The Silver Lining of Lemons -- Part 01

 

 

I will ALWAYS find the Silver Lining. I will continue to squeeze the hell out of all of the lemons that I am handed or that I find along the way. I will get every last-bit-of-juicy-wonderfulness from those lemons. I will continue to use that juice to enrich my life & my relationships.
I may only have the reserves & bandwidth to take a single itsy, bitsy, tiny step each week, on this journey to regain a "normal", but I am DETERMINED to infuse Morgan and my life with a sense of routine, stability, & predictability. I wish I could make more gains every week, or even some gains each and every day, but ... I realized last week, that it's M and I on this journey. I cannot count on anyone else. I cannot hope for a constant other than myself. I must be my own defender, my own advocate, my own best friend, my own cheerleader. And, in a year from now, Morgan & I may only be 52 wee-steps ahead of where we are today, but at least I am doing MY best & fighting off all forces that try to drag her & I back into the chaos, the unpredictability, the overwhelming demands, the non-routine lifestyle that has been our life for nearly seven years now.

 

 

I have always (...well for the past six years) wanted to sit-down and list all of the post-stroke-things for which I am grateful. There have been numerous occurrences, lessons, changes, etc. that the stroke has provided to me, Morgan, and/or Wayne and of which I have continually and steadfastly chosen to find the Silver Lining.

Now I am not saying that I don't cry or that I am always chipper--because that would be a lie. I have had bad days along the way, I still get mad, there is still pain and hurt, but I always find myself concluding any tiny journey with a grateful conclusion.

I'm going to attempt to list the experiences for which I am grateful here. ... I'll most definitely add to it along the way, but I want to get a few of these out of my mind and onto "paper":

    Silver Lemon...

• #1: that our families were finally able to meet. Our in-laws had never met and only because of the stroke was everyone able to meet (albeit in Harborview's ICU waiting room -- :-| LOL).
• #2: nearly all of the extended-family members from Minnesota (my home) and New Zealand (Wayne's home) got to meet our little Bacon Bit when she was only three-weeks old!! Morgan will always have those pictures of nearly all of her aunts and uncles and grandparents holding her!! :)
• #3: I learned to say "No" -- I had been a Yes Woman for my entire 31 years prior to the stroke. I did not know how to say "No". The "shoulds" and the "musts" had always been the supreme ruler in my decisions. I no longer feel bound by those. ....I want to elaborate on this ...

... and the other 500+ lessons I've gained, but I also want to get this blog posted... 

 

...so ... More To Come ...

i blog to express, not to impress...

Flakey Tooth Fairy

The Tooth Fairy royally sucks in our household!!!! She has only visited Morgan on the first night one time. It was her first tooth, for which I am extremely grateful. ...but I'm pretty certain that the TF would've missed that night too... however, by the grace of the Universe, we bumped into someone who knew Morgan in the Food Court at Sam's Club. She was a grandma of two girls that attended preschool with Morgan. She had just gone to the bank to get her granddaughters two silver dollars ...she gave them to me... saint. 

Back to present day: there wasn't anything there this morning when she woke-up & excitedly lifted her pillow to see the same items she had places there last night. So, I had to actively choose to not hate myself for 10 minutes of tears & a curled-up-in-the-fetal-position little girl. 

Second Chances

I thought that the stroke gifted me a second chance at life, a life with Wayne, that is. And that's the way I "attacked" it--I aggressively examined, researched, sought out, and attained all that I could to redesign the life and love I had always imagined for us and believed was "right there" for us to grab.
...but, you need two partners actively participating in order to create a healthy marriage, an imagined life, a love with reciprocity. ...not one partner with a vision, who is redesigning and doing all of the legwork while the other partner just needs to abide.I never felt like I was dictating or demanding allegiance or collaboration... at least, I never meant to. I thought I'd have "buy-in". I thought my vision was attractive to each of us as a family.

...but, now I see... I still have my vision. Those were my ideas, desires, and hopes of what a partnership could be. For me.

Those dreams are my truth. And I must live my truth and seek out that truth. Then, "buy-in" from others won't be necessary. I can't persuade or encourage or prove what kind of life that truth would harvest.... that truth must be a shared vision, dream, and hope... shared upon meeting, upon introduction... not a proposition, not a decision.

And that..... that will be my second chance. This... right now... is me living my second chance.

Just Because...

Just because someone didn't disappear ... doesn't mean they still exist.

Just because I miss you ... doesn't mean that I still need you.

Just because I'd give anything to talk with you one more time and have you fully comprehend my words, my emotions, and my desires ... doesn't mean that I'll ever get that wish or the peace of having that one-last-conversation with you.

Just because I felt more heard and seen by you than anyone else in my life ... doesn't mean that you know who I am today.

Just because we were next to each other these past six years ... doesn't mean you were by my side.

Just because you don't have words ...  doesn't mean that I don't hear exactly what you're saying.

Just because all of me wants and needs to move-on ... doesn't mean that all of me isn't wishing to stay right-here and somehow make "this" enough.

Just because I loved you then ... doesn't mean that I love you now.... but I do. 

Hey Grief, ✋ Talk To The Hand!

Love this❤

 ...grief is a sort of limbo, isn't it? ... "alive but not living..."

The problem for me is not a lack of desire to, or knowing that I can, leave this grief... The problem is an uncertainty of how to:

1) reconcile the grief with my present and looking towards my future

2) feel again... and all-the-while knowing that I will ultimately lose again...

3) say to grief, "Hey, talk to the hand" when it pops up in my life unexpectedly. 

Looking Ahead: looking forward to my Second Firsts

Life after loss is...

  ... accepting that your "2nd firsts" are just as exciting & okay to treasure & just as good as your 1st firsts...

•your 2nd first-kiss

•your 2nd first-date

•your 2nd first-house

•your 2nd first-dog

  ... letting go of the ideal that you wanted to have only:

•one husband in this lifetime

•one first-kiss that developed into a love story

•one anniversary

  ... allowing a new life to unfold without being too tethered to the old.

Sunrise... promise of a new day

..."[drawing upon] the Grace [i feel in the universe around me], I pick myself back up, I put one foot in front of the other, and I look in the mirror ... and decide to stay. "

Yet again, here is another of Katy Perry's songs from her PRISM album.... She's a pastor's daughter, who moved away, defined herself, married an addict (albeit a recovering/sober addict).... I CANNOT begin to tell you the way her words resonate with me regarding the demise of her marriage and all that I've been going through with the stroke, coming to terms and changing ingrained behaviors and shifting a belief system that allowed me to be the enabling-wife-of-an-alcoholic, the way I lost myself while trying to save him both literally and figuratively, the divorce, the pain, the seemingly uniqueness of our chemistry and love. It's uncanny, and it's absolutely brilliant that someone as amazing as Katy has written songs that truly define my inner struggles. I did not realize the depth and quality of her character until I watched her movie / biography / documentary Katy Perry: A Part of Me ...  it's really quite remarkable and inspiring. And the events that begin to unfold during the movie shed light on, and at the time foreshadow, her songs on PRISM, her most recent album. 

