Friday, February 23, 2018

always room for peace

I'm in a good place but there is always room for more peace.
This week these words were comfort food for my soul. 

Where Can I Turn for Peace

Where can I turn for peace?
Where is my solace
When other sources cease to make me whole?
When with a wounded heart, anger, or malice,
I draw myself apart,
Searching my soul?

Where, when my aching grows,
Where, when I languish,
Where, in my need to know, where can I run?
Where is the quiet hand to calm my anguish?
Who, who can understand?
He, only One.

He answers privately,
Reaches my reaching
In my Gethsemane, Savior and Friend.
Gentle the peace he finds for my beseeching.
Constant he is and kind,
Love without end.

Emma Lou Thayne/ Joleen G. Meredith  

Friday, January 26, 2018

typical morning routine

My day starts early…around 1:30ish.

I wake up because either my bipap has slipped and is blasting me in the face, or my legs start hurting.  If it is the bipap, then Jeff wakes up to take it off or reposition the mask.  If it is the legs,  I’ll shift positions and then fall asleep.  From there I wake up multiple times.  It has been years since I've slept through the night.  Same probably goes for Jeff. 

Sometimes I get up when his alarm goes off at 5:15am, so I can type. Often, I stay in bed until 7:00am, that way I can snuggle with my sleepy eyed children for a few minutes when they roll down stairs.  When it is time, Jeff sits me up, puts my hair in a ponytail, and then carefully... slowly... helps me walk to the toilet.  From there, he helps me to the wheelchair, puts slippers on my feet and a blanket on my lap.  

For breakfast I usually have a can of the tube food because it is easy to pour it in, top it off with some water and just be done.  Other times I might have a few bites of oatmeal, scrambled egg or something soft and easy to eat.

The CNA arrives.  She helps me shower and get dressed etc. That takes around 60 minutes.  A friend will come to do my hair and visit.  There are four different friends that will come one morning a week with other friends periodically subbing for them.  The other days the CNA will help.  This group of friends has been helping me with hair for 7 or 8 years!  Who does that?    

It is ridiculous how high maintenance I've become.

Jeff.  Being a caregiver is exhausting.  ALS is just as hard on him as it is on me, obviously in different ways, but he does everything he can for our family.  Very few people realize all that does.  He is my sweetheart. 

I used the word, Sweetheart, to describe Jeff, but the term we use more often is 
ցաւդ տանեմ

The pronunciation is   (ˈtsʰɑvət tɑnɛm)  or  (cʿavd tanem). This is an Armenian expression of endearment similar to Sweetheart.  Its literal meaning is, "I would take away your pain.”

(Jeff was a missionary for The Church of Jesus Christ of Latter Day Saints from 1995-1997 and served in Russia and Armenia.  It was in Armenia where he learned ցաւդ տանեմ.) 

Saturday, January 20, 2018

arms like Vin Diesel's

We were playing the game, What’s Yours Like, where one person is trying to guess a word from rather vague clues that everybody else is giving.

In one round as we go around the circle people are saying things such as:
“Mine are brown.”
“I’ve had mine since I was born.”
“Mine are always with me.”

Then it is Jeff’s turn.  And with a straight face he says, “Mine are like Vin Diesel’s.”

Everyone laughs and the person correctly guesses the word, “arms.”

If you make a claim like that you had better be ready to own it. 

With the help of Laurie, Aubrey and their families images of Vin Diesel started showing up EVERYWHERE.  In Jeff’s truck, behind the milk, on family pictures, in the cereal box, in plants and on the ceiling fan.  He has found around 50, but there are a few more in hiding. 

2004 Mazatlan, Erik, baby Claire and ummm... Jeff (?) 

Wednesday, December 20, 2017

Merry Christmas


There is so much to be grateful for.  

Knowing we are children of God... 

Knowing that God has a plan for us... 

Knowing we came to earth with a purpose in life... 

I'm grateful for the birth of a little baby boy over two millennia ago who would become our Savior.  Jesus still is, and will always be, The Living Christ. 

Wishing you Love, Peace and Joy. 



Friday, December 1, 2017

art class

This past year we had the opportunity to paint with two of our favorite artists.  
I have a tremendous amount of respect for these women as artists, and I love them as friends. 
To watch them teach my daughters made my heart so happy.

I only have photos of painting with Jordan. 

Megan wanted to paint "lips" 

Claire followed one of Jordan's "color studies" 

I found a simple program online where I could sketch with my eyes.... One click at a time.
This is the first tree I've drawn in years. 

Monday, July 31, 2017

yes erik, no mom mom

What do you think of the note Erik made for me when he was four?   I can't recall the circumstances but HE WAS MAD.  What I do remember is a little brown-eyed-boy marching out of his bedroom and presenting me with this note.  I kept it as a reminder that I’m not always right and to listen to what he has to say.

I have a question. 

Q:  Did ANYONE ever sit down and tell you how hard parenting would be?

(Someone in the background shouts out, “That, my friend, is a dumb question!” in reference to the previous blog post.)

Touché!  I deserved that. 

But seriously, NO ONE ever told me how difficult it would be. 

Each phase has its set of challenges.  I want to parent consistently, except what works with Claire doesn’t always work with Megan and the same goes for Erik.  I want them to learn from my mistakes, but I know that with their personalities, many things they will have to learn in their own way. 

So I try to tell them I love them often.  Because, while I may not like how they might be acting at the moment, I do love them no matter what.  It’s a forever type of love.  

Here's to all you parents out there!  

Thursday, July 20, 2017

als - voice banking

I am sitting here wondering, "Why didn't I EVER RECORD MY VOICE!"

That certainly was dumb of me.  There were about two or three years post diagnosis where I COULD HAVE HAD clear recordings of words and phrases to be used later for AAC (augmentative and alternative communication).  But I didn't. 

Time for some Q & A... 

Q: Why didn't you? 

A:  That is a great question.  

Sigh.  Honestly, probably because I was terrified of the disease.  I wanted to fight it, and in my mind, voice banking was admitting I couldn't stop what was happening.  And then I figured I could always do it "later."  So foolish.

Q:  Do you regret it? 

A:  And THAT, my friend, is a dumb question. 

I will refer you back to the second sentence of this post.  Of course I regret it and now there are the consequences from my lack-of-foresight decision.  Despite all the capitalization of words, I am not angry, more of that wistful feeling of wishing I could go back in time.  Since that can't happen I'll move on. 

The purpose of this post is to say that someday if you are diagnosed with als, don't put it off, record that beautiful voice of yours! 

Actually, you never know what will happen to you, so why not record something today.  Record a few phrases, or a story, or you reading your kids favorite story OR singing a lullaby.


I woke up thinking what I wrote yesterday, in particular, the comment about "a dumb question".   I take that back. Ask away.