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A different picture

Carla Lindsey on life with her son Jayden, who was born with cerebral palsy.
Carla Lindsey and family
Posted May 1, 2012

A wise theologian once said, ‘Life is like a box of chocolates. You never know what you’re going to get.’

I know the saying is cheesy, but it’s definitely true. In this life you just never know exactly what you’re going to get.

You can have a picture in your mind of how things will pan out—that you’ll do this and you’ll move on to that.

But then life just happens and the picture you had is ripped to shreds. You suddenly find yourself on a completely different path, one that you could never have seen coming.
That’s exactly how it was for my husband, Bevan, and I when our first child, Jayden, was born. We had no idea what we were getting! But I guess it’s like that for all first-time parents. Everyone tells you parenthood will change your life, but you don’t quite appreciate how true that is until it happens. Parenthood certainly changed our lives—in more ways than we had bargained for!

Jayden was born by planned caesarean section just after 10 am on 1 May 1997. He weighed in at 7 pounds 9 ounces. Everything had gone well. When we left the hospital, we thought we were taking home a healthy baby boy. Being first-time parents, we didn’t know what ‘normal’ was, but by the time Jayden was a few months old, Bevan and I had a feeling something was not right. He wasn’t reaching for things or weight bearing or trying to roll over.

We consulted doctors and were told not to worry. After all, babies progress at different speeds. But as Jayden’s first birthday approached, we knew that something was seriously wrong.

After what seemed like an eternity of hoping and praying and pushing people for answers, our worst fears were confirmed: Jayden had cerebral palsy. That means brain damage. The bits in his brain that send the messages to the body to tell it how to move, just didn’t work properly. No one could tell us why this had happened, and no one could tell us what the outcome would be.

Cerebral palsy is a wide-ranging condition and can affect people very differently. We had no idea of what things were going to look like for Jayden. But this was not the picture in my mind of what my ‘nice little family with all my nice little children’ would look like. My picture didn’t include a disabled child.

Feelings and challenges

Our lives were suddenly forced onto a path we would never have chosen to take. On this journey there have been many emotions and issues to deal with.

Firstly there was grief. I had to deal with the loss of my picture —hopes and dreams for my son that would probably never be realised. I used to dread going to other children’s birthday parties, as they emphasised to me what ‘normal’ children did at a particular age. They just rubbed in all Jayden didn’t do.

It seems that at every age and stage there’s a new bit of loss that I don’t see coming. Like when kids Jayden’s age are playing a sport that he can never play, or when he wants to go to town by himself like other teenagers. The difference between what Jayden can do and what other boys his age do seems to grow wider.

There’s been so much frustration. Frustration at the lack of funding to supply children like Jayden with adequate teacher aide hours. Frustration at the length of time and the ordeals involved in getting a new piece of equipment. Frustration at the amount of time I spend chasing things up to make sure that Jayden gets what he needs. Frustration because sometimes I cannot work out what it is that Jayden is trying to tell me.

There have been difficult decisions, such as what type of therapy path we should go down and which school is going to be the best. These decisions have meant trying to predict what Jayden will need years into the future, which is so hard.

There was fear. Initially we wondered, if we have another child will this happen again? How would I ever survive if it did? Now we wonder what the future holds for Jayden, and what will happen to him when Bevan and I are no longer here.

Surprising riches

While we have been through many challenging times, Jayden has also brought so many positive experiences into our lives. We are definitely richer because of Jayden!

I need to explain that Jayden is a slightly ‘evil’ child—and I mean that in the nicest possible way. He has such a wicked sense of humour! The computer has opened up the world to Jayden and he’s often caught using it for devious purposes. He delights in changing his sister’s password and switching all of the icons on the screen to pictures of icons on the screen so she can’t get into her computer.

A few years ago Jayden was caught ‘collecting’ money after church. His speech is quite hard to understand, but somehow Jayden had managed to convey to a number of people that they should give him their money. To this day I have no idea why people did actually give him their money, but by the time I realised what he was up to he’d made $36.

I asked Jayden what this money was for, and he informed me it was because he was getting Sky TV put on. (Yes, it’s practically like living in the dark ages at our house with no Sky!) Since no one wanted their money back, he was made to donate it to a more worthy cause.

