Sunday, May 3, 2015

The Race Is On

Five years ago, Alexandra, Mark, Graham 
and friends, who are really family now.
Ran.

And ran, and ran and ran.

And drove and drove and drove.

In their first
Ragnar Relay Race.
From Boston to Provincetown.


Raising money for 
Project ReMind.

This money was to go toward research.

Frontotemporal Degeneration
The disease that Kenny, Alexandra and Graham's dad.
My husband and best friend
was diagnosed with when he was 49 years old.

Alexandra was a Sophomore in college.
Graham was a Senior in high school.

A crazy time in our lives. 
When Kenny was diagnosed he said this to me.

"I know they can't help me,
but if through me they can
help other families
it will be a good thing."

They ran in May.
Kenny died in August,
five years after his diagnosis.

is the legacy

Kenny, the money that has been donated,
is making a difference.
We are reading about it in the journals.
We are hearing it on the news.
Things will be better for other families.




Friday, May 8
these amazing men and women
will be running again.
A
no matter how big or small
will help.

It all helps.

Thank you






xoxo



Thursday, April 16, 2015

Happy Birthday, Kenny

You were always older than me for four months.

It was great, because

I got used to hearing that number.

This one is a biggie.

Sixty.

It sounds odd, doesn't it? 

Would I have had a surprise party for you?

Would we have traveled?

I wonder what we would have been doing.

I miss sharing things with you.

This isn't what we planned.

I am still getting used to my life as it is. 

There are bumps in the road. 

It's an odd life.

Really.


We were so young
 Oh, what a day.
Summer at The Back Eddy
 GIANT snowmama and daddy
 Harwichport
 Acoaxet
 No words needed

We're doing ok, Kenny.

We know you are with us.

That helps.

I just wish you could make me crazy again.

Asking me how productive I am during the day.

Asking me crazy questions during a movie.

I miss that.

xoxo

Sunday, March 22, 2015

Happy Birthday dear Grammy



Emma Maude Fuller Armbrust

Happy Birthday, Grammy!

Your spirit continues to surround me,

and I often find myself with a smile on my face

knowing what you would be saying in a given situation.

"Couldn't be better"

"Oh, that naughty puppy tail"

There are more, but often it is just your smile.

Your kind and selfless smile. 

I am grateful to have known you.

For those who didn't,

This was written by her, 

in a creative writing class

when she was 85years old.


This is the finale.


To my children and grandchildren.

You are my world and I am proud of you.

We are continuing with our Creative Writing Class again this year -

and I will be carrying on with these boring pages.

Now we have chosen the subject of "Free Speech" to write on.

I, of course, believe in free speech.

We are a very lucky country founded on freedom.

(read our history)

Everyone has rights and must execute them to the best of their ability.

But, I think this changing world is tiresome!

One should be thoughtful, have patience, and be careful of speech and opinions.

Be considerate of the feelings of other people.

Now that I am old I am so often mistaken,

Please forgive me.

I am thankful to be independent, and thankful to accept favors you can bestow on me.

God Bless you, one and all




Tuesday, March 17, 2015

An Irish Addendum

And so it would seem
that Francis Lundgren
(who I have been sure is really Swedish)
has a mother.

I know, I know.
Her surname

O'DONNELL

Can you believe it??

Well, here's the thing.
I've often said that my brain is so 
utterly full of fluff
that I can retain nothing of real importance.

It's true. 

I did actually know this.
I have often bragged about it. 

You see, her brother was
Fr. Charles O'Donnell
President of Notre Dame 1928-1934
Poet
and our great, great Uncle

He was a good-looking fellow, that Chuck!

So for those of you who watch Notre Dame Football,
To love them or hate them,
When they sing the Alma Mater to the students after the game.
Fr. Charles O'Donnell,
my great, great Irish uncle
wrote the words.


Notre Dame, Our Mother
Tender, Strong, and True
Proudly in the Heavens
Gleams Thy Gold and Blue
Glory's Mantle Cloaks Thee
Golden is Thy Fame
And Our Hearts Forever 
Praise Thee, Notre Dame
And Our Hearts Forever
Love Thee Notre Dame







On Being Irish?

