Thursday, April 2, 2015

Hello are you there? Yes. Yes we are. :)

Hey Hey!  I told y'all the blog would be neglected.  I've gotten a huge dent done on my book, so I want to get back to blogging more often again.  I'm sure y'all aren't surprised that a ton has happened since I last wrote, and for those who follow us on here---I owe some updates.

Steve is stable & chubby. :)  Yes I can say this, because I am sure everyone remembers when he weighed 67 lbs right?  Well, now he weighs 130!  Yep.  Determination, positive thinking, prayers, love, good care, & the will to live are powerful & Steve amazes me more daily. 

We've had some frustrating experience with drainage around Steve's trache and the stoma eroding in result.  After a short and unproductive hospital visit it has been determined that because he is stable, his numbers on his vent are all good,& that the stoma doesn't need repaired yet, and I will be doing some wound care to help try to slow down future skin deterioration.  

Aside from that Steve & I have been busy with our passions.  I've launched my website for my malas & paintings & have been enjoying both of my creative outlets. I continue my practice with yoga/meditation which brings me something new and life changing almost daily. Steve is doing trading with the stock market & motivating everyone with his social media use.  Steve also has plans to start writing when he feels up to it some himself.  He is an amazing writer and I look forward to seeing him spread his message more.

The documentary process has moved forward.  As I'm sure y'all know the process of getting things legally sound is a long process, but there is a light at the end of the tunnel.  So very thankful for the crew and our amazing lawyer for all their hard work.  Also grateful that the wait for us to release the new version of, Hope for Steve, available to buy online & DVD to be soon.  We've been honored to be selected for the Arizona International Film Festival, the New Hope Film Festival, & to have won an international accolade award.  Stay tuned for the re-release soon! 

Well, you have my word you will be hearing from me more often & as usual we love y'all so much & have extreme gratitude for each of you.  

Monday, January 19, 2015

Hello, ground! Good to see you again.

When making goals I always try to focus us on remaining grounded.  There are some days that life is very surreal for us and it's hard not to get cocky; I don't just mean mentally but spiritually as well.  I am often saying, "If we get too far off the ground please bring us back down. "

Right around new years we had some difficulties with Steve's health, he felt so bad one night, I almost called the ambulance. "I'm sorry but I think it's just my time baby, I love you," he kept typing through tears.  This obviously is a phrase I've heard before twice when he did die on me, so it makes me sad and panic.  

Thankfully (so so so very much thankfully) I was able to get Steve back to health and then I had to bring myself back to zen.  I was so off balance so I increased my mediation side of life; which I'm still doing because it's been life changing.  We have had some really great days and great things happen the past week and it's made us float on positive energy.

We've learned that these moments aren't permanent and there is only this very moment so that whenever we feel happy, we do easily need some grounding because let's be honest we like floating.  :)  Not a bad thing as long as we can float while keeping both feet on the ground.   

So today I got some negative feed back on instagram and I had the automatic, "huh well that was mean, who the bla bla bla..."but then I stopped....  

There it was, I asked that if I got a little too off the ground to bring me back.  I'm back and yes for those who worry I'm fine, the comment isn't what the focus was in this and when I was able to see that I was able to shake it off.  

So now I am feeling grounded but full of positive floaty energy.  

Oh but for all intensive purposes, remember that words do matter.  Choose them wisely.  Be nice.  :) 


Friday, January 16, 2015


Coming into the new year Steve & I talked about some new goals we want to accomplish, kind of like we do every new moon, full moon, times we feel stagnant, etc.  We look at where we are in life and what we want different. The things Steve & I want out of this year, and life in general, are going to take work and we developed a plan to help us stay focused and see where we need to grow to stay on task. 

Steve recently has become into day trading, so if that interests you, talk to him about it.  He is eager to learn more and it's been a wonderful way for him to spend his days.  

While Steve is busy trading, he looks at it as a job. We do our morning trache care, breathing treatment, meds, etc, but then Steve is "at work".  He is focused and it motivates me to become so.  While he's working, I have started my own list of adventures.  To start with I had to find where I was spending my time, because I used to always think, "I don't have the time for anything else." After a few days of really being in the moment and paying attention to my time, I saw that although. I always start my day productive with yoga and meditation, afterwards I would find myself spending hours on social media before moving onto another project.  As much as I love y'all on social media----I finally found my time needed to focus on the new things.  

I want to learn Italian, and guitar, and keyboard, and about different stones and there uses, etc. So I'm going to & with the new focus---it can happen.  It will happen. 

