In a Nutshell

"So little to do; so much time.  Strike that.  Reverse it." - Willy Wonka

 Well we made it.  If you're reading this, we have not been obliterated in a nuclear war over some dipshit's twitter account.  Or, I suppose if we have, then Blogger's servers are robust as hell and your post-apocalyptic priorities are seriously out of whack.

We're in the home stretch of 2017 and it's been a doozy.  This is not, however, an end of the year wrap up.  Mostly just checking in.

I'm older and fatter than I was last year.  I KNOW WHAT I SAID!  And it's still not an end of the year wrap up.  Just...sayin'.  I'm going to attempt to jump back on that old wagon.  The diet and exercise wagon, I mean...not the fat wagon.  Although, if we're being honest, the fat wagon sounds pretty kickass and would also be an awesome band name.  "Fat Wagon".  I digress.  My metabolism has finally caught up with me and I'm going to take my own advice and not wait until the very end of the year as my "starting point" to resolve to get more fit.  Now is as good a time as any. 

Lily is still sleeping weirdly, but I actually think that's gotten a smidge better the last few weeks.  She's been falling back asleep quicker after waking at 3:30 or 4.  That's good stuff...if it lasts.

My home computer was on the fritz, so I had to take it to Best Buy.  They couldn't do anything with it and sent it to some data retrieval company.  They told me it would be anywhere from $250 - 5000 and I was REALLY hoping it wouldn't be $5,000 because... I had a bunch of pictures on there of Leslie and the kids that were duplicated nowhere else.  And I was thinking...I might actually have to pay $5,000 if that's what it takes to get those back.  Even though I don't really look at them, it's nice to know they're there for me and for the girls.  The charge was $450.  I was "happy" with that, honestly.

Now I'm thinking about getting my first Mac.  I've been a PC man all my life, so this change is big.  But it's probably time.  I've been using the lack of a decent computer as my justification for not starting my great american novel.  So I'll remove that hurdle and see what hops in front of it.

This time of year is stressful for lots of reasons, but mostly for me it's just how much shit you have to jam into the remaining time.  Lily's birthday is in a week and a half so that just gets added to the top of everything else.  And buying for her has never been easy.

If there's a saving grace to being slammed schedule-wise it's that it's easier to overlook missing people in our lives.  Obviously I miss her presence, but apart from that sort of...ambient grief, Leslie was a huge part of making the holidays go smoothly for the girls and me, and I'm constantly worried about how the holidays are affecting the girls in that regard.

The weirdest thing for me is how smoothly and effortlessly I can navigate my day without giving it a thought.  Like at times it feels so easy.  But also, if I stop at any point in time, I only have to focus on the loss for a minute.  Not just thinking...Leslie's gone...more like examining our lives without her.  And the tears are flowing.  How can both of those things be at the same time. 

It's like a scab that never fully heals.  Sometimes it itches a little and you think...I'll just scratch the edge and it'll flake right off, but instead it rips away and starts to bleed.  Meh...I'm looking for the right analogy.  That's not it.  Because I want to scratch that itch from time to time.  And I think it's a healing process, not something that makes it worse.  I'll come up with it.

I still have no home health nurse for Lily.  It's been since September.  I started out guns blazing.  I called every week for an update.  A few folks sounded positive.  But then one by one they either bowed out or said, "we'll start recruiting for the position" and I never heard back.  Now I call every few weeks, the list of agencies who haven't outright rejected her case slowly dwindling.  I have to keep calling, at some point my parents are going to burn out.  But they've been handling it since then.
I have to call the neurologist about Lily's epilepsy.  They were supposed to attempt to push through the blood test on my insurance and then notify me, but I haven't heard for months.  This is to determine what medicine she can use as a maintenance drug for seizure control.  It seems...importantish...since they tossed out the term SUDEP during our appointment.  And yet...here we are.

I tried making an appointment with a therapist to chat about 'things', but my first choice was a bust schedule-wise, and my doctor gave me a second name on a sheet of paper that I promptly lost.  It turned up a week or so ago and then I lost the damn thing again.  And there's no magic to this particular person.  My doc actually was like, "Oh!  I had a really great therapist to recommend to you but he died, so here's the name of someone who makes rounds here at the hospital instead."  Not much of a recommendation, but at least it's a name.  And the fact that I know that name is floating around somewhere at home is actually stopping me from just finding someone and calling them.  At the same time, I never remember to look for it when I'm there.  Meh.  I'll get there.

