

“I don’t know ,”came the reply…”brain…meningitis?”

It wasn’t meningitis.We didn’t find out what was wrong until the day before her 2nd birthday.

For the intervening months we saw endless professionals. And the daughter that went into hospital that day, came out changed.

She was still smiley…but her whole body tone had become more floppy and she had screaming episodes every day;sometimes for hours on end. We had no idea what was going on.She seemed terrified and lost.

 

Skills she once had, left her.She could no longer sit unsupported/nor hold a spoon/nor feed herself. She stopped rolling over and she lost the speech she had previously acquired; “Mum” and “no”.

We were told she had Rett Syndrome; a neurological disorder effecting mainly girls.

“Imagine the symptoms of Autism, Cerebral Palsy, Parkinson’s, Epilepsy and Anxiety disorders all rolled into one little girl.”

There is more information here:

http://www.rettuk.org/what-is-rett-syndrome/symptoms/

 

Her life became a seemingly endless round of hospital visits and therapies.

She needed help for every aspect of her daily living, including personal care.

The home became a mini hospital over time.

She endured a lot.Far more than I think I could have handled, had it been me.

Scoliosis and then spinal surgery. Fractures due to osteoporosis.

A gastrostomy, when her swallow became unsafe and tube feeding was the only solution.

In time, a dependency on oxygen and daily chest physiotherapy and suctioning to keep her airways clear.

Epilepsy.

Repeated hospital admissions for pneumonias ; including 23 stays in intensive care on life support.

 

Yet through it all, she radiated peace  and a serenity that humbled us and delighted us in equal measure.

When she laughed you could hear the joy of life in it. People who met her , never forgot her and she touched peoples’ lives, even from one meeting. There was a spirit about her; a strong sense of purpose in her life.

 

She loved God and Jesus.

– through assemblies at school and sporadic attendance at our local church.

That drive that sometimes comes when we have kids…the need to take them to church.

Perhaps a realization that children aren’t just DNA and cells..but a miracle.

And something stirs in us, even if only for a while,that we should touch base with something bigger than ourselves.

 

My husband was a very lapsed Catholic and I was a satanist. He was relaxed about God and I hated God.

But our daughter loved Him.

In time we had 2 sons and another daughter. In having Heather and our other kids,  I realised that whatever my beliefs, I  didn’t want them following in my footsteps.

I learned (from carers who looked after Heather), that she was worried for us; for me in my satanism and for us all, not knowing or wanting Jesus, (she had learnt to communicate by looking at words and pictures.)

 

She died on 15th July 2008. My husband and I were by her side. It was very peaceful.

And I knew that as she breathed her last exhale here; she was taking her next inhale, face to face with her Saviour.

A Saviour I had hated all my life.

 

In time we returned to church, perhaps as a form of comfort for her siblings. I was still angry and bitter, but a realisation began to dawn. Being on the path I was on, meant that I would not see my daughter again. I was certain of that. Neither would my husband.

In time God, in His mercy, softened our hearts and opened our eyes.

My husband became a Christian first…I followed a few months later.

A year later, both our sons made professions of faith. Our youngest is 8 and she enjoys learning about Jesus.

My mother has Alzheimers and in her child-like state, I was able to help bring her back to faith; my dad became a believer 1 month before he died, aged 80.

 

Through Heather, a child that had no voice; God saved her family.

I was looking through the bible and came across this –

 

“The word of the Lord came to me, saying,

⁵ “Before I formed you in the womb I knew you,

    before you were born I set you apart;

    I appointed you as a prophet to the nations.”

⁶ “Alas, Sovereign Lord,” I said, “I do not know how to speak; I am too young.”

⁷ But the Lord said to me, “Do not say, ‘I am too young.’ You must go to everyone I send you to and say whatever I command you. ⁸ Do not be afraid of them, for I am with you and will rescue you,” declares the Lord.

⁹ Then the Lord reached out his hand and touched my mouth and said to me, “I have put my words in your mouth”.

( Jeremiah 1 v 5-9)

 

With a winning smile,a cheerful heart and a love for her Saviour, Heather preached to the nation that was her family.

And in turn, we are reaching out to our friends and neighbours and all the world, with the same Good News that brought her home.”