Tag Archives: Daddy

Grace Visits, Ali “Turns Back On,” and a Return to San Fran

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I haven’t blogged in a hot minute and I have no idea why. So much has happened and my memory is so bad, I really suck for not getting stuff down as it was happening. So this post will be a catch-up of sorts. I have events I should have documented, but I think the more interesting thing is how I’ve emotionally changed in the last month.

Grace Visits:

Around the 6 month anniversary of Daddy’s D-Day, Grace and Aaron came to visit. Before this visit I had started to see friends again but in very small doses. This was the first time we hosted guests for an entire weekend and I was very nervous. EVEN THOUGH Grace is my heterolifemate, the big sister I never had, and one of my top 5 favorite people on the planet, I was still nervous.

When I opened the door to her I was kind of shy and like “hey… here I am… still here… alive…” The old-Ali would have opened the door screaming and jumping for joy. But the new-Ali was all like “I’m broken. Please don’t judge.”

The weekend that ensued deserves its own post because it was so awesome, but for purposes of this post I cannot reiterate enough how incredibly restorative it was to have Grace here. We talked about Daddy and grief and how completely broken I am all weekend long. She and Aaron listened to me for hours and hours. And even though Grace hasn’t experienced a loss of that magnitude, I could see and feel her empathy for me. She knew my Daddy, she knows how important he is to me, she GOT it.

After I said goodbye to her I went to bed and had a huge meltdown/ugly cry. All I could do was sob about not wanting her to leave and not wanting to go “back to the life” before the Thursday night Grace came to visit.

In therapy two days later, we concluded that Grace is a very safe person for me. My first home was with her and her presence is immediately soothing to my soul. My therapist was so happy that she came down and allowed me to be my true self because that’s what I am around Grace – the real, raw, unfiltered me.

My reaction to her leaving after a 3 day visit reminded me of my last line in the toast I gave at Grace and Aaron’s wedding in my advice to Aaron: Wherever you live and whatever you do, wherever there is Grace, there will be your home.

I was afraid that when Grace left, she’d take the peace and ‘homeyness’ of her presence with her.

Ali Turns Back On:

When I went back to work after Grace’s visit, I realized that I was really… energetic. Like, more than the post-Daddy-usual. More like the old-Ali.

I was also laughing REALLY hard at things that were only moderately funny and getting really bent over things that weren’t worth it.

I even got excited about Booty Band coming back to The Social on 10/18 and organized a Facebook invite for friends to come to the show, which was followed by a panic attack because I couldn’t imagine seeing all those people but hey – the point is that I actually got excited and engaged with people!

The only way I can describe this feeling is that I seemed to come back to life, or “turn back on.” Like, prior to Grace’s visit, I was completely shut down. And then after Grace’s visit, I booted back up. I described this in my last post:

I compare myself to a computer that finally finished downloading and installing a new OS (Sudden Daddyless Daughter v1.0). I’ve rebooted but everything is all scrambled. Programs have to be reinstalled. Login and passwords have to be changed. The poor ol’ box is confused and has to reconfig everything.

Basically my emotions are back up and running for the first time but my system is all scrambled. And even if the emotion I’m feeling at a given moment is appropriate, there’s a chance I’m feeling it too strongly or not strongly enough for the situation.

Now that I’ve had even more time to reflect on this sudden onslaught of emotions, it’s more like this: I’ve realized that *I* am more than *my grief.*

Or said another way – A portion of my psyche is now able to do things other than grieve, and it is doing everything all at once.

If you’ve ever read Hyperbole and a Half, the last four weeks have been my corn moment.

Return to San Fran:

I was doing so well, progressing so nicely, and then I found out I had to return to the scene of the crime for work.

I *knew* going back to San Fran was going to be hard. I anticipated an onslaught of emotions, specifically in that freaking airport where I had to call my Uncle to tell him his younger brother died.

I did NOT expect to have a complete melt down and panic attack when I got to the area I spent so much time waiting on that last trip. But I did. Thankfully it didn’t last long.

Overall it was another quick trip (and another event worth its own post, especially my time at GooglePlex), but I got to see Timmy and retrace a lot of steps from my last trip – this time without anyone dying back-home.

I did get to see Timmy again and I realized something so profound that I actually had to kind of put a disclaimer on it over drinks: The Alicia on September 18th was not, outwardly, a whole lot different than the Ali from February 20th.

So what’s the point of this post again…?

Tuesday was 7 months since my Daddy died and I didn’t fall apart. In fact….

I spoke to Carrie on the phone last week and she said “I can hear the difference in your voice! You sound so much better.”

Mia heard my plans for the fall and said “Uh oh… Alicia’s comin’ back to life!”

Grace’s text to me when she landed safely in NY was “I’m reassured to see first hand that you are still the strong person you were before.”

I hung out with Tim and Jon, and had to tell both of them something along the lines of “I know I don’t seem very different to you but I’ve had to work on myself a LOT in the last seven months.”

So the point is this: I’m getting there. I’m getting better. The old-Ali of “before” and the new-Alicia from “after” are starting to align. I’m learning how to work grief into my everyday, new-normal life. 