Lily had a great Halloween...visited every house in the cul-de-sac...HAPPILY.  She dressed as Anna from Frozen (second year in a row, but the costume had to be biggie sized).  I didn't dress up...

my attempt at pennywise

stranger things...

Emma finished "Sleepy Hollow" and next week are auditions for the musical.  "Anything Goes"  We'll see how auditions go.  I really hope she gets a part she'll enjoy.  So many talented students at her school, but I think she's one of them, and I'd like her to at least get a taste of the 'limelight' in high school.  This year has been SOOOOoooooo much better for her gradewise.  I don't know if it's just understanding the expectations of high school better?  More mature?  Whatever it is...keep it comin' baby!

Emma and I drove to DC for a "road trip".  We stayed at the W and their rooftop bar overlooks the White House.  That sounds more impressive than it was.  You could see it.  But it wasn't like you could launch water balloons at it.

We went to this cool exhibit of "nutshells".  This woman basically recreated crime scenes in dollhouse form to help the FBI train crime scene investigators wayyyyy backintheday.  It was neat, if somewhat morbid.

We piggybacked that with a trip to the Holocaust Museum.  That is a well done museum.  Probably could have spent a lot more time there, but we needed to check out and head back.  All part of my..."dedicate some time to Emma" campaign.  I need to ramp that up a bit.

Bought a new car.  Finally did what I said I was going to do early this year.  Sold my Altima and then traded the minivan in to attempt to buy one car that:  I could commute in (gas mileage), drive in the snow, drive to the beach.  Got a Subaru Forester.  It's super nice.  I already love it. 

Alright...anyway...busy month.  More later, but I already blew off buying candy for the kids' advent calendar to write this post, so time's a'wastin'. 

Merry ChristmaKwanzakka

Anniversaries

***The first half of this was written a couple weeks after Leslie passed**

I don't know how to do this.  There's too much ground to cover.  Eulogize?  Explain?  Vent?  Maybe all of the above.

My best friend...my wife... passed away on April 7th.  I didn't have a lot of time to prepare for it, but I suppose I had more time than most people do.  She'd been sick for years.  Cancer. 

I know, fuck cancer, but I don't even really hate cancer.  I just hate the circumstances.  This was round three.  The first two times we knew we'd beat it.  But it was like that cat in song that just kept coming back the very next day.  Always a sucker punch away.

It all started with a cat, actually.  We got Emma a cat.  I'm allergic.  Leslie always said, "I'm not allergic to cats, just dogs," but when we brought the cat home, she started coughing and wheezing just like I did.  She didn't like her PCP (primary care physician) so she hated making appointments, but my doc gave me Singulair and I started taking it and I got better.  She finally caved in and got allergy meds too, but she didn't get better.

We finally went to the doc and had an x-ray that showed fluid in the lining outside her lungs.  I can't make this super medical or complicated, or this post will be impossible to read, but where most people inhale and their lungs expand into the empty lining around their lungs...Leslie's lining was slowly filling with fluid that wouldn't allow her lungs to expand into it and she couldn't breathe.

They biopsied the fluid and it was cancer.  "But the cat came back the very next day..."  Metastatic breast cancer.  I made the mistake of googling what 'metastatic' meant.  Leslie didn't.  She didn't like to know the odds against her.

Scans/tests/new chemo...pleural drains/dressing changes...it got worse.  A couple months later she switched chemos and things started to stabilize.  But then they didn't.  And then the other lung couldn't expand.  And it got harder and harder for her to breathe.  And then she was wearing oxygen.  And then we were turning the oxygen up higher.  And higher.

It seems like that process took forever.  It seems like she was on oxygen for years in hindsight.  But she wasn't.  I think I/we were so busy reacting to symptoms that we forgot to tell people she was sick again.  Or maybe we were just tired of giving people the same bad news all over again.

