Duane hasn’t spoken in four days.  

His voice is gone.  

I can read his lips – mostly – but it’s hard.  If I get a work wrong he rolls his eyes and if I get it wrong again he shakes his head and huffs, like I’m doing it on purpose.  

We have speech machine.  We got it about a year and a half ago, it works with eye gazing technology.  He never learned to use it.  He’s tried a few times over the last year but gets mad and quits.  He asked me to pull it out the other day because he needs it.  It’s hard to use, it takes time to learn it, it’s tiring and it’s new.  He tried to kick it over two times yesterday… He would rather be mad at me for not being able to read his lips than take any sort of responsibility for not learning it.  

– xoxo Victoria

One day last week out of the blue (sky), well not blue more like grey and cloudy, Duane decided he wanted to go sit on the beach.  Donny came over and off to the beach we went.  We spent about a hour there with Buddy, just hanging out and watching the waves.  

I fear that this was the last good day we will have.  

– xoxo Victoria

December 7, 2015.  The day we got married.  It’s been a year.  I can’t believe how fast this year went.  We had a nice anniversary and spent the day alone together at home with Buddy.  Duane even surprised me with roses….he said it took him all night to go out and get them and to write the card!  

– xoxo Victoria

Duane has decided that after I pass my Captain’s License test (tomorrow!!!) we are taking the boat to Cabo.  He wants Christmas in Cabo – me too!  I don’t think it’s a possibility, it’s at least 5 days down and I’m not sure Duane can physically make the trip, but I’ll let him plan.  I’ll hold the book for him, turn the pages and look at all the pictures.  There is something to be said for having something to look forward to!  

– xoxo Victoria

This is our first Christmas tree in eight years.  For my first Christmas in Reno Duane surprised me with a tree when I came home from work.  The next year I decided to surprise Duane with a tree when he came home from work…I didn’t know you had to cut the bottom off of the tree before you put it in the holder – I thought the screw things just held it in place.  WRONG!!!  I spent hours decorating it and setting it up, so excited for Duane to see it the next morning.  (I even drove in the snow to get the tree – this was right after I rolled his truck in the snow! – Big Deal) Well when he got home in the morning the door slammed behind him and the tree tipped over onto our glass kitchen table. OOPSIE!  So we haven’t had a tree since.  I figured this little one would work perfect! 

Wishing everyone Happy Holidays and Merry Christmas!!

– xoxo Victoria

Everyone has left.  Thanksgiving is over.  This is how Duane and Buddy spent the next day! HAHAHA!!  OUT!  ALL DAY!! At least I was able to do the laundry and clean in peace!

– xoxo Victoria

Happy Thanksgiving Eve!!!  This year we had and Under The Sea themed party.  With my parents, Duane’s family and lots of friends we had over 30 people show up in costume.  It was a great night full of laughs, jokes and amazing seafood.  It couldn’t have gone any better.  It was our best themed party yet.  Thank you to all who joined in the fun!

– xoxo Victoria

Duane has one of the most high-tech advanced wheelchairs on the market.  He won’t use it, he has actually refused to learn to use it. So it sits out front, covered from the elements and I charge it every week in case he decides he want to give it a whirl.  Well apparently a herd of rodents decided if he wasn’t going to use it then they were going to store their food for the winter on it!  I screamed when I saw it!. Now I uncover it every morning and cover the computer part overnight to avoid this happening agin.  I can’r believe how much they had stocked away.

– xoxo Victoria

So here is a little rant…  

This law doesn’t help those who really need it.  The patient needs to be able to write and speak their wish – ok – a speech machine can help with that.  The drugs also need to be self -administered – WHAT???  This is a law that does not completely help everyone that needs it.  ALS patients don’t qualify at the stage when one would consider this an option.  ALS is one of the worst, most horrific diseases on this planet.  Your muscles no longer work to control your body, everything must be done for you, but your mind stay 100% the same.  ALS patients are actual prisoners in their own body… and they are stuck.  It is one of the most heartbreaking things to watch.  There must be considerations made to help those fighting this cruel disease. 

– xoxo Victoria

HAHAHAHAHAHAHAHAHAHAHA – Everyday that we can laugh is a good day.  It’s the simple things.  Jokes, laughed, hugs and cuddles.

– xoxo Victoria