I wrote my first blog post about a month ago. I wrote this blog for a few reasons. For my family; particularly my husband, parents, sisters, and brother in-law. It was also a chance for me to share this news with the others in my life, to allow my friends to find out what was happening without having to have the same conversation over and over again. It gave me a chance to encourage my family and remind them that it is going to be ok. The blog enabled my family to open up and talk with each about our true feelings. We were able to admit the hurt that we were hiding behind our smiles, support each other and remind each other about the promises of our God.
Beginning the blog for my family I did not expect many visits to the site, but I have had many more views than I expected, as of last week I had reached over a thousand views. Since posting the blog lots of people have approached me. I have had many people thank me for encouraging them in their faith, I have had people tell me how sorry they are to hear my news and have offered their support, I have also had people I am ‘close’ to decide not to acknowledge my news.
The question I have been asked most is “what are you gonna do now?”, which is typically followed by the question “do you plan to travel more?”. I struggle with this question, the truth is that my life expectancy is not set, neither is theirs, something could happen to me or the people asking me next week. Do any of us live our life to the fullest on the off chance we will die in a freak accident? Are you traveling this week just in case you have an accident next week and cannot walk? Why am I expected to ‘want’ more from life now then when I did before I was given this news?
The truth is I just want to be ‘normal’. I want to spend my time with family, I want to have a family of my own, and I want to continue to do what I am passionate about. I want to spend my time volunteering for my community, nursing, and worshipping my God; just as I do. Yes, I want to travel every now and then. But more importantly I want to be a part of my family’s lives and friends lives. I want to create memories with them and be a positive influence on them.
A bunch of friends and I are hiking up the ten highest mountains in Australia in March 2018, to raise awareness for MJD and people with disabilities. We're planning on fundraising throughout the year to raise money for research and support programs.
More info: www.tensummitschallenge.com
It's not just about creating awareness for MJD for me, it's about empowering people who have been misjudged and mislabeled, and supporting those who care for other people. It's about helping people understand that a disability does not define who someone is, it does not make them any less of a person.
The scientific outlook for my life isn't too amazing, if you do some research into it you will understand. I believe in a God who heals, I don't understand why he has let this happen but I'm not going to sit back and take it; I'm going to STAND AND SCREAM. Scream about hope, scream for those who are hurting, scream that the fear of what may come will not control me.
Picture from: http://www.itownchurch.com/wp-content/uploads/2016/06/FearOrFaith.png
Roughly four weeks ago I found out that I inherited a degenerative gene in my family called Spinocerebellar ataxia type 3 (SCA 3), also known as Machado-Joseph disease (MJD). Basically it is a progressive decline in muscle control; losing coordination, balance, speech, swallowing, eventually requiring wheelchair assistance and the support of someone to help you with everything. There is no cure for this disease.
The scientific outlook for my life isn’t all too amazing. I live a reasonably active lifestyle; I’m a nurse in a busy emergency department, a volunteer firefighter with the CFA, I play the guitar, I enjoy hiking, riding, swimming, I’ll give anything that’s outdoorsy a go. To think that one day I may not be able to do any of these things upsets me greatly, that one day I may struggle to even walk in a straight line. My Mum has SCA 3, as well as two of her siblings and so did their Mum. I’ve watched and helped my Mum progress through the disease.
When I received this news I was shocked and devastated. I have many dreams that I could now almost deem as unreachable. Why would God let this happen to me? Why didn’t he answer the prayers of my parents? Haven’t I already been through enough?
So to receive these results came with great disappointment and heartache, well it wasn’t my results that first caught me out. Last year, my younger sister had genetic testing done to see if she carried the gene and when her results came back as positive I was quite upset. I had always held onto my faith that neither I nor my sisters would have the gene. My parents prayed over us from a young age, I’m pretty sure they prayed for us while we were growing in the womb. They prayed and believed that this gene would not be passed on; I had prayed and I had also had people pray for me that I would not have this gene. If God is good then why has he let this happen, why has he not healed me?
I don’t believe in a god who is distant, sitting up in heaven, ruling down saying do good or you’ll get what’s coming to you. I believe in a God who loves, who heals, who cares for me, who would never want to harm me. And I have come to these conclusions...
Why does God let bad things happen?
Why didn’t God create a world free of suffering, tragedy, evil and death? But that’s exactly what God created! God created a world that was free of suffering, tragedy, evil and death; you can read about it in Genesis 1. God saw all that he had made, and it was very good (1). God wanted us to experience love and love always require a choice so God gave us free will. With that free will humans rejected God and that caused the introduction of evil into the world (2). God is not the creator of evil and suffering.
Why doesn’t God heal me?
I’ve heard of people being told they haven’t been healed because they don’t have enough faith or they have some hurt or sin that they need to deal with. But healing isn’t always the path God has planned. Sometimes God allows suffering as it can teach us things that we would never get out of a book or seminar. He uses it to strengthen and change us. Your pain has a purpose. God doesn’t say you might have struggles, he says “on earth you will have many trials and sorrows” but he also says to take heart as He has overcome the world (3). The bible is full of stories about trials but in those trials is God’s grace and mercy. He tell us not to be afraid or discouraged because he goes before us, is always with us and will never leave us (4). God causes everything to work together for the good of those who love him (5) and we cannot begin to imagine what he has prepared for them (6).
Struggles are part of this life but God gives me hope for an eternity free of suffering and pain. I know that there are going to be hard times a head, even now, most days I’m ok but some days the reality that my time to do things may be short makes me upset. One day I may not be able to play the guitar or even walk in a straight line. All the things that I find happiness in now, one day I may not be able to do any of them. But I do know that God has a bigger plan.
Heaven is my retirement plan!
But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefor do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own (Matthew 6:33-34 NIV).
(1) God saw all that he had made, and it was very good (Genesis 1:31 NIV).
(2) ...’You must not eat fruit from the tree that is in the middle of the garden, and you must not touch it, or you will die’. “You will not certainly die,” the serpent said to the women. “For God knows that when you eat of it your eyes will be opened, and you will be like God, knowing good and evil.” ...she took some and ate it. She also gave some to her husband... (Genesis 3:1-7 NIV)
(3) “on earth you will have many trails and sorrows. But take heart, because I have overcome the world.” (John 16:33 NLT).
(4) The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged (Deuteronony 31:8 NIV).
(5) And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them (Romans 8:28 NLT)
(6) No eye has seen, no ear has heard, and no mind has imagined what God has prepared for those who love him (1 Corinthians 2:9 NLT)