A Bucket List for 2024

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Every so often I like to put together a list like this – my first one was back in 2001, then in 2015, and now here we are in 2024!

I’m 44 years old now. More than twice my age when I wrote that first list, and not so surprisingly in hindsight, a lot has changed over the years! I can’t say that I care about writing for The Simpsons or my own sitcom anymore, or even going on a Disney cruise as opposed to any of the other lines. And as much as part of boat life still intrigues me, I’ve seen enough YouTube videos of guys bumbling around engine rooms to think that maybe having a friend who has a boat might be a bit more relaxing than actually owning one myself…

I’d argue that some of the goals from nine years ago still apply, and I’ve even finished a handful of them since then – my Lego Minifig collection is kind of ridiculous these days, to the point where I don’t know where I’m going to display them if we ever move! My server rack has also grown as big as it probably will under this roof, which is good enough for now. A few years ago, we discovered the miracle of solar heating for our pool, which has truly been a game changer, and I’ve spent a surprising amount of time playing video games this year alongside my kids, which is super cool!

Nonetheless, I thought it would be fun to throw out another list here tonight and a decade or so from now, we can look back again and see how things played out…

Career

  • Be very, very close to early retirement!
  • Pay my mortgage exclusively with money earned from writing.

Travel

  • Explore some of the castles around Europe.
  • Introduce the kids to cruising, and assuming nobody falls overboard, take them frequently!
  • Be able to afford a lifestyle that gets our family out of the house on a regular basis.

Health

  • Get a new kidney and don’t squander it.
  • Incorporate regular exercise into my life.
  • …the same with meditation…
  • …and also eating healthier.
  • Go easier on myself when things don’t go as planned.

Parenting

  • Be a part of their homeschooling journey and teach them as more than just a passerby.
  • Help each of them to do something really hard.
  • Always be seeking out new opportunities for quality time to spend with each of them and with the entire family all together.

Other

  • Learn how to cook a really good steak.
  • Build our forever home.
  • Build an arcade with the kids in said home.
  • Do things that are unexpected and push my own boundaries – not for the sake of other people, but for myself.

Next stop – 2035! I’ll be in my fifties, Christopher will be done with school and the twins on the cusp of graduation, and with a little luck, maybe early retirement will actually be in reach!

…or maybe I’ll have already been retired for a decade – who knows?!

Finding the Positive in 2024…

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I spent a little time reflecting on the past year with Sara over the weekend and although from many angles it’s been rough, it’s nice to see that it hasn’t been all bad…

  • I had to do got to do dialysis to keep me alive this year.
  • I’ve taken more time to actively watch the kids’ homeschooling lessons, which is something I couldn’t do if they went to public school or I didn’t work from home.
  • Matthew finally got potty trained!!!
  • Saw each of the boys really starting to mature in ways that both inspire me and I’m not entirely ready to face!
  • Went on some cool field trips to the aquarium and some crazy art and science museums.
  • Saw my first concert in maybe 20 years with my wife – (Heart and Cheap Trick).
  • Watched Deadpool & Wolverine in the theater, which was pretty badass!
  • Avoided getting peritonitis, which is one of the biggest threats for people doing peritoneal dialysis like I am.
  • Endured the wrath of two hurricanes unscathed.
  • Played a lot of video games, including romhacks like Final Fantasy IV: Ultima and Final Fantasy IV: Free Enterprise.
  • Navigated the dialysis roller coaster as best as I could.
  • Tried to spend some good, quality time with each individual member of my family.

And just offhand, a few things I’d like to try to do more of next year…

  • More time looking inward, less time stressing about things that I can’t control.
  • Take the kids snorkeling in the Gulf, even if it’s just off the beach.
  • Less doom-scrolling!!!
  • Find a way to incorporate movement/exercise into my life again.
  • Get a kidney transplant … if the stars happen to align!

So, Now What???

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He won.

Donald Trump – a man convicted of 34 felonies, accused of sexual assault 26 times, a “billionaire” with six bankruptcies, twice divorced, and twice impeached … once for working with the Russians to interfere with an election, an another for leading an insurrection to overthrow an election – that guy is going to be our president for the next four years. Again.

This time there was no funny business, despite Trump insisting on fraud right up until he started winning, after which it immediately went poof and the election was free and fair once more!

