Groove

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 self-satisfy...it 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.
Click.
Grab backback
Open door, and hold hands down the driveway.
Talk to bus driver about drop off.
Wave goodbye.
Watch the bus driveway.
Breathe.

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 grown...it'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.

Jinx

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. 

So...

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.  But...it 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.  So...my 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. 

before

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.

A Touch of Lace

Lily has been growing like a proverbial weed.  She's sprung up almost overnight, finally cracking the "growth chart" she's loitered below for so many years.  Every time I take her to a doctor's appointment...and that is "many"...I note her measurements.  You know that baby book you keep for like the first 18 months of your baby's life and then forget where it is?  That's going on in my iphone right now.

See attached chart below:

I like charts.

She's gained almost 30 pounds in less than two years.  It's pretty amazing.  So much of my "autism narrative"...so much of how Leslie and I reacted to Lily's behaviors was overridden by a desire...a NEED to get her weight into a more healthy range.  Now though...game on.  The kid's killin' it at the dinner table.  Now I don't feel so...threatened by her loss of patience when she eats.  Now I don't feel like it's imperative that she get SOMETHING in her, so why bother with working on her self feeding.  Time to refocus.  Kid's got some wiggle room (no wiggle-related pun intended).

So anyway...growth spurt.  Her feet apparently also grow.  Sometimes I forget that.  My parents noticed her toes might be stretching the fabric of her current footwear and took her shoe shopping.  Mom sent me a picture.  Lily's favorites were the powder blue ones, but I liked both.  She refers to colors by their corresponding wiggle.  The powder blue were "Blue Anthony Shoes". 

Side by side comparison of blue anthony shoes and also...blue anthony shoes

It will become more complicated when she wears the red and navy blue ones.  All blue shoes are blue anthony shoes...so... pointing may be involved. 

At Lily's current shoe size...(Big kid size 1) the velcro options are dwindling.  I reached out to fellow autism parent, blossoming autism blogger, and AC of PA staff member, Jen for suggestions on clickable shoe closures.  I knew her son had them because she had initially struggled getting them on his shoes.  She pointed me to Zubits website.  I then went to Amazon and found a pair of knockoffs (Aircity) at half the price.  I bought white because I thought they'd look sharp with the shoes, but also look decent with ANY athletic shoe.  But they have tons of colors.

In a nutshell...they are powerful magnetic closures that you lace your shoelaces through then use the magnet to open and close them.  They look like this...

The magnets are STRONG, but you can get varying strengths for bigger (or smaller) people up through active adults using them for running shoes.  I Amazon Primed them and a couple days later I followed the simple directions and within a couple minutes (like seriously, Jen, what the hell was your problem?) had them on her blue anthony (not the other blue anthony, they have velcro) shoes.  I was pretty excited. 

She's been wearing the powder blue ones pretty much, but when I picked clothes out for her first day of school I thought the darker shoes would be a better contrast and not too "one note". 

Note shoes. 

Yeah...I um...didn't try them on Lily before I fully tightened the laces into the closure and snipped the ends.  I tightened them so much they wouldn't fit over her feet and then close.  I um...can't fix them because I already clipped the ends of the shoe laces so there's no flexibility to loosen the laces and start again (so...sorry Jen). 

So...today I'm shoelace shopping.  We'll try again tomorrow.

Splitting Hairs

I've reached another one of those unpleasant autism-parent decision plateaus...where I have come to a realization that something I've been pushing with Lily, something that was really important to me, was in truth, only important to me.  Not to her. 

Lily is a beautiful girl and I love her long hair.  And Lily doesn't give a shit.  And I have fought against cutting it shorter for years and years and this morning, as she clenched her teeth in frustration, biting down hard on her sweatshirt in anger and screaming through the material, I realized that it's all been because of my desire that she have long hair, and not for any other reason.

Hair styling with Lily has become increasingly harder through the years, and lately when her mood declines she lashes out more and more vehemently...spitting, biting her hair or shirt, screaming NO!  kicking off her shoes, throwing her hair clip and glasses...and hair styling rapidly puts her mood in that sort of decline.

This morning, for probably the third time this week, I loaded Lily onto the bus with a warning to the bus aide to be careful...Lily is very frustrated this morning...then watched helplessly through the window as she attempted to snatch the glasses off the face of her bus aide and hurl them across the seats.  This morning the aide dodged back quickly, looking up at me beseechingly as if I had the power to do anything other than stand witness. 

She was pissed (Lily...but maybe the aide too), and me trying to put her hair in a pony to keep it out of her face is what put her in that place.  Once she's in that place it's probably ten to fifteen minutes of solid rage before she processes and settles back into the happy little Lily she usually is.  But I put her there.  Again.

