Hope Dezember 10/10/16 Hope Dezember 10/10/16

The morning of a hospital trip

While everyone was up watching the debate, I was pacing back and forth between suctioning & failing at comforting Steve; and maybe some screaming and crying a few times too.

It was a rough night and after I write this, I'll be packing for a trip to Emory Johns Creek.

I don't know what it is, but I break down in these moments; as Steve's desperately looking to me for comfort. I have nothing.

Sure I have the, "You're okay," or the, "Close your eyes and let the meds kick in."

Really what does that help?

I'll tell you, it helps nothing.

The look he's giving me as he's breathing a rate of 31, when his usual rate is 16; reminds me that it's all real. It being ALS & it's bag of BS.

When he's stable it's like I suddenly become disillusioned that everything will be okay, and fix itself. Then well a rough night comes, and that illusion quickly disappears and I fall apart.

Maybe it's that, that makes me scream at God, or slam things around (it's my favorite method of pouting). Maybe it's because I can't take away the discomfort or pain from him, or it's the pressure to think I can do that to begin with. Maybe it's just that I'm so damn tired from everything we've already had to adjust to?

Really maybe it's just love. That a person I love is hurting, and I feel it all; the anxiety, anger, pain, tightness in chest, etc, and that's all too much to always be able to hold it together.

Anyways, while everyone is digesting a debate that I'm sure was full of meanness and chaos, I'll be packing away to get ready for a trip to the hospital. Where I will have to defend myself for why his hair is so dirty, and have to speak for Steve to all those nurses trying to take care of him, and well we try to find what complication, again, is leaving us here.

This is life with ALS, and while I sobbed on the phone to my mom of how I wasn't strong enough for this, we all know I am; and even in moments of pure exhaustion I'm still here.

Okay, Steve will wake up again soon, and he will be ready to go, so....

Hope Dezember 10/9/16 Hope Dezember 10/9/16

The power of making a house a home.

“I’m going to make everything around me beautiful - that will be my life. ”

— Elsie de Wolfe

One of the more important lessons I took away from my Ayurveda studies, was the understanding of how you digest more than food. You digest everything you take in, every TV show, news story, dramatic facebook post, etc.

Included in this, is definitely the spaces you surround yourself with, and after I started my first classes a year ago, and heard this profound wisdom, I came home and checked in with my surroundings. There was clutter, chaos, and dust bunnies hidden in every nook of our house.

I realized quickly, most of my distractions are because of the excess. I thought this just meant in the house, but as I began to clear spaces, and really put the energy into making them a sacred space in our home; I realized the excess was everywhere. Excess social media time, excess "slack time", excess fires going (metaphorical ones of course).

With each new space I would find that I would let go of the crap taking up space is my brain, with every physical crap taking up space in our house. Crap, such a classy word, right; but I sat for 15 minutes and no other word seemed suffice here. It was all crap, doing nothing but weighing me down.

Okay, enough of that. :) I wish I could include emjois on here.

I will probably always have a project going on here at the house, as something about it really fuels my creative projects for selling. Here are just a few of my favorite sacred spaces in our home. I hope that the documentary team, Steve, & myself will one day do our cribs special for you, because why not? :)

Inspiration window for my book, in the writing nook.

My favorite shelf, which happens to be an antique window

One of maybe 30 dried floral bouquets in the house. It's a small obsession.

Where I sit and create my natural medicine recipes

Because there can never be enough flowers.

Creating a home to feel like a sanctuary has helped Steve and I both mentally and physically. When illness leaves you bed bound/mostly home bound it makes our surroundings much more important. I consider it a privilege and a blessing to be able to spend my days in this home, with Steve. I will continue to live in gratitude and probably continue to change my surroundings 100s of times. :)

Hope Dezember 10/8/16 Hope Dezember 10/8/16

Weaving the pieces

A year ago, I found a folder of items I had tucked away in a back of a closet while pulling out my winter clothes. I dropped the folder, and pages from the 1970s scattered across the guest bedroom's floor. As I picked them up, I see the words, 'wheat weaving' boldly across a paper.

Realizing it was my grandmother's clippings of inspiration as she did wheat weaving, I decided then and there, I was finally going to learn to weave.

I walk into our bedroom, with my eager face that Steve's so familiar with. "Babe, I'm going to learn to weave!" I exclaim!

He starts typing on the tobii, as I flip through the pages that my grandma saved as inspiration.

"Okay what do you need?" The tobii belts out, Steve used to my many ideas by now.

"A loom!" I jump up with phone in hand, so we can immediately search and find one.

I knew once I learned the ropes, I wanted to honor my grandmother in my weaving's, so to draw inspiration, In my weaving nook in the house, there's my favorite photo of her hanging, with the folder tucked away near by.

Days I need inspiration I'll pull the folder out and read trough the clippings of inspirations she had. It never fails that I'm inspired, and I'll find a new dried earth offerings to add to the many creations.

I didn't always express my gratitude towards my grandmother, as she passed away when I was 21. Often times I have little chats with her, telling her how much she did indeed influence my life is amazing ways. I can feel her energy in every weaving I make. That along with the meditative state I'm in while I create these pieces makes each one special and unique.