And there was no gloating or violent uprising afterwards … except for guys taunting women with “Your Body, My Choice” on social media and threatening execution for anyone deemed traitors for daring to oppose President Trump. You know, normal jokes about rape and murder that sane, rational voters make everyday…

That’s America for ya.

A common comment that we like to throw out at times like this is, “That’s not really us. America isn’t like that.” yet as I watched this campaign unfold and even when the MAGA movement first started almost a decade ago now, as his number of supporters rose enough to beat who I would honestly regard as two of the most qualified candidates to ever run for the presidency (YES – Hillary and Kamala), the hard truth of the matter as we stare down 74 million votes versus her 70 million is this – whether we like it or not, the MAGA movement does represent America in the majority today.

We’re a country that elected the biggest asshole possible to the most powerful office, and he was put there by a legion of asshole supporters who favored empty promises and deceit, hatred and bigotry and a divided populace to our first black woman president.

So is every last person who voted for Trump an asshole?

Well, there are certainly varying degrees of assholes, and I say this knowing that for example, a lot of his supporters are willing to overlook the awful things that come out of his mouth because they believe he’ll draw a hard line on abortion … which is weird to me alone to put forth so much care and concern for the unborn, but not give a damn about the actual living people who he denigrates every day, but I digress.

Does it make someone an asshole because they’re more concerned about the economy and keeping their family fed than they are about whether gay people can get married or transgender people can use their bathrooms of choice?

If it doesn’t make them an asshole, at the very least it makes them limited by their narrow perspective on life for not having the compassion to consider the basic rights of people who differ from themselves.

That’s always been my thing – of all the issues that I care about, human rights is by far at the very top of my list because I feel that here in America, the land of the free, if we’re not treating everyone fairly and equally, then none of the other issues even matter. It’s not freedom and justice for some, nor does the Statue of Liberty welcome those who have their shit together and have something to offer us and are willing and able to follow a lengthy, 18-24 month processing period.

“Give me your tired, your poor, Your huddled masses yearning to breathe free, The wretched refuse of your teeming shore.

So yeah, even though it’s not going to be my name on the chopping block, it scares me that our new president will be striding into office in January with one of his first initiatives being “the largest deportation plan in history.” And not simply because I like to eat and I know that most of the farm work and animal processing in our country is done by … illegal aliens!

Or that he plans on sticking it to China and the rest of the world by introducing tariffs to everything, which will ultimately increase prices for Americans because that’s how tariffs work! I mean, does anyone on his staff even have Google?! Because I looked that up in like five seconds…

Oh yeah, and there’s also the guy who he wants as the head of Health and Human Services who is anti-vaccine or at the very least, vaccine-confused. He also had a parasitic worm eating his brain and apparently dumped a dead bear in the middle of Central Park like ten years ago???

I mean, at this point I suppose we should just hope that Trump doesn’t give a cabinet position to Kid Rock, but anything is possible at this point. “I like that ba-tib-awa song. Very catchy.”

So the real question is, how do the 70 million people who didn’t vote for absolute chaos survive the next four years until hopefully we’re still allowed to vote again and can maybe try somebody else?

I’ve heard a lot of answers to this over the last couple of days – everything from embracing creativity and trying to be productive to taking a step back and focusing on self-care to even just keeping your head down and bracing for the worst. I feel like in this position where all three branches of government will be red in the near future, resistance almost seems … futile at this point? Maybe this is time to regroup and let the Republicans have their way to see if the results of their actions can sway their minds…

…which definitely feels like a position of extreme privilege, but until we start seeing them actually acting out their horrendous political promises, the ideas are still just that – promises.

And if there’s one comforting thought that I can muster at this hour, it’s that looking back at Trump’s first presidency, his biggest initiatives actually ended up failing miserably…

  • “Build that wall, and make Mexico pay for it!” – He actually built about 40 miles of new wall, and repaired existing fencing for another 400 miles. The total border is roughly 2,000 miles long. Mexico did not pay for it.
  • “Repeal and replace Obamacare!” – He made some adjustments, but certainly never repealed it altogether.
  • “We’re going to bring back manufacturing to America!” – He gave state incentives to A/C maker Carrier to prevent jobs going to Mexico, only for them to still outsource some and then send even more to China.
  • Kill funding for sanctuary cities. – NOPE
  • Gut the Dept. of Education. – NADA
  • Eliminate gun-free zones at schools and military bases. – NO.
  • Eliminate the federal debt in eight years. – LOL … he actually increased it by 33%, or $6.7 trillion
  • (here’s more if you feel like reading Trump’s greatest hits and misses)

Of course, he’s still going to do some stuff and with both Congress and the courts on his side, Trump will no doubt do some serious damage. That said, I would argue that his supporters will likely do more damage in that while we’ll read about Trump’s latest idiot moves in the news every day, it’s his fanbase with their stupid, red hats and loud MAGA banners that we’ll encounter on a daily basis when we’re shopping at the store or driving around town.

