My Cousin Lynn Kellermann

Thursday, May 25th my cousin Lynnie
died of complications from brain cancer
she battled for three years

I was so happy to talk to Lynnie at Passover
every time we spoke I was somewhat aware 
it could be the last time we spoke
I really didn’t know what Lynnie’s day to day was like
I can only imagine how difficult it was

Lynnie told me she produced tv stories 
about people with ALS
she understood what I was dealing with
she felt terrible

we spoke for about half an hour
I don't remember what else we talked about
it was just so special
to hear her voice

I have many memories of Lynnie 
I adored the way Lynnie called Harold Rah 
growing up I always wanted to go 
to the house in Farmingdale 
spend time with Lynnie
it was very hilly there
I faintly remember sledding and biking
down the hills

Lynnie loved her time in Montana
I remember her distinctly 
at Micah’s Bar Mitzvah weekend
the Thursday night before
we had a more intimate gathering at our house
Lynnie was there
I remember her loving 
the double rainbow we had that evening 
outside the window
over the river by our house

when she came back to Montana with Nathan 
on vacation we took a hike together in Beehive Basin
Micah and Nathan slid on snow at the top
it was in August
I caught some fish in the alpine lake
Lynnie was beside herself in joy

I loved Lynnie
I always enjoyed seeing her 
spending time with her 
though in our lives we hardly ever saw each other

I will always treasure the time we did spend together

 

 

Memorial Day BBQ

the Rowley-Middletons
built me a ramp
so I could actually
get into their house
onto their back porch
to see the river rushing by
work on my tan
enjoy the sunny warm
unusual spring weather

now I have another house
I can get into
thank god for good friends

Howie's back from skiing in the Beartooths

Hanging out with Debby and Juliana

Getting some love from Barbara with Renee and Emma

Visiting with Renee on the back porch

Getting some love from Buddy

Getting some love from Jackie

The dinner scene

Things Are Looking Up And Down

feeding tube check

supra pubic catheter check

healthy yellow pee check

liquid hope, food for feeding tube ordered check

but the feeding tube needs to be flushed

every four hours

the supra pubic catheter causes bladder spasms

whenever I have gas

the ventilator which I need to use

eight hours a day

causes gas

I have had a low grade fever

for two weeks 

the pain in my arms is firing up

making me not able to think straight

we keep trying new arm pillows

but nothing seems to work

the ALS clinic in Salt Lake

was very useful

but in the end

nothing was truly accomplished

all my issues

are still here

but I don’t go pee anymore

well, I do

but straight from my bladder

into a bag

I don’t have to eat anymore

or swallow pills

but I still can

if I want to

things keep progressing

it’s a boxing match

I’ll never win

but I’ll stay on my feet

or in my chair

First Stop: In And Out Burger

Micah is learning how to use the cough assist 

A long day at the ALS clinic

It's a potty party

Cousins Jessica and Hunter join the Robin family for a sushi party the night before my feeding tube procedure

After getting the feeding tube

Candice exhausted

Andrew says Good-bye as we leave Salt Lake City

Back from Salt Lake City
Out for a walk with Cece and Nahza







Blogging this post with Cece

Soul Shine Celebration June 22 2017

we are throwing a big party
as a benefit for ALS
as a thank you to the Big Sky community
to listen to good music
to have good old fashioned fun
a carnival for kids of all ages
food, drink and more fun
we hope you all can make it
to learn more about the organizations
we encourage you to support
visit bigskysoulshine.org

SOUL SHINE CELEBRATION - The Hungry Moose Market and Deli Adds Carnival and ALS Awareness to Annual Community Event

June 22, 2017 Town Center Stage Park beginning at 5pm

As in past years, The Hungry Moose Market and Deli will sponsor the first Music in the Mountains Concert Series on June 22nd. But this June, the event has been enhanced to both thank and celebrate the Big Sky Community and to raise awareness about a disease that has hit home for The Robin family, the owners of the Hungry Moose.

