Tuesday, July 22, 2014

Positive energy for the win

Sometimes life presents certain situations that could get you down, if you choose to let it.  Sometimes it's so easy just to pout, scream, cry, swear, and stay in bed a few days.  However, that route isn't very satisfying.  It makes you feel bad, sad, even angry.  Holding onto those feelings eventually can cause physical sickness.   So why not do the work & feel better?  Once you learn to start thinking more positive, working on communicating why you are feeling these things, and then working on letting them go, the work becomes easier.  To the point where you begin to say, "Yeah the whole staying in bed pouting thing is not an option,"  and you put your big girl pants on and do what needs to be done.  

It's a beautiful thing actually when you can start to catch yourself in that process.  You say "ah wait I'm focusing on the negative right now, and allowing that to control my mood and feelings,  I don't want to feel negative, I want to feel positive."  You then change your focus. It's beautiful to reach that point.  Be patient with yourself because somedays the negative will be harder to kick than others, but if you can be the one to stop it, that's progress.  Each time you stop it and shift your energy back to positive, the easier it becomes to remain positive and come back to positive more quickly.  

When it is hard ask.  The universe will help you find the positive energy and let go of the negative if you ask.  Pray for it, ask for help getting the positive energy, surround yourself with positive people, plan fun things, do a sage cleanse, do some earthing etc, whatever you find that works for you.  If you set your intentions of wanting to remain positive and something negative comes up, ask for the positive; it will come.  I promise. 

I can say this because it's been a process of mine for a while, and I have been seeing the change & feeling it.  I can honestly tell you from experience that if you do the work, it will pay off. 

Monday, July 21, 2014

It literally changed my life

I don't know if I'm alone on this but I have a lot of "it changed my life" moments lately, and here's what I think about it.  Before, when I never paid attention to the world around me, hardly even paid attention to the people I was with, I never had a lot of life changing moments.  I've always had a positive outlook on life but never really experienced a lot of ah ha moments. Now that I am open the experience, it happens more often.  I see it in everything.  

The amazing people we met on our honeymoon, taught us the value to looking at the simple things in life, being grateful, & focusing on what we do have.  Also, the amazing feeling we got from traveling and connecting with others inspired lots of new experiences.  Wanee (the first year and second year), 2012 Wanee taught us to get in touch with nature and others in a deeper way. Taught us to relax more and have fun; always dance, be happy, & to try to make it to as many shows as we can because music is healing. The 2013 year is when Michael Franti showed us the most amazing kindness and shared our story with thousands of people (both at the show & after online).  Steve & I have always wanted to reach the massess with our story because of the ALS awareness & our story of our love, and with Michael's help we have reached more than we imagined. The documentary premiere even; to be able to feel and revive that much love from the room. It was a dream come true shows us that if you have a dream, never doubt yourself, go for it. If you work hard enough it will come true. ☺️

You have to be open to what the world is presenting you with---if not you will miss lots of life changing experiences. 

So give yourselves a chance for these moments to happen. Open your hearts and your minds, & be present.  You will be amazed how many days become more than just amazing but they change your life as well.  

Friday, July 18, 2014

Self love

 I've had a few people message or say sly remarks recently about my like of photos of my self, a selfie, or a photo shoot. Photo shoots are fun y'all. Seriously & if you don't think so you haven't done it up right. The perfect hair & makeup, awesome outfit, great photographer who understands angles and lighting and capture you looking your best. That feeling of seeing a photo and seeing your true beauty. It's something everyone should feel. Imagine if we all realized how beautiful we actually are. Showed ourselves more love---how much happier the world would be.

I grew up thinking I was ugly.  More awkward than ugly but still didn't consider myself pretty. No one should ever feel that way. That's why getting dressed up & taking photos makes me happy & should make you happy too. Have fun & love yourself more. You are important and taking care of you is important, & you can't properly care for you until you love you. Let's stop beating ourselves up & start lifting ourselves up. So when someone tells you to stop taking so many photos of yourself---say no I think you should take more of yourself. ❤️

So on the subject of photo shoots, I want to tell y'all about my Free People dream come true.  A few months ago they asked me to be apart of their fpme shoot.  Of course I was worried about who would take care of Steve, but thankfully he saw this as a fun break for me, and insisted.  Thanks to my friends Jen & Meradith for coming to stay with Steve I had the chance to go have the best day! check it out :)  Free people inspires girls to be free spirits, strong, determined, adventurous, loving, happy, & well rounded girls.  Girls that should be looked up to, that inspire others to be great & look great while doing so!  I love to take photos in their clothes & share them on their site.  Since coming in contact with them they have sent me a few outfits as gifts, simply for being a free people girl.  It's an honor & wanted to share this side of what makes me, me. :) 

photo: fp Jana Kirn

Thursday, July 17, 2014

How my one day without social media changed my life.

