Follow by Email

Tuesday, December 6, 2016

Morning Ritual

I finish getting dressed and go to collect Lily.  The monitor told me she woke up about the same time I did this morning, a blessing, frankly, since it's been 4:00 a.m. for the past three or four weeks.   Emma's light halos her closed bedroom door and I say, "Good morning, Em," waiting for her answer before pushing open Lily's door.  When I enter her room she is sitting up in her bed waiting for me pleasantly.  I fold down the bed rail and she swings her legs over the side, holding my hand as we walk down the stairs. We walk carefully.  Her socks are slick on the hardwood steps and there have been many near-falls.

I help her into the bathroom and she sits as I start switching lights on.  Bathroom light, office Christmas tree, family room, kitchen, family room christmas tree. 

Every morning I feel like I forget a hundred little things.  This morning I see laundry baskets filled with folded clothes as I enter the family room.  My dad had folded the laundry in the baskets.  I chose not to put them away last night, tired from homework and housework and...workwork.  I forgot that choice until this morning.  This reminds me of the laundry needing to be transferred from the washing machine into the dryer, and the dry clothes waiting to be basketed.

"I'll be right back," I call to Lily, and I walk downstairs to my basement laundry room to pile the clean dry clothes into an empty basket from the dryer.  Then I transfer wet clothes from the washer into it.  Some days I rewash these because I forget they're there for a day or more, but today I judge that they hadn't sat long enough to need it.  I walk back upstairs and deposit the basket of clean clothes on the couch next to the baskets of folded clothes. 

The cat twines himself between my legs and meows softly, reminding me he needs to be fed.  I'll wait for Emma to do that. 

Lily gets up from the toilet and I hustle in to help her get dressed.  She finds the ipad and busies herself with YouTube videos of the Wiggles performing a skit about a princess who falls asleep for a hundred years.

Also forgotten were some dishes I left in the sink.  I start Emma's breakfast then begin rinsing plates to put in the dishwasher as Emma hurries through the room headed down into the basement. 


"What are you doing, Em?" I holler down to her.
"Looking for my clothes!" she replies.
"Did you try the couch first?" I ask her ironically, "I'd hate to see you waste a trip into the basement." 

There is silence for a moment, then, "Yeah, thanks," as I hear her climbing the stairs again.  She briefly rummages through the clothes in one of the baskets before grabbing joggers and a sweatshirt and heading back to her room.

 Something smells like it's burning, and I hurry to check the poptart in the toaster oven.  It seems fine, but I remove it anyway and put it on a plate.  The day before yesterday I forgot that Lily's lunch bag was sitting on top of the toaster oven and smelled it melting before I rescued it...mostly.

Lily is placing her ipad on top of the napkin rack at the kitchen table now.  Each time she places it atop the napkins it is slightly off to her eye.  And she picks it up and places it down again over and over.  Most of the time I can put this out of my mind and focus on what I'm doing.  This morning, though, she's knocked the napkins out of the rack and as she continues to try to place the iPad atop the rack she's scattering the napkins further and further across the table, widening her mess, increasing the entropy in the room.

I tell her to go into the family room and sit down with her iPad, something I'm not spectacular about being consistent with.  She obeys as I clean up the napkins, stacking and tidying them until they're in a neat pile, placing them into the napkin rack.  Lily is back now though, and immediately resumes her placing and replacing, hovering with her face a foot from the screen.  A periodic stream of questions that must be answered cycle from her lips.  I answer these automatically, without thought, sometimes incorrectly.  It doesn't seem to matter, this correctness.  If I'm wrong, she'll let me know.  If I'm right, she'll move to the next question.

"What is Lachey wearing?"
"Purple, like a snurple" (I add the snurple because it makes her laugh.  Now it belongs to the script)
"What color is Emma wearing?"
"Yellow," I reply.
"Like a marshmallow," she continues.  This is somewhat new and surprises me.
"Yeah, baby, that's a good one!  Yellow like a marshmallow."
And so on.

I send her back to the family room, telling her it's because she made a mess of the napkins.  She ignores this but goes and sits down anyway. 

I return to the fridge and get out the milk and cream.  I had forgotten to set the coffee maker to automatically brew, but blessedly did NOT forget to get it ready.  I mentally rejoice that I wasn't too lazy to do this and add one more thing to my growing list of "stuff to do before leaving for work".  I push the button to the coffee machine and the grinder begins to growl as it prepares the beans, scaring the cat, who has returned to rub against my legs, between and around them in a figure eight.

"Your mommy will feed you," I tell him, nudging him gently out of my way with my foot as I get my coffee mug and Emma's glass out of the cabinet.  I pour then set the drinks at the table when they're done and get out our vitamins.

Emma is back downstairs from getting dressed.  She sits.  Lily is back at the table. 

"How'd you sleep, baby?" I ask Emma.
"What's Lachey doing?" Lily asks
"Fine thanks," Emma responds, "How'd you sleep"
"He's waking up the princess," I say to to Lily, "I slept fine," I tell Emma.
"No he's holding her hand," Lily replies.
"Good," Emma replies.

Lily hovers a bit too close to Emma's chocolate milk and I pick it up and place it closer to my side of the table.

"Daddy," Lily says.
"What, baby?" I reply.  But she doesn't answer.
"Daddy," she repeats.
"What, Lily?"  Again no answer
"Daddy," Lily again says, this time drawing the a sound out...daaaaaaaaaddy.
"Ugh...WHAT, Lily?" my answer is loud, my tone irritated.  This doesn't appear to have any negative impact on Lily who simply replies, "What's the prince doing?"
I sigh heavily and respond without looking, "He's kissing the princess, honey"
"No, he's waking her up."
"Em, did you feed your cat?" I ask
"No."
"Go feed your cat."
"Is Lachey a prince?" Lily asks.
"I'm eating," Emma replies.
"Yes, Lily, Lachey is a prince," I tell Lily. "Go feed him," I tell Emma.

She gets up from the table with a dramatic (but not particularly irritated) sounding sigh and feeds her cat before returning to the table.

More of the same.  We finish our breakfasts.  Emma mounts the stairs to finish getting ready.  She has Keystone Exams this morning and wants to get there early.  She doesn't know what room she's being tested in.  We worked on her math homework and Keystone review from 9:30 until close to 11:00.  Boxplots and slope, y-intercepts.  I was exhausted when we were done.  I'm sure she was too. 

I ask Lily whether she would like a poptart too, and she says yes.  I cut it with a pizza cutter into 16 easily-chewable bites, learning long ago that she will hold larger pieces in her hands and squeeze them.  Perhaps she gets some sort of pleasant sensory feedback from the act.  Perhaps she's unaware of how easily poptarts are rendered into goo, or how hard that goo is to clean off of fingers, and tables and chairs and clothing.  Regardless, this works.  I prop the ipad against the napkin holder at an angle and help her restart the video.  She begins to eat independently as I finish the dishes in the sink.

Her plate is clean as I load the rinsed dishes into the dishwasher and eventually wanders back into the family room, grows tired of her ipad, and asks for TV.  I join her and cycle through the old familiar options. 

"Apple store" she requests.

I arrow over the options on the youtube apple tv screen, finding what I know to be "Apple Store".  It is a video of the Wiggles performing live at the Apple Store in Sydney.  I sigh in relief.  This particular performance is 20 minutes long, so Lily doesn't require my help to restart it over and over and over again the way she does with the Wiggle princess live performances, some of which only last 3 minutes. 

"What's Lachey wearing?" she asks.
"Purple like a snurple," I reply and she giggles.
"Where's Lachey, daddy?" she asks.
"Right there, baby," I say, pointing to the screen.