During the morning routine I cut up her poptart and placed it on the table.  She wasn't sitting down at the time and I didn't really give it a second thought.  While I talked to Emma and Lily watched TV she eventually wandered over and sat down, popping a piece of poptart in her mouth before I noticed that her hair was in her mouth too. 

I pulled the long strands of hair out of her mouth (it doesn't really bother her that she's swallowed the hair with the poptart, I grabbed a napkin to attempt to strip the poptart goo off her hair.  I gathered it up and made a messy partial pony on top her head, trying to finish quickly before she started getting upset.

I made it.  It was later though, when I tried to straighten it up, brushing it back off her face neatly and gathering it in my fist to wrap and rewrap with the pony tail holder that she spiraled down, cratering into the place where she remained as I loaded her onto the bus. 

Not for the first time I thought...I guess I need to cut her hair. 

Those kinds of decisions are the hardest ones for me.  It's stupid really, because it's an easy decision...Lily hates her hair being styled.  I need to style her hair when it's long...cut her hair shorter.  But it comes at the end of a long battle to NOT cut her hair, so it makes pulling the trigger that much harder.  But it's done.

hmmm...

I'm going to contact the family hair dresser today via text with a few pictures to consider.

My requirements for Lily's haircut:

1)  cute (obvi...)
2)  stays out of her face without a clip or a pony
3)  doesn't require "styling/curling/etc" in order to look good
4)  won't get in her mouth if she bends over her food when eating. 

I was going to post a picture of Eleven from Stranger Things as my first cute haircut example, but I couldn't find one that was obviously marked as shareable.  Look her up.  Millie Bobby Brown...she shaved her head for the show.

The sight gag isn't nearly as funny without the sight part.

Anyway...it is purely coincidence that every single cut I found (and maybe one or two are the exact same) happen to be labeled "short haircuts for asian girls".  I had no idea they were so ethnocentric.

Here they are:

This is by far my favorite

This has some sort of weird unkemptness vibe that I probably won't be able to reproduce

On Lily the back of the hair will just hang straight down

This is probably my least favorite, and I can see her getting her hair in her food

What do you all think?  Leigh?

What I Did On My Summer Vacation 2016

We just got back from vacation.  It was a good one this year.  Less sad.  Last year...mere months after Leslie passed, I found myself more or less miserable, "trying to keep things the same" for the kids in a condo that was wayyyyyy too much the same as the one we'd spent our vacation in the previous summer with Leslie still alive (since it was exactly the same room and condo).  The price was right, and so we did it.  And I'm glad we did it.  But it sucked.  That probably doesn't make a lot of sense.  

We were pushing past firsts...or I was...wanting to get PAST the first vacation without Leslie, BEYOND our first Mother's Day and Anniversary and Christmas...get it to a place where people stopped asking how we were doing with our firsts.  Get to a place where I could compartmentalize better because the people who loved me weren't constantly reminding me to think about what we'd lost.

That's not to say I don't think about it.  But it's more manageable.

We went to Hatteras this year.  I think it's officially Waves, but the names of the communities down there blur together like the days do when you're there.  Rodanthe?  No...we were further south.  Chicomacomico?  no.  Waves?  is that even a place?  Hatteras Island?  Whatever.  It's about 30 minutes south of Nags Head...which is MY favorite vacation spot for the family.  And it was very similar to that experience.

I won't get bogged down in the minutia of our day to day, but one thing I did notice...have been noticing...is Lily's issue with her swimsuit.  She hates it.  And I don't mean the suit itself.  The concept of  Swimsuit...like Plato's Justice or Good or Right...the purest essence of the word/virtue.  Capital letter Swimsuit.  Any suit that fits that mold.  SHRIEKED no.  Bit.  Pawed.  Scratched.  Screamed.  And then it would be on...and she'd start to calm down, and have a good time.

My sister bought her a couple surf shirts in a flash of inspired brilliance, and she willingly put one on, not realizing that it too was a Swimsuit.  But as soon as the swim bottom came out...all bets were off.

Maybe it's that it's such an extreme transition.  I tried to be as quiet and calm...gentle and reassuring...slow and painless...as I could be.  Made no difference.  I tried timers (usually a great tool for Lily).  No good.

If I thought that the swimsuit hurt her, I wouldn't even have bothered.  But she could barely feel it.  The bottoms slide somewhat loosely over a swimmie that she wore without complaint.  I had bought two new suits before vacation just to make sure it wouldn't be too tight (wondering if, from previous experiences, that was the problem).  And I guess it wouldn't have been the end of the world to just let her swim in a swim diaper and a surf shirt.  She'd have been fine.  That's on me ultimately.  It was our pool.  It's not like I was worried about drawing stares.  I just felt she should have a suit on...