Yes you read that right.  I went 24 hours without any social media. 

Normal everyday: Wake up, check on Steve, Steve's still sleeping.  I pick up my phone, play on Facebook for 20 minutes, replying to 40 things and getting annoyed at the timeline.  I move on to Instagram for 30 minutes, check the comments, check the latest posts, and search my favorite people (yes so dedicated the search happens occasionally).  Then on to tumblr for 15 minutes, checking for something to strike my eye, then the mail box dings, reminding me that I have to clear the mailbox full of junk mail.  Of all the emails I keep 1 of 60 on average.  Then Steve wakes up.  Of course I'm focused on only Steve when I'm taking care of him, but that is literally the only time.  I'm even face booking in my sleep these days.  Of course while someone is here we are instragraming, I'm constantly facebooking while watching whatever is on TV or netflix in the evening,  & the obligatory photo of my evening yoga or whatever "set" I created that day.  

If you really know me you even know my nickname is Mrs. Facebook.  I used to justify it, "Oh I need to stay in touch with my family," or, "It's my job, we having a following, we live off these paintings, this DVD is a dream, etc."  Now obviously social media is always going to play a large part of my life, but I felt the need for balance.  I felt overly involved in social media, whether it be promoting Steve & I (sounds so tacky right), or  feeling like I know someone simply because we are friends on social media.  I have great real life visits with so many incredible people, I need to be more present in those moments.  

This day has been an enlightening and empowering experience.  I would go for my phone and immediately be brought back into the present moment.  I was so focused on everything I was doing.  Proved the theory right, I experienced very minimal ADD.  I got so much done in such a short time, I was efficient...not just efficient, everything was done well.  I feel empowered that I set my intentions on something and I followed through, I feel enlightened in the simple sense that I really can control my scatter brain, cluttered ways.  Granted this will be a process and will require regularly scheduled social media breaks in order to clear the mind again, but this is a life changing start.  

The realization.  The ah ha moment.  After all, that enlightened feeling is one of life's greatest feats. When is the last time you unplugged?  

Wednesday, July 16, 2014

Upcoming goodness y'all

Y'all have been waiting for the DVD release, right?  :)  Well you can order now & they should be shipped end of July-Early August.  To order click here!  We are so excited! Thank y'all for the patience, love, & support! :)

In just 2 weeks Steve & I will be receiving our VW camper van which we will be doing some fixing up on (which will include some fun paint sessions).  Because of this my escape is currently for sale.  Here is the add to my escape for anyone who may be interested.  Steve has wanted to always have a way to be in my future & this van is a way he can do so---he & I of course still hope for plenty of time to put our own stamp on her & take our own adventures. Most amazing man in the world. 

August 2nd-Matthew Moore anual golf tournament is to benefit us again this year.  We all know Matt can put together an excellent golf outing.  The 2014 MMI will be August 2nd at the Heritage Golf Links. Tee times will start at 2 pm. If you would like to sign up to play, donate a silent auction item, or sponsor a hole please contact myself or Matt.  hope.ann.cross@gmail.com or mmoore2784@gmail.com  There will also be a pub crawl following---stay tuned for details. 

August 23rd-Garrett from lululemon athletica Howell Mill is proud to present a special donation based screening of The Documentary Hope for Steve on Saturday, August 23rd at 8pm. There will be a screening of the documentary, lots of socializing with amazing people, 
& drive paintings. 

Steve has been working hard on Drive paintings the past few weeks.  Stay tuned for lots of new paintings to be listed shortly & check out the ones available now.  www.driveforacure.com 

I'll close this blog with a cool thing---
Mike Bodker, Mayor of Johns Creek & Johns Creek City Council Honored Steve & myself yesterday for our efforts to spread ALS awareness.  Such a wonderful & cool honor.  

Lots of love! 