Last September, Mark Robin was diagnosed with Amytrophic Lateral Sclerosis (ALS), also known as Lou Gherig’s disease. Since that time, the Robin family, along with their close friends, family and the community of Big Sky has learned first hand the devastating effects of this disease on a previously very healthy individual. “The disease is dark” says Jackie Robin “but the outpouring of love and support for our family has been nothing but light-filled. We are overwhelmed.”

The inspiration for the name Soul Shine came from one of many hand made cards Mark has received from local kids who know him as Marky Moose. It read, “you have Soul Shine. I love you”.

In honor of Mark, and as a thank you to the community for their outpouring of support, this year’s concert event featuring The L’il Smokies and the Gallatin Grass Project will also include a free carnival beginning at 5pm. Additional music by Lauren Jackson, complimentary food and drinks, games, a dunking booth, a balloon-artist clown, face- painting, cotton candy and more, are all planned.

“The Hungry Moose family—and the Robin family—have never been more grateful to our friends, employees, customers and community,” explains Jackie Robin. “our staff has done a fantastic job managing both stores, our customers have been loyal, and we’ve been overwhelmed with the help and support we’ve received from so many.”

The Robin family has identified two organizations working to support people with ALS and their famiies and one research facility working on treatments. The Evergreen Chapter of the National ALS society is located near Seattle but covers Montana and has been a great resource for the Robin Family. Team Gleason-founded and inspired by former NFL player, Steve Gleason focuses on the quality of life of the ALS sufferer providing technology grants and helping families realize dreams of travel and adventure. Massachusetts General Hospital ALS clinic is dedicated to finding treatments to ease the path of a person with ALS.

Donations to any of these three organizations are gratefully encouraged. There will be an information tent for all three at the Soul Shine Celebration or visit https://bigskysoulshine.org to learn more and contribute online.

To follow Mark Robin’s life with ALS, visit his blog, markymooseinbigsky.blogspot.com. or check out  Soul Shine on Facebook at https://www.facebook.com/BigSkySoulShine and link to the blog and giving opportunities. 

Operation Free Willy

Friday at 11:30 am

we headed to Bozeman

for my supra pubic catheter

the procedure was scheduled for 1:00 pm

we arrived early

for a change

Hanna, our nurse for the day

found us in the waiting room

took us away

to our small triage room

Hanna clamped down

my Foley catheter

she gave me an IV

in case I needed pain killers

met with the doctor

who went over the procedure with us

after that we went to radiology

there were at least six people

in the operation room

working on me

two guys from radiology hoisted me

on to the table from my power chair

firing up my shoulders

the clamp came undone

they had to put liquid into my bladder

computers showing x-rays into my body

hovered above

I was on my ventilator

breathing steadily

Cara, the second nurse

massaged my feet

Hanna, my cheerleader, kept

telling me how good I was doing

the doctor proceeded steadily

starting with local anesthetic

putting a hole through my waist

into my bladder

Hanna announced

the procedure was complete

she told me I had something on Jackie

I had done the procedure with no pain meds

Cara removed the Foley catheter

Willy was free

Jackie and Tracy came out

from behind the window and joined me

this time we put on a gait belt

the two guys from radiology

hoisted me back into my power chair

*

today is Sunday

I am still very sore

at the incision

Mimi and Kathy

arrived late Friday night

have been helping

with my recovery

Micah arrived late on Thursday

driving 15 hours home from college

in the snow and rain

he too has been helping

last night I moaned and groaned

all night long

as Kathy and Mimi

took turns

trying to make me comfortable

I’m impossible

*

I’m nervous about Salt Lake City

we leave on Tuesday

clinic on Wednesday

PEG tube on Thursday

home on Friday

I’m still not recovered from

the supra pubic catheter

yet I’m scheduled

for more

say a prayer for me

wish me good luck

I’m sure I’ll be fine

but I could use all the help I can get

in the meantime

Willy is free