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.

Leave a Reply

Your email address will not be published. Required fields are marked *