“There should be a children’s song: ‘If you’re happy and you know it, keep it to yourself and let your dad sleep.’” —Jim Gaffigan

Duane’s dad came to visit.  As always we had a great time.  We cleaned the boat, watched fishing videos and made fun of him while he napped and tried to pretend he wasn’t!  

– xoxo Victoria

“Our challenges don’t define us, our actions do.” ― Michael J. Fox

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This is our medical closet.  It doesn’t include Duane’s daily meds.  This is the stuff we may need, have needed or just stopped using but may need to add back in.  Today I organized it all, we had to make room for what we will need in the future.  We currently have three wheelchairs, a walker, a scooter, transfer boards, a shower chair, a portable toilet, toilet lifts, a speech machine, funny shaped pillows, knee pillows, braces, gait belts… 

– xoxo Victoria

“I used to have a blankie, and when my mom had to wash it, I would sit outside the dryer and watch it go round and round, and cry.” – Drew Barrymore

Buddy has had this duck since the day I brought him home.  It has been through his three surgeries, numerous moves and at least 50 repairs.  We hit a point today where ducky can no longer be sewn back together…he has to be patched.  

To all of those who say, “just toss the duck, he won’t know”.  I wish.  We can’t. One night about three years ago Duane and I spent 45 minutes searching the house, deck and water looking for this stupid toy with Buddy crying and whining the whole time.  We finally found it, outside under the hammock.  Straight to bed he went.  

At this point I’ll patch the dog everyday to keep the peace.

-xoxo Victoria

The Reason For Fewer Blog Posts

“Personally, I didn’t take a single photograph while I was there, but that’s not all that unusual for me. I suppose my aversion to snapping pictures may have something to do with shaky hands and blurry results, but there’s another reason: The act of lifting up the camera and positioning it between me and the object of my interest separates me from the experience.”
― Michael J. Fox

-xoxo Victoria

“Let’s get physical, physical…Let me hear your body talk, your body talk”, Olivia Newton-John

Duane’s dad is got into town last night.  Today they got to spend the day just hanging out and “talking”.  I snapped this picture as his brother was standing him up and his dad was helping to stretch him.  Duane was laughing so hard.  It was great to see!

-xoxo Victoria

“These Boots Are Made For Walking” – Nancy Sinatra

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I walked out last night.  For the first time since this whole thing started I left.  I went to the beach and sat on the wet sand and cried for a hour and twenty minutes.  It was amazing.

Duane’s was being “dumber than a suitcase full of buttholes” and I couldn’t deal anymore.  The conversation started normally and then it just flipped.  As the disease progresses he becomes more and more controlling, as he loses more control of his life and his abilities he becomes more controlling over me, my actions and decisions.  For the most part it’s doable.  But I think at this point he gets joy out of pulling the strings and putting people (me mostly) in bad situations.  

I knew his dad was on his way over.  So as soon as I heard the car door slam at 8:02pm I left.  I didn’t say goodbye I just left.  It was so nice.  When I came back later his dad, and brother and sister were here; he was never alone and he was taken care off and STILL ignoring me and treating me like crap.

Because he no longer cares about his life he doesn’t care about mine.  It’s sad and ungraceful and I couldn’t be more disappointed.

Here’s to a probably very quiet day today!

– xoxo Victoria

Coming Soon…

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No one ever tells you it will be this hard.  

Caregiving…Watching Someone Die.  

I’ve read every book, watched every movie – no one talks about the real stuff.  

About a year and a half ago Duane told me that after this was all said and done I needed to write a book about all of it…”but just the good stuff” he said.  That’s the problem, everyone talks about the good stuff and the good times and how important it is to stay positive.  

No one writes about the hard times and the horrific times.  About how it is okay to not be positive, to have a bad day, to cry in the shower.  No one admits it’s hard, it’s exhausting, it’s sad and it’s lonely.  No one talks about dealing with in-laws and friends and doctors and nurses and those people that are always right there to tell you what you are doing wrong.

There is no book explaining THE STUFF.  The stuff that you don’t even think about, the stuff that completely throws you for a loop.  The stuff you are so caught of guard by all you can do is freak out.  The stuff you are not prepared for because no one warned you about it!  

That’s the book I would buy.  

– xoxo Victoria

“We’ve Got No Troubles, Life Is The Bubbles, Under The Sea”, The Little Mermaid

Last week we had the opportunity to go to Sea World.  We were given free passes from Donny’s friend, Philip who is a show host there.  It was the first time we have ventured out for a real event, for fun, not necessity, in a while.  

After battling more traffic then we thought possible we had an amazing time.  The first thing we did when we made it into the park was go see the show that Philip hosts.  It is all pets; dogs, cats, pigs, even a kangaroo!  At the beginning of the show all the animals run around like crazy!  Buddy was in heaven – loving it!  It was a great show, Philip is great at what he does.  Unfortunately there are fireworks in the show which really freaked Buddy out.  So our service dog spent the show shaking in Donny’s lap! HAHAHAHA

While we were there we went through a few exhibits and saw turtles, penguins, beluga whales and sharks.  On the way out we stopped and watched the flamingos!!!  The sun was starting to set so Duane, Buddy and I headed home.  It was a great few hours and we all had a lot of fun.

– xoxo Victoria

“(sees the inside of the DMV) Wait. They’re all SLOTHS? ” – Zootopia

The DMV.  In California.  Two days before Christmas.  We need titles for two things.  We hadn’t been out of the house in a week due to rain and bad weather…..How could this go wrong?  

Well, when we got there we got we saw a HUGE, LONG line that was well outside the building.  BUT, a security guard saw us and pulled us in a put us in the front of the “disabled”  line.  If anyone thinks that went over well – you don’t know Duane.  He got a little teary and I chose to ignore it in hopes it would stop – it did.  I got the paperwork and filled it out.  Twenty minutes into waiting Duane decided he didn’t want to be there anymore.  Miraculously we were called right then.  We had the most unpleasant woman helping us – as I am apologizing for Duane not having his own number for his jet ski and Duane having an expired license Buddy decides he doesn’t want to be there anymore and starts pulling towards the biggest, most tattooed (not in a good way), dirtiest, scariest family I have every seen (remember he’s in his service vest, completely not acting like a service dog).  He starts licking the kid – who is across the aisle – so people are lining up waiting for me to get him out of the way.  He then decides if he can’t play with them he going to pull the wheelchair and himself into the aisle.  

At this point I think the DMV lady realizes that we have some issues on our side of the counter and becomes nice and hurries through my name change paperwork, my car paperwork, Duane’s jest ski paperwork and within a few more minutes I am paying and we are out!!  (But not before we get stuck on the lip going out the door!)

It’s always and adventure!

– xoxo Victoria