The Loss of My Father, Friend, and Fiercest Fan

Merrill Dean Ronning

On August 18, 2020, Merrill passed away due to a stroke at the age of 75. He is preceded in death by his parents, Donald and Borghild Ronning, and his brother Donald. He is survived by his wife Anita, two daughters Beth & Julie, sister Ruth (Thom), brother Philip (Megan), and 4 grandchildren who admired their "Papa". Merrill was born on March 7, 1945, in Fargo, ND. He graduated from Oak Grove HS, Augsburg University and Luther Seminary, and was an ordained pastor with a call to Oak Grove HS as campus chaplain. He married Anita in 1969 and they celebrated 50 years with family last year. Merrill was a coach and a mentor to many, a lighthouse who guided others through darkness and life's storms, and a spirited court jester with intensity and heart. He impacted countless people with whom he came into contact and who he challenged, transformed, and bettered. In light of current events, a memorial will be held at a later date. Contact mronning@pm.me on how to send condolences.

The Right to be at Bedside

Today was the day you disappeared into your post-stroke world and left me ... to raise our daughter on my own, with you as a silent observer, to forge my own way in the world without your steadfast, ever-vocal support and firm belief that I could do anything. ... It's been 12 years since I heard you speak and boy do I still miss you. I miss your words of support and humor. Thank you for how you helped me to become even more "Julie" than I was when you met me. ❤️😘 I'll always love you, Wayne Bacon 😘❤️

In the current #coronavirus pandemic, I want to acknowledge the families that have lost someone. The despair and loss that I felt standing at the foot of his ICU hospital bed twelve years ago will never leave me. At 31 years old, I knew what it felt like to lose my partner and best friend and husband. But, at least I could be there with him, and grieve, and try to help, and have the freedom to walk away and cry, but then still be able to come back to him ... I think about how people are losing their loved ones right now due to the #COVID19 pandemic without being able to see them #OneLastTime or #WalkAwayToBeAbleToComeBack ...

I have been strict with my self-isolation and plead with others to do the same and #StayHome so that wives and kids and extended families don't need to say #DistantGoodbyes ... or actually, there is #NoNeedToSayGoodbye at all. Please ... Stay At Home. Consider that the impact is days, or weeks, on your life versus a lifetime without a parent for a child. ❤️🥰

Sparkle & Shine

I just got an early birthday present delivered to me. My heart is full. ❤️ Thank you to my sister, Beth, for the beautiful birthday present. ❤️
As you said in your note, regarding this being my decade to shine & sparkle... from the ages of 31 to 39, I faced a lot of loss. Like, ALOTTA LOT! lol
"Losing" a spouse who is physically still tangible is definitely a mind-bending experience, and all while having a newborn, losing our house, losing my dog that I had lived for 13 years, losing friendships, losing myself and my identity and core, losing my car, losing my five senses, losing my future that never had a chance to materialize or get traction, and so many other continual losses and new "points of injury".
Losing your spouse in every way but physical-existence in your 30s only to have him still be in your care (financially, physically, emotionally, mentally, will he ever walk again?, will he ever speak again?, it was up to me to find the best programs and therapies to fight for him, as I was his only and strongest advocate and he was my best friend, vocationally--I tried to enable him to be a "working man" again, passionately, epileptically (is that a word?), alcoholically, 2 time craniotomy/cranioplasty, rehabilitation-wise, ...) is like no other loss. There is nothing that prepares you to lose your spouse. Your dog will die in your life time, you know that at the onset of the relationship. Does that make it less of a loss? No. Your parents will die in your lifetime. We all know this is coming. Does it hurt and rip a hole in your life and heart to not have the person who loved you and knew everything about you? Yes. I cannot imagine how I will cope with the loss of either of my parents. *gulp* A loss of a sibling before their time would be heartbreaking and horrible. It would be like losing a limb or a connection to your past and a future with him/her woven through your lifetime.

But your spouse, oof. Your brain actually rewires itself when you begin a relationship; the person and your relationship and your daily "dance" hardwires your brain to function as a duo. So, he lost his right side due to the stroke, but I lost half of me the moment I found him on the floor. I could no longer function as I did just minutes before because my brain was not mapped to work as a solo-artist; I was part of a duo.

