life's too short

Brandyn got me hooked on the show The Walking Dead.  It's a crazy, brilliant show in which a zombie virus has infected the world.  One could take some wisdom from the show and realize life could always be worse...as in the instance of a zombie apocalypse. 

On a related note, I have been focusing effort on letting go of stress...happy thoughts, deep breaths and an occasional yoga pose help get me to a zen state.  I'm getting better (ever so slowly) at not caring about small stuff, telling myself "let it go."

This afternoon, this song came on the radio in the car:

Life’s too short to even care at all, oh
I’m coming up now, coming up now
out of the blue,
These zombies in the park,
they’re looking for my heart, oh oh
A dark world aches for a splash of the sun, oh oh
If I could find a way to see this straight
I’d run away
To some fortune that I,
I should have found by now
And so I run now to the things
they said could restore me
Restore life the way it should be
by Young the Giant


******

I turned the volume up to an extreme level, rolled down the window and for five minutes life was simple.

Around Town

Brandyn has a crazy work schedule, making it next to impossible to go out together. A fix to our problem? Lunch dates.

We got tired of the same old lunch spot so we are mixing things up by hitting different places around Portland...tour the town one spot at a time. We went to the infamous Voodo Doughnut last week. I recently stopped eating gluten (because my stomach is revolting against me) but thought it wouldn't hurt to cheat for a day. I hadn't eaten more than traces of gluten in almost two months. So when I entered the shop, I went crazy over the thought of sweet dough and bought more than could possibly be consumed.

These were yummy, gooey goodness that only made me feel sick for two days.

Totally worth it.

My favorite...the jelly filled voodo dolls.

Brandyn unknowingly bought a fritter the size of Texas. Even in my haze of gluten high, I could not eat more than a bite of that thing.

We have to fit in as many dates as we can before June, when Isiac's summer break begins. During the summer our "dates" revert back to rented movies and microwave popcorn.

Hello Sunshine

I stood in our backyard for a while today to soak in some vitamin D.

The sun filtered through the huge tree in our backyard.  It's a lovely tree. But being the catostrophic obsessor that I am, all winter long I worry about it falling on our house. That sort of thing happens in Oregon. However this winter our tree had no reason to fall, destroy our home or injure anyone. If spring isn't crazy I can put this particular fear in the back of my mind until next winter.

My heart goes out to the people effected by the crazy weather in other parts of the country.

Hit Me With Your Best Shot (or just hit me)

Isiac asked me if I could play the song and by ask I mean he sang the words "Hit me with your best shot."  To which I answered "Please No!"  I then explained how I grew up in the eighties and while some of it was great,  it was chuck full of bad clothing, ridiculous television and a lot of horrible music.  I don't know if Pat Benatar fits into the horrible category altogether, but I have heard that song 562,180 times in my life - more than enough to never want to hear it again. 

There is plenty of what I consider good music from the eighties in our collection of iTunes.  I just downloaded a few songs by the Psychedelic Furs recently which would enrich Isiac's life in countless ways.  But his music tastes take after his father - much of what he listens to makes my ears melt closed in an act of self preservation.  So I came up with the idea, to keep harmony in the home (to keep me happy), music of questionable taste must be listened to while wearing headphones.

I just noticed I would make an awesome dictator.  I wonder what that pays.

Neighborhood Watch

 

Brandyn and I passed this steakhouse sign yesterday.  I thought it was hilarious...a huge, very rare steak.  There are odd things in the part of town where we now live.  Like the kiosk on the Village Inn announcing "Flu Shot Wednesdays."  Get lunch, pie and a shot all in one sitting.  Crazy sites make for good entertainment as we drive places in the neighborhood.    

On a different subject...Isiac's DMD doctor's appointment was last week.  Nothing to report, which is good.  However, the information about what will be happening was hard to sit through.  The Orthopedic doc went into detail regarding the optimal window for Isiac to have back surgery (if/when he needs it).  That talk freaked Isiac out and it gave both Brandyn and I a stomach ache.

The main issue with Isiac having surgery is his lung function.  The Orthopedic doc told us we shouldn't worry until he's in the 30% to 25% range and a 4% per year decline in lung function is the usual. He looked a little concerned when we reminded him  Isiac is at 67% right now and has declined about 10% a year for the last three years.  Doing the math on where his lungs might be in three years is not good.  

And then the Neurologist came in the room, along with three interns.  He wanted to make sure we knew about all the research for treatments happening right now.  I do know about the research and I tried not to sound impatient with him as I pointed out none of it applies to Isiac's exon deletion.  

His doctors are really great and they both do a lot of good in their field.  But there is nothing to do for Isiac but wait and watch (and have fun, be happy and ridiculous whenever we can). 

Snow And Rain

 

This winter brought a bit of snow to our area.  I had to go out the night the snow began and I prepared for the sick feeling I've had with snowfall for the past few years.  But that sick feeling didn't happen...instead I noticed how beautiful it was.  I drove slowly, enjoying the fat flakes falling on my windshield.  It was amazing.

