Hope for Steve the documentary Premiere
I never like to use the word 'perfect'. It's usually a false word, nothing really is perfect. However, I have no other word for Sunday, June 1st, our documentary premiere. It was the perfect day.
For starters Steve being able to attend this event is reason to celebrate alone. For those who have followed our journey and are familiar with ALS, it's day to day. The week leading up to the event there were 4 of the 7 days where he would NOT have been in the right condition to attend. So it's a true blessing, and one I want to shout to the world, that Steve was healthy enough!
Now something most don't know is that I enjoy planning things, so I was very hands on when planning our premiere. It was fun meeting with our group of amazing volunteers and our team to discuss all the exciting things planned for the day. It was an amazing feeling each new person who contacted me with a sponsorship, silent auction item, or donated piece for the event. It's amazing to watch people come together with such passion for us.
So we had some great visitors come in town for the premiere, from childhood friends to family. It's always nice to have visitors but even more so when it's group of visitors! :D
For starters Steve being able to attend this event is reason to celebrate alone. For those who have followed our journey and are familiar with ALS, it's day to day. The week leading up to the event there were 4 of the 7 days where he would NOT have been in the right condition to attend. So it's a true blessing, and one I want to shout to the world, that Steve was healthy enough!
Now something most don't know is that I enjoy planning things, so I was very hands on when planning our premiere. It was fun meeting with our group of amazing volunteers and our team to discuss all the exciting things planned for the day. It was an amazing feeling each new person who contacted me with a sponsorship, silent auction item, or donated piece for the event. It's amazing to watch people come together with such passion for us.
So we had some great visitors come in town for the premiere, from childhood friends to family. It's always nice to have visitors but even more so when it's group of visitors! :D
Steve & I love a reason to get dressed up, especially when that reason is going to a theater to watch the documentary we have been working on for close to 3 years on the big screen surrounded by some of our closest friends, family, & supporters. The day blew all my expectations out of the water.
We get dressed up, gather up the troops, and head on the way. I had been on the phone straight for a full week before working out details with all of our team & the day of all the texts and calls were calm & encouraging. Saying things were going great & that the place was already full! We arrive around 3:35, time to let some of the crowd get inside, but still time to take photos on the red carpet. We were greeted by a beautiful crowd upon pulling up to the venue. After snapping photos and a quick news interview we walk through the crowd to our seats. I get chills when I see the amount of love others show Steve & I and this day was no exception. Cheers and clapping as we walk through the crowd to the theater and so much love you can feel it. As we find our seats we continue to try to say hello to everyone, we realize that it's a packed house, close to 700 people came!
Anxiously awaiting the movie we all get settled into our seats. Now Steve & I have only seen a rough version of the movie before this day, so we were very ready to finally see the finished project we have all worked so hard on. From the moment it starts, I have butterflies in my stomach and cannot sit back. I hold tight to Steve with a handful of tissues ready. The tears start right away, and as I find myself focusing on wiping Steve's tears away I am able to catch glimpses at the audience wiping away their own. Hearing the audience cry, cheer, laugh, and chant with our documentary is a feeling unlike anything I've ever felt. It was a moment that I will replay in my mind over and over. That kind of feedback is what you want from your audience. The film goes on for about an hour & 10 minutes. I clean Steve & myself up & get ready to get on stage.
I was surprised that I had no nerves of the idea of getting on stage; I was so happy with the movie, felt like it showed our story so well, I was excited to hear the audience's thoughts, & for Steve to be able to see just how many people were in attendance. Watching his face as I wheeled him out to the standing ovation filled my heart with so much joy I had to choke the tears back. That moment right there made the stress of making sure the film is just as we want it, the stress of planning an event, the stress of getting Steve out of the house, the stress of every thing very well worth it.
::SIDE NOTE:: I know that there may have been more feedback and questions from the audience and we are truly thankful for the response we have gotten thus far. If you were in attendance and have any further questions or thoughts about the film, please do not hesitate to contact any of us; via Facebook, email, text, whichever.
My review on the movie. :) I have to say that I loved being able to see Steve & my personality shown so accurately. We really are just a bunch of goofs that are wide open books. Steve has such a sense of humor that shines bright & you can see that I have no shame. :) You get a very intimate look into our relationship even some of the dark sides. We of course aren't "dark" people and didn't want a "dark" movie, however, ALS has some real life "dark" moments that have to be shown. I believe by us showing these hard to watch moments and us overcoming them together is part of what will help inspire others. I am proud of our team for us all having such strong ideas and opinions for being able to come together and make this happen. I believe we can change the course of the disease through this as we do show accurately what ALS has done to Steve. You see him being athletic to him being stuck in the bed to me lifting him out. It shows the melt downs, it shows the tears, and it shows the fun! :) We have some friends and family say some very powerful thoughts and messages also. Oh and can we talk about the sound track! Michael Franti, Gareth Asher, Dave Matthews, Nahko & Medicine for the People, Zara Sky, Sam Sniper---hello! PS look up the Hope for Steve playlist on spotify. I am pleased that we were able to show the full story of Steve & I between the medical side, the love story, & our adventures.