Jayden has a great sense of humour and has brought so much laughter into our house. He is always hatching schemes, like some other way to get Sky TV on, or planning a disco. He takes great delight in recording people speaking, then using his computer to manipulate their voices to make them sound ridiculous.

We have had some real moments of pride with Jayden—when he has managed to do something that we never thought he would. Seeing Jayden achieve something, even something really simple, means so much, because it is much harder for him to do things that most of us take for granted.

Jayden is a very friendly boy. He loves people and people love him. He has no problem talking to complete strangers in the supermarket and inviting them home for afternoon tea, offering to babysit their children, or telling them why they don’t need the alcohol he can see in their shopping trollies. (There are times when I’m glad people can’t always understand what Jayden is saying!)

Blessed by others

While I know that God’s presence is with me constantly through his Spirit, I also often know God’s presence through the many beautiful people God has put in our lives.

I will never forget during the week following Jayden’s diagnosis when a friend rang me to say, ‘I’ll meet you in the car park at church so that you don’t have to walk in by yourself and face any questions. We’ll go in together.’ It was such a simple gesture, yet so meaningful.

From two to five years of age, Jayden did special exercises three or four times a day, six days a week. Every time we did these exercises, we needed three people. That meant we had 50 volunteers come to our house every week to work with Jayden. Our lives have been enriched by the people we have got to know because of him—from his bus drivers, therapists, teacher aids, riding for the disabled staff, to the parents of other disabled children that Jayden is friends with. God often carries us through the people he has placed around us.

An imperfect world

But the questions don’t go away. The big one is ‘Why?’ I took my folic acid when I was pregnant. I didn’t eat cold meat, let alone seafood during the pregnancy! I did everything ‘right’, so how could this have happened?

I don’t have a completely satisfactory answer. The best answer that I can come up with is simply the fact that we live in a fallen (or a sinful) world. When God made this world it was very good, but people’s disregard for their creator means the world is not what God intended it to be. While this doesn’t explain specifically why Jayden’s condition should have happened in our family, it does at least help explain why bad things happen.

The world we live in is not a perfect place. But right now this world is home, and one day God will put it all back together. One of my favourite Bible verse is The Message paraphrase of Colossians 1:20, which says that ‘all the broken and dislocated pieces of the universe —people and things, animals and atoms—get properly fixed and fit together in vibrant harmonies, all because of his [Jesus’] death’. God will one day put it all back together. But for the moment, we are living in a world where bad stuff happens that we don’t have good answers to—where the world is far from perfect. This is just reality.

A few years ago, God gave me a new picture. We were at a church picnic at a park, and the kids were playing on the swings and slides. Bevan had just taken Jayden out of his electric wheelchair and was carrying him on a swing. I found myself standing there staring at Jayden’s empty wheelchair.

I remember thinking, ‘One day this wheelchair is going to be permanently empty’. My mind went forward and I pictured the door outside of Heaven. I imagined rows of wheelchairs and piles of walking sticks and hearing aids. Masses of things left outside of Heaven as they were no longer needed. As I was standing there looking at my son’s empty wheelchair, getting all teary eyed, I felt like God asked me the question, ‘So where is Jayden now?’ I immediately responded, ‘His father is carrying him.’

As I looked at the empty chair, I understood that we’re all disabled. A disability is something that makes us less able, limits us and stops us short of reaching our full potential. That is what sin does. It disables us, it holds us back; it stops us reaching the full potential for which we were created. It makes life harder than what it was meant to be. But we are clever people and we construct our electric wheelchairs and all kinds of clever equipment to get around our sin problem. We try to pretend we’re not disabled. But those chairs, as clever as they are, are a poor comparison to the ultimate freedom that we can have in Christ.

There’s a time coming when wheelchairs will get left at the door, when Christ will put everything back together, and when all our questions will be answered. But until then, we have a Heavenly Father who knows what we’re going through, who dearly loves us and whom we can completely trust. And God says to us, ‘My children, I have big strong arms. Please, let me carry you’.

By Carla Lindsey (abridged from War Cry, 5 May 2012, p5-7)