Learning how to co-exist with individuals who have declared beliefs that are the polar opposite of our own is going to be the real challenge, considering that when you sit down with people on either side, there’s a good chance that one or both of them are going to be Trump supporters. And maybe they’re not the loud and crazy type who will get into a shouting match with you, but knowing that they’re against a woman’s right to choose what she does with her own body or simply apathetic to crude remarks about race and gender and sexuality is just as discomforting.

It’s hard sitting next to Granny, knowing that when she’s with her knitting buddies, they freely throw the n-word around or learning that the manager you work for thinks that foreign people should go back where they came from. Before it was easy enough to co-exist in denial, hoping the best for any random strangers that you pass in your day, but there’s no denying that 74 million of our fellow Americans voted to put HIM back in the White House, despite everything that he’s done that’s the antithesis of what our country stands for.

I don’t know the answer, but I’ll keep typing until I figure something out – at least for myself.

To anyone reading this, I hope that you can find something to provide comfort or solace during these challenging times when our very core values are the vocal minority. Try not to lose faith in humanity even when the numbers are stacked against us, and continue to spread kindness even when the person opposite you is shouting, “Fuck your feelings!”

Take the trouble to stop and think of the other person’s feelings, his viewpoints, his desires and needs. Think more of what the other fellow wants, and how he must feel.
– Maxwell Maltz

Election 2024

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I’m nervous about the outcome of today, and yet I’m also kind of tired of it all.

Donald Trump is an absolute psychopath and has given us so many reasons that he doesn’t deserve to be a leader in any stretch of the imagination, and yet tens of millions of people around our country are voting for him anyways. Some because “they like his politics” and are willing to overlook his character, and let’s be honest … some because they like his character, in that having an asshole as President of the United States kind of solidifies their right to be assholes, too.

Character is a big part of what’s decided my vote in the last few elections, but it’s never been as bad as this. Remember this scene back in 2008 when John McCain took the mike away from one of his supporters and corrected her after she claimed that Barack Obama was a Muslim???

It’s hard to imagine a Republican candidate since then actually sticking up for his opponent, particular when in Trump’s case he’s the one slinging vitriol and hatred and literally stirring his people up to riot in the event that he loses.

He was an embarrassment eight years ago the first time that he ran and won, and now I would argue that he’s even more dangerous because he knows that he can get away with just about anything. That joke about “Shooting someone in the middle of Fifth Avenue and not losing any votes…” takes on new meaning when the former president has actually talked about retribution against his enemies … because don’t forget that we’re all Americans here, so the idea that the president considers some citizens to be his enemies is even more frightening than last time when he called the free press the enemy of the people.

The man is just exhausting and I need him to go back to hosting a reality TV show where he can pump his ego all he wants and it doesn’t really matter. We’re never going to get away from this divided country that we find ourselves in if the Chief Divider is willing to let his biggest supporters lead us into another civil war, as if that would really solve anything, anyways.

Few people realize that not either of the World Wars, but America’s Civil War was in fact the bloodiest war that Americans have ever taken part in.

More Americans died fighting each other than they did in all of the other wars combined.

We don’t need another civil war.

We need to work through our differences and find compromises on both sides of the table, and start treating each other as equals again instead of the enemy that’s trying to kill babies and overrun our nation with illegal immigrants.

Today I voted for Kamala Harris, not only because her character is one that I would actually introduce my kids to or allow them to listen to her speak without worry about what they’re going to hear, but also because I’m beyond ready to leave the Trump drama behind us and try to move forward as a nation – as divided as we are, even without that nutjob at the helm.

And it’s scary because I have little doubt that this week is going to end in violence if the results have Trump losing like they did last time. January 6th is an ugly scar on our history and it probably won’t be the last, but if anything, that’s all the more reason why he doesn’t deserve to win.

