The word of 2013 is Drive. :)
Not just the awesome project we started this year with our dear friend, Jeremy Brown, where Steve, does paintings with his wheel chair, but with Steve's drive to continue to fight this awful disease, as well to continue his mission to spread awareness & love.
May started the complications where Steve would spend months in & out of the hospital. He would go in an out up until October. Spend a month in the hospital, to a few weeks-a month at home, to a few more weeks-a month back in the hospital, etc. Every time we went into the hospital we got the "not sure what's going to happen" talk in the beginning to eventually faith being restored and us going home each time. Steve's drive to continue to battle this disease has been an inspiration to thousands near and far. Steve has a plan in mind about how his life will end & often says, "It's not time yet." It's amazing that he is so set on fighting to stay alive to continue to spread his message. :) I always get a little superstitious to say that we are stable because I want us to stay home, but I will say that Steve is the most resilient person I know & is doing well currently. Thank God!
Steve having something productive to fill his time (our documentary, helping me write my book, & his drive paintings) have kept him so driven to keep living.
There are a few other words for 2013: unexpected, movement, love, & alive.
Before Steve's hospitalizations we were traveling like we like too and even attempted to do so in between some. It took Steve getting very sick out of town and me driving through the night to get him back to our hospital to realize that our adventures would need to be more local. Although, Steve, was very sick for so much of the year he spent so much time on focusing on LIVING because he's still ALIVE. :) Every time he had energy we were out doing something. Steve's movement is very limited and getting out of bed has become very difficult for him this year, yet he still pushes himself to get up at least a couple times a week.
We've had a lot of unexpected & fun moments as well. One of those would be with Michael Franti & Spearhead & Sara. :) Since meeting them at Wanee in April, where they made our year by introducing us on the stage, we've grown to be good friends with them. They came to visit Steve in the hospital in August when we were unable to make it to see them in Nashville, we were blessed enough to make it to their show in October where Michael brought us out on stage & shared our story again here in Atlanta, & then in December Michael came to spend the day with us while we filmed with him and super talented John Roderick for a special piece. Their love & support has meant the world to us & each person they brought into our lives have made it better. The unexpected reach out from Dave Matthews Band this year also was a special moment. They invited us to a show to meet them and when we were unable to make it due to Steve being in the hospital Dave himself drew us a special piece. It warmed our hearts & still does each time we look at it.
We've continued our movement and thanks to some of these more well known voices we've successfully been able to get our word out in several areas. We've appeared on the news several times this year, several newspaper articles, few magazines, & even some of my favorite websites. Each time I see someone share our story I know it's getting awareness to ALS & living life to the fullest out to the world. We just launched our kickstarter for our documentary which is our big push for our movement. We've been working with a great team on this for over 2 years & the kickstarter is to finally fund the projects completion. If you want to donate or share the story, click here! :)
A big reason Steve & I have continued our fight/movement and have been able to remain positive is because of the abundance of love y'all have surrounded us with. It's a blessing to know that you all are there for us when we need you & that you are thinking of us on bad days, that you are sending good thoughts, that you are praying for us, & that you all wish and hope the best for us. The kind messages that fill our inbox are overwhelming in a great way. It's been an amazing thing to see our following increase so much this year. Also, for all of those who put together fund raisers for us: golf tournaments, concerts, sales, brewery tours, etc.----the financial support is most appreciated & has helped us be able to stay on top of medical bills & continue to live a life of memories. From the bottom of my heart thank you all for the unconditional love & support that you continue to show us.
I know I don't always blog but if you want to follow us more please like us on Facebook here.
Also, on instagram & twitter @hopieannc
Here are a few of the highlights of the year:
photos of the year
Drive art show video
Michael Franti I'm Alive fan video--watch the the end.
Wanee April 2014 on Stage with Michael Franti
Pittsburgh News May 2013
Article for mindbodygreen
Another pittsburgh news story
Pittsburgh news helping us turn a negative into a positive
story in canadian magazine
A shout out in USA today!
Fox 5 news interview
Daily Courier story
Mt. Pleasant Journal