The loss of anyone is horrible. And grief is a difficult thing to work through and devastating to realize that it actually never ends. With the exception of the loss of a child--that would be like losing a lung and half your heart and half your brain and half of your existence, I feel there is a distinction between losing anyone but your spouse is like losing an extension of yourself. You still have your fully-mapped brain with which to work; although it may be foggy and a bit different, the majority of it still functions. With an "extension-loss", your spouse becomes your pillar, your safety net, the glue and the pothole-filler as needed for a stretch of time. You still have that special person laying in bed next to you at night. You still have that person who has an equally shared interest in your children. You still have your spouse to help you through parenting challenges, home life, taking the garbage out, paying the bills, mowing the yard, financial decisions, ...
Now, am I trying to define a scale of which loss is worse or better? I honestly don't think so and apologize for seeming to try to create such a "scale".

I am only trying to express my experiences and deep discussions with other "stroke-wives"/"pseudo-widows" and widows with whom I have walked the path to redefining myself, ourselves, as a solo-artist.

Death is definite, and closes the chapter. Most of the widows with whom I have met and befriended over the last 8 years have said, "I think you had it way worse." Most of them had a diagnosis, a window of time to have conversations and closure, to make decisions together, to say and hear what you want and need to hear. How grateful I would be to have one last conversation with Wayne--the full-brain, pre-stroke Wayne. The one who isn't at a comprehension rate of 35-75% depending on his recent seizure activity, current fatigue level, recent diet choices, sleep-quality, etc. And to hear him say my name again?!?! What a gift that would be. One speech therapist got him to say "Choolie" or "Zoolie" (can't remember now) but MAN did I bawl.

How grateful I would be for Morgan and I to have that closure. But, I am also grateful that he did survive and Morgan got to know him, even if it wasn't the "original him", but rather the "altered"/post-stroke him where more of the requirements of the father/daughter relationship fell on her. Oh how she aches, still, daily, for the loss of a father that she will never have. How she aches because she doesn't feel like a child should feel with her dad: safe and that there is an adult in control and has "got this". Frankly, because I was so devoted to his care and rehab and "saving" him (or trying to "get him back"), I wasn't a safe option either for several years. I don't think she felt like, "I'm safe--my mom's 'got this'!" Now, I also know that I did not neglect her, I challenged her, and life did not look "common" in anyway for that little girl (or me or Wayne). But, as my alanon-mentor illuminated for me, I was a far better mom to Morgan through all of the 'worst' years (2008-2015) than some moms who are still part of a functioning duo & has a spouse contributing.

And, finally ... Beth, I *know* you are right: My 40s are DEFINITELY going to be full of wonderfulness. 💞💗

👂🏼💍 Thanks for the ear bling 💍👂🏼 Here's to a sparkly & shiny decade!!! 😘

🎁🌞🌟💫✨🍸🍾🕯💡🎉🎈💝‼️✳️🚺🆕*️⃣🎶✔️🔝📢😊😚

I Didn't Leave ...

I loved Wayne.
....and I held on, and I held on, and I kept holding on.
....my body and soul and spirit started to waste away .... but ...
....I kept finding that one reason to hold on.
....I would have loved to have been "chosen" .... but ...
....then I wouldn't have re-found me....
#SelfLove
#RebuildingMe
#IAmEnough

Soul's Journey

Completely agree
...I was actually thinking earlier today, about how at a young tween/teen age I believed: as long as you listened to YOUR soul, & shut-out all the voices of OTHERS, you'd never "go wrong". You would always stay aligned with your soul's journey. You would never "misstep".
...that's how I feel about my journey. I don't regret any of my life. I don't feel like I've misstepped, or that I took a "wrong turn".
...I am who I am; I chose what I chose; I'm heading forward on the path before me. Each step isn't perfect nor am I; if a step or situation feels like friction, I adjust. I redirect. I now know how to create ‪#‎boundaries‬ .
‪#‎RebuildingMe

1st and Goal

It's my birthday tomorrow. I'll be 39. And I feel like I'm so close to being able to start a new line-drive. As of tomorrow, I'll be at the 10-yard line, and it's 1st down. Soon--very, very soon, I can start a new decade and not have to try to remember what yard line I'm at and where in my 30s I exist.

See, my 30s haven't been what I thought they'd be. I'm not sure anyone's 30s are what they thought they'd be for that matter. I know that I'd leave behind all the hopes and dreams of a perfect-pictured-life to just be able to remember my 30s.

I had just turned 31 when I became pregnant with my daughter, and I was still 31 when my then-husband didn't come out of our home-bathroom after his post-work-shower. For years, until this year actually, when I was asked my age, I'd respond with "31". I was frozen in 2008 for years. Everything, and I mean everything got put on a back-burner, except for imminent threats to the lives of Wayne, Morgan, or myself (in that order). Time didn't matter. In fact, time hurt. It was the enemy. If I knew how much time had passed, I'd know the window was closing on recovering my husband's speech and cognition.

