Randomness in the New Year

What a way to ring in the new year...knee deep in throw-up and...well you get the picture.  Yes, sickness has again hit us.  And by "us" I mean Rhys and I.  We are lucky...sarcastic lucky.  Like run away as fast as you can if you are with us in a lighting storm...run fast the oppisite direction.  We promise not to be mad :)

Anyways...I *think* we are finally on the mend.  We even ventured out yesterday and Rhys was back to his ol' self...

  note to self...his arms are growing at least an inch every day so nothing is safe...even pushed all the way back on the counter...Target popcorn included!

Which brings me to another point.  I now have another excuse to LOVE Target. If you were browsing through  the Target ad last Sunday you may have passed right over the adorable little boy in the bright orange shirt smiling at you on page 9!  And if so, I’m glad!
 
The reason I’m glad?  Well, that stylish young man in the orange shirt is Ryan. Ryan just so happened to have been born with Down Syndrome, and I’m glad that Target included a model with down syndrome in their typical ad!


This wasn’t a “Special Clothing For Special People” catalog.  There wasn’t a call out somewhere on the page proudly proclaiming that “Target’s proud to feature a model with Down syndrome in this week’s ad!”  In other words, they didn’t make a big deal out of it.  I like that. 

While Ryan and Rhys have very different syndromes, it still moves me.  Even though Target didn’t make a big deal out of the fact they used a boy with Down syndrome as a model in their ad, they said plenty. 

1. They said that kids born with missing or extra chromosomes deserve to be treated the same as every other other person on this planet.
2. They said that it’s time for organizations to be intentional about seeking creative ways to help promote inclusion, not exclusion.  (It’s no accident that Target used a model with Down syndrome in this ad; it was an intentional decision.  If want the world to be a place where everyone is treated equal we can’t just sit around and watch the days tick away.  We have to be intentional.  We have to do something.)
3. They said that companies don’t have to call attention to the fact that they choose to be inclusive in order for people to notice their support for people with disabilities.  In fact, by not making a big deal out of it they are doing a better job of showing their support for the special needs community.
4. They said it’s important for the world to see people born with disabilities with a fresh set of eyes.  That it’s time for us to lay down all the inaccurate stereotypes from the past and move forward embracing the future with true and accurate ones.

So thanks Target...I'll give you my money any day!

OK...back to the New Year.  2012 is going to be grand. I've been thinking about resolutions--because that's just what you do this time of year. I want to find more ways to let the people I love know I appreciate them. I want to let go a little more--of fears, of insecurities, of the things that hold me back. Wild and free, Baby. Wild and Free.  So Happy New Year!

The Incident

So, let's see--it's T-minus-six-days, until Christmas so I should be ready and enjoying the season, right?  Wrong.  Really I have so much left to do, am slightly freaking out and…I know it sounds paranoid but The Little Drummer Boy song is stalking me.  Every station, every store, he’s everywhere and I can't bear to hear "Pa-rum-pa-pum-pum" one more time. We get it. Your drum makes a noise.

Anyways...I can finally try to pull myself out of this holiday rage now that work has settled down.  Who knew that the President of Gap Inc. would want to shoot the shit about Boise State Football?  My boss nearly died, and I just rolled with it.  Good thing I know a guy who taught me a thing or two!

Rhys got some chocolate while the kids did gingerbread houses...and no seizures!

We are have fun with “Friendly the Elf”.  He made his appearance last year and the kids couldn’t wait for him to come back.  However, we did have an incident. 

Rob’s parents are visiting for the holidays.  Papa Bob wanted to dip into the candy dish, which happened to be where Elfy had landed for the day.  All the sudden a blood-curdling scream, the kind that makes the hairs on the back of your neck stand up and prompts an instinctive reaction of Bolt and Get to my Kid. You would have expected blood. "I thought a poisonous snake bit her," my father-in-law admitted later. Rob called me at work and said, “We have a problem.”

So when I got home McCall was being so brave and trying not to cry.  

“Tell me what happened McCall”, I said.

"Papa Bob....Papa Bob....(gasp, gasp)," she couldn't finish.

"Papa Bob what? Papa Bob WHAT?" I insisted.

"Papa touched the elf."

And this is the point I admit--having an elf might very well @*!# up your kid.

I responded quickly and (ir)rationally. I drafted a letter from Santa, on his own stationary of course, which had “magic dust” (glitter and sugar).  Santa instructed her to sprinkle the dust on Elfy so he could get his magic back.  Turns out it worked, because this morning he was taking a marshmallow bath in the bathroom!

 

"This is ridiculous," Rob mumbled and laughed. And I know he's right, but I wanted to save the magic. I mean, you should have seen their face when I made elf donuts the other day (cheerios with sprinkles).  They smile the biggest smiles every morning every morning when they find him in a new spot, and there's something so beautiful about the power of imagination--the ability of a really good story to add wonder and magic and tradition to our Decembers. But I also don't want my kids to end up in Christmas therapy someday. 

Mr. Pouty Pants.  He wasn't ready for me to take a picture :)

 And that's how Christmas magic is reinstated after a small elf disaster. The End.

 

FAST Gala

When everyone else was watching the BSU game Saturday night, I was streaming the 2011 Foundation for Angelman Syndrome Therapeutics Gala...live from Chicago.  It's not that I don't love me a lop-sided Bronco game, but I simply had to tune in to hear fellow AS parent Colin Farrell.  He was the guest of honor and so inspiring.  It is a blessing to have a celebrity with a voice...and his message was simple and clear.  "Hope reigns supreme." 

