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.

---------------------------------

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






Friday, July 14, 2017

sunrises, cameras and the Tobii Dynavox I-12


About once a week in the summer I will watch the sunrise. I like to go outside in the early morning, when the sky is still grey, to see the sky transition through all the colors leading up to that moment when the sun comes out. It is so peaceful. 

This particular morning my parents were over, so my Dad came out with me and took a few pictures. 

I really miss holding a camera and taking pictures.  Back when 35mm film was popular, I had my 24 chances to get the perfect picture.  I would drop off the roll of film to be developed.  And wait.  There was always that anticipation when picking up the envelope to see how the prints turned out.   

While I love photography, even more so I love being able to communicate.  In the past I mentioned that my voice is rubbish. Well I was practically a nightingale back then compared to how I sound now! 

Recently Jeff and I have been meeting with a Speech Therapist and different reps for portable speech generating devices because my voice is at it's end.  I felt a bit anxious meeting with the different people until one of them mentioned how the device has two cameras. What was that?  It has a 5 mp front facing camera and a 2 mp rear facing camera.   

Obviously the primary need is to have a voice (any voice will do) and to communicate clearly.  But, to take pictures with my eyes would be awesome too. 

Currently I am looking into the Tobii Dynavox I-12. It would attach directly to my wheelchair. 


Friday, May 5, 2017

don't forget to check the dryer


Last week we sold our clothes dryer on the classifieds.  About an hour after the buyer picked it up he messaged Jeff asking, “Did you know there are clothes in the dryer?”

That would be a “Negative.”

When Jeff relayed this conversation at dinner, Erik got a funny look on his face and said, “Those are MY clothes!”

The rest of the family burst into laughter which Erik did not find funny at all.

The funny thing (there’s that word again) is that the past two or three days Erik had been saying he couldn’t find some clothes he wanted to wear.  Whenever he brought it up I suggested he look under his bed, or in the pile of stuff on the floor in his closet or in the hamper.

Turns out that they were just in the dryer all clean and fluffy.

This week Erik decided to do his own laundry by himself.  No more runaway clothes.


Hike they went on in April near Escalante. 

Tuesday, May 2, 2017

Rodrigo y Gabriela




Have you ever listened to the guitar duo, Rodrigo y Gabriela?

The first time I ever listened to them the music was like nothing I’d ever heard and it blew me away. 

Rodrigo y Gabriela are touring the U.S.  later in May and early June, and for some UNFORTUNATE reason they are NOT coming to Salt Lake City.  

If you are lucky enough to live near one cities where they will be performing will you go for me?

Here is a performance from a TED Talk.  

Monday, April 10, 2017

another memory saved






This picture is from last fall when Erik ran cross-country. Now he is in track.

I love going to the meets and watching and cheering for all the kids.

I love that most of them are there trying to improve their own PR.

And...

I love those stinky post race hugs.



Friday, April 7, 2017

save a memory, take a picture


So many memories I don't want to forget, and taking a picture is one way to keep them alive.




I am grateful to Claire for having her ipod handy to snap these pictures of "Girls Night".   We had just finished watching a tween movie and decided to have a hula-hoop contest.  Megan put on some music and we all took turns.

Claire can get the hula-hoop from her waist, to her neck, and back to her waist without dropping it.

For me, they put the hula-hoop around my waist and I turned my wheelchair around in circles.

Megan hula-hooped to "Car Radio"  by 21 Pilots.  It cracked me up to watch her hula-hoop to the entire song and half of the next, while singing, like it was a perfectly normal thing to do.










Saturday, March 25, 2017

good morning


Email that I sent to my friend, NeYoda.
It is a nickname given to her (by Dawn) because she is wise, like Yoda.



Good morning NeYoda, 

It looks like spring.  It smells like spring. It feels like spring. Finally!

For me this time of year feels more spiritual... I will sit outside with my eyes closed and there is an energy, that is almost tangible, as everything that was dormant starts to wake up and grow again.   And I don't mean any of that in some weird hippie way.  I just love this time of year.

So Megan.

