Mindfully accepting.
With every new challenge ALS brings to us, it takes acceptance and adjustments. Acceptance that this is the reality now. First comes the feeding tubes, the catheters, the traches, the vents, IV food (for us), to loosing more and more mobility, to bed sores. Once you can accept the reality the adjusting seems to come a little more naturally.
Acceptance has been something that we have had to work towards. It's a hard thing to accept the realities of this disease. It's hard to accept that there's not more I can be doing, or that there's no more help I can be given from nursing stand points, or that there's no medical treatment for all these complications, or that we have another wound to address.
Sometimes trying to wrap my mind around accepting things I do no like, is a challenge for me. My warrior mentality kicks in, no way will I accept this. I don't like it. I want to change it. I will change it....
Then I get exhausted by running around with zero focus, accomplishing close to nothing; because I'm still wracking my brain on how to change the unchangeable. On moments like this, where I'm stressing the situations I cannot change, I find myself doing the mindless scroll on the phone. Basically, I'm filling my brain with other peoples lives and dreams, to avoid facing my reality; because I haven't accepted it.
*God help me to accept the things I cannot change* Yes yes....I hear you serenity prayer.
This, without meaning to play on words, is unacceptable. Here's a simple truth I realized this week, because I have been indulging in the many distractions in front of me; I've been holding myself back. I haven't worked as hard as I could, I haven't done our taxes, finished my Ayurveda class, worked on my book until yesterday. The list of things I have not made the mind space for is long, and something to add to my list of accepting.
Aside from our daily 2-3 hour wound care and re positioning and the many other minutes to hours I spend with Steve, I have been wasting my time. Accusing all kinds of other circumstances of doing so.
Of course, I'm accomplishing tasks, EVENTUALLY. I have too much to offer the world to be wasting my time on the mindless checking out. Don't get me wrong, social media is a huge part of my life; and probably always will be. We have grown to love a lot of our followers and supporters and have even made life long friendships with people we've met on social media. It's important to share our story, as it's making a large impact in the world; and it's a beautiful thing to see Steve light up as he's changing lives.
However, there's mindful social media, and mindless; and it's time I let go of the mindless. There I accept that I've not been fully practicing what I preach, I have found chunks of my day where I can't tell you what I did with it, and now I know that I'm not always living in the present.
IT IS SO EASY to check out, to do the mindless scroll, and to try to hide from the reality of the situation, however it doesn't help anything. All it has done was leave me feeling like I am not living up to my potential. I have so many ideas, creations, words, visions, etc that if I better used my time I could see come to fruition.
So here it is my public acceptance that while yes I am doing the very best for Steve in being his caregiver, the rest of my time; I've been a hot damn mess. I accept that most days I will not be able to do enough for Steve. I can't take away his pain, or stop him from having to endure so much to stay alive; but I can be there with him fully present and allow him to experience this knowing he's not alone. Then because he does enjoy alone time, I owe it to him and myself to be using it wisely.
So I'm going to be making a change. I'm not saying it will be easy and I accept that, but it will sure as hell be worth it when I can go to bed at night knowing that my day was spent in mindful activity. I want to know that I put my all into each day. Because life is too short for the mindless distractions, and I'm a damn warrior-meant to do much more with my life. So it's time I step up.
I'll still be here in the social media world, so you will still see me. I just will not be spending hours mindlessly scrolling through a feed seeing things that may or may not even serve me. It will be more dedicated to actual conversations with people who inspire me, people who support us, and hopefully it will be a place for me to continue mindful living.
Acceptance has been something that we have had to work towards. It's a hard thing to accept the realities of this disease. It's hard to accept that there's not more I can be doing, or that there's no more help I can be given from nursing stand points, or that there's no medical treatment for all these complications, or that we have another wound to address.
Sometimes trying to wrap my mind around accepting things I do no like, is a challenge for me. My warrior mentality kicks in, no way will I accept this. I don't like it. I want to change it. I will change it....
Then I get exhausted by running around with zero focus, accomplishing close to nothing; because I'm still wracking my brain on how to change the unchangeable. On moments like this, where I'm stressing the situations I cannot change, I find myself doing the mindless scroll on the phone. Basically, I'm filling my brain with other peoples lives and dreams, to avoid facing my reality; because I haven't accepted it.
*God help me to accept the things I cannot change* Yes yes....I hear you serenity prayer.
