Wednesday, May 27, 2015

Our Sauce

I wrote a few weeks ago about how I got gut-punched in the tomato sauce aisle of Giant Eagle when I realized my wife had passed without writing down the recipe to her spaghetti sauce.  I wrote about how this random thing gave me a sick sense of finality...we would never have "mommy's spaghetti" again.  It's here if you want to revisit it:  Leslie's Spaghetti.

Emma and I decided that we would make it a family effort to recreate the sauce.  We would honor Leslie's memory by trying to come up with the recipe for her spaghetti sauce together.  We set a date (because cooking sauce takes time and ingredients) and marked it on the calendar:  "The Leslie Walter Memorial Spaghetti Adventure".  In hindsight I wish I'd have called it a caper. 

Emma was in charge of meatballs.  But...she hurt her fingers and had bandaids on them, which she thought would not aid in the development of the appropriate flavors.  Also, she doesn't like touching raw meat.  So she supervised.  Sort of.  We had Leslie's recipe for the meatballs so their assembly was the least of my concerns.

I got my mother-in-law's recipe.  I got my former brother-in-law's tips.  And then...then I solicited the feedback of the good people of Facebook.  And they came through.  Here's a link to feedback in the event that you'd like to benefit from their collected wisdom:  Tell me everything you know about making spaghetti sauce.

What I knew already was this: 
  • Leslie did not like chunks, especially not tomato chunks (she hated tomatoes). This eliminated any advice involving diced/stewed/real tomatoes.
  • Leslie used red wine (at least a bit).  This...though somewhat grudgingly...steered me away from using vodka per one suggestion.
  • Leslie used tomato paste
  • Leslie used mild italian sausage links
  • Leslie used Contadina tomato sauce (5 - 29 oz cans)
  • Leslie didn't mind spice, but she didn't like it as much as I did. 

I then took what I knew and what I learned...and I started to cook. 

First I started the sauce.  I took an entire head of garlic, stripped it of its papery outer whateverthefuckthat's called and then garlic pressed it into a pot that had about two or three tablespoons of olive oil in it.  I cut up the italian links into about 1/2" pieces and dumped them in with the garlic.  Then I seasoned (salt and pepper) and browned the meat with the garlic and drained most of the fat.  Most.

I dumped the small can of tomato paste in the pot with a can of water and stirred and let it simmer for a couple minutes.  After that I dumped a cup of merlot in and let that simmer a few minutes.  Then I started adding cans of sauce.  After four I was a little concerned, but five fit. brother-in-law told me to cut the acidity of the tomato sauce with sugar.  He suggested 1 TBS/12 ounces of sauce.  I thought that was going to be awfully sweet, so I sort of compromised and put in two tablespoons of sugar per 29 ounce can.  His way would have been 12 tablespoons.  My way was 10.  Honestly...I'd probably cut that to 8 next time through.  But maybe not.

Okay...the spices.  Things get very sketchy here.  UNLIKE Leslie, I bought fresh herbs.  I just thought it made more sense.  I rinsed and dried then chopped up the herbs (basil and oregano primarily).  I can't tell you how much I used.  BUT...I can tell you the next time I do it, I'll just use dried.  Why?  Because, at least according to the recommendations on the fresh need three times as many fresh as dried, so when I was tweaking and fine tuning later...I needed soooooo much just to make any noticeable difference.  At the end I started rooting through the lazy susan looking for dried spices to add.  I added a couple shakes of crushed red peppers to spice it up a bit.

I made the meatballs in a big bowl and added them at this point.  
Here is a picture of my balls.

Oh...that brings me to the onion powder/flakes...As I was cooking, I was looking through the suggestions or maybe it was a message, I can't remember, and someone told me to use onion powder instead of sauteing the onions.  I had already decided that a "chunkless" sauce couldn't have onions, but I'd sorta forgotten about getting that taste in there.  So I added the onion powder then.  Also, the onion powder that I added did a really nice job of cutting some of the sweetness that was bothering me after I added the sugar.

My mother in law had suggested adding parmesan cheese, just a little, to the mix in order to keep the sauce from sticking to the sides of the pot.  I have no idea what merit this has scientifically...but I added it.  And it didn't stick.

Lots of the suggestions said that the longer I simmered, the better the sauce would turn out.  I started the process late, but I knew that Leslie's sauce simmered almost all day, so I finally pulled it off the burner around 9:30 or 10 that night.

Then I put it in containers...2/3 of it in the freezer, and the rest in the fridge for dinner on Tuesday.

And then Tuesday arrived...and I invited my in-laws to have dinner with the kids and I.