She started working from home when she couldn't climb the stairs at work.  She never made it back.  She worked from home for months.  On good days she'd bring her laptop downstairs and we'd all be in the same room together.  On bad days she'd stay in bed.

I was leaning heavily on family and friends.

Leslie and I used to say that we'd never been tested.  Despite perceptions about what Lily's diagnosis meant for our family, with a few hiccups here or there, she never really tested our capacity to care for her.  As Leslie's ability to help around the house dwindled, I picked more up.  I had the room.  It's amazing to realize how much your wife does when she's not longer physically capable of doing it.  I picked up more and more things as she was able to do less and less, and STILL I thought..."I've got this." But it was only because my in-laws and parents were picking the kids up every day after school.  Leslie had lost the ability to walk to the bus stop to pick up Lily.  I started feeling tested.  I started to wonder just how any single parent could do that day in and day out without support. 

I'm very supported by friends and family.  But I know not everyone is.  I tried to imagine how I'd do it without support but couldn't.  I was getting to work late so I could drop kids off before leaving for work, but at least I was able to work a little later because grandparents were there to get my kids off the bus for me.  Sometimes they'd start cooking so that I didn't have to when I got home.  Sometimes they'd make the kids lunches for me.

Leslie was guilt-ridden.  She felt like she was abandoning the family.  She felt like she was failing me.  She felt like she was a burden.  I tried to tell her that caring for her was my greatest honor.   I struggled through tears to tell her every time, but I did..."Caring for you is a privilege.  I feel like I finally have a chance to pay you back for all the care you've given our family."

We finally went to the hospital when the oxygen concentrator at home pegged out at 5 lpm and Leslie still couldn't get enough to breathe.  She was having panic attacks in the middle of the night.  Sometimes three or four of them.  She'd wake me to help calm her down, fetch medicine to help her, turn up the oxygen...but then there was no place to go.  We needed help. 

We went to the hospital for a tune-up.  Get the meds under control.  Get the breathing under control.  Get the anxiety under control.  Her parents were worried.  It was their 50th anniversary and they'd arranged a cruise.  Leslie begged them to go.  Told them she was fine.  The day after she went to the hospital she was like a new person.  I emailed her folks to tell them how much better Leslie was doing.  But that was the high mark of her visit.  It went down from there. 

A few days later she was still in the hospital.  She had some close friends visiting and the physician's assistant pulled me out into the hall to talk to me.  "I'm telling you this because I think it's the right thing to do."  They told me that the cancer in her lung had progressed beyond their ability to treat it.  They gave me the option:  make her comfortable or keep fighting.  She had chemo scheduled the following week.  I asked how long they thought she had...sucker punch...absolute best case scenario, "months"...worst case..."today".

So I pretended I knew nothing while I went back in to smile and chat with Leslie and her friends and inside I was thinking..."Jesus, this can't be happening.  How did this happen?  How could we not have known?"  I think I spent the night that night.  The staff met with me the following day and I told them I needed to find out whether Leslie wanted to know.  It's something she typically wouldn't want to know.  I had them ask her hypotheticals about what if THIS doesn't work, or what would you like us to try if THAT doesn't work.  I knew that if I asked, she'd know. 

They got to a point where she told them she wanted to know and they told her, and then I went to see her and we just sat there and cried and held each other and I felt like somebody had just put a big hourglass on her bedside and the sand was running out.

We told each other so many nice things.  Every day from the day I learned, I resolved never to leave anything unsaid.  I told her how much I loved her and how much I respected her and how much she'd changed me and what a great mother she'd been and how much I'd miss her.  And we knew we had to tell Emma.

I talked to a social worker and a grief counselor and googled things and by the next day I'd made notes on what to tell her.  There is nothing I have ever had to do that is harder than having to tell Emma that her mom was going to die.  Nothing. 

So here are the notes...I more or less memorized them for our talk with Emma, but these are them:

"Some doctors think that the cancer on Mommy's lungs is too far along to stop. They don't think they can make it go away. And that Mommy's breathing will continue to get worse and not better, and that all they can really do is to try to make her more comfortable as it gets worse, not cure her.

We just found out about this. We didn't know how much damage to her lungs the disease had done. As soon as we found out we started talking to people about the best way to tell you. We don't want you to think we've been keeping it from you.  We just didn't know.