Yesterday wasn't too bad... well, that lasted until Morgan fell asleep... then it became a very dark evening for me. As if it being April 1st wasn't bad enough (being the sixth anniversary of Wayne's stroke), I get a call from the Adult Family Home (AFH) in Lynnwood where he is now living... He's gone out for a walk and hasn't come back. He's been gone for 12 hours and they are concerned. I will update this story and add details to it at a later time/day, but for now... the police were called, because this family has only recently began to care for Wayne (he moved in on March 12th), they didn't know this is "standard Wayne behavior". So, I had to speak to the officer, give the whole history, recount all that has transpired over the last 6+ years ... assure him and the AFH owners that if Wayne disappears or dies, that it is not their fault, they are not to blame, and I would not hold them responsible. "Wayne is gonna do what he wants to do..." I told them...

So as much as I tried to just skim across the surface of life yesterday, and just coast on my ice skates across the very thin layer of ice that is April 1st for me, it didn't happen... I knew to make it through April 1st without falling apart, it would have to be a day (or ice-skating "performance") without any sudden movements or stumbling and falling.... because I knew if I tripped, I would be falling all the way in. All the way into the freezing cold water, immersed in the memories of finding him lying on the bathroom floor, the sound of Morgan's 3 week old "wah" echoing in the ER room, the smell of the hand-sanitizer and hospital linens.

And, on my own, prior to receiving the call from the AFH, I was close to falling in, several times yesterday, but I stayed stable, I stayed upright, I stayed focused, in control (conceal, don't feel--like Elsa says in the movie Frozen), and I continued to glide over the thin patches of ice on this April 1st pond. CRACK!! ...then I answered that call from the owners of the AFH... SPLASH. In I went, immersed in April First Crap. :(  It was cold, lonely, scary, maddening, ... ugh. 

But, here I am on April 2nd. The light has followed the darkness. The sunrise is persistent. There is no stopping the next moment in life from occurring. I find myself a few steps away from the cracked ice and a safe distance to the shore, I'm out of the freezing water, and have been dried off and warmed-up by a decent night's rest, ... and ... I pick myself back up. ... I put one foot in front of the other. ... And as a friend told me back in October, when Wayne broke his leg and the dominoes began to tumble into their current "design" that they lay in today, "all you have to do is breathe"... "that's it. the only thing you need to do, is breathe. Everything else can wait and you need to stop all of the other stuff.  just breathe. ..."

And that's about all I can do. Breathe. ...just breathe, julie... another one... okay, good. ... breathe. okay, again. ... just breathe.......

By the Grace of God - song

[Verse 1]: Was 27, surviving my return to Saturn.
A long vacation didn't sound so bad.
Was full of secrets locked up,
Tied like Iron Mountain.
Running on empty, so out of gas.

[Hook]: Thought I wasn't enough,
Found I wasn't so tough.
Laying on the bathroom floor.
We were living on a fault line,
And I felt the fault was all mine.
Couldn't take it anymore.

[Chorus]: By the grace of God,
(There was no other way.)
I picked myself back up.
(I knew I had to stay.)
I put one foot in front of the other and I,
Looked in the mirror and decided to stay.
Wasn't gonna let love take me out that way.

[Verse 2]: I thank my sister for keeping,
My head above the water (above the water).
When the truth was like swallowing sand.
Now, every morning,
There is no more mourning.
Oh, I can finally see myself again.

[Hook]: I know I am enough, possible to be loved.
It was not about me.
Now I have to rise above,
Let the universe call the bluff.
Yeah, the truth will set you free.

[Chorus]: By the grace of God,
(There was no other way.)
I picked myself back up.
(I knew I had to stay.)
I put one foot in front of the other and I,
Looked in the mirror and decided to stay.
Wasn't gonna let love take me out that way.

[Bridge]: That way, no, that way no.
Not in the name, in the name of love.
That way, no, that way, no.
I am not giving up.

[Chorus]: By the grace of God,
I picked myself back up.
I put one foot in front of the other and I,
Looked in the mirror (looked in the mirror).
Looked in the mirror (looked in the mirror).

[Chorus]: By the grace of God,
(There was no other way.)
I picked myself back up.
(I knew I had to stay.)
I put one foot in front of the other and I,
Looked in the mirror and decided to stay.
Wasn't gonna let love take me out that way.

Eve of the Death Plea

***I cannot plead with friends and family enough to: PLEASE appreciate your health; soak-in the presence, the smile, & the touch of your loved ones; gaze into your spouse's eyes and see them, really see them; appreciate that your toes perfectly bend with each stride; choose to focus on what you have and all that today offers; live and love as though tomorrow may never come; don't have a future moment, a pending success, or a "someday when" be the focal point of your days and be the starting point for when you can really begin to live. ***On the eve of the 6th anniversary of Wayne's stroke, I am reminded of just how much I had wished, while sitting in the ICU, that Wayne and I had bought "that sailboat" and that I had experienced sailing off-shore with him. ***One moment, one diagnosis, one red-light ignored... it can all change so quickly...

Leading a Fear- or Love-based Life?

Today, the sun is shining, both figuratively and literally.

I have a cleared mind, calmed soul, inspired actions, energized body (worked out last night for first time in 2+ months), and a renewed onus to my "Julie-ness".

Thank you, friends, for being a safety net for me when I fall and for reflecting back to me the qualities I possess and too often forget about. <3 <3 {{{hugs}}}

**let my life be led by love, not by fear**

Quick search for more information regarding living a fear-based life versus a love-based life led me to this web page: 

http://qudrahealing.com/2011/11/23/fear-vs-love-based-emotions-and-their-influence-on-our-lives/ 

https://www.facebook.com/julie.bacon.186/posts/10151909319866805

Sent from my iPhone

Pseudo-widow (...hey! ...that rhymes! ...kind of...)

I hate these nights--the nights where it feels as though nothing soothes the irreconcilable loss and confusion my soul feels. I sometimes think another partner, or just a stand-in for a while, to comfort me would help. But like any widow (or pseudo-widow/stroke-wife in my case), I think the thing I long for the most is my ex's choice of words and his touch and his smell and to hear him say my name. And for him to "come back" and comfort me.
I just want him to hold me in bed, spooning me, while I sob and share how painful the last six years have been and to have him hear me, like really hear me. And for him to empathize and agree that I've done a great job with Morgan and acknowledge that I've chosen to continue living and all the effort that I have put into doing my "work" to process everything post-April-01-2008 (date of the stroke) has put me in the best possible spot I could currently hope to be in. I don't think I have been passive or stagnant in my healing and processing, and maybe that's part of the pain tonight too... why do I still hurt so badly and why haven't I finished this? I just want to be on my new-path that I thought I had already stepped onto and start moving forward... I'm not saying that I want to forget where I've been, who I've been with, or that I don't want to look back from time to time. But I do wish there were less tethers to the old.

