Tag Archives: Death

Stories and More: A Daughter’s Encyclopedia of Her Dad

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There are so many ways to tell a story.  We just had an intimate celebration of my Dad’s life for those who knew him.  It started with cocktail hour and then it was story time.   I heard so many stories about my Dad that I had never heard. I loved hearing about his life as a boss, a friend, brother-in-law, Bumpa and of course as a father.  In the words of Eben Alexander in his book, Proof of Heaven he writes, “A story–a true story–can heal as much as medicine can.”

So how was I going to talk about Dad in 10 minutes or less and really give a sense of who he was to me?  I was thinking about the text, “Days With My Father” which started on line and is now a book, but that did not exactly capture what I was hoping to do as it only reflected the end of his father’s life.  I wanted more than that.  And then I thought back to the last time I wrote about my Dad, using Wallace Steven’s, “13 Ways of Looking at a Blackbird”.   I wrote up 13 Moments with Dad and took it to the service.

ImageI only got through maybe half of them, but then as I went back to the piece I didn’t like it.  I envisioned something different and then I remembered the book, The Encyclopedia of an Ordinary Life.  If you have not read this book then it must go on your list to be read.  I scoured my shelves and re-worked the piece again.  I am thrilled with the possibilities and so I will share a few of them and they are rough. There are so many that have yet to be written, but this is where I am now and I am still struggling with each subtitle as well as how many to write.   Yet another piece of writing that is never done, but is just done enough for now to make my point here on this blog, that writing and thinking takes time and that honoring where our students are in that moment is priceless.

And again, while I realize this is a very personal piece on an educational blog and even somewhat self-indulgent, I have come to realize that living a literate life is very personal and that we need more of these personal connections to allow us to see each other, face to face.

So here we go…

A Daughter’s Encyclopedia of Her Dad

A for Always

“You need to leave the hospital right now, ”Dad’s voice echoed, quiet yet firm.   After 13 days of never leaving my leukemia-ridden 3 and a half year old Emma’s side, she was overdosed in one of her surgeries. My Dad was the first to arrive and he was the only one who told me to leave.  And so for the first time I left.  Dad drove me home to see Zachary and spend one night out of the hospital.

What I have come to realize after his death is that no matter what Dad had my back.  I just knew that if I ever needed anything he would have been there and just knowing that keeps you from ever really needing anything at all…

“This too shall pass”, my Dad’s words of wisdom he shared with me when in the throes of Emma’s illness.   And eventually it did.

B for Best Friend

My best friend, Krissy stopped by to say goodbye on her way to her new prep school hours away, Northfield, Mount Hermon.  As we stood in the driveway sobbing together and lamenting our impending separation she said, “Why don’t you come too?”

And so I went and checked out the school, knowing that we did not have the money for me to go to private school, but interested to see where Dad had also gone when he was younger.  (That was a story we all knew too well.  How he hitchhiked there 3 times and begged them to accept him and yes, they finally did.  “It changed my life,” he would say. )  Did I need my life to be changed?

He walked into my bedroom, pitch black and through the darkness he just said,  “If you really want to go to Northfield, we will figure out a way to make it to happen.”  And then he left the room.

I did not go.  I didn’t need to go.  I think I just needed to know I could go.

C for Call

I picked up the phone to hear Dad’s voice. “I haven’t seen you in a while.”  And I would tell Dad what I had been up to and he would listen and respond.  One day I was telling him the latest woes of parenting and he stopped me and said, “You have raised great kids.”  Again I was left silent.  The man of few words was speaking… and he was saying something from the heart.  “No, I mean it.  They are great kids.  You have done a really good job with them.”

What he could not see were the tears running down my cheeks as I flipped the bacon and then Mom got on the phone.  Per usual at that point he would make his exit and say with sarcastic contempt, “Well I will let you two talk for the next few hours” and he hung up.

And what he needs to know is that he too has raised 3 really great kids.

D for Dancing

I made my Dad do a Father Daughter dance at my wedding.  My mother had often lamented at the lack of dancing and nights out on the town with my father.  He resisted the idea of that dance, but just like one day when I came home from college and hugged my parents and forced my Dad to hug me back, I forced him to do that dance with me.  Not only did he dance, but he even did it with a smile.

