briefly

HI! HI! HI!

So I was sick and then I felt better and then my kid got REALLY sick and I got no sleep and Fred was sleeping everywhere but in his bed because that’s where my really sick kid was, and then she got better and then I got REALLY sick, like, sicker than I’ve been in years, and I would lie in bed and moan and wake Fred up in the middle of the night to say, hey, I’m really sick, and so he left his bed again, and after many days of being REALLY sick, I got better and now I have energy and can eat and Fred can sleep in his bed again, and we’re ALL HAPPY.

How are you?

tuesday, tuesday, gotta get down on tuesday

And a good morning to you!

Let’s see, since we last spoke, I opened my Etsy shop and slowly began driving my family crazy. Yay for indie businesses!

Honestly, opening the shop has been awesome. I am so happy and so excited, and yes, there are road bumps (including a major one that made me weep last night, but that I’ve hopefully solved, MacGuyver-style), but I love making these products and sharing them. Plus, you know, they smell good. That’s always a bonus.

Two (and a half) shop-related things to tell you about:

1. I’m having a GRAND OPENING SALE! That’s right, all items are available for a seriously low and awesome price until February 29, so grab your goodies now and get hooked.

1.5 There’s a Facebook page for the store. Like away like a mad person and learn about new products and relish the opportunity to call me out in public.

2. Carrie is hosting a CUH-RAZY giveaway on her blog — it’s bento madness! I really didn’t want to tell you about this giveaway because I love bentos and I don’t want anyone to enter because I want to win ALL THE BENTOS but Carrie is hilarious and super sweet (and hawt, ya’ll) and offered me a little spot on her site to peddle my wares. Go enter her giveaway and then stay for the blog.

there is no title for this one

There are some, er, technical difficulties with the shop right now. Namely, a sick kid and my paranoia that the germs are traveling en masse via a green cloud of doom straight for my sinuses. So there’s been a lot of napping and juice drinking and generally not doing much of anything. Just a regular week here!

Today is my dad’s birthday. He would have been 62. I miss him. I dream about him a lot — mostly dreams where he’s annoying the shit out of me. I wake up feeling relieved that I’m still capable of remembering all of him, not just the good parts. There’s never any feeling in the dream of wrongness or “you’re not supposed to be here” stuff. Just… life with my dad. I’m glad that even though he’s not here anymore I can still have that conversation with him where I keep repeating something and he’s not getting it and I throw up my hands in frustration and he chuckles and we move on to talking about something else. Maybe he’s somewhere having that same conversation with me.

…and we’re back!

{I hope those of you who stopped by yesterday and were like, SOPA WHAT? clicked around and read about it. As a librarian — and a person with feelings — I’m against censorship. And against plain old stupidity. OK! Moving on.}

I have super exciting news!

I GOT A PONY!

Oh. Wait. No, sorry.

I GOT AN ETSY SHOP!

For the holidays, I decided I wanted to give my friends something handmade but that didn’t involve copious amounts of butter and sugar. Not because I don’t believe in butter and sugar — because DO I EVER — but because I wanted something that would last a little bit longer than a few days without going stale. I was going to be shipping some of these gifts across the country to recipients who would be traveling, and I wasn’t sure how long my sad little box would sit unattended at their door.

So! I made a sugar scrub. You know, for hands and such. Well, mostly for hands. And a lip balm. FOR THE LIPS. And my mom helped me package it and she also tested some of my early mixes. The batch that won was the one that made her say, “I’d pay for this. And I know a lot of people who would pay for it, too.”

DING!

I turned the idea over and over, and decided that yes. I could do this. I could sell this. I would make it and it would be lovely, and I would put pictures of it online, and perhaps people would click and think, “Oh! Doesn’t that look lovely! And my hands are so dry and grizzled from this hideous winter weather. A scrub would be just the solution.” And then send money to my Pay Pal account and in return receive a pretty package from me with their winter weather solution.

I labored over a name. All the good ones were taken. I wanted clever but not cutesy. I wanted the name to give a shopper an idea of ME and of what the products represented. And so, after much haranguing of the internet and my husband, I woke up in the middle of the night with the name. It’s not a show stopper. It’s not going to make anyone chuckle. But it’s the name that stuck.

The shop’s not quite ready yet. I’m planning the grand opening for this weekend. There will be goodies — I hope you stop by. I’m so excited about this venture of mine. It’s a test for me in so many ways, and I’m ready for the challenge.