So what now? This is what : Buy a DVD $19.99 & 2 dollars from each DVD sale goes to ALS TDI. Share this blog, share the trailer, share the documentary Facebook page, share the website, the HOPEforSteve page, share the link to buy DVD's, etc. :)
Special thanks to: First of all to everyone who helped us financially make this happen. Between the kickstarter and the sponsors, you all made it possible for us to make this film come to life. Thank you too all who came to the premiere, you all helped make the night perfect. Thank you to the crew (Matthew Moore, Sarah Spicer, Taylor Graves, & Eric Fraser) for all of their hard work in getting our story out to the masses and presenting it so well. Thank you to all of our volunteers at the event. My dear friend Stephanie Cottle from SCC presents took charge of making sure the day of went great, plus friends Erica Adams, Jennifer Soule, Daniel Friedgood, Sean Canavan, Travis Nolan, Stephanie Johnson, Ashley Shepps, Laurie Moletta, Ben Ritter, Marc Hewlett, Jeremy Brown, Nicole Higgins, Abby Franklin, Jared Lee, All about props, Visual Lab, Lori Prince, & Kaylin Prince. Our photographers Raymond Adams, Deelite Photography, & John Ramspott; & our amazing cinematographer Jeff Kaplan. Our musicians who played during the opening hour: Gareth Asher & Zara Sky. Thank you to our families for supporting us and traveling to the event. Thank you to our friends who all donated to the silent auction: Kristen Matalski-Rand, Garret Cockayne, Amy Bridges Spivia, Sara Lua Designs, Soul Makes Jewlery, Cold Georgia Clay, Lux Divine Jewlery, Skyline Fever, Roots and Feathers, Whispered truths, and many more.
To see more photos from the event go like the Hope for Steve documentary Facebook page where all the photos have been uploaded.
So that happened. :)
Steve & I have been having a lot of, "So that happened..." moments & I wanted to share them with y'all.
May was a busy month that started out with a fun photo shoot with the free people bloggers. For those who know me, know I love clothes. Seems half the time I get the strict, "Please do not spend this gift on bills, buy something fun," order I tend to get a free people item. But most of my clothes were actually Steve using his "fun" money buying me a gift. (Yes he is amazing. :)) Well, I am a fan of all free people not just their clothes. Their blog gives lots of natural beauty tips, inspirations, & lots of encouragement for women to follow their dreams. They teach women to find their freedom & what makes them happy. My friend Kylie and I used to always pretend we were shooting for free people at our photo shoots---we would find loads of inspiration from every catalog and blog. So shooting with them was an amazing experience. Not just because I'm a fashion junky who loves their clothes but also because it was a day to just me, doing what I love. I don't get many of those these days---was hard to fully set my worry about Steve away but I did enjoy the day & the chance to meet so many great girls. Check the blog here. (Disclaimer: I'm sure this goes without saying I love taking care of Steve also :))
We did several huge news interviews leading up to the premiere also. We hope with each of these stories we reach more people to help get our story out to the masses.
Yahoo Health
WSB
abcnews
HLN
AJC
Tomorrow's blog is going to be all on the premiere! So excited to share thoughts of the night & movie with y'all as well as photos from the event. Wanted to touch on these 2 big moments and some of the news we've gotten before the event. :) Check back tomorrow afternoon.
Love & light!
May was a busy month that started out with a fun photo shoot with the free people bloggers. For those who know me, know I love clothes. Seems half the time I get the strict, "Please do not spend this gift on bills, buy something fun," order I tend to get a free people item. But most of my clothes were actually Steve using his "fun" money buying me a gift. (Yes he is amazing. :)) Well, I am a fan of all free people not just their clothes. Their blog gives lots of natural beauty tips, inspirations, & lots of encouragement for women to follow their dreams. They teach women to find their freedom & what makes them happy. My friend Kylie and I used to always pretend we were shooting for free people at our photo shoots---we would find loads of inspiration from every catalog and blog. So shooting with them was an amazing experience. Not just because I'm a fashion junky who loves their clothes but also because it was a day to just me, doing what I love. I don't get many of those these days---was hard to fully set my worry about Steve away but I did enjoy the day & the chance to meet so many great girls. Check the blog here. (Disclaimer: I'm sure this goes without saying I love taking care of Steve also :))
Aside from our normal busy visits we have weekly, May also included planning the premiere for our documentary, a lot of publicity/news/papers/interviews, & Dave Matthews.