 I get her supplements ready.  Her developmental pediatrician has me giving her EFA powder, zinc, magnesium, folic acid, probiotics and Vitamin D.  In the five (six?  seven?) years I've been giving them to her I've never noticed any positive (or negative for that matter) impact from giving them to her or from forgetting to give them to her.  I do it because it can't hurt.  I do it because he says it helps a statistically significant percent of children with an autism diagnosis.  How long do I keep this up? 

I mix the zinc into her 'red drink', pulling it into a syringe from the bottle cap, then pulling in her drink to mix it in.  I hold the tip of the dosing syringe to her lips and she closes her mouth.  I push the plunger in.  I mix the magnesium in a shot glass, dumping a measured 1/2 teaspoon into maybe a half teaspoon of red drink, mixing it with the tip of the dosing syringe before pulling it in and repeating the process.  The wafer, vitamin D and folic acid are chewable.  I give them to her one after the other and she chews them up. 

The EFA powder goes in her yogurt.  I'll do that in a minute, but run upstairs first to get her clothes.  She's asked for "green" clothes, but she doesn't have any green clothes suitable for how cold it is today so I get her a red sweater, a white cami, a pair of white socks and blue jeggins and run back downstairs. 

"I don't like that white dress," she says pointing to the cami.  It must not feel good when she wears it.  I'm not sure.  Or maybe it's just how she has to push her arms through it. 

She's starting to grow, and I don't feel comfortable sending her to school without it, so I simply tell her, "I know, baby, but you have to," fending off her arms as she tries to push it away before finally surrendering and allowing it over her head. 

"Sit please," I tell her, and she sits on the couch while I pull her pajama bottoms off.
"Foot," I say.  She holds out her right foot and I put one leg of her jeggins on her.
"Foot" I say again and she holds out her left.
"Stand up please" I say, and she stands.  I pull the jeggins up.
"Sit down please" I say and she sits.
"Foot" I say again, this time for her sock.
"Foot" I say again to complete the ritual.

I glance at the clock.  The bus will be at our house in 5 minutes.  Still plenty of time to get her on the potty, and get shoes and coat on and...I remember I forgot to pack her lunch but breathe a huge sigh of relief when I see my parents have packed me one, as they (and my in-laws) always do when they get her off the bus for me at the end of each school day.  I open it and see that it's missing water.  Way easier than packing the lunch.  I fill a sippy cup with water, push it into the lunch bag, zip it closed and place it in the backpack. 

"Time to go potty!" I say as I walk the backpack to the front door.

This time she willingly comes with me to the bathroom.  It is her last potty break for at least the 40 minutes it will take to get her to school.  I hear her go.  When she stands I clean her up, help her get dressed, brush her teeth, wipe her face off, then hold her hand and walk with her into the family room to get her shoes on her. 

"Where's Lachey?" she asks me, and this time I glance up to see that Lachey is off-camera. 
I point and say, "Just off camera, baby...there he is" as the camera zooms out to show all four Wiggles on stage.

I grab her coat from the hook and I wrap it around her as she insinuates herself into it.  I zip it up just under her chin, brushing the stray hairs from the front of her face so they won't get caught in it as I do.  I switch off the television and the christmas tree. 

"I want to watch Lachey," she says. 
"After school we can watch him again," I reply, as always.

We walk to the front door to wait for the bus. It's not long, but the bus is late.  I get her on and tell her I love her.  I tell her to be good and have fun.  The bus driver grabs the backpack from me, smiling and telling me to have a good day and the aid helps her to her seat and buckles her in.  She looks out the window at me and I smile at her and wave.  She is saying something.  Possibly wondering what color Lachey is wearing, or whether the princess is asleep, maybe saying goodbye.  Probably not though.  She looks away and I watch the bus drive just around the curve of the cul-de-sac before turning away to head back inside. 

I forgot to give her the EFA powder.  It'll be fine.  It'll keep. 

I go up to my room and make my bed.  I open the blinds to the bedroom and let the light spill in.  I brush my teeth. 

I walk to Lily's room.  The bed is unmade.  On a chair across the room is a stack of clothes that a friend of Emma's gave to Lily.  I need to organize Lily's drawers.  They are already full.  Some of the clothes are too small, but I haven't made time to clean it.  Until I organize the drawers I can't put away the clothes on the chair.  I'm disgusted with myself not for first time.  Not for the twenty first.  They've been on the chair over a month.  It'll be fine. 

I make the bed.  Lily's TSS will be here tonight.  Sometimes that's the only reason the bed gets made.  Because I need people to see that I'm taking care of the kids.  I know I am.  I'm doing pretty well, I think, but I'm aware of appearances.

I go back downstairs to get my coat and get ready to go to work.  I look around the room and see again the baskets of laundry.  Multiplied now that I added the load this morning.  I'm running late.  I curse under my breath.  I think about who is coming to pick up Lily.  It's my dad.  Sometimes the only thing that gets me to put away the laundry is knowing that it's still sitting in the same place it was when my parents or in-laws left the house.  I gather one stack of Lily's folded clothes and run upstairs to put them away in her drawers.  It'll keep.  It'll be fine.  I'll do it tonight. 

I look around the family room and the stairwell and the office and the kitchen.  Christmas decorations are stacked in piles.  I haven't gotten them up yet.  It'll be fine.  It'll keep.  I'll do it tonight. 

I'm aware of how it looks.  The clothes on the chair.  The baskets on the couch.  The decorations on the floor.  The plant in the dining room dead from lack of water.  The box of tshirts in my office from the charity walk in May.  I'm aware.  It'll keep.  I'll do it tonight.

Tonight is enchiladas.  When I get home at 6:30 I'll grill the chicken and preheat the oven.  If I work quickly I'll have it done by 7:00 and we'll finish eating at 7:30.  It's bath night for Lily, so I'll probably pile the dishes into the sink and just run water so that I can give her the bath, dry her hair and put her to bed on time before I help Emma with homework.  And tomorrow morning...well...forgotten dishes and laundry.  It'll be fine.  It'll keep.




Thursday, November 17, 2016

Night

Emma is reading "Night" by Elie Wiesel in her English class.  I realized when i was talking to a friend of mine that I had never read anything about the Holocaust.  Yes, this includes the Diary of Anne Frank.  I'm not sure how I escaped High School without having done so. 

Anyway, in an effort to aid her studies, I'm reading along with her so we can chat about it. 

Okay...the least well-received stuff I write is where I preach, so I promise I will try not to preach.  But I just can't help feeling alarmed at current events, and it's so timely that I'm reading this book at the same time and it probably makes me more sensitive to the parallels than I would typically be which makes me MORE worried.  Anyway.  This is a bit of a rant.

I haven't turned this into a Trump says this/does this sort of life lesson for Emma, but I do see some interesting parallels between what's rumored in the news about Trumps plans, this book about Mr. Wiesel's experiences being shipped off to Auschwitz, and several everyday anecdotal experiences that I shared with Emma.

So we're reading this book.  Have you read it?  I'm talking out some of the main points I took from the first two chapters with Emma and I just keep coming back to this one thing that really sticks in my head and my heart. 

They thought nothing like this could ever happen to them.  In "this day and age".  It was too inconvenient.  Too costly.  The Germans were on the verge of losing the war anyway, they thought. 

They talk about a foreign Jew, Moishe the Beadle.  He, and all the other foreign jews are forced to leave Elie's hometown of Sighet, then in Transylvania.  They send them away, but Moishe returns.  And he returns to tell the story about how they were sent to Ukraine and forced to dig a trench that they ultimately murdered the jews and shoved them in.  He returns to tell the Jews of Sighet how a father begged them to kill him so that he wouldn't have to watch them kill his sons in front of his eyes.  I guess he escaped.  I have to reread that piece.