But you must know that dancing with my Dad was more like standing in the middle of a floor where there was music playing and making slight shuffles to the right and to the left.  Rhythm was not really involved, but even standing there as he held me in dance position, right arm up left on my waist was enough.  And Mom, I don’t think you missed much not making those nights out dancing with Dad!

E for Employee

As a new summer employee at my Dad’s newspaper, The New Hampshire Business Review, I was excited to finally be a bigger part of the family business.  I envisioned learning the ropes of journalism and seeing what made a company tick.  I was assigned to work for my sister under the term “data entry”.  Day after day of entering information and categorizing it.  God forbid I actually ask a question of my beloved “boss” as she would look at me in disgust and say, “I already told you how to do that!!”  Never before had I felt like such a peon in a job.  Even waitressing was easier than trying to fit into this very tight system that had been established so many years ago where I quickly realized that being a family member only meant there were higher expectations of you and no family bennies whatsoever.  In fact, it began to seem like being family was more of a curse than a blessing…at least at the office!

One day while I was sitting in my Dad’s big black chair and spinning around like I used to when I was little I opened his top drawer to find a pen and instead I found a one and a half inch stack of checks.  My gut sank as I looked to see that the check on top was made out to Don Madden.  As I flipped through them all the same name appeared over and over and over again.  A flipbook of Don Madden checks and the implications that he was paying everyone else made me gasp.  His investment in this business ran deeper than I had ever realized.

I finished that summer and never complained again.  It was my last time working at the paper.

F for Faces

Hey, do you see the face?”  Dad would ask as he pointed at a picture, a painting or even out the window at a tree.  Whereupon we would all look and sometimes we might see it and others we would have no idea what he was seeing.  He “saw” things that others did not see be it in the visual, looking out the window or into the future political arena.

Since my Dad’s death I have started to “see” faces everywhere!!  I am taking an intense course to become a yoga teacher and in that course we are studying anatomy and all through the lessons I see faces.  Faces on ovaries, kidneys with eyes staring at me and then the profile of a young man peering out of the liver.  Every time I see one I say hello to my Dad and am forever reminded that we must look, look and then look again with an open mind and you never know just what you might “see”.

H for  Hugging

Hugging.  From that day forward every time I saw my Dad I hugged him.  Over time he came to expect it and dare I even say that he might have even leaned in first once or twice himself!  He was an interesting hugger, more of a leaner really, but still I didn’t care.  Some say huggers are buggers, but eventually they give in and realize that hugging isn’t so bad after all.

I for Indulgence

“Daddy, will you PLEASE do your Donald Duck voice?” we would plead for hours on end and usually the answer was no.  To this day is amazes me how few times we actually heard it and it was something that tickled us pinker than pink as we would laugh and laugh.  What was it that kept him from wanting to do it more?  To indulge his kids just a few more times and yet if you think back, it made it all that much more incredible when he did it.  “Less is more,” he would say if he was helping me with my writing.  “Less is more”

L for  Late

Driving home after curfew one night in the yellow bumblebee I devised a plan to pick up some speed down Page Road and then cut the engine and drift into the driveway with the lights off in hopes that I could “sneak” in and not be discovered.  As I turned in, the car slowly moved towards the barn, activating the sensor bathing  me in bright light.  Damn, I thought as I began to open the car door and realized there was movement all around.  As I looked closer I realized I had coasted into a sea of raccoons.  Big raccoons, little raccoons, raccoons swarming the car and coming towards me.  I slammed the door and began to scream, “Dad!!”  “Dad!!”  Of course he couldn’t hear me and so I layed on the horn.  Eventually Dad appeared in his boxers and shooshed all the raccoons away, saying, “Get outta here ya saps!”  As he was getting rid of them I made a dash for the house.  He followed me in and said, “You’re late.”