Hope Dezember 10/7/16 Hope Dezember 10/7/16

Resurface

f you do something out of duty it will drain you, if you do something out of love it will energize you.

These past 3 weeks, I've been reshaping, refocusing, refueling, & rearranging; lots and lots of rearranging. Rearranging of habits, thoughts, & of course the house. Now I'm here to resurface. I won't lie, while yes I did miss feeling connected to all of you, it was nice to just be in our world for a bit. I was genuinely clueless about a lot of things, because it wasn't just a social media break, but more of one from anything extra.

I really needed to wrap my head around all the happenings here, and I couldn't do that with focusing on any other happening.

I will say, the lessons from these three weeks are more profound than one blog will suffice, and of course I have lots of fun things to share; but first my most profound lesson.

If you know me at all, you know that while people just assume I'm naturally a really good person, because I chose love and didn't abandon Steve; the truth is, I am a normal person, working non stop to be the best version of myself that I can be. I know how very capable I am of being a good person, but that doesn't make the shadow disappear.

All this time, I thought, if I could just reach to that really good, kind, patient girl; the dark, inpatient, quick to reaction, sassy one will just go away. That's not really how this works. It just doesn't go away, so it takes a practice everyday to be the person, I know I can be. Realizing more clearly now after these three weeks, that my practice and routine, is really the fuel to be that person I aim to be.

I had to change, and create consistency. Of course, it takes longer than 3 weeks to really lock in consistent habits & healthy routines; but the beginning is the hard part. I really needed to clear the space of anything extra, to really get clarity on what needed to stay, and what needed to go.

For several months, I would often find myself feeling horrible after snapping at someone new each day, for them wasting my time. I couldn't get anything done, and thought it was everyone taking so much from me; more like me just handing it out like some sort of sample lady at whole foods. My understanding on how to use time, was making everything feel like an obligation, like everything/everyone needed too much from me, and I was feeling drained. Instead of having focus, and routines through the day, I was just trying to tackle live's problems in whole daily, and as I would fail I would feel the pile up on me.

Stepping back, clearing space, & rearranging I now see that when I see things from love, it's energizing instead of draining; and suddenly I'm able to to have the time and energy to do all I set out for. I see now if I have clear goals, a consistent practice, and consistent routines through the day, that mindset of love comes naturally. If I just sleep in that day to miss meditation, or decide to spend my afternoon facebook stalking instead of keeping my writing or creating dates; there's no one to blame but myself.

Understanding me and what makes me react, pause, act, etc; is the only path to reaching my highest potential. The more I go in, the more light i'll shine out. With everything going on in the world from elections, to unjust treatments of others, violence, killings, hurricanes, etc; it's more important now than ever, that I remain grounded so I don't allow it to swoop me up in it's current. I can't help anyone being tossed around by everything, I can only help with both feet firmly on the ground, with love leading, not duty.

Ok now to something exciting :).

Well, aside from lots as usual, I had a dear and talented friend, Laurie Moletta, come take some photos of a day in the life of Hope & Steve, and while she was here I mentioned wanting to updateHopie Hippie :) & seeing as she's who fancied up Hopeforsteve, she said, "I'd love to help you." On the freshly madeover page you'll see some new listings; I've been making as often as I can squeeze it in for that and Steve's Drive show happening October 15th. 7 PM 658 Angier Ave Unit C.

It's nice to be back, I came back a few days early because I really wanted to track all of the people I know in Hurricane Matthew's path, and put some intention into helping anyway I can from here. Love you all, and thanks for supporting us!

Hope Cross 9/16/16 Hope Cross 9/16/16

When life gets complicated you adjust.

This will be my last blog for a little while. I plan to take an extended social media break starting tomorrow, that will last for as long as I need it to. I'm using the full moon today, to jump start some changes, and for that reason I will be disconnecting so I can focus all of my energies on what's going on here. As usual don't worry if something happens that is worth reporting, positive or negative, I'll let y'all know. I appreciate how much you all do care about Steve & me, and how much you love to follow along with our journey.

As most of you know, Steve's laundry list of complications have grown to an overwhelming amount. I don't always do the best job sharing this kind of stuff with you, so I want to go into it here. This is just touching the surface, but will give you an idea on why it's hard for me to get anything done around here. I consider it a huge blessing to be able to care for Steve, and the extra projects are never as important as taking care of Steve; but because he requires more time for me, I need to really get a grip on my "me" time and get a routine in so it's used best for my mental/physical well being.