So after missing the chance to meet Dave Matthews last summer due to Steve being hospitalized we had our chance to go again May 25th as Dave came to Lakewood. We had things planned when Steve suddenly got sick 2 days before. After asking everyone on Facebook to pray & send good vibes Steve mustered the energy to go! (It works). It was not only great to get out to a show, but it was an amazing show. Steve, myself, Danny, & Jen drove down & met the crew & Stephanie out and enjoyed lots of dancing and laughs. After the show, the 4 of us went backstage. It was a surreal moment when Dave came out & he said to us, "I'm saving you all for last so I have a little more time," as he worked his way through the group of people waiting to meet him. Carrying on conversations, each one being cut short to move to the next. The first thing he said to Steve was, "I'm so humbled you made it out to see me & feel so honored seeing you!" He then proceeded to tell us he was in awe of our spirits and love & that he was following us closely, thank you Jim! :) It was a moment Steve & I will never forget & the genuine care & love that we received from Dave in those 8 minutes still seems like a dream. Steve couldn't stop smiling to the whole night. :) Thanks to Dave's with hand man, Jim for helping make this night so perfect! :)
We did several huge news interviews leading up to the premiere also. We hope with each of these stories we reach more people to help get our story out to the masses.
Yahoo Health
WSB
abcnews
HLN
AJC
Tomorrow's blog is going to be all on the premiere! So excited to share thoughts of the night & movie with y'all as well as photos from the event. Wanted to touch on these 2 big moments and some of the news we've gotten before the event. :) Check back tomorrow afternoon.
Love & light!
Earth Day
Today is Earth Day & I wanted to write a blog on why Steve & I find that important. :)
Steve & I do all we can to help the environment; which isn't easy with all the medical supplies we have, as some are not able to be recycled. Because of this we are very conscientious to make sure we recycle what we are allowed to. We do other efforts as well that include eating locally/supporting organic sustainable farming/take reusable grocery bags/using only what we need/etc.
So why is Earth day important?
Well the Earth deserves a day because hello without the earth there is no us (think people sometimes forget that), but much like valentines day isn't the only day you should show love, one day of paying attention to the Earth is not enough either, but it's a great day to get people to start paying attention.
What can I do to help the Earth?
Lots! :) Contrary to popular belief, you CAN make a difference. I know people often say, "My few plastic bottles & cans don't make a difference." Well, did you know just one can saves enough energy to run a TV for 2 hours? If one can does that imagine if you recycled every can. Recycling one plastic bottle can give a lightbulb power for 6 hours. That's some knowledge that makes you realize every effort does make a difference.
Steve & I do all we can to help the environment; which isn't easy with all the medical supplies we have, as some are not able to be recycled. Because of this we are very conscientious to make sure we recycle what we are allowed to. We do other efforts as well that include eating locally/supporting organic sustainable farming/take reusable grocery bags/using only what we need/etc.
So why is Earth day important?
Well the Earth deserves a day because hello without the earth there is no us (think people sometimes forget that), but much like valentines day isn't the only day you should show love, one day of paying attention to the Earth is not enough either, but it's a great day to get people to start paying attention.
What can I do to help the Earth?
Lots! :) Contrary to popular belief, you CAN make a difference. I know people often say, "My few plastic bottles & cans don't make a difference." Well, did you know just one can saves enough energy to run a TV for 2 hours? If one can does that imagine if you recycled every can. Recycling one plastic bottle can give a lightbulb power for 6 hours. That's some knowledge that makes you realize every effort does make a difference.
So how you can help:
- Recycle (thankfully it's become easier to recycle this day & age---if you don't have a company that comes to your house you can drop it off at several places click here to find a place.
- Reduce your use (this includes only buying foods you will eat/turn lights off when not using them/turn water off while brushing teeth)
- Use a reusable grocery bag (Did you know it takes 400 years for some plastic items to decompose)
- STOP buying plastic water bottles---use a britta, fill up a to go cup of water
- In general plastic sucks. It's clogging our oceans and killing our wildlife & it's overused in the US. If you can buy something that is a plastic alternative (paper cartons of milk, paper or glass straws, reusable bags, paper products, etc)
- Plant a tree---yes---the world needs more trees everywhere!
