Friday, September 21, 2018

Fitful sleep

I have a Fitbit now.  That might not be news.  I can't remember, and can't trouble myself to do a search.  But I have a Fitbit, and I've been tracking steps and sleep for months now. 

I do this thing where I charge my Fitbit every day.  I used to charge it whenever it was low, but then I'd invariably charge it for hours until the battery was recharged, but while it was charging I'd feel like I couldn't move lest my steps not count.  And I use it to chart my sleep too, so it's not like I could plug it in at would I know if I slept or not??

Things were so much simpler before Fitbits, when you could "track" your sleep just by remembering when you went to bed and calculating based on when you get up how many hours that was.  But my Fitbit tells me about deep sleep and rem sleep and wakeups and all sorts of stuff that I couldn't see before, so...I can't charge it at night.

So anyway...I hop in the shower, and I charge my Fitbit for the 15-20 minutes it takes me to get ready, and then right before I get Lily out of bed and take her downstairs to start our morning routine, I unplug it and strap it back on my wrist. 

It never fully recharges.  It's always perpetually about 3/4 charged. also never goes dead.  There's always enough to get by day to day.  I was explaining this to someone when I realized I sleep the same way. 

Lily wakes me up at least once a night, I go to bed late, I wake up early.  But I have established this routine for so long that it seems normal to me.  I'm never fully recharged, but I'm also never empty.  I'm always running at about 3/4 charge. 

I was looking back over the past three years that I had a Fitbit, and there's only one day in the past three years where my sleep was 7 hours or more.  I've gotten close a few times, but for the most part I get about 5 1/2 hours per night...and as long as I get that little bit of charge, I seem to be functional.  Like my Fitbit. 

I don't know how many years of life this is draining from me, but for now...this is workable.  This is fine. 

Anyway, if you're not charging your fitbit while you shower, you're missing out on my sweet life hack.  But try to get more sleep.

Tuesday, August 28, 2018


Feeling a little...fragile(?) this morning.  No real reason why, I suppose, except the things you might expect (I had to triple check that I didn't just write "except" twice.  Anagrams are fun!) with an autistic 12 year-old starting "sixth grade".  My need for literal truth in description requires me to put quotes around sixth grade.  And that's part of the fragility.

Things have evened out with Lily over the past two years.  What was perhaps a heightened emotional instability brought about by her blossoming womanhood has dampened from the wild sine wave peaks and valleys of rage/happiness to a more comfortable/tolerable gentle sloping pleasant cuteness punctuated much more rarely by a slap or screamed no when she's sleepy or hungry or feeling thwarted.  The amplitude has decreased.

And that's good. 

She's found a bit of a groove.  She's content with her ipad.  It has become her almost exclusive form of entertainment.  She can spend eight hours on it.  And while it's so great to have her able to mostly also means her interests have narrowed to an almost laser thin focus and loss of battery/wifi means a constant stream of encouragement/delay/diversion to keep her on an even keel.  It has freed me up to go outside and do yardwork, checking on her frequently as she plays..."How you doin' Lily?"  "Doin' good!"  "Be right back!"  Giggle.  Repeat.  But it has me constantly second-guessing myself...should I be working with her more, should I be redirecting her to other interests, should I ...

One man's groove is another man's rut, perhaps.

This morning Lily started "sixth grade" and I found myself prepared for but also overwhelmed by the change in routine.  Lost were the rote preparations of last year, and I found myself playing catch-up as the bus idled outside in the cul-de-sac and I hastily pulled her shoes on over her socks, backing down the hallway as she followed me so that I could snap the traditional "first day of school" picture.  I didn't even have a chance to see if it was a "good one" before hustling her out the door and onto the bus.

"Smile," I said to her as I backed up and brought up the iphone's camera app.
"Say cheeze, pweeze," she replied, smiling as she followed me to the door.
Grab backback
Open door, and hold hands down the driveway.
Talk to bus driver about drop off.
Wave goodbye.
Watch the bus driveway.

The morning went well, honestly.  And I didn't start feeling fragile until after the hustle and bustle had abruptly ended.  My house was quiet, with Emma sleeping peacefully upstairs (one more day of 'freedom' for her) and it was like the ironically deafening sound that wakes me from sleep when the power goes out and my ubiquitous white noise cuts off as the fan stops.  I thought about the post.  So strange to think about, but so common these days.  Making time to post a picture of Lily on Facebook for her first day back.  Like all the parents do.  Only when I post it will be to say that Lily is starting "sixth grade".

And yeah...I don't need to label it with quotes.  But I do it in my mind.  Whether I put it down in writing or not, it's in my head.  I'm thinking it.  People with kids in traditional schooling...which is most people, I suppose, see that label and draw comparisons to their own kids and their own experiences and they just aren't the Sixth Grade that people...without proper explanation...can relate to.

Sometimes I don't notice how much she's's hard not to see from this pic.  My big girl.
This is Lily's third year at Watson.  Her goals are shifting.  Abandoned are the "pre-writing" goals.  Abandoned are the sight words and preparations for reading.  Abandoned even are some self-help goals; the jacket flip, a goal for the past 7 years, is now something to be tried, but not measured against.  And that's part of the fragility.

I never had a problem accepting Lily's adapted goals.  Some might have lamented the limit-defining nature of those adaptations, but I never did, trusting that the people who crafted them saw in her the potential for success when viewed through their experienced eyes.  So I feel a bit like a hypocrite now that they've relaxed their aims and I feel let down, my hopes deflated.

I feel like a hypocrite talking about how I accept Lily for who she is, as she is, when I feel upset or disappointed that she's not been able to crack reading or writing, that she struggles with potty training at 12, or that it is almost inconceivable to me that she will ever tie her own shoes, let alone don a jacket using the "flip method".

I feel like traitor to myself and to her.  I know I still accept Lily as she is.  I know I still love Lily as she is.  But I fell into the same trap every parent of every child stumbles into at one time or another.  I let my hopes/expectations cloud reality.  The truth is I have no idea where Lily will end up.  Maybe she will tie her shoes and read books at some point.  And I am absolutely fine if she doesn't.  I think.

I let her BSC go this past week.  It wasn't as dramatic as that sounds.  She was quitting anyway.  But we were supposed to meet and I just didn't see the point.  The BSC wanted to use her ipad as a reinforcer.  And I started arguing it over and over in my mind.  I started getting angry and bitter.  She doesn't really have any other interests.  She doesn't like dolls, or games.  She doesn't like stuffed animals or playing dress up.  She doesn't like opening presents or going trick-or-treating.

She likes her ipad.  And the Wiggles.  And McDonald's.  That's it.

And holding the ipad as a reinforcer to do what?  Learn to interact better with her friends?  She doesn't like playing with friends.  Learn to take turns?  She doesn't like playing anything that would require turns.  Teach her to converse with others?  The vast majority of her speech is scripted and rote, memorized for politeness-sake.  And while it feels a bit like giving up, unless I have someone specifically in my home to do "therapy" with her, who is going to work on those sorts of things with her?  Me?  I don't have the fucking time.  Because I have to feed her and her sister.  I have to keep my house clean.  I need to stay healthy and get sleep.  And honestly?  I don't want the time she spends with me to be "therapy".  So fuck the BSC.  And fuck the TSS.  And fuck "goals".  She can play on her ipad, because honestly this is NOT going to be the year that the TSS would finally break the "flip method" goal by using the ipad as a reinforcer where the previous 7 years doing the same thing failed.