I feel wrapped up in life's circle today.  Yesterday my sister got engaged, beginning a huge chapter of her life.  I was excited for the possibilities that lay ahead for her.  The news took me back to when Brandyn and I were engaged.  We were so involved in the experience of falling in love.  We were naive to how hard life could possibly become - stupidly in love.  I'm so glad we had that.

Today brought the passing of a family member on Brandyn's side.  The sadness has amplified the wide-open wound of loosing Brandyn's sister and the heart crushing future Duchenne Muscular Dystrophy has for us.  The afternoon has been occupied with tears welling in the bottom of our eyes (and a more than a few falling too).

The person my sister in law was is permanently etched into who I am.  I miss her every day and it feels strange that we are continuing life with her gone.  And there will be a day when we will have a loss too big to comprehend.  How strange life will feel after that?

This post has little to do with snow and rain but it all feels connected right now: getting past the stomach ache over simple snowfall; bliss in the beginning of things; the impact of loss. 

I've been listening to a song on repeat...

Your ship may be coming in
You're weak but not giving in
To the cries and the wails of the valley below
Your ship may be coming in
You're weak but not giving in
And you'll fight it you'll go out fighting all of them...

song by Rilo Kiley

Along The Way...

My last post was prior to a doctor appointment for Isiac...that appointment was rescheduled for the end of February.  Rescheduled appointments are a relief for a few days then I remember I'll just get freaked out again about two weeks before the next appointment.  My brain files it away as a "To Do."

I've not gotten along well with my brain for years now.  Its "To Do" file is packed with scheduled freak outs over future events.  And when I'm not in panic mode, my state of mind simply downgrades to anxiety then depression.  I work to keep things in some sort of manageable balance.  But grief getting stirred into this mental medley has made things more difficult.

*********************************

Yesterday I read a synopsis of a movie I want to watch soon which speaks to how nature changes life.  It's an appropriate movie for this point in my life, where I feel experiences and nature have changed me and my family immensely.  There is so much distance from the person I was ten years ago.  I don't see the changes as bad (although some might disagree), I see myself as someone in a continual flow through this journey.  I would say one of the greatest transforming influences for Brandyn and I has been loving Isiac.  We experience constant converging streams of happiness, laughter, grief, frustration, pain and joy.

*********************************

Ten years ago, appointments overwhelmed me.  Now they just throw me off a bit...all those years of life have not resulted in a completely balanced mind.  But the years haven't destroyed me either.

Friday On My Mind

Isn't this complete sweetness?  I caught Isiac right as he looked up at me, before he realized I was taking a photo...before he got the chance to contort his face into a photo-mocking expression.

His legs have recovered from falling.  No more screaming in pain...and oh my word, that is such a good thing.  He has an appointment with his Muscular Dystrophy doctors on Friday.  I keep assuring myself it will be fine, nothing will need to be done.

I'm on a streak of paranoia this week.  One of the Duchenne Muscular Dystrophy boys I follow through a blog had surgery just a few days ago.  It wasn't revealed what kind of surgery, just one that would "hopefully prolong his life."  It was most likely spinal fusion surgery, the surgery Isiac may have one day to straighten his spinal curve.

Since learning Isiac has a progressive spinal curve, I dread his checkups.  A couple weeks in advance of every checkup, my mind repeats an "everything is OK" mantra.  As if I have any power over the universe.

Friday morning, I will drive Isiac up a winding hill on the west side of town to his doctors.  I will be calm, hold his hand and smile at him as often as I can.  I will assure him everything is alright (even though I know it isn't and the checkups are with doctors who can't do a thing to stop this disease), as I have done every six months for the past six years.  I'm almost a pro at it now.

Homage

December was my time for a phone upgrade so for Christmas, I got an iPhone (yay!).  I was sitting next to Brandyn while we scrolled through the accessories.  I saw this case and had to have it:
 

Not because it's girly and purple. No, it's because when I saw it I squealed in a pitch way too enthusiastic to be normal, "Put A Bird On It!"  (a phrase from season one of the IFC show Portlandia)

I love that show.  I love my bird-clad phone case.  It's the little things.

And by the way, season two of Portlandia has Brandyn and I saying "We can pickle that."  Because we're dorks.

New Entertainment (sort of)

Awhile ago, Isiac started watching the Simpsons.  He's asked to watch episodes before, but until recently I figured he was too young for the show.  For my own sanity, I should have kept  that door closed.  I am now routinely plagued with clips, YouTube videos and entire episodes of a show that revolves around animated yellow people telling butt jokes. 

 This afternoon, he begged me to watch one episode with him.  It was a long 30 minutes. 

But it made him so happy when I gave in and laughed along with him.  

 Now I have to admit I laugh at butt jokes.  The things I do for this kid..