I don't want to spend my days looking for little hearts to pop up on my screen I want to fill it with learning, and art, and growth.  I plan to allow myself an hour to catch up on social media as you all are so important to us, I want to keep sharing our journey, and keep in touch with y'all; but I don't want it to consume my day.  

So there you have it.  For those who may wonder--we love you all and you can be happy to know we aren't ignoring anyone---we are making shit happen. :) 

Saturday, January 10, 2015


Words have been flowing out of me faster than I can get them on the paper.  I have been working on a book for over a year.  Now when I say 'working' I mean, I would write maybe once or twice a month the past year.  Obviously, that wasn't going to make me progress.  

I have been reading a few books (bird by bird, brain on fire, writing the bones, & the artist way) and in all of them, they repeatedly say in order to further your path you have to do the art everyday.  So I began drawing daily, painting daily, and yes now writing daily.

Of course some days the words don't want to come as quickly or smoothly but if I sit and set my mind to it I can write, and if I meditate on it prior I can write things that I never actually became aware of in myself before.  I have come to 4 profound self realizations this year alone & it's day 10.  

So there may be few words on my blog for a while, but I feel this book is a priority.  You may see a lot of Facebook posts, as I'm using Facebook to help with accountability.  Y'all know my love/hate relationship with social media.  It sometimes just makes my head ache to think about it and other times I can get some of the best inspiration and encouragement there.  

So yes feel free to ask me about it, and say, "How many pages now?"  It's blown my mind that I reached the point I have and I'm feeling more empowered than I have in a long time.  

I want to thank those closet to me for not allowing me to give up on this project like I almost did.  I am so very very thankful to have so much support in putting myself out there. 

photo Raymond Adams 

Wednesday, November 26, 2014

you CAN sit with me---No more mean girls

I am writing this based on a risky decision I made yesterday.  Now it was one that was thought out, discussed, meditated on, etc, as are most of my decisions; and I knew there would be backlash) but one thing I wasn't expecting was people being just plain old mean.

It got me thinking......& no I don't regret my decision of this:

In a world where people pay more attention to people's booties, color of our skin, size, how much photo shop, etc we have lost focus on what is important. I would like to CHALLENGE everyone to put the focus back to what is important. So clearly if it takes a little T & A to accomplish this, so let's have some fun with this.  I am challenging everyone to take a sexy photo of yourself for your cause. This comes with a twist, Steve Dezember II, Sarah Spicer, Matthew Moore, & Jeff Kaplan & I will be choosing someone who did this contest best on Facebook & Instagram & the winner gets: A HOPE for Steve DVD, a DRIVE Project painting, a Hope for Steve tshirt, bracelet, car decal, & a Hope Mala. Yep that's a lot. 

ALSO we will be making a calendar of the best 12 & all proceeds from calendar sales will go to

So here is what to do. 

Take a photo that makes you feel sexy & have fun with it, talk about your cause & why it's important & where people can help. Hashtag the following:#Sexyforyourcause #HopeforSteve (so we can see & choose the winners) &#ENDALS (because clearly that's the reason this all is starting). We don't want to limit this to ALS as there are so many causes & we want everyone to be able to speak about theirs. Share on your social medias & challenge 3-as many of your friends as you want.

So mine is obviously ALS. ALS has affected my husband Steve & within 3 years of diagnosis he is fully paralyzed, vent dependent, gets fed via IV, & communicates with his eyes as he has lost his voice. There is hardly a more frightening or devastating prognosis. The vast majority of patients die within two to five years of any symptom of the disease. ALS attacks your body killing your motor neurons and muscle. Since Steve's diagnosis in 2011, we have made it our mission to spread awareness about this disease which affects roughly 30,000 Americans. Through social media, our website, and the documentary, we have tried our best to show what an ALS patient goes through on a daily basis.
Photo: Jeff Kaplan
Editor: Retoucher Bianca Carosio
Styling: Steve Dezember II
Makeup: Candice Holloway

It made me think of how "meanness" has become socially acceptable.  I am all for people being authentic and speaking out for what they believe in, but do you really have to put people down to express your opinion?  Think about it?  How many things have happened this year and where you have seen so many mean things written while people share their opinions. 

When did we let this be okay?  Is it that people feel like they can hide behind social media or their blogs etc? Or has humanity really become meaner?  I believe in the good, I see so many amazing things happen on a daily basis, in fact this photo that was a bit of an envelope push, it was 95% positive feedback, so I hate to even address the negative.  BUT it just bothers me that anyone feels they should be mean to ANYONE.