And that's part of the fragility.

God damn that sounds bitter and dark and angry and angsty and that is SOOOO not my life right now.  Because although maybe that sounds like a rut, we've all been in a bit of a groove.

Emma quit her second job.  She's going to be getting busy again with school starting.  We had a great conversation (from my perspective) talking about "the right way to quit".  It's one of those things everyone has to do, and I felt great being able to guide her about the way I think is the right way.

She made enough money that she feels she can buy a car, and she continues to get better at driving, my white knuckles less the result of erratic steering than my own uneasiness letting go of the reins.  She'll take her test in three weeks.   Once she has her license it will alleviate some of the stress of getting her to and from work, or to and from the mall, or to and from her friends' houses, and that will make us both happier.

Lily is happier and healthier.  Her last seizure was over a year ago, and as I said, she's been a lot less angry lately.  Back to herself a bit, though she still struggles to regain her disposition following a nap.  But who among us doesn't?

I'm still seeing Angie.  We probably spend three days a week together on average in some form or fashion.  She makes dating easy.  She is sooooo goddamn nice.  Even Dobby likes her.  I lost my last babysitter and I won't have a new one until September, so our time has been less about eating out and attending events and more about cooking together or enjoying a backyard fire (the patio and firepit are finished by the way!) which allows me to eschew the services of a babysitter which I like for lots of reasons (staying at home with kids, doesn't cost me money, not worried about issues while I should be out enjoying myself).

We made pasta together this past weekend with Emma.  It felt so good.  The day before we picked up food truck sandwiches and brought them back to the house for my parents.  We played Telestrations together.  My sister called from the airport and I told her to come over.  She joined in.  Emma got home from work and she joined it.  The six of us played Telestrations and it was so fun.  I didn't realize how much I missed that kind of stuff until we started doing it again.  Not having to choose spending time with someone to the exclusion of someone else the way you're sort of forced to do when you first start dating, because you don't know how it's going to go.  I'm pretty content at this point with "how it's going to go".
shhh...they don't know I'm taking pictures.
So, yeah, this morning I was feeling a little bit fragile.  But despite the last minute haste it was a good morning with Lily.  And despite the fragility, we've all been in a pretty good place.  I can weather a little fragility now and again.  I've got support.

Friday, July 13, 2018


It's not you, it's me.  Two months since I posted last and lots to report. 

I had to go back and reread the last three blogs to see what I'd even said.  One was a walk notification.  One was about teaching Emma to drive.  And one was about the nurse quitting.  And...that's really it.  I've written other posts this year...but way back in January.  And all pretty general stuff. 


In February, I visited the doctor for a checkup.  His patients are primarily the octogenarian-set, so I think maybe him seeing me once every four months is a bit overkill.  Still, he saw me and my blood pressure was..."high". 

I've always flirted with high blood pressure.  When I gain a few pounds it drifts up.  When I lose a few pounds it drifts back to normal range.  It's often been labeled "borderline high".  My dad takes medication for it (for his blood pressure.  Not mine.  Don't be weird).  It's not super surprising that I would have it too. was "high".  Not "borderline high".  He prescribed me a blood pressure med and told me to come back in 4 weeks.  I found this...jarring.

Nothing like being the sole surviving parent of two kids and confronting the possibility that your elevated blood pressure is increasing your risk of heart attack...

I decided I would make some "lifestyle changes".  I told the doc to give me 4 weeks and if I hadn't brought my blood pressure down I'd start taking the medicine.  The appointment books were full for six weeks, so it gave me an extra two week grace period.

I struggle with between-meal/before-bed snacking.  If there are salty, crispy snacks available, I will eat them.  I resolved to do better.  I googled, "foods that are good for hypertension."  I added these to my grocery list.  I re-downloaded the MyfitnessPal app on my phone to track calories.  I started getting on the treadmill regularly.

I had success.  But...I didn't want to jinx it by making a big deal about it.  I didn't want to publish the great news and then report again 2 months later that it was crap again.  And, if we're being honest, there's probably only one other topic that people care less about than your "personal weight-loss journey" and that's your fantasy football team. 

So I won't bog you down with all the deets, but from the end of February to the middle of April, I had lost 15 pounds.  When he checked my blood pressure then he pronounced me "fit" and not needing the medication. 

That was not the end of it.  Since then I lost another 10 pounds, and 4 inches on my waist and the only clothes that fit are those that I purchased between about the beginning of June and now.  It's a great problem to have.  But it's expensive.  Still...I'm not complaining.  I left my yearly physical this morning with a clean bill of health.  (and a scrip for a fucking colonoscopy and endoscopy...yay aging!)

I'm not done, but I'm in a much healthier place, and I waited until now to bring it up.  It's consumed a lot of my time.  Every night on the treadmill then lifting weights.  Walking at work, walking at the mall on my lunch break (with the other elderlies...what?  it's gets really hot outside!).  I sort of made the decision to sacrifice sleep because something had to give.  I can work out until 10:30 or 11, but then I end up in bed 11:30 or 12 and I have to get up at 5:30...and Lily still is waking up at least once per night. fitbit (oh...yeah...bought one of those again too) goals are all green.  Except my sleep goal.  And yes, I know sleep is super important.  I'll figure it out.

Emma and I continue to slog away at her driving.  She's getting better.  I'm getting better.  We have an end goal in sight.  Her test will be a week after she's eligible by law (in September).  We're still trying to log hours.  She drives back and forth to and from her jobs.  Plural.  Last time we 'spoke' she was applying for another job.  She got it.  She's saving for a car.  Raking in the cash.

Lily got an aide.  The short version is (and I'm not really going to go into the longer version) that I asked the pediatrician to remove the skilled nursing requirement from her letter of medical necessity in order to make the position easier to fill.  It's been a year since we started this process.  In that time, I think I've had 4 months of coverage.  I spoke to the insurance company frequently.  I don't know what the tipping point was...I'm sure there's a procedure or guideline somewhere, but according to the insurance company they..."offered a higher rate" for Lily and...whatya know?  Someone took it.  And I really like her.  Fingers crossed she sticks around for a while.

"Offered a higher rate."  I'm of two minds on this.  1)  Thank you so much for offering the higher rate.  I had no idea what I was going to do this summer.  It was too much for my parents.  It obviously fixed the staffing issue.  2)  Why the fuck didn't you offer a higher rate six months ago??

I'm just letting it go.  I'm going to assume that there's a procedure that says they're not authorized to offer higher rates unless X months of no service or something have gone by.  It's better for my mental health to assume that's the case anyway.

