The First Swaintly Family Trip, Part 1

Our first family road trip, it was a long one.

And why shouldn’t it have been?  We rarely do things in half-measure.  Which is why this is going to get stretched out over a few days.  It’s a lot.

Pre-Game Preps

Thank the gods I know how to work on cars.  I changed the oil, air filter, and spark plugs, and I got the AC charged up.  Damn good thing, too, because it was hot as balls through the whole trip.  Global warming is real, folks.  All told, once I did a little calculating, that probably saved about $600 right there.  We were already ahead of the curve.

Craig helped me install the trailer hitch, and we were all good to go.  The trailer from U-Haul was picked up on Sunday and packed the same day…

But first, where the heck was the wheelchair ramp that we were supposed to get on Friday?  What’s a “Friday”?  What’s a “wheelchair ramp”?  What’s “supposed to”?  Pisshaw, you silly humans.

See, I’d deliberately ordered this awesome wheelchair ramp from Discount Ramps because they could have it delivered by Friday – plenty of time to put it on the car and make sure that it worked.  But Friday came and went, and no wheelchair ramp.  Saturday, I’m told by multiple people that we might be able to get it delivered, but no, that’s also not how it happened.  Before we were able to leave, we had to go pick up the wheelchair ramp from the UPS distribution center and just hope that it would work the way it was intended.

Because Daniel has a wheelchair.  He needs it.  He can walk, but it’s not a good idea.  (More on why that’s true a little later.)  Also, we fully intended for this ramp to double as a cargo platform.  It’s pretty damned important.

The First Leg: Monday into Tuesday

The first step was to get Miles to Wisconsin to rendezvous with his new flatmates.  We’d originally intended to leave by 8 in in the morning, which would probably put us at his new digs around midnight.  But, as per the previous ramp problem and having to get all that sorted, we didn’t really leave town until 11.

That would have put us in town at around 4 am, and no one should be bothering the neighbors like that as their first introduction.  We called ahead and suggested that we nap for a few hours and get there at 7 or 8.

No, the other roommate just had surgery and wanted us there closer to 11.

… okay, no biggie.  Maybe he doesn’t realize we just drove fifteen freaking hours, but whatever.

Through the power of the internet, I found a couple of friends who were native to the St Louis area and were able to find us a safe Walmart parking lot in which to sleep until a decent hour.  (Traveler’s Note: Most Walmarts do allow this unless it’s specifically posted.  If you see RVs parked towards the outside of the lot, it’s totally okay.  They’d rather you be alive to spend your money there.)

We woke up and headed the rest of the way up to Madison, where we played the Keep the Garage Door Open Game and found the demise of a single bookshelf as the only loss of the trip to that point.  Once the trailer was emptied of Miles’ things, we put the ramp together, got the wheelchair and a good portion of our things on it, and headed out to Adventure!

Tuesday as the First Test of Camp-atibility

See what I did there?

It was already too late to try to hit any serious tourist attractions, so we headed over to Lake Kegonsa State Park for an overnight camp.  On the way, we picked up a tent (something we wouldn’t have had room for at the start) and food and charcoal and such.  We got to the park, paid for the site, and set up camp for our first family camping trip.

Now, some of y’all might recall that I did a lot of camping when I was a kid, and Craig did a reasonable amount himself, but none of the boys had slept in a state park (so far as we know).  I wasn’t going to make them hunt or fish or anything like that this first time out, so we grilled hot dogs – just like the fire pit at home, which was part of why we’d decided to have a fire pit in the first place instead of a grill.  It was all part of the plan.

What was their favorite part of this?  (Hell, what was the favorite of all of us…)

Fireflies.

So many fireflies!  They were everywhere, deep in the forest – and the forest around there was thick.

We lucked out and got a site right next to the loo (which was a very nice brick building with motion-activated lights and compost toilets), and the water spigot was only a short trek down the path.  There was a fire pit and a nice picnic table, and plenty of room to set up the eight-man tent.

We brought sleeping bags and blankets and pillows.

You know what we didn’t bring?

Rubber mats or air mattresses, both of which we own.

This is one of the few regrets.  We know better for next time.

Adventuring with Boys Who Love Cheese

We slept probably a little later than was ideal on Wednesday morning, but no biggie.  I got up and made coffee and breakfast (like you do), did a little pretend-laundry, got the meds done, the whole nine yards.  The boys got up and goofed around for a bit, and we looked at nature up close.

Then, it was clearly time to do a mandatory Wisconsin thing.

We went to the National Cheesemaking Museum.

Collin really likes cheese.  Like, really likes cheese.

This is Collin watching the video about modern cheese making methods before we got to the old school methods walking through the old factory that makes cheese only once a year  We found out all the different ways that you could make cheese, what makes different types of cheese different, and what kinds of standards Winconsinites apply to their cheeses.  (Hint, it’s high.)

On the way out, on the advice of the cheese guide, we stopped at a shop called the Alp and Dell and picked up cheese curds and this one piece that, I swear to gods, tastes like frikken raisin bread.