1) Doctors don't know everything. Mommy's cancer doctor still wants to treat her. They can guess. They can estimate. But every one is different. We just know that it makes sense to make the most of our time with mommy right now while we know that we can.

2) Your mom is a fighter. She is not giving up on treatment and neither should you.

3) God is with us always. God has provided mom soooo much comfort throughout this struggle. This isn't God's fault. Lean on God. Pray for comfort. Pray for guidance. Know that mommy loves God and that God loves us all.

4) No matter what, mommy will always be with us. Her love, her guidance. We want her to live with us as long as she can, but if she has to go, just know that her spirit will never EVER be gone from our lives.

5) We need to love each other and be here for each other. This is the hardest thing we will probably ever have to do. But we can do it because we are a strong family with a lot of love."

Leslie's three biggest worries...that Emma would hate God, that Emma would think she was giving up without a fight, and that Emma would think we'd hidden how sick mommy was from her.

And she took it very well.  She just sort of slumped slowly against Leslie in her hospital bed and Leslie stroked her hair, and she cried and buried her face in bed.   She spent the day with us in the hospital just being with her mom.

When Emma finally went home (staying there was too traumatic with the panic attacks) Leslie and I talked again.  About how much time she had.  And Leslie said, "I just want to see Emma get married," and I just shook my head and we cried.  And then she said, "Then I want to see her recital," and I knew there was no way, but I just said, "Let's get to chemo and then work on getting to the recital."

****

This is as far as I made it two years ago when I first attempted to write about Leslie's final time with us.  I decided to write about other things.  Good memories.  The stuff we've missed together already...the stuff she'll miss in the future...that stuff is just too hard.  Too sad.  Too unfair.  And ultimately...not a healthy way to approach this loss.  I eventually wrote more about it here...One to Make You Cry...but that day I just couldn't.

It's 9/11 today, and while most people are thinking about the lives lost in the Twin Towers and the Pentagon, and in Somerset...I'm thinking about my wedding anniversary, and the woman I lost.  The woman I married 18 years ago. 

A friend asked me if today is hard for me.  It's not.  I don't know why it isn't...but it isn't.  When I think of our anniversary I'm not thinking of hospital beds and labored breathing.  I'm not thinking of future anniversaries uncelebrated.  I do try to take some time to think back on a pretty happy, mostly successful marriage that...yes...ended before it should have.  It IS still sad to me.  When I allow myself to think too much about it, it's so very sad.  And honestly, I know that the hearts of the people who love me are in the right place when they reach out on our anniversary to give a little extra love or tell me to hang in there...but...ironically...this isn't hard for me unless I'm deliberately thinking about it, which those messages invariably force me to do. 

And please...if you're one of those people, don't stop doing you.  I know you're supporting me, and thinking about it, though sad, is worth my time.  It's worth it to remember something special.  Always. 

But...apart from snot-nosed blubbering from rereading what I wrote two years ago...this is still a happy day for me.  I made the right decision 18 years ago.  All the branched paths that our decisions took us on together led me here.  My family is doing alright.  Our children are such a joy to me.  The house we picked together continues to grow and change (for the better I hope) and I continue to remind Emma and Lily of all the little ways that their mom's love and life brought us joy.  Just as they remind me daily of how blessed I was in having children with her.


I thought I'd written about our wedding day and put it in drafts, but I didn't.  I kept inching up to it incrementally and then not writing it.  I thought maybe I'd  write about it for our anniversary, but there's too much.
 
*long breath in...hold it a few beats...long breath out*

I feel like I'm pretty mentally healthy.  But there's some weird stuff going on in my head space (heart space?).  As I move forward in my life and try to find "ME".  Not me without Leslie...just me...I'm encountering some residual fear and anxiety about relationships and opening up that may or may not have something to do with losing her.  It's nothing earth-shaking.  But it's something that I see is...NOT healthy.  Or MIGHT not be healthy.  So anyway, despite basically badmouthing the therapy industry my entire adult life, I'm making plans to see someone to just talk about it.  See if there are things I can think about...homework maybe...that will help me keep moving forward. 