And...

Nobody believes him.  They think he wants attention.  That he's crazy.  Whatever...That was in 1942.  Two years passed.  The book talks about how even Moishe stopped talking about his experience.  I guess by then he was tired of talking to people who wouldn't listen. 

The Germans come to Sighet though.  They come to Sighet and they're billeted with families in their homes.  Even in the Jews' homes.  And it's inconvenient but they're pretty polite and everyone seems to get along, so they just sort of adjust to the new normal.

Then they're forbidden to keep gold or valuables, forced to wear a star to show that they're jewish, forbidden to leave their homes for three days...and all that sucks...but you know...it's not like they're going to systematically murder them.  Right?

And then they pushed the Jews out of their homes and into two ghettos.  Moishe the Beadle runs door to door basically yelling "I TOLD YOU FUCKERS!!" and runs off without waiting for a reply.  That quote is mine, by the way, but Wiesel talks about it happening.  Families living with families.  They black out the windows facing out into the city.  They surround the ghetto with barbed wire. I tried to put that into context for Emma.  Someone comes to our house and tells us we have to move.  Right away.  We all have to move to one community and live in a house with other families.  They're taking our house.  

And the Jews...some of them think...this is actually a good thing.  Now we don't have to see all their glaring angry faces.  Now we're all together.  We can be with our own people.  This is okay.  And they adjust.  It's not like we're being systematically murdered.  We're good.  We've got this.

And everyone gets used to it.  Until they tell them they're getting on transports.  Everyone is to leave their homes.  Stand outside.  Roll call.  They're forbidden to get food or water.  They stand in the summer sun for hours waiting to be called.  Some are and off they go on the train.  Some stay behind waiting for the next day.

And the Jews...now they're speculating...where are we being sent.  And some of them are like "Hey...this could be for our own safety.  They're sending us away from the fighting.  The Red Army is marching here...we'd have been on the front.  This is actually a good thing."

Elie and his family don't get sent on the first transports.  They're sent to the other ghetto to live.  Their family's old maid makes an appearance and tells them that she has a safe place outside Sighet where they can all stay, but Elie's father is like "Nah, we're good.  The kids can go if they want but I'm staying with my wife here."  And I want to shout at the book.  GO YOU FOOL!  But I also get it.  They really think..."this can't possibly be as bad as all that." 

So a few days go by and again the Jewish community settles down.  This is cool.  We've got this.  It's too late, they think.  It took too long, they think.  They're just going to keep us here.  But they didn't.  They loaded them on the train after roll calls for hours in the hot summer sun without water. 

And I won't tell all of the story of chapters 1 - 3, but...the train ride is standing room only.  80 to a car.  You can't lie down.  All of them can't sit at once.  They have to sit in shifts.  For DAYS.  DAYS!!!  And I again try to put it into perspective for Emma.  How hard it is to sit...SIT in an airport waiting for the plane.  And it's delayed for a few hours.  And it's boring and sucks and Lily is pissed and we're all frustrated.  But...instead of hours it's days.  Instead of sitting it's standing.  Instead of a comfortable chair it's standing shoulder to shoulder with other people.  No air. 

One last little bit from the book.  They get to Auschwitz.  They see the chimney.  Choke on the smoke of their dead.  SEE children fed to the fire like logs.  They are interviewed.  Marched.  They don't know where.  Did they say the right stuff or the wrong.  They've already been separated men from women, so Elie's mother and three sisters are nowhere to be found.  And the young men in the group start finally thinking...REALLY thinking about their mortality.  And that this is it.  That they really are truly going to their deaths.  And they start thinking...fuck this, we'll get these Nazi bastards...BUT....

The older members of the group TALKED THEM DOWN!  Relax...this isn't as bad as it looks.  Don't die for nothing. 

Okay...end of book report for Chapters 1 - 3 of "Night".  Now on to my own experience. 

At once I am both amazed and understanding of their failure to rise up.  The herd mentality I suppose. I enumerated all these "signs" to Emma.  They ignored Moishe, and giving up their valuables, and barbed wire and ghettos and transports and even smoking chimneys.  It couldn't happen to them.  How could it??

Sometimes I would take Leslie to Chemo treatments at Magee hospital in Pittsburgh.  We were on the fourth floor I think.  I can't really remember.  One week the fire alarm went off.  I looked around.  Nobody moved.  It continued to ring.  Finally I got up and talked to the nurse.  "Oh, they'll probably make an announcement about it in a minute or two."  They never did.  The fire alarm was going off and nobody even BUDGED.  Couldn't be a fire.  We all waited for someone to tell us that the alarm was actually real.  Like that shrieking klaxon couldn't be believed because..."it can't REALLY be a fire."

And the uprising too...everyone waiting for someone else to make a move.  Someone else to step forward and make a stand.  I was telling Emma how when I was going to college I worked in a mine.  They made you watch like two hours of safety videos.  One of the videos talked about how in a crisis everyone will stand around and watch but do nothing.  Even if someone is...say administering CPR to an unconscious victim, if that person says, "Call 911!" to the group, nobody will move...because everyone is thinking...'someone else will do it'...or 'someone else probably already did it'.  And I told her they teach you to point to a person and say, "YOU!  Call 911!" because that's the only way anyone will move. 

And so now we're talking about building walls.  And we're scared of terrorism so we're talking about registering Muslims like they're Jews in Nazi Germany.  And random racial violence and rejoicing seems like it's sporadically bursting out all over the country because people see our president-elect's silence to be tacit approval of their "making America great" by shouting racial epithets or spray painting people's houses, or leaving them notes about how they should go back to Africa or "get the fuck out" of our country because that's apparently what will make it great in their minds.

Today I was looking up Martin Niemöller's poem.  Do you know it?  I think it's pretty telling.  Niemöller was a protestant in Germany who felt good people were complicit in the atrocities that happened to the Jews in Nazi Germany.  They were complicit because they were "good" but didn't do more to stop it all from happening.  His poem:

First they came for the Socialists, and I did not speak out—
Because I was not a Socialist.

Then they came for the Trade Unionists, and I did not speak out—
Because I was not a Trade Unionist.
Then they came for the Jews, and I did not speak out—
Because I was not a Jew.
Then they came for me—and there was no one left to speak for me.

Are we on the cusp of that?  Are we on the cusp of people "coming for the _________"?  It could never happen here.  Never!  You know...just like the Jews of Sighet said before the trains came to carry them to the fucking FURNACE.  I've seen a lot of heinous racist bullshit on facebook this past week.  Basically people pointing out that...you know how everyone feels like this is an enlightened age and racism is soooo much better than it ever was...that sort of thing...these sorts of posts fly in the face of that blissful ignorance.  There are PLENTY of racists still alive and well and happy to raise a little hell in the name of their Fuhr...er...president-elect. 

White Supremacists praised Trump's appointment of Stephen Bannon.  Glenn Beck...let me say that again...GLENN BECK even knows that's ridiculous.  He says of Bannon...Stephen Bannon gave a voice to white nationalists.  Awesome choice.  What the fuck.

Everyone loves Jon Stewart.  He's talking me down.  A little.  He said, "We also have to caution ourselves to the complexity of that history,” he said. “I thought Donald Trump disqualified himself at numerous points. But there is now this idea that anyone who voted for him has to be defined by the worst of his rhetoric. There are guys in my neighborhood who I love, I respect, that I think have incredible qualities – that are not afraid of Mexicans and not afraid of Muslims and not afraid of blacks. They’re afraid of their insurance premiums.”

So yeah...people voted for Trump for a lot of different reasons.  BUT...here we are.