As a pseudo-widow, I believe these tethers are confusing due to the nature of life post-massive-stroke-where-a-craniotomy-is-required. I lost Wayne the night of April 1st, 2008... he went into the bathroom, but he never came out. I realized in Feb 2013 that he died that night.  It felt like we saved him, that he miraculously lived, but as I've said before, Wayne "is but a shadow of the man I married and loved".
So, even though he's gone, and I grieve the "death" of him, he's literally still here....he can physically stand in front of me and my mind can't deny that he is alive, he smells like him, he laughs like him, and he can give me one little look that feels like the old-life. So, I grieve, I deal with the loss of my partner, I accept these facts... but then my heart, my head, and my processing gets all confuddled when...
...he knocks on my door out of no where, completely unexpectedly (yes, he takes five buses/four transfers from South King County to randomly show-up on my doorstep);
...he calls me, as he did tonight, crying because he hates the assisted living facility in which he lives and he chooses to call me, the person who was his best friend, advocate, enabler, spouse, confidant for more than 14 years, reaching out to me when he's miserable;
...when my heart gets hurt, on this new path that I'm trying to blaze and map-out, and I find myself going to him for a hug and to wipe my tears...
...he's the one person on this earth that knows me the best and in the most depth... correction: he knows me the best up until the stroke, but we're stuck in April 2008... he doesn't understand the weight, the challenges, the losses, or the pain and fear I've endured and pushed through while raising a newborn and trying to save, advocate, and stay connected to my partner, spouse, and best friend...

I have attempted to capture, and continue to work through, the connection I feel to Katy Perry's new album, Prism. It's been astonishing and wonderful to have words provided to me (the lyrics of her songs) that help me to identify my feelings and pain, but the intensity of the parallels and how her words resonate with me, my soul, my heart, and my head has been a bit disruptive to my life the last few weeks. I am certain that my mentioning her album will be a common theme in the months to come as her words are profound to me.
Oh, and you know what else?!? I'm also just realizing it is Feb/March, and that's when things began to unravel in 2008. And the smells of the air, the sun's position, Morgan's upcoming birthday--they all, subconsciously, are very sad reminders, and "triggers" for my subconscious, of what was, what was about to be, and all that happened.

To follow an ambulance, with my 3 week old (first and only) child sitting in the backseat, while pleading to the universe to allow him to not die before we get to the hospital so that I can see him at least one more time... that is the first of many things I wish I could forget and never experience.

...going back...

I have, and will continue to, post some old blogs that I drafted and composed, but didn't post.
Tonight, I just published one from January 16th, 2013 regarding how Wayne asked me for a divorce...  stay tuned. More to come. There have been A LOT of occurrences, this last year or two, that I haven't had the bandwidth to share....
http://thebaconfamilyfund.blogspot.com/2013/01/recognizing-depth.html

Go HAWKS ⌒.⌒

Today's a 'Bad Day'... Can't Stop Remembering 2008

Losing Wayne.... again

I find myself crying, sobbing, vocally mourning the loss of Wayne like I did the week of the stroke. I'm surprised by this, yet I'm finding it to "make sense". We are at another "fencepost" as a caregiver class referred to it; a transitioning spot where what was is no longer and the next stretch of fence looks very different from what's behind us. and it's unknown. I'm not bad with unknown (at least I don't think I am) but I am terrible with closing chapters--and I mean terrible--and with letting time pass to allow for healing (a.k.a. Patience).
Wayne needs daily, maybe hourly, care; so he will go to a skilled nursing facility. His apartment lease ended and I've been moving him out over the past week... It's another crazy "widow" type experience, going through all of your loved one's belongings and having memories flood your being without warning, and having to decide what to keep versus what to donate.  My body is manifesting the stress physically: I've been in cold-sweats for 8 days now, my oh-so-awesome facial numbness, and a rash taking over my right hand.
I miss you, Wayne!

 November 2nd would have been our 11 year wedding anniversary.

I am lonesome for him--it hasn't been the same since 2008 (obviously), but at least I had some bits of Wayne in my life. I'm at the point where I'm realizing I've been underwater for months, treading water, holding Morgan with one hand and Wayne with the other, kicking like mad to get all of us back up to the surface... but I can't.  The divorce and the loss of my job caused Wayne to be on state healthcare and benefits. And then the leg fracture requiring surgery and after-surgery PT (physical therapy) and nursing and pain management care--it was like a trifecta that demanded I take another path.
   I wish I could continue to muster the unhuman strength to get all three of us to the surface.
   I wish he could live up the street from us, take the bus down to our house and visit Morgan and/or Luna (our 2 year old Australian Cattle Dog), and spend Fridays with Morgan.
   I wish he could have freedom, independence, and a life.
I called Wayne two days ago, so Tuesday, and just sobbed on the phone. He did too. I said, "I'm so sorry that I can't come visit you at the hospital.  It brings back too many memories, and I really need to detach from being your primary caregiver. I hurt and hate that you are sitting in a hospital, and that you are probably sad, hurt, and lonely.... but I'm sad, hurt, and lonely. I wish you had chosen me.  I can't protect you from sadness, pain, or loneliness.  I can't protect you from anything I'm realizing. But I can protect myself. And it is so painful to not be there with you or for you!  I'm so sorry that this is what life handed us and it sucks.  I love you, and I'm not taking Morgan away from you, or abandoning you. We'll come visit you when you move to your new spot, once you are out of Harborview. Okay? Okay. Bye."
The best analogy I can identify is how it must feel when your loved one gives you the last seat in the life raft... how Rose must have felt in Titanic when Jack left her to survive. Why does it have to be a choice? Why can't we both survive? Why does one of us have to sink?
I suppose we both can survive, actually.  I just can't be the one helping Wayne to survive. He needs to help himself do that, and if he needs assistance in doing that, it can't be me to "save" him.

*Light bulb* (hahaha--like in Despicable Me. LOL)

Manifest-ering

On Saturday morning, as Morgan and I walked to the car after a sleepover at one of her friend's house, she mentioned Wayne for the first time in 12+ days. "I hope daddy is okay.... I wish I could see him--can I visit him at the hospital?" "Absolutely. Let's head there now. Okay?" "REALLY?!?! Oh thank you Mom! Thank you!" as she tilts her head to the left, places her prayer-shaped hands on her left cheek, and bats her eyelashes. (She is "Gone With The Wind" girly-dramatic--I can actually imagine her saying, "I do declare!")

Then, a few seconds later, "Mommyyyyy? I'm scared to see daddy," Morgan said timidly. So, we talked through it and what to expect and what our plan was and how long we would stay and what did she feel our purpose was in going there and what we are not going to do while there, talked about what she was scared of, talked about all of it during the 15 minute Express Lane drive south to Harborview.