Anyway, I feel like that's something people should know.  Not necessarily about me, but about life.  Sometimes you need help.  Sometimes you don't "got it".  And then you get help.  Sometimes going into the woods and breathing the clean air doesn't "fix it".  Sometimes "pulling yourself up by the bootstraps" doesn't "fix it".  Sometimes compartmentalizing doesn't "fix it".  There may be no fixing it at all, in fact.  There may just be "adapting to it". 

I'm happy.  I really am.  This is just something I need to address to be happier.  HappiEST. 

In conclusion...thank you for all your thoughts/prayers/hugs.  Please don't stop sending them when you think of it.  But also, just know...every day is just like every other day.  I honestly don't feel any sadder on the anniversary of the day Leslie passed than I do on the day we were married.  I don't measure time that way (maybe that's a good/bad thing...not sure).  You won't see yearly posts about THIS being the Xth anniversary of the day Leslie died (That day isn't something I care to commemorate.  I'd rather celebrate her life) or THAT would have been our Zth Anniversary.   

But...I'm fine.  I'm happy.  And when you ask me how I'm doing because today is X...it makes me sad but only because it takes it all out of the compartments I have carefully set up for it and dusts them off and makes me look at it.  But it's worth doing.  It's worth remembering.  It's worth being sad.  And then remember happier times together, celebrating them, and moving forward.

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.

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 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.  Sleight 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.

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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. 

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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. 


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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

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.

Endings

Caring Place had its final night for us this evening.  It was a good experience.  I don't know if it was an experience tailor made for someone like me necessarily, but it definitely was a good experience for me and for Emma.  It generated some nice conversations.

Caring Place is a group support "service"? specifically for the benefit of children who have lost a loved one.

So every other week for the past...four months...Emma and I have spent our Mondays with other families also dealing with the loss of a loved one.

Emma asked me if it helped me.  I hedged.  "It didn't hurt me."

A second went by as I considered.

"That's not the same thing as helping."

"I know, baby, I just want to be honest, let me think about it for a second."  And I thought about it.

I told her that I felt that it was helpful.  I told her that if nothing else it gave me a 'scheduled time to grieve'; a time where I didn't have an excuse to compartmentalize.

What I told Emma then was that I don't like thinking about it.  That I'm pretty content 90% of the time because I'm not thinking about it.  On purpose.  That when I DO think about it, I'm sad.  And I don't want to be.  The Caring Place for me became a time where I had no escape from thinking about it.  And I told her that was good for me.  Because I think it's good for me to think about the sadness and about Leslie and about loss...and that sometimes I'm just not disciplined enough to do it myself.

And it was good for me too because it made me feel like I was "doing something" to help give Emma an outlet.  People to talk to who "get it".

Emma told me that one of the things she liked was being in a group where discussing losing her mom or her mom's life wasn't "a downer".  Not that it wasn't still a downer...but everyone in the room was in the same boat.  It didn't stop conversation...it started it.  It was nice not to have to censor herself and just talk to people without trying to protect their feelings.

Ironic, right?

Did I love it?  No.  It wasn't necessarily my kind of place.  We did touchy-feely things that make me feel uncomfortable.  They were quick to reiterate that anyone could "pass" on any activity without judgment.  And they meant it.  But I was committed to the program...it just wasn't necessarily my thing.

Would I recommend it to someone...anyone else?  Yes.  Everyone.  Maybe it's not your thing.  Maybe it IS your kid's thing.  Maybe you might even find out that although you thought it wasn't your thing...it really WAS your thing.  Whatever.  Highly recommend it.

We did a square of a quilt that will hang in the Caring Place when it's done (in a month or two, I think).  They took a picture of Emma and I.  It looks weird.  We're smiling because we're having our pictures taken, but we're holding a square of a quilt with Leslie's memorial on it.  Yay!

Emma saw it and said, "I look so tired."
I looked at it and said, "My beard is so long."

But I thought...man we sure look happy.  Brave faces maybe.  Appearances perhaps.  But we are happy for the most part.  Just looks weird.

'Tis the Season

I know the last post I wrote (a month ago) I said I was going to write about our wedding day.  And I will.  But that's not what I'm going to write about in this post.