This, without meaning to play on words, is unacceptable. Here's a simple truth I realized this week, because I have been indulging in the many distractions in front of me; I've been holding myself back. I haven't worked as hard as I could, I haven't done our taxes, finished my Ayurveda class, worked on my book until yesterday. The list of things I have not made the mind space for is long, and something to add to my list of accepting.
Aside from our daily 2-3 hour wound care and re positioning and the many other minutes to hours I spend with Steve, I have been wasting my time. Accusing all kinds of other circumstances of doing so.
Of course, I'm accomplishing tasks, EVENTUALLY. I have too much to offer the world to be wasting my time on the mindless checking out. Don't get me wrong, social media is a huge part of my life; and probably always will be. We have grown to love a lot of our followers and supporters and have even made life long friendships with people we've met on social media. It's important to share our story, as it's making a large impact in the world; and it's a beautiful thing to see Steve light up as he's changing lives.
However, there's mindful social media, and mindless; and it's time I let go of the mindless. There I accept that I've not been fully practicing what I preach, I have found chunks of my day where I can't tell you what I did with it, and now I know that I'm not always living in the present.
IT IS SO EASY to check out, to do the mindless scroll, and to try to hide from the reality of the situation, however it doesn't help anything. All it has done was leave me feeling like I am not living up to my potential. I have so many ideas, creations, words, visions, etc that if I better used my time I could see come to fruition.
So here it is my public acceptance that while yes I am doing the very best for Steve in being his caregiver, the rest of my time; I've been a hot damn mess. I accept that most days I will not be able to do enough for Steve. I can't take away his pain, or stop him from having to endure so much to stay alive; but I can be there with him fully present and allow him to experience this knowing he's not alone. Then because he does enjoy alone time, I owe it to him and myself to be using it wisely.
So I'm going to be making a change. I'm not saying it will be easy and I accept that, but it will sure as hell be worth it when I can go to bed at night knowing that my day was spent in mindful activity. I want to know that I put my all into each day. Because life is too short for the mindless distractions, and I'm a damn warrior-meant to do much more with my life. So it's time I step up.
I'll still be here in the social media world, so you will still see me. I just will not be spending hours mindlessly scrolling through a feed seeing things that may or may not even serve me. It will be more dedicated to actual conversations with people who inspire me, people who support us, and hopefully it will be a place for me to continue mindful living.
Words from the flow.
Some of you really resonated with yesterdays blog, thank you for your feedback. One message, suggested, I should follow up the blog with some thoughts from the flow days.
Well, I happen to like that idea, and thankfully, I am blessed with a flow day, today. So I shall take this feedback and run with it, or shall I say flow. :)
Allowing myself the space and freedom to have days where I do have down time is only part of why I am able to have such productive, energized, monumental, inspired flow days. Those down time days, aren't spent in vein. They are spent in the garden amongst flowers, or covered in paint, or time having netflix marathons with Steve, cuddles with the pups, extra time in meditation, chatting away with social media connections, do you get my point,...?
No?
Okay well, I find nourishing and comforting things to do when I feel the need for a little extra energy. I didn't always do this. In fact Steve encouraged me to try this one day, and it's the most life changing decision I've made. I used to spend those days sleeping in, or moping around, or not doing ANYTHING when I would feel the need for rest or pause; and it would rarely refuel me. I was spinning my wheels working hard at this and that, doing what I could for Steve, and barely having the energy to do much else.
I had to have a shift. It had to be this "Okay, if I need to just sit let me do it outside with the birds, the sun, the flowers, the breeze; or let me sit on my meditation matt." or "Okay if I'm going to watch TV I'm going to do that with my best friend, who happens to spend most of his days watching TV. I don't even have a remote to our bedroom TV Steve does it with his tobii, or working cable in the living room; because if I'm going to watch TV I want it to be with Steve."
Another example if I haven't painted a clear picture, yes paint. "So I'm feeling stir crazy, instead of allowing it to turn into anxiety, I should paint." I used to pick fights with Steve because I wasn't allowing myself to really feel life, because I had zero coping skills. So instead of FEELING the stir crazy, BREATHING through it, AND finding a NOURISHING ACTIVITY to do to use that energy, I would fight with Steve. Steve thanks me for learning to live mindfully. Trust me, he's been a pro at this for a while; I believe a terminal illness definitely puts you on the expert track to mindfulness.