I started seeing someone last year at the end of September.  I'm pretty tight-lipped about that stuff on social media.  At least I have been previously.  I think it was part "don't jinx it" and part "keep your options open".  Committing to someone is really weird and hard when there is still so much to unpack after losing your spouse.  Kids to consider.  The whole shootin' match.  So I'd been dating.  But I was really quiet about it in this space. 

She's really great.  A weird perfect match sort of great.  Like in an almost spooky too-good-to-be-true sort of way.  I'd always thought it was the differences between people that drew them together.  I remember the priest telling Leslie and I that what I loved about Leslie were the things I saw in her that I wished I had myself.  Apart from attraction, her organization, her mental compass, her stability.  Those were all things that I was lacking myself and loved about her.  And she made me better at all of those things to varying degrees.  With Angie (her name is Angie, did I mention?) we are sooooo alike.  So either she's an exceptionally gifted con-woman trying to bilk me out of my wealth (jokes on YOU, Angie, I don't HAVE any wealth!  HAHA!) or we're just eerily similar people who get along so well that we have not had a single fight in the 10 months I've been dating her. 

That's weird, right?  And amazing?  What's the record?  10 months and we haven't even gotten CLOSE to being in a fight. 

We've covered all sorts of relationship milestones...met the parents, met my father-in-law (it wasn't as weird as you might think), went on a road trip to NYC, met my kids, met her sister, met her friends...and many many more. 

Anyway, you should probably know that.  It's "new".  I mean, it's not really NEW new, but it might be new to you, in a, "Hey Jim, what's new?" "Oh, I've been seeing this girl Angie" sort of new way.
Surprise visit to NYC.  Angie, Like Sasquatch, moves too fast to be photographed in focus

OH!  Sidebar...I'm down 25 pounds and hardly ever drink so three drinks and I'm FUCKED UP.  Related:  so many calories in drinks.  Can't someone DO something about that?

I'm redoing my bedroom.  I put up brick paneling and then german schmeared it.  No, that's not sex stuff.  Look it up.  I'm repainting and getting new bedding and had this big historic map of Pittsburgh made (thank you, Angie!) and it's getting framed, and and and.  It's fun. 

starting to schmear
paneling up

Also, I'm having my patio extended in the back and a firepit put in.  Then I'm going to get new patio furniture. 

I've been busy. 

That's it for now.  Things are going really well.  I hope I didn't just jinx them.

Friday, May 25, 2018


Emma is driving.  Supervised, but she's driving.  The state of PA requires 65 hours of supervised driving over the course of no less than six months after she receives her permit to take her test.  We've been whittling away at that in increments of one hour or so for the past couple months.

They're little bite-sized packets of tenuously-controlled terror, but if I'm being totally fair, it's my fault.  She's doing fine.  She's doing better than fine.  She's doing great.  But I'm still scared shitless at least once or twice per drive, and I THINK it comes down to MY inability to trust that she sees stuff and will react appropriately to it.

I suck at roller coasters.  I suck at airplanes.  Honestly, I suck at being a passenger in most people's cars.  I involuntarily hit brakes.  I white knuckle "oh shit" handles.  I just suck at not being terrified at trusting other people to be in control of my safety.  And I'm no expert driver, so it's not that I feel I'm sooooo much better at doing it than other people.  I in control.

So for a couple hours every week, I give up control of the car and we barrel (carefully drive) over the road at break neck speed (typically at or below the speed limit) running errands or just getting into the practice of driving.

Have I lost my temper?  Yes.

But we're developing a system.  Reading through the driver's manual to get ideas how what/how to teach Emma how to drive (it's actually a "how to teach your teen to drive" manual) I found a gem about having her verbalize all the things she's doing in the car.  Apart from being a chicken about loss of control in general, I think particularly hard for me is just not knowing that she sees the things I see.  I am at war with I constantly teach (nag) her throughout her drive?  Do I give her credit and assume she's got it under control?

I think the answer is somewhere in the middle.  I harken back to a huge fight my girlfriend and I got in just after high school.  We were visiting her family in Denver.  She was driving.  I kept giving her directions.  In my head I think I thought it was my job in the passenger seat to be navigator.  She lectured me heatedly about it.  We fought and the car was silent.  I saw our turn coming up.  She was in the wrong lane.  I'd JUST gotten my ass handed to me for telling her to switch lanes.  JUST.  I didn't say anything until after the turnoff passed. 

"You just missed the turnoff," I said, helpfully.  Fight two was about recognizing the difference between nagging her about what to do behind the wheel and not helping her navigate to her family's house.  I my argument was that she'd just yelled at me for a half hour about not telling her how to drive so I was letting her show me how well she did it.  Passive aggressive...probably.  Yes.  Fine.  Definitely.  But really you had to be there.  I would NOT have won in that situation.  If I'd have told her the exit was coming up...but we can never know, can we?  Maybe she'd have been, "awww, thanks, Jim, I didn't see that!"  Plus I was like 19.  *side eye*  whatever.

ANYWAY...I won't NOT tell her about something that could potentially get us in an accident or going the wrong way like I did with my girlfriend all those years ago.  So we get into little spats, and honestly?  Honestly she's been handling THOSE really well too.

I got sidetracked.  The manual said to have Emma verbalize her observations and proposed actions:  "I see a yellow light up ahead, I'm going to slow down and stop at the red light", "I see the car stopped in the middle of the road with his turn signals on.  I'm slowing down in case he can't turn."  That kind of thing.

That stuff?  REALLY helps.  She doesn't brake the same way I do.  I want to hit the brakes now...and she's waiting...but if she at least tells me she sees the obstruction, and WILL hit the brakes, it lets me feel less like I'm waiting to die.

We're still not totally consistent at this approach, but it helps.  The other thing that I THINK helps her (I'll chat with her about it before our next drive, because I was just thinking about it a few days ago) but also helps me is providing her with the same narration in question form.  "There's a light up ahead, do you see it?  The car in front of you is signaling, so he's probably going to slow down to turn, are you ready to hit your brakes?"  That extra bit of communication is better than the...slow down, SLOW DOWN SLOWDOWN STOPSTOPSTOPSTOP that I'd PREVIOUSLY been using.

It's scary, but it's not scary because she's doing a bad job.  It's scary because she's driving a car for the first time and accidents happen...even to me...and it makes me nervous.

She applied for a second job.  She's decided she wants to save for a car which I honestly think is amazing.  So she applied for a second job and she has her second interview tonight.  She's got hustle.  I mean...everywhere but at home.  (I sat on this post for a day because I was going to add pictures and then I forgot, and in the mean time she got the second job.  Woohoo!)

I parked a trash can, HER trash can in front of the door to her room after taking out her garbage last Thursday.  By Saturday I was posting snapchat stories with "Day 3" to 'help her remember', but by Day 4 I finally got fed up and asked her to put it in her room.

Clothes on the floor, in some cases inches from the empty laundry basket.  Bed unmade unless I specifically tell her to go back upstairs and make it before school.  It feels like it's a constant battle against entropy.  And entropy always wins.  Never bet against entropy.