I looked at Megan a couple of weeks ago and there was something different about her.  Her eyebrows were half gone!  What The Heck!?  Turns Megan had tried to shape her eyebrows with a razor. It didn't look so good. Oh, she also cut her long eyelashes back by half.  Why?  I am still not entirely sure.  The best answer might be, "Because she's Megan."

Sending love,
Janae :)


 
NeYoda and Megan back in 2012.

Saturday, February 4, 2017

"First and foremost, you are a child of God."


“First and foremost, you are a child of God.” - Elder F. Enzio Busche
-     

Here is a short 6 minute clip.  The words bring peace and hope and love.

Thank you Heather for sending this to me.  




Thursday, February 2, 2017

Why Not?


Hello February! 

So far February looks VERY similar to January, but I am okay with that.



Jeff and I and our kids sometimes talk about, “Why Not?”

(I think this idea originated with our friends, John Matthew and Megan.)

This is how it goes:  Everyone takes a turn saying something that they might want to do by phrasing it with a “Why Not.”  The only rule is that NO ONE can tell you why you CAN’T do it or why your idea is impossible or ridiculous etc.

It is fun to think big, or think differently, or to think your ideas out loud and just maybe put them into motion.

Recently my sister’s family was over and here some of the “Why Not’s” we came up with.
(I will say that this game can be more fun to play with kids than adults.)   


“Why Not”…

(Remember the rule.  You CANNOT tell the other people why their idea won’t work.) 

Jump out of an exploding spaceship while shooting a rocket launcher in space.
Own 5 billion dollars.
Eat steak every day.
Own an elephant.
Get a job as a billboard.
Become a pigeon whisperer.
Fly an A10 jet.
Get a flame thrower.
Actually manage New Year's resolutions.
Get a dog.
Find a cure for death.
Become a plant.
Eat all the Twinkies in America.
Stay up past 9:30.
Beat Erik in ping pong.
Analyze each line of the Divine Comedy.
Major in Philosophy.
Visit Western Europe.
Read more.
Get a cat.
Get a dragon.
Get a CAT-DRAGON.
Save up for a trampoline.
Travel to South America.
Get a Bugatti.
Go to the beach.
Go to the Farallon Islands to see a great white shark.  
Eat a whole container of Ben & Jerry’s by myself in one sitting.
Organize a comedy night.
Go to the Festival of Colors at the Hindu temple in Spanish Fork.
Plant more flowers in the green space.  
Drive the coast from Mexico to Canada.


Some of the “Why Not” participants. 
Cousins! 

Saturday, January 7, 2017

for the love

Background:
Festival of Trees is a fundraiser for Primary Children’s Hospital.  It is an event where people decorate and donate a Christmas tree, which the Festival sells, and all of the money goes to Primary Children’s Hospital.   People donate beautiful quilts, wreaths, centerpieces and gingerbread houses which are also sold.  The event takes place the Monday-Saturday after Thanksgiving.

This year we donated a tree. We named our tree “For the Love”.   That phrase can be a cheeky expression, BUT this time it represented all the love and effort that went into it.

When I use the word “we”, there is a whole lot of “WE” that went into making the tree happen. Friends and family that contributed their talents or donated in one way or another include:  Jenn J., Laura, Heather, Andrea, Shelby, Liz, Kindra, Deb, Lynette, Whittney, Jenn, Amy, Dawn, Laurie, Teri, Martin, Louise, Jeff, Claire, Megan, Erik, Kristen, Heidi, Linda, Merilyn, LaKay, Terrie, Cindy, Dave & Dawn.

There were quite a few handmade elements.  Felt embroidered ornaments, jute wrapped balls, moss sticks, hand felted wool fairies and blue eggs, the tree skirt, to the dogwood branch star that my Dad made.  We created a display with tree stumps, lanterns, a toboggan and a gift basket themed after the book, "The Mitten," by Jan Brett. 

Oh let me just show you :) 

















The flame in the candle looks real, but it isn't. 



I will be honest. That Monday after Thanksgiving when we finally set up the tree… I never wanted to see another tree in my life.  Never.  Well two days later I found myself thinking, “Hmm, if we did a tree next year what would it look like?”