Anyway, I guess I feel like in her mind it's just a big giant scary transition.  When THIS goes on...I get wet.  I go in the pool.  I swim.  I feel a shock of cold before my body adjusts.  I don't know.  Still looking for easier/more agreeable ways to get her into her suit because...

She loved swimming in the pool, or standing in the ocean waves, letting the surf boil around her toes, feeling the swirling sand and the soft tickle of churning foam before the wave retreated.  And she was swimming.  It was great.  With a pool noodle under her arms, she bicycled around the pool wherever she liked.  It would take a half hour or so to get her in past her ankles...then her knees...then her hips...then up to her neck...but once she was in, she never got out.

Maybe it's just scary enough, just cold enough, just weightless enough, just wet enough...that she doesn't want to do it...until she's doing it.  Time will tell I suppose.  I'll keep trying.

Emma spent more time with her cousin than me, but that was okay, she liked having the independence.  They went to the beach or the local stores, or the ocean, and she hunted for pokemon or boogie boarded, or just played in the pool.

And we did get time together, playing in the pool, shopping for friends' presents, or walking the beach with her Aunt and me.

I wouldn't exactly call it a "relaxing" vacation, but it was a fun vacation.

The Summertime Girls

Lately I'm really struggling to start posts.  So...I don't.  I have a half-written tribute to Lily's school that I started on her last week, and she's already starting ESY at her new school.

Father's Day was Sunday.  I felt sad.  Maybe a bit sorry for myself.  It seemed to me that somehow I was sadder this year than I was last, and I feel like I probably just am not remembering correctly.  Last year we were at the beach.  Summer vacation.  It was...not what it once was.  But maybe just having vacation stuff to do pushed Father's Day stuff onto the back-burner and made that observance seem less sad than it might have.

It ends up being a weird circular celebration where my parents take Emma out to shop for me, and I give them a budget for Emma to buy a present to give me and then I pay them back.  It seems sort of sad.  It's ultimately no different from a balance sheet perspective.  When Leslie would take charge of Father's Day the debit came from the exact same account as this one did.  But she knew how to make it seem like a special occasion for me.  And too much of that now falls to Emma, who is as scattered and unfocused about those sorts of things as you might expect your average 14 year old girl might be.

So I was feeling a bit sorry for myself but we went to my parent's house and had a cookout and a good time and ultimately it was a very nice Father's Day, I just think I was moody and more fragile than I typically like to think myself.  We left that night and I got a great photo of the kids and I on my phone (Emma is a bit out of focus and looking slightly off 'camera' but it's probably one of the best pictures of the three of us ever)...but forgot to get one with MY dad.  Or my father-in-law.  I can be just as scattered as Emma, apparently.  Or perhaps we just know where she got it.

the best picture ever taken of the three of us.

ESY started for Lily on Monday.  ESY is "Extended School Year".  It's a school thing to help Lily keep some of the skills she picked up from last school year so that she doesn't regress over the long vacation.  Anyway, she has to ride a bus all the way to her new school, and I was a little edgy about the whole thing.  I got up a little extra early on Monday and had all her clothes laid out and supplements ready, and just tried to be extra organized so that the stress of this "first" wouldn't create problems.

Part of the stress of ESY is getting Lily on board, but she was fine getting on the bus (which arrived 20 minutes late.  I tried...so hard...not to call the bus company.  But I did.) and had what appeared to be a great first day.  Lily's teacher called me on my cell and just sort of gave me the verbal version of what she'd written in Lily's communication log.  Sounds like it went just about as well as I could have hoped.

Today before the bus arrived Lily said, "I can go to camp today?" and happy tears collected in the corners of my eyes as I furiously scribbled this into the communication log to send back to ESY this morning.

This kind of thing is exactly what Leslie would have stressed out about so much.  And I would compartmentalize it because, let's face it, Leslie had it covered, and I probably was not so understanding about how much stress she was under.  And now that stress falls to me and I can sort of get into my wife's head, absorbing that worry until it swells and I can physically feel the stress fill my chest like a helium balloon.  And then I remember to write lists...and it helps:

'call bus company

pack sun screen

pack lunch

arrange pickup'

So immediately after hearing about Lily's first day, I wanted to call Leslie and tell her.  Reassure her.  Lily's going to be okay.  Lily did great.  And so that was yet another happy/sad.  