And it's not all doom and gloom.  But there's some gloom.  I don't know why I haven't written lately.  It's starting to get jumbled in my mind...the things I've written and the things I want to write.  Sometimes I'll catch myself writing things in my head and think..."I should write this"...and later it's hazy to me whether I wrote it, or just thought it. 

Anyway, there's been so much already written (by me) about grieving and processing and life without Leslie that I don't want to play like a broken record.  But this is it.  This is THE time of year I've been dreading.  The holidays are upon us.

First...Status Report:  We're doing well.  I'm looking at private placement for Lily next year (she graduates to fourth grade and will have to transition out of her current school situation anyway).  She remains more or less unchanged by all this still.

Emma just finished a play at school.  She played Juliet in "Romeo to Go".  It was fun to watch.  Funny.  These 'drama kids' have become her clan and support network.  She's doing well in school.  Sad at times, but overall seems okay.  She and I have been going to the "Caring Place" since late September.  They have ten sessions of "group support" spaced every other week.  We're going again tonight.  Halfway through.

I am doing well too.  I consider, as I always have, nearly every day a good day, though many days have sadness in them, there is more joy than pain.  I'm slowly...very slowly...getting the house back into shape.  Clearing out messes in Leslie's (now Emma's) office, and the dining room, collecting old computer equipment to put out for the garbage, cleaning the basement "weight room/dobby's room" and steam cleaning the carpets (fucking cat).  I get lonely at times, but I've been reaching out to friends more than I ever did before.  And I've been trying to go out more...to eat or to see a band (next week)...just getting some adult time. 

There is this feeling of...being on hold.  Like somehow grief and grieving needs to run its course before I can continue to live my life.  It still seems like most of what I'm doing in some way is based on a reaction to Leslie's passing...and not necessarily on just...living my life.  I have to really think about that.  On the one hand it feels right.  I still have a lot to process and work out before I'm just me.  Before I'm just living my life and not reacting to Leslie's death.  On the other hand it feels wrong.  Thoughts and feelings about and for Leslie will never NOT be a part of my life (though I'm sure they'll change and develop), so I need to just accept that as part of "me" and move forward with it.  Like I said, I don't know.

In the meantime, I'm doing little things for me.  Things that aren't separating me from Leslie, but that somehow draw a distinction.  Leslie liked my hair shorter, and certainly my beard MUCH shorter.  She would never have said no to anything I really wanted to do, but I liked keeping my hair and beard the way she liked it.  So I'm trying something a bit new with both.  I started using Trunk Club for clothes to just update my wardrobe a bit.  It's probably not going to last super long...because it appears to be expensive as fuck, but it helps me with ideas, and if I pick up a few high quality basics and build on it with other stuff, then it's worth it.  I haven't spent money on clothes (that weren't on my birthday or Christmas) in ...decades.  Seriously I was going through my closet and could pick out clothes that I knew I'd bought 15 years ago.  These little selfishnesses seem minor enough that they don't hurt to contemplate or implement.

I find I'm talking to Leslie less.  This hurts.  I compartmentalize a lot, and maybe that's part of it.  But sometimes I forget about the little butterfly monument and makeshift shrine/time capsule that the kids and I planted under the corkscrew willow.  The beauty of recognizing a thing you're doing (or not doing) and being hurt by it...is you can change it.  

Anyway...back to our story...

First, I want to say that I love the holidays.  Well...not Thanksgiving.  Fuck thanksgiving.  So many reasons that Thanksgiving irritates me, but I looooooooove Christmas.  And loving Christmas is unchanged without Leslie, though certainly her absence is a shitty contrast to "joy to the world".

So I had been thinking about Christmas...really I've been thinking about it since Leslie died.  There are so many things that I "thought ahead to"...things like Mother's Day and her Birthday and ...Christmas, happy/fun events where her absence will make them less happy/fun and more bittersweet.  And Christmas is sort of the grandaddy of them all.

Thinking about Christmas, I started planning for Christmas.  And the first pragmatic conclusion I reached was that unlike Christmases past...I wouldn't have that extra set of adult hands needed to either:  help decorate, help direct, organize tasks, or wrangle Lily.  So I decided to start decorating a week earlier than we used to.  Adapted tradition.  Every year we tried to decorate the day after Thanksgiving.  This year, Halloween damn near didn't go up (decorated the day before).  Christmas is just too special to our family for me to let that happen.  So I started dragging out the decorations yesterday.