M for Moving

“I am calling to check in with you because we looked at a house in New London and well, I just wanted to be sure that you were okay with that.”  I paused in disbelief.  Was my Dad actually calling to ask me about their life decision?  The silence lingered and he said, “Are you there?”  “Yes Dad, I am here.”  “Well, you and your mother spend so much time together and well, I just wanted to know what you thought about us making this move.”

“Do what you need to do Dad, and I will be fine.”  And as I hung up the phone it occurred to me that our relationship had shifted so dramatically over the years but that I hadn’t even realized it.  The older he got the more he said and the more he said the more I listened.  I am so glad they lived nearby for 10 years.

S for Swearing

Dad announced as we sat on the lime green carpet during a major heat wave in 1975 that we were going on a family vacation.  Lisa, Jamie and I screamed and shouted with joy as visions of Disney rides and beaches and pools danced through our heads he said we needed to pack as we would be leaving at 4 in the morning just to get a good head start.

We woke at 4 filled with Christmas morning anticipation and settled ourselves into the blue paneled station wagon.  Lisa and I settled into our makeshift bed in the very back complete with blankets and pillows and Jamie in his own bed in the middle seat with the cooler.  Little did we know that we would never get out of the car except for the occasional bathroom break and over 14 days and 4,000 miles later having seen all of Newfoundland and even Labrador.  Oh the stories from that trip!

It was the first time I ever heard Dad swear as he got back into the car at a random gas station as Mom was handing us snowballs and candy bars to keep us quiet and we were fighting over them and anything else from being in such a confined space for too long when Dad snapped and yelled, “All you kids do is fight, fart and swear!”  I remember thinking…did Dad just say fart?

T for Tomasen

My name.  Thank you Dad for making up the most incredible, bestest, most awesome name in the world just for me.  Something about having my name always made me feel like I was different.  (It also helped that Lisa was actually a tiny bit jealous of it too as I was jealous of most everything she had, especially that incredible cassette recorder she had in Weare, but I digress!)  What I love most about my name are all of the stories it has generated.  As a man of stories, and as a great storyteller I would imagine you might have thought, what kind of name would bring great stories?

 W for Wondering

“I would like to come over, there seems to be something wrong with my computer.”  He would arrive, laptop under his arm, and I would pour the coffee as he would begin to describe in detail just what was or was not happening with his laptop.  We would sit together and I would map out the steps, write them down and he would thank me profusely for being so patient with him.  “We always knew you would be a teacher,” he said.  “The hours you would spend in your room with all of those imaginary students, we just knew you would be a teacher.

During one of those visits he told me that he was ok with dying.  He talked and talked and told me that I was  the “listener”.  I didn’t know what to do with that information today as I wonder…years later…if he would have said the same thing on the day he died.

So, as you can see there are many pieces missing, many in process, and just a sampling of an attempt to remember the stories of my Dad.

ImageJeff Wilhelm in his book on narratives tells a story about a decision-making process one of his kids was making and asked this question, “Which decision will make the best stories?”

My Dad’s life in stories was what he would have hoped for.  Of that I am sure.  What I am not sure about is how many stories are still out there, untold, about my Dad and about all of those students we work with.

We are only as good as our stories and honoring those should be a part of our daily work with students, whether reading them, writing them and absolutely always celebrating them. Period.  I mean, in the end, what else is there really?

Learning as a Deeply Personal Experience: On Teaching Readers and Writers

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The buzz of Mentor Texts has been around for quite a while now and while I like this idea, what I don’t like is that our young writers are often instructed to use a particular mentor text for a given time as assignments.  Using a particular structure to do this, instead of exposing them to a variety of ideas and texts and then helping and guiding our students to figure out what would work best for them, the writers.

What would happen if we asked our young writers to first think about what it was they wanted to say, to write about, to read about, to discover and then come up with the best way to express this?

When my daughter was first diagnosed with leukemia I kept a journal and wrote down every single little detail of our experience.  It was exhausting to get onto those pages all that I felt I needed to.  Her every reaction to every drug, the times she received the doses, the different emotions experienced, missing my 8 month old at home.   I quickly fell behind and was angry that I was missing so much of what I thought I needed to get down, in the name of control.