And while insurance premiums are important, and a good economy is important, and free enterprise and homeland security and all that is important.  I see a guy with no plan to achieve that.  I see what's happening in the news and think..."Did you all just basically sign a deal with the devil?"  The ink is still wet on the signature that implies..."I don't care what happens to the rest of the country, as long as I have a solid interest rate, don't have to send my kids to war, and can hold onto my job, amen."

I'm not ready to claim that Trump will be Hitler.  I'm just saying...are you afraid at ALL of what this country could look like in four years?  I kinda am.

I just don't want to be writing poems or books about how we all ignored the signs...you know the signs I mean, right?  Basically everything Trump has said or done in the past two years plus his body of work prior.  Those kinds of signs.  I just don't want to ignore the signs when something even worse starts happening here.  Like we all did in cancer ward.  Like the Jews of Sighet did. 







Thursday, November 3, 2016

Hoco

This is probably my longest hiatus.  I started and stopped writing a few times.  I haven't stopped writing permanently...just had a long break.  It happens to me sometimes.

In the meantime Emma went to homecoming. I was asked to speak at AC of PA's gala.  The local paper did a story about my tattoo (for Les).  Lily rocked Halloween (three houses worth).  My cousin got married.  Probably lots of stories I'm forgetting.

But first...homecoming (Hoco if you're hip.  Hip like I am).  How to write this respectfully of Emma's privacy...fuckit...she belongs to me until she's 18.  I'll try...but no guarantees.

Emma's a freshman now.  She really seems to have taken to high school.  Her grades could use some work, but in terms of fitting in and finding a happy place she seems to have insinuated herself into the ebb and flow of social circles like she always does.  Never the focus.  Never one person or one group.  Just sort of shifting from circle to circle.  She doesn't know this is supposed to be "hard".  Maybe it will be as school goes on, but right now it seems pretty effortless.

She was asked to go to homecoming.  They were going as friends.  She's known the boy for years.  They've been friends for years.  She was happy to be going.  He surprised her with a sign at the mall.

When did this become a thing?  It's a thing.  You can't just ask girls to go to dances anymore.  You have to be creative.  You have to have a flash mob or have confetti bombs that transform into doves that fly in formation to form the words, "will you go to homecoming with me" or something.  Kids are judging each other on these things.  Best step up your game, boys. 

We went to my sister's house to celebrate a birthday...my dad's, I think, or maybe it was my father-in-law's.  I can't remember.  Emma and Dawn went to my niece's closet to look at the ghosts of homecoming dresses past.  Emma did a little impromptu fashion show for us.  She looked so pretty in the dresses.  We decided we could alter one of them for homecoming that she really liked.

I won't bore you with the minutia of the fitting and altering.  The dress looked great.

Plans were in place.  The girls with dates would meet early to get pictures taken.  The girls going as a group without dates would join up with them later to get a group photo.  Homecoming was two days away.

And her friend backed out.  Which...honestly, I was like...okay...that's pretty sucky, but at least she's going with a bunch of her friends, and they were just buddies anyway, so this shouldn't be a big deal, right?  Wrong.

She had this image in her head, I think; this image of the quintessential dance experience.  And that image became extremely important to her, I learned when she came to me, crying.  I corralled her into a hug.

"Do you remember the day you and mama told me she was going to die," she started, breathing into my shoulder, her words muffled?

"Yes, baby." My eyes closed tightly at this.  I braced myself.

"You left the room so that we could talk alone together."

I nodded, a pressure building in my chest.

"Mama said she was going to watch me at homecoming.  She was going to look down at me at the dance and that she'd be with me and she'd be smiling"

Fuck.  Me.  It started as an ache around my eyes and then they were brimming with unshed tears and I sniffed and said, "Oh baby...and now you're afraid she won't see you having fun at the dance."

And she nodded then into my shirt, words impossible.

And I couldn't do anything to defuse the tension.  No joke to make her laugh out of her mood as I so often can, because I couldn't fix anything.

So we talked for a while.  About why he might have backed out.  About what she could do.  He had no way of knowing just how important this dance (THIS DANCE, goddammit!) was to her.   As we talked she calmed.  I am always amazed at her resilience.  She wanted to know what was up, but it was late so she had resigned herself to talking to him the next day.

They talked at school.  I won't air that piece.  He was going.  He had his own reasons for wanting to back out, but he told her he still wanted to go.  It wasn't about Emma.  There are pressures on young men in high school that I remember all too well.  I can speculate all day on any number of reasons he might have gotten cold feet, and all of them would be "good" reasons.  But I didn't care in end...my little girl had a dance to attend, her mother looking down at her and smiling I'm certain.

She looked beautiful.  The girls with dates got together early and had their pictures taken.  As planned.  The other girls joined them and had their pictures taken.  And then they all went to the dance together.  They were laughing, Emma hamming it up per usual.



I texted her that night a little after the dance started.  I knew she wouldn't see it then, but hoped she would later, and know I was thinking about her.

"I hope you are having a blast!"


A couple hours later she replied, "I had a great time"

"I'm so happy for you"

"Ah it was so great"


And I could hear her saying the words, sort of laughing the word "ah" out the way she does.  I looked at that last message on my screen for a while.  And I thought about Leslie.  And then I let out a long contented sigh and the pressure in my chest went away.






Friday, August 12, 2016

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.








Monday, July 25, 2016

Aromatherapy

I went grocery shopping with Lily on Saturday.  Lily likes grocery shopping.  She gets to pick out her racecar(t) in red or blue and she sits somewhat snuggly, her legs looking long and too sharply angled as she sits diagonally across the front seat, but contentedly as we 'vroom' around the grocery store, as I try to get her to find colors in the items on the shelves.

She started to wind down a bit toward the end.  As I was looking for facewash or hand cream or something for Emma, she reached over and knocked a packet of foaming bath soap into the cart.  I finagled the cart further away from the shelves and pulled the soap packet from the cart to place it back on the shelf.

It had a duck on the front.  I don't remember what exactly it was called, but it was lavender foaming bath soap.  I have made Lily's bubble baths with Johnson's Baby Bedtime Bath since she was born.  I love how she smells when she's done.  But...it doesn't foam up as much as I like.  So after placing it back on the shelf briefly, I snatched it back with an internal "what the hell" and tossed it into the cart.

I googled it.  Here's what I used.
Sunday when I was starting her bath, I remembered the packet was still on the kitchen island, and ran downstairs to grab it.  I ripped the corner and dumped some into the bath under the tap.  It bubbled..."foamed" might be an overstatement, but it was fine.

And then the smell hit me.  Lavender?  Was THIS what lavender was?   I knew that smell.  Didn't like that smell.  I was on the fence...deal with it?  Dump it?  I went downstairs to check on Lily, then came back up to turn the water off before the bath got too full.  It seemed like the smell was stronger.  It was giving me stress.  I could actually feel my pulse increasing.  I laughed at the absurdity of it even as I reached into the tub and pulled the plug.  A friend texted me and asked me what I was up to.  I said I was draining a tub full of lavender scented water that was giving me PTSD.  She said, "but it's calming!  Lavender is calming!"  Irony.

I'm sure she was right though.  I'm sure lavender IS supposed to be calming.  It was the smell I always smelled when Leslie's sister Lauren would visit to sit with Leslie and reassure her, giving her foot massages with calming, lavender scented oils.  Lauren's visits were always just what Leslie needed.  They connected together in ways that Leslie and I couldn't or didn't.  More spiritually, I think, since I was always so skeptical of that sort of thing.  Lauren and I were sort of complimentary nurses when Leslie was bedridden at home.  Each of us lent her something that she needed, with perhaps a bit of juxtaposition, but neither of us could seem to duplicate precisdely what the other provided. 

