My name is Gill Truman. I live in Bowral, I’m married to Matt and we have two boys – Charlie is 13 and Art is 11. 

I have a jazzy computer that talks for me. Why? Because I have motor neurone disease. It is a progressive, terminal neurological disease with no known treatment or cure. The average life expectancy is 27 months. Slowly, as my muscles die, I will be unable to walk, talk, eat and eventually breathe.

Being told this can be a bit confronting when you're only 30 years old and a mother of a newborn and an almost two-year-old. But what I find fascinating is looking back on that train wreck moment and seeing God’s hand at work. Some people may call it shock, but I call it God.
In that moment when your body goes numb and the world slows down, I was asked by the doctor if I had any questions. I calmly said, “I'm an occupational therapist and I work in neurology. I had a feeling you were going to tell me this. I have no questions. I am a Christian and have a hope in heaven. But I need to go and sort my family out”. I mean, who says that?
We got up, thanked the doctor and multiple nurses who were in the room waiting for me or my husband Matt to pass out, and left. Once in the car park I turned to Matt and said, “You'll believe by the time I die”. Matt’s still not a believer, although very supportive of my faith. I sometimes think that must be why I’m still here, 11 years after that car park moment.
There are so many verses in the Bible that say God is with us. This was one of many moments when I’ve seen the loving character of God: 

fear not, for I am with you;
    be not dismayed, for I am your God;
I will strengthen you, I will help you,
    I will uphold you with my righteous right hand. (Isaiah 41:10)

Over the following months I was truly grateful for prayer from around the world. I can’t explain how I coped without saying it was through God’s strength. When I was diagnosed Matt and I were living in England with the boys and had no intention of moving back to Australia. However, a year after my diagnosis we moved back to Australia to be closer to my family. That was 2013. Art was one, and Charlie three.

Over the past decade my body has been slowly fading. I now receive help to run the house and get dressed. I use my groovy wheelchair for all mobility outside my home and this computer is driven by my eyes. It can open the front door, type for me, surf the internet, make phone calls and, as you can see, talk for me. I also have Mum literally over the road, and without her support my care hours would skyrocket.

It’s a funny thing losing your independence. I’m sure many of you can relate. There is heartache and grieving. But my weakness and vulnerabilities have opened so many doors to talk to people about my faith in Christ and the strength that comes from him. It blows me away. 1 Peter 3:15 says, “But in your hearts revere Christ as Lord. Always be prepared to give an answer to everyone who asks you to give the reason for the hope that you have”.

I am fully aware that God didn't give me motor neurone disease. It is, sadly, part of our fallen world. But I often think there are benefits. I’m always ready with an answer, because every day is a challenge and how do I get through it? With Christ as my fortress and my strength.
I’m also a better mother. I can’t really scream at my children. And I have an urgency in me for them to know Christ, and a desire for them to have my world view, based on the firm foundation of Christian values.

Bringing up children in a world full of screens, instant gratification and the culture of “me first” is a real challenge. Having solid foundations and the thought, “Will I be around when they’re at their most vulnerable in their teenage years?” has definitely spurred me on and helped me to say “No” from when they were young.
Being a Mum is hard, especially when you're not saying “Yes” like other mums. And, wow, do I get it wrong at times. But, knowing that the Bible is so clear on discipline as an expression of love I have been encouraged to keep going.
Looking back, another benefit of motor neurone disease is that I’m a better communicator. Some of you may laugh because if you have a hearing impairment you won’t be able to understand my normal voice. But my fading voice has meant that I don’t interrupt others – well, let’s face it, I can’t interrupt others. I’ve also become a much better listener as every word is an effort. So, I’m happy to just listen.
Don’t worry, though. I’m not serene and calm and always seeing the positive. As I study the Bible more, I marvel at the variety of prayers spoken by God’s people. Some are incredibly personal, asking to conceive a child, but also their prayers were often so practical. Sometimes they seemed to gently whisper to a loving God. Other times they yelled at him in agony and frustration. And that’s me sometimes. And that’s okay. God wants us to share our innermost being with him.
When I look back at my life, it’s amazing to see God’s hand at work and how he prepares us for our journey ahead to honour him.
There are a few things I’ve learned along my MND journey.

The frustration of not being able to do things is what often reduces you to tears. However, before I took medical redundancy, I was an occupational therapist. Not only that, I worked in neurology teaching clients compensation strategies, amongst other things.
I often think I’d make a great occupational therapist now. I often thank God for those years of training and work. Little did I know I’d be treating myself and being a witness to many, being able to control my frustrations.

The other thing I’ve learned is that acceptance leads to independence. Many people with MND die so quickly after their diagnosis they don’t have time to process the enormity of it, as their disease progresses so rapidly. For no reason, apart from answer to prayer, my progression has been slow. This has meant that I’ve had time to prepare myself and family for the introduction of equipment, such as my eye-gaze computer and wheelchair.
These pieces of equipment can be hugely confronting and scary to many people with MND. As it indicates that the disease is progressing. However, by God’s grace I’ve been able to make these transitions slowly over time.

My children love all my gear. Art, the youngest, delights in giving his friends a tour of our magical house. The magic door, the magic bed, car, toilet, computer and wheelchair. My longevity has also allowed me to raise money for MND research and give talks like this – not only sharing my faith but raising awareness about MND.

As there are no survivors of MND, and most people are just trying to fight a fire of disease progression. I look back and think about how my God-given gift of public speaking and my personality of being a planner has prepared me for this.

The final thing I wanted to share with you is the topic of healing. Many people say they’re praying for me to be healed. Which is marvellous... however, the longer I travel this road the more I realise that the Bible isn't always talking about physical healing, but a spiritual one. I look at how I cope and realise that my spiritual growth has exploded and my reliance on God has become a foundation stone for each day.

Before I was diagnosed with motor neurone disease I would have said, “Yes, I rely on God”. But when the rug is fully taken from under you, and there's no hope of medical cures, that's when I realised, “Oh no, now I rely on God”.

So many people put their hope in a cure for MND – and of course I pray for this and have raised over a million dollars for motor neurone disease research with the help of my friends. However, having the sure hope of heaven is a much better option, for none of us will be fully healed until Christ returns or we're called home.

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal (2 Corinthians 4:16-18).

This is edited from a talk given via computer voice at a recent meeting of Mothers’ Union in Bowral.