But I’m not done yet. I have a new edge to me that I find is even snarkier than “before.” My general ‘give a fuck’ filter is starting to turn back on so I’m not telling people, completely unsolicited, how little what they do matters  in the grand scheme of life as often as I was. I’m trying to push down anger and promote joy.

And yeah – 7 months.

  • I feel amazed that I can see around my grief right now. It seems so soon. Too soon.
  • I expect to have relapses for, well, ever.
  • I can’t imagine the 1-year anniversary. I just can’t. It hurts.
  • I miss my Daddy. Like, good ol’ fashioned MISS. His voice, his laugh, his advice, calling him when something awesome happened and hearing how proud he was of me. The way he would say “very nice,” and “beautiful!” when I got recognition in work or scheduled a cool vacation. I miss my Daddy so much.

To the future-Ali(cia) who reads this I just want to say: You’re doing great. Don’t freak out about how quickly you’re starting to get back to normal. It’s not disrespectful to your Dad. And I know, I just KNOW, that he is absurdly proud of you for how you’ve handled this.

The Mother Effin’ FEELS

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Six months since I lost my Daddy.

Three months since I started therapy.

One month since I brought Mia home.

And about two weeks since I noticed I was FEELING things again.

Feels. So many feels.

When I say “noticed I was feeling…” I mean the following:

  • I feel something,… but I don’t know what.
  • I feel angry and am not sure if it’s justified.
  • I feel sad, and I absolutely know that’s justified.
  • I feel happy! Like, carefree!
  • Now I feel guilty for feeling happy…
  • But how can I be happy, if reality is my Daddy’s dead? Now I feel stunned and confused.
  • I feel so many things right now, there is no one discernible feeling I can identify.

And that shit is exhausting.

I mean that literally, by the way. Feeling things, rotating emotions like cycling through a fucking rolodex in your heart, will wear you out.

The worst part, I think, is genuinely NOT knowing WHAT I am feeling. It’s like waking up and truly having no idea where you are.

As I told my therapist, there are things I expect to not know, like… the future.

But I kind of expect to know what I’m feeling at a given moment.

That, however, is not a luxury I am provided at this stage of the process.

I compare myself to a computer that finally finished downloading and installing a new OS (Sudden Daddyless Daughter v1.0). I’ve rebooted but everything is all scrambled. Programs have to be reinstalled. Login and passwords have to be changed. The poor ol’ box is confused and has to reconfig everything.

Basically my emotions are back up and running for the first time but my system is all scrambled. And even if the emotion I’m feeling at a given moment is appropriate, there’s a chance I’m feeling it too strongly or not strongly enough for the situation.

And so I throw myself into my work, I hoop my ass off, and I started doing other things too. And not just on auto-pilot or by force (see: most of the posts I’ve written lately). I mean, I am actively participating, present, and accounted for.

For example:

  • I saw a movie, IN A MOVIE THEATER!
  • I bought a new freakin’ car!
  • I had friends come stay, in my house, for many days in a row and we went to Blue Springs to swim and got pedi’s and drank beer and laughed, a LOT!
  • I drafted this post, saw my erroneous tense changes and other grammatical errors, and PUBLISHED IT ANYWAY!

But with great feelings, come great burdens….?

(yes I just made that up, whatever I needed to break this post up)

However, my Daddy and his sudden loss were in the back of my mind almost the whole time.

While I might take solace in feeling good (read: any) things again, I must also deal with feeling very deep, bleak things. Painful, awful feelings that I experience stronger than ever.

I described my grief to Grace last weekend and it went like this:

The girl I was before February 23rd died with her Daddy. That Ali was naive and so blissfully ignorant of true devastation and pain. This new me, well, I know now how truly dark life can be.

This new me has a hole in my heart and it is huge. It’s this giant, gaping, empty hole and my subconscious spends all of its waking moments dancing on the the edges of that hole. Sometimes I fall in and those are the times I cry so hard I feel like my heart is being ripped out and I don’t think I can ever be anyone besides That Girl Whose Daddy Died Far Too Young, Far Too Suddenly, While She Was On The Other Side Of The Country.  Otherwise known as The Girl Who Lost The Person Who Loved Her Best. Or, The Girl Who Lost Her Only Parent That Cared.

The good news is that I don’t live in the big, dark hole… anymore.  I’m giving myself permission to fall in, on occasion, and therapy is helping me remember how to even WANT to come out.

(Side Note: I’ve spent days, weeks, months even, hiding inside of that hole and refusing to come out. There’s something about the pain that becomes comforting after awhile. In a way, the pain becomes a symbol of how much you loved that person and how deeply you grieve them. And it’s very hard, sometimes, to let it go.)

My therapist says I’m one of the lucky few who have enough self awareness to recognize these things, and it’s up to me to choose what to do with this new awareness.

For what it’s worth, I haven’t chosen yet. Right now I’m marveling at what it feels like to feel again. It’s overwhelming and disorienting, but the old me loved life so much,… to feel strongly about things again, in a way it feels like coming home.