Emma skipped dance because she had a lot of catching up to do in Science.  There's more to this story, and it touches on how she's handling her grief at school, and I may talk about it at some point, but I think Science class has been receiving the lion's share of Emma's time contemplating her mom.  And I think that it's because it's a lot of talking about stuff that sometimes is dry and it puts her in a place where she daydreams.  And it's really hard to fault her for it.  But...we had a talk.

Anyway, that aside, I went upstairs to summon Emma for dinner and found her sitting on her bed, sad.

When I asked her what was wrong, the general impression I got was that it seemed "wrong" to eat mommy's spaghetti when mommy wasn't going to be there with us.  I too felt weirdly conflicted about this spaghetti sauce.  On the one hand, I was really trying to make it taste good.  You's cooking...that's what you want.  On the other hand, I was keenly aware of the possibility that it might be "better".  And that somehow liking the sauce better meant, or felt like it meant...supplanting Leslie's sauce and that felt disrespectful.  And it was a weird, like, "Okay, who needs Leslie now! Our sauce is better!"

Really the stated goal at the outset was "make mommy's" sauce, right?  But somewhere along the way I'd stopped trying to create what Leslie had created and started trying to "improve" on what Leslie had made.  I had:

  • added crushed red peppers
  • added fresh herbs instead of dried
  • used more wine than I thought she'd used
  • sauteed the garlic and sausage instead of dumping them in

It wasn't anything major...but they were definitely things that I thought would "make it better" versus make it the same.  Which is a weird way of sort of acknowledging that I got sidetracked along the way.  Somewhere along the line I stopped trying to make Leslie's sauce and started making "our" sauce.

Back to Emma.  She was near tears and we talked.  I asked her if this meant she was never eating spaghetti sauce again because her mom made it, because her mom had made a lot of things and if she was going to stop eating all of them it was really going to limit her diet.  She laughed.  I told her that if it had even been something we'd have thought about, mommy would have written down the recipe so we'd have it, but that it wasn't something we'd even thought about.  And then I told her what I blogged about...that every mom has their own sauce that they make, and that every kid likes his mom's sauce best.  And then I told her that mommy's sauce wasn't my favorite.  I told her that mommy had never really made it for me.  She'd made it for us.  I told her that it wasn't even her favorite, though she really liked it.  It was something she made that we could both enjoy, and it was something the whole family would eat.  And then I told her that maybe what we needed to do was not try to take mommy's sauce and make it ourselves, but to make "our" own sauce in the same way that mommy had first learned to make "our" sauce before we were married.  Then we wouldn't feel like we were replacing mommy's sauce...or by extension...mommy.

In the end there was this feeling of sort of..."I meant to do that" with regard to the fact that the sauce I'd made didn't taste exactly like Leslie's.  In the end there was a feeling that we can never replace or recreate Leslie's sauce just like we can never replace Leslie, and so let's not even try.  Let's just instead make "our" sauce. 

It was spicier.  It may have been a tad sweeter.  It may have been a bit bolder.  It wasn't Leslie's, but was perhaps reminiscent of it.  It was good.  Emma agreed.  Lily voiced her opinion non-verbally with a mostly empty bowl (but very full to begin with...).  I liked it.  My in-laws liked it. 

Our sauce then.  Leslie's can't be replaced.

Sure...I meant to do that.


Ingredients for Our Sauce:
5 - 29 oz cans Contadina Tomato Sauce
1 - 6 oz can Contadina tomato paste (plus one of water)
1 - head of garlic
3 - TBS olive oil
1 lb - mild italian sausage links
8 - 10 TBS sugar (I thought the sauce tasted sweet early on, but by the time it had simmered 4 hours and I'd added more onion powder, it was less so.  The end result was good, but I'd probably still cut it a bit)
onion powder
(spices to taste.  what i'd have done if I had all dried was essentially just cover the entire top of the sauce with spices and stir it in...check...adjust...stir...check...etc)
1 - cup red wine (Merlot used, but I'd probably have used Chianti if I'd have had one open)
1/3 cup parmesan cheese.

Ingredients/recipe for Leslie's meatballs
1 lb hamburger meat (if it was up to me, I'd probably mix pork/veal/hamburger)
1 cup italian spiced bread crumbs
4 - cloves garlic
1 - egg

(Leslie's recipe actually says salt and pepper to taste, which made me laugh, because it implied if the raw meat wasn't salty enough I should add do you find that out unless you eat the raw meat?)
onion flakes

Squish together until well-mixed.  Form into 1" diameter balls.  Dump into the pot raw and cook in the sauce.