Every moment was therapy, just like as a mom every moment was a moment for growth or for learning (e.g., creating depth to vocabulary, learning colors and animals, symbol recognition...).

Sitting on the couch nursing Morgan (5 months old) with Wayne about 4 feet from me, I'd test him. I'd ask for the "Remote. Re-mote." He'd respond with a puzzled look. I'd avoid directing him with my eye-movements or with any body language. "Remote." He'd grab the stapler that was sitting in front of him on the coffee table and hold it towards me with body language that said, "Is this what you're after?". "No," I said with a shake of my head, "Remote." He'd look around him on the couch, on the coffee table, and seemingly having an 'Ah-ha' moment with how he suddenly moves with purpose and even makes a noise that suggests, "Oh my gosh--it's right in front of me!" And, he reaches for ... the Kleenex box. As he begins to hand it to me, his look of "Task Complete? Check!!" turns to a look of extreme dismay and even fury at himself when he sees my shaking head and no smile--he didn't hear it right. Then I would use a hand motion and the word "Remote" while I pretended to hold a remote and use my thumb to press the buttons with an extended arm pointing directly at the TV. He'd grab the remote, hand it to me, and I'd praise him and smile and then repeat the word again, "Yeah! Remote," nod of my head with a big smile, "Remote."

Now, on the eve of my 39th birthday, I am present and am able to "see" myself in the mirror consistently, day-in-and-day-out, for the first time in 7 years. My five senses have returned and are not just teetering between functioning and shut-down. My brain was in such overload, that it seemed as though the 5 Senses created too much 'input' for it, so the brain just turned those off for the time being (2008-2013), until there was enough 'space' to compute the input coming from my 5 Senses.
At the beginning of their return, in 2013, experiencing a touch-sensation along with a smell-sensation was too much. Overload. Similar to a baby who has been overstimulated, the instinct was to arch my back, which naturally pulls your head away from the stimuli and lessens the effect. For instance, a shower was too much stimulation--so many sensations on your skin, on your face, then your hands and arms are doing all this physical work, and your scalp and hands have a LOT of sensory input happening.... and then, on top of that, there's a schedule and an order in which these 'tasks' must be completed. Too much. The smells. The pressure on the skin. The sounds. The memories (the shower is where the stroke happened). The exhaustion that would ensue after I showered was incredible--you wouldn't believe it. I don't. It would take me 3 hours to get everything done in the shower that I needed to do... and that was because I had to go at such a slow pace in order to not overload my brain and body. Baby steps. "Get your hair washed, and then take a break."

Now a bath! on the other hand! Oh my.... a bath.  Ahhh! : )  Hahahaha.... I didn't realize it until this past December (2014), but a bath takes away the sensations... completely submerging yourself in water removes stimuli: auditory & visual stimuli (because I'm laying down, eyes closed, water above my ears, just my nose and mouth are above the water to breath); pressure or tactile sensations (because it's constant and pushing on you from all sides); smell--nothin' but water is what I smell because this bath isn't to cleanse or shave... it's to deprive my body of input and any stimuli.

Birthdays are so important in my eyes.

It's the day on which that person was born, their path set into motion to later intersect with yours. If it wasn't for choices the parents made to have that baby, and the birthday person along their way in their life, our paths would not have intersected... and thus, your birthday is the day on which I celebrate you and how you've affected me and my path because you've intersected with my path. I felt this strongly about my birthday as well (....and my half-birthday.... yes, I still celebrate my half-birthday).

... but my birthday has sort of had to sit on the sidelines ... I can't expect a daughter under the age of 7 to plan a party or go out and buy me a gift. .... although, she did plan (i.e., plan=had the idea of) a surprise party for me last year. She is such a gracious, empathetic, old-soul of a person. She amazes me with her insight and how we can relate when there is 31 years between us.

And since I'm "present" this year, and not running-around reacting to chaos and trauma and "new points of injury", I can now "see" my birthday in front of me. And, I'm left ... a little bit .... sad. I'm not 100% sure why (hence, journaling on here at 11:30pm), but I think it has to do with wanting to feel important, to feel wanted, to feel 'seen', and recognized. Growing up I never thought I'd get married, but I did... and the 6 years of marriage pre-stroke (and the 5-years post-stroke) taught me that I really like having a partner and a companion and a friend and a lover. Turns out, I really like being married. Missing companionship tonight I guess.

I've never been one to wish a day away, and for sure not a full year!!!... but I'm looking forward to Forty. A new decade, a new sense about me, and a fresh field of 100-yards to tackle.

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!").