Tuesday, July 15, 2014

Open Hearted Sharing

Wanted to start this blog with saying that although sometimes it is very hard; Steve & I want to be very open with y'all, we come from a genuine place where we hope our true journey will help others. Sometimes it's hard because the things we share are very personal & sometimes it's because I feel like we need our space or privacy.  A lot of thought goes into what we share & how we do it.  We never want to come from a negative space, but we always want to be honest.  Some things with ALS just suck & there is no way to put it other than just that.

So a small update without giving too much information.  As we know, the disease progresses and more things happen to a pALS (person with ALS) body.  For instance due to Steve only being on TPN (IV food) because of his gastroparesus (unable to clear stomach) he now has developed what is called anemia of chronic disease.  Where he is no longer able to make red blood cells & will require blood transfusions frequently.  Thankfully we have a great team working with us to assist in this complication.

Well this weekend, another challenge has presented itself to us.  For those who wonder, Steve & I can still be intimate. :)  Lucky us right?  Well, we thought that might be taken away from us recently, as Steve is no longer able to void (urine output) without a catheter in.  Progression has made his muscles too weak.  Steve & I  have spoken with our nurse/doctor & we intend to do an in & out foley catheter, which is less invasive, while still making sure Steve is able to empty his bladder.  We had a sad few hours until we discovered there are ways around this new complication, as there usually is.  

We feel blessed to be surrounded by so much love & support--We want you to know that it does help us get through the hard times and to continue this fight in such a positive way.  

More updates on some upcoming things we have coming up tomorrow! Here are a few recent photos. 

Lots of love. 

Thursday, June 12, 2014

Reviews from the Hope for Steve documentary

We've gotten some great responses from our documentary premiere, that I wanted to share with everyone.  Thank you to those who have reached out to give thoughts and feedback, we appreciate each kind word & suggestion we received.  

Garret Cockayne (Lululemon manager)
"Since attending the premiere of 'Hope For Steve' at the buckhead theatre, I've been asked by countless people my thoughts on the film. The only word that comes up for me is honest. We got to see the good, the the bad, and the ugly in a compassionate & non-exploitive way; which is, sadly, something that can be missing when telling the stories of individuals in situations that we may not fully understand. At its root it was a love story."

Matthew Moore (Producer/editor/writer) 
At the after-party, I shared a drink with a woman who didn't know anyone at the premiere. "Hey!" she said, offering her hand, bracelets dangling, "I gotta introduce myself to some people." 
I quickly learned that she had come to the premiere because her daughter had been diagnosed with ALS at the age of 34. "Except, my daughter's significant other didn't make the same choice that Hope did." 
For the first time I am watching our film on a giant theater screen with people I don't know. All of those encouraging YouTube comments and Facebook likes have showed up to see the cinematic manifestation of the story they've been following for months, some of them years. 
For the 349th time I listen to Steve make the joke about "this" not being an old man's disease, "I was 28 years old when I was diagnosed . . . at least that's what I told her." he says, slyly looking to his new wife for laughter. 
I can still wath the film anew as if I had nothing to do with making it. It's doesn't matter that I know everybody's line by heart. 
Just minutes in people are laughing. They seem relieved that there is joy and humor and that this story isn't just a tragedy, if it is one at all. And when it's silent, the audience is not restless. Maybe there are sniffles, maybe there are tears, but our audience is riveted. 
Perhaps the thesis of the film, a comment made spur of the moment by our costar in a spontaneous interview given nearly a year ago.
"That's when he was like, you know, you don't have to stay with me, I understand if you go. . . . and I just never understand why he said that? I guess he was looking out for me, but I never would have left him."

Charlotte Tate (Artist)
Words can hardly even describe how I feel after watching the premiere of The Hope for Steve documentary today. The story of Steve Dezember, 31, who has ALS, and his amazing love story with is beautiful wife, Hope. 
The tears started within the first minute and never stopped. There were tears of joy, tears of heartbreak and tears of complete laughter. This movie was so unbelievably moving, as I knew it would be, but what I actually saw today with so much more than that. I am mad as hell at this horrendous disease that is robbing this beautiful man's life, but then inspired and moved by the love and joy Hope brings to Steve's life each and everyday. Their love can move mountains and change the world.I'm mad as hell that research for this horrendous disease is so unbelievably underfunded, but then I am so hopeful that something can be done to change that. That something starts with this movie. This love story of Hope and Steve.
They truly exhibit “for better or worse, in sickness and in health” love; the overwhelming love that everyone hopes to find in their lifetime. The love that God designed for us to share, to really live. The love that He tells us about in 1 Corinthians 13:8, “Love… always protects, always trusts, always hopes, always perseveres. Love never fails.” That is Hope & Steve love.  While they depend on others for support, so many others look to them to for inspiration. They set the benchmark for living each day to the fullest. They live on very little but have so much. Despite his health and their financial situation, they are truly rich. We all have so much to learn from them. Those of us who were able to be at the premier walked away better than we were when we walked in. We witnessed a transparent tale of two people that fell in love and held on tight through the whirlwind of life. The Documentary: Hope for Steve… love, laughter, and standing ovations.