(I told Emma that when I do it again I might use two eggs.  I was afraid the meatballs wouldn't hold together with just the one.  They seemed too dry.  And over the course of the cooking, I think a few of them did sort of disintegrate into the sauce, which might have made the sauce better, but depleted the ranks of the meatballs)

Tuesday, May 26, 2015

Home Sweet Home

When last we left our happy couple, they were basking in their new "affianced" status in front of a warm fire in a cozy Maine Bed and Breakfast in February.  The rest of that vacation was just as nice as it began (if somewhat less splashy).  We ate Lobster, played pool in a Microbrew pub (Federal Jack's in Portland), and ate what we would later refer to as "the best meal we'd ever had" at The White Barn Inn.  It was a great vacation and we swore we'd return again, an old married couple.  But we didn't make it back.

We returned to our carriage house and started planning the wedding.  We tentatively picked a date 18 months from our engagement because Leslie wanted to have enough time to organize it all, which, at the time seemed a ridiculously long time in which to plan a wedding, but in hindsight was probably just barely enough.

I tried cakes, I looked at invitations, I reviewed flower arrangements and visited tuxedo shops.  I requested quotes from reception halls and sampled food and visited photographers.  Leslie bragged about how involved I was in the planning.  I think she enjoyed that I wanted a say in how the wedding looked and where it was and what ceremonies would be observed, and which would be discarded. 

At least she enjoyed it at FIRST.  I can't tell you what she told her friends six months in, but I do know that there were..."several" heated exchanges involving cutlery or china patterns or knife sets when it was time for the wedding registry, and perhaps "involved" became her code for "pain in the ass".

Behind the scenes, our landlord was learning that he had ALS.  He came to visit us in the cottage house and told us.  I feel like I've written about this before but I searched the blog and couldn't find it.  He told us he had been taking a can of paint to cover the fence in the front yard and as he walked across the lawn he'd dropped it.  He picked it up and continued to the fence and dropped it again.  He couldn't make his hand close around the handle and stay there.  He talked to his doctor about it.  His doctor started running tests.  He was diagnosed.

He and his wife had two homes.  They both traveled a lot.  He told us he intended to sell the house and move to Charleston to their home there.  Not certain how it would affect us, Leslie and I started going to open houses and looking at the "For Sale" signs on homes we'd pass.  We had long talked about the wisdom of no longer paying someone else for a home, but to pay a mortgage.  We just hadn't really needed to look in earnest.

I had very specific ideas about what I wanted in a home.  So did Leslie.  Much like the wedding we were planning...I was become "involved".  We payed lip service to looking for a house but really we were mostly planning a wedding.  So in our off time we'd go look at Open Houses.  We didn't have a realtor showing us around yet. And my "involvement" in the home buying process rendered a lot of our options uninteresting.

The landlord's house sold, but the new owner was happy to have tenants paying rent in the cottage house and graciously let us stay.  We started looking in earnest shortly thereafter.

The new owner was newly wealthy.  A plane crash had claimed the life of his first wife, and with the payout that USAirways had provided, he had bought himself a beer distributorship, and a younger wife with much...much larger boobs. 

Okay sidebar...that is what Leslie and I talked about between each other.  I write about it now with fresh perspective.  I remember filing this information away in my memory banks, but it is only now, Leslie gone just seven weeks from my life, that I'm writing this story and that data now seems "important".  Holy shit...this guy lost his wife...I lost MY wife...I don't even know what to say about it.  The guy was still an immense fuckup, but I'm aware that I'm writing about a guy who got millions from the death of his wife, just after my wife has died...end sidebar.

Within a few weeks of moving in the house was trashed.  The pool we shared became kennel to their three boxers.  The dogs would run around the perimeter barking at all hours of the night and...well...shitting everywhere.  The driveway became a parking lot for the Camaro and new Jeep and new pickup that the new money purchased...each kid (there were three) got his/her own new car plus the his/hers vehicles and free parking for friends (there were typically six cars in the driveway).  They hired one of their son's school friends (he'd recently been fired from Pool City, so he had "experience") to clean the pool, but he didn't know what he was doing and ended up turning it black when he upended the pool cover and dumped about 1,000 pounds of dead decaying leaves into the pool. 

On the evening of his daughter's 14th birthday party (they cleaned the dogshit out of the pool area and completely emptied and cleaned out the pool) Leslie and I stopped over to talk to the happy couple.  We had a beer as we watched underage kids carrying solo cups meandering through the house.  We left within about a half hour to go back home and talk shit about them.  Because...OH MY GOD!!

We fell asleep very late.  Sound carried very easily across the pool over to our carriage house windows (no AC meant summertime the window was always open).  And the party lasted well into the night.  The following morning I carried the garbage up the driveway past the row of cars.  The brand new Jeep's windshield was caved in.  Three huge dents ran across the top of the hood and roof.

