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 than 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: http://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
COMMENTS FROM ORIGINAL POST:
Christine 21/4/2017 05:58:30 pm
Beautiful and powerful Bec. And I loved the video. He will sustain you xo