Steve and I have a beautiful bond and relationship now, but if you've followed us closely you will have heard both of us sharing openly the work it took us to get there. The best decisions either of us ever made was to tap inside to see what made us flow, and what helped us get back to it. What did we both enjoy so much, that we could physically could do; and will make us feel happy, inspired, and fulfilled. Individually first, together next.
It's not easy, but I promise it's worth it. I shared mine with you all, and I'm sure some may wonder what Steve's is. He loves painting days when he has the energy to get out of bed. On the vast majority of days when he's needing to rest, he will work the stock market, edit my book (his brain is astounding), chat with his buddies on facebook, and of course follow his GA bulldogs (yes all year y'all, he loves him some dawgs).
He finds joy in almost every simple moment that he isn't experiencing excruciating pain, and even then he still shows love. I tell you it's beautiful to be around. What an honor to spend my days with him.
So there you have it my friends, some words; from the flow.
The flow of life
It's interesting when you can let down your defenses when someone questions you about something, you will see how, what they really want is to understand you. They want to learn more about you, and how we perceive that determines, if we can use it as a moment to teach others more intimate sides of ourselves or not.
So recently I was asked, "Why I don't post more on Hopie Hippie?"
That simple question that I took and gave my own interpretation of, "They must think I sit at home and do nothing all day, or if she spent less time on the phone she could get things done."
Did any of the people say that when they asked me? Of course not, those are judgments I have on myself. Now of course it's obvious I don't sit around and do nothing all day taking care of an ALS patient is a full time job, but the phone thing; hey I love my social media community, I've grown a lot from them and the support is invaluable. So it's not too much time, but it is a commitment of time.
After I was able to let go of the made up drama it clicked, that it would be powerful to share with people about the way I live my days. I start my days whenever I naturally wake up, which thankfully is usually 7:30. Alarms wake Steve up and he needs his sleep, and thankfully because I don't HAVE to be up I don't use an alarm.
I immediately check social media and emails and respond to people right when it's fresh on my mind while I soak up some puppy cuddles in bed. I then do yoga and meditate before anything else, as it truly sets my day up with good energy, and me being entirely present.
That's the key to our life going well. It's not about how many malas, weavings, paintings I make and sell. Although I love creating days and put a lot of love and energy into my pieces as I love making them. The most important key to me is how mindful and present am I today.
Being entirely present and mindful in a 12 hour period is hard and it takes work. It's a constant coming back to the moment, but days where I learn to follow the natural flows of life, are the days where I am able to be the most aware. I'm a better caregiver, writer, creator, and all around person when I slow down the "I have to get this list of things done by this time" thinking and come back to, whatever I'm doing that day I really want to be there. If I'm sitting outside and starring off into the sky, I'm going to be present and enjoy it. Not feel guilty.
This means some days I spend my whole day with Steve because he really needs me to, or on good days when he's kicking me out to watch his sports, I go with what I'm really feeling and drawn to. Intuitively I will walk over and pick up my journal and just start writing for hours on days when I have to work through life with words. Some days I'll find myself walking aimlessly through the garden not really able to find the pull to do anything else, and then I'll have a garden day and really soak up that energy from momma earth to refill. There are days where I'm pulled to weaving and malas and painting, so much, and there are days where I find myself lost and blissful; and those are great days.
However, the forcing life or creativity, just doesn't work for me. Because I pour so much of myself into everything I do from taking care of Steve, to making our environment inspiring and interesting for us to spend our days in, to taking care of the pups and the garden, to every creation I make; I listen to myself and flow with life. When I go against it, life shows me. I'll fight with Steve because he's interrupting me while "I'm working" (I mean really), i'll make a mala and it's so half-assed it breaks (what's the point in that), I write crappy writing, or create something really uninspired and unoriginal.
My way of living may not meet society's standards as to how one should consider oneself successful or not; and that's okay. It's what works best for Steve and my life right this moment. If you ask Steve, he can attest to my kindness and patience levels increasing as I allow myself just to experience life rather than constantly chase some number. Trust me I'm still creating magic, and making my print on the world; I'm just not loosing myself and the ground I'm standing on in the process. My life (and Steve) thank me for it.
So recently I was asked, "Why I don't post more on Hopie Hippie?"
That simple question that I took and gave my own interpretation of, "They must think I sit at home and do nothing all day, or if she spent less time on the phone she could get things done."