Meanwhile Emma's summer is sort of just...going on.  In the background my teenager is experiencing her first "real" summer; the kind of summer I had when I was a kid.  She can stay at home by herself, go to the pool with friends, walk to her friend's house to hang out, go to movies...this is her first real taste of "freedom".  And although it feels like she's sort of the 'forgotten' kid in terms of making arrangements or whatever, it only feels that way to me.  To her I think the world is her oyster.  She is eager to be left alone.  Given space.  Allowed options. 

She started her volunteer work at Glade Run yesterday.  It's hard work and her feet were tired from pulling horses by lead ropes through the thick new sand of the coral.  She's not working full time this year the way she did last year.  I think it's more manageable this way, and more fun.

the best picture ever taken of a family member (glade run from last year)

This morning the bus was on time, and Lily was eager to go to "camp" and I noticed that instead of a seat by herself, or with a monitor...they put her next to "Lilly with two Els", who introduced herself to me as I was getting Lily up the steps of her bus yesterday.  She's a pretty, older girl, probably in her teens, and I don't think I knew how important it was for me to see Lily with other kids, because I almost started to cry.  I've never had an issue with Lily not really expressing any desire for social contact.  She's content solo, or seems to be, and I can honestly say that has given me no qualms.  But today when she was sitting down next to Lilly with two Els I got that heart swelling (non-medical) feeling and just felt really happy for her.  

And...honestly...If Lily is pissed she'll probably swat the girl next to her and they'll move her or whatever, but I'm going to preserve that image in my head and heart until I hear otherwise.  It was just very sweet.  

Nice way to start my day.

No Matter What

I was drying Lily’s hair after her bath. The drying of Lily’s hair takes place on my bed in my bedroom. She rests in the basket of my legs and watches the Wiggles while I dry and groom her hair, drawing out thick locks of hair like wet silk and brushing it smooth as it dries. She doesn’t love it, but at least doesn’t fight it.

When we finished I threw back the covers that I’d gathered around her to help hold her in place and she spun to face me, careless of the placement of her knees, her not inconsiderable weight plopping down inconveniently as I dodged and adjusted my position.

She stared back past me, up and to my left and I followed her gaze back to the wedding portrait that hangs over my bed. Leslie and I standing in our wedding day attire next to a reflecting pool. It’s not something she typically does.

“Whatcha lookin’ at, Lil?” She didn’t answer. I wanted her to say mommy; needed her to say it. I wanted to know she remembered. I mean, I know she does, but sometimes I just need to hear it.

“Who is that in the picture, Lil?”

“Daddy!” she answered.

“And who else?”

“Lily!”

“No…Lily’s not in that picture. Who else is in that picture?”

“Mommy,” she said, and then she was silent for a moment before adding, “No matter what.”

The words Leslie said to her every night at bed time; the words I now say to her after her prayers. “I love you, no matter what.”

“Yes,” I said to her, blinking back tears, “Mommy loves you no matter what.”

She remembers. Of course she remembers.

It’ll be a year this coming Thursday.

We all live on borrowed time. Ashes to ashes, dust to dust, all that stuff. Bodies are temporary. People pass away. But a mother's love endures; a mother’s love is forever.

No matter what.

What is Lily Feeling?

It was a busy week this week preparing for Mother's Day (and Leslie's birthday the following day).  And yeah, obviously it's weird, because Leslie is gone, but Mother's Day still goes on without her because we celebrate MY mother's mother's day and Leslie's mother's mothers day and my sister's mother's day.  So...

We were always blessed, Leslie and I, with a very supportive family that more or less got along.  That allowed us to do things like... go to one house at Thanksgiving (and other holidays) instead of two.  Mother's Days we try to have at my mom's house.  This year everyone graciously let us host it.  I think in my mind it was just going to be MORE sad being away from Leslie's home celebrating all the living mothers.  I felt like catering to my kids and everyone else was kind enough to let me. 

Lily and Emma both did great.  ARE doing great.  There were some sad moments, but like I've said, the sad moments make us at least feel like we're doing it "right".  It's weird.

We bought flowers and plants and planted them because that's what Leslie enjoyed doing on Mother's Day.  And Leslie's little sister came out from Chicago and made red velvet cupcakes with Emma from Leslie's tried-and-true, ingredient-stained, wrinkled, pencil-marked recipe.  That's what Leslie would have made, I have no doubt.  And they were exactly perfect.  And Lauren made "Leslie's" sangria...which was also what Leslie would have done, but I say "Leslie's" in quotes because when she was first learning to make it, it was Lauren she got the recipe from.  So obviously that turned out exactly the way Leslie's would have...since it was Lauren's in the first place. 

