Monthly Archives: March 2014

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

I am not okay right now

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My days are one of two things lately. Numb, or broken.

Numb means I am quiet, removed, unattached. It means I can go about what needs to be done and make progress on things. Numb enables me to tell people over and over… “My Dad died… it was very sudden… he was my best friend… he was only 63…” while shuffling back and forth from work to Merritt Island to the hospital where I talk to Mia about things that don’t matter and make really lame jokes at my own expense in a desperate attempt to lighten the mood in her room.

Broken means exactly what it sounds like it means. I can’t think or focus. I cry at the drop of a hat. The smallest amount of stress is enough to send me into a mini panic attack. I can’t believe all that remains of my Daddy is in this little 5lb black box on our shelf and I go between bouts of screaming, literally, for my Daddy while sobbing or just whispering “where did he go?”

So, I am not okay right now.

I also don’t really want to talk to anyone.

So far, the number of friends I will engage in text conversations can be counted on one hand. The only people I’ll actually speak to on the phone are my family, nurses, funeral home staff, or other people involved in getting my Dad’s assets taken care of.

The stages of grief are very real. I can try to describe how I’m feeling them but I don’t know if any words can do them justice…

    • Disbelief – I seriously cannot believe I exist in a world without my Daddy. I am in just complete and total disbelief at what has happened, that this is my life, that this is the hand he got dealt, that this is how things have ended for him. I simply cannot bring myself to believe it some days.
    • Shock – This is where the numbness comes from. His death still hasn’t set in. Some days I wake up and forget it happened or where I am (usually his house in Merritt Island, sleeping on his couch) and then I remember and am just shocked. Like, seriously? My Daddy died? While I was in San Fran on vacation? And *I* had him cremated and those are his ashes over there…? But… I wasn’t ready. No way is this real.
    • Anger – I’m talking pure hatred here. I see ancient people walking around and hate them for getting such a long life. I hear people talking about their Dads and hate them for still getting to talk about their Dad. I’m angry that the powers that be took MY Daddy. Which leads me to…
    • Resentment – This isn’t fair. He was all I had. I’ve said for so many years now that “I long ago accepted I got dealt a shitty hand with Moms, but God made up for it by giving me the most amazing Daddy ever.” And now he’s gone. It’s not fair. It’s fucked up. I fucking hate everyone and everything and every fate or deity or higher power that could have played any hand in having done this to us. He was my Daddy. He was my everything. Why would anyone take that away?!?!?! HOW?!? How could any higher power have done this to us? To him? He deserved SO MUCH MORE! He was TOO GOOD of a man to have had such a short life. THIS IS NOT FAIR!
    • Grief – This is what I call “heartbreak.” I seriously feel like my chest cavity has a hole in it… a big, black, EMPTY hole where my joy and zest for life previously lived… and the black hole spreading. Which leads me to…
    • Fear – I hurt so badly right now, and there is no end in sight. I’m actually afraid to love anyone anymore. Maybe that’s why I’m pulling away from my friends? I look at my Uncles and how much I love them, and how they are all I have left now, and I want to stop talking to them. I want to stop loving them. Because when this happens and they are taken from me I will have to go through this pain all over again and I can’t. I just can’t. I look at Vince and see how dependent I am on him and our love, our marriage, and I just want to run away and forget him. Because the day I lose him is the day all that is left of me will die. I am so afraid to love anyone right now… because in the end, they will die. And I will die a little too.
  • Not alone – This is actually a surprise for me. I thought “no one can possibly understand this loss because no one can understand how important my Daddy was to me and how close we were and how he was all I had and all I ever needed.”  Even my siblings can’t understand. My relationship with my Daddy was unique and special and completely awesome.  But I went to work and people started telling me about losing a parent and I realized something: I am not alone. Yes, my relationship with my Daddy was unique and no, no one will ever understand the specifics of my loss. But there is something universal in the loss of a parent… when someone looks at me and can see the heartbreak and anger and exhaustion on my face, the total lack of hope in my eyes, and they say “I lost my Mom/Dad… I understand,” I believe them. Their pain might be different, but they know how deep it goes.

I can’t imagine having fun ever again. I wouldn’t even know how to start…. the simple fact is, when my Daddy died, a part of me died too. The young, naive girl I was, the one who saw the world as this amazing, wide-open space to play and laugh and love… that girl is gone. She was only able to feel that way because she had a Daddy who loved her, who she could call at any time about any thing… the girl I was lived and existed to make her Daddy proud.