{I also want to thank all of the folks who helped me brainstorm name ideas and supported my ideas and asked for more! information! because yay! indie business! You guys are the best.}

And so, introducing…

Seriously. So excited.

tomorrow

Here we are. The eve of a new year.

For obvious reasons, I won’t be doing any wrap-up posts. I’m ready to move on, move forward, take steps, and LIVE.

I’ve thought a lot about what I want to do in the coming year. I don’t like to think of them as resolutions, because as I’ve mentioned, that just leads to disappointment. And I’m not sure that calling them goals is exactly right either. More like, wishes. Hopes.

I want to keep reading.

I want to keep writing.

I want to make something pretty.

I want to be here more.

I want to be with my family more.

I want to be a better librarian.

I want to bake something good.

I want to start something new.

I want to finish something I’ve already started.

I haven’t known what to say.

I talk to some people about it. I don’t talk to others about it.

I don’t cry.

I’m probably not acknowledging that Sunday will come and hit me over the head. I’m hoping for a speedy arrival of Monday.

I know that some are made uncomfortable by others’ grief, and that’s the main reason why I haven’t come here and said anything. But another truth is that I’M uncomfortable with my own grief. It doesn’t fit right. I’m not sure what to do with it. Do I wear it? Carry it in a bag with me? Put it in a drawer to take out and look at every now and then? Or swallow it, and feel it sit in my stomach, cold and hard.

There have been other things I’ve wanted to say here, things that have nothing to do with illness and death and fathers and shitty mornings and waking up at 3 am wondering why I can’t go back to sleep and then Oh, right. That. Happy things. Pretty, shiny things.

Before I can share those things with you, though, I wanted to share something else. I need to post this. To release it. Then I can tell you about the pretties.

When my dad was sick, he told my mom what he wanted for his memorial service. Specifically, the hymns he wanted. He also said no eulogies were to be given. She stopped him and asked him — what if I, his only child, wanted to say something. Fine, he relented. But only her.

I both did and didn’t want to give the eulogy. I wanted to because he allowed it. Because I could tell people what I thought of him and how much I loved him. I didn’t because… well. It was his funeral. I honestly didn’t know if I could physically do it. If I could stand. If I could speak. But I did. Here it is.

***

I’m not sure where to start this. How to tell you about my dad. Which, honestly, I probably don’t have to do. Each and every one of you knew him. We’ve been struck the past two weeks by learning just how many lives he touched, and how deeply people cared for him. From his very best friends here at church to the receptionist at the condo management office. We knew he was gentle and generous, loving and kind, funny and accepting. What has amazed us is that EVERYONE saw that in him. That’s who he was, inside and out, no matter who you were.

From a very young age I knew my dad was different. That he saw in people something others didn’t. When I was a child, he was a juvenile probation officer, and I called his probationers his babies, because he treated them as he treated his own child, with love and respect and honesty. My mom and I would joke that my dad had no boundaries when it came to getting to know someone. The best example I have of this is from a family vacation when I was 12. We had gone out to dinner and the waiter connected with my dad so much that when his shift was over, he came and sat down with us for the remainder of our meal, just so he could continue talking to my my dad. Over and over, my friends would tell me how much they loved my dad, how instantly at ease they felt with him, how it felt like they had known him forever. He made everyone feel this way. The last time I saw him, he was in the ICU and he had a smile and a joke for every person who came into his room. And when my mom and I would come in each morning, he had the biggest smile for us. Unless he didn’t like his breakfast.

He was stronger than anyone of us could ever hope to be. When he first got sick he wasn’t supposed to live a year. He fought and he survived each battle and he lived eleven more amazing years. Each year left us feeling like we had received a gift. We wanted to be normal about it, not make a big deal about each birthday, but it was hard not to. He’d done it again.

I wish I had to time to tell you everything about him, but I’ll have to settle for some of my favorites. Sitting at the dining room table with him in the morning when I was 5, he with his coffee and me with my milk, singing Gilbert and Sullivan. Having him join me Saturday mornings to watch Looney Tunes cartoons. Having him do the same with his granddaughter. Our date when I was in high school to see the latest Star Trek movie. Making fun of my mom’s choice of music, teasing her about bubblegum pop, and then his introducing me to the extended length version of In a Gadda de Vida. Asking him to please pick the music for my wedding and knowing he would be there to hear it. That his cell phone ring tone was the Harry Potter theme.  He was the most brilliant person I have ever known, and as a kid I loved just flipping open a dictionary and asking him to define the weirdest, longest words I could find.  And he did. Every time. His absolute love of science fiction, and his joy when I would recommend a book to him. Watching him read to my daughter, her in his lap as I had been so many years before.