We must have slept VERY soundly, because:

Mr. Landlord (who had a drinking problem...I know...perfect business model for an alcoholic:  beer distributorship) decided to go get another keg from his business at 2 in the morning.  So he went to get the keys from the hook only to find Mrs. Landlord had hidden them because he was drunk.  He chased her around the house WITH.  AN.  AX.  Until she parted with them and he drove to the business, stopping only to crash into the brick column that flanked the driveway where it met the street.  Upon returning, he had flown into a rage (apparently a second rage) and threatened to kill Mrs. Landlord whereupon she locked herself in her room and called the police as he took the empty keg outside and proceeded to smash the windshield of his good wife's Jeep before doing some body work on the hood and roof. 

The police arrived, sirens and all, arrested him (he resisted, because obviously) and was thrown into a cell.  MRS. Landlord then went ballistic on the police because Mr. Landlord didn't have his medication, and he could DIE!!! without it.

All of this while we slept.

That day we contacted a realtor and began looking in earnest.

More later...

Monday, May 18, 2015

Sleep Walking

Friday night was Emma's chorus concert.  I took Lily and we watched the 7th and 8th graders sing.  Lily was really good throughout.

The walk was Saturday.  It was...well-attended.  Over 80 walkers signed up.  I'm not sure all of them made it (I know a couple didn't), but most did.  The weather looked gloomy and threatened rain, but turned warm and muggy instead.  I drove down early with Emma and a couple of her friends so that I'd be there for shirtless team members.

That sounds bad...

ABOARD is not ABOARD!  It's Aboard's Autism Connection of PA
I was afraid people would get lost, so I sent this out.  "The Beach is that way!"


Lily arrived with my parents and was VERY excited for the walk. 

I have two pics that both ALMOST capture the whole team.  I posted the other one on Facebook.
I just checked the website this morning and it says we raised $4,626 for (Aboard's) Autism Connection of PA.  I suspect when the final tally comes in it will top $5,000.  Amazing.  Leslie would be so excited. 

I talked to Emma that night.  She said she had a rough day.  I didn't notice it.  I was so busy caught up in the organization of it all, handing out shirts and handshakes, that I didn't see if she was visibly upset.  But she told me that she'd been sad.  She said, "Mommy really loved the Walk and it was hard doing it without her there."  And I almost said, "But she was honey, in our hearts," but I know that's not what she meant, and I know it wouldn't have made her feel better, and maybe would have made her feel worse, so I just squeezed her and told her that when I'd seen her she'd looked good and that I was sorry for not noticing and how proud mommy would have been at her and Lily and at all the money we raised for the charity, and if it didn't cheer her, at least it got her thinking about something more positive.

I hosted guests for much of the rest of the weekend, close friends who hadn't yet said goodbye to Leslie or seen the kids and me yet.  There were some tears, for sure.  Emma seemed a bit out of it, but assured me she was fine. 

That night I dreamed of Leslie.  It was the first time I'd dreamed of her since she passed.  I have been sort of living in fear of dreams.  You know how sometimes you have one of those dreams where you're really really angry with your spouse because they did something completely meaningless that only happens in the dog or something.  Anyway, the emotion is so strong and the feeling so real that you wake and you're still pissed.  Or, maybe it's the other way, that you dream something so great that when you wake up you're really sad to learn that the dream wasn't reality.

Ever since her death I've been dreading having dreams about Leslie where she's still alive, and the dream being so real and convincing that I'll wake up and get gut punched by the reality of her passing. 

It was a really short dream.  I forget all my dreams now, as if I never had them in the first place.  I don't remember when that started, maybe in my thirties.  When I woke, I knew I'd forget, and I thought about writing it down but didn't (it was like 4:30 in the morning).  Leslie was alive.  She was healthy and looked beautiful.  Her hair was long and thick like it was before chemo.  Sidebar:  She used to complain about her beautiful hair all the time.  It was too thick.  It took too long to get ready.  It was too hot.  You never see hairstyles for women with really thick hair.  And on and on.  But she knew she had great hair.  She was younger...maybe 35.  She was happy and smiling and we talked a little about nothing (that's why I decided not to try to write it down).  Like she was really alive.  Just a married couple chatting about nothing.  It was beautiful and fleeting. 

I woke up happy, which surprised me.  I think maybe even in the dream I realized it was only a dream.  So I woke happy, like I'd had a chance to tap into a particularly rich and vivid viewing of Leslie and see her smile again and hear her laugh again.  Like somehow this new experience with Leslie was almost like having her back alive again.  New words, new smiles, new laughs.  And then I got sad because as the dream started to fade away a bit the reality started to seep back in.  I went back to sleep but didn't dream about her again.

