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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.