A Long Walk In The Garden: Living With Rett Syndrome

By Cindy Fourie

I can’t say exactly when I felt the change, but the doctors say it definitely was between 18 months and two years of age. Mom used to give me chips in a bowl and my favourite trick was to tip the bowl over and eat the chips off the carpet. Looking back, how unhygienic! On one particular occasion, Mom gave me my bowl of chips and I was planning to do the same when all of a sudden my hands didn’t want to respond to my thought pattern. I thought, “Maybe I am not concentrating.” So I put my mind to it and tried again. Nothing. What is wrong? I could see on Mom’s face that she thought I was just being naughty. It could be that I was just having a bad day. Tomorrow would be better. Tomorrow was not better; in fact, it was worse.
Excerpt from book
“As parents of a Rett Syndrome daughter, we have learnt the truth of the scripture found in Romans 8vs28. God is able and does bring good out of any situation as long as we keep our focus on the Lord Jesus Christ. God does not always remove difficult situations, but rather enables us to go through them.”
Robert and Cindy Fourie
“This is a wonderful story with humour and love in all the sadness.”
Susan van Tonder (Editor)

• Language: English
• Publisher: Cindy Fourie
• Release date: Nov 3, 2016
• ISBN: 9780620723749

Book preview

Cindy Fourie

My story is dedicated to the faithfulness of the one and only Triune God: Father, Son and Holy Spirit. He does not always remove the difficulties, but He is always with us in the good times and in the bad times and most especially in those darkest of valleys of life.

His love enfolds and carries us through. He is the faithful God.

Foreword

I once heard it said in a television programme that life deals us all a hand of cards…it is how we play those cards that makes the difference.

A friend of Cindy’s, Carol, who sadly is no longer with us, once said to her that being a parent of a disabled child is like setting off on a holiday and arriving at an unplanned destination. You still have a holiday, just not the one you planned.

When Mikayla Rachel Fourie was born on the 22nd of December 1995, Cindy and I had the basics of her life journey planned. We knew which pre-school, primary and then high school we planned to send her to.

None of that came to fruition. The journey we have travelled has been totally different to that which we had envisaged. In this journey, we have met people we probably never would have met had Mikayla not had a syndrome. We have been enriched and hope that in turn we have had a positive impact on those we have met.

In our life’s journey so far, we have learnt at least two things about our Triune God: Father, Son and Holy Spirit. He is faithful and no matter what the situation, He is able to bring good out from it, as long as we trust Him.

From birth, Cindy has always been Mikayla’s voice. Cindy and Mikayla have regular conversations and by the way Mikayla looks into Cindy’s face and smiles, I’m sure she understands.

It is appropriate that Cindy tells Mikayla’s story through Mikayla’s point of view.

I trust that reading this story will give you encouragement, upliftment and hope. Writing this story has given Cindy much pleasure and enjoyment. Through these pages Mikayla speaks and shares about how it is to live with Rett Syndrome and how it has impacted us as a family. We hope that the Lord Jesus is glorified in this story because without His strength in us, we would not be able to cope.

Robert Fourie

Husband and Dad (2016)

Contents

Cindy Fourie

Foreword

The Beginning

My First Days At Home

My First Birthday Done and Dusted

Why Won’t My Hands Work Anymore?

Is There a Doctor in the House?

God Will Never Leave You nor Forsake You

Where to From Here?

The New Millennium With New Challenges

My Richards Bay Adventures

Enter Pixie Khumalo

Shouldn’t We Be on Oprah?

My Garden - My Heavenly Peace in the Good And Not-So-Good Times

The Finale

Chapter 1

The Beginning

Where do I begin…. Without sounding predictable, the best place to begin is at the beginning.

I am not sure if it is medically proven, but I doubt that babies remember their time in their mother’s womb or their delivery.

Seeing as my story is not the usual one, I am going to take you through my arrival into this world.

I know I was very content in my mother’s womb. I was warm, comfortable and extremely well fed. It was like having free board and lodging…womb service!!

I could have stayed there indefinitely, but nature intervened and I could feel that my time had arrived. I was trying to stay as long as possible (I was eight days late as it was).

Then, the inevitable happened and I found myself being pushed out. The process didn’t seem stressful and I didn’t find myself feeling stressed or worried. The only scary part was a pair of silver, what I thought were, clamps being placed on my head and the doctor pulling me out. Later I learned that these were called Wrigley’s forceps.

I was placed on my mom’s tummy and that was when I first saw her. My dad was standing next to my mom and they both looked happy to see me.

I was whisked off and weighed, my head measured and then I had a lovely bath. From those first few minutes, I discovered that I loved bathing. The nurse asked if my parents had decided on a name for me. Mom was quick to say, Mikayla Rachel Fourie. I think she was really hoping for a girl.

In the nursery I was welcomed by two other girls. They were very welcoming, but I could see that one of the little girls looked a little heart sore. I soon discovered that her mom was not well at all and had experienced complications during labour. Her mom was taken away to theatre and she did not even have a chance to spend time with her little girl. It was then that I was so thankful that my arrival had gone well and that my mom was able to be with me.

I could feel the hunger pains kicking in. I was so used to being fed through my umbilical cord that I was not sure where my next meal was going to come from. It was at this time that a nurse took me to my mom. I heard them talking and the next minute I had this lovely aroma of sweet milk. My taste buds got so excited and I found myself being propelled towards my mom’s breast and sucking onto her nipple. What a lovely taste. The milk was so warm, sweet and filling. Some years later, I learned that it was thanks to Aunty Toots (her nickname) that my mom could breastfeed. My mom had inverted nipples and Aunty Toots had organised nipple caps for my mom to wear a few months before my arrival. Even then Aunty Toots was looking out for me.

There was something called visiting hours and that was when family and friends could visit the moms and their babies. I remember the nurse holding me up and a group of people, who I soon discovered were my family, could see me through the nursery’s glass window. That was the first time I saw Aunty Toots and my three cousins, Peeo, Midge and Lexy (their nicknames).

Lexy looked quite young and I could ascertain that he was not much older than I was. Little did I know that he was to be the one that every family has!

My stay in hospital wasn’t a long one, but it was good. On Christmas Eve my dad and mom could take me home. I was sad to say goodbye to my friends. We had been joined by another girl. I wished Kathleen all the best and said I really hoped her mom would be okay. Years later, I had feedback about Kathleen’s mom. I will tell you this story in Chapter 11.

Chapter 2

My First Days At Home

I was carried to the car by a nurse and placed safely in my mom’s arms. Our car at that time was a little red mini. My dad drove so carefully. The journey didn’t seem too long and before I knew it we were home. As the car