As I turn onto 9th Ave, I can feel my lip go numb and my breathing get shallow and exaggerated... I hate seeing the Emergency Room entrance... it all rushes back:

racing from Northwest Hospital on 2008-April-02 to Harborview, not knowing where to go, not knowing if Wayne died in the ambulance during the emergent transfer, having to get into the parking garage and unload Morgan and the stroller and the diaper bag, unsurely approaching the Harborview West Entrance and if this is where we were supposed to be, seeing several people leaving Harborview carrying plastic, bright neon orange Harborview Discharge bags... "Please let Wayne get one of those bags someday," I say under my breath.  "I hope we get an orange bag..." I said to my mom walking beside me as I push the stroller through the automatic doors. The possibility that he may not leave the hospital at all but rather have one last transfer, to the morgue, was very real.

We easily find parking on a side street, and before we get out to visit Wayne, I turn to Morgan and calmly and matter-of-factly explain, "Because daddy almost died here [5 years ago], the sounds and smells and seeing certain things can be very stressful to me. It also brings back a lot of stressful memories. And when I am that stressed, I can have a difficult time breathing and staying calm.  So, I am going to have music playing in my left ear [through my hands free earpiece connected to the KindleFire] to keep my brain busy and to help keep me calm. I hope we can stay until you are ready to go, but I might need to leave if I get too stressed-out." She agrees to this plan.  I also acknowledge "if you get too stressed out or scared, we can leave at any time. Just tell me when you want to leave..."

Me as a 'Sister Wife'!

When all of us "stroke wives" were in the depths of grief, problem solving, mastering the juggling act of so many roles, I joked that what we each really needed was a "sister wife". I'm sure the idea came from my adoration, commitment, and obsession with HBO's "Big Love" series.

We each needed someone who loved our stroke-survivor husband as much as we did, was willing to stay "knee-deep" in the trenches of this post-stroke life, and be a support system, shoulder to cry on, and another adult brain in-the-room to help make decisions for us stroke-wives.

I received this mug in the mail today from one of my fellow stroke-wives... It's like a trophy or an award!

So... "I'd like to thank the academy".... of aphasia, apraxia, epilepsy, neurology, ... To all of 'the therapies'.... you know who you are ;-) ...

And to my stroke wife sisters... *tear* ... I don't know where I would be without you, both mentally and physically, if I had not had you to share AND CONTINUE TO SHARE this unique, forever altering journey.

LOVE YOU 'sisters'!

Broken

So many things seem broken.

So many things are broken.

I feel broken. My commitment to Wayne as a friend feels broken. My perseverance and steadfast dedication to facilitating, fostering, and feeding a relationship between Morgan and Wayne has been broken.  My willingness to include Wayne in future family activities, even if or when I have a new partner, has a fracture in it now that may never heal.

Seven days ago, none of this was true.

Six days ago, Wayne fell and hurt his right ankle, and it was not realized by me until I was dropping Morgan off at her dad's apartment on Friday afternoon for their weekly sleepover.
After Wayne didn't answer Morgan's repeated (and annoying) doorbell "alerts" and I finished sending the text message that I was typing, I used my key to open his apartment door only to see him struggling to stay upright, in severe pain, using a cane with his one working arm as a second point of contact with the floor as he wasn't able to put weight on his right foot. My high-functioning, wanna-be-ER-doc, skills kicked in. I rush to help him, and with his arm over my shoulder, we attempt to get him back to his bedroom, but he can't keep his right foot from hitting the floor, so I quickly squat down, wrap my arms around his waist, and lift him while walking him back into his bedroom.
I started having an anxiety attack and felt myself starting to dissociate. He was adamant that I should take him to the doctor, but I seriously could not take-in the millions of feelings, thoughts, reactions, concerns, flashbacks... the lower right quadrant of my lip and chin started to go numb, which is my body's (unfortunate) white flag. And then I notice Morgan quietly standing in the corner of his bedroom, tears in her eyes, lips quivering, but so desperately trying to not cry, show concern, or distract my attention from caring for Wayne which has been (unfortunately) the most emergent task over the past five years when he is in need of something. Both Morgan and I have been on the back burners for five-and-one-half years! Ugh! And not okay!
I pull Morgan towards me, calm her, get her settled-down as much as I can in a very short amount of time, because I now know that my body had already surrendered and I needed to get me out of there too. I set Morgan in front of the TV: our most frequent, reliable, and not-as-damaging-as-what's-happening-in-the-next-room babysitter over the past 5.5 years.
I close the bedroom door, and say, "If you can get yourself to the pub to land yourself in this condition, you can get yourself to the doctor.  I can't do this," as I begin to have another panic attack and can't catch my breath which scares me which makes it even worse... again: ugh.

I take Morgan home, talk over my thoughts and options with a kind friend, and decide to beat the stress out of my body by working out and running on my treadmill rather than what has become my "norm" when my body throws-up-its-hands (the norm: taking an excessively long, steaming hot shower while I lean against one of the walls, while the water pours over my back and neck, snuggling my arms in between me and the now warm shower wall, hugging myself, and just crying. Crying hard. Not always making sound, sometimes not able to take-in a breath because it seems that there is so much that needs to come out, but rather frequent drops of silent tears from a heart that aches).

I feel broken. I've started living, loving, and laughing again in a way that feels so normal and Julie-esque (sp?)... but there's an overwhelming pain that still exists in me, a trauma experienced which can never be forgotten, and triggers that cannot be prevented or predicted. And it all appears to be just below the surface. Tucked away just enough to fool you into thinking that you have moved beyond that pain, that you are "really doing well", that you can tackle a new "stressor" (be it a good or bad stressor, like Halloween & Trick-or-Treating, or Morgan's first Picture Day at School, the loss of a tooth & therefore coordinating with the Tooth Fairy), ...
I've dealt with all of this, while raising a fairly well-adjusted, bright, caring daughter, without a partner. My partner was the "affected" one. I haven't had anyone to come home to, to get a hug from, to talk through and process the day with, to laugh with and tease each other, to make small & seemingly meaningless decisions with, or huge, instrumental, high-impact decisions with. There's a loneliness that I'm unsure of how to "handle"...

I cleared my head on Friday by pounding out the stress, frustration, and angst in me on the treadmill and expelled the anxiety, stress, and fear from my body, like the toxins they are, through sweat!

So, I cared for him over the weekend: iced his ankle, tended to the multiple wounds on his right limbs, ACE bandaged his ankle... on Monday, it was much worse. My body went into full-on denial mode and was waving all of the white cloth items it could find. I pushed through and took him to an urgent care and they X-Rayed his leg and it turned out to be broken. I couldn't catch my breath the entire time he was in the clinic, so the doctor called me and told me that it was fractured, not just sprained like we thought, and she will send him via ambulance to a hospital. I, of course, chose Harborview, and he was prepped for surgery upon arrival.

The idea of what our life could look like continues to shift, shatter, morph, melt, settle, but right now it feels broken.

