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Monday, September 11, 2017


***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 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 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 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.

Tuesday, August 22, 2017

A Touch of Lace

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

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

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

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

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

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

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

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

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

Thursday, August 10, 2017

Conversational English

I was telling my friend Bec that "I'm well" in response to her question asking me how I was doing the other day. I told her that's my new default instead of "good thanks", and told her this story.

My boss's boss's boss is named John. That's not super relevant to the story but I figured John would be easier to type than "my boss's boss's boss". Anyway, John has the corner office on our floor and he's super nice and outgoing and every time he sees me he says, "Hey, Jim, how are you doing?"

And I say, "I'm good thanks, how are you?"

And without fail he says, "I'm doing really well, thanks." And I immediately sonofabitch...did you just fucking subtly correct my grammar??

So I'm like...god dammit...this is my boss's boss's boss. I will be damned if I'm going to allow this shit.

I'm doing well...I'm doing well...I'm doing well...I practice it in my head. It's so informal and "Montana" to say "I'm good, thanks". It's ingrained.

I'm doing well...I'm doing well...I'm doing well...

So the next time I see that son of a bitch I'm all prepped and ready.

And he says, "Hi Jim, how are you doing today?"

And I reply..."Good, thanks, how are you?" ( GOD DAMMIT )

More practice...

The NEXT next time I see him I'm fucking ready. He says, "Hi Jim, everything going alright?"

What. The. Fuck. He flipped the script. Well...i have no response to THIS. we didn't prep for THIS. Who can answer something like that off the cuff?

"Doing good thanks" (FUCK!)

The NEXT next next time I landed it, but stammered a bit, (.5 deduct)...

I used his own words back at him. "I'm doing really well, thanks," but it tripped over my tongue. Wasn't "natural".

And I realized that for some reason I OFTEN say, "I'm well" to people. But...for some OTHER reason...never in response to John. when people ask me how I'm's "I'm well". And I'll keep fucking saying it until it's so ingrained in my head that when that friendly sonofabitch asks me it'll flow as smooth as McDonald's soft-serve ice cream..."I'm well, John, how are you?" I'll say. See how he likes THAT!

Meanwhile...he has no idea that I'm hostile about what is probably not a subtle grammar correction, but just the same thing he says to everyone.


So today, he sees me in the hall, and basically now I have a brain block around John. I start breaking out in a cold sweat whenever I see him. I've got the conversational yips. So I see him walking toward me and he says, "What's the word?"

And I froze like a deer in the headlights...because­ who the fuck EVER knows how to answer that question, and also...because I was still all "I'm well, thank you, how are you?" like I'm just learning to speak English and think everything anyone says is "how are you". Couldn't get my high powered brain to just go on autopilot the way it's supposed to with conversational niceties.

So instead, I just totally ignored his comment and gave him mine "I'm well, thank you, how are you" and then he said, "Doing okay, how about you?"

"Good thanks"