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Book of Poetry by Dan Rothermel

 And then one day someone brought me this small book called, Sweet Dreams, Robyn written by Dan Rothermel.  It is a collection of poems he wrote about his daughter with cancer.  This book transformed my writing life.  Suddenly, I had the permission and allowed myself to write in poetry finding it easier to get down all that I wanted to without getting muddled in all of the pros it took.  In the words of my Dad, “less is more” in writing.

With the death of my father I had this same experience as I was meandering through the blog world I found a blog that just spoke to me.  She writes a fictional piece about the death of her mother and says,

“It came together when I was working on a blog post about Wallace Stevens one of my favorite poets. His “13 Ways of Looking at a Blackbird” was on my mind while I was reading Paul Harding’s Tinkers.”

Her mentor  Wallace Stevens gave her what she needed to capture what she wanted to write in fiction and I instantly knew that this too would be the perfect way for me to capture and process my father dying.  Snippets of strong images that I needed to get down on paper and so her blog became my mentor text.  It was more than perfect.

You can find her blog at  http://deborahbrasket.wordpress.com/

So here is my version, based on the ideas I stole from her that she stole from Wallace Stevens. 

13 Ways of Looking at Death Just Before, During and After

I

I called him on the phone, his voice weak and wavering as his hand fought to keep the phone still.   “Hey Dad, how are you feeling?”

“Bad.  This is Bad.  What I have is really bad.”  I cringe, as I know he knows it is bad.  Sepsis.  Blood infection on top of pneumonia not to mention his COPD, heart disease and diabetes…

He has never said it was bad before.  He always said,  “It is getting better.

It is bad.

 

II

His oxygen cord lies on the dirty floor as it takes her a moment to realize there are no lines crossing his face, lines of plastic jewelry tubes that have become as permanent as his glasses.  He is not getting any air.

And she wonders…just how long has he been without oxygen?

She calls the nurse and insists he gets a new one.  Nurse never responds to the absence of his air or how long he has been without it.

Idiots.

 

III 

She is alone with him, Red Sox images flashing in the dark room, sound blaring while she simultaneously plays Candy Crush.    He wakes, peers over and says, ”You are still here?  I really appreciate that.”

I smile. 

And we go on like that for hours.

The Sox won.

Won the AL East Title.  He is not aware.

She hoped it was a good sign.

She is always looking for signs.

 

IV

Today is a good day.  He is out of bed, sitting up in the hospital chair as she enters.  He starts talking, “You know I sat up all night trying to remember the kids names.”

She thinks it must be all of the grandkids that he is forgetting…he continues…

“I know I have 3 kids.  2 daughters and a son.”

“Yes that is right” she replies, as he looks up at her and says, “The first daughter is Lisa.” 

“Yes Dad, Lisa is your first daughter.”

“Then there is another one, you, what is your name?”

Her 10-year-old self emerges and screams inside, YOU named me Dad!! Don’t you remember?  I have the coolest name in the world because YOU made it up. 

That’s enough of this name game.

We gotta get him the hell out of this hospital.

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Me, My Dad and Lisa

 

V

My once virile father sits perched on the kitchen island pursing for air.  How did he get in the house so quickly?  My brother in law carried him in, like a baby in his arms, but he was amazed at just how heavy he really was, all  filled up with 9 days of hospital IV fluids so he had to stop to rest.

We still laugh at the absurdity of my Dad sitting with his feet swinging on the kitchen counter.  Who says you don’t go backwards?

He then carries him the next leg into the bed where he will remain until he dies.

 

VI

Each breath is a struggle and you can tell it actually hurts.  Never mind when he coughs.  He just wants to feel better, but he doesn’t really as he tries to negotiate in his head that he is now home and how he thought being home would make him feel better…but he doesn’t.  Now what?  You can see it coursing across his forehead like the GMA banner in Times Square.  Now what?  Now what?  Now what?

 

VII

Doctor came to the house.  Yes, in 2013 a Doctor actually came to meet the needs of his patient.   There is a God.  (See previous post on Systems)

Dad chose hospice.  Visions of nurses, social workers and support at our side danced her head as she wondered…does he really know what he is choosing?