If you were to play any game with somebody and before you even started, the other guy said, “I’m so good at this game. The only way you could ever beat me is if you cheat!” … you wouldn’t play the game with him, would you?! It doesn’t take a psychic to read how that’s going to play out, either with him gloating over his inevitable win or him calling you a cheater in poor sportsmanship if he loses.

The whole notion of a peaceful transition of power was already taken off the table with Trump’s last presidency between, well, his insurrection, and him refusing like a baby to attend President Biden’s inauguration to formally hand over the office. Anyone who doesn’t think a second term will be equally or more chaotic is either fooling themselves or just wants to watch the world burn.

Let’s hope there are still enough of us who don’t to try and turn this thing around.

P.S. Two More Things!

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Today when we were shopping at Target, Christopher did something that really impressed me…

He and David had been looking at toys from the upcoming Sonic 3 movie and we couldn’t find a display that they’d had up a few weeks ago. So without any direction or prompting, my ten year-old walked up to an employee in the toy aisle and asked him if he knew where they were!

It’s the first time that I’ve personally seen him do something so independent all by himself – the guy walked him a couple of aisles over to the main area where we had already looked and very patiently listened as Christopher explained in detail what they were looking for, and eventually he pointed us towards a mostly empty end-cap a few more aisles away where at least we found something close enough.

These kids are growing up way too fast, yet it’s so rewarding watching the milestones along the way as they learn how to do things for themselves, as simple as things like this.

On the other hand, a few days ago I shockingly found myself explaining what the n-word meant because they’d heard it in a YouTube video and thought it was just another swear word. So we spent five minutes talking about it and I think by the end they understood that it’s actually a lot more than just a swear word and more importantly, why it’s not ok for us in particular to say it.

Both moments left me feeling proud as a parent – the first for obvious reasons, but the latter because I think that they genuinely listened and learned from it, which is a big deal as they’re confronted with other kids who don’t know why it’s not ok to say in the future.

This and That…

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Squarespace Sucks
I kind of got forced on them last year when Google Domains, who’s been my domain name registrar for years now, stepped out of the space and transferred all of their accounts to Squarespace. I almost avoided it by migrating a few at a time over to Cloudflare, who I’m a big fan of for numerous offerings, but apparently I missed the expiration dates on three of them and they got transferred to Squarespace instead.

No big deal for the most part, except that this week when I finally got around to moving them, I found that Squarespace doesn’t make it as easy to transfer out as most registrars do!

Simply put – normally you 1) unlock your domain; 2) request a transfer out code; 3) place the order with your new registrar; 4) approve the request once the new sends to the old. The whole process can be done in an hour or less, depending on how fast systems get updated.

Except at Squarespace, they take five days because they don’t allow you to do step #4 above and instead make you wait out a timer, which is stupid. They say it’s for security purposes, but if someone hijacks somebody’s email, chances are they can stretch it out for five days to beat this arbitrary timer, too!

So I’m frustrated because the transfer requests that I did on Wednesday won’t get finalized until Sunday, which is just annoying because it should’ve been all done by now. Grrrrrr…

So Tired of Politics
Still, I’m nervously awaiting Election Day next week because I think the results are going to be an utter shitshow either way.

I desperately want to avoid another four years of Trump because I think he’s going to be an even bigger asshole than he was last time. Yet it really scares me how close it is right now because that tie translates to, what, 75 million Americans who think that Donald Trump is the leader America needs?!

I’ve said before that Trump’s first presidency really gave assholes permission to be who they are, to the point where this time around, dare I say that now I think they’re proud to be assholes? Hell, I saw a definitive change with my Dad and his family – racist and sexist and homophobic jokes were now ok to say openly instead of underneath your breath, and those thoughts that you used to know better than to speak out loud were normal banter because, well, if it’s ok for the President to talk that way!

I don’t want my kids learning about how to speak and act from a leader like that, and it’s scary that more and more of my neighbors apparently disagree. I don’t know what the solution is because the divide seems to be growing larger every day, but how can you even try to please both sides when one side just wants to see everything burned to the ground???

I haven’t cast my vote yet – tomorrow is my last choice if I’m going to get it done early – but as much as I’m ready for it all to be over, I think we all know that it simply isn’t going to happen anytime soon.

Whether or not we’ll get there without another insurrection – only time will tell…

And So It Is November…
I, for one, am definitely grateful that the heat has finally died down!