Recognizing the Depth

January 10^th, 2013 was an eventful day to say the least. It’s been difficult to get Morgan off to preschool—I work from home now and I have conference calls that start before I can get M to school, but then I also have a very small window to get her to school. And, quite frankly, all excuses aside… I don’t have the energy, the steadfastness to fight the uphill battle everyday. No matter how much it would be easier for all of us…. It. Just. Is. Not. Possible. Can’t do it.

I can’t get her dressed while she begs and cries to not go to school. I can’t get her to eat, I can’t get her in the car, I can’t get her into the preschool building and dropped off. Now, I can’t. Not “I can’t get her to do what I’m saying”. If I had time, patience, some tiny morsel of stamina and “bandwidth” left, I could…. But I don’t, so I can’t.

I probably could if I wasn’t working and had all day to recuperate and then get ready for her energy level to come home and do the evening routine.

We are barely skimming by. On every front. Barely getting enough hours in at works. Barely getting food into our systems. Barely getting sleep. Barely getting Morgan into a routine (morning, day, or night-time). Barely able to pay rent. Barely able to fit into my clothes I’ve gained so much weight these past 5 years. Barely able to imagine what 2013 will hold.

My cell phone rings mid-morning and a girlfriend that I really admire and love, and had secretly hoped to be closer to her and a friend she would “select” to confide in. Well, it was her on the other end and she was asking Morgan to be her flower-girl in her wedding this summer—August 2013. Yay—how absolutely exciting!!! Morgan instantly went and packed her Strawberry Shortcake rolling suitcase and set it by the front door. “When do we leave?!?!”

Then, my friend Beth asked me to be a bridesmaid in her wedding… wow. The depth of connection I felt was amazing. The depth of appreciation I felt was great. The depth of being honored by a woman I hold in high esteem was filling.
This is the little “push” towards normalcy that I’ve been seeking. How do I start getting out, into the world, into friendships, and living life? This wedding was gonna be it. I am elated!
I took a break to eat lunch, and Wayne came into the bedroom where I was sitting on the edge of the bed, watching tellie, and eating lunch. He stood there, dazed and eyes glazed-over, left hand on his left hip, shaking his head, and lost in thought while looking out our bedroom window at Puget Sound.
“You look concerned?”

“Yeah!”

“Do you wonder if we’ll get back to New Zealand this year for vacation?”

“Nah. Whee,” while shaking his head and waving his hand to indicate ‘No’ like he was sweeping crumbs off a tabletop.

“It seems like it’s something in the future. ?? Yes??”

“Wheee! Yeah. No, no, no.” (which translates to, “Yes! Totally—you got it. Something in the future!”

This went on for 20 minutes. Back and forth. Yes-No questions from me. And random words with clear inflection and excitement or disappointment in his voice when I got it right, or got it wrong.

Finally, I hone-in-on the fact that he is talking about his and my future. And then I pause… I freeze. “Do you want a divorce?!?”

And, Wayne, still zoned, calm, and matter-of-factly, didn’t show excitement or like he usually does when I finally get the point, “Fuckin’ finally”… he just nodded his head, and said, “Yeah. …. Yep.” And then he broke the unbodied gaze and looked at me with defeat.

I felt the same. Defeat.

The depth of defeat I felt was suffocating. I felt the depth of this realization for him, and to make this decision for our family, was startling. Deep. Deep, deep, deep under heavy boulders. Deep, deep despair. Deep fear and anger and loneliness.

I believe he saw Beth’s invitation as a sign that people move on and get re-married. That happiness is still an option. That the road on which one is traveling is not necessarily the best road.

Five days later, on January 15^th, I had a long dream. A dream from which I awoke crying. Sobbing. It was a dream of Wayne and I, sitting at the plastic white table down on the Seattle waterfront where we sat on our first date. He looked like the 1999 version of himself—more of a mullet-style hairdo, less of the post-hypothyroid-bulging eyes, no dent on his forehead from the craniotomy, and words. Words that I long for him to say and for me to hear.

“I’m calling it,” he says in my dream. “What?! You can’t just call it. We are in this together!” “Well, I’m calling it.” “You can’t just make that decision for the both of us. I’m here—I love you. We aren’t calling it quits!” “Well, I am.” I couldn’t believe it. How could this deep love of our lifetimes just be done? How could he be just putting a “lid” on this deep life that had intertwined and evolved?

“I’m not leaving you!” I scoulded. He said, “I know. I’m leaving you. I’m holding you and Morgan back. I’m not moving forward, Julie. I’m stagnant. And you and Morgan aren’t moving forward. You’re stuck. You need to move forward.  And you have to do it without me.”

“I don’t WANT to do it without you!”

“You’re gonna have to.”

“You do not get to make this decision for all of us!”

“I am, and I did.”

“So… you still love me then?!? I thought you asked for the divorce because you didn’t love me anymore with how much I’ve changed since the stroke….”

And he just smiled his Wayne Bacon smirk and did his fake-wink at me (where he acts like he is winking his right eye, but he turns his head to the left while tipping it toward me so that I can’t see his left eye and it looks like only his right eye is closing… but, he can’t wink… so he’s blinking, but hiding the left eye from me).

He does love me—okay. Well, now I’m not as confused, because I just couldn’t understand how much we could love each other and then have it just all be gone. Poof. Vanished. Shallow. Nothing.

I woke up, to January 16^th, 2013, and I was bawling. He woke him up, and I told him my dream, and asked him if he still loved me but just realized how “we” no longer worked… and he started to cry.

I felt the depth again. It was no longer where I would reside and live and love and laugh… but the depth was back.

Bacons are Home & Doing Well, but I'm having an adrenaline crash

I went into Harborview and was told straight away that they were anticipating discharging him this afternoon. I started crying to the neurosurgeon and physical therapist--I'm not ready to care for him like this!! Since I wasn't really there on Sat. or Sun., I didn't think he had made all that many gains or recovered his lost abilities. I met with "all of the therapies" (PT, OT, SP); I really challenged PT to ensure he was really able to get in and out of bed on his own, get up and down from a seated-position on his own, and know what stretches he needs to do on his own (not me doing it with him).

I was surprised at how much he was able to do again, compared to Wednesday when I called 911. And how much the swelling had gone down!  Wow!  Okay, so he just may be ready to come home today.

"But how do I know he's safe to cook? Or that it's safe to leave our 4-year-old daughter with him? He's caring for her this summer since she's out of preschool for July and August." I told them about the November 2008 car accident he was in and how afterward he had new deficits (i.e., dressing apraxia, opening vs. closing doors when leaving the house). How were we sure he didn't have some more detrimental apraxias?!?  They didn't know that these were concerns of mine and stated that they'd have OT come and assess him again, since she assessed him when I wasn't there, and that SP would come talk to me about comprehension and cognitive function.