Did any of the people say that when they asked me? Of course not, those are judgments I have on myself. Now of course it's obvious I don't sit around and do nothing all day taking care of an ALS patient is a full time job, but the phone thing; hey I love my social media community, I've grown a lot from them and the support is invaluable. So it's not too much time, but it is a commitment of time.
After I was able to let go of the made up drama it clicked, that it would be powerful to share with people about the way I live my days. I start my days whenever I naturally wake up, which thankfully is usually 7:30. Alarms wake Steve up and he needs his sleep, and thankfully because I don't HAVE to be up I don't use an alarm.
I immediately check social media and emails and respond to people right when it's fresh on my mind while I soak up some puppy cuddles in bed. I then do yoga and meditate before anything else, as it truly sets my day up with good energy, and me being entirely present.
That's the key to our life going well. It's not about how many malas, weavings, paintings I make and sell. Although I love creating days and put a lot of love and energy into my pieces as I love making them. The most important key to me is how mindful and present am I today.
Being entirely present and mindful in a 12 hour period is hard and it takes work. It's a constant coming back to the moment, but days where I learn to follow the natural flows of life, are the days where I am able to be the most aware. I'm a better caregiver, writer, creator, and all around person when I slow down the "I have to get this list of things done by this time" thinking and come back to, whatever I'm doing that day I really want to be there. If I'm sitting outside and starring off into the sky, I'm going to be present and enjoy it. Not feel guilty.
This means some days I spend my whole day with Steve because he really needs me to, or on good days when he's kicking me out to watch his sports, I go with what I'm really feeling and drawn to. Intuitively I will walk over and pick up my journal and just start writing for hours on days when I have to work through life with words. Some days I'll find myself walking aimlessly through the garden not really able to find the pull to do anything else, and then I'll have a garden day and really soak up that energy from momma earth to refill. There are days where I'm pulled to weaving and malas and painting, so much, and there are days where I find myself lost and blissful; and those are great days.
However, the forcing life or creativity, just doesn't work for me. Because I pour so much of myself into everything I do from taking care of Steve, to making our environment inspiring and interesting for us to spend our days in, to taking care of the pups and the garden, to every creation I make; I listen to myself and flow with life. When I go against it, life shows me. I'll fight with Steve because he's interrupting me while "I'm working" (I mean really), i'll make a mala and it's so half-assed it breaks (what's the point in that), I write crappy writing, or create something really uninspired and unoriginal.
My way of living may not meet society's standards as to how one should consider oneself successful or not; and that's okay. It's what works best for Steve and my life right this moment. If you ask Steve, he can attest to my kindness and patience levels increasing as I allow myself just to experience life rather than constantly chase some number. Trust me I'm still creating magic, and making my print on the world; I'm just not loosing myself and the ground I'm standing on in the process. My life (and Steve) thank me for it.
the okay-ness of nothingness
As I sit here starring at a blank blog page, I think, "I have nothing to write about." Mind you I have a journal with about 20 blogs written as ramblings that just don't seem appropriate for the day.
The thought of following up the blog I wrote Saturday about the documentary is daunting and leaving my mind at a blank. If you know me, a blank mind is more unsettling for me than a racing mind. I've learned to deal with the racing ideas and thoughts, and how to categorize, and sort through them. The nothingness is too vast.
Getting up early to get back on track with yoga and meditating and blogging, and starring at a blank screen with lots of puppy distractions, listening to the pond going and the birds chirping, watching the squirrels bravely climb limb to limb to the bird feeders, watching the trees dance in the wind, and feeling the brisk morning air; it dawned on me.
Nothingness is okay. I'm peaceful right now. I accept this moment; this vast empty space right now. After all that's what meditation is to be teaching me right? To slow down the thoughts to create the space. Knowing the space will soon be taken up by Monday routines between bath time for Steve, and dressing changes, and our weekly nurse visits. I will sit here and appreciate the nothingness.
Because these moments are fleeting and they aren't sent to create panic, they are sent as refreshers. So often we miss the cue. We get flustered by the lack of ideas and momentum that we forget to embrace the silence. Embrace the nothingness. Allow it to be the refresher you need.
So today I'm taking note. I will sit in the silence until it's time for Steve's bath, and I will soak up every bit of the refuel that life is offering me in this moment. Hopefully by sharing, others can experience the beauty that nothingness brings as well.
The thought of following up the blog I wrote Saturday about the documentary is daunting and leaving my mind at a blank. If you know me, a blank mind is more unsettling for me than a racing mind. I've learned to deal with the racing ideas and thoughts, and how to categorize, and sort through them. The nothingness is too vast.