And hopefully as a result my next few posts about life and activities won’t feel quite so forced.

Five Months Later

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February 20th my Daddy called an ambulance to take Mia to the hospital. Her flu symptoms were just too bad, and he was just too sick, to go through standard doctor or urgent care routes.

Almost exactly five months to the day later, July 18th, I’m going to be bringing Mia home for the first time.

I wrote about so much of it in the first couple of months. I don’t know how I did it, how I found the time even. But I’m so glad I did. The facts have gotten so fuzzy… the raw feelings and emotions have started to become ever so faded…

The last post I wrote about Mia and the home-health-situation was April 26th. It was the Brace Yourself: Good News is Coming, and it covered Mia waking up, talking, and being moved back to Kindred to be weened off of her ventilator.

A LOT has happened since then. The highlights:

  • Mia spent six weeks at Kindred and improved faster than we ever could have imagined: Within weeks she was completely off of her ventilator, her trach was removed, she started eating real food again, and she started medication to help her handle anxiety.
  • We were kicked out of Kindred and transferred to the WORST rehab and health center on the planet: Because Mia was on isolation when her Kindred-expiration date came, we were sent to Rockledge Health and Rehab at the last minute. It was HELL. That link is my Google review and it says it all. The craziest part is that I was with her for the move from Kindred on a Monday, then went to Jupiter to trade vehicles with Corey after work two days later on a Tuesday, which I followed-up with the Cher concert on Friday, and by Saturday I was back in Merritt Island to oversee her move out of that hellhole. No words for the exhaustion…
  • Our transfer to Health Center of Merritt Island happened, and the rehab got REAL: When Mia left Kindred on May 12th, she was juuuust starting to be able to use her hands with enough dexterity to feed herself. When she got to HCMI on the 17th, she was lifting her arms really well but couldn’t reach above or behind her head. Only one month later, on June 20th, she walked 50 feet with a walker.
  • We spent Daddy’s birthday together as a family: This was the first time all four of us had been together talking, laughing, and STANDING, in 5 years. It was an incredibly hard day for me but we were together and healthy, and that helped.
  • And since HCMI is only 5 minutes from Daddy and Mia’s house, I started a consistent schedule commuting to and from Merritt Island: For the last two months I’ve spent two or three nights a week in Merritt Island, going after work to check on the house, get mail, hang out with Mia and talk, do her laundry, and make sure things were still up and running.I would love to say this was easy-breezy, but it meant a LOT of time doing laundry, eating Publix subs, buying and exchanging clothing and shoes for Mia to wear during rehab, making questionable changes to Daddy’s cellphone plan to get Mia access to Facebook in rehab, and one special night casing the house at 10pm to find out why the waterlines had been shut down (long, long story).

And now, here we are five months since this all started, and Mia is coming home.

She can walk so very well now, still using a walker but it won’t be much time before she can ditch it. And emotionally she’s in amazing shape. We’re still grieving over Daddy, of course, but she has a very different outlook on life now and it’s wonderful.

So Friday we start a new chapter, together once again. I’m honestly terrified. I don’t know how I will be able to leave her in the house alone, not to mention let her drive! And I have no idea how she will react to being in the house with Daddy’s ashes, or how she’ll be in the house without him.

I’ll be with her the first week out of rehab – June 18th through 22nd. After that, Corey should be back up for two weeks and then Cari will be back down for one week. And then who knows?

Wish us luck!

All of us, standing together, on Daddy's birthday.

All of us, standing together, on Daddy’s birthday.

One of my favorite Daddy-Facebook-interactions

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A couple of years ago, during peak political season, Daddy met Vince, Uncle Dan, Uncle Bob, and myself at Rusty’s in Port Canaveral.

(If you didn’t know, Daddy and I were on TOTAL opposite ends of the political spectrum. Our political Facebook arguments are seriously legendary and could end up 30 comments deep with multiple factcheck.org and snopes.com references.)

He didn’t know how to work his fancy smartphone but he wanted a picture of us on it, so I handed it to Vince who took the photo and then I uploaded it to Facebook for Daddy.

I captioned it for him “Me and my socialist daughter. I love her.”

And then the comments poured in and every time I look back on them, I LOL a bit, and then feel super loved.

That last comment.

That last comment.

My Daddy loved me and was proud of me. I have it in writing.

Therapy does NOT suck

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Some people might say therapy is too private to blog about. Some people might be right.

But for me, writing is how I process things and lately it’s how I remember them, too. So I figured I would write about the few therapy sessions I’ve had so far.

Before all of this started, back in September of last year, I started seeing a therapist in Altamonte Springs to deal with one of my life’s biggest loose ends: My mom. I spent a good three or four weeks researching therapists and settled on one near my house, we had like… maybe 8 sessions,… and then I started working on the other side of the planet and had to stop seeing her.  It didn’t really bother me that I stopped going because I felt like working through my mommy-issues was a ‘nice to have.’ So after a brief foray into therapy, I quit.

Then February 2014 happened.

After panic attacks and melt downs and living out of my car to go from Altamonte to Melbourne and Merritt Island to Orlando, I decided I needed professional help dealing with my new life.