"It's St. Patrick's Day!
Be sure to wear green
Or your grandfather 
Will turn over in his grave"

Thinking about that now,
I have so many questions--

How does one turn over in a grave?
Should he be in a grave if he is turning over?

I digress.

Said grandfather was Francis Lundgren
Our lineage has always been suspect.
(In my mind)

But Lundgren is
 by all accounts
Swedish

Not Irish
Never Irish

However, I will continue to wear green,
On this most "holy" of days

For fear there will be rumbling from a grave.


Said grandfather--
I loved him
and he, in fact,
thought
I was pretty special.


Still not sure he was actually Irish...
But I will have a pint of Guinness
and toast to you dear, Francis

Tuesday, March 10, 2015

and today I cried









Nine years ago this week

Kenny was diagnosed with FTD

or as best they could --

by ruling other things out.

Nine years ago this week,

 we were relieved.

As I have said before,

little did we know.

"Avoid stress"
Travel now"
"Kenny, she will need to finish your sentences"
"Laugh at the absurdity of this"
"Cheryl, protect him"
"Simplify life"
"It will be lonely"
"People will not understand"
"There is no treatment"

These are a few of the things I remember our doctors
saying to us.

In simplifying, life became more complicated.

In protecting him, it became more lonely.

People did not understand.

Five and a half years after his diagnosis, Kenny's suffering ended.

He left us with work to do.

We needed to grow as a result of the hurt and the pain we all suffered.

And we needed to educate the world about FTD.


Tonight World Channel (PBS on my station)
will be airing

Looks Like Laury
Sounds Like Laury

It is a documentary following a woman with FTD
and her friend, Connie Shulman,
from Orange is the New Black

Laury had the Language Variant of FTD.
This is the same type Kenny was diagnosed with.

I will be watching at 8:00 tonight.

Because
It looked like Kenny and sounded like Kenny.







Wednesday, January 28, 2015

in which hilarity ensues at the manor

Most of you have seen my adorable little stove.
The one that the pups are usually 
lounging in front of.
Said stove had some issues the week before Juno hit. 
Leaving me lost and the pups and I were sort of chilly.
At the same time, I realized the heat in the addition
wasn't working. 

The day before the storm, the propane guys came out.
Spent the day on my little stove. 
It's perfect.
A part needs to be ordered for the other heat to work.
Nothing to fret.

The morning of the storm, I did my routine check.
Plenty of water for the pups and me.
I cooked rice and quinoa.
Roasted chicken and vegetables.
I had plenty of wine.

Last year I had been without power for a week.
I decided to fill the upstairs tubs with water.
Having a well and all
one must be able to flush.
A few minutes later I heard and saw water
coming from a ceiling fixture in the brick walkway. 
REALLY??? 
I tripped over myself running up
the stairs and let the water out
of the tub.

Note to self:
Replace the tub in the upstairs bathroom

Last night my faithful plowman came to do my driveway.
I was shocked by how much snow there was.
As he left I heard the 
beep, beep, beeping of the invisible fence unit.
A line had been severed.

Note to self:
Call in the morning

Time for bed. 
Really.

This morning was beautiful. 
A bluebird day.
I was truly trapped. The doors were snowed shut.
It was silly fun.


But the work had to be done.
Yoga pants on.
Another pair on.
Maybe my flannel PJ's over those.
Bean Boots, check.
Coat. Hat. Goves.
Gloves?
Only leather gloves.
Good leather gloves.

Note to self?

The snow was light.
Shoveling was pretty easy.
I am short, so getting to the top of my car?
Not so easy.

I decided to drive down to see how my road was.
Also to see if the mailman could reach the box.
In my mind, I thought,
"Pretty close, what if I just scoot in a little with my car...."
...an hour later, after digging and digging and digging.
I was out of the pickle I got myself into.

Things are never dull.