I don’t have a Daddy now. I don’t know who I am anymore. The best, funniest, most honorable and upstanding man I knew who loved me better than any Daddy ever loved a daughter, better than anyone will ever love me again, is gone.

And I am not okay.

Life so far…

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It’s been two weeks since I spoke to my Daddy. The good news is that I don’t have to say it’s been that long since I heard his voice because I found some old voicemails saved on my phone. I have one where he says “I love you” at the end… I’ve probably played it a hundred times since I found it.

The bad news is that two weeks is about the longest we’ve gone without speaking so I am fast approaching a new milestone…. and every week thereafter will be a new milestone: The longest I’ve ever gone without talking to my Dad.

I know I can’t obsess over those things. I know it’s not healthy. But the thoughts are there and they sneak up and the next thing I know I’m sobbing uncontrollably.

So if you’re wondering how I’m doing, this is it. I guess I’m doing as well as can be expected? Tomorrow I go back to work. I wonder how that will go.

Anyway – here’s what’s happened since my vLog on Daddy.

    1. Mia got much, much worse but she is slowly starting to improve. She got so bad that we told her about Daddy while she was on a break from her sedation. I think she heard us. I think she was looking at me. I think I saw tears coming out of her eyes. But otherwise, she is completely unresponsive. She doesn’t blink on command or squeeze a hand. She stares into space and sometimes furrows her brow. That’s it so far. We don’t know why. Maybe she was deprived of oxygen too long because of her lungs? Maybe she had a stroke we don’t know about? Maybe she got so sick that she’s no longer “there”…? We just don’t know and we won’t know until she can come off of the ventilator which is still many weeks away.
    1. I took care of my Daddy. When we realized Mia was not only *not* coming out of it anytime soon, but *couldn’t* come out of it, I went ahead and took care of my Daddy. I had him cremated in the suit he wore to my wedding, with the blue shirt and tie I made him buy. Vince found the receipt for that suit later and we cannot believe how much he spent… God he loved me… he did look good in it though. In the suit pocket we found a blank wedding adlib card. I guess he took it home to fill out and didn’t get around to it. I had that cremated with him as well.
    1. We got an attorney. In one of our parent’s safes we found a card for their lawyer in the state of Maine, where they lived for 5 years. That guy, nice though he was, refused to tell me any details of my Dad’s will. So we got a probate attorney in Brevard County and I am officially petitioning to become substitute personal representative of my Dad’s estate in Mia’s place, since she is unable to perform those duties. This means I will be in control of Daddy’s assets and how they are dispersed. My stepsister, Cari, now has Power of Attorney over Mia’s finances, so she will be in control of her mother’s assets and how they are dispersed. Essentially, we are stepping into the role of our parents to keep the bills paid and, most importantly, pull together as much money as possible since we have a feeling Mia’s health is going to require expensive, longterm care.
    1. I got sick and had some next-level-shit panic attacks. Last Sunday, while watching the Oscars, I had a full on break down the likes of which I have never had. (Okay not true. It was exactly like the one I had while my Daddy died over the phone the previous Sunday). The next morning I woke up sick and was petrified that I had the flu. After all, I’ve been traipsing in and out of the hospital where Mia picked it up. So I went to the doctor and it turns out my body was just so exhausted that I got a cold, had elevated blood pressure and heartrate, and was just run the fuck down. I got a prescription to Kolonopin and besides from snapping at a few people a few times and crying a lot, I haven’t lost my shit completely.
    1. I picked Daddy up. He was ready yesterday, Saturday. Cari and I went to the funeral home to pay for him and I didn’t expect him to be ready but he was. I wasn’t ready to get him… to have signed off on cremating my Dad is one thing but to pick up a small box that’s all that remains of the big man I danced with at my wedding less than a year ago? Noooooo way. So Cari and I went back to our parent’s house and got Vince and Corey, and then we went and picked up Daddy. He’s not as small of a box as I thought he would be. He’s a good 5lbs, if not more. And he’s at home until his place at the Florida Veterans Cemetery is ready.

I would say “that’s it” but there’s been sooooo much… and I remember so very little of it all. All I know is that we have been incredibly productive the last two weeks. I hope I’m making my Daddy proud. I miss him every damn second. I know if I could just call him he would know exactly what I should do with all this shit.

But my siblings and I are coming together. Cari and Corey and I have all but dropped the “step” from our explanations to people. At this point, after going through something like this, we are brother and sister.

So I’ll close this as I close nearly every thought lately…. “I love my Daddy.”

dancing-with-daddy