And three months after starting this journey, I found Anna. And after two really awesome sessions, we’ve declared the following:

    • I’m not on this journey without Daddy. In some ways he’s actually a bigger part of my life now than he has ever been.
      Don’t get me wrong, my Dad was a HUGE part of my life before February 23rd, but not a huge part of my day-to-day living. We talked at least once a week, often times days in a row, but I had my own life and he had his.  Well, the last four months that has all changed. Daddy is on my mind always, and now I know his life better than my own.

      Anna has really helped me realize that while he may not physically be here with me to embark on this crazy journey of grief and sadness, he’s still a huge influence on my life – now more than ever.

    • “Everything happens for a reason.” While there will NEVER be a reason good enough for my Dad to have been so cheated out of life, there may be a reason I’m experiencing this loss, and going on this journey, at this time in MY life.
      This one has been really hard for me because so many things seemed to happen at JUST the right time, but I absolutely refuse to believe there is a reason for this that’s worth my Dad’s life. But so many things had such fortuitous timing: Joey living with us when we needed someone to watch the house and kitties for weeks on end… my new job being a mere 45 minutes from my Dad’s house… finally having a salary and vacation time that afforded me the breaks I needed to take care of family business…

      It’s like a symphony started playing their instruments one-by-one last October and a melody has emerged. Now I just have to listen to pick up the tune.

    • My emotions are raw, which means I don’t have much of a filter, and it’s okay to avoid friends right now.
      Before this happened I had the same filter everyone has and I was able to bury, hide, or otherwise ignore minor grievances. Now, I’m so emotionally taxed that I simply don’t have the wherewithal to push down any beef I may have with anyone – including people I loved most.

      In the meantime, it’s okay to avoid people or hide. It’s okay to start small. People who love me will be there when I’m ready to emerge. Some people will just be there the whole time. Which leads me to one of the biggest realizations I’ve had to date….

  • Loss recognizes loss. While no one will ever truly understand my specific journey through grief, those who have experienced a loss will understand the pain and the process.
    This one means that I’m not alone. I’m not alone. One more time: I am not alone. Sadly, anyone who has felt this pain or had a loss of this magnitude understands what I’m going through and they know.  After months of feeling isolated or understood by only my siblings, I now know: I’m not alone.

I’m not sure I’ll keep writing about therapy but I thought these lessons, or take-aways, were too good not to put down. They may seem like no-brainers to everyone else, but these were HUGE realizations for me. Each session is so exhausting, but when I walk away with a new perspective, it’s *so* totally worth it.

And now that I’ve gotten this out… maybe my next post will be about something fun. Like my sick bedside tables from Adjectives. 😉

Daddy's Playboy Cards

The things that have made me laugh recently

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If you’ve thought the last almost-eight weeks have been nothing but depression and sob-fests over in Ali-land, you would not be far off. This has been a seriously bleak time.

But despite losing Daddy and being thrown into a logistical nightmare that includes commuting from Merritt Island to Orlando and Melbourne, seeing Mia ride a roller coaster of healthcare, and picking up more dog shit than I ever wanted to see in my entire life, there have been a few really bright spots in all of this.

And so, to change the tone on this site for just a brief moment, (and I do mean brief), I’d like to tell you about some things that have made me laugh…

    • When we thought we were going to lose Mia only a week and a half after Daddy, I stood in her room brushing my hair and I was almost knocked over by feeling my Dad’s voice in my heart saying “This woman can’t even give me two weeks of peace in the afterlife?!”
    • When we saw Mia in ICU and she was finally able to respond, I pulled out Daddy’s iPad and asked her who she was posing with in a photo from 2010. It looks like some random band dude and we couldn’t place him. She didn’t answer WHO he was. But when I said “He looks like he parties… does he party?” Her eyes got wide, she nodded big, and mouthed “OH YEAH!”
    • I knew Mia and Daddy were gun enthusiasts and we had a good idea that they were “preppin’.” But none of us knew the spare guest room had been converted into a full-blown bunker and that there were guns and knives stashed in nearly every available surface. When we found our 6th handgun in a box at the top of the closet labeled “Photos and Important Documents,” we had to laugh.
    • Daddy installed a wall safe in the house. We had to look EVERYWHERE for it – under every photo, behind every piece of furniture – and the only reason we even knew it existed was because we found the instructions to install on the surface of the “bunker.”  It was behind a pretty big picture and when we took it off, it’s clear Daddy missed the studs in the wall at least twice before finally getting the right spot. Oh to imagine his frustration with that… 🙂
    • Cari went to see Mia a few nights ago to say goodbye before heading back up to North Florida. I forget what Cari said to her, but I’m sure it was something sweet like “make sure you get good rest for me,” or “I need you to calm down so you can get better.” Mia mouthed, quite clearly, “Shut the fuck up.” hahahaha!!! (She mouthed “I love you” later to make up for it, but it was still hysterical.)
    • We found the original drafts of their wills that clearly state “it is recommended that wills be drafted for each spouse at the same time, with all children in mind, to prevent sudden onset of Wicked Step Parent Syndrome.” LOLWUT?!
  • I’m starting to plan Daddy’s memorial and thinking of stating, “in lieu of flowers, please make donations in his name to the National Rifle Association or The Republican National Committee. C’mon, you know it’s what he would have wanted.” No, seriously…
  • And finally, we found Daddy’s Playboy Club and Casino membership cards, with little bunny stamps marking each month he went to the club, from the years 1975 through 1982 – yeah like, eight freakin’ YEARS! And I was born in 1982!! Daddy!!
Daddy's Playboy Cards

Seriously Daddy?

