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Hey God, it's me again. Hope.
When Steve was first showing signs of progression with ALS, was when I really had to learn it's okay to ask for help. I was drowning in being a newly wed, new caregiver, trying to work, and the new realities of ALS. It was all hitting us at once, and I realized quickly I couldn't do it all.
The idea of me not being able to do it all, made me feel not good enough. Thankfully our beautiful friends had a "come to Jesus" chat with me and sat me down. Through tears I listened to them talk about how capable I was but how it was okay to need help. How them helping was a blessing to them and not a burden. They opened my eyes to when people ask, "How can I help?" They really want to help. It's not just a blessing to me, but to them as well.
I've grown a bit more accustomed to accepting that just because I need help doesn't mean I'm failing at anything, in fact it's a strength to realize and be able to accept help with grace.
However, I've become so used to needing help in some areas, that I've become so stubborn against asking for help in others.
For instance with God. God's pulled some epic miracles with Steve, as the complications of life with ALS has tried to take him from me so many times. God's been amazing at using Steve for making people like me have faith again. However, I found myself not feeling comfortable to ask him for anything else.
Why would I ask God to help me handle stress better? I mean I should just freaking handle it, and I began living life like it was my job to HANDLE everything about me without asking for help from God or anyone else. I need so much help with Steve and our aging house these days that anything else seems excessive.
Recently I began praying again. Not really something I would do unless it was for Steve or another family member, or if my mom was doing her "Let's pray," that she so frequently does. I began praying for energy to do all that I intend/hope to do. I began asking for focus, and strength, and patience.
To my surprise the already busy miracle making God, did have time for me. After I ask, the answers almost always show up. From a book recommendation from a friend that same afternoon, to a quote I read when I first open my instagram. It's amazing when opening yourself up to help, how you find yourself growing.
So today I'm here to remind you---it's okay to ask for help. Whether it be a friend or God. In fact it's more than okay. It's life changing.
xo.
The idea of me not being able to do it all, made me feel not good enough. Thankfully our beautiful friends had a "come to Jesus" chat with me and sat me down. Through tears I listened to them talk about how capable I was but how it was okay to need help. How them helping was a blessing to them and not a burden. They opened my eyes to when people ask, "How can I help?" They really want to help. It's not just a blessing to me, but to them as well.
I've grown a bit more accustomed to accepting that just because I need help doesn't mean I'm failing at anything, in fact it's a strength to realize and be able to accept help with grace.
However, I've become so used to needing help in some areas, that I've become so stubborn against asking for help in others.
For instance with God. God's pulled some epic miracles with Steve, as the complications of life with ALS has tried to take him from me so many times. God's been amazing at using Steve for making people like me have faith again. However, I found myself not feeling comfortable to ask him for anything else.
Why would I ask God to help me handle stress better? I mean I should just freaking handle it, and I began living life like it was my job to HANDLE everything about me without asking for help from God or anyone else. I need so much help with Steve and our aging house these days that anything else seems excessive.
Recently I began praying again. Not really something I would do unless it was for Steve or another family member, or if my mom was doing her "Let's pray," that she so frequently does. I began praying for energy to do all that I intend/hope to do. I began asking for focus, and strength, and patience.
To my surprise the already busy miracle making God, did have time for me. After I ask, the answers almost always show up. From a book recommendation from a friend that same afternoon, to a quote I read when I first open my instagram. It's amazing when opening yourself up to help, how you find yourself growing.
So today I'm here to remind you---it's okay to ask for help. Whether it be a friend or God. In fact it's more than okay. It's life changing.
xo.
Silence the inner chatter
A typical day in my mind goes something like this, as I'm rolling out the yoga mat, "I should do yoga twice a day, at least start meditating 3 times a day...Wonder how tight my hamstrings are today." Pause breathe let it go. I make it through the practice with only 3 interruptions from the puppies where I totally give in and let them love on me.
Time to meditate. Some days I'm in the zen, other days my mind has lots of noise "Okay so I have to wash Steve's pads today before his bath, and remember this time to put it in the dryer, I have to package those malas I was supposed to mail out last week, I have to start our taxes..." Bell rings as a reminder to come back to the present moment, I shake my head like I'm shaking the thoughts out of my mind, like I would with water in my hair. Deep breath, and, "Don't forget you need to take your test, oh and that chapter in the book still needs work...wonder what I will blog about..." Shaking my head again I sigh as the bell rings.
Burning sage I take a big inhale to clear the cobwebs which is interrupted by the phone ringing, talking to the pharmacy, "Why does Steve still have this lung infection?" "What new tincture can I try?" I wonder how my herbs are doing?" "Oh I better go water my plants."
Off to water the plants, as I'm halfway done telling them my "I love yous...."