Before I finally caved on hospice, she would take her turn sitting with Leslie so that I could sleep.  I never did, but that was the goal.  She would stroke Leslie's hair or rub her feet or hold her hand.  And always it was with that lavender oil that Leslie loved and I tolerated for her sake.  In the end everything Leslie wore smelled of lavender.

And now when I smell it all I can think of is her last month or so in our bedroom laboring for breath.  And I don't like it.

When the tub was empty I sprayed Tilex all around the rim and scrubbed it down, the strong chemical smell of the bleach overpowering the lavender.  I ran the shower and sprayed down the sides of the tub, then filled it again, this time with Johnson's Baby Bedtime Bath.  I turned on the fan and went back downstairs to check on Lily.

Maybe there really IS something to this "essential oils" biz.  Definitely affected my mood...





Monday, July 11, 2016

Three Short Tales

Emma and I watch Adventure Time.  I love that show.  There's so much that kids miss that adults can enjoy about it.  It can be a sweeping mythic epic, or just a couple friends having adventures, and it adapts to the viewer.

The reason I bring it up is because there is one type of episode that they do called "Graybles" that Emma (and myself to an extent) don't love.  They're little short episodes that are all linked together with a common theme.  One episode had four built-in stories where the theme was "tables", for example.

But I have about three blog posts to write, and none of them is particularly long, and it made me think of Graybles.  So I hope you don't hate Graybles.  I'll see if I can come up with a theme for you to guess at the end.  And no, it can't be the same theme that you always see..."Jim is a dumbass".  It'll be special for the stories.

1.  Teenagers.

A couple days ago I wrote a little about how Emma has become a full blown teenager over the past six months or so and the DAY after I wrote it she did something that was soooooo much better an example then what I had previously written.

We were sitting at the table eating.  Lily was watching TV.  Emma finished and was going upstairs to shower.  She kicked something as she passed and looked down at it.

"What was that?" I asked.

"I'm not sure," she said, and bent to pick it up.  It was a folded receipt or something that must have fluttered off the table.  She held it up for my inspection.

I nodded and muttered, "Oh."

And she... put it back on the floor.

I stared at her.  I know I just complained about this a few days ago, but this was a whole new level.  "EM!"

She looked back at me.

"Really?"

She got this sheepish look on her face and we both laughed about it, but it is quite literally just her not feeling like throwing away/cleaning up/putting away/whatever unless she has received specific instructions from me.  Everything else is just a "dad job"

She threw it away, and went happily to her room to ignore some other chores, I'm sure.

2. Ironic Grief

I was in bed with Lily, about to read her the story of "The Napping House".  Lately she's been requesting it.  I'm not sure why exactly, but she gets into it.  I provide her some pregnant pauses at the end where I've inserted sound effects in the past and she dutifully fills in the blanks.

I hollered at Emma that Lily was going to bed and Emma joined us, crawling into bed with her and with me and we sat there getting ready for the story.  Dobby padded in and Emma hopped off the bed to gather him up into her arms.  She cradled him and carried him back to the bed with her, holding him as I was about to begin.

"Now the whole family is together!" she said happily.

At that moment...almost all at once, I thought several things.  I can't tell you which was first or second, they were all jumbled.  Perhaps the most memorable was that sinking feeling of dread or loss like vertigo.  This is our whole family now.  Leslie's not part of it.  And yes...of course she'll always be a part of it.  But that comment, made so casually, was a statement of fact.  And that hurts.

The other thoughts were more complicated.  Less visceral.  Yes...our whole family is together!  And it was a happy thought.  Here we are all together on the bed reading a story just like we always have.  Business as usual.  Life is going on, and it's not passing us by, we're living it.  We're forging a happy adapted new family unit out of the loss of their mother and my wife.  And it's not a gloomy one-day-at-a-time just keep swimming sort of life.  We're happy together.

And then finally the worry...or perhaps it's the hope, though I suppose they are two sides of the same coin...that Emma truly IS moving to a place of acceptance and happiness with our family a year and three months after her mother's passing.  I owe her another chat.  Sometimes when she's feeling conversational.  I can make that happen.  I need to make that happen.  Just to make sure she's doing well.

In one of the many ironies of grief, I want for her to be able to move forward and be happy while simultaneously wanting her never to forget the loss and how much it meant...and means.

But I think we're doing alright.  I think we're going to be okay.  :)

3.  Adventure Time

Lily and I continued adventuring this weekend.  This week we went to a place called Trillium Trail.  It's actually the place I tried to take her last week, but I didn't drive far enough, panicked, and ended up at Salamander Park.

So this week we actually HAD an adventure.  We started from the base.  There was a map. 
I saw "falls" marked on it and thought that sounded awesome.  So we started tramping along the trail and without moving more than perhaps a tenth of a mile, we ended up at a fallen log in the midst of some branches.  Lily climbed up it and over it, and we made it another 50 feet or so along a stream before deadfall blocked our path and we were forced to turn around.

It was a bummer, but really no big deal.  Lots more trail to explore.  We headed back and Lily stepped up over the log, but her foot slipped and she fell forward.  I had her hand, so she didn't fall, but her foot slid between the log and a bit of bark that sheared away from it.  At first I didn't notice, but her leg was between the two.  She was more or less caught. 

When I did notice a moment later, I reached down and pulled the bark away from her leg so that she could pull her foot free.

Thousands of tiny ants were boiling across the inside of the bark and were on her leg and I hurriedly pulled her leg out and started sweeping the ants from her as we crossed the log.

I thought I got all of them.  I still think so.  But as we started walking back to the trail head Lily would bend to scratch her leg.  I had walked through a nettle or something previously, and it itched, and I wondered if it was just that...or had the ants bitten her.

We retraced our footsteps to the trailhead and started up a new path.  It cut deeper into the hill and we climbed up rock steps from the other side of the creek, watching as it began to drop away below us, climbing next to a growing ravine.  We stopped when we reached the fence that said, "Private Property".  It was crowned with razor wire, which I thought was a bit extreme until I later learned that it was owned by the Heinz family.  Specifically Theresa Heinz Kerry.  Behind the fence I spotted a calm green lake and long slatted board walk dock.  Presumably this was the source of the falls, though we never saw them.

Back down the trail we went, stopping for benches and rocks to sit.  Lily loves the benches.  We took a couple pictures.
  Lily slipped and I caught her, but after she'd already braced herself with her hand.  Now she was scratching her arm and her leg.  (mostly her arm at this point)

I wanted to get to the stream and just wash her leg off, but I wasn't finding the right trail.  We made it back to the trail head and took one last branch.  This went through a clever little...deer gate?  animal gate?  It was open, but it had a little switch back built into it.  Lily started tell him that her arm hurt.

The new branch eventually split and looped around, sloping down to a broader creek, and Lily splashed into it up to her shins before backing out again and standing on dry land.  I bent to the water and splashed some up her leg, rubbing her off.  Then I wet her arm and washed that off too.  I noticed she had welts on her arm where she'd been scratching.  Poison ivy?  I washed my own leg off too.  We sat and took pictures and watched the water skimmers (or boatmen if you like) skating across the shallow pools of the creek before Lily began asking for McDonald's.

As we started back, I noticed my leg no longer itched.  Lily had stopped scratching her leg too, and the welts had faded from her arms.

"My arm feels better, daddy," she told me.  And the worry and tension I'd been holding in my chest drained away and we held hands and walked under the shade of the trees until we got back to the car.

Just before reaching the trail head I spotted a patch of sunlight blazing through the canopy of the leaves and I told Lily to stand in front of it.  I took her picture with that green glow behind her, her shadow spooling out in front of her, and then we got in the car and she got her nuggets.

Every good adventure should have a happy ending.

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

Guess the theme?