And oddly enough, there’s been a lot more. Cari and Corey, Vince and Cliff, my Uncles, even (and especially) my co-workers; everyone has kept me laughing. Sometimes that laughter turns into tears, sometimes tears turn into laughter.

But there’s not too many memories I have of Daddy that don’t end up making me smile.

The roller coaster is moving faster than I can blog

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Yeah. This roller coast is moving far, far too fast for me to keep up with on this blog.

What roller coaster, you ask?

The one my family got on when Daddy and Mia got sick. You know, the one that keeps going up and down and twisting and changing directions faster than I can process. The one that is my life and emotional state of being right now. That one.

So where was I?

Oh yes. We’d been told it was time to let Mia go, and we were preparing to do just that. Here’s how that roller coaster went…

Hurtling Downward: Making the Decision
First, let me start off with the emotional hell one experiences when facing that decision. It is, without question, the worst decision you can ever imagine. Add to it the fact that the life in question belongs to a woman who is only 59 years old, your only remaining parental figure, and she can look you in the eye and recognize you when you’re in the room with her.

Her doctors explained that she was suffering and the continued effort to keep her going was well outside of her medical directive and wishes. But what do you do? She’s alert, for gods sake.

Do you ASK her if she wants to be taken off of life support? I compared that to being asked if I wanted to get into a car that I knew would end in a firey crash – my answer, what I expected hers to be should we have asked, would be giant “HELL NO.”

And so the next thought is, well… okay… if she says “no” she doesn’t want her plug pulled… do we tell her what her life is going to be like? Do we drop the Daddy-bomb? Do we tell her that she will never walk again? Do we explain that laying in this bed, with this trach, is likely as good as it gets? And after we do that, how much time do we give her to change her mind from “no” to “yes?”

Which leads to the logical conclusion of DO NOT TELL HER. Just gather around, explain about Daddy, and tell her we’ll always be there and we love her and everything is okay… and let her go.

And so that’s what we planned to do on Friday, April 11th.

Corkscrew Twists and Turns: Scrambling for Finances
The second worst part of letting someone go is worrying about how you’ll “take care of them.” I think we all know what that means so I’ll skip the details.

We were able to take care of Daddy because we had Power of Attorney for Mia and all of their bank accounts were shared so there was plenty of money available for us. But when Mia goes, all access to all accounts will be shut off and everything will go into Probate.  We already have a probate attorney from losing Daddy, but the process still takes anywhere from 6months to a year.

Not to mention, Mia had all of Daddy’s life insurance funds coming in and both Cari and I needed access to those funds to ensure everything keeps running at the house.

So in a seriously epic two day period, Cari, Corey, and I coordinated a state-wide effort to shuffle hundreds of thousands of dollars from Mia’s accounts into a new, shared one for us so that should anything happen to her, we would be able to take care of her, the dogs, and the house while everything else went through probate.

I’ll blog about “Advice to People with Children or Parents or Pets or Assets or ANY Loved Ones At All” later, but for purposes of this conversation just know that we HAD to wait until after 9am on April 11th to let Mia go to ensure we would have the funds available to take care of her.

Climbing Back Up: A Miracle? 
The doctors called Cari on Sunday, April 6th and encouraged her not to wait until April 11th. They said Mia was suffering, her body was breaking down, and the waiting was unfair to her. Now, he said all of this VERY nicely, but he was being honest and giving us his honest opinion.

Well, letting her go on April 6th wasn’t an option. We had to wait til the 11th.

So on the 8th, Cari and Cliff headed down to Melbourne from Pensacola, and on their way they got a call…. not that Mia had died before we could get finances under control, or that she’d gotten even worse. Oh no. This roller coaster was heading up – the call was that Mia was doing REALLY WELL.

Cari, Corey, and Cliff went to see Mia that night and it was like a miracle had happened – she was mouthing complete sentences (something she should have been able to do weeks ago), she was moving, she was more alert than she’s ever been and she was answering EVERY question they asked her.

Considering the best night she’d had to-date was answering 4 questions in a 3 hour period, that was seriously effing miraculous.

I went to see her Thursday with the other three kids, on the 9th, and it was like someone had suddenly woken Mia up. It was UN EFFING REAL. Her eyes are wide, you can tell she is TOTALLY, 100% “in there,” and she is responding to everything.

Hanging On Tight: Planning for a New Direction
Now we’re back into planning Mia’s long-term health care. So is the hospital, actually.