To start with we have the wound on Steve's left lower booty cheek, that's been there since April. We are healing thankfully, and while we have decreased turning him by one day per week, we are still spending large quantities of time to assure we continue on the right path. Steve's right lower lobe of his lung has collapsed on itself from this chronic infection he has had for 3 years now. There's the constant trial of antibiotics, ranging from IV to feeding tube, that his body is slowly rejecting more and more. He's currently on a break from all antibiotics due to extreme stomach complications from them. Then comes the feeding tube, that because his body only gets fed IV foods (due to the gastroparesus) the 'holes' introduced to his body have all stretched; feeding tube included. Now it leaks stomach acid on the hour, requiring immediate cleaning of the site and redressing. The only way they will change his tube out from this point on is if it stops working, because the more they try to introduce new tubes, the more stretching we will have. Now comes our biggest & scariest complication the trach. If you followed us closely while we were in the hospital, you know Steve has the largest trach made, and unfortunately his trachea and stoma have deteriorated. It's speculated these three things are the cause: from when Steve would violently vomit anything put in his stomach (back in his rapid approach to the 67 lbs days), the copious amounts of sputum in his lungs constantly trying to come out, and again he's fed IV. The TPN (IV food) saved his life, but it only goes so far in nourishing, food (and water) really is life. So Steve's trach will now leak 5-6 times a day requiring extensive trach care, packing the stoma, and adjusting the cuff to stop the leak. Of course, all while helping Steve maintain his calm. Because of constant stomach problems, we have an absorption problem. Doctors are unable to figure this out, because some days, Steve will be given his medication and he feels like he hasn't received any and some days he gets the same amount and he can't even open his eyes. Since the overdose that happened in December because of the absorption problem, I have to monitor his alertness to determine dosage of medications. Because there is no way for us to fully comprehend his body, there is no clear cut dosing for him anymore.

So this is just the additional add on's to what ALS already presents us with. If you've ever watched the movie, The Revenent, with Leonardo DiCaprio, most of us have compared him with Steve. He is constantly facing challenges that can easily kill him, yet he overcomes every one, much like Steve. Every discussion with a doctor is the same thing, Steve's outliving everyone's expectations, and they really are all doing the best they can, and keep praising Steve on his strong will to live. Both of us truly understanding this journey is a day to day, accepting that any number of these complications could be enough to take him, we are facing the impermanence of life daily. Fortunately we also choose not to live in fear, and instead live in gratitude for everyday we do get. That part was easy to adjust to, what hasn't been is how I should be spending the time when Steve's napping/resting/watching football. Because it's all so much for my brain to comprehend some days I just walk laps around the house trying to decide what I want to do.

So, until I can get a full grip on how to truly nourish myself with some down time everyday, I'll keep feeling depleted, overwhelmed, anxious, and frustrated. I am okay health wise, so please don't get alarmed; when I explained this to some close friends they immediately became concerned that maybe I wasn't well. I promise I'm okay, and this is to assure I continue to be. I will of course be keeping up with my daily writing habits except mostly it will be for personal growth and the book. If I write something exceptional while I'm gone, I'll tuck it away to share when I'm back.

I'll leave with this simple truth: If I can create a consistent, realistic, routine between Steve and myself, I can accomplish all I want to. I know I am capable of all that comes to my mind, I know I can do better with my time, I know I can continue to maintain my vibrant health, and I know I can keep Steve going as long as he's in, I'm in. I know I can do this all, but know it requires some changes that will take work. SO, with that said, I will see you all as soon as I'm happy with the course we are on.

If you need me and can't figure out how to reach me, email me hope.ann.cross@gmail.com I will still check my email a couple times a week, and if you have my number of course text me. Hopefully after I get a balance I'll actually get better at replying to people; although I wouldn't hold my breath (some things never change ;)).

We love you, and again thanks for caring, supporting, praying, etc. You all help us so much more than you will ever know.

Hope Cross 9/15/16 Hope Cross 9/15/16

Happy clouds

Flow state: A moment filled with that special energy of getting so much done with little effort (being in the zone), much like I imagine it looked like when God made clouds, or how it does look when Bob Ross paints them.

I, like most who experience a flow state, want to have the flow as much as possible, and I pursue it in ways to try to create the energy every day. Because we are humans the flow state doesn't come to us everyday, even if we try all of our rituals, tricks, & routines. What trips me up is, having so many thoughts and ideas in my head that I just want to do them all, that even if I'm going against that current, damnit I still want to accomplish my tasks.

Recently I discovered that on days where the flow isn't there and I'm trudging against the current to get things done, I'm frustrated, anxious, and exhausted. I don't know why it actually took me this long to understand the frustrated periods. Watching Steve champion through the last 5 years, I've learned 3 important things from him (really 300,000 but there's no room for all of that), 1. Take advantage of the good days. 2. Live and enjoy every moment, even if it's not what you wanted that day, you take it and make the very damn best of it. 3. Really there's so many more important things in life, than to worry about taking a day off here and there.

Here's where I caution people, please do not tell me the cliche, "Slow down, you have time."

No I don't. Neither do you. Stop telling everyone we have time. We don't.

If we did I wouldn't wake up praying that I get another day with Steve every single day, innocent people wouldn't get murdered, the earth wouldn't be rapidly warming up while people stand around acting like they can't do a damn thing about it.

We don't have time. So naturally I don't want to waste it, but having the discernment to know how to take the ebs and flows and truly live in whatever moment life is presenting fully and openly, and making the best of them, adds some hours-days-weeks to the clock.

So what we have is choice to use our time wisely. Not time. Choice to pursue the flow, accept the changing winds, and to really show up everyday no matter what it presents you with.