Saturday, January 25, 2014

Love. only love.

After a few days with my family I (like every other visit with them) feel so refreshed & motivated.  My family is so supportive of my every move.  They accept me as I am, understand my oddness :), & they encourage me to follow my "free spirit" ways.  Some time with them & some recent events have put some things into perspective & I wanted to share.  

I often am only writing updates on what is going on with Steve & me, but I have so many other thoughts floating around in my head.  I've been journaling since I was a kid because I always have so many different thoughts that I want to write down.  Sometimes it's too much to organize into a blog & sometimes there is no time to do so.  However, Steve has been encouraging me "this year" to remember to make time for myself.  I obviously will drop whatever extra I am doing if Steve needs me, but he's encouraged me to dig deeper into my yoga practice, studying/reading, & writing. Another amazing thing to me is to have the most supportive husband, ever.  He has my back in every situation and inspires me to go follow my dreams & passions.  

Since becoming more devoted to my yoga practice I have discovered a lot about myself.  One thing I knew but not the the same extent, was that I need to be challenged & busy.  Idle time is my enemy.  With idle time I have time to do negative thinking.  Since, Steve has been home yes he does require a lot of my assistance but there is also more down time than I am used to.  Before, our down time would be focused on traveling or planning for trips or simply going out & doing anything.  Now that it is so difficult on Steve we spend most of our time at home.  We do still try to plan monthly outings, but we have a lot more down time now.  Yoga has reminded me that when I'm challenging myself I am more happy and full of love.  

I try to show everyone love, but I am human, and I have my "diva" moments. 

I could chose to look at myself as somewhat impatient, spoiled, a bit selfish, sometimes potty mouth, likes to sleep & repeat myself too much, loud girl OR I could say I'm a loving, caring, compassionate, determined, fun loving, adventurous, strong girl.  It is really a choice in how I look at myself & it is MY choice.  Like I said I'm human and I have short comings, and I have spent most of my life trying to be extremely self aware of my strengths & weaknesses to continually try to work on myself.  I have a bit of a love affair with self improvement.  Probably explains my drive to have gotten my masters in clinical psychology.  I am reminded with my practice that I can sometimes be too hard on myself and that it really makes a difference in my day if I show myself more love.  

We aren't perfect, no one is, & we shouldn't think we have to be.  It' through our mistakes, our short comings, & our fall backs that we learn more about ourselves & the world.  I wouldn't be the person I am today without a lifetime of mistakes & learning experiences.  It's your choice what to do with a mistake.  You can either let it stop you and destroy you or you can let it motivate you & teach you.  The more you focus on loving yourself the more you will learn from your mistakes.  

I have written about this previously as it is something I continually work at, is also to love everyone.  There are going to be times when I disagree with others behavior/decisions, but that's okay.  It's okay to have difference of opinions and it's also okay not to like what someone does.  However, what is not okay is allowing someones behavior/choices to influence us so much that it changes our moods/takes our peace/ and makes us stop loving.  This is something I am still working on, I am not claiming to haver perfected it yet; however I have seen some huge improvements since I've gone deeper with my practice.  

The more I surround myself with positive, loving, motivated people/things the more the earth reveals positivity & love.  It's a beautiful reminder when I have a few days with so so much love in one that life is more beautiful with love.  Yes, people may still bother me, bad things may still happen, & I may still have some selfish and impatient moments, but I am more good, I am more peace, & more importantly I am more love.  The more I continue to pursue a path of love & peace the more I will find love & peace.

I'm humbled and inspired by all these thoughts floating around & wanted to share.  In other news, here are some things going on with Steve & I. :)

Our kickstarter for our documentary was funded by y'all in 15 days! Amazing & overwhelming.  It's such a huge blessing to have all of you support us in this journey.  This documentary means so much to us for so many obvious reasons.  Just a few are; awareness for ALS, pride in our story, sharing of love, & the hopefully inspire those facing difficult times to continue to fight.  The kickstarter is still open for donations until Valentines day. :) Our amazing film team said all the extra money will be put into making the best documentary they can make.  Steve & I are so excited to share it with everyone!

Steve was taken off antibiotics this month for a little as the doctor wanted to determine if they were helping keep him stable & stated that the infection has colonized and that Steve will always have it.  He wanted to determine if his body was able to "handle" the infection without the antibiotic.  I already monitor Steve closely (his secretions color, consistency, scent/tempter/all vitals/etc) but monitored him extra close the week he was off.  I started Steve back on antibiotics, the night I suctioned a mucus plug out of him, and called the doctor the next morning.  He was then placed back on antibiotics and is showing more signs of stability again.  Thanks for those who prayed and sent good vibes for his health & we always ask they continue! 

Steve's Drive Project has been going great & we recently updated the website with some new paintings.  Seeing Steve work on these paintings brings all those involved so much joy & to see you all want his paintings & to see pictures of them hanging makes us all & especially Steve overjoyed. 

Thank you all so much for the constant support.  

Thursday, January 2, 2014

2013 in review

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.

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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