 

Tune in tomorrow for the next installment, wherein there are more adventures and pictures and fun things.

Crawling under, climbing over

Well, that whole April Challenge failed… and I should have known that it would.  I’ve owed you guys an update for a while now, so here it is.

the Little Dream

Daniel had a two-thirds anterior corpus callosotomy on the 19th of April.  It was the lead-up to that event that cut short my posts – and writing as a whole.  I made notes, I puttered, but that surgery hung off of my arms like lead weights.

It was supposed to reduce the seizures and help us get him off of some of his medications, or at least scale back.  Kids with LGS tend to develop all kinds of health problems, but most of those are from the medications.  Of course, the alternative is that they’re dead because literally constantly seizing is not a great condition.

The surgery itself was okay, but the aftermath was not.  We went home after a week, only to end up back in the ER four days later when he started running a seriously scary fever.  He managed to give himself a nasty infection when he scratched open his sutures, which meant another surgery to wash it out and install a PICC line to deliver the antibiotics – for six weeks.

Unfortunately, the surgery actually made the seizures much, much worse.  Almost all of his medications have increased, and we’ve added another one to try to control them more.  On the plus side, he has a wheelchair now and will be getting more safety equipment.  Our next consultation with the neurosurgeon is in October, and we’re expecting to go in to complete the process with the posterior corpus callosotomy shortly thereafter.  Because brains are fun.

Not surprisingly, though, Mr. Charming has an actual fan club at the hospitals.  Since we can’t sit with him 24-7, they have sitters whose sole purpose is to watch him and keep him company.  He is so sweet, so lovely, that all of those ladies and gents ask after him and are putting in to watch him again when he goes in for another EEG in August.

Educational Pursuits

I finally caved in and re-started Ashford University again.  Turns out, instead of fighting the threat to their accreditation, they upped their game and added core classes, more programs, and let me change my major to something more interesting.

I’m still, for now, maintaining a 4.0, but I’m actually a little excited that the class I’m in now, SCI207, might knock that down a bit.  I mean, not like I’m not going to give it my all, but it’s a thorough subject.  And it’s about the environment, and you know how much I love that.

I shifted gears from trying to back into my goals to running at them headlong.  I’m doing a Business of Information Systems program, and I’m about to apply to the Honors School.  That’ll replace my minor of Writing, but it’ll get me into a bunch of super-awesome classes that I really, really want to take.

Simultaneously, I’m also taking a bunch of Udemy courses to try to round out some saleable skills in the meantime.  That degree won’t fruit anything for a couple of years still, and I’ve gotta do something productive in the meantime.

Writing

I know I still owe you guys a novel.  I haven’t forgotten.  The stress and travel of Daniel’s condition, plus the overwhelm of just so much stuff, all sucked my creativity dry.  I have the bones, though, and some really awesome support items (maps and sketches), though.  It is my solemn vow that you will not be without a sequel.

For the time being, you can still read “Middle of Nowhere” on Inkitt, but I’m toying with the idea of sending it to other agents.  I honestly do not have the time to commit myself to marketing all day, every day, which is what they’re looking for.  Also, I’m not sure that my story fits with what the crowd at Inkitt is into.  The novels that are getting chosen for publication are supernatural romances with werewolves and vampires.  That’s definitely not what my world is about.

I’m still tinkering with some short stories, too, but they’re not flowing like they used to.  I’m thinking that once we get a little more of a normal schedule going, maybe that will be easier.  I still have a Patreon page, and I am drafting something new and exciting to post over there as well.

I do have other kids, you know.

It’s easy to skip over because Daniel’s condition kind of eats all of our attention, but the other kids are pretty damned awesome, too.

[REDACTED]

Miles is leaving for college very soon.  He got into the University of Wisconsin at Madison for Political Science, which we knew was totally going to be his thing.  (You can still contribute to the trip and maybe get a teapot set out of it.)  He graduated Magna Cum Laude from MacArthur and arranged all of his financial aid, living situation, and entrance stuff, all on his own.  He’s got a clear vision on how to use his super powers, and I swell with pride every time I think of it.

Joseph is really working hard at pursuing his desire to make movies.  He’s definitely in the horror genre and posts his stuff to YouTube.  He’s still leaning heavily on Five Nights at Freddy’s, but it’s a property that speaks to him.  When he’s not doing that, he’s being a total household rockstar and helping with Daniel, cooking dinner several times a week, doing chores, and just generally being awesome.

Collin and Cyrus get to stay with us for all of July this year, which gives us lots of time to science and to explore.  They also put together a YouTube channel, mostly to post gaming videos.  Cy is following closely behind Joseph on the household rockstar path and will be learning at least three more recipes before he goes home.  Collin has a deep fascination with “old” technology and is slightly in love with my 1968 Remington Standard manual typewriter.  They still dress up to play every day, and I get the giggles listening to them make up stories.