Boy, that was a scorcher of a summer, and it didn’t make it any easier that I couldn’t go in the water at all due to my dialysis catheter and a pending surgery that I’m still waiting on. Hopefully by next spring it’ll be all worked out because I really did miss swimming with the boys and messing around with our snorkels and diving for toys on the bottom.

Needless to say, it’s been kind of a rough year.

Dialysis has had its ups and downs – my prescription was ok for a while, then I started suffering from symptoms, and then suffering from tweaks to try and prevent said symptoms. The last couple of months, I’ve just been really tired, which I’m not supposed to be with the kind of dialysis that I do, but I also wonder if it could be partially nutritional because I know that I’ve lost some muscle mass and don’t often get the right kinds of foods that I need to … protein being the big one, namely because it’s a lot compared to what I had to limit myself to before dialysis to give my kidneys a break.

Of course, dieting is always hard for me because I stress eat a bunch and life right now has been nothing if not stressful! I’ve actually tried to give myself a break because the last time I stopped scrutinizing my calories, I started feeling better – I think because I was cutting things too close, but I’m sure I’m probably overdoing it nowadays as I’ve seen my weight (and blood pressure) slowly drifting upwards.

I’d really like to get a routine going again that has me doing some exercise most days, eating a balanced diet, and putting in work during normal hours instead of wherever I can do it like I have unfortunately been doing lately. It’s just so hard to get started – particularly when I’m literally doing upwards of 12 hours of dialysis a day, every day! It can get depressing when I stop and think about it, which I don’t want that to be my perspective because I’m very much grateful that I’ve been able to do it for the last ten months to keep myself alive.

It’s a lot to handle, but it certainly beats the alternative. Not to mention, for all I know it could be years until an organ becomes available – I see people on Reddit talking about doing it for quite a while, so I know that I really need to make the best of it and settle in for the long haul. Better to be surprised when I do get that call than waiting by the phone staring at it every single night in agony…

And so although I think it’s going to be a different kind of Christmas than we’ve seen in recent years, I am looking forward to getting into that frame of mind here in the next couple of weeks. The kids are at the perfect age to awe in it all and I truly want to soak up every ounce of that enthusiasm as I can!

We’ll get there one day at a time, and be grateful for the experiences along the way, and hope we don’t have another four years of being led by an asshole, however at least my life should be rid of Squarespace by the end of the weekend. It’s a start.

Getting Old…

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According to this blog post, my little MacBook Air has been trucking along now for nearly a decade.

…and boy oh boy, is it starting to show…

I mean, it’s been on it’s last days for a while now. The battery lasts about five minutes if it’s not plugged in and most of my main apps have stopped updating years ago because they’re no longer supported. Funny enough, I never upgraded my OS past MacOS 10.13 (High Sierra) because Catalina ended support of 32-bit apps, which posed an issue because I rely a lot on Macromedia Fireworks – a legacy 32-bit app that (used to be) included in the Adobe suite.

I say used to be because now Adobe doesn’t even support it anymore, either, so I literally have a list of actions not to take when I’m using it that will cause the thing to crash, and I’m trying to learn how to do everything in Photoshop instead, but there were some things that my simple mind just liked better in Fireworks!

Anyways, today’s reminder that my computer is getting old came in two parts…

One was with OneDrive not being able to login anymore because apparently it auto-upgraded to a newer version that isn’t compatible with my old-ass machine. I discovered this upon learning that some files I had created for Sara weren’t showing up on her computer because mine wouldn’t sync. Luckily, I was able to temporarily solve this by deleting OneDrive and finding an older version that was still compatible, though we’ll see how long it lasts or if it will try to update itself again and kick it back offline.

The other was in the hands of this shiny, new 32″ monitor that I decided to splurge on with a bonus I got from work for being there for 20 years (?!). I didn’t even think about it when I picked it out, but it turns out that my old-ass machine can’t handle 4K resolution! The main display can do 1080p and it’s supposed to be able to go somewhere up to 2560×1600 for an external monitor, but right now it’s maxed out at 1600×900 via Mini DisplayPort -> HDMI.

I ordered a different cable to try Mini DisplayPort -> DisplayPort because apparently just like HDMI, there are several different versions, but it wouldn’t surprise me if I’m stuck until I upgrade the laptop itself.