Tuesday, July 5, 2016

Mischief Managed

Emma has officially entered her typical teenage years.  She's now spending most of her free time with friends, and has started asking for money between allowances. I knew it was coming.  I just didn't expect it to be so sudden.  And honestly...I'm happy for her.  She's always been a bit of a homebody.  This will be good for her. 

Never a stickler for "tidy" she's now tipped past untidy into teen angst "Full slob".  Her language skills, once quite adequate, have dipped into a mode of interpretation so literal that unless I spell each thing out for her in exhaustive detail only the exact one thing I ask her to do gets done.   "Put your clothes away then come back down" is useless at this stage.  It must be, "Put the clean clothes from your basket into their respective drawers, unless they go on hangers, then put them on hangers and hang the hangers in your closet.  Put the dirty clothes wherever they currently are into the hamper.  If the dirty clothes are only dirty because you tried them on and decided against wearing them, then they are not dirty clothes and must be put away as if they are clean clothes from the basket."

This language does not survive week to week.  What is understood as THIS week's command to put away clothes in exhaustive detail is not retained for any OTHER week following.

All of her chores require similar specificity. 

And Emma doesn't have many of them, but one of the few that she has is to feed/water Dobby our cat.  The process started out like this...Emma feed your cat.

Actual additional instructions now required:
Emma, feed your cat
  • dry AND wet food
  • and turn off the light when you're done
  • wash last night's wet food bowl
  • put the lid back on the dry food when you're done
  • refill his water dish
So, like other chores, as I notice something new that isn't being done that SEEMS like common sense to me, but was not mentioned in her scope of work, it gets added to the schpiel.

I was really struggling to get her to remember to put the lid back on the dry food container though.  I didn't want Dobby to get into it and overeat (cleaned up some cat vomit just this morning, by the way).  So I kept having to harp on her and harp on her from the other room, "Em, you need to put the lid back on the catfood container."

And she keeps impatiently hollering back to me, "Yes, dad, I know!"

This weekend I woke early and came downstairs and, once again, the lid was sitting next to the dry food.  "Dammit, Emma," I muttered under my breath, and resealed the container.

Emma was still in bed, and I busied myself with other things...making coffee, cleaning dishes, etc, until about twenty minutes later I heard a noise from the dining room.  I walked in to see Dobby standing on his hind legs, the container lid on the floor, his nose buried in the cat food.  The little fucker learned how to open the container himself!

I knew he wouldn't sit still for me to pet-shame him with a sign, so I just parent-shamed myself instead.

Tuesday, June 21, 2016

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.


Saturday, May 28, 2016

Long Time No See

Anytime I don't blog for a while I look back at it and think...god, there's so much to catch up on.  And strangely, or maybe completely normally...that muchness stops me from blogging anything at all...which feeds itself and etc etc.

So this is a quick catch-up post (no, mid westerners...not fucking catsup...jesus)

The walk went great...EXCEPT...it was pouring.  And I still have some general housekeeping stuff to take care of, including depositing a couple of the checks made out to me and writing a check made out to Autism Connection of Pennsylvania hereafter referred to as AC/PA.  Please pay someone on fiver to create that logo in AC/DC font...five dollars!

I've been struggling with this weird allergy-related (i think) cough for the past four weeks.  I want it to go away.  Lily too has spent the last month and a half in various stages of allergic or general sick-related behavior...coughing, runny nose, stupid sleep schedule...

And that in turn affects me when I choose to do adulty things despite knowing full well that they have the potential to come back and bite me in the ass.

Por ejemplo...

I went to Game 5 of the Pens/Lightning playoffs on Sunday.  It went into overtime and I had been drinking, and (after ubering home) got to bed at around 1:30.  And then Lily got up at about 4:30 and I woke up to attempt to get her back to bed bleary eyed and staggering down the hall...to finally soothe her into slumber at about 5.  I thought to myself...'at least tomorrow is Sunday'.  Cause it felt like it was a Saturday night...and the realization fell upon me like the proverbial hammer blow...my alarm is going off at 5:30 for work.  It's Monday.

Fine...whatever...I'll catch up with my sleep on Monday night, I thought.  And I put Lily to bed around 9.  I put a little Vicks under her nose in hopes that it would ease her breathing.   Then I finished lunches and stuff and probably collapsed into bed somewhere around 12:30.

I heard her stir around 1.  I'm not sure when she woke.  I let her stir a bit.  I was so tired.  I heard some weird sound though, and got out of bed to check on her.  She was sitting up in bed wide awake.  On the bed was an open jar of vicks.  I had left it on the headboard.  It's like I'm new here.  It was on her arms and face and in her hair and on the bedding.  I tried to get as much off as I could and finally got her to bed around 2:30 in the morning.  The alarm rang at 5:30 and I was like...Nope.

I got up and got the kids ready.  I gave Lily a quick bath, attempting to get as much of the vicks off her and her hair as I could and the kids went to school and I sent my boss a text and went back to bed, napping off and on until about 1 in the afternoon.

There are just no guarantees as a parent, and when you make the decision to party...you still have responsibilities to take care of...and there's nobody but you that can carry those out.  fYou choose to pretend that you don't have those responsibilities and sometimes the universe reaches out to gently (or not so gently) remind you that it isn't so.l  So I sort of got stretched thin.  And when I don't get enough sleep...and enough to me is about three hours less than most people...five works typically...six is like sleeping in...my patience gets MARKEDLY worse.

Tuesday she slept all night.  She HAD to have been tired as hell.  She woke up at five, but that works for me...only a half hour until the alarm rings.  I just start my day a hair early.  I got a little bead bracelet in the mail that day.  Something that I thought looked cool and was only $8, so I amazoned it.

Wednesday she slept like shit again and was a huge pill all morning.  Just stupid little stuff all morning...screaming, spitting, defiance...her nose was stuffy, and I'm sure that was a big part of it...coupled with her shitty sleep.

And as each little thing piled up in the stress queue I could feel my chest tighten up and the burn build and she bit through the little bead bracelet and beads scattered across the floor and I had a LITERAL jumping up and down (like you should have seen it.  It had to have been comical) temper tantrum.  The house shook from the jumping (I'm addressing this on the treadmill currently).  And then she was on the bus and on her way to school and I had a day to just be depressed about losing my shit so thoroughly and got home and started all over again...

But she slept fine Thursday night and I woke feeling more or less repaired.  We had a nice morning and I sent her to school happy.

So recap:  I didn't get a lot of sleep.  I lost my patience.  I lost my shit.  I got both back after a good night's sleep Thursday and Friday and I'm back and better than ever.

I had a friend tell me that I needed to be more flexible...that I needed to be more spontaneous.  She was kidding...to an extent.  But I told her then, "Responsibility is the natural enemy of spontaneity."

Ironically I think I COULD be more spontaneous if I was a little better prepared.  If I had plans in place at all times I could probably just go grab a drink or a bite to eat or see a band at a bar or something, but getting those plans in place is...part of the responsibility.  And it's exhausting to have all of that planning in place just to support the possibility that something fun will come up.  It's just not something that I think single parents can do.

And please...no plea for pity here...i get SO MUCH help and support from my parents and Leslie's parents...even from Emma, who watches Lily these days so that I can spread my wings a little.  But I need to keep remembering the consequences for too much fun and too little preparation.  Because the responsibility part is my priority.

Anyway...school is about to end and the kids' recital is only a week away and some of the schedule fullness and stress is hopefully going to alleviate and let me calm down a bit.

I met with Watson (Lily's school next fall) to go over her intake IEP.  It went well.  Tickets are lined up for the recital and I have a plan in place for Lily during the dance.   Vacation is scheduled and paid for.  Steeler season tickets are ordered and paid for.