Interrupted by Steve's alarm, that sounds much like a car, As I'm walking back to his room, "Oh I need to figure out why the VW won't start. Why have a car that just sits in the driveway?" Steve's up time to do his morning routine. Suction, breathing treatment, trache care, brush teeth, wash face, "what am I forgetting?" "How do I still forget things, I've been doing this how long?" Oh yeah, empty pee, wash areas of skin that need washed daily, meds, rearrange arms after a nights sleep...Steve types, "Don't forget to call comcast about the TV out there, and follow up with the rat guy, and call pharmacy for refill, and find out where tax forms all are, you're running out of time."
I walk out of the room, and suddenly I used up all my brain space, I know I have a list of 100 things to do but now there is too much chatter for me to be even able to focus on any task. I'm ready for sleep and it's only 11 o'clock.
Does this sound familiar?
This is a challenge, I'm sure many others face daily. The inner chatter has left me exhausted, overwhelmed, and unable to focus. What now? How am I supposed to accomplish anything?
Let me preface this with, I AM STILL practicing this. I in no way have control of my mind 100% of the time, but I'm making progress.
How you ask?
When the chatter becomes overwhelming I stop everything. I grab my trusty journal and write it all out. The mundane tasks, the dreams, ideas, etc. As I stop and sit and write it out, slowly the chatter of to do's turn into beautiful ideas, and inspirations.
I then close my eyes and take 5 minutes to sit and breathe and to clear space for all I have to accomplish. I then look at what I wrote down and prioritize. What MUST get done today. Okay I circle things, and then include a few what extra would I like to accomplish, and circle them. I then go at it one thing at a time. I have a mantra, Do what you can, and really do it, be there, and let the rest go.
Most importantly, I practice to only be working on that task. Not to be thinking of the 15 other things I circled for that day. I often say, "It's there in that journal to remember for me, I don't need to use this brain space right now," and come back to whatever it is I'm doing.
It's a practice and some days I do so well at clearing the inner chatter, I celebrate the control I have on my mind. The next day I'm eating humble pie and reminded that I still have work to do.
As you practice removing the inner chatter, much like practicing yoga, you see your mind stretch. You find it easier to come back to the task (as long as you don't let the negative self talk derail you). If you're like me where your mind is constantly going 100% of the time, try to have moments where you come in silence and work it out. Don't be hard on yourself, and keep practicing. Because in the end, it's our practice that shapes our life.
vulnerability
It takes a certain vulnerability to share your lives with others. You are putting your inner most thoughts, and personal events out there for people to see; and you don't always know how people will receive it.
I used to cringe when feeling vulnerable, when someone would ask me a personal question, or even sharing struggles with friends; let alone the internet world. I wish I had a recipe for teaching people how to accept the vulnerable moments in their lives, because once I did things shifted for me in amazing ways.
Opening yourself doesn't just allow room for negative responses, which yes may happen, it opens you up to some of the most positive experiences you will ever have. Your friendships will deepen because they know they are getting the real you. People will relate to you, because they too have these same feelings!
When Steve & I first made the decision on sharing our lives, I used to feel pressured to always say or do the right thing. It was overwhelming and would lead me hiding in a corner and not wanting to share our lives. Even still some days I'm overwhelmed and take breaks from it; which is okay. Because taking breaks is allowing me to be in tuned to my needs.
However, since sharing our thoughts and feelings and including everyone on the good and bad, people then felt like they could relate to us more, and the connections with our followers deepened. Some days I sit uninspired and lay around having movie days with Steve, and some days I say the wrong thing, some days I can't do anything right. It's all okay and I feel better with sharing the vulnerable moments, because I want everyone to know that these moments will happen; then you get through them and feel more inspired on the other side.
So today as I share a vulnerable thought with you all, I hope it helps you find comfort in your moments.
Steve has gotten to where he no longer feels comfortable leaving the house. Which, is totally okay and his choice. It's a beautiful thing we have such a cozy home full of lots of magic and a place he feels safe. I however, find myself feeling like I've failed him. If maybe I had done more stretches it wouldn't be so painful to move, maybe if I could finally tune into where/when his anxiety is triggered I could stop it, etc.
My mind is a beautiful place full of lots of ideas that have blossomed into beautiful things, but it's also full of the I'm not good enough's. That (I've shared before) I am working on.
So today I am thankful for the beautiful friendships we have developed and their understanding of our situation. I'm thankful that I feel okay being vulnerable and I know the not good enough feelings will pass. I know that Steve and I will continue to make the most of our days and we are blessed to have so many people to help us in that!
So with vulnerability I've opened myself up. What can you experience if you allow it?
Spring
Like nature, winter slowly forced me to hibernate and rest. It forced me indoors and to slow down. It forced me to dig deep for warmth and light. Like nature, winter helps me shed off a few layers that needed to die.