She’s being weened off of the ventilator as we speak, and there are all sorts of tests on the horizon to figure out why she still can’t move. It could be muscular, it could be nervous system, we don’t know but we need to find out.

But most of all we are taking things one HOUR at a time, planning for every possible scenario, and holding on to anything stable as tightly as possible.

More on Mia

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Once again there are too many details about Mia’s health to share in one, or even five, Facebook status’s. And so I turn to my blog to share the news.

Where I left off:
Mia was safely moved from Cape Canaveral Hospital to Kindred in Melbourne.

Things were rough when Mia first arrived at Kindred. Cari was in town to oversee the move but had to head back to North Florida the next day and though she was the first of us to see Mia in Kindred, her last visit wasn’t great. The move took a toll on Mia and what little responsiveness had been gained during the last two days in Merritt Island were soon gone.

That’s when I started my 11 day shift at Daddy and Mia’s house.

There are many reasons why we want at least one of us to be near her, but the reason someone has to be in the house morning, noon, and night is simple: Elmo and Cooper, 14yr old dachshunds, brothers from the same litter, who are just as devastated by the change in our household as we are.

And so Mia moved to Kindred, I moved to Merritt Island to take care of the dogs, and Cari and Corey went home.

Improving at Kindred:
My first weekend at the house was super lonely so I ended up hanging out with Mia at Kindred pretty much all day. I did her hair, massaged her, got her iPod a little speaker set and turned up the music that she’s so known for loving.

And slowly she started to get more and more alert. But she was also having a LOT of stomach issues.

This is when I realized how incredibly critical it is for your body to “evacuate.” Her colon shut down and the pressure of a very full stomach (being fed through a feeding tube) was causing her to take shallow breaths due to pressure on her diaphragm as well as for the lower part of her body to get poor circulation. The reason I massaged her so much was because her feet were starting to turn blue on the bottom. Things were looking kinda rough.

Kindred  did her right though. They stopped the food through her feeding tube, started IV supplements, and again she started to become more alert.

Monday, March 24th was a good day for her. Maybe even her best day.

Her stomach issues had worked themselves out, her hair looked good, her circulation started again so her feet were nice and warm and pink. She still couldn’t move her hands or legs, but she was pressing down with her shoulders and moving her upper arms. She had her music, and we talked.

I asked her if she was scared. She nodded.

I asked her if she was mad at us for putting her through this. She shook her head no.

I asked if she wanted me to leave. She shook her head no.

I asked if she wanted me to shut up. She didn’t reply. 🙂

When she nodded ‘yes’ to being scared, I said “okay I can fix that. I’m going to tell you everything that’s going on with you!” I’d noticed her straining to hear what every nurse and doctor was saying while in her room so I started from the beginning.

The only thing I left out was Daddy. I never, ever mentioned Daddy. And Monday the 24th was a great, GREAT, day.

March 25th – Panic at Kindred:
I practically floated into Kindred the next night after work; I was just SO excited to go see Mia.

But when I got there and she saw me, she started trying to talk to me. I asked her if that’s what she was trying to do and she said yes. Her blood pressure shot up to 188/100, her heartrate hit 100, and her breaths per minute (which the machine had set to 18) were hitting 50. She was breathing so hard that she was pushing air around her trach. I truly believe she was trying to ask me about Daddy, and again I danced around discussing him. The result? She completely panicked.

It was awful.

She was freaking out so badly that they couldn’t get her sedated fast enough. I asked her again if she wanted me to leave and she shook her head ‘no’ but the nurses eventually asked me to do just that.

And so I didn’t see Mia Wednesday or Thursday. I waited until my birthday, Friday 3/28, to go back and that time I went with Vince.

March 28th – Kindred can do no more, and a move to Holmes:
I stopped by Kindred on my birthday it was supposed to be a ‘pop-in, pop-out’ visit. We just wanted to say hi and not cause her to panic.

Instead we saw her before she was moved to Holmes Regional because Kindred said she was simply too critical for them. She’d had a bad morning, her blood pressure bottomed out, her cO2 levels hit 74 (a normal level is in the mid-30’s) and she had to be sedated and paralyzed to keep from having intense panic attacks and anxiety.

The day after my birthday, my second full weekend in Merritt Island, I went to Holmes to see her and she was right back to square one.

The ICU at Holmes is *great* – but Mia had no idea I was there. She responded to some sounds, but all the progress we made was gone.

MRI’s, EEG’s, and the call we didn’t want to take:
Mia has a great staff at Holmes and they were just as curious at her inability to move, nod, track with her eyes, or respond with any consistency as we were. And so they scheduled an EEG and MRI.

In the meantime, she went back on her feeding tube and started bleeding in her GI system.

And Thursday Cari and I took a call from the neurologist who combed through her results… and it was the second worst phone call I have taken.