Emma, noticing I was really beat the night before, tucked me into bed at about 10:15 that night.  The result was that I woke with a ton of energy and was able to get laundry and decorating started.

My folks offered to watch Lily and then have us over for dinner last night, but then switched gears when it became apparent that I was stressing out over being able to get as much done at home as I wanted if we went to dinner and just took Lily for a play date instead.

And I thought...okay...this is going to be okay.  And my sister took Emma to church so I started lugging all the decorations out from the basement behind the stairs to surprise her when she got home.

Having carted the Christmas tree box upstairs, I started moving the furniture to accommodate the tree.  The love seat is really heavy, but also sort of...flimsy?  The furniture twists a bit when you try to move it.  I think it's the result of having the ability to recline.  But it's shitty to move.  And I literally was thinking...I wish I had you here to help me, Leslie.  Like that was in my head.  You should be here helping me now.  And I budged the loveseat with my shoulder and it slid a bit against the carpet and uncovered a bunch of m&m's and some popcorn and paperclips...and...this picture:

And if you've read past posts you know that Leslie's friend Jen is a bit of a butterfly fanatic when it comes to lost loved ones, and I find myself much more conscious of it myself as a result.  To the point where it's become an important symbol of Leslie...and transformation...and ascendance of the soul, and of her watching us and helping us.  And so this stupid card that the school sent home with Lily one year to help her work on vocabulary (we told them she loves flipping through the pictures and labeling them, and we work with her on describing them) is revealed beneath the loveseat as I shoved it aside, my thoughts on Leslie and her help...and I kinda fucking lost it.  A little.  In my fashion.  I sort of gave that half sob sound thing and my eyes welled up and I held the picture in my hands and rubbed the wing with my thumb and felt a little sorry for myself before I smiled, chuckled a bit and thought..."yeah, I know you're here to help me when I need you, baby...but I meant lifting the couch, not emotionally, ass."  Leslie would have laughed at that too. 

So I think I was probably already a little emotional when I opened the storage bin of stocking holders and stockings.  There, put away inside the box in which we first bought it, sandwiched between foam, was the jeweled Christmas tree with "Leslie" engraved underneath for hanging her stocking.  Digging further, the faux fur stocking she had glitter-written "Leslie" across.  What the fuck was I going to do with that?  Even my stocking had her mark on it.  When we'd first started dating we bought matching stockings and wrote our names on them.  Mine came out horribly.  Looked like a 5 year-old had done it.  We kept them like that for years, maybe even until Lily was born, and when we couldn't find a fourth stocking that matched the other three...at last we bought all new stockings and I made her write my name so it would come out legibly. 

The gut punch of the stockings came as these things always seem to:  unexpectedly.  I really SHOULD have known this was going to prove harder than it started emotionally, and maybe that's why the butterfly 'proactively' flapped its colorful wings in my face...be strong, be ready, I'm here to help.  If you believe in that sort of thing...

I wasn't really sure what to do with them.  Throw them away?  I had no sooner thought of it than I had discarded it.  Put them up?  That seemed somehow worse.  In the end I waited for Emma to come home and talked to her.  I nudged her in the direction of "storing them for next year."  Sort of a planned familial compartmentalization until we were better equipped to deal with it.

In the end we finished perhaps 90% of the decorating before Lily got home.  Some things I just don't know how to do.  I don't remember how Leslie decorated the light over the kitchen table or the fixtures above the island...or the dining room in general.  I have boxes of decorations, but it's like looking at a jigsaw puzzle with no picture.  Except that I DO have pictures, I'm almost sure, and I need to go back through old pictures and see if I can piece it together. 

I had to push Emma to help more than in the past.  I don't blame her.  She's usually pretty eager to decorate the trees, but if she was somewhat less eager this year, I can't really fault her.

We're going to be fine.  Christmas will still be great.  But it will be great without Leslie, and so that will make it less great than it could have been.  But we'll manage, together.