It, honestly, was a pretty normal Mother's Day...but my kids' mom wasn't there. So obviously there were some sad moments.

On Lily...

I was at Lily's IEP meeting on Friday.  They go pretty smoothly now.  I don't feel like anyone is trying to pull a fast one.  Everyone seems to genuinely care about Lily and want the best for her, so more or less we just go over the goals and tweak things and then it turns into a bullshit session.  Leslie used to brag about the IEP's where she went an entire meeting without bursting into tears.  I think I might have cried at this one. 


A couple sidebar things...I haven't written about it yet because I'm struggling with it myself, but Lily hasn't mentioned her mother unprompted at home since she passed.  Not once.  She hasn't asked where she is, she hasn't said anything.  And so I don't know if this is her grieving...or because of the amount of time Leslie was apart from the family, isolated in the upstairs bedroom by the obstacle of the stairs, she just is used to not seeing mommy anymore. 



When we went to Lily's semi-annual re-eval (a couple weeks ago) the psychologist asked me about Lily's grieving and I confessed that I couldn't tell if she even noticed.  He's doing a Functional Behavioral Assessment and comparing it to the last one done to see if there's a change that might be attributable to the loss so we can decide how/if to address it.  I mean, on the one hand it's so sad that she might not even really be aware...and on the other hand...man wouldn't it be nice to not be so sad about it.  And I'm damn well not going to counsel her INTO feeling extreme sorrow.

Last night I was looking at some beautiful pictures of Leslie that friends had posted on facebook and there was one of Leslie, her hair was long and wavy.  It got that way if she didn't straighten it, but she usually did because she knew it was my favorite.  She must have been pissed at me that day.  Anyway, you looked gorgeous.  I scrolled to the picture of Leslie on my phone and held it up to Lily and asked her who it was and she said "Lauren" (Leslie's younger sister) and I was just so sad.  I'm trying not to read too much into it.  And honestly, Lauren visited for the weekend, Lily wasn't even alive when the picture was taken, so Leslie looks much younger...I don't know...maybe it DOES look more like Lauren does now than the mother she grew up knowing.

This is the picture.  Lauren and Leslie do look a lot alike.  But it was still
kind of heartbreaking given the circumstances.  (I don't really have permission
to post this, but I'm facebook friends with all these guys, so I'm sure they'll tell me
if they're pissed I posted it.)

Meanwhile, at school, Lily WAS mentioning her mother.  A week before the IEP, one of Lily's teachers reached out to me.  She wanted to give me a heads-up about something that Lily had said at school.  She had read the blog post about Lily saying her final goodbye to her mother (last week's "One to make you cry") and wanted to share that after class one day Lily was walking out the door and said, "She didn't say anything."


The instructor had asked, "Lily, who didn't say anything?"

"Mommy didn't say anything."

"Lily, what did you want mommy to say?"

"Mommy didn't say goodbye."

And she said that she and the aides struggled to find the right words to say to Lily and felt bad that they hadn't been able to help more.  (They talked to her, they offered their own goodbyes to Lily.  They offered their own good byes to Leslie, etc) .  And reading the email through tears, had I been there at the time in the heat of the moment I doubt I could've offered them anything better. 

But I thought about it.  And that night after our nightly ritual, after closing the book and replacing it on the shelf, after turning on her fan and her night light and turning off the big overhead light and closing the door, tucker her in, and lying close to her in the dark, we said prayers together.  Prayers are almost always prompted, and that night was no different. 


"Dear..."

"God!" 

"Good, Lily.  Bless...."

"Mommy"

"and..."

"Daddy"

"and..."

"Emma"

"and..."

"Lily!"

"A-..."

"MEN!"


After her prayers I told her that we ("we" love her, versus "I" love her) loved her and that we were proud of her and that we believed in her just as I always have, and then I tried to talk to her about mommy.  And I don't know what she knows or doesn't know or feels or doesn't feel, but I asked her about mommy saying goodbye.  And I asked her if it made her sad.  And she didn't really respond appropriately, meaning, I asked about mommy not saying goodbye and she didn't really reply at all.   And after giving her a little extra time to process, and trying to ask again, I just assumed it DID make her sad and told her this:

"Lily, when mommy was sick, she needed to go someplace to make her feel better.  And the only place she could go to feel better was heaven.  And heaven is great because mommy will never be sick ever again.  She'll always feel really good and happy.  But when you live in heaven you have to stay there, so people you love can't see you.  But you leave your love behind in the hearts of the people who love YOU.  So mommy is always with you, baby.  Mommy's love will never leave you, and that's why she didn't say goodbye.  She's still here.  In your heart."