Then comes spring! Where every bloom reawakens another piece in my soul, that was hidden for the cold long months. It restores hope and vibrancy. Suddenly, I feel full of energy much like a bloom opening up to the sun. I feel the earths energy flowing in me and giving me what I need.
Spring is a great time to allow what is buried deep inside blossom! We all have seeds, that just need a little sunshine (light) shining on them and a little love.
What will you let bloom this spring? New project ideas, or picking up ones you set down for the winter? Allow the colors popping out of the ground and dancing in the winds inspire you.
Take sometime today to plan how you want to bloom this spring!
How do I want to?
In many ways. Like the hundreds of different flowers that fill my eyes with joy, so does the hundreds of ideas growing inside of me. One is to become more committed to my passions. Do more: yoga, meditating, studying, Ayurveda, Herbs, weaving, creating, painting, writing. To let the seeds to blossom even grander than I could imagine! Then open myself up to what else is to come. I'll be spending an hour this afternoon in the flowers allowing the ideas to pop up!
Nature is a powerful force, displaying her strengths all around-as are you. It's time to bloom!
Hashtag I am here FOR Steve.
At some point in our lives we will all learn the inevitability of disappointment. It will happen to you. It happens to everyone. Plans fall through, accidents, illness, etc.
I had a teacher in undergrad, who used to say, "You can tell a lot about a person by the way they handle lives disappointing moments." It sounds like a weird thing to be thankful for, but I'm thankful I learned that disappointments WILL happen early on, and my mother always helped us learn to turn that disappointment into something good.
Because life with ALS, disappointments come a little more frequent, so we are turning our today's disappointment into something good, and we need y'alls participation. :)
So if you know Steve and I at all, you know we used to enjoy being out and about in many ways. Some of our favorites were of course live music in all forms, sporting events (that was totally for Steve ;)), Steve's art shows, events thrown by our amazing friends, the river, traveling, etc. We just loved being around others and in the hustle and bustle.
Our outings have obviously decreased as Steve's progressed to currently we haven't been out of the house together except to go to the hospital. Steve has an art show tonight at ABV gallery, 7-11 where you can see all his incredible paintings on display. Steve's art shows in the past have been some of my favorite outings. I would love to see the joy on Steve's face as he watched people be moved by art he created with his wheels, and how inspired everyone was by Steve's drive to make beauty out of adversity.
We have been looking forward to going, until we realized we aren't. Steve's had a cough the past week, much like he gets every change of season. Unfortunately he was up coughing last night, so much that he had a full blown panic attack. Needless to say, a night of no sleep and that kind of trauma on the body has left him feeling not well enough to go.
So in an effort to take a disappointing situation and turn it into a good one, I am asking that everyone who goes tonight; take a picture and when you share it include hashtag #IamhereFORSteve as you are all there for him, since he can't be.
Why stop there, if you are ever at a concert, festival, at the beach, sporting event (especially UGA), traveling, etc; and you think of Steve, take a photo and use the hashtag. I know him feeling like he is at all these places with you, helps him.
So today I will be making our day at home together special, we will be skyping with everyone at the show, and we will be following on social media the hashtag, so we will be there with you!
Even in life's disappointments there's still beauty. In this case it's that technology can help us feel connected to those supporting us. <3
#IamhereFORSteve
xo
I had a teacher in undergrad, who used to say, "You can tell a lot about a person by the way they handle lives disappointing moments." It sounds like a weird thing to be thankful for, but I'm thankful I learned that disappointments WILL happen early on, and my mother always helped us learn to turn that disappointment into something good.
Because life with ALS, disappointments come a little more frequent, so we are turning our today's disappointment into something good, and we need y'alls participation. :)
So if you know Steve and I at all, you know we used to enjoy being out and about in many ways. Some of our favorites were of course live music in all forms, sporting events (that was totally for Steve ;)), Steve's art shows, events thrown by our amazing friends, the river, traveling, etc. We just loved being around others and in the hustle and bustle.
Our outings have obviously decreased as Steve's progressed to currently we haven't been out of the house together except to go to the hospital. Steve has an art show tonight at ABV gallery, 7-11 where you can see all his incredible paintings on display. Steve's art shows in the past have been some of my favorite outings. I would love to see the joy on Steve's face as he watched people be moved by art he created with his wheels, and how inspired everyone was by Steve's drive to make beauty out of adversity.
We have been looking forward to going, until we realized we aren't. Steve's had a cough the past week, much like he gets every change of season. Unfortunately he was up coughing last night, so much that he had a full blown panic attack. Needless to say, a night of no sleep and that kind of trauma on the body has left him feeling not well enough to go.