…which I’m honestly hoping to do in the next couple of months anyways if I can make a couple of things work with our budget. It’d be nice to finally run the latest security updates for Chrome again, and I’ve been wanting to experiment with Vellum for creating books, but this laptop is just too old.

All in all, I think ten years is a pretty good run for technology – particularly for computers that are constantly growing and improving! I’ve probably been through three or four iPhones since I got this thing, though partially because it’s a bit harder to drop an entire laptop in the toilet, but I’ve gotten a good amount of work out of this thing over the years … written a ton of words, built some websites, and wasted a ton of time that could’ve been spent doing even more of the former two!

If I can just squeeze a couple of more months out of it until I’m actually ready to pull the trigger, that would be wonderful. We’ll see…

It’s Beginning to Feel a Little Like Christmas…

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Maybe it’s just wishful thinking on my part, but I think I’m ready.

It’s been a rough year, and I don’t really care about Halloween anyways, so if we had to fast forward to mid-November when people started putting lights up and playing Christmas music and all of that, I think I’d be along for the ride at this point!

The cooler weather has definitely already gotten my senses realigned for the holidays – I’ve been able to walk with Christopher a handful of times since our latest hurricane and I can once again walk to the car and back without sweat pouring out of my every nook and cranny, so that’s nice!

I’m also kind of looking forward to shopping for gifts for people this year. Even though we don’t have a lot to spare, it’s still fun browsing all of the latest and greatest gadgets and trying to pick out what games and toys would elicit the craziest responses on Christmas morning! Watching your kids open their presents is seriously one of the best parts of parenting… 😉

And maybe it’s just the mental state that I’m in at the moment that I’m really eager to get to the season that bombards us with happiness from every angle for six weeks straight! Like I said, 2024 has been a lot more bumps and bruises than smooth sailing, so the idea of shoving all of that aside for a while to wind down and relax and appreciate the things and people around us that matter the most sounds pretty darned welcoming to me.

You just watch – now is when I’ll finally get the scheduling sorted out for the surgery that I’ve been chasing pretty much the entire year, but I don’t care … I’ll watch Christmas movies and drink peppermint milkshakes with an ice pack in one hand and a bottle of Vicodin in the other if I have to!

Ain’t nothing gonna stop my holiday spirit this time around, even if you do come carrying a scalpel and an overly eager smile…

P.S. No, it’s not the surgery for my kidney transplant. This is something else that I’m being vague about because it’s gross, but let’s be honest, most of my medical stuff is pretty gross these days.

HAPPY HOLIDAYS!!!

Hurricane Gratitude

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Tonight I went for the first walk that I’ve been on in probably four months. The temperature was a wonderful 70 degrees and the air was surprisingly calm … a stark contrast to how it was two nights ago!

The last couple of days have been dominated by Hurricane Milton as it came barreling in from the Gulf and crossed Florida just south of Tampa. I believe it was a Category 3 when it made landfall down by Sarasota, which was somewhat of a relief because it had gotten up to a Cat 5 during its journey across the Gulf of Mexico over the previous days.

We were extremely lucky with this one – we didn’t lose more than a handful of shingles off the roof and our power stayed on through the entirety, compared to the 3+ million Floridians that lost power – many thousands of which are still out two days later as I write this. Some areas still have flooding and others look like they got hit by a tornado, which is a definite possibility … I think I saw a stat of something like 700 tornados spawned from this thing across Central Florida.

For our part, we stayed home and hosted some family from nearby, the kids had fun making forts to sleep on in the living room on account of giving up their beds, and overall it was just a nerve-wracking couple of days. By far the worst came at night – it’s amazing how loud 100+ mph winds can be – and although two out of three slept right through it, David struggled and I ended up staying up with him as we wrapped up season 2 of The Rings of Power and enjoyed dessert.

Surprisingly, he actually seemed to enjoy it and followed along as I tried to explain the story in eight year-old terms, so we may have to start reading The Hobbit together sooner or later!

As expected, the next day as photos of the damages began to show up online, it was pretty heartbreaking – particularly to see where Milton had piled on in areas where Hurricane Helene had already passed through barely a week prior. This one destroyed lots of signs and trees, tore the roofs off of two stadiums, and flooded a ton of streets and neighborhoods – many that don’t normally see issues like that, but I guess there’s already so much water in the ground from the last one that it just didn’t have anywhere else to go.