I put quotes on this like I have a fucking photographic memory of what I said, which I don't...but that was the gist of it.  The people we love who go to heaven don't have to say goodbye because their love never leaves, it stays in our hearts.  And then I reiterated what I told her on "the day we told our kids their mother was dying" which is a blog post for a day when I have more time and fewer people to see me break down into tears...the idea that she could always see mommy, could always talk to mommy, that all she had to do was close her eyes and think of how much she loved her, and she'd see a picture in her mind and could talk to her.  And I stroked her hair and she fell asleep.

This is such a stab in the dark for me because really it's so hard to tell how much of what I'm saying she gets and doesn't get, so I presume competence and try to make the message half as wordy as I might make the same message to Emma, and hope I'm helping.


Back at the IEP meeting, we were wrapping up our bullshit session and Lily's teacher asked me what it was that I'd told Lily about where Leslie was, and she asked me and I sort of nodded my head and she told me this:

"We asked Lily where mommy was, and she said, 'she's in my heart.'"

I nodded my head and gritted my teeth.  My turn to cry at IEP's, Les.

One to Make You Cry

"I like the ones where you make me cry."

Leslie always told me that the blog posts I wrote that made her cry were her favorites.  But Leslie liked a good cry now and again.  Maybe most women do.  "Terms of Endearment", "Steel Magnolias", "Fried Green Tomatoes"...there's a reason why those movies get watched, though I'll never know because I refuse to watch them.  In general I always told Leslie that sad blogs are harder to write because when I write them, I relive what I'm writing...and when I relive something sad or stressful or angry...I get sad and stressed out and pissed off accordingly. 

But Leslie loved those posts, and despite the fact that I typically write upbeat, cheerful, or amusing takes on even the sad stuff, occasionally I slip a tear jerker in there.  And those would always be my wife's favorites. 

So this one's for you, baby...one to make you cry...your favorite kind.

-----------------

We learned that Leslie was dying about a week before she passed.  The physician's assistant took me out into the hall as Leslie labored for breath in the room and said, "Has anyone ever talked to you about how to plan for your wife's passing?"  And I confessed that nobody had, and she told me the doctor had insisted nobody bring it up to Leslie or her family.  That little tidbit is sitting in my back pocket.  I need to really process what it means.  I remember Googling, "Doctor's legal obligation to provide news to family in terminal cases" and found nothing to suggest that the doctor's approach was anything other than a hotly contested talking point among health care professionals. 

Part of me believes that this approach is exactly what Leslie wanted.  She wanted the hope.  She wanted to believe that there was a fight to win, not to be told to give up...that hope was lost.

But they talked to me.  And knowing is exactly what I needed.  It helped me prepare...myself...my family.  Some part of me had known for months.  Some part of me had been secretly mourning her "metastatic" diagnosis since the day I'd researched it.  But that part of me had kept my fears from Leslie too.  How could I blame the doctor for doing the same?

Still...back pocket.

This post could be so big and so long, so I'm going to try to steer clear of how we talked to Emma.  I'm going to try to steer clear of the final few days frenetic fight to reclaim lost ground.  Let's just fast forward to Leslie's final few days among us.  I'll cover our talk with Emma at another time.  It's important for me to tell THIS story now, "urgent" you could say.

But before we fast forward to Leslie's last days, I want to tell you about Lily's holy communion.  One of the many things Leslie advocated for on behalf of Lily was that she receive her first holy communion with the other kids her age.  To that end she worked with the school and our wrap service to incorporate lessons and activities that furthered Lily's understanding of God and communion and the Catholic church.  The master plan was to have her prepared for a private ceremony (if not inclusion with the rest of her typically developing peers) by May 2nd, when the other 9 year-olds would receive their first holy communions.

When the staff approached me I asked them what the time-frame was.  They agreed that "best case scenario" the clot (this is the first you're hearing about the clot, isn't it?  They found a clot that was making it still harder for Leslie to breathe) would respond quickly to medication, Leslie's breathing would improve, and she could have several months.  "Worst case scenario, she could go at any time."

I was floored.  Any time?  I'd been watching Leslie's ragged breathing for weeks.  The staff at the hospital was telling me that this sort of breathing was the beginning of the end.  They asked if they should tell Leslie.  I knew Leslie was still hoping to have chemo Wednesday of the following week.  I knew she was still fighting; she was still clinging to hope.  I also knew she wouldn't want to know.  I told them to approach it with her very generally.

"What are your wishes if the clot doesn't respond to treatment?" ...that sort of thing.  Feel her out.  See if some part of her wanted to know.  And IF she did, to start the dialogue.  They did.  She did.