After PT's evaluation, I sat and quizzed him to see if his comprehension was back up to where it was pre-surgery. I noticed his eyes were lit-up again; the light behind his eyes seemed to be turned on and he didn't seem to be in a fog anymore. He was able to do our standard thumbs-up for "Yes" and thumbs-down for "No" that he was not able to do at all when I called 911. Then I tested him with basic questions: "we have a son", "Is it December right now?", "This is my knee" as I pointed to my ear. Before today, he would've looked at me like, "Oh! You want me to copy you" and he would've grabbed his ear and tugged on it while he looked at me like, "Yeah you idiot, that's an ear! I'll grab mine and you'll see... I totally understand what you're talking about!" He would've missed the whole intent of the question and the action.  Now he's understanding that what I was doing was quizzing him and he also understood what was required of him.  Whereas 3 or 4 days before today, he would have missed the boat, so to speak, in terms of what was my intent in grabbing my ear and looking at him with a questioning face and a high pitched tone.

After a bit more "talking" back and forth about Morgan, and if he thinks he's safe to care for her, I went and told the staff that I was okay for him to be discharged to our house instead of a nursing home or skilled nursing facility.  I was definitely reassured after our "conversation"; he was able to assess his abilities, his deficits since the surgery and how they would limit him.  Here was our conversation: "Do you think you could walk Morgan up to the park by yourself again?" "Ummmm, no." "If I drove you two up there, would you be okay hanging with her for an hour or two?"  "Yep, whee, whee." (translation: "Yep, totally. Yep, I could do that!").

Rest Up

My dad, Morgan, and I went by on Saturday for an hour to say "hi". At first Morgan didn't want to get out of the car--"I don't want to see Wayne" she'd whine, over and over again. Then, when I enticed her with a walk with just her and me and that she didn't have to go into his room, she agreed to unbuckle and get out of the car. As we were walking into Harborview, Morgan was skipping and saying, "Which way to Wayne's room? I can't wait to see daddy." And then, she laid on his bed with him, watched Scooby-Doo, and we couldn't get her to leave him. She wanted to just stay with him and told me that I could come back later and get her.

None of us visited today. My dad and I got a lot done around the house, but it also just felt good to not have to be in-charge or care for Wayne for one day since he'd be back on my plate in a day or two. The doctor and therapists estimated that Wayne would be discharged to my care tomorrow. I called Wayne and talked to him on his hospital room's phone--I told him I just needed a day of being home, and that I thought he could just relax and sleep and heal as much as he could before coming home to a 4-year-old daughter.

Tight Hamstrings are the Culprit

PT came and assessed why Wayne couldn't sit-up on his own, had trouble walking, and what his grimaces and flinches were due to: extremely tight hamstrings. He can't even extend his legs all the way--not even halfway. He was given stretches to do. At least he doesn't have nerve problems, a herniated disc, or motor control issues due to additional brain damage.

The neurosurgeon came by around 5:00 PM again today and stated that they were going to just keep him over the weekend, have the staff walk him around a few times a day, have PT see him if possible since therapists are scarce on the weekends, and then see how Wayne is doing on Monday.

So, we're in a sort of wait-and-hold pattern...  *sigh*.

Chop And Change

chop and change (British & Australian)

to keep changing what you do or what you plan to do, often in a way that is confusing and annoying for other people [per http://idioms.thefreedictionary.com/chop+and+change]

Let's just get one thing straight--I'm not the one changing the plan, I'm the annoyed one.

A very senior neurosurgeon came into Wayne's room around 4:45 pm and showed us the CT images (see one below) from last night's ED visit. He pointed out how the fluid is collecting and pushing in on the brain and out on his scalp. He stated that he doesn't care where the surgical team puts the shunt (i.e., ventricle, outside of the skull, in the midst of the left hemisphere), but he knows it's what needs to be done--there's really no option.  The shunt would be a tube that is placed under the brain, up into his left ventricle, down through the base of the skull, curving around to the clavicle/collar bone, then coming up to a subcutaneous level (so just beneath the skin), down across his chest and ribs, and into his stomach.

After that doctor left our room, Wayne looked extremely dismayed, saddened, teary-eyed, and defeated. I "listened" and rubbed his arm and just kept telling him it would be okay, it's standard procedure, and... there's no choice right now--just like when we had to remove half of his skull on Apr. 2, 2008 to save his life... this has to be done and we'll do our best with whatever comes and results.

Then, Wayne's doctor, the one who has performed all three of Wayne's cranial surgeries, came to the bedside around 5:30. He is matter-of-fact & to-the-point, but will not downplay our concerns, kind of guy.  He incorporates our comments & concerns & suggestions, he really listens, he states that I, Julie Bacon, know Wayne better than any of the health care providers and that he has to trust me to indicate when Wayne's neurological state has changed, & he asks 3 times if we have more questions.  Great doctor!
This surgeon outlined a totally different plan...

I have some great news (but please keep the above phrase & description in mind while absorbing the now-current plan for Wayne):

    Wayne's neurosurgeon decided around 5:30pm that he'd really like to observe Wayne for another day and the bulbous pocket of spinal fluid hanging out on his left temple and corner of his forehead.  The doctor stated that he believes that if we keep Wayne inclined in his hospital bed, and he gets up and starts moving around and walking, the fluid will drain on its own.
Whaaaa?!?!?! So no Shunt...???
"No, that would be our last choice."
"Then why have we been waiting all day for the OR to call, and Wayne hasn't been able to eat all day?"
"I put the shunt on the table so all the staff and you guys were ready for it. But observing him over the last 24 hours and assessing it with the team, we believe his body could take care of this.  And we want to give it a chance to do that. We'll give it another 24 hours, he can't recline less than 30 degrees, we'll get him up and walking, I'll order the therapies (OT, PT, and SPEECH) to come and evaluate him tomorrow.  I'm not sure what's going on with all the difficulty with his leg and core muscles. But, we need to figure that out."
"Wow--okay.  We are definitely fine with waiting to put in a shunt!!"
Wayne instantly perked up, inclined his bed, and his spirit was lighter, ready for the challenge of doing this on his own versus an "implant".

We may still need to do the shunt, but for now, Wayne's in control of his body again... which is what any 41 year old strong-willed man would want.

He still has some additional deficits since the surgery.  His comprehension has declined. His physical ability to sit-up, stand-up, and walk on his own has diminished--he had major surgery, but it's not just slightly worse, it's definitely declined. His limb apraxia is much worse.  His ability to communicate is worse. He even used his eating utensils incorrectly--he was using the soup spoon to try and pierce and grab his entire pork chop. I said, "Try using the FORK." This does several things--it tests his listening/comprehension, it tests his ability to change what he's already planned his body to do, it tests his ability to look at the utensils and pick which one is a fork. I became very saddened by him using his soup spoon because this is what he did frequently back in May 2008.  "Really?!? I'm back to teaching him toddler things again?!?! We're back to one month post-stroke! For the love of.... (*deep breath*)... Okay, well--we taught him all this before, we can do it again."
He picked the fork out of the four eating utensils in front of him, and he used it correctly! When he'd cut and eaten about half of the pork chop on his own, I used the knife to cut up the remainder of the pork chop into four pieces.  Not even thinking about it, I laid the knife across the back of the plate.  He picked it up and was trying to scoop the pork chop pieces onto the blade and get it to his mouth. CRAP--this really is happening!  So, I demonstrated how all of the utensils looked when I tried to "stab" the meat with them... the soup spoon, the teaspoon, the knife, and the fork... "Which one works best?" He chose the fork. Thank forken goodness!