The last looming thing is school.  Lily's home for the past six years...Marzolf...ends.  I have to write about that separately.  Lots of stuff there.  Lots of emotion.  Lots of gratitude.

But that's for another post.

All caught up for now.  Ish.

Wednesday, April 13, 2016

Just a Lil Walk V


This is the fifth "walk" for the Walter family.  Last year was the first time we did it without Leslie.  And probably I was a little too scattered to give the walk all my attention, but I think I can be forgiven.  This year, I have a redesigned logo, a tshirt sponsor in place, and a little bit...just enough of emotional space that I can provide a bit more focus.

Leslie loved the walk.  I know it delighted her how people came out of the woodwork online and in person to support little Lily.  Autism was Leslie's cause.  I know that it probably seems like maybe cancer could or should have been her cause, but Leslie was never comfortable with that.  She never wanted to wear pink.  She never wanted to broadcast her breast cancer.  Supporting Lily was her cause.  This walk was and is the "event" that the Walter family used to express that support.

Last year so many people came out of that woodwork.  I think because Leslie had just passed.  I think it helped to have someplace to direct your pain.  I think it helped to feel like YOU were helping.

I suspect this year a few less people will make it out.  We've all had a year to get used to it, after all.  But I hope I'm wrong.  I hope you'll come out and support us as we walk.

Please read below and consider joining us on May 14th as we walk for Lily.  Leslie will be walking alongside all of us in spirit.

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

It's that time of year once more. I'm inviting friends and family to participate in Highmark's, "Walk for a Healthy Community" with us again this year. "Just a Lil Team" will once again be marching for Autism Connection of PA (aka ABOARD). The beauty of the walk is that 100% of the donations go to the charity.

Four years ago around September, when this blog was newer and greener, I broadcast a plea for help to the autism community at large and asked this question, "To whom should I donate my money if I want it to benefit autistic people and their families and caregivers?" That post is >>HERE<<.

Anyone who was autistic said, "Don't give money to Autism Speaks". There were a lot of reasons, and most of them were good, but "don't give money to X" doesn't really help.  If not them, then who? The consensus was, "give to someone who can help autistic people locally, or give to food banks or shelters", because the sad fact of life is that many autistic people not receiving supports or services are the people in the homeless shelters and benefiting from the food banks. I'm paraphrasing the masses (it was not a particularly well-commented blog post of mine, but linking from post to post by others who had covered the topic, that was the message I got). One local autistic adult mentioned ABOARD, (Now Autism Connection of PA). They had helped her personally. I had attended a couple workshops they had put together with my wife, and had previously donated to them. They're the folks who put together the Autism Friendly Santa Visit every year at the mall, (they did one for the Easter Bunny too, maybe you saw pictures of Lily on Facebook)

Since then we've gone to many of their sponsored events:
autism-friendly:

days at an indoor playground
Santa
Trips to see the Pirates play
Nutcracker Ballet
Lion King
Art March
Gala
Symposium (in the Spring)
Grandparent seminars
Painting with a Twist
Wigle Whiskey

And these are just the things our family has attended. They've become our personal pet Autism Charity. We're forming a team again this year, "Just a Lil Walk Team", and using Lily as our rallying point. This is a cause that's important to her, or will be some day when she's able to take it up herself.

We'd love for you to join our team and walk with us on Saturday, May 14, 2016, at Stage AE on the North Shore in Pittsburgh, PA. (Registration is at 7:45 a.m., walks start at 9:00 and 9:15 a.m. if last year is any indication). OR...OR...you can sign up as a virtual walker. You don't have to be WITH us...to be with us. If that makes sense.

Here's the link:  Just a Lil Walk Team Page.  If you click that it should take you to the page.  Register as a walker, donate, or register as a virtual walker.  If you are walking with us, please get word to me what your t-shirt size is, so I can have enough shirts (and the right sizes) made.  Like last year I'll be ordering those nice soft shirts everyone seems to like.  Color to be determined...

OH!  Just to clarify something.  The Highmark page will ask you your tshirt size too.  That's because if you donate (I think it's $50) you get a free Highmark shirt.  When you click that size...I don't see it.  That's for Highmark...not Just a Lil Walk Team.  So...still need sizes regardless of whether you clicked that button when you registered.

I'll also link the event to the Just a Lil Blog Facebook page.   I've set a goal of $3,000.  I hope we beat it.

Lily and Emma and I will be down by the stadium at Stage AE on May 14th to walk. Whether we raise the $50 or $2500 or $10,000, we'll be there, and we'll have fun. And we'd love it if you could join us, or if you can't, if you could donate to the cause.

We have about three weeks to put together what we can sponsor/donation/team-wise so that I can get tshirts made for participants and make sure we get them in time for the walk.  After about the first week of May, I won't be able to change the tshirt orders.

Thanks,
Just a Lil Walk Team (Jim, Leslie (in spirit), Emma and Lily)

Monday, April 11, 2016

The Pocket-watch


This will probably be the only blog post I'll ever write where I use a trigger warning.  When I get to the part of the post that is hard to read, I'll warn you.  I'll even add "******" to mark where you can skip and where you can start again.  Just skip it if you are worried.  It won't change the story much. 

I don't typically like short-stories.  But I remember once in...god i don't know...maybe fourth or fifth grade, somewhere around there, I read this story called (I had to look this up) "That Hell-bound Train", by Robert Bloch.  It was in an Alfred Hitchcock anthology.  I thought maybe the stories would be scary or something.  Anyway, back before I had read enough short stories to know that I don't really care for short stories I read that one.  And it stuck with me.  At least the idea did.

Short stories irritate me because they're too short to develop the character or the plot or whatever so they almost all seem to rely on some sort of twist at the end to make them entertaining.  You just wait for the twist. 

So...how does any of this relate to me and my family?  I was thinking about the night before Leslie passed away.  One of our friends had posted something about April 6th...how we'd Facetimed with her and her family.  So many people had come to visit Leslie that night when we had moved her to hospice.  There was almost a holiday feel to it.

Within hours of being admitted she felt better.  She was breathing better.  The anxiety was gone.  The air of...suffering...was gone.  And I guess I didn't realize how powerful were the medicines at the disposal of the palliative care profession.  We'd been keeping Leslie afloat on pain and anxiety meds, each one wearing off too fast for the next one to be given.  Her oxygen demands were so high that the oxygen concentrator had to be replaced by three giant liquid oxygen cylinders.  She was at the highest setting.  There was no place for her to go.  The cylinder lines would freeze and had to be moved from one cylinder to the next as quickly as possible to avoid interrupting Leslie's supply of oxygen until the cylinder would thaw out.  She was breathing so shallowly.  My stress level...I pretty much was having a continuous breakdown...and then release...when I made the decision to move Leslie from our home to the hospice. 

And she felt SO much better.  It was a miracle, or seemed so.  It wasn't of course, maybe a little misdirection.  Slight of hand.  They'd changed the focus.  They changed it from treating her anxiety and pain to help her breathing to making her feel good for her last few hours, but I didn't really know that.  Or allow myself to know it, I guess.  That day so many people came to see her and call her.  And we talked for hours, friends filtering out as new people would arrive.  I really remember it as such a great day. 

I think probably because the frame of reference was so extreme.  To go from literally almost killing your wife (explanation shortly) to watching her laugh and chat with friends like she was just having a check up...well the contrast was sharp as a knife's edge.

This is hard.  And it gives me stress and anxiety to talk about.  And if you love Leslie and don't want to think about this kind of stuff, please just skip this.  I'll break it into a section of its own.  You won't miss much.  "It was a super shitty night" is all you NEED to know.  There...section marker starts here.