She's learning the discipline of completing her homework though.  That's almost entirely on autopilot.  She still slips into bad habits at the end of the quarter or school year, but her grades are better, and I rarely have to tell her to get school work completed.

And she's nervous.  All this shit is coming at her fast now.  She's at the end of her sophomore year and they're starting to pressure the kids to decide what they want to do for the rest of their lives.  Next year we'll start looking at colleges...maybe applying...touring.  It's a lot.  And it's scary.

And it's bittersweet.  At least for me.  I may never be a true empty nester.  Lily will almost certainly continue to live with me throughout adulthood.  But Emma is THIS CLOSE *holds thumb and finger imperceptibly close together* to being off on her own.

Driving, college, graduation, they're all just an eye blink away.  Just like everyone said 16 years ago when she was born.

Monday, April 2, 2018

We're Walking!

It's here, people!  The walk is here. Man, it snuck up on me again.  Maybe it's better to be a total pain in the ass to people about it just so everyone knows it's coming versus trying not to inundate people with reminders.  Well, regardless...we're basically six weeks away.  The walk is May 12th!  It's time NOW to register and donate, and send me your tshirt sizes so I have enough time to purchase them. 

Regarding the tshirts...when you register to walk or donate or whatever there's a place on the registration form that prompts you for your tshirt size...this is for the Highmark shirts...NOT the Justalilwalk shirts.  I can't even see what you enter there, so if you're walking with us in May...please please please reach out to me on facebook/twitter/ig/text/email or...if ALL ELSE and get me sizes. 

The walk is always a blast and it raises money for a great charity that directly benefits autistic people (both children and adult) and their caregivers.  So...Register now at the link below!!

Link to just a lil walk team page!

Tuesday, February 13, 2018

Another One Bites the Dust

Lily's nurse quit.  She gave her...10 minute notice yesterday  I'm supposed to hear back from the agency sometime today, but haven't yet.  Not sure what they're waiting for, but my dad is getting Lily off the bus today, so at least we're covered.

So the saga of getting/keeping an aide continues. 

At issue is Lily's aggression.  Here's where being me (someone who attempts to see both sides of the situation all the time) sucks.  Because I get why she quit.  She doesn't want to get hit or kicked or bitten anymore.  All that is a slam dunk.  I didn't want that either.  I am NOT a huge fan of coming home to what amount to "I quit as of this moment", but it's definitely hard to deal with aggression.  So because I understand the "why" of it, it makes it hard for me to call her the "bad guy" in this situation.  And yeah...probably I'm putting too many things in quotations in this paragraph.

The devil's advocate side of me, however, is wondering why this nurse struggled so much with Lily.  Even when Lily IS aggressive with me...she only ever actually hurts me when I'm stupid enough to play chicken with her, holding my hand or arm or fingers too close to her mouth when she's really really pissed off (bite!).  But the slapping thing?  Scratching?  Kicking?  She's 12, low muscle tone, significantly uncoordinated (I mean, I still help her down the steps), how hard is it to dodge a slap?  Or to catch a foot and hold it when she tries to kick?  That's a trick question...I already know the answer is...not very fucking hard.  Because I do it regularly.

Whatever this nurse's approach antagonized the shit out of Lily, because nobody has EVER struggled with her like that.  Each day I'd come home and listen to the nurse...basically tattle on Lily.  It was stressful as fuck.  I couldn't wait until she was out the door every day and my family could just chill out again and relax.  Because honestly the minute I walked through the door, everything was fine and normal.  Manageable. 

Sigh.  Back to square one.  We'll see what the agency offers. 


I remember when I first moved to Pittsburgh and asked people directions to things.  Apart from the fact that Pittsburgh's winding roads are gridless and confusing, people would tell me how many minutes it was from point A to point B.  I can't remember who I asked, maybe it was Leslie, but I remember asking, yeah, okay, 15 minutes, but how many miles is it?

And she (or whoever it was) had no idea.  I couldn't believe it.  Nobody knew how far anything was from anything else.  It was X minutes.  It was hard for me to get my brain around.  In Montana everything is X miles.  YOU decide the minutes based on how fast you drive.  It's 40 miles from Big Timber to Columbus.  40 minutes for some.  30 for others...

I literally just realized this a couple nights ago, but nobody knows how many miles it is, because there aren't what would have to be hundreds of thousands of signs with miles posted on them.  Sure it's like that on the highway, but in the metropolitan sprawl of Pittsburgh and it's surrounding just can't post as many signs as it would take. 

How did I not put that together?  Back then I just thought if someone was going from Shaler to Dormont, for example, there'd be a sign that said Dormont 10 miles.  But...there isn't because there's no Shaler to Dormont expressway.  It's just a bunch of different neighborhood roads and a few miles of parkway.  (They should really fix that)

Anyway...I realized it on my way home, looking at the GPS, which tells me both how many miles and how many minutes.  And I remember thinking...who the fuck cares how many miles it is?  I need to know how long it'll take.  And right then I thought...oh my mouse was visiting the's just a very different frame of reference.  10 miles might take 30 minutes.  Or 45 with traffic. 

In Montana it's just a simple equation.  Distance/velocity = time.  That equation doesn't work in the city.

Wednesday, January 24, 2018

On Writing

I have a LinkedIn page.  If you're on Linkedin, you already know this, but if not, it's supposed to be a networking tool.  Social media for professional use.  On it, I have myself listed not as a project manager with a degree in Chemical Engineering, but as a writer.  *shrugs* 

I figured I could use it as sort of a starting point for freelance work.  I do that from time to time (Healthline, Childswork, etc) so I figured I'd create a writer's professional page.  But...

I don't think of myself as a writer.  Maybe a blogger.  But not a writer.  Writers write novels!  I blog, sure, but...I've always wanted to be a writer.

I was on twitter the other day and saw a link to a podcast about a writer talking about the writing process.  I started listening and found it really entertaining, but the reason I'm bringing it up is not because I think you should listen to it (although go ahead and's called "Launch") but because the headline eye-grabber said something like 3/5 people want to write a book, but most don't make it past the first chapter.  This...seemed rightish.

And I guess I am firmly in the 3/5 camp, I also "most"?  I hope not. (also...hope I am not moist, if you misread that too, I am not moist)

I decided to write this post this morning.  It's been sort of in the back of my mind for years.  What makes a writer?  I've read so many quotes from writers about what makes them write, or what it takes to be a writer, and like anything the opinions vary widely.  So I guess I'm writing this not so much to explain (as someone who doesn't consider himself a writer) what a writer is, but to help myself understand whether I can/should be one of the "not most" who makes it past the first chapter. (If you keep reading most as moist because of the sentence in the previous paragraph then you're not alone.  I sorta wish I'd never typed that part.)

So the first questions I asked myself are the absolute easiest ones:

1)  Do I possess the ability to write
2)  Do I possess the desire to write
3)  Do I have a story to tell

And I think writing stems from that.  Maybe there's more to it.  But I think you can break it down to those things.

The Ability to Write:

I'm not talking about being literate.  I mean, I sort of am, but I'm sort of not.  Can I write?  Can I put together sentences in an interesting way that readers might enjoy? 