She is sent up to the Local Colonial Pharmacy to get the “hospice kit”.  A box filled with drugs and lots of other things medical that you don’t want to know about never mind even think about using.

She is the chosen one to give her father his first dose of comfort packaged in a needless syringe to be administered orally.  Flashbacks of shoving chemo filled syringes disguised in chocolate pudding to her 3 and a half-year-old smack her in the face. 

Click…she re-enters that mode and just does what she has to do.  She has been here before and she just does it.  Nurse Ratched is back in the house. 

VIII

My brother arrives a few minutes after giving my Dad the morphine. 

The pill that he was begging for. 

The morphine that I was afraid of. 

The morphine that came without the nurses and the social workers and the volunteers to help us through this process.  

Where in the hell were those hospice people she had heard so many wonderful stories about? 

All they got was hospice in a box that had to be refrigerated.

 It was just My Mom and I with my Dad yelling at us, “Will you just give it to me for God’s sake, I don’t  care if it is the wrong dose.”

 He begged for relief as we became more and more agitated and unsteady in the moment, dropping syringes, reading and rereading the prescription and even calling the pharmacist. 

And finally I  just gave it to him as he gasped for air and I suddenly realized we too had been as negligent as the hospital.

His oxygen tank had run out.  No wonder he was desperate for something.  How many ways are there to torture a man?

And they left the room when her brother arrived. 

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Jamie and Dad

IX

Morphine overdose.  Her brother horrified that we left him alone with a his father who was fine and talking with him one minute and then was suddenly hallucinating and trying to get out of bed.  His strength mammoth as my mother got in bed behind him to restrain him.  He could not walk on those big boats of feet filled with fluid. 

I call the VNA.  I reach out for those hospice people who were supposed to be there and tell him we need help ASAP!!!!! 

He responds that giving morphine is an “art” and not that you gave him too much but that if he had been there he would have started with a lower dose.  After telling her this for the 4th time she wants to reach out and punch him through the phone…then why the HELL would you hand it over to an amateur?

He arrives at the house and starts talking about the “art” of dosing morphine again!!!  She sees red and runs from him to avoid physically clobbering him.

Next Time…I give him ¼ of the recommended dose. 

Thank you, Honorary Dr. Brother James. It says you can give it every 30 minutes.  One quarter of a dose lasted him 12 hours. 

Insanity.

 

X

He lays in bed and sleeps, or so it seems, soundly for days on end.

The question dancing through the house…”when will it happen?”

The family has their own form of hospice in a “Come to Jesus” kind of scene from a bad Lifetime Movie.  We all give him permission to go, hands on, tears flying.  Sister Lisa actually seems to be cheering him up to the pearly gates.  Everybody says their peace and then we all continue to sit with big red puffy eyes, exhausted and we wait.

He doesn’t go.

When will he go?

He doesn’t go.

From the background Cousin Anne tells us, “He isn’t going to go right now, it doesn’t happen like that.” And snaps us out of our delusions that we can will him to go in that moment.

XI

The sleepless nights wear on as brother and sister get up at different times to peek in to see my mother sleeping next to my yes, still breathing, father.

Exhaustion settles into the house and takes a seat on the couch alongside us.

Maybe he is not going anywhere.  Maybe he will live forever.

Meals are delivered.  They are all amazed at how they just show up and are so thankful because eating and food have not been on their radar.

Dad has not really eaten or had anything to drink for over 12 days.

Unless you count 4 little bird bites here and there.  I fed him his last scrambled egg from Lisa’s chickens a couple days ago.  No solid food since eating 5 bites of that egg.  No water.  Nothing.

How does the human body beat on?  Especially one we all thought was so fragile?

His Hands don’t even look like his anymore they are so filled up with fluid,  boxers hands.

Every moment stretches on as you wonder…when will his last breath be?  Who will be with him?  She wonders all of these things as she crawls into bed with him and rubs his back and quietly cries for her Daddy while the Red Sox blare on the radio from the bedside table next to us.  

“How can something so natural be so unnatural?”  son James wonders.

XII

She wakes at 8.  Walks downstairs past her sleeping brother and sees her mother making the bed around her father’s still body.   His breathing has changed.  It is short.  Very short.  She says, get the morphine.

I know I must give him him the rest of the syringe…the same dose I administered 5 days earlier…it was what he needed.  He was hardly breathing.

Mom is on his right.  She is on his left. 

He opens his eyes for the first time since the morphine began.  The biggest widest eyes you have ever seen and he looked over at my Mom and she said, “Look at those big beautiful brown eyes.  I love those eyes.  They have not been that open in years.  I wonder why none of you got those eyes?  I am the dominant one.”

“I always wished I had gotten those brown eyes I respond as his eyes then slowly trail to find me on the left.  He stares right at me for a moment and then it is as if he is looking to something beyond me.  He holds that gaze for what seems like forever before he moves his sights straight ahead and opens them even wider.  He was seeing the light.  He liked it.  He felt peaceful as he took one long deep breath and closed his eyes.

“Is that it?”  Mom and I looked at each other.  It seemed to be.  No pulse. 

And then out of nowhere one last little breath just to mess with us as we laughed. 

Dad died.

8:15 am on Sunday, September 29th, 2013.

It was beautiful.

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Dad and Mom taking flight on Chappy

 

XIII

She misses him.  They all miss him.  She is not sure what to do so she talks about him.  She remembers him.  She reads.  She writes about him.  She laughs at his Donald Duck impression stored away on her computer.  She shuffles through years of pictures and marvels at how great he looked for so long regardless of his health issues.  She thanks her Mom for keeping him so healthy for so long.  She misses him.  Every day.

He was a great man.

He had 9 lives. 

He lived every one of them fully.

He was her Dad.

 

 

I love this piece because for me it captures all that I want to remember and all that was there during this incredibly intense, scary, weird time.  I feel better after reading about others experiences and then writing my own.  

What would have happened had I been in a student in class and I was asked to write a recipe or a persuasive essay from one character in my assigned book to another when all I could think about was my Dad?  Do we consider the lives of our writers, where they are and what they have to say and what they are interested in reading about?

I would argue that right now we teach the writing and not the writers.  We teach the reading and not the readers.  We think about checking things off. Persuasive Essay, check, Informational Reading, check, Memoir, check, Close Reading, Check.

What would happen if we trusted and guided readers and writers to know, to figure out what it was they wanted to know more about, what they wanted to say and then focused on helping them discover the best way or ways to read about it and say it?  If we gave them the time to read others and think to themselves, “Hey, I could write something like that!”

Reading and Writing are my “go to’s” when I am trying to figure something out, process emotions, inform, wonder, preach, question, express, persuade, create, think, communicate, get lost and so many other things.  What if the goal of every reading and writing curriculum was to help our readers and writers see reading and writing as a “go to” and not just a series of assignments to be completed, but tools for life?

And while this all may seem incredibly personal for a blog on education, I believe I am finally finding my stride in that a real and true education is deeply personal. 

And I wonder…are we  afraid of this authenticity?  These truths? 

And even as I consider posting this, putting it out into the world, I question myself.  Do we want to hear or read these truths?  Why do I put it out there?  And while I know none of these answers I only know that I will…

 

Follow the link below to read my Dad’s obituary beautifully written by my sister, Lisa.

http://www.chadwickfuneralservice.com/fh/obituaries/obituary.cfm?o_id=2263261&fh_id=12966 

 

 

 

 

 

Systems Failures in Life and Death and Education

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I went to my son’s High School 4 years ago when he was a freshman because he was struggling.  I sat down with his guidance counselor and his assigned Vice Principal to find help, where we had a wonderful conversation and it was determined, in their words, that “the system” was failing my son and that there is nothing we can do here.  A cop out.

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My Dad died this Sunday, September 29th at 8:15 am with my mother and myself at his side.  It was an amazing experience really, but one that brings so many emotions to process.  We all, my sister, brother and my mother sat vigil at his bedside for 5 days. It was long and more emotionally intense than I can even write about.