The homeschool co-op where our kids go took some pretty big hits, and Sara has already been over there to help wherever she can. Just in the brief running around I did this afternoon to grab a few things from the store, I saw major traffic lights that were out or damaged and shelves at the grocery store are still bare from people’s preparations a few days prior. I couldn’t help but think that as frustrating as it was to find parking at the mall so I could run into Red Robin and grab my pickup order, I’m sure a good number of those people were out because they still don’t have electricity at home and they just needed to get out and enjoy air conditioning for a few hours!

We’ve tried to balance how we talk to the kids about storms like these because although we don’t want to send them into a panic – which is easy to do with autistic kids – but we also want them to sincerely understand not only how dangerous hurricanes can be but also how lucky we are that we didn’t get hit harder ourselves. Looking at pictures of flooded houses and missing roofs is one thing, but explaining that these people just lost everything except for each other adds a context that I think is really important to learn even at their age.

Maybe it will be the difference between them being prepared and something tragic for not taking a hurricane seriously enough ten or twenty years from now … if Florida is still above water at that point, anyways…

So yes, I’m grateful that my hurricane clean-up was limited to picking up shingles around the yard and not throwing away furniture and carpet and drywall and basically everything else that the storm water touched. And I know that even after the power companies have utilities up and running, those who were hit hard by this thing have a long journey ahead of them to anything close to resembling normal. I definitely couldn’t imagine navigating all of that and having kids or a job that wasn’t understanding like mine has been.

The sheer power of mother nature certainly isn’t something that you want to fuck with, and hopefully we won’t hear a roaring wind again like that until hurricane season next year … or even later, if we’re lucky.

I Am Disabled

Posted on by Scott / 0 Comment

Until recently, I hadn’t really ever framed my kidney disease like this. Not that I’ve been in denial about it or anything, but it wasn’t until strangely I had a dream where it came up that it kind of clicked in my head that I’m different now, and I deserve to be treated differently.

Not better, mind you, but in ways that other people who don’t walk around with chronic diseases ever think about through no fault of their own.

In my dream, I was back working at the auto parts warehouse where I worked as a teenager and my boss gave me a little shove as he said hello. Nothing mean about it, per se, but in this case I fell down and told him, “I’m disabled – you can’t do that anymore!”

Although falling isn’t something that I normally worry about, I’m technically supposed to be wary of it because if I were to fall on my ginormous kidneys, it could cause some of the cysts on them to break, which leads to infections and all sorts of other bad stuff.

That said, when I think about being disabled now, it’s about establishing new boundaries and expectations for how I interact with the rest of the world and how it does so with me. I know that spending an entire day in the heat walking around a theme park isn’t in the cards for me right now, nor is swimming because the risk of infection through my catheter site is too great.

Where I could stand to improve on is defining these struggles that I’m having for other people to help them better understand what I’m going through and what I may or may not be able to do in my current health. Lately I’ve been fatigued a lot throughout the day, to the point where sometimes I’ll sleep for 12+ hours if I can, yet I’ll still be tired afterwards. I’ve also been dealing with a lot of intermittent nausea – mostly in the mornings – but it’s enough to suck the energy right out of you because let’s be honest, who wants to do anything after they’ve just thrown up or feel like they’re on the verge of doing so?!

My world is definitely changing – I can’t work odd hours or 50+ hour shifts anymore to push through on a project because the rest of my schedule just collapses if I don’t give my health the time that it deserves. When I first started dialysis, at least I got two “skip days” a week when I didn’t have to do it, which I would try to plan for early meetings at work or field trips on Fridays with the kids, but we just changed my prescription to get more aggressive with my treatments and those skip days are no more because now I’m doing dialysis seven days a week.

I need to figure out how to best communicate these new limitations to the people who need to hear them because I don’t want somebody thinking that I’m just being lazy by declining 8:00am meetings while I’m still finishing dialysis or that I’m using the sick excuse a lot when the fact of the matter is, well, I am!

I am disabled, and it’s not like a cold where everything will just get better in a week or two with some antibiotics. Even when I get a transplant, it won’t be entirely behind me because I’ll have to take anti-rejection drugs for the rest of my life (or the life of my new kidney). Big or small, the symptoms will always be a part of my daily life to deal with from now on.

It’s really just about empathy and understanding that some people have struggles that will follow them for life. And life is a lot easier for us when people take the time to understand those struggles and not just attempt to guess your story through their own limited world view.