There's a whole rabbit hole there... "readers might enjoy" that I'll discuss a little bit in the second heading, but I think I have the ability to write.  I've written this blog for years.  I get great feedback on my writing.  I feel like I have a definitive voice that is recognizable and genuine.  In short:  I think I have the ability to write.

I'm aware I have a SHIT ton of bad habits, not the least of which is using phrases like shit ton, or capitalizing entire words for emphasis, or using the hell out of ellipsis.  But I guess my hope is that if I were able to put together a decent enough manuscript, written and rewritten until it makes sense, an editor could help me do away with the excessive/unnecessary punctuation, and help me make a good thing better.

The Desire to Write: 

Here's that rabbit hole I was talking about.  I don't know what motivates a 'good writer' or just a writer in general.  I don't know that it should be "what readers might enjoy" as I said above.  I do think that to consider the idea you may want to write and get paid, you have to consider whether or not readers will enjoy it. 

I can certainly understand the idea that you might be motivated strictly by the story, or the process of writing, or self discovery, or whatever; that things like "what OTHERS think" should be an afterthought and that you should be writing because it's what YOU want to do.  And yeah...I think all of that makes sense.  If there's a story you need to tell...then tell it.  And don't worry about whether readers will like it because it's about something YOU need.  But my point here is...I think motivation to write can come from all over the place.  Lots of angles.  Lots of sources.

I was listening to "Ender's Game" by Orson Scott Card.  At the end of the audiobook he has a monologue where he discusses how the book came to be.  He references another author's quote that I tried really really hard to find before I wrote this post.  But I couldn't.  The gist of the quote was that authors decide to publish books for two reasons (I don't necessarily agree with this entirely, but I totally get the idea):  1 - because they've read a book by someone and they think, If he/she can do it, I can certainly do it.  Basically, the book is not great and you think...jesus, *I* should be writing.  Or 2 - because they've read a book by someone and you're inspired to write just by reading them.

I can cop to both of those feelings, and while I think there's at least one more...3 - because there's a story they need to tell.  That one doesn't stem so much from a third party's work, but from within.

I have all of this.  The beauty of me breaking this into very basic items is that if it turns out in 10 years that Jim Walter never wrote a book, I can STILL be right about the premises stated by throwing myself on the argument that in hindsight I guess I did not possess a TRUE desire to write, or perhaps I didn't ACTUALLY have the ability.  Or maybe there really WASN'T a story I needed to tell.

And if we're being honest, I'm not positive you NEED to have a story to tell as long as you can come up with one in your process.

A Story to Tell 

 For years this blog has been my "story to tell".  The story of my family has been one that I've loved.  Even the bad stuff has been cathartic to write about.  Is that the story I'd want to tell in a book?

I always fantasized about being an author who wrote the sorts of things I read.  I read mostly fantasy/sci-fi as a kid, and it's still a pretty heavy percentage of my literary diet.  I wrote a couple things on a lark.  Fictiony things.  I'm not good at it.  I think it's one of those things that gets better the more you do it, but I reread the fiction that I write and think...this isn't me.  It's hard for me to find my voice when I'm writing fiction.  Maybe my voice doesn't lend itself to fiction.  I have bandied about the idea that if I wrote fiction, I would write it in first person, because my voice DOES lend itself to a more laid back, casual, profane sort of first person narrative.

I think I have stories to tell.  I feel like the blog itself is proof that I have stories to tell, and I just have to know whether those are the sorts of stories I want to write something larger about...or if I REALLY want to make them up. I most?  Until I write a book, I guess I am.  I'm 3/5 people who want to write a book but can't make it past the first chapter.  Until I'm not. 

Getting Down to Business

If I fill in all the checkmarks above, what's stopping me from making it past that first chapter?  I'm just thinking "out loud" at this point.  I've written a rough outline.  I've started what I want to write.  I was excited because I had a few pages under my belt before I quit for the evening.  And...that was a week ago.

There are a lot of really good reasons why I haven't returned to what I've written.  Some of them are valid.  Some...not as valid.

I'm busy.  If you've read this blog, you know I'm busy.  You know why I'm busy.  You know that it's not the sort of busy you can excuse yourself from.  This is family.  This is single parenting.  This is life.  I have a full time job.  It pays the bills.  Writing will only ever be something I wished I had more time to do until I am no longer working full time.  Quitting my job to be a writer isn't where I am right now in life.

Sometimes at night I choose "sleep" over writing because I've gotten so little of it, and honestly, how can you write if you're falling asleep as you type anyway?

But apart from the need to sleep and work and parent...and stay fit etc etc...there's the procrastination.

The irony of avoiding writing a book by writing a post about why I want to write a book is not lost on me, I assure you.  It is the ultimate irony.  I'm a procrastinator.  Deadlines are the carrot on the stick that moves my donkey cart.  And there's always tomorrow.  I'll start tomorrow.

I can't remember what author said this either, but I read an author that said "write every day".  A lot of authors have said that, but this one specifically said...just write your book.  Don't character develop.  Don't world build.  Don't draw maps.  Don't look for an agent.  Don't brainstorm cover art.  Just write.

I consider looking for an agent.  This is me procrastinating writing.  What would I pitch to the agent?  I haven't written anything yet?  I consider writing a blog post about writing a book.  Why not just write in the book?  I need a new carrot.

Self discipline is the problem.  THAT is what is holding me back.  Me.  If I am to prove to myself that I truly have the "desire to write" then I have to get busy and just do it.  Maybe a little procrastination long enough to set goals and rewards for myself.  But then just get down to business.

I have a goal in mind.  I will write a book.  This book does not need to "appeal to the masses".  This goal book is just to prove to myself that I have it in me to complete a book.  The end goal at some point may be to get a book published.  But right now the goal I'm looking at is "write a book".  A good book, Jim?  A book.  A publishable book?  Just a book.  A long book?  I fucking said just a  book, okay??

Anyway, that's where my head is. 
Short term goal:  I will write every day (when I'm able)
Long term goal:  I will write a book
Longer term goal:  I will publish a book (self publish even)
Longer Longer term (this is how writers talk I'll bet) goal:  Get a book published
Longest Bestest term Goaliest Goal:  Make millions writing books

Monday, January 22, 2018

The Big List Of 50 Cheerful Things

I can't honestly say what prompted me to remember this.  I often forget it for long stretches of time.  Maybe it was that I was feeling down, or maybe I saw something that cheered me up and was on the list, but a long time ago (longer than three years ago (more on that in a minute)) I created a list of "cheerful things".  They weren't necessarily things that, by themselves, made me happy, they were just cheerful.  And sometimes cheerful things CAN jar you out of a blue mood, or at least nudge you in the right direction.  So I posted it on Facebook in notes or someplace that I was never really able to consistently find, and then a few years later Facebook added a feature that allowed you to "save" things, so I did that and was able to finally find the list when I wished...or remembered.  Like now.