So this is one "slice" of the images of his head--the dark bit inside the skull is a portion of what the stroke killed. The narrower skull is actually the synthetic bone flap/skull piece.  The schtuff outside of the skull is all the swelling and fluid build up.

And here's another slice a bit deeper.

Still waiting... No shunt yet‏

We are still waiting to get a call from the OR. The pressure is really bugging Wayne & the wait is bugging me!I'm on high-alert, constantly "testing" him to be sure additional decline doesn't go unnoticed. "Can you still move your leg? Does that feel normal to you? Are you OK? Count to ten with me. Copy my mouth & say your name. Are you OK? I love you. Are you sure you're OK?" That's what I like to call smothering mothering, or just ssss-mothering.Thanks for staying tuned & for all the positive energy I can feel around us--keep it coming. ;-)

Shunt to be placed

Wayne was admitted to Harborview last night.  I called 911 around 8:30pm because he seemed to be declining neurologically.  We were seen immediately at our primary care physician in the morning because Wayne was expressing concern about the fluid that was not draining but rather accumulating on his left temporal cranial area. 
I was mistaken with my idea that the plastic synthetic bone flap was solid--last night in the Emergency Department (ED), the Neurosurgeon explained the the pocket of fluid that wasn't draining was both pushing on the brain and on his scalp.  The fluid pushed on his scalp enough to begin to touch the top of his ear. The Neurosurgeon said, "I mean, that's an impressive amount of fluid."
So, they were thinking of "tap & drain" where they draw out the fluid with a syringe. Next would be to open the incision and place the JP Drain back into his scalp area. And most severe and permanent, would be to place a shunt.
The third option has been chosen by his Neurosurgeon.  He has not had anything to eat since Midnight in preparation for going back into the Operating Room (OR).  There isn't a time yet scheduled; the floor nurse that I talked to this morning stated that the OR calls them and tells Wayne's nurse/doctor when the OR is ready for him.
Our neighbor took care of Morgan and our new puppy Luna last night and into the morning. I'm heading into Harborview.  The neighbors are keeping Morgan for the day, and I just confirmed that my dad is flying into Seattle from Minneapolis tonight at 7:45pm.  Phew--that will be good to have someone here for Morgan, for Wayne, and for me.
I'll post more when I know more. He's on 4E Hospital at Harborview.
If anyone wants to help, here's some ways:
     come by and see Wayne,
     come hangout with me,
     I'll have Luna in the car with me since I haven't crate trained her yet, so you could come get her from my car & take her on a walk or hang with her at our house in Shoreline or your house,
.... trying to think of other ways and I can't right now...

I'll be in touch--thanks for reading our blog & for your continued positive thoughts and memories of Wayne, me, or Morgan that you send into the Universe.

EDIT/UPDATE: Luna is not in the car--she is at home and a neighbor is coming by to play with her and check on her. ;-)

Being Dissociated is Gr--... I mean Being DISCHARGED is Great!!

Wayne was discharged from Harborview this afternoon & is home resting. I forgot from the 2009 cranioplasty how swollen his left eye & cheek became 2 days post-op. He's excited to get out of the hospital & be home but is uncomfortable & in some considerable pain.
     He's doing well & I am glad he's home!! Plus, that means I don't have to go back & forth between Harborview & home. Thinking back to 2008 & how I was up by 7am & off to the hospital everyday ASAP... I have absolutely no idea how I did that. None. I couldn't even get to the hospital by Noon each day this time around!! No wonder I have a lot of feelings & memories that are coming up & being realized for the first time--can you say DISSOCIATION?!?
     Now whenever a moment, or a thought, or a comment is too stressful for me, one quadrant of my lip goes numb & it spreads rapidly down my chin & neck & I start to hyperventilate. That's what my body was doing this morning before I went to see him.
     Great defense mechanism, I guess, because it allowed me to handle the newborn that I had in my arms and the critical condition of my husband and best friend, Wayne Bacon.  But the result is I'm still dealing with things from the first 3 days after his stroke, and 2 months after the stroke, and 18 months after the stroke.  Mainly the first 4 or 5 weeks, but it's a weird way of living when you don't know when another memory will flood in and take over your body.
     Like the consent form at Harborview--it was such a defining moment to be reading over that on April 2nd, 2008 with so many supportive friends around me, my mom, my 3 week old daughter, and Wayne's mum on the phone... but now when I see a consent form at Harborview, I suddenly have feelings and memories and emotions that I didn't even know I wasn't dealing with previously but suddenly those memories and feelings are preventing me from dealing with the current situation!  I told the Neurosurgeon, "You guys should offer desensitization classes for that consent form for the spouses of craniotomy patients. That consent form carried so much weight (the night of the emergency surgery to remove half of his skull to save his life) that the image of that consent form is burned into my brain and I have to really focus to not dissociate when I see that form again."
     Onward and upward though, right?!?!
     I do everything I can to ensure that we enjoy life, that we focus on the moment, that we are grateful for the memories and togetherness that we have everyday, that we let go of the things that will not have a drastic effect on our path and journey...
...and that I just keep breathing, just keep breathing, **deep inhale**, **slow exhale**... Oh, hello there left lower quadrant of my lip, chin, and neck! So nice to have feeling in that area again.  Welcome back.

Scream for Ice Cream

I went to Harborview after I found someone to watch Morgan--didn't think she needed anymore scares about her daddy--and I'm pleased to report that Wayne is looking better. Not so nauseous, a bit more himself, and more responsive. I was choosing his meals for tomorrow from the available menu and he definitely had an opinion but he kept closing his eyes while trying to read the menu.  I think he is still in some considerable pain and seemed to just shut his eyes not necessarily to rest or sleep, but just to focus, breathe, and get through a wave of pain.
The lunch he was served today did not appeal to him--and I'm not even sure to whom such a sandwich would've appealed... maybe an emaciated dog scavenging for food.  The up side is, we at least know he's got his appetite back.  I asked if there was anything else the nurse could bring for him, and I suggested fruity ice cream; she brought two lil' cups of strawberry and raspberry ice cream and as she showed them to me and asked if these would seem okay, he perked up, waved her over impatiently, and grabbed them and started trying to gobble them down straight away.
The surgeons placed a "drain" in his head between the scalp and the bone/skull as they were sewing him up.  Generally, a drain is a tube that collects the blood from within the body under or near the incision and area of surgery. Where the tube is inside the body and not exposed, there are holes that suck-up all the blood accumulating in that area.  The suction is created by compressing a balloon type reservoir that is at the end of the tube (that the nurses place in Wayne's hospital gown's front chest pocket... how classy). When I got there this afternoon, the drain was gone from his head.  The nurse stated that it was there when she left for her lunch break but is definitely not there anymore.  That's a good sign--no unexpected amounts of bleeding or pressure building due to blood accumulating.
He also urinated a bit on his own in the late morning, but still didn't completely empty his bladder so they will be watching that today and tonight.
And by now you have figured out that he will be staying at Harborview one more evening, which is fine by me, and although extremely surprising to me, it seemed fine by Wayne too.  And if he's not getting dressed, demanding the discharge process be sped up, sneaking out, and escaping down the elevators, then it must be the right decision to keep him there for another night because if anybody is going to push the envelope, it'd be Wayne.