It is because of him that I have the sense of humor I have, that I read the way I do, that I listen to the music I do, and that I love the way I do.  He taught me that, just as he taught each person he met to love and be loved by him.

Yesterday was our first holiday without my dad. I can’t say that Thanksgiving was my dad’s favorite. For the most part Thanksgiving was spent with my mom’s family. Imagine as many conversations as there are people, all happening simultaneously. Loudly. In multiple languages. My dad would hang out on the fringes, drinking his coffee and reading or chatting quietly with my uncle. My mom and I would pass by and check on him, make a snarky comment or three, and then dive back into the commotion. He would join us for the meal, which he always told my grandmother was perfectly prepared.

My favorite childhood Thanksgiving memory was when we stayed home, the three of us, and I woke up early to the sound and smell of my dad getting the turkey ready. That’s what I kept remembering that yesterday. It’s what I’ll remember next year, and the year after that.

One down. Way too many to go.

right now

I have an appointment to get my haircut in an hour, my house is dark and I’m eating last night’s leftovers for lunch, AND I already know what I’m going to make for tonight’s dinner, so take that (are vegetables REALLY necessary?), and lately I’ve been walking around with a permanently clenched jaw because my dad was denied the heart pump because his aorta’s too crunchy (actual medical term) and so it’s just a matter of maximizing the efficacy of his meds (does anyone else love the word efficacy?), BUT he’s walking almost on his own now and totally eating and pissing off my mom so I think he’s feeling better; I still have a sore throat and have decided that this cold and I are done, finito, and can I have a vacation now?

That was the longest sentence I’ve ever written. If I’d known that’s how it was going to go, I would have alerted Guinness.

the whole shebang

Well.

I’ve been wanting to write a long, comprehensive post about my dad but haven’t had the time, energy, emotional fortitude, or enough booze.

On January 26, 2000–the day after his 50th birthday–my father had a massive myocardial infarction. A heart attack. My mom told me just yesterday that they call the type he had a “widow-maker” and the situation would have had a very different ending if the ambulance hadn’t gotten there when it did.

Eleven years…

(Eleven years means my mom and I have become well-versed in cardio medical terminology. We have to be. There are doctors who assume we don’t know what we’re talking about so a demonstration to them must be made. Other doctors [the ones who have stuck around] know we’re aware and educated about the situation and talk to us as equals instead of country bumpkins.)

(To be very clear, some of my best friends are doctors. I have nothing against doctors. I just don’t like assholes.)

…one triple-bypass, numerous stents, a failed candidacy for transplant, five more heart attacks, and several hundreds of dollars worth of medications per month later, here we are.

And where are we exactly? End-stage congestive heart failure.

About three weeks ago (I think, since time holds little meaning at this point), my dad began having trouble breathing and having chest pain. It sounded like a heart attack. Off to the hospital he and my mom go. Not a heart attack but pneumonia. See, congestive heart failure (CHF) causes your body to retain fluid, and it will often collect in the lungs. It also can cause swelling in places like the ankles and the feet. But my dad didn’t have any of that so the outward signs of CHF weren’t there. But they were there in his lungs. So he began a dose of antibiotics as well as a diuretic to eliminate the extra fluid. There were a few ER trips that week as they worked to adjust meds, determine oxygen at home was needed, and establish a plan. I flew out to Tucson and stayed with my mom. We spent all of our days in the hospital with my dad, who took great pains to assure me that he would be fine. I stayed for a long weekend and he was discharged the day after I left.

The next ten days brought a marked change in my dad. He ate very little, he slept a lot. He grew weaker. Then, over the phone, the call came from cardiologist’s office to double his dose of diuretic. Within 24 hours, he was back in the hospital. He hasn’t left.

There have been two major mistakes that we can see having contributed to his current decline. One was a pharmacy mix-up with his thyroid medication. (Oh, right. He has hypothyroidism as well.) The second was the doubling of the diuretic. It severely dehydrated him (he also had a limit on how much fluid he could drink) and caused his blood pressure to plummet. He expressed the thought that he was dying (he apologized at the time if it seemed melodramatic, and he is NEVER melodramatic), my mom called 911, and I flew back on the first flight the next morning.

