Friday, July 8, 2016

Weary weary weary

OK y'all I'm weary.  I would imagine many of you out there are feeling the same.  However, this isn't just with what's going on in the world around us, but also our immediate world.  Steve had his first rough night since being home from the hospital.  After very little sleep I woke up and of course Facebook hit me with yet another heart bomb! More violence, more innocent lives lost, more senselessness.  I'm broken again because I see people using violence instead of love.  Violence is NOT the answer.

In the middle of the night last night, after Steve needing me again for the 5th time, I just sat silently pleading with God for him to just finally get some rest, and I suddenly started crying.  If you know me, you know in the past 5 years I've gotten so tough, I barely cry.  In fact some days I just want to cry it out, and there's nothing.  Trust me I'm still feeling the feelings, it's just like my heart is toughening much like my hippie bare feet.  

So here I sit in my bed starring at Steve's vent screen crying silently because I couldn't even do the loud sob.  All that was happening was streams of tears.  It was cathartic in a sense, but it doesn't change this heaviness that I'm feeling.  My heart breaks for so much right now. 

I watch Steve navigate this journey with so much grace and drive, and how ALS is relentless and constantly beats him up.  He remains faithful even as he's getting weary.  He may feel like his body is giving out on him, but his spirit is not broken.  It leaves me in awe.  I then watch the hundreds of others on Facebook going through similar journeys, some so stable and living for 15 years without complications, and some right along with us having a hell of a bumpy ride.  It's just so messed up. All of it.

Then to have to take in the madness of the world.  It's literally too much. 

So what do I do?  

Cut myself off from the outside world, and just focus on us?  Trust me, this thought is there daily.  I dream of Steve being cured and us living on 10 acres and being completely self reliant on our land to survive, and not be in this world unless we choose to.  However, that's not our reality, and as much as I would love to pretend we have us a little off grid jungle bungalow here; truth is we need to be connected with others.  We need to be sharing our story of light in the darkness. We need others to survive. So no, this isn't the answer. 

So what is the answer?

Well, seeing as I'm having a morning of little answers, the only word that comes to me is boundaries. I need to set some clear boundaries on all I'm ingesting.  I, like a lot of other people out there right now, FEEL EVERYTHING happening around us.  Deeply.  Every news story, or Facebook story, or Instagram post, etc that I read I feel it.  I feel the persons pain, frustration, and yes joy when that's what direction we are leaning in as a world.

So I need boundaries.  Clear cut, no budging boundaries.  Where I struggle most is when we are home, I get into routines that work so well, then we have a hospital visit; where there is no routine.  I'm eating whatever, having my coffee with sugar, and I'm on social media as often as Steve's asleep just to survive it all.  Then I come home, and I'm off for a few days to weeks depending on things.

None of it's working for me.  Again, if I want to create actual concrete change that sticks in the outside world, I have to be grounded, strong, and stable.  Which, today, I am none of those.  

So today as I hope the doctor and respiratory therapist visits scheduled for today will help us sort through some of our chaos here, i'll be praying and meditating for our world.  I'll also be working on getting myself back on a schedule and determining what my boundaries are.  What balance I need to be able to stay active in the world without it overwhelming me.  

I encourage you all to find your balance and boundaries in this chaos right now.  It's going to be hard because we want to all make a change and use our voices to stand up for what's right; but if we are all leading with weary frustrated hearts, the violence will continue.  We have to get right with ourselves before we can make a change in the world.  

I'll let you know when I figure out my boundaries, and I'll totally be okay if y'all call me out for breaking any. ;)  

All I can say is I love all of you deeply, and I love our hurting world deeply, and I love Steve deeply, and now I will go love myself deeply.  Because right now that's the important missing piece. 

<3 

5 comments:

  1. I can totally relate to what you write. When I read about all the evil and bad thing happening around the world I feel that pain deeply in my soul. It is painful and it is hard to protect yourself from it. I too need bounderies. I send you love and Light.

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  2. Hope, you are loved more than you will ever realize. And if we can all choose just one person to love, and they just choose one person to love, etc. just imagine the impact that would happen. The hate is so senseless. Sending you peace and love Hope.

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  3. Boundaries are the most sacred gift we can give ourselves. I shared a link on your post on fb of an article I felt compelled to write yesterday after dealing with my own a personal experience but in truth, boundaries is a universal experience. Its a conversation we all need to be having, especially considering how much of a trigger it can be for some. I am holding you and Steve in love and support.

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  4. Hope, you are loved more than you will ever realize. And if we can all choose just one person to love, and they just choose one person to love, etc. just imagine the impact that would happen. The hate is so senseless. Sending you peace and love Hope.

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  5. Your love is so unconditional ! You are the purest! It is so courageous when you share the light n dark side of ALS ! You are both the faces of ALS ... As you know in this community your pain is my pain and vica versa... We will keep you both close to our heart and prayers like always . I always say the caregiver is the unsung hero ! Feel our hugs from fla and know we all love you both very much .. Thank you always for sharing everything with us xo Kerri n Pam

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