So in an effort to take a disappointing situation and turn it into a good one, I am asking that everyone who goes tonight; take a picture and when you share it include hashtag #IamhereFORSteve as you are all there for him, since he can't be.
Why stop there, if you are ever at a concert, festival, at the beach, sporting event (especially UGA), traveling, etc; and you think of Steve, take a photo and use the hashtag. I know him feeling like he is at all these places with you, helps him.
So today I will be making our day at home together special, we will be skyping with everyone at the show, and we will be following on social media the hashtag, so we will be there with you!
Even in life's disappointments there's still beauty. In this case it's that technology can help us feel connected to those supporting us. <3
#IamhereFORSteve
xo
Are you really that positive Hope?
I get asked a lot from those on the social media world, "Are you really that positive Hope?"
The answer is mostly yes. You see, I like everyone else, experience a wide ray of emotions through my days. I experience the angers and frustrations life offers, and yes I feel sadness often. I acknowledge all emotions because how can you move past them without acknowledging them.
However, I don't set up camp there, and this is important. I noticed about 3 years ago, that when I was feeling weighed down from the burdens that come with ALS, and sitting for long periods in the frustrations or sadness Steve would get sick. The more aware I became of my emotions the more I could see the direct effects it would have on Steve.
So, I decided that in order to be the best caregiver I can for Steve, I was going to find ways to stop setting up camp in the negative. It was hard, and if you knew us you saw the struggle. This was before Steve & I shared everything openly on social media, so if you were following us from the outside you may not have seen the struggle.
It was there, and then I found yoga. It not only helped me to become more present of the moment and to actually face what our days had, it helped me become more accepting. I would be in total denial of Steve's progression of ALS, as would he; and yoga helped me get a reality check while also providing me skills to deal with the reality.
People my whole life have told me, that I have a gift of finding the good in the bad, and it sort of amplified after I started implementing a practice into my daily life. Now it's how I end my day. I recognize the hard to face realities, feel those emotions for a minute, and then search for the good in it. Truth be told, 100% of the time I find it. It's always there, it just takes a different perspective.
Learning to find more good in our situation, also opened me up to more good in myself. I didn't think I had any talents, until I just started to paint for a release, and then slowly my soul opened up to creating in all realms.
Today it's true, on days where I'm off, because yet again, I'm human and I have them; Steve has bad days too. Knowing this connection we have keeps me very mindful of choosing the positive. Because I chose this life with Steve, I choose to make it the best I can. I can't change ALS or the toll it has taken (and will continue to do so) on Steve's body, but I can choose how we live our lives.
So, I choose positive. It's not always easy, but on days that are really hard, and Steve's looking to me out of eyes full of tears for that hope; it's worth it. To be able to provide Steve with that extra boost to fight this disease. It's always worth it.
The answer is mostly yes. You see, I like everyone else, experience a wide ray of emotions through my days. I experience the angers and frustrations life offers, and yes I feel sadness often. I acknowledge all emotions because how can you move past them without acknowledging them.
However, I don't set up camp there, and this is important. I noticed about 3 years ago, that when I was feeling weighed down from the burdens that come with ALS, and sitting for long periods in the frustrations or sadness Steve would get sick. The more aware I became of my emotions the more I could see the direct effects it would have on Steve.
So, I decided that in order to be the best caregiver I can for Steve, I was going to find ways to stop setting up camp in the negative. It was hard, and if you knew us you saw the struggle. This was before Steve & I shared everything openly on social media, so if you were following us from the outside you may not have seen the struggle.
It was there, and then I found yoga. It not only helped me to become more present of the moment and to actually face what our days had, it helped me become more accepting. I would be in total denial of Steve's progression of ALS, as would he; and yoga helped me get a reality check while also providing me skills to deal with the reality.
People my whole life have told me, that I have a gift of finding the good in the bad, and it sort of amplified after I started implementing a practice into my daily life. Now it's how I end my day. I recognize the hard to face realities, feel those emotions for a minute, and then search for the good in it. Truth be told, 100% of the time I find it. It's always there, it just takes a different perspective.
Learning to find more good in our situation, also opened me up to more good in myself. I didn't think I had any talents, until I just started to paint for a release, and then slowly my soul opened up to creating in all realms.
Today it's true, on days where I'm off, because yet again, I'm human and I have them; Steve has bad days too. Knowing this connection we have keeps me very mindful of choosing the positive. Because I chose this life with Steve, I choose to make it the best I can. I can't change ALS or the toll it has taken (and will continue to do so) on Steve's body, but I can choose how we live our lives.
So, I choose positive. It's not always easy, but on days that are really hard, and Steve's looking to me out of eyes full of tears for that hope; it's worth it. To be able to provide Steve with that extra boost to fight this disease. It's always worth it.