My mom & I watched him crash at the hospital, and a rapid response team was called in. You know on ER or Grey’s Anatomy when a bazillion people come and crowd around a patient’s bed and yell questions at him and orders at each other? Yeah, like that. We watched my dad’s blood pressure steadily decrease and his heart rate follow suit. People kept shouting things about not being able to get a temp. They turned on ALL the lights above his bed and had him flat on his back. My mom and I huddled together in the corner, clutching each other. They stabilized him, he crashed again (though not as significantly) about 45 minutes later, and was summarily transferred to ICU.

Over the next few days they were able to get his blood pressure raised and the fluid balanced. He was moved to a regular room, and everything fell apart again. He wasn’t able to stay awake and he was there was major disorientation and tremors. He was only able to handle liquids, and there were at least two days when we thought we were losing him. I don’t like euphemisms for death but that’s what it honestly felt like. He was slipping away.

Backing up a bit. My dad has a pacemaker/defibrillator implanted in his chest. A little while ago, it began beeping. The battery was low and needed to be replaced. The procedure was scheduled for the end of September but ha ha, he was in the hospital. No problem–it was rescheduled for the end of October. October 28. Today.

Ok, back to last week. It was determined that instead of simply replacing the battery perhaps an entirely new device was needed. So we waited. This was Thursday. On Sunday, we were told maybe he could get the new device on Tuesday. Then we found out that the surgeon was out of town. Ok, call another. No, he’s out of town too. And then there was radio silence from everyone until Wednesday morning when a nurse came in and told us that the transfer to another hospital was in process, as though we were already aware. I told her she had the wrong room. Within half an hour, we were finally told a little of what was going on. The surgeon who was supposed to change the battery, then implant a new device, had been faxed my dad’s most recent EKGs. She nixed the new pacer and said he would need an LVAD–a left ventricular assistive device. Oh, we said. That’s why the transfer. Ok, we said. That’s all we knew. We didn’t even know when the transfer would happen, so in the event of a middle of the night trip, my mom and I spent the night in my dad’s room.

(We ordered a cot. We were told none were available. There was an empty bed in the room but we were told in no uncertain terms that we were NOT to get in it. We gazed longingly at it all night. My mom likened it to holding a large glass of water just out of the reach of a parched man.)

Yesterday afternoon an ambulance drove my dad across town to the hospital at the university (for those of you not from Arizona, you’ve probably seen this hospital on the news; it’s the one Gabby Giffords was taken to when she was shot). And he was back in ICU. The first thing my mom and I noticed was the recliner AND pull out bed. We were working on about 3 hours of sleep, with our longest stretch being 90 minutes, and we’d already been up about 12 hours. While the nurse drew some blood from my dad’s picc line, we asked when we might see Dr. I., the surgeon who had recommended the LVAD (and who was going to implant a new device originally). The nurse asked why we were asking, and we said, “Well, because she’ll put in the LVAD?” “Oh, no. She doesn’t do those.” (We suspected as much but, you know, no one told us otherwise.) “Dr. S. will do the surgery.”

So we waited for Dr. S., who, as it turns out, is MAYBE five years old than me and has way better hair. She was fantastic. She asked my dad to tell her his whole story and she listened thoughtfully the whole time. She explained that his situation–heart disease that starts at a young age–has taken a typical path. Then she explained his options. Continued medical therapy, transplant, or LVAD. She warned that the requirements for both the transplant and the LVAD are very strict (the transplant more than the LVAD). She also said she strove for maintaining QUALITY of life, not quantity. The battery of tests for evaluation would begin first thing in the morning.

And so my mom and I went home, bleary-eyed and dreaming of a pillow and soft surface on which to lie. We slept the sleep of the drugged and severely sleep-deprived. This morning, we felt normal.

(Honestly, we’ve forgotten what real normal feels like.)

That brings us to today. The evaluations have included enough blood drawn to dessicate a small cow, an echocardiogram (that the tech let us watch and explained it all as he went along –the benefit of being in a teaching hospital), and a two and a half hour stay in the catheter lab, where they did an angiogram to investigate flow and blocks, and to insert a Swan line.

And here we are.

When will we know what will happen? We don’t know. We may not know for days or even weeks.

So we wait. And watch. And hope. Mostly hope.