Getting up early to get back on track with yoga and meditating and blogging, and starring at a blank screen with lots of puppy distractions, listening to the pond going and the birds chirping, watching the squirrels bravely climb limb to limb to the bird feeders, watching the trees dance in the wind, and feeling the brisk morning air; it dawned on me.
Nothingness is okay. I'm peaceful right now. I accept this moment; this vast empty space right now. After all that's what meditation is to be teaching me right? To slow down the thoughts to create the space. Knowing the space will soon be taken up by Monday routines between bath time for Steve, and dressing changes, and our weekly nurse visits. I will sit here and appreciate the nothingness.
Because these moments are fleeting and they aren't sent to create panic, they are sent as refreshers. So often we miss the cue. We get flustered by the lack of ideas and momentum that we forget to embrace the silence. Embrace the nothingness. Allow it to be the refresher you need.
So today I'm taking note. I will sit in the silence until it's time for Steve's bath, and I will soak up every bit of the refuel that life is offering me in this moment. Hopefully by sharing, others can experience the beauty that nothingness brings as well.
documentary feels
So I know I've gotten a lot of feedback on how surprised y'all have been that I haven't blogged and it was documentary release week!
First I'll tell you why.
So we have been looking forward to the documentary to be released for the world to see since we started making it. It's our first project Steve and I worked on together that sparked a lot of other incredible, deeply meaningful projects. It became more and more as we continued to work together. We both had so much energy into the release and the social media push and trying to stay in the moment and really enjoy it. We couldn't do anything else. Literally the day before, the release day, and the day after. It was wonderful and lovely and peaceful and heart bursting. Finally we are regaining some energies and able to do other things aside from taking care of Steve and documentary.
People who don't see our lives, may not realize the mental energy of taking care of someone is often what drains us, before the physical energy it takes. I literally put my every ounce of energy and love flowing into Steve; even when I'm out of the room we are connected. Unless you've seen it, you don't know that I'm constantly plugged in; and that's why it's so vital for me to take time to play in the yard, paint, journal, day dream, meditate, etc. I need to stay fueled to keep Steve going. So to those of you that have been thinking, "Where's her blog?" "Why doesn't she create more Hopie Hippie creations?" .......now you know.
I intentionally don't pile too much on my plate, I do what I can and follow the ebs and flows of life. When I'm energized it I give thanks and use it all up and when I need to rest and reset, I do.
...................................................................
People may not realize Steve & I got married after 6 months, until you watch the documentary. That bond you see Steve and I have today, this documentary documents the beginning and progression of it. The ability to sort of know what he needs before he tells me, that wasn't just there. It had to grow. You see the early clips of Steve and I just married, newly diagnosed, and newly sharing our journey. I look at those 2 and I don't recognize them. That's how much we've grown since then. It was beautiful to watch the film again with Steve on Tuesday. Because we could see how much we've gone through and celebrate that despite all of it, we are closer today than ever.
The fighting scene didn't make me cringe this time watching it, because the idea of fighting is different in my mind than it was back then. A fight doesn't mean you don't love that person. Fighting means you love them so much you have to say something. You know that you can express your true, real life emotions and it's okay. Fighting isn't unhealthy. It's process. Shoot, Steve and I still fight. I was being honest when I said in the documentary the caregiver/wife balance is a struggle. I have to work at it daily. Through each fight though Steve and I grow because we are both not only showing each other what's bothering us we are truly showing ourselves.
The documentary still made me feel all the emotions as they do most; the tears, laughter, hope, anger, faith, inspiration. Yes it's our story and I've watched this film probably 100 times, but honestly Steve amazes me so so so much daily. Watching him amaze me at every step of the process as much as he does now, was a poignant reminder of how precious life is. A reminder of how thankful I am for every single thing in my life. As Steve progressed and continued to loose more of his freedom to ALS he grew in light. He accepted it with a grace and peace that transforms everyone's life that it touches. I am an obvious example of this.
I had so many thoughts going through my head watching the film again, as I do with everything in life and I wanted to share some of the poignant, funny, & maybe not so obvious ones:
"Steve's beard changed as frequent as my hair did."
"Thank goodness I actually decorated our house."
"I miss Steve's voice."
"We did such a good capturing his voice going and the stages."
"Steve on that beach...<3<3 those are heart eyes."