We have to stop it, only we can.   As you are typing your message or comment remember you have plenty of time to think about your response & edit it before hitting send.  If you so strongly disagree & feel disappointed or angry maybe take a step back.  If expressing your opinion is so important after a few hours then do so but there is no reason to pull a mean girls.

I say we put a stop to this mean girl mentality. I say you CAN sit with me.  NO matter what color your skin is, or your religion, or you opinions of me or what I choose to do.  You can sit with me & I will show you love.  & I BEG of all of you to please show more kindness to one another.  We don't have to agree but we also don't have to be enemies.

Love really is the answer.

PS Yes for those who asked if I'm that desperate?  I am. My husband is dying.  Everyday ALS robs a little more of him from me & our life.  Every day he needs a little more sleep and feels a little more weak.  Everyday he faces another uphill challenge with courage. So yes, I am desperate. I am desperate people finally stand up for what is important because the whole world is desperate right now.  We need our voices & we need them to be speaking for the greater good.

Tuesday, October 28, 2014

Chaotic minds lead to beautiful messes

Those of  who have been following me, know by now, I like to explore who I am & I like to be creative in one form or another.  As I'm expressing creativity I'm experimenting with all things; painting, drawing, jewelry, writing, etc.  The more I have continued to learn about myself and how and why I am who I am + the combination of exploring creatively, I've really grown a life changing understanding of myself.  

My mind is chaotic, wild, it' doesn't stay in lines, or even know how to have them.  It's random, it thinks of something different every minute of the day.  It's loud, colorful, visual, & evolving.  I used to want to paint like I was an organized thinker.  I'm not.  Once I started understanding, "why do I have such a hard time being organized", or "working in a normal every day is the same thing job doesn't work", or "some days I want to write, some days I want to draw, some days paint, some clean; but if I don't want to do one of those things a day and I try it doesn't work."  My mind doesn't work with always doing the same thing, it's pulled by what energy I have that day.  My mind doesn't actually run the show here, my heart does.  

Realizing this was as hard to wrap my head around as it is to write about.  However, knowing that when I'm feeling like I want to paint and learning to paint how my brain works, I believe I have found my place.  The more I find my place the more the creative outlets start to find there place too.  

So today, after a small painting hiatus (between remodeling our room, Steve's birthday, the slight obsession with mala making, etc) I painted the 4 happiest, feel good, powerful energy, favorite paintings I've ever painted.  It was like my brain & heart were showing up on the canvas, once I stopped putting myself in lines.  

Wanted to share & encourage y'all to keep exploring yourself and you never know what you'll discover. 

Thursday, October 16, 2014

Hope Malas

As y'all have seen me blow up social media recently, I have become slightly intoxicated (sounds better than obsessed right :)) with making mala necklaces. They have special meaning aside from the initial meaning behind a mala and I wanted to share it with y'all.  

For those who aren't familiar with the story behind the mala.  These beads are used in many spiritual practices to help with prayer or meditation.  There are 108 beads that help you count while you are either repeating a mantra, a chant, or a prayer.  I find malas very helpful to use while I meditate, to help me focus and stay in the moment, then I find wearing that mala through the day to be a reminder to breathe and remain present and positive.  Often when I'm wearing a mala if I find myself stressed out, I instantly begin to count the beads which instantly grounds me and helps me shake off whatever stress was creeping in.   

Now obviously depending on the religion there are different meanings behind the beads or seeds used.  I have enjoyed learning about what particular value each different seed, rock, gem have to them and learning about there elements.  It's been a nice way for me to go deeper with my meditation as I learn but also making the necklaces themselves make me happy.  Often Steve wants me to sit with him and the malas are a great way for me to be able to be present with him but also be creating.  I am a very stir crazy personality so these ground me. 

My Hope Malas are all made with love and different intentions.  I want them to be able to be used by anyone no matter what your religious or spiritual beliefs to help you have the best most peaceful life possible.  If you wear them because you think they are pretty & they make you feel good then great!  If you want them to help with a meditation or a chant or a prayer great!  I always encourage people to do what is right for them and what feels right for them, and my malas are no different.  

So as of now 2 stores are selling them & I have some on Etsy.  I don't like the feel of Etsy so I am currently working on a website, but if you want a mala email or message me.  :) I can either create you something that I'm feeling that day, a certain color for you, or even use certain seeds or beads depending on what you feel you need.  

Thank y'all for constantly surrounding me with so much love & acceptance.  <3