Is it normal to have a headache?

I talked with the nurse last night around 10pm and she said that Wayne hadn't voided any urine since the surgery, so they started him on IV fluids. He still isn't urinating on his own this morning, so that is something that the nursing staff will work on today.  They said he seems very dehydrated.
I called this morning to get an update from his nurse as soon as Morgan and I woke up, and I only got a brief update because she had to go and Wayne was asking for the phone--he is extremely nauseous and he seems to be in a lot of pain.  I do not remember this in 2009 with his previous cranioplasty but I also had an 11 mos old in my arms... and we were all elated to be getting the other half of his skull back into his head to cover up the remains of that left hemisphere. Sooooo, my memory could be skewed just a tad.
Even last night at 5pm when M & I left for home, he wasn't willing to engage... he could but seemed to want quiet, the shades drawn, and to be laid back down from being propped-up to eat his dinner (which he didn't eat either).
I'm not sure I'd go as far to say he's doing badly, but let's face it, when he was in the ICU and on death's doorstep I was stating he was "doing great!"  It doesn't seem as though he is in bad shape, but there are definitely some things that we need to get resolved today and I am a bit concerned.
It was the original plan and the intent of the neurosurgeons to discharge him today from Harborview. I'm not sure that's going to happen.
I've got to go get M & I ready to head into Harborview and exercise our new blue heeler puppy Luna before we head out, but I wanted to get at least some sort of update posted.
Thanks for all the positive thoughts and energy that you put out into the universe yesterday--I was frightened that he would "let go" once he was under the anesthesia, 'cause it has not been an easy road for him and can be so frustrating at times to not be able to express any thoughts or needs with words.  However, he is a fighter, he is loved, and he has a lot of love to give.  When M & I went into the Recovery Room yesterday around Noon, he was instantly reaching for and looking to console Morgan--SUCH a great dad!!!
We love you Wayne, and we believe in you!!

Wayne's Doing Great; We Are Happy & Relieved!!

Wayne's Doing Great; We Are Happy & Relieved!!

In recovery :-)

DOING GREAT! In recovery room & following verbal commands. (Morgan: you are going to be a photographer!... wait, you already are!)

SURGEONS ARE CLOSING UP SHOP

SURGEONS ARE CLOSING UP SHOP
Surgery has gone well up til now, they said they are sewing him up & the docs will update me soon.

BRAND SPANKIN' NEW HEAD

BRAND SPANKIN' NEW HEAD
Wayne's back in the OR now & Morgan & I are in the good ol' Harborview Cafeteria Surgery Waiting Room.

Friends come and go... and go

Email to fellow 'stroke wife':
 
1st year: Most friends stuck around for 3+ months & helped, but >3 months, they all began to fade. So I desperately tried to keep the friendships alive, stay connected. I tried to be 'more normal' around them, not talk about the stroke, or the hardship, or the loss and grief.
2nd year: I cried, was mad, felt more alone and abandoned than I did before from just the stroke. Didn't know I could feel more deserted than I already did from 'losing' my spouse & partner. I would contact the friends, expressed loneliness to them and to others, point-blank asked them 'why' they weren't returning my calls/texts/emails, but nothing changed. It actually got worse.
3rd year: I had completed the grieving of it, had enough waves of anger & grief & calmness. Then I was able to let go & then I could see the purpose of the relationships, the beauty in them, and bid them farewell and closed the book.
I've said many times, that it's not just the loss of the spouse that you're grieving.  It's the loss of friends, of the ability to be a working mother, of the familial relationships and dependability that you thought was there, the ability to articulate your ideas/feelings/basic thoughts.  The unexpected loss is the most painful—the greatest loss was my spouse's speech and functional capabilities.  However, I anticipated that my husband would never walk again, never talk again, never drive again--that's what the docs said from the beginning. Big, BIG loss--had a 3wk old daugther in my arms, and so much of what we wanted and always foresaw for ourselves was instantly gone.  It was painful … but never did I expect the loss of all of my/our friends. I never expected the loss of family members and having them blatantly state that they can't be there for you in the way you need them.
Now, my life has fewer friends, all 'new' friends, and I am so thankful for them.  They have chosen to be part of our new, complicated, full-of-reality life.  They are beautiful, generous, real, honest—wonderful people! They also only know my husband post-stroke, so there aren't any expectations, there's an acceptance, there's freedom and forward momentum in that.  I no longer feel tethered to that 'old life'—sad, but I had to let it go.  All of it.  I'm so sorry for the deep, deep pain that I know you are feeling right now.  Thinking of you—call me ANYtime!

Too...

Too painful, too traumatic.
Too blurry, yet too clear.
Too much with too little.
Too isolating, too deep.
Too real.

Too much unknown, too much wait-and-see.
Too few cairns for too long of a path.

Too draining, dissociative, depleting.
Too destructive, dispiriting, dividing.

Too young, too frequent.
Too many families having too much commotion.
Too much chaos becoming too normal.

Too much pressure to go unchanged.
Too many lessons, too much perfection.
Too much seems too important, when really there's not too much to get too stressed about.

Too short, too unpredictable.
Too many moments to try to freeze in my mind.
Too precious these moments without any words.
Yet, too lonely while sitting right next to "the one".

Too much taken for granted even though we were too aware of how quickly it can all change.

Marked Milestone!!!

Julie Bacon is a proud momma, wife, & stroke-wife survivor! Morgan doesn't have school today, I'm @work, & Wayne Bacon is watching Morgan today all by himself... & that in itself is absolutely amazing considering where we were 3 yrs ago, BUT what makes me inexpressibly GIDDY is that when I called to check on them at 11 AM, THEY WERE IN THE BATHROOM AT THE NORTHGATE MOVIE THEATER GOING TO KUNG FU PANDA 2 together!!! I am BEAMING!!!!! :)

and the reason I mention the bathroom is because even that is an awesome achievement or milestone for a dad to take his daughter into a public bathroom. three years ago on May 24th, he was discharged from Harborview... unbelievable.. leaps & bounds, Wayne Bacon! Leaps & Bounds!