"Pebble beach Steve=awakened."
"You can ACTUALLY see Steve giving me purpose on the screen."
"Singing Steve was my favorite, always singing me a song."
"Ahh Wanee, dancing with Franti; everything about that day was awesome. Coolest day ever."
"Sorry all my ex boyfriends. FYI mostly everyone meant the Atlanta ones. Oh and to all of you, thanks for being assholes. Truly how would I have known we weren't meant to be together and find Steve other wise. :) Real talk."
"That ending. I remember this day. The last few months of Steve's voice. Such high emotions and there's Steve being beautiful and caring more about others having to experience this and not him...ahh Gets me every time. What a beautiful man."
Haven't watched:
iTUNES:
http://apple.co/1S8n4VX
AMAZON:
http://amzn.to/1qJGwk
First I'll tell you why.
So we have been looking forward to the documentary to be released for the world to see since we started making it. It's our first project Steve and I worked on together that sparked a lot of other incredible, deeply meaningful projects. It became more and more as we continued to work together. We both had so much energy into the release and the social media push and trying to stay in the moment and really enjoy it. We couldn't do anything else. Literally the day before, the release day, and the day after. It was wonderful and lovely and peaceful and heart bursting. Finally we are regaining some energies and able to do other things aside from taking care of Steve and documentary.
People who don't see our lives, may not realize the mental energy of taking care of someone is often what drains us, before the physical energy it takes. I literally put my every ounce of energy and love flowing into Steve; even when I'm out of the room we are connected. Unless you've seen it, you don't know that I'm constantly plugged in; and that's why it's so vital for me to take time to play in the yard, paint, journal, day dream, meditate, etc. I need to stay fueled to keep Steve going. So to those of you that have been thinking, "Where's her blog?" "Why doesn't she create more Hopie Hippie creations?" .......now you know.
I intentionally don't pile too much on my plate, I do what I can and follow the ebs and flows of life. When I'm energized it I give thanks and use it all up and when I need to rest and reset, I do.
...................................................................
People may not realize Steve & I got married after 6 months, until you watch the documentary. That bond you see Steve and I have today, this documentary documents the beginning and progression of it. The ability to sort of know what he needs before he tells me, that wasn't just there. It had to grow. You see the early clips of Steve and I just married, newly diagnosed, and newly sharing our journey. I look at those 2 and I don't recognize them. That's how much we've grown since then. It was beautiful to watch the film again with Steve on Tuesday. Because we could see how much we've gone through and celebrate that despite all of it, we are closer today than ever.
The fighting scene didn't make me cringe this time watching it, because the idea of fighting is different in my mind than it was back then. A fight doesn't mean you don't love that person. Fighting means you love them so much you have to say something. You know that you can express your true, real life emotions and it's okay. Fighting isn't unhealthy. It's process. Shoot, Steve and I still fight. I was being honest when I said in the documentary the caregiver/wife balance is a struggle. I have to work at it daily. Through each fight though Steve and I grow because we are both not only showing each other what's bothering us we are truly showing ourselves.
The documentary still made me feel all the emotions as they do most; the tears, laughter, hope, anger, faith, inspiration. Yes it's our story and I've watched this film probably 100 times, but honestly Steve amazes me so so so much daily. Watching him amaze me at every step of the process as much as he does now, was a poignant reminder of how precious life is. A reminder of how thankful I am for every single thing in my life. As Steve progressed and continued to loose more of his freedom to ALS he grew in light. He accepted it with a grace and peace that transforms everyone's life that it touches. I am an obvious example of this.
I had so many thoughts going through my head watching the film again, as I do with everything in life and I wanted to share some of the poignant, funny, & maybe not so obvious ones:
"Steve's beard changed as frequent as my hair did."
"Thank goodness I actually decorated our house."
"I miss Steve's voice."
"We did such a good capturing his voice going and the stages."
"Steve on that beach...<3<3 those are heart eyes."
"Pebble beach Steve=awakened."
"You can ACTUALLY see Steve giving me purpose on the screen."
"Singing Steve was my favorite, always singing me a song."
"Ahh Wanee, dancing with Franti; everything about that day was awesome. Coolest day ever."
"Sorry all my ex boyfriends. FYI mostly everyone meant the Atlanta ones. Oh and to all of you, thanks for being assholes. Truly how would I have known we weren't meant to be together and find Steve other wise. :) Real talk."