FAST and their researchers are doing amazing things.  The Gala has so positive and hopeful, and makes me believe in my heart that someday soon my little man will be talking and walking and its because of this foundation that he will live up to his highest potential.

This article highlights the gala.  I would love to try to make it there next year...too bad I work retail!

FAST produced a video here.  It is 30 minutes long, but it moved me to tears to see other angels.

Why am I boring you with this?  Well, if you, like me, have nothing better to do next Saturday night tune in because the 2011 FAST Gala is being filmed by NBC and aired PRIMETIME on NBC at 8pm.  Bob Costas is featuring 4 charities around the country, and FAST is one of them!  It is so exciting that awareness is being grown.

So thanks for reading.  Thanks for bringing awareness by supporting our little man.  Thanks to the family and friends that surround us on this journey...I am forever grateful...and hopeful!

Sickness has left the bulding...hopefully!

Randomness to follow...

What a week it has been.  We graced St. Luke's ER with our presence twice...and let me tell you if you go on a Friday night it is very interesting.  Rob was quite amused with the drunk man in the room next to ours...who won the highest blood alcohol level of the night at, wait for it, .4! Holy crap how do you get that  drunk?

Rhys had a horrible case of croup and a nasty fever to go along with it.  Unfortunately, when Rhys gets a fever it also contributes to horrible seizure activity.

Long story short, our neurologist prescribed a great drug that has been controlling his seizures phenomenally well.    The second ER trip sent us home with a home nebularizor treatment, inhaler and steroids for his lungs.  Rhys struggled with his body temperature and was a clingy, sad boy for a good week....but I can now say he is back to his old self.  Thanks to our "village"...you know who you are...for all the well wishes and support.

I can't update without a picture, so here is my birthday and anniversary present.  I begged for family pictures and I recieved.  They are more than I could ask for.  If you have ever tried to take a picture of Rhys you know it is not an easy task...and our photographer came through.  I'm so happy to have pictures of all of us!

Lastly, in case you are interested, some of you like to hear new things in terms of Angelman research...this is an informative and encouraging article I came across.  You can find it here.  Someday,  my dream might just come true.  To hear my little man say" I love you Mama"...I can't even imagine!

Boo

I must have answered the "how much longer until we trick-or-treat?" question seven times at least yesterday, and the sugar buzz from the Almond Joy's I pocketed from Mom and Dad's is finally fading.

But, here we are--the first of the end-of-year holidays, and I am drinking it up.  What a treat it was (no pun intended) to have the whole family be able to participate.  ROB...yes ROB...had the night off and was able to assume the wagon puller position.  I miss having him around to participate in these things with me.  He is my partner in crime and it was amazing to celebrate as the Vian party of five.

My little night owl

She's a nice witch

We all know that I am in love with holidays. I dig the whole over-hype and sparkle of decorations and Target setting up a small city of Christmas aisles the day after Halloween. I buy into the great to-do of kitschy bathroom towels embroidered with snowmen and freaking pinecones, and once one holiday is over, I am settin' up the excitement shop for the next one around the bend.


I fly my holiday freak flag proudly and am finding more and more ways to unfurl its enthusiasm on the in-between too.  It is just so much fun with these guys.

Bumblebee and his brother

But today the call for a clean-up is here and I am hoping for a quick decrescendo for my sugar buzz, I am grateful both for a fun night and the fact that it won't happen again for another year. That's the beauty of holidays...absence makes the heart grow fonder.

It's November, Friends. November.

Rhys's 2nd Birthday!

I don't even know where to begin.
And so I sit here, just staring at the screen, wanting so badly to be able to take this storm of feelings and find words that are worthy.

 For starters, we'll use Bryan Adams'.   Yep...I'm going there.  Because these words are playing everyday I grab little man out of his crib...the moment I pull him close and kiss his head.

When you love someone, you'll do anything.
You'll do all the crazy things that you can't explain.
You'll shoot the moon. Put out the sun. When you love someone.


Rhys's 2nd birthday was a bit like his actual birth day--planned and prepped with anticipation of perfection. But like all things Vian, planning and prepping just doesn't make a difference.   It wasn't the way it was supposed to go but, turns out, it really was.








And while the house wasn't quite as ready for a party as I planned it to be...everyone came together and made it work (thanks Dad!). We had our village and our family. And that's all I ever need.

The rest is...well, cake...no carb/no sugar of course!

We all know what a birthday means.  A second birthday means he is no longer a baby, but a toddler. It's a medal of honor, a celebration, a flag at the peak of a summited mountain. It is a memory of that very day, and it is bittersweet. Mostly sweet, and a tad bitter...I struggled with the fact that Rhys didn't really comprehend that it was his birthday...his special day...and I hate that.  Like hate in the strongest sense of the word...it pisses me off.  Everyday is a funny, magical day to Rhys and I love that about him...but on his birthday I couldn't help but think about McCall and Bodie's 2nd birthday parties and be truly ticked off at that missing 15th chromosome.  Comparisons are not something I generally practice anymore, and I'm a little disappointed in myself... but nonetheless I held him close and cried at 7:25am.  Because I can't forget--don't want to forget--that second that changed my life.
No more Debbie Downer, just a moment of reflection and weakness...I'm allowed right?  Overall, I searched for moments of meaning and found them. I mined my heart for any rawness, any unsettled grief, and I guess I wasn't prepared to feel a bit sad.  But mostly? Mostly, I felt peace and love and contentment. The events of last couple of years have been sewn together seamlessly with our present, and I hardly recognize anymore where the past shifts into right now.

Happy Birthday to our beautiful, magical, much-loved little-man!


I keep coming back to this quote today...thