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. 

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.