Basically the facts are these:

  • There is no clear area of brain damage but there is evidence of diffused brain damage, spread throughout – that is likely due to a lack of adequate oxygenation.
  • If her brain were the only issue it’s possible she could recover over a 6 to 8 month period but even then it is unlikely she will ever be able to walk and she will have to re-learn everything.
  • But her brain isn’t the only issue. Her lungs are not improving and her GI system is bleeding.
  • This means that not only is there a lack of adequate oxygen getting into her blood, but since she’s bleeding out there is a lack of blood getting to her brain.
  • She’s on the best antibiotics known to man and she still isn’t showing signs of improvement.
  • Her body is simply not supporting her brain any more.

And so today we were told to think about what we wanted to do… and when we’re ready, if we’re ready, we will request we move to Mia into what’s called “Comfort Care.” They will make her comfortable, make sure she’s not in any pain, we can talk to her, be with her, tell her about Daddy and say goodbye for the last time, and let her go.

It might take hours, it might take days. But we can, and likely will, ultimately make the decision to stop putting Mia through this struggle only to bring her into a brain and body that will never be what it was, and only continues to get worse.

Though we expected this, hearing it all was still so… shocking… heavy… intense… horrible.

I can’t speak for Cari and Corey, but as for me:
The only way I’m getting through this right now is by reminding myself that it’s not about the life we will be taking away from Mia, but the suffering and indignity we will be sparing her. She won’t have to communicate with only her eyelids for years on end. She won’t have to eat and breathe through a tube. She won’t be bedridden and get sores or painful infections. She won’t be trapped in a body that’s failing her. She won’t survive, but we won’t be taking away her life.

This whole time I thought my Dad was getting cheated from the grieving he fully deserves because I was so focused on Mia. But now I feel like she’ll be cheated because I am so numb from Daddy.

And that’s that.

Until next week.

My last birthday card from Daddy

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Today is my birthday. It’s the first one where I won’t get a call from my Dad. I should have already gotten a card because he liked to send them early.  He was never one for writing his raw thoughts (like me), but he did know how to pick out a card. This is the last birthday card I got from Daddy:

————–

My Daughter

If I could gather up
all the smiles, laughs,
memories, and pride
that you’ve brought me
through the years
and give them back to you,
I would.

Maybe that way you’d understand just what it means
to have a daughter like you
and why you’re one
of the most important things
in the world to me.

Alicia,
No one could ever
love a daughter
and believe in her more deeply
than I love and believe in you.

Happy Birthday
Love,
Daddy & Mia

—————

I miss you, Daddy. I miss you every second and with every breath. I love you. You’re my Daddy and my best friend and my favorite person. Always and always and always and forever.

A Lengthy, Detailed Update on Mia

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Since so many people have asked and the details are so vast, I thought I’d write out a full-length update on Mia’s health in chronological order. This is long, but it’s thorough and pretty interesting if you’re interested in that sort of thing…

The Beginning: The Flu and Ventilator
Mia got Type A Flu around February 16th. She was admitted to ICU on February 19th and she was incubated/put on a ventilator to assist with her breathing after not responding well to the by-pap machine on February 22nd.

(And by “not responding well to the by-pap” I mean “taking her mask off and throwing it at the nurse because she was agitated and hated it.” That’s our Mia. :))

Now, you and I get about 21% oxygen from the atmosphere. The pressure that our lungs and diaphragm extends to bring that air in is roughly 5 “Peep.”

Mia spent 19 days with a tube down her throat and most of that time was spent with a ventilator delivering 100% oxygen to her lungs at 15 peep – the highest settings the machine has.

She was breathing short, shallow breaths against the machine, so her lungs weren’t absorbing the oxygen as well as they should have and she was also out of synch with the ventilator. It was pushing a breath in while she was pushing out. The ventilator was supposed to help her rest, do the work for her, and allow her to fight off the flu and pneumonia… but she subconsciously fought it every step of the way.

The Middle: Pneumonia and Sedation
Because she was fighting against the machine so hard, and to help her chill out enough to allow the ventilator to do the work for her so she could fight the infection, Mia was heavily sedated from the get-go. This is why she didn’t know about Daddy… it’s probable she still doesn’t really know… we haven’t gone out of our way to bring it back up.

When she was on the by-pap, they gave her Morphine and Advan. When she was put on the Ventilator, it was Propofol (the drug that killed MJ). Then, when her breathing was so out of synch with the vent, they put her on a paralytic to completely paralyze her body so no muscle could fight against the machine – nothing, nada, not one movement.

Now, when you’re taken off of Propofol, you usually wake up pretty instantly. Mia… didn’t. Her eyes opened, she stared straight ahead, but she didn’t move. It looked like the lights were on (barely), and no one was home.

Those times she was taken off of all sedation were called “Sedation Vacations” (yes, I asked if I could get one, only the inverse… I was denied) and it was during one of those breaks that we told her about Daddy.

That was Wednesday night, March 5th.

At that point her doctor told us she wouldn’t survive a tracheotomy, that none of her metrics were moving in any direction let alone the right one, and that her major systems (like, kidneys) were starting to slowly fail.

Looking back, if we were going to ‘pull the plug,’ then that would have been the night to do it. Her doctor said that if she made it through the weekend with no movement in the right direction, then Monday, March 10th, we would discuss making that decision.