I say "longer than three years ago" because that's when Facebook says I posted, it, but I'm almost positive it was more like five years ago, and I copied and pasted the list into a post of some kind, and THAT is what Facebook is saying is three years old, not the list itself.  You can comment on it here:  The Big List of Cheerful Things

People commented on it, and I updated it with the ones I agreed with, encouraging people to write their own lists since I didn't agree with them all.

For your perusal, comment, edification, I have pasted it below, complete with new items.
  1.  Happy toast (cinnamon and sugar on buttered toast)
  2.  Honey bears
  3.  Balloons
  4.  Daisies
  5.  Bubbles (like with wand in the bottle)
  6.  Sunshine
  7.  Rainbows
  8.  Cotton candy
  9.  Baby animals
  10.  Limericks
  11.  Children's laughter
  12.  Purring of cats
  13.  Being licked by dogs
  14.  Swimming
  15.  Berries
  16.  Dancing
  17.  Sunflowers
  18.  Getting mail
  19.  Listening to the rain
  20.  Twizzlers
  21.  Eating sunflower seeds
  22.  Making a snowman
  23.  Cookies
  24.  Eating watermelon
  25.  Photo bombing
  26.  Dog's wagging tail (especially when it thumps accidentally against things)
  27.  Baby toes
  28.  Maple tree helicopter seed pods
  29.  The first crocus blooms
  30.  The creaking sound of a new book opening for the first time
  31.  The smell of old books
  32.  The deep bass thumping sound of closing a large book (yeah...I guess I really like books)
  33.  The smell of freshly brewed coffee
  34.  A campfire
  35.  Roasted marshmallows
  36.  The tug of a fish on the line
  37.  Finding money in your pocket
  38.  The jingle of coins/change
  39.  Skipping
  40.  Running downhill
  41.  Seeing home after a long vacation
  42.  Popping bubble wrap
  43.  Amusement Parks
  44.  The sound of surf
  45.  The sizzle of bacon in the pan
  46.  Getting the first scoop from a jar of peanut butter/tub of butter/container of ice cream
  47.  Unexpected compliments
  48.  The feeling of soft soft fur
  49.  Popcorn
  50.  Watching animals goof off (pandas, dogs, otters, baby sloths...doesn't seem to matter)
This is not a complete list, so if you see any glaring exclusions, please share.  

Tuesday, January 16, 2018


Is first post of 2018?  Huh! 

I was just looking back at 2017.  20 posts last year.  That's actually the lowest I've ever posted since blogging.  And it's not that there's nothing to say.  I've been busy.

So...lots to say, lots to talk about...


This morning I was putting peanut butter on my english muffin and I thought I might have dropped a bit of peanut butter in my coffee, which was sort of in the line of fire, peanut butter ballistically speaking.  This is not to say that I fire peanut butter at my english muffin with some sort of peanut butter gun (*note to self:  see if peanut butter gun has been invented yet), it was just that a little bit dropped off the knife and landed (maybe?) in my coffee.  The surface of the coffee was moving, but I couldn't remember if I'd bumped the mug, or if what I THOUGHT happened actually happened.

I decided at length that if the worst thing that happened was my coffee had a hint of peanut butter flavoring it would be a nice opportunity to see what kind of pairing it made.  I took an experimental sip of the coffee.  Not a hint of peanut butter.

This morning was the nice happy Lily sort of morning I really needed after last night. 

Chapter 1:

(4 weeks ago)

I got a call just prior to Christmas from an agency with a possible nurse for Lily.  One lesson I learned from past meet and greets were that if you schedule conveniently you lose.  Looking a week or week and a half out means that person has time to get OTHER interested offers of meet and greets and I've had several who just didn't show up because they'd already accepted other offers before they even got to meet us.  I couldn't schedule the same day, but took a half day off to do the meet and greet the next day.  She showed up around noon.  She nurse seemed nice.  She had a lot of experience.  She confessed that she had to be gone before 2:00 in the afternoon to go to another meet and greet (so glad I didn't wait), and although previous meet and greets had only lasted 15-20 minutes, she was probably at the house for an hour and a half.  In the end she had to rush out the door to make it to her next appointment.

She accepted the position a couple days later, then we scheduled her clinical supervisor to visit and go over paperwork after the new year and the holidays were over.  All that went off more or less without a hitch, and the nurse started on January 3rd.

As you might imagine, I was extremely relieved.  Knowing that a nurse had been found prior to Christmas was such a gift.

Chapter 2:

(Three weeks ago)

My BSC (Behavioral Specialist Consultant) quit.  She quit because she is moving, and so her last week was a week ago.  The agency for the BSC called to tell me they don't have someone to replace her and asked whether I wanted to wait, quit, or be transferred to another agency.  This pissed me off.  Lily's behaviors recently have been worse not better, so to have an "expert" able to put eyes on her and work through those issues is a great way to keep me from...well...from losing my fucking mind.

In all honesty, I was not impressed with this BSC.  I didn't ever really feel like she had her finger on Lily's pulsebeat.  She wasn't a great fit.  So I'm not exactly weeping that she's leaving so much as I am weeping that they have nobody else to replace her.

So I thought, okay..."I'll go with option 1...wait".  I figure, fine, let them hire a new BSC for the case.  I like the TSS (therapeutic support staff) that worked under the BSC, so as long as she continues to work, I'm good.  The agency called to express some concern that the TSS wouldn't be able to work unguided by a BSC, but I more or less said...then find someone to oversee her in the interim, and they more or less agreed.

So last week the TSS quit.  She said she felt uncomfortable working without guidance from a BSC so this is her last week with Lily.

This pissed me off all over again.  Lily has been tough.  That's why I have them.  If Lily was easy...if raising Lily was like raising Emma...I wouldn't qualify for the support they provide.  If raising Lily was like raising Emma I wouldn't need or WANT the support they provide.  So at this point I'm feeling a bit abandoned.

But hey...I've still got that nurse.  Which is nice.

Chapter 3:

(Two weeks ago)

I'm raising TWO young women now.  The ticking red time bomb went off and was fine.  I have a nurse after all!  She spotted it (no pun intended) and we talked it out.  We discussed the plan.  We executed the plan.

I don't know how cyclical she'll be initially, but I'll monitor what I need to monitor and try to see if I observe bigger behavioral issues at certain times relative to others.

Her outbursts now are more...violent.  I really hesitate to say that word.  I don't like how it sounds.  I've been reading autism blogs for years.  I don't want Lily to be considered "violent" or "dangerous".  I've read the blog posts about violent boys (or girls).  They scare me.  She's just a little girl.  But...the ineffective slaps of years gone by have become more...deliberate.  Now instead of ineffectually swatting the air near me when she's really upset about something I'm making her do...she'll target me...aiming and slapping.  Ultimately it's still delivered with the low muscle tone of a slightly behind-development 12 year old girl, but she's pursuing it.  When the TSS really upsets her she will follow her and try to slap her if she misses.  This is all new.  And not wonderful as you can imagine. Which, probably, is why theTSS quit, if we're being honest.

I unwillingly project her six years into the future, a "violent" 18 year old...responding to a policeman or a stranger with slaps and bites..."dangerous and violent" adult now...charges pressed.