Betsy Pyle Armentrout (Follower/Supporter)
 I learned about your event in the AJC on Saturday. My family has battled a related degenerative neurological disease and the article grabbed my attention. I did not know Hope and Steve prior to watching the documentary. Having witnessed the disease and their relationship through the documentary, I feel like a part of their community and now a warrior in their fight. Their candidness, humor, and integrity throughout the movie imprinted in my heart. Thank you for being courageous. These diseases tend to have quiet voices. Thank you for shouting words of love, optimism, and pain. Your fight and your voice makes a difference

Amber Goodwin Cloy (Follower/Supporter)
The Documentary Hope for Steve premier was emotional… impactful… captivating! We were invited into the life of Hope & Steve, to share in their joy, and in their sorrow, to get a glimpse into their love story. 

Gareth Asher (musician)
The movie is an inspiration for the world to wake up and pay attention to how precious each moment truly is.  Hoe and Steve want us to live our lives full of greatness.  They want us to hug the ones we love and not ake a single minute for granted.  Time is a gift.  We will laugh, we will cry, but we will preserve together, all in opes of awakening the mind that can rid our world of this horrible disease.  

Jeremy Brown (owner of Love is Art/Artist/co-directer of the drive product) 
The film was absolutely amazing.  It was a perfect blend of information & heartache, yet extremely uplifting and inspirational. The film gave me a glimpse into the disease, while providing the powerful message of hope & living every moment to the fullest.  I knew I would shed some tears of sadness throughout the film, but was pleased to also shed many tears of joy and laughter.  The film's ability to touch on so many heartbreaking  emotions, while at the same so many heartwarming emotions.  I left the film with a warmth in my heath and an outlook of cherishing every breath.  Two thumbs up.  

Kristen Wolf (Follower/Supporter)
I have always been a fan of love stories. What girl isn't? Last winter I went to see my friend Gareth Asher perform at Steve's Live Music in Sandy Springs. It was a beautiful Christmas show and the band all wore Santa hats and even sang some carols. In a little side room off to the left there were beautiful paintings set up with the name "DRIVE" in bold. There, I first heard the story of Hope and Steve Dezember, and although they were at the show that evening, we had not yet been introduced. Atlanta is a small town, and it seems that Hope and Steve attract the same kinds of people I love into their lives as well. Over the year I kept hearing bits of their story and seeing different friends working with the couple to create artwork, awareness, and concert benefits for the couple. The time came for the Buckhead Theatre Premiere and I had friends taking pictures for the event, singing at the even, and donating artwork for the event. Everyone was so excited and eager to see a film that would inspire a lovesick generation and culture to believe once more that love does indeed conquer all. At least, after the insane lack of healthy and successful relationships I've endured, and consoling multiple friends with aching hearts over too new breakups, that is why I went and what I needed that particular Sunday afternoon. I remember going with Adelaide Tai and hearing her say "I think this will be good for our spirits!" 
The film was beautiful. It captured the spirit of the couple so deeply. You watched laughing and weeping, feeling like it was your best friends going through this terrible disease with such grace and love. For some, that was the case, but I'd never actually met Hope or Steve, but in a weird way-- I knew them. The film captured how terrible ALS is while allowing the light of Hope and Steve to radiate through to the audience. What was captured by the lens made you care and made you pay attention to this couple who refuse to let ALS have the last word in their lives and in their love.
If you want something nice and easy, do not watch. If you want to go about your life unchanged, avoid this film. If you're looking to be inspired and moved, not only watch this film- but share it with others. Ask what you can do to help, and think about how much greater life is when the stakes are raised and love is on the line. This film is a call to action against ALS- you cannot watch and sit idly by.

Remember you can purchase your DVD now here

Lots of love!