It wasn't as bad as I thought it would be.  It was even sort of...nice.  I'm not afraid to dream about Leslie anymore. 

Tuesday, May 12, 2015

What is Lily Feeling?

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

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

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

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

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

On Lily...

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

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

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

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

This is the picture.  Lauren and Leslie do look a lot alike.  But it was still
kind of heartbreaking given the circumstances.  (I don't really have permission
to post this, but I'm facebook friends with all these guys, so I'm sure they'll tell me
if they're pissed I posted it.)
Meanwhile, at school, Lily WAS mentioning her mother.  A week before the IEP, one of Lily's teachers reached out to me.  She wanted to give me a heads-up about something that Lily had said at school.  She had read the blog post about Lily saying her final goodbye to her mother (last week's "One to make you cry") and wanted to share that after class one day Lily was walking out the door and said, "She didn't say anything."

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

"Mommy didn't say anything."

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

"Mommy didn't say goodbye."

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

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



"Good, Lily.  Bless...."










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

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

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

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

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

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

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

Wednesday, May 6, 2015


In the proposal post I lamented the fact that the only picture I could find of Leslie and me in Maine was one that some passer-by had take of us on the rocky coast line.  I found only one other picture and it was of a lighthouse.

Later that day, a friend of mine from Wisconsin emailed me and said...Isn't that picture on the shore of Lake Michigan from when you came to visit us?  I was like...SONOFA!!!

I remember thinking, how could I possibly not have ANY of those pictures?  The only picture I DID have was a damned picture of Lake Michigan.  (Not in Maine for those of you who are geographically challenged).

Last night I promised Leslie's mother that I would look into how to log into my home computer as a guest (Windows 8 makes you login.  It's stupid).  I couldn't remember how I set it up, so I told her I was going to have to run through it so I could explain it.  She wanted to be able to log in and see Lauren's (Leslie's younger sister) commencement.

I was in the process of setting it up when Emma came to stand beside me.  We were chatting about her homework when she picked a box of pictures up from the desk near my elbow and asked me what it was.

"Pictures," I said, dismissively.

"This says 'Maine'," she replied.

"What?  Let me see that!"  I grabbed for the box, and she handed it to me and backed away as if from a serpent.  I rolled my eyes at her.

When I started writing these posts I'd gotten the Maine pictures out and put them on the desk.  I knew I'd be writing about the proposal.  I got all organized.  That was my mistake.  By getting organized I hosed myself.  I looked absolutely everywhere in the house I could think of for those damned pictures...except on the desk where I write blog posts.  Because what the fuck would it be doing THERE?

Short term memory loss is a bear, folks.

Returning to the story soon...

Friday, May 1, 2015

One to Make You Cry

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

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

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

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


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

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

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

Still...back pocket.

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

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

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

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

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

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

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

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

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

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

It was a great day.  So many friends came to visit.  We Skyped some friends in Canada.  Lily visited with Emma and when they left, I prompted Lily to say good bye to her mother, and Lily instead said, "I love you mommy," so clearly that Leslie's already labored breathing caught in her throat and she began to cry.  And then the girls were gone, and the friends filed out, and Leslie, whose eyelids were drooping and who was startling herself awake repeatedly at last fell asleep at our (her sister and I) urging.  I kissed her goodnight and goodbye and went home to be with the girls.  Her younger sister and her husband spent the night in the room with her. 
At the end, Leslie didn't want her picture taken.  She'd lost 50 pounds, she hated seeing herself.
This is probably the last picture taken of Leslie while she lived.  Emma, holding her hand, and taking
a picture of her hand...because taking a picture of her hand was allowed.

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

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

We sat on her bed with her and held her hand and told her how much we loved her and how much she meant to us and how unfair it all was and how much we'd miss her, but that we would be okay.  That she could let go if she needed to.  We told her that she was a, a have fought so bravely for so long.  And Emma held her hand and I held another, and we smoothed the hair back from her face and kissed her forehead breathing desperately, "I love you so much" into her ears, praying that she could hear us, while her breathing came in quick shallow lurches.  And then...she passed.  She was there and then she was not, and at first I wasn't certain...I felt for her pulse and there was nothing there and I kissed her and told her again how much I loved her and said goodbye and told Emma to do the same.  And then I told Emma that her mommy was gone.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

getting one of Lily's famous open mouthed smooches

veil plus Lily plus open flame...

pretend it's a mcnugget

love this picture
Love this picture more though...