I slam a mental door shut on that sort of speculation, compartmentalizing it.  When will she be out of my care, after all?  When would this situation come up, where I wasn't there to keep her from hitting someone who didn't understand that she really doesn't know any better. Because I'll always be there for her.  Right?  Always...

Fine...even if I get too old, there's always her sister.  Even though I promised myself I would never make Emma her caregiver.  Would always make sure Emma could lead an independent life free from the responsibility her parents chose if she wished.

But she could help, right...?

Chapter 4

(last weekend)

I went on a date.  Oh...I'm dating by the way.  That's just a whooooooooooooooooooooooooole nuther blog post (or...probably not actually).  Sorry.  If you thought this was about's not about dating.  But...I went on a date.  I left Emma in charge.  At 15, nearly 16, she knows Lily probably about as well as all but maybe five living people.  She's the right age.  I trust her.  She loves her sister.  She's done it before.

But the second course of my meal was delivered to my table, I got a text from Emma.   "Lily is acting out a lot and now she is full out sobbing and idk what to do".

I tried from the table to text suggestions, apologetically focused on my phone as I communicated with Emma.  This served to piss EMMA off, who apparently interpreted my suggestions as a criticism of how she was handling the situation.

I texted my parents.  They were already going to my house anyway.  Emma has never felt really comfortable feeding Lily, and she needed a ride to dance, so my parents had agreed to watch the Steeler game from my house, feeding Lily and giving Emma a ride.  They weren't there yet.  I asked them to hurry.  Emma had already texted them.

By the time they arrived Lily had settled back down.  The upset happened in the bathroom.  She didn't want her pullup changed.  If she can't hit you, she starts grabbing things...toilet paper, towels, shower curtains, garbage...anything she can reach. 

Emma handled it as best she could.  But I was forced to it fair?  Is it fair to ask Emma to babysit Lily anymore?  If she's truly becoming "violent" is that something I can, in good conscience, ask of Emma, a 15 year old?  I...don't think so.  Unless and until I can get Lily's latest behavior more or less under control, I have to save Emma for an absolute emergency.

Chapter 5

(two weeks ago (again))

I met with Lily's developmental pediatrician.  Her behavior had seemed better at that point.  At least I thought so.  We talked about all the blood work he tracks.  Zinc and Calcium, gluten, ratios, indices.  He asked me to check with a specialist about something he called a "movement disorder".  He asked me to check with another specialist about some vision disorder.  I don't have my notes handy.  I can't refer to them.

To add to the running tally that's...a neurologist, a neurosurgeon, a geneticist, adolescent medicine, a developmental pediatrican, a vision specialist, and a movement specialist.  That's in addition to the primary care physician, eye doc, and dentist.  I just sort of chuckle mumbled...."mmmmooookay dokey!"  Load me up, motherfucker!  Let's make some appointments!  WOO!

BUT...he gave me sort of his take on a plan of care.  In a nutshell...before doing anything else, get the seizures managed.  This was placed as sort of an order of magnitude higher in the grand scheme of things. helpful.  Okay, so regardless of whatever else I need to do, step 1 is getting the seizure disorder under control. 

And although Lily hasn't had what anyone (caregiver du jour) might consider a seizure in months, it's not currently being "managed".  Still waiting for a prescription from the neurologist for that.  Once that's done, we can move on to the next thing.

What might this new seizure med do to/for Lily's behavior/sleep?  No idea.  Each new doctor's visit is a new lead to pursue.  Each new discovery is only the stepping off point for a new investigation.  Oh...she has THIS?  Check with this doc, and run this scan, and we'll meet again in a few months.  Months pass and a bit more of the puzzle of Lily gets revealed but ultimately we just see...more puzzle.  This process has been going on for 11 years.  11/12ths of Lily's life, and the percentage will just increase over time.

Wish:  One doctor who could look at it all and tell me what to do for her.  One doctor that could tell me that this behavioral component is probably the result of this aspect of her condition and the best thing to do is X.

But there isn't anyone who can do that.  That person doesn't exist. 

When I was five I remember I was outside our home in Culbertson, Montana with a broom.  I was sweeping back and forth across the dirt beside our sidewalk.  I found it unsatisfying because I kept sweeping the dirt and although it was fun to watch the plumes of dust boil around me (god my laundry must have been a fucking nightmare) no matter how much dirt I swept...there was just more dirt underneath.  I mean obviously.  Because I was literally sweeping the bare ground.

My point is...that's where I feel like I'm at right now.  I'm trying to clean up...see improvement...ANYTHING.  Just more dirt.

Chapter 6

(Three years ago)

Sorry mom.  I'm going to bring this up again.  Please understand this is not just something my mother said.  She did say it though.  And I instantly blew up.  Or maybe I didn't (I can't actually remember).  Maybe I just boiled about it and we talked later.  I think I did though.  I remember we talked about how frustrated I was after the fact and she apologized and we made peace and she understood.  But it wasn't just was EVERYONE.  EVERYONE does this.  But this story is about the time SHE did, because it's just...well it fits the above better than any of the other stories.

Lily was playing on the special needs baseball team.  She didn't really love it.  She was an unwilling participant in a sport where participating is basically the whole point.  And so ultimately I stopped forcing her to go. 

Lily was funny to watch at times, although honestly I was mostly stressed the whole time because the skill level/competence of the volunteers that they paired with the kids like Lily was highly variable.  And not everyone had great success with her.

Anyway, I remember it really took a lot to get Lily to go to first base after a "hit".  She'd hit the ball hand over hand and then everyone would yell "RUUUUUUNNNN!" and she'd walk, slowly, with some stops along the way, before she would finally stand on first.  This was mostly amusing, because Lily doesn't do what Lily doesn't want to do, and so it's easy to reframe the situation as Lily just being adorably strong willed and not interested in hurrying if she doesn't WANT to hurry.

My mom earnestly said to me that we needed to work on Lily running to first.  And I think I blew up.  I think...(honestly, i probably already blogged this, but I couldn't find it)...I basically said..I have a hundred other goals that are more important than 'running to first' that I'm making no progress on.  She's not potty trained, she can't tie her shoes, she can't write, she can't read, and you want me to work with her on running to fucking FIRST??  Let me add that to the list immediately! (sarcasm).

It was the combination of every thing we "need to work on", and everything we weren't seeing any progress on.  It was the "one more thing" that was ultimately meaningless and probably half meant in jest, that if it had been almost any other kid...or any other NT (neurotypical) kid, would have been no big deal.  Sure...add it to the pile.  But instead, because it was Lily, it was...ARE YOU KIDDING ME???

 And so we talked about it and I think my sense of powerlessness and frustration was adequately conveyed and mom and I were back on steady ground again.

But I bring the story up because each of these doctors or behavioral specialists always adds just one more thing in the vacuum of medicine that says "I only care about those things specifically under my specialty and nothing else".  It's the...why don't you go get her checked out for movement disorder.  It's the...we need to see about this visual disorder.  It's the...let's get her seizures under control first.