**************************
Leslie needed so much at the end.  Everything basically.  I tried to sleep when I could, but Leslie would wake up every hour or so, either in pain, or scared, or unable to breathe, and...there was virtually nothing I could do to help her.  Most of the time she needed her meds before I was allowed to give them to her.  Each time she needed something it was sooner than the last time she'd needed it.  Her sister was helping but even when it was "her shift" I sat awake, staring at the ceiling, or I would snooze briefly then have what I guess must have been panic attacks, waking bolt upright, the shortness of my breath almost a sympathetic reaction.  I started to imagine I couldn't breathe either. 

Imagine is probably not fair.  I was struggling with asthma from the cat.  But I think because of what Leslie was going through it started to really scare me.  To the point where I couldn't sleep.  And I thought of what Leslie's breathing was like.  And how much worse it was.  When had SHE slept?  How COULD she?

At that point, Leslie had difficulty communicating.  Talking requires a certain amount of stolen breath.  It's this discarded little bit of exhalation that anyone who can breathe normally doesn't even notice losing.  But Leslie...just...didn't have any breath left to steal.  She woke up early one morning just saying "Help".  I had fallen asleep.  I jumped out of bed and ran around to her, switching on the light. My pulse was beating like a drum.  I asked her what was wrong.  She said "help" again more loudly, gesturing.

I saw then that her cannula, the flexible clear breathing tube, had fallen off her face.  She had nothing.  No oxygen.

I grabbed it and tried to fit it back over her ears, but she batted it away.  I realized it was upside down.  She wasn't breathing anything at this point.  In my head I was holding my breath.  My mind was furiously calculating how after I regained my breath I'd be panting from holding it.  And there was no place for her to go.  No more oxygen.  No panting to catch her breath.  It was all gone.  Her breathing was already more pant than breath.  Instead of fitting it over her face I tried just holding it to her nose so she could get the oxygen. 

She batted it out of my hands.  "Help!" sharply now. 

I think she was panicked at that point.  It was wrong.  I was doing it wrong.  I had the thing upside down and the little air holes were facing up instead of down.  But it would work if I just put it on her nose, then we could figure it out after she was breathing again.  She couldn't breathe.  Who knows how long that thing had been out of her nose. 

I tried to explain, "Les, I just want to get you air!"  She shook her head violently.  Straining to sip the air now.  I was shaking, fumbling with the cannula, trying to turn it over in my hands so the inlet was facing right. 

And I got it.  I got it in place. 

And I lost my shit.  I fucking sobbed in relief.  I collapsed in a heap across her knees and I cried.  "I'm sorry I'm so sorry baby, I love you so much, I'm soooooo so sorry" through tears.  And I called the on call home hospice nurse and I told him I needed help. 

When the nurse came at three in the morning he asked me when I'd slept last.  If I'd slept at all.  I didn't know.  I think it had been about 36 hours, but I hadn't truly slept...8 hours...in weeks.  I said no.  He asked if I had someone to talk to about my current psychological state.  I said no.  He told me to take one of my wife's anxiety meds and then he told me it was killing me keeping her there and that he understood why we wanted her at home, but that he really thought it would be better for everyone if she went to hospice.

And I'm sorry about the drama of what I wrote above.  I'm not trying to write it for dramatic effect...but I also kind of am.  I want you to understand...this was fucking horrifying.  Worst thing ever.

That was the worst day of my life.  Strange, isn't it?  To think that was worse than the day when Leslie actually passed, but it was.  Leslie passing was so sad to me.  But it was...to an extent...peaceful. 

*************************

If you're rejoining us, I'd just had literally the worst day of my life.  And we had decided to move Leslie to hospice.  They loaded her into an ambulance and we followed her there.

So...the pocket-watch.  The premise of the story is that the main character makes a deal with the devil in this sort of Faustian premise.  The devil gives him a stop-watch and tells him that he can stop time whenever he is truly happy, and that time of happiness will go on endlessly.  Alternatively, he's required to board the Hell-bound train. 

And Martin, the main character, goes through life, rejecting each new and different iteration of his happy life in search of the NEXT bigger better happiness only to finally die of a stroke.

And the train appears on the tracks and the conductor (devil) essentially says that he's followed the same path all the others have, never satisfied with what they have, always looking for something more, the pocket watch has never been stopped. 

And Martin boards the train for one last hurrah before eternal damnation, partying amidst all the other sinners when the conductor comes for the pocket-watch.  "They knew where they were going, of course, but they didn't seem to give a damn. The blinds were drawn on the windows, yet it was light inside, and they were all living it up — singing and passing the bottle and roaring with laughter, throwing the dice and telling their jokes and bragging their big brags, just the way Daddy used to sing about them in the old song."  Here comes the twist... to the devil's horror, Martin stops time then...after the train has started its journey to hell.  It will never reach its destination.  Just one long eternal party.  Satan thwarted!


After I read it, and through the years I'd return to the idea of the time-stopping pocket watch.  I wondered what I'd twist the crown of the pocket watch for.  Drunken revelry?  Pleasures of the flesh?  Family togetherness?  I never really figured anything out.  I was too much like Martin and all the others growing up.  Waiting for the next thing.

And I thought of that last day in Leslie's room.  So happy by comparison.  It might have just been me.  Her parents had just been called back from vacation because we didn't think Leslie would make it.  It can't have seemed like a happy day to them.  It was loud in the room.  Laughter, some of it Leslie's.    But Leslie was smiling.  Talking.  TALKING...with stolen breaths she'd been without just a day before.  I had my wife again even for a day. 

There were some hiccups in her thinking.  She forgot things we'd talked about.  Got mad at me for something that we'd already discussed and agreed about.  She struggled to write, but seemed not to notice that what she had written was completely incomprehensible.  In hindsight maybe these were signs that she was shutting down.

It was dark outside.  She got tired.  Eyes started to close.  People began excusing themselves.  She'd perk up to wave good bye.  Chat a bit more.  Then she'd nod off again.  Eventually everyone left.  Her sister and her sister's husband decided to spend the night at hospice in the easy chairs there.  I went home to be with Emma and Lily.

I'd have twisted the pocket-watch on that day.  Even in hospice.  Grasping at eternal happiness.  Knowing there was no next for us. 

Leslie never woke.

I regret not staying the night.  I comfort myself with the idea that she never woke to miss my presence there.  I comfort myself thinking that she could hear me the next day as I told her I loved her.  That she was a warrior and that it was okay to let go.  That we would be fine.  We didn't want her to go but we would be okay.  I hope she did.

But I try not to think about that day. 

I prefer to remember the day before it.  And every time I think about it, it reminds me of the pocket-watch from "That Hell-bound Train".  I think I'd have stopped time then.  I don't think I'd have waited for the next thing.

That essentially is what I wanted to say.  I've thought a lot about the story and that day.  But as I was writing this, I thought there was something else I wanted to say, and that was this...

We wanted Leslie at home because Leslie wanted to be home.  We wanted her home because she was my wife and the kids' mother, and that's where she belonged.  But...if you find yourself in that situation...don't discount hospice.  I broke.  I would not have believed it possible to break me.  Too rational.  I have my ducks in a row emotionally, always have.  I have compartments.  Lots of them.  I can do it.  But I shattered.  Breaking doesn't do your wife or husband or mother or kids or anyone any good.  Consider the peace of mind that hospice brings.  What happened in the end will happen to us all regardless of venue.  But in hospice it happened peacefully, surrounded by love and family.  Serenely, even. 


---------------
Post script:

I found the short story online.  Honestly, before I wrote this I reread it just to make sure I had the details right.  It's not even that spectacularly well-written.  I don't know if it just isn't copyrighted anymore or something...it's an old story, but it's all there in text format if you'd like to read it yourselves:  That Hell-Bound Train