"That ending. I remember this day. The last few months of Steve's voice. Such high emotions and there's Steve being beautiful and caring more about others having to experience this and not him...ahh Gets me every time. What a beautiful man."
Haven't watched:
iTUNES:
http://apple.co/1S8n4VX
AMAZON:
http://amzn.to/1qJGwk
If you have supported us in this journey in every single way....thank you!!!!! You all have made this possible, it was a beautiful experience for Steve and I to see this get to this point together. There's been so many scares ALS has given us with Steve's health, and here he was healthy and in our magical home for this day. So thankful.
We have a few things coming for you this next week. Stay tuned. ;)
The teeter totter of life...
Yesterdays blog rattled a few people, and if I'm honest it rattled me to write it. So how does one follow up such a raw blog...
By coming back to the present. The now. It's coming back to the fact that for now Steve is alive and fighting; and while he's here, we have work to do. :)
Obviously all of our futures are unknown, and ALS and it's nasty little curve balls are in the abyss of the unknown; it's a poignant reminder that all we have is this moment. I plan to make the most of every single moment I'm given.
In life it's a balance of preparing for the future while staying present in the moment. This moment is scattered with things that happened in the past as well as things that have yet to happen. The reality of the future and the possibilities are there, but what's important is not letting them swallow the actual moment.
As a kid I used to try to walk the teeter totter like a balance beam and when I would have it where I was in the middle and both sides were up and still; is that balance I'm looking for in life. Where you know at some point this is going to happen, because all this happened in the past; but you're so present that this very moment feels magical and it's all you focus on.
That's my ultimate goal in life, which isn't always easy. Because sometimes the past or future are so huge they overshadow the now. Coming back from say the conversations I've had with Steve, about me having to realize that at some point yes he will be done, to then us truly living in the now; takes work.
So how do we do it? To be honest that's when we reset with a meditation and a dance party. Yep both. After we shake off the harsh realities of ALS, it's not that we go into denial; it's that we learn to live fuller lives because of the facts. We cherish every single day as we all should (totally quoting Steve from our documentary, which have I mentioned comes out May 3 :)). It makes the moments much sweeter.
So while yes I am constantly working to be strong enough to stand by Steve's every single choice he makes. RIGHT NOW I am going to soak up every single minute of his energy, of his love, of his inspiration, his wisdom, his beautiful mind; because this moment, today; he's choosing life---and for that I'm thankful. That's all that matters right now. Is the now.
So for everyday I get I will count my blessings and soak it all up like a sponge, I will stand beside him whether I'm ready or not for the future, and I will still hold on to that hope; because it's all I can do.
By coming back to the present. The now. It's coming back to the fact that for now Steve is alive and fighting; and while he's here, we have work to do. :)
Obviously all of our futures are unknown, and ALS and it's nasty little curve balls are in the abyss of the unknown; it's a poignant reminder that all we have is this moment. I plan to make the most of every single moment I'm given.
In life it's a balance of preparing for the future while staying present in the moment. This moment is scattered with things that happened in the past as well as things that have yet to happen. The reality of the future and the possibilities are there, but what's important is not letting them swallow the actual moment.
As a kid I used to try to walk the teeter totter like a balance beam and when I would have it where I was in the middle and both sides were up and still; is that balance I'm looking for in life. Where you know at some point this is going to happen, because all this happened in the past; but you're so present that this very moment feels magical and it's all you focus on.
That's my ultimate goal in life, which isn't always easy. Because sometimes the past or future are so huge they overshadow the now. Coming back from say the conversations I've had with Steve, about me having to realize that at some point yes he will be done, to then us truly living in the now; takes work.
So how do we do it? To be honest that's when we reset with a meditation and a dance party. Yep both. After we shake off the harsh realities of ALS, it's not that we go into denial; it's that we learn to live fuller lives because of the facts. We cherish every single day as we all should (totally quoting Steve from our documentary, which have I mentioned comes out May 3 :)). It makes the moments much sweeter.
So while yes I am constantly working to be strong enough to stand by Steve's every single choice he makes. RIGHT NOW I am going to soak up every single minute of his energy, of his love, of his inspiration, his wisdom, his beautiful mind; because this moment, today; he's choosing life---and for that I'm thankful. That's all that matters right now. Is the now.
So for everyday I get I will count my blessings and soak it all up like a sponge, I will stand beside him whether I'm ready or not for the future, and I will still hold on to that hope; because it's all I can do.