Four year old Layne

4 year old Layne came over with her moms the other night

when Layne went to the bathroom
she came out
asking about our sea shells
and sea glass
that we keep in bowls by the sink
she wanted to know where they all came from

Christine told her that I was a writer
but my hands didn't work
she told her mom that Uncle Marky Moose
could tell her the stories
and she would hand write them for him

she told me that she loved me

Sunrise

Friday morning

another sleepless night

I wake up

Jackie is out of bed

she is taking pictures

of a skinny, yellow crescent moon

rising over Ramshorn Peak

it’s her favorite moon

I can’t see it from where I lie

on my back at the head of the bed

she really wants me to see it

I think at first it’s too much trouble

but we go for it

Jackie lifts me onto the side of the bed

she puts the gait belt on me

drags me to the foot of the bed

flings my legs around

onto a pillow she has placed

over the foot board

she opens all the blinds

I lean back

look behind my shoulder

Jackie holds me up

keeping me from falling over

I glimpse through the tall chokecherry tree

out our bedroom window

the golden crescent moon rising over the mountains

as the sun rises behind it

the moon turns white

and fades into the blue sky

Busy Weekend

It's been a busy weekend. 

My brother Ben arrived on Thursday and left this morning. 

We had friends over every night.

On Friday we visited the mountain store and listened to Lauren sing at the Carabiner. 

Micah headed back to college this morning as well.

Lauren came over today with her new puppies.

TMI

March 22. 2017

TMI

Even from me, Mr. Open and Honest,

there can be TMI.

This morning

I was heading to the toilet,

which is a big production.

On my bookshelf by my bed,

I noticed a urinal full of pee

still sitting there.

I said to Candice,

‘You should take a picture,

put it on the blog.”

Candice said,

“You want me to?”

I said, “no, TMI.”

Then Jackie and Candice

helped me stand up,

get to the walker,

and walk to the toilet.

As I stood up

the urge to go poop

overwhelmed me.

I pooped in my pants.

Jackie and Candice

didn’t know where to put me.

I ended up on the floor.

On the way

down to the floor

my right leg strained

but somehow I found myself

safely on my back.

In some ways

it felt good to lay down on the floor,

but I had no idea how I was going to get up.

Somehow Jackie and Candice

cleaned me up without making a mess on the carpet.

They made some phone calls

looking for a strong guy to help us.

Candice’s boyfriend, Tim, was on his way over.

Tim was able to lift me off the floor,

no problem,

up into the portable shower chair.

He carried me in the shower chair to the toilet.

He lifted me from the chair to the toilet.

He lifted me from the toilet to the shower.

He lifted from the shower back to the toilet.

And then back to the shower.

Jackie took over from there,

giving me my daily tooth brush, shave and shower.

*

The albatross of the day

is my new ventilator,

the machine that is supposed to help me breathe.

Yesterday, a nurse from Billings

came to help me.

I’ve had the machine for three weeks

and haven’t been able to use it.

With her help, I was able to use it

for fifteen minutes,

a small victory.

I’m supposed to use it eventually

all night long.

In the meantime, in order to get used to it,

I need to do it as long as I can during the day.

The machine blows air into my diaphragm

and helps stretch out my compromised lungs.

After the nurse left yesterday

I tried to use the machine five times.

I wasn’t able to use it for more than three minutes.

Today I needed to try again.

During my massage with Sara,

we tried again with Michelle helping.

I panicked immediately.

I had Michelle take the mask off.

There’s a lot of pressure on me

to succeed with this machine.

Jackie came into the room during my massage

to talk to me.

In tears she told me that the consequences

of me being unable to breathe better with the machine

is a tracheostomy, but more so

the family’s desire to have me stick around

for as long as possible.

I am losing my body,

my voice is weak,

my hands don’t work,

I can hardly lift my arms,

my legs are heavy.

I can still stand up,

I can still walk maybe ten yards,

who knows for how long.

I can’t imagine what it will be like

when I can no longer do anything physical.

I am still here,

I am Mark,

my brain has not changed.

I am who I am.

But, to live without a body…

*

Jackie tells me,

she compares my need to conquer the machine

to having contractions.

She tells me how much I helped her

during the birth of our three children.

She tells me my soothing voice

helped her achieve an out of body experience

during Micah’s birth.

Sara tells me I am a teacher.

Uses a tuning fork.

My massage ends.

It’s Jackie’s turn.

Michelle feeds me lunch.

Micah and I go for a walk in the neighborhood

with Tucker and Debbie who came to see me and have dinner.

No more TMI.

Messages of Love

Everyday I receive texts, emails, snail mail cards
from friends, family, loved ones from all over the world.
They touch me deeply and help get me through the days.
Here are a few recent ones.