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Systems.  What tried to needle it’s way into ruining his peaceful death at home was systems.  Systems failure, how ironic I think as the government shuts down today. (But that is another whole blog!)  Let me explain.

It began when we had to actually fight to get my Dad OUT of the hospital because he had been there for 9 days and was only getting worse.  It was suspected he was in renal failure from fighting pneumonia and a staph infection leaving him septic on top of a failing heart, diabetes,  and COPD,  but the “system’s” directive is to cure.  Dialysis was their next thought.  4 hours a day hooked up to a machine when all other systems were failing.  And by that I mean his systems.  Failing heart, failing lungs, failing kidneys.  But we are all so afraid of failings…

He was dying.  We could see it.  And so we, his wife and kids, took him out of the hospital against their recommendation.  They were not happy with us and therefore did nothing to help us.  We got him into the car and my brother in law carried him into the house.  No help.

The “goal” when we left was that my Dad would continue on antibiotics at home to continue to fight the infection coursing through his veins.  He had a pic line inserted and the VNA was going to meet us at the house the next day to “teach” us how to care for this line and administer the antibiotics.  We agreed to this as it was the only way to get him out, playing within the system to get what he wanted.

And in that time my father stopped eating, drinking and ultimately peeing.  The hospital called the next morning  to let us know the test results were back and that he was, indeed,  in acute renal failure and that it was their recommendation that we bring him BACK to the hospital as this was a critical and urgent situation.

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I  had to fight hard against the system to continue down the path that my father wanted, which was to be at home.  This nurse was more interested in protecting the interest of the hospital that the interest of the patient.  I told her outright we were not going to sue, but that my Dad just wanted to be at home.  She persisted and finally asked if we would like to speak with the Doctor.  I said absolutely.

And he called and he listened.  It was shocking.  Instead of spewing hospital policy and protocol at me he listened to how my Dad was getting worse day after day in the hospital bed, how he had fallen in the bathroom there and nobody had ever known, how each day brought him diminishing care and a dirty room, about how we were all sick with sore throats and the likes from sitting hours and hours in that room with him, about how miserable he was, about how he was suffering, struggling for each breath day after day in that damned hospital bed.  And he heard me.

He asked if we would consider bringing my Dad up to his office and I told him we could not even move him in bed never mind getting him out of the house and so I almost jokingly said,   “But you could come here….?”   And he replied,  “I am thinking about it.  How does 2 o’clock sound?”  WOW!!

It was amazing.  I asked for his help and guidance in having a conversation with my Dad about his options because it was not a conversation that we could have with him as wife, son and daughters.  And he told my Dad that he was like a car driving on 1 tire because 3 of his major systems were failing.  My Dad looked him straight in the eye and said,  “Thank you for being honest.”  He chose hospice.

IF the hospital had anything to do with it he would still be there, probably hooked up to a dialysis machine and still suffering.  Systems…in place to protect who?

Systems…in our schools, all supposedly designed to create amazing intellects, college and career ready, but they are systems that are failing so many.  Ahhh…you see I was going somewhere with this.

And this is my cross to bear.  Every time a “system” is put into place it negates the experience of one human or another.  Why is it that we think others can design systems that will best fit every person?

I shook this doctors hand (whose name I shall not mention)  and thanked him profusely for coming out to the house.  He represents what used to be and what can still be right and fair and human in health care.  He was a young guy and even eluded to the fact that he was not sure if he might get into some kind of trouble for doing what he did, (thus not mentioning his name)  but in the end as he stood there washing his hands at my mother’s kitchen sink, I remarked that THIS is what health care should be.  He told me that this was his mission in life; to keep the patient and the needs of the patient at the forefront, systems be damned!

But look how hard we had to dig, claw and fight our way to find this.  I shudder to think what might have happened had he not been on call that day!

My son is now a senior and is doing really well this semester.  In asking him why he simply said, “I have great teachers.”  It is not the systems, it is the people IN the systems that make a difference.  Period.

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Thank you Dad for giving me words and while I will never be the writer you were…I will continue to write and always think of you and I will also continue to fight, as you did for what is just.   Be peaceful.  You are missed.

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