- Eat locally (farmers markets, shop the local section at grocery store, etc) It uses energy to ship your food from somewhere else.
- Eat organic. The pesticides that some non organic farms are using are causing so many problems beyond what happens when you consume them. It gets in the air, it gets in the oceans. There IS a link between lots of diseases (including ALS) with exposure to pesticides.
- Now I am the first to admit if the bug is in my house, I tend to kill it rather than pick it up and place it outside (wish I could do that but shutter, just can't) however, if the bug is outside let it live, it's serving a purpose out there.
- Don't litter. Sounds common sense right---well if so then the roads, oceans, forests, etc wouldn't be so covered with litter.
- If you see litter & can safely---throw it away!
Those are just a few ways to help.
The world is a beautiful place and it's our only home. It's up to us to take care of it.
I know this isn't the normal update blog, but wanted to write about something important to us. Side note: Steve is doing pretty well still fighting off some infections but is doing pretty well at it, he's gaining healthy weight, and is noticing more energy.
We love y'all just as much as we love the Earth!
I believe in the good things coming
Some exciting things to write about.
For starters with the weather getting warmer mostly it's been a lot easier to get Steve out & about so we've done some fun outings & have some exciting ones planned. :) Lots of concerts & things we plan to get out to so keep an eye out for us. ;)
Biggest thing I want to talk about is our premier for our documentary! So exciting we have the date & time that people will get to see our film! Wanted to give some details, the link to buy tickets, as well as answer some most common questions for you all.
So Mark your calendars, June 1st from 3-about 6 or 7 come to Buckhead Theater to experience some live music from two of our wonderfully talented friends who's songs are featured in the documentary; Gareth Asher & Zara Sky, bid on some exciting silent auction items, enjoy the cash bar, and great company, followed by the viewing of the film. After the film shows we will have Q & A with Steve, myself, & the crew, & announce winners to the silent auction.
If you would like to join us click here to get your tickets now.
Common questions:
Who do I contact if I want to be a sponsor or make a donation?
You can contact anyone in our crew. Including me or Steve :) Yes Steve gets facebook messages.
Where can I find out more about sponsorship?
We have an electronic version of our sponsorship packages as well as Sarah, Matt, Taylor, or I would love to chat to you about it.
What items are you needing for silent auction?
Anything you would like to give. Jewelery, Art, Restaurants, etc.
How else can I help?
If you would like to help reach out to me & I will let you know more specific needs.
**Also, word of mouth is a huge way you can help. Share our story, share the trailer, share the ticket sale site, share this blog, share anything & that would help a HUGE HUGE way.
When can we buy a DVD if we can't make the premier?
We plan to have DVD's available by the end of June. We will give you updates as we get closer to the time. We will make sure you all have a way to see the film.
Again thank you all for the constant support & love you surround us with. Thank you for helping make this documentary a reality we couldn't have done it without you all.
Here is the trailer for the documentary. Enjoy!
For starters with the weather getting warmer mostly it's been a lot easier to get Steve out & about so we've done some fun outings & have some exciting ones planned. :) Lots of concerts & things we plan to get out to so keep an eye out for us. ;)
Biggest thing I want to talk about is our premier for our documentary! So exciting we have the date & time that people will get to see our film! Wanted to give some details, the link to buy tickets, as well as answer some most common questions for you all.
So Mark your calendars, June 1st from 3-about 6 or 7 come to Buckhead Theater to experience some live music from two of our wonderfully talented friends who's songs are featured in the documentary; Gareth Asher & Zara Sky, bid on some exciting silent auction items, enjoy the cash bar, and great company, followed by the viewing of the film. After the film shows we will have Q & A with Steve, myself, & the crew, & announce winners to the silent auction.
If you would like to join us click here to get your tickets now.
Common questions:
Who do I contact if I want to be a sponsor or make a donation?
You can contact anyone in our crew. Including me or Steve :) Yes Steve gets facebook messages.
Where can I find out more about sponsorship?
We have an electronic version of our sponsorship packages as well as Sarah, Matt, Taylor, or I would love to chat to you about it.
What items are you needing for silent auction?
Anything you would like to give. Jewelery, Art, Restaurants, etc.
How else can I help?
If you would like to help reach out to me & I will let you know more specific needs.
**Also, word of mouth is a huge way you can help. Share our story, share the trailer, share the ticket sale site, share this blog, share anything & that would help a HUGE HUGE way.
When can we buy a DVD if we can't make the premier?
We plan to have DVD's available by the end of June. We will give you updates as we get closer to the time. We will make sure you all have a way to see the film.
Again thank you all for the constant support & love you surround us with. Thank you for helping make this documentary a reality we couldn't have done it without you all.
Here is the trailer for the documentary. Enjoy!
So much happens in one day these days.
Well. A lot has happened good & bad the past 2 months & I am on my game enough today to finally blog. :)
So the medical side:
When Steve was in the hospital our doctors prepared us for 2 things. One was that Steve's infection in his lungs may colonize and never go away, which as y'all know has happened as of a little over a month ago. The other was that Steve would eventually no longer be able to come off the vent. That's ALS right eventually progressing so much that you have to rely on machines to survive. Steve decided early on that he doesn't want to live vent dependent for a long period as it's not the quality of life that he wants. Recently, Steve, began to need the vent more and more, and eventually it happened as he's off the vent he becomes sleepy & disorientated. For those who don't understand the vent not only breathes for you but it also helps your body clear CO2. While Steve is able to breathe on his own without the vent it is becoming obvious that his body is having difficulties with CO2. After speaking with our Respiratory team & our nurse it has become apparent that Steve will need to remain on the vent more than not. He can give his body a workout a few times a day but he will need to be primarily vent dependent. This is obviously a sad moment for us but I am grateful for several things. First of all that I have gained enough knowledge of ALS & ALS with Steve to know when something isn't right. I almost knew the answer before I called anyone to see what they thought. I'm also grateful we have this amazing vent to use & that at this moment Steve is willing to use it. He said through tears the day we decided that he wanted another Christmas with me. Now that he's been on the vent full time for a month he is getting used to it and actually has noticed some weight gain and a slight increase in energy. Needless to say there are even more cuddles & special memories happening. I am always amazed at how resilient & determined Steve is & how he is able to constantly adapt to each new challenge ALS presents.
So the medical side:
When Steve was in the hospital our doctors prepared us for 2 things. One was that Steve's infection in his lungs may colonize and never go away, which as y'all know has happened as of a little over a month ago. The other was that Steve would eventually no longer be able to come off the vent. That's ALS right eventually progressing so much that you have to rely on machines to survive. Steve decided early on that he doesn't want to live vent dependent for a long period as it's not the quality of life that he wants. Recently, Steve, began to need the vent more and more, and eventually it happened as he's off the vent he becomes sleepy & disorientated. For those who don't understand the vent not only breathes for you but it also helps your body clear CO2. While Steve is able to breathe on his own without the vent it is becoming obvious that his body is having difficulties with CO2. After speaking with our Respiratory team & our nurse it has become apparent that Steve will need to remain on the vent more than not. He can give his body a workout a few times a day but he will need to be primarily vent dependent. This is obviously a sad moment for us but I am grateful for several things. First of all that I have gained enough knowledge of ALS & ALS with Steve to know when something isn't right. I almost knew the answer before I called anyone to see what they thought. I'm also grateful we have this amazing vent to use & that at this moment Steve is willing to use it. He said through tears the day we decided that he wanted another Christmas with me. Now that he's been on the vent full time for a month he is getting used to it and actually has noticed some weight gain and a slight increase in energy. Needless to say there are even more cuddles & special memories happening. I am always amazed at how resilient & determined Steve is & how he is able to constantly adapt to each new challenge ALS presents.
Because of the antibiotics Steve is on, being on the vent full time (drys a person out more), & more activity but not an increase in fluids Steve had some extreme crystallizing in his kidneys & he got pretty dehydrated. We had to stop all antibiotics for close to two weeks and increase fluids a great deal. Steve thankfully has bounced back from that, where we are able to start him back on the antibiotics again. Thankfully because the pseudomonis is still there obviously but now the MRSA is also back. So now he will need to continue hoping the antibiotics attack the infection while being gentle on the rest of his body. Lots of love & light for that please. *thanks :)*
On the fun side:
We did a news story with channel 2 action news. check it out here.
Our dear friend Stephanie did an amazing fundraiser for us that was full of lots of love, great energy, & crazy talent! few photos
We've done several paint sessions & have made lots of new drive paintings with Jeremy & Maria.
Lots of fun visits including close friends & my sister :) & we talked about some hopeforsteve website updates :)
I know I mentioned in my latest blog about my yoga journey. A lot of exciting progress was made the past 2 months.
Oh & let's not forget it's SPRING. The weather is warming up. :)
So yes. That's why I haven't blogged & that this is short. I do have some other random thought blogs to write hopefully next week for y'all.
Once again I have to express our extreme gratitude for all the love, support, & light that you surround us with. We are blessed & feel all the love coming in. thank you thank you xo.
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.
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.
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.