The Turn-around: Clearing Up and Getting a Trach
I swear that night I felt Daddy ask, jokingly of course, “This woman can’t even give me two weeks of peace in the after-life?”

And damn if she didn’t start turning around for the better on Thursday, March 6th.

The ventilator’s oxygen output was dropped to 70%…. then 60%…. then 50%. Then her peep level started getting adjusted down… her cultures came back that she was negative for the Flu, her kidneys picked back up, and she started maintaining her own heart-rate and blood pressure again.

On Wednesday, March 12th she was cleared for, and received, a tracheotomy.

For the first time in almost 20 days we were able to take her completely off of all sedation and see her entire face. And because she has a trach, there’s a line in her chest where nurses can pull out the gunk that you and I would normally cough up after a bad bought of pneumonia. Gross but awesome. Finally, she was heading in the right direction.

The Lights Are On…
The first two days after the trach, there wasn’t a whole lot going on in there. Again, we feared ‘lights are on and nobody’s home.’ Corey and I had such high hopes seeing her after surgery and while we saw tiny little flashes of possible recognition in her eyes… for the most part, nothing.

At that point her nurses were wondering, along with us, if she’d had a stroke… if she’d been deprived of oxygen too long (there was a point when the machine was working as hard as it could and her body just wasn’t responding),… had brain damage occured from possible oxygen deprivation… or had she just been on Propofol so long that it was stored in her fatty tissues and it will take weeks to work itself out….?

Basically, we were wondering if we’d made the right decision by keeping her alive via machines. We wondered what kind of body we were bringing Mia back to. We were afraid we went against her wishes. But the simple fact is, we won’t know the answers to any of those questions for a very, very long time. We went with the doctor’s advice and did the best we could.

Friday, March 14th – exactly one month since I’d last seen Mia and Daddy both totally normal, laughing, fun-loving as always – I left work and went straight to the hospital. I sat down next to her bed and bawled my effing eyes out. The only person who needed Daddy more than I did is this woman… she’s the only person who can understand the hole left in my heart and my life by his death… and she’s completely out of it.

Kiiiiiiiiiiiiiiiind-of….

I lifted my head off of her bed when her nurse came in and said “Oh hey! She nodded for me today! And shook her head! And she’s tracking with her eyes – watch, I’ll call her name from this side of the room and she’ll look over!”

And sure enough, she called Mia’s name, and Mia looked over. Then Mia looked at me and I saw it in her eyes – she recognized me. She opened and closed her mouth like she wanted to talk to me. And I started laughing and crying at the same time.

Saturday, March 15th to Today and Kindred
So last Friday, Mia looked at me and recognized me.

Last Saturday Cari and I showed up at the hospital and she was turning her head, blinking for us, responding to requests to open and close her mouth… she also accidentally squeezed my hand when she had a bad coughing fit, and even moved her legs a little.

I’m writing this on Wednesday, March 19th, one whole month after Mia came down with Type A Flu, and she is being moved from the Cape Canaveral Hospital’s ICU to a longer-term care hospital in Melbourne, FL that specializes in weaning patients off of ventilators, called Kindred.

She’s made a LOT of progress considering how ill she was, but to be clear: She still cannot speak or form words with her mouth for us to lip-read  – but she can respond to simple requests with a nod, head shake, or blink. She still has not moved a muscle, gripped a hand, or otherwise responded physically to any command – but she can move her muscles when coughing.

The Longterm Outlook
It’s a miracle that Mia is alive right now, but she has an enormous road ahead of her to recover. There is still no telling if she CAN recover. All we know right now are that the signs are promising, and she is making small improvements each day.

But to be clear, her future is very uncertain. She may never be able to relearn motor skills enough to live on her own again… she may never go home. But she also might surprise the hell out of us and be back in her house in six months. We just don’t know.

After her time at Kindred she will need to go to a longer-term rehab facility. We’re not sure if we’re going to be sending her to one in Pensacola to be nearer Cari, my stepsister and her daughter who has Power of Attorney, or if we will need to keep her nearby Merritt Island. That will all depend on how well she is to travel… we kinda hope she’ll be able to tell us if she even *wants* to travel.

As for the kids…
In the meantime, Cari, Corey, and I are splitting up the weeks at the house to take care of our parents very old dogs who are just as shocked as we are. Depending on how long Mia will be in rehab, we will need to find a foster home for them, which breaks our hearts and is a decision we’re putting off as long as possible.

We’ve taken care of Daddy’s will, honored his wishes to be cremated, and started the process to have him interred at the Florida Veteran’s Cemetery. We’ve gotten a probate attorney to help us sort through everything and we’ve started going back to work. Next, I’m going to start planning a memorial service for him and give folks enough notice to come from around the state.

I’m going back and forth between good-Daddy-days and bad-Daddy-days… which I’m sure I’ll continue to write about as I process. But what really breaks my heart is that, by the time Mia can really understand that Daddy died, my grieving process will be very far ahead of hers. I know what kind of pain and heartbreak she has in store. And whatever her recovery process may be… that heartbreak is awful, and I would give anything to save her from experiencing it too.

Mia and Daddy

Mia and Daddy