Finally, my Gaia found herself a great job at an eye clinic, is taking care of her own bills and expenses and looks to be starting school in the fall at a community college.  She’s got a plan, a foundation, and a great guy. She’s so un-drama, it’s awesome – and also collects tattoos, which is awesomer.

In a nutshell

I still get stressed out and overwhelmed sometimes.  I kinda want to apply for a chaplaincy program at Children’s, but I also kinda want to take an insurance adjuster class – something to keep food in the fridge until the nefarious dreams come to fruition.  I’m really fortunate that I have a great foundation in my husband and family that I can weigh those kinds of options.

Am I still scared?  Of course I am, but I know we’ll get through whatever happens.  It’s just the human bits that get squishy sometimes.

April 12: to the Ex

Write a short letter to your first ex to send back in time to the day after you met, telling them what your relationship is going to be like and giving them advice concerning that. No word limit, but don’t beat a dead horse.

Dear Fuckface,

I’d like to say “stay home”, but then certain other positive things would never have happened, so I’m just going to continue with this:  A lot of things are about to go down over the next six months that you are going to horrifically regret in the long run.  You think you’re being clever, hiding the drugs and partners and everything, but it’s not worth it.  In fact, you already looked like an asshole, and after all that denying, you’re going to prove that you don’t look like an asshole, you really are, down deep to the core of your being.

In the end, you’ll think you have the prize, and maybe you do, for a little while, but your own views are going to come back to haunt you.  I’m not going to be there to point and laugh, or even to gloat.

I’m only telling you this right now because I know you won’t listen.  A lot of heartache and pain is coming to me at your hands, and your ego is screaming at you that I must clearly be mistaken, because you’re such a fucking prince, such a fucking catch…

You go on and think that, but remember this:  There are three distinct moments when I contemplate your murder and have ready opportunity and motive.  It takes a lot to get me to that point.  Recognize each of those, and you’ll live and I’ll stay out of prison.

That is literally the best that either of us can hope for out of this.  Circumstance won’t let us avoid the event itself, but our choices in the end… that’s on us.

Also, your taste in scotch, women, and drugs suck.  You have never been nearly as cool as you think you are.

 

ASIDE: If there was a way to get to where I am now without having gone through that, I’d do it.  Time and history does not work that way, and I’m grateful enough for where I am now that I can’t bring myself to regret it.

April 11: Let me count the ways…

Describe your current relationship status (and views) in haiku, 17 stanzas.

In all fairness, this
is a special exercise
just for my husband.

When we got married,
we exchanged vows just like this,
seventeen haiku.

But why seventeen?
That’s how many syllables
are in each stanza.

That was a few years
back, in his mother’s backyard,
the sun was shining.

I was terrified
because I loved him, wanted
him more than my life.

I knew it’d be rough,
especially the first years,
but my faith stayed strong.

There were nights I would
have cut out my heart, if I
could stop hurting so.

There were days when my
heart wasn’t big enough to
hold the love I felt.

I have learned so much
about things I thought were just
silly fantasies.

He’s shown me support
means more than just some nice words,
but real commitment.

Even in the hours
when he is at his darkest,
I can see his love.

He is my go-to
when I am struggling in
my own deepest dark.

He is the first one
to hear my goofiest jokes
– and they’re all goofy.

He is my blanket,
keeping me warm in the cold
of the crazy world.

He is my cool lake,
calming my frantic, nervous,
spastic, anxious mind.

The moment when I
asked him to marry me was
the best choice ever.

The words “in love with”
aren’t big enough to describe
what he means to me.

April 10: You put your weeeeeed in there

Tell your thoughts on mind-altering substances (alcohol, drugs, etc.). Do you like them? Which ones? Why? You don’t like them? Why not? Limit 500 words.

I’m a bit weird on this one.  I’m not a big pot fan, or rather, I’m not a big fan of getting stoned.  I’ve done it with a fair amount of regularity (every few years, does that count?), but it’s not been a go-to.

For normal, every-day use, a glass of wine is just fine… except it really isn’t.  I have a genetic abnormality that makes drinking alcohol kind of a crap-shoot.  If a certain number of factors come together – like going outside – I can end up with a massive attack where my skin feels like it has glass in it and my head is going to explode and all the things and smells and sounds and existing just hurts too much.  But a glass of wine or two is usually okay.

Hands down my very favorite thing in the world is to trip mushrooms.  I don’t get to do it often, but when I do, it’s an enormous treat.  It used to be that my preferred method was to trip alone.  Of the handful of times I’ve done it with a significant other, the experience has highlighted why the person was a Bad Idea.  The last time, though, was with my husband.  I was very nervous about that, afraid that maybe just the act of tripping mushrooms made me think bad things about the other.  Turns out, no, it really was just the company.  We had a glorious time together.

I’m all for the legalization of drugs in general, with the understanding that no one becomes an addict just because drugs are available.  It’s a complex problem, and reducing supply and access makes it worse.