From Laila




Mark you are a good person who help me during my hard life with your nice wife  Jackie you are the best boss, father and husband .God bless you for the help and support for me and my son amir ,i never forget when I was so sad and you ask me let go for a walk out of the store and we can talk you want me to be happy for my son , take me two years to forget all the hurt inside of me I learn a big lesson in my life , you cant trust some  people for fake love that can cost you alot and stole your smile ,but now I have a candle lights my path is my son.and you have Jackie ,your kids and friends,familly helping that a gift from God ,i send you this picture to be in your blog like I'm there I wich if I can help love you and amir because we are part of your life with our heart ,thx again for every thing

Hi Jackie I love to see your smile all the time you are a great mom and wife  take care of your self too because your familly need you more than any thing else be strong all the time ,big hug , you helping people ,now people helping you that what you need. that mean you are the best be a proud of your self with all the love around you , you can do it Lady with big heart ,love laila ,amir .hi to my markey ,

From an old college friend who I lost touch with.

From my Aunt Sylvia who sends me cards weekly.

From Jackie's godmother, Aunt Emily who sends frequent cards and texts.

From my dear cousin Ruthie after her visit.

Visionary

3/19/2017

Last night, I went to the James Sewell ballet at the WMPAC

On arriving, getting situated in my spot

I immediately ran into John Bauchman

I haven’t seen him in over a year

He was our original partner 

In the Hungry Moose building in Town Center

It was very nice to see him

a bit intense

His wife Patty had a stroke over a year ago

I knew nothing about it

John looked great and told me that Patty was doing well

It was hard to talk to him because my voice is so soft 

And WMPAC is so loud

There were others I ran into as well 

I told everybody to please feel free to text 

And visit me at home when possible

The ballet was awesome.

I found the first half very soothing

I had trouble keeping my eyes open

The dancers were so fit

Their performances were flawless

The ballet after intermission was very intense

It was futuristic, robotic, digital

The body work was stiff, abrupt and unnatural

It made me very anxious and lasted way too long

Being who I am and watching these amazing bodies 

Using muscles that I didn’t know I had when I was healthy

It was too intense for me

By the end of the show my body was so stiff

I could hardly control my chair

I needed to go home

Somehow I made my way out of WMPAC

Candice took over the controls of my chair 

Got me up the ramp and into the van

While she was pressing the button to pull in the ramp

Hannah stepped on the ramp

Thank God she didn’t fall 

and stumbled her way into the van

She looked at me intensely with tears in her eyes

She said to me, I am so happy to see you at the show

You are a visionary

You have the opportunity to see the world 

in a different way than anybody else

You are a visionary

It was a very intense way to end a very intense evening

Ode to JJ

Jackie went to Targhee this weekend

to watch Howie’s freeride skiing competition

We haven’t had a day apart since first diagnosis

And the angels keep coming

Our home has become a revolving door of love

People in the Big Sky community keep showing up

to help take care of me or just to see me

Right now I am sitting with Kristin and JJ 

Kristin is typing this for me

I just noticed how pretty her necklace was and complimented her

And JJ said “are you hitting on my wife”

I said, “Of course I am, we have done handstands together.

I bet you never have done that with her”

The other day, I was taking a walk outside 

with Jackie and Kathy House

Drive Around Dan was driving by and pulled over

said to me “you are the best, you are the best, 

you are the best, you are the best”

got out of the car and walked with us

Dan and know each other for the entire time that

I have been in Big Sky, over 23 years,

but we don’t really know each other that well

There he is stopping his day and walking with me for an hour

He lent me the first wine book that I ever read

It was all about the history of Napa Valley

After reading that book, I was hooked

and I have read many wine books since.

I sometimes wonder about my place in the Big Sky community

I have often been reminded about how grumpy I could be at work

Jackie would often explain to people that I was just working hard

Some of my best friend’s first memories of me 

are about me being mean

My buddy Josh often recalls the first time we met when he asked me

where the tomatoes were

I walked over to him and said “right here in front of you”

he says he bought his tomatoes and ran

At the same time, others tell me

how their first experience on arriving to Big Sky was the Hungry Moose

how they fondly recall the days of the old Moose

when we could stand around and visit 

for over an hour without interruption

I wrote this poem for JJ after our employee party back in December

JJ joined the festivities wearing a sweatsedo and got the idea to get me one too:

Ode to J.J.

20 years ago, a young man from Pennsylvania

arrived to Big Sky

first stop Hungry Moose

his parents owned a natural food and supplements store

which he grew up in

he was coming to Big Sky

to teach elementary school

we talked and talked about teaching and retail

10 years later after J.J. had taught all 3 of my boys

in the 4^th grade

we ran into each other at the bar

and shared shot after shot

and laugh after laugh

I’ve watched him make friends,

I’ve watched him get married

I’ve watched him become a father

I’ve watched him become a man, a town leader, a mensch

During middle school basketball I ran the scoreboard  and he coached

During high school football I ran the scoreboard and he announced

he has become famous for his sweat suits

and just yesterday he sent my son Howie home

with one for me

I wear it with pride