And, she's still more or less the same little kid she's been since she was three.  Many of the same behaviors.  More or less the same skill set.  In hindsight it's really hard to see any progress.  I'm sweeping bare ground and trying to clean it up.  It's not fucking working.  Nothing is fucking working. 

Or at least that's how it seems when things get dark.

I long ago stopped trying to mold Lily into something she wasn't.  Although I may not know what she someday might be, I can see relatively clearly some that she will not.  She will never be independent and on her own.  She will be in someone's care.  So we work on goals, but I don't care about goals anymore.  I'll never say "she can't" without seeing if she can, but I no longer care if the answer is "she can't".  She's Lily.  I love her unconditionally.  Whether she ever EVER learns to read or write or tie her shoes.  Whether she's every fully potty trained.  Whether she becomes violent toward me...I love her.  No matter what.

Chapter 7

(Last night)

At 2:23 I got a text at work from the nurse. 

"Jim I don't know what you want to do.  Lily has been in the bathroom now for almost an hour throwing a fit every time I try and go near her.  It's hitting, scratching, trying to bite me.  Do you want to try and call on speaker phone to talk to her or is it okay if I ask Emma to help?"

Remembering the weekend, where Emma had struggled with something similar, I asked Emma instead to facetime with me and talked to Lily via her phone/video.  We couldn't get her out.  The nurse couldn't get near her.  Lily kept grabbing her much spitting.

After trying a few things, I gave up, took the rest of the day off and drove home from work.  She was still in the bathroom when I got there.  I got her up and changed and in bed and told the nurse to chart and go home.  We talked for a while about strategies.  Talked for a while about things to do the "next time".  She was apologetic.  I'm sure she wished she'd been able to handle it.  But...she hadn't.

I asked my parents to shadow her for the rest of this week, stepping in to help if Lily got out of control.  Letting Lily get used to the nurse's presence.  Maybe there hadn't been enough transition to develop the relationship.  Maybe she didn't "recognize her authority".  I don't know.  I do know that Emma had almost THE EXACT ISSUE a day or two prior and that certainly was not a case of developing a relationship.

Maybe it'll help.  I'm worried the nurse will quit if it doesn't get better.  I'm powerless to make it better.

Lily was spitting so much last night.  It infuriates me.  Gets under my skin.  With slapping, scratching, spitting and biting, I was at the end of my proverbial rope.  Strung out.  No patience.  No temper.  YELLING.  So much yelling.  Then things would be okay for a while...then back to BAAAAAD.

And I thought again about how hard it is to do this shit alone.  Not alone alone...I mean, in this post I rattled off 12 possible doctors, a nurse, Emma, the grandparents...but I mean as a single parent.  One of the things that Leslie and I did for each other was tag out.  Tag out when you've had all you can take.  Tag out when you're too tired.  Let ME take over for you.  YOU take over for me.  There's no cavalry here anymore. 

And I was depressed.  Powerless to stop myself from projecting once more into that dark future.  If a nurse can't care for my daughter when I'm not around, who can?  How can I always be around if I need to work?  What will I do when I'm too old to care for her?  And I started thinking about medications...something to calm her, mellow her out.  You know...all the medications I SWORE I would never use.  And then I think...can't try any medications until you get those seizures under control.  JESUS.

RTF (residential treatment)??  Can't thing about that.

I felt like writing last night.  I felt like sleeping last night.  I felt like reading last night.  I felt like crying last night.  I felt like exercising last night.  I felt dull and sad and...emotionally brittle. 

I sat in my chair in front of the TV and turned Rick and Morty on staring at it until I nodded off.  Eventually I collected myself and turned off lights and put away dishes and refilled my water and went to bed.  I finally got to that place I thought didn't exist.  The..."I don't have time to __________" place. 

Each thing excludes all the others.  I wanted the cathartic unburdening of soul that comes from writing.  I wanted the mindless entertainment of reading.  I wanted the frustration burning exertion and improvement that comes from exercise.  I wanted the self indulgence of just letting loose a sob or ten.  But I knew that Lily would be up at 4 a.m. and I hadn't slept well the night(s) before.

So I slept.  And Lily woke at 4, and we sat on the potty and then back to bed.  At 4:15 I went back in and settled her down and she fell asleep until I woke up around 5:30.  Perhaps not quite refreshed, but at least in a much better mindset.

Chapter 8:

(This morning)

The snow fell steadily last night, covering my driveway with maybe two inches.  I knew I had to get out and shovel it, but it's hard in the mornings...half watching Lily, half outside shoveling snow...and I didn't know how Lily would be.

But she was angelic.  Happy.  Bubbly.  Asking for things and then satisfied with those things once given.  Compliant.  She was upset about having to put on a bra, but what woman isn't?  She got over it.  Ate well.  Was excited for the bus.   She was so pretty in her new shirt and pants from Christmas, her hair freshly butchered (fuuuuuuuck...I really need to learn how to cut bangs) playing "What's in the lunch box" on her iPad while I puttered around the kitchen.

I cleaned off the driveway just in time for the bus to pull up to the driveway, the brakess squealing protest as it slowed to a stop.  I put the shovel down, walked inside and collected Lily.  We walked happily down the driveway and I waved her off to school. 

School can handle her.  School knows how to manage her and keep her happy.  I feel better knowing she's on her way there.  Part of yesterday was that it was the first full day of nurse care.  No school.  Tonight my parents will be there.  I feel better knowing my parents will be there.

I'll talk to the school.  See if they have suggestions moving forward.  See what they suggest for the nurse.  The agency is already talking to me about a new BSC and TSS.  We'll see.  I'll reach out to the neurologist today and push them on prescribing the seizure med.  Plan your work and work your plan.  We'll be alright.  Dig out of the snow.  No easy answers.  No manual for this.

But...I have to do better.  Whether that's just getting more sleep?  I don't know.  It can't hurt to be less exhausted when dealing with difficult behavior.  So I'll start there. 

It'll be alright.


(This morning)

The cleaning woman comes later today.  I tidied a few things up.  It's ironic, having to clean for the cleaning woman...but here we are.  I picked up my pajamas (tshirt and shorts) and stuffed them under the pillow of my newly made bed.  I put the unfolded laundry baskets on the bed so she could mop.  I tidied the bathroom as I brushed my teeth and went downstairs.

I hurriedly threw my lunch in the lunchbox ("What's in the lunchbox" I intoned, like the game Lily had been playing...leftover pizza, if you were wondering).  I ran down to the basement and transferred the laundry to the dryer, tossing a new tidepod (don't eat the tide pods, kids) in the wash before adding the last load of dirty clothes, shutting the lid, and turning it on.

On the counter was half of my coffee.  I'd gotten so busy I hadn't finished it.  I gulped what I could...and immediately spit it all over my counter and floor as something warm and soft slid inside my mouth.  My brain immediately recoiled...slug? cockroach? 

Peanut butter.  I had forgotten about the goddamned peanut butter.  It had remained, fully formed, a mystery globule in my half-finished coffee. 

Bad pairing.  Do not recommend.