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Wednesday, April 13, 2016

Just a Lil Walk V


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Monday, April 11, 2016

The Pocket-watch


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

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

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

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

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

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

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

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

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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

Friday, April 1, 2016

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.