Leslie texted me, "They've talked a bit with me.  I know...do you think it's best to have Lily here?"  I replied no and that I'd be there in twenty minutes.  I told her that my parents knew, that I'd had to tell them in order for them to understand why they might be needed more even that we'd already been leaning on them.

And then we talked and we cried and I learned that although Leslie knew...she didn't know how long.  And she asked me if I knew.  And I said I did.  And I asked her if she wanted to know and she looked at me and said so hopefully, "I just want to see Emma get married," and I looked at her and my eyes filled with tears and I shook my head no, and she broke down then.

"Then I want to see her graduate," and I couldn't crush her hopes again though I'd already lost mine.

I started making plans to push up Lily's first holy communion only after we entered hospice-in-home care that Saturday night.  I told Leslie we were going to bump the communion up to Tuesday.  Leslie was upset about it, but was having trouble explaining why.  Her breathing was so ragged she would gasp for breath after each word, and her writing was illegible.  We finally realized her issue was that she was afraid her mother was going to be upset that I had a friend of hers shopping for communion dresses.  She had forgotten that her mother had already agreed it was okay.

After two of the most desperate, stressful, and emotional nights of my life, I was forced to concede that I couldn't care for Leslie the way she needed.  She was transported to hospice on Monday morning.  Almost immediately she was more comfortable.  People started to visit.  Leslie's friend Jen brought Lily's communion dress choices into the room.  Leslie and her mother and Emma and I helped to pick the one we liked best.  The plan was on for 4:00 the following day.  We'd at least get this communion done.  At least THIS.

It was a great day.  So many friends came to visit.  We Skyped some friends in Canada.  Lily visited with Emma and when they left, I prompted Lily to say good bye to her mother, and Lily instead said, "I love you mommy," so clearly that Leslie's already labored breathing caught in her throat and she began to cry.  And then the girls were gone, and the friends filed out, and Leslie, whose eyelids were drooping and who was startling herself awake repeatedly at last fell asleep at our (her sister and I) urging.  I kissed her goodnight and goodbye and went home to be with the girls.  Her younger sister and her husband spent the night in the room with her. 

At the end, Leslie didn't want her picture taken.  She'd lost 50 pounds, she hated seeing herself.
This is probably the last picture taken of Leslie while she lived.  Emma, holding her hand, and taking
a picture of her hand...because taking a picture of her hand was allowed.

The following day when I arrived at the hospice, I found that Leslie had deteriorated to the extent that I frantically called the priest and begged him to move the communion up to 1:00.  It was the earliest he could make it.  He would be just finishing with a funeral then.  I texted Lily's teacher, who was going to get her changed into her communion dress and bring her to the hospice, "I think we need to make communion happen at 1:00.  Our girl is fading.  Can you still bring her?"  She agreed.

Leslie never woke up.  We gathered around her as we waited for Lily and the priest and her older sister, who was flying in from Mississippi, milling in and out of her room impatiently, giving Emma a break to do a puzzle in the great room.  The nurse came into the great room, "I think you should come back to the room right now."  We ran.

We sat on her bed with her and held her hand and told her how much we loved her and how much she meant to us and how unfair it all was and how much we'd miss her, but that we would be okay.  That she could let go if she needed to.  We told her that she was a fighter...no, a warrior...to have fought so bravely for so long.  And Emma held her hand and I held another, and we smoothed the hair back from her face and kissed her forehead breathing desperately, "I love you so much" into her ears, praying that she could hear us, while her breathing came in quick shallow lurches.  And then...she passed.  She was there and then she was not, and at first I wasn't certain...I felt for her pulse and there was nothing there and I kissed her and told her again how much I loved her and said goodbye and told Emma to do the same.  And then I told Emma that her mommy was gone.

And we all said our goodbyes, and the nurse came into the room, checking Leslie's pulse and pronouncing her dead at...10:43?  10:48?  Sometime around then.  I wanted to say the exact time for posterity, but I can't remember now and it seems so...unimportant.  Except that it wasn't 1:00.  And I told the nurse, "We need to move everyone into the great room instead."  She nodded easy agreement

We stayed with Leslie and talked to her as if she was still there and not just an empty shell.  If she couldn't make the communion physically, then she'd make it in spirit; the best seat in the house, we decided, looking down from above instead of in bed behind partially closed eyes.  And the priest arrived and prayed over Leslie and opened a book and read passages from it.  I remember feeling comforted by them.  Someone at least knew what to do.  Knew the words to say.  And then Leslie's older sister arrived.  She never had a chance to say goodbye but she sat with Leslie just as we had.

When Lily got there...dressed in white like the wedding day Leslie would never see, I took her to her mother.  And she pulled back a little, but I prompted her to say she loved her...and she said, "I love you mommy" and I prompted her to say goodbye and she said, "goodbye mommy" and then she walked from the room into the great room where people had started to gather, seated in various chairs and on couches, and the priest began the mass for Lily's communion.

And we got to the part in the Mass where the priest says "peace be with you" and we all turned to each other and shared the peace, and we all kissed and hugged and whispered "peace be with you" and "I love you" to our friends and family and Emma said, "I'll be right back, daddy."

I must have looked confused, but I was so adrift I just nodded and she hurried away.  A minute later she returned and I know I looked confused because I remember that part as I half smiled at her and said, "Where'd you go?"

And Emma looked up at me and said, "I went to share the peace with mommy." And I hugged her, barely holding myself together then in the face of her maturity and strength, the tears streaming from my face.  I hugged her so tightly and said fiercely, "You're such a good girl, Emma.  I love you so much."  And I thought to myself, "This girl is going to be okay."

And this is where I stop and take a long, ragged breath.  I'm sorry to everyone I didn't invite to Lily's first holy communion.  I'm not Catholic.  I didn't even know what I was supposed to do.  This was a big deal for Lily.  A big day.  And she looked beautiful, and she was soooo good.  And she ate the wafer and almost drank the wine.  And the priest was so kind and supportive and genuine.  It should have been such a day of celebration.  But my wife had died, her mother, Emma's mother...and so after the communion I took the pictures that everyone took of Lily in her communion dress and I stored them away.  One thing at a time I told myself.  And that one thing at that one time was the death of my wife, and everything that I needed to do following that.  And please, this isn't something I need forgiveness for, or to be told not to worry about it or whatever.  I just feel it and so I'm saying it.  I'm fine.  But I'm still sorry.  Sorry for the things that I could control, and sorrier for those I couldn't.

We took pictures in the great room with Lily in her dress as they made arrangements for Leslie in her room.  They took Lily away down the hall.  Emma said goodbye again to Leslie and went with Lily.  And we cleaned out Leslie's room and I turned off the music that was playing on the radio.  What had become her favorite station, a christian station. 

my dad escorting Emma and Lily

I asked if I should take off Leslie's wedding ring and things or if the funeral home people would handle it and the nurse told me that it was up to me, that it was safe in their hands.  "Do you want to take it now," she asked.

I shook my head and paused, not trusting myself to speak at first, "When I put it on her finger, I meant it to stay there," I said, my voice cracking, crying again.

"It's okay," she said supportively, "She's in good hands.  They can take care of it for you if that's what you want."  I nodded gratefully to her.

I said my final goodbye to Leslie.  I talked to her for a little bit.  I told her our story wasn't supposed to end this way.  I told her she didn't deserve the ending she got.  I told her I loved her.  I told her I would take care of our children.  And then I said goodbye for the last time even though I felt like there was a cable tied from my heart to hers right in that room, keeping me there, stuck fast and immobile.  I turned my back and walked out because I knew I could just as easily see myself curling in a ball at her feet and staying all night but I had things I needed to do.  And little people who needed me with them.

Okay...this concludes the sad...at least for now.  I hope it was your favorite, Leslie, I always knew that if it made me cry to write it, it would make you bawl.  And I cried.  Even the editing made me cry.  "I like the ones where you make me cry."  This one's for you then.

The reason I felt like I had to tell this story now...though all the happy memory stories have really been such a balm to my grief, is that this weekend, Sunday, Lily's communion class will officially go through their first holy communions.  And proud parents will post their children's pictures on facebook and elsewhere with captions like "So proud of our big girl" and "Happy First Holy Communion, Baby!"  And I wanted to post Lily's Facebook pictures from her communion around the same time so that friends and family could celebrate her communion now too and tell her how proud we are of her and that we don't have to focus so much on her mother's death, at least not right now.  Right now is for her. 

She was amazing.  She sat so still and quietly and looked so beautiful.  And she was so attentive to Father John.  Thank you everyone who helped make it happen, and on such short notice.  It's only been three weeks since you lost your mother, Lily, and it still feels too soon, but not congratulating you now would make it too late, and you deserve a chance to enjoy your accomplishment.  This big step was made possible by lots of people who love you working to put you in a place to enjoy success.  But it was also made possible by you.  I love you Lily.  Happy First Holy Communion.  So proud of our big girl!

getting one of Lily's famous open mouthed smooches

veil plus Lily plus open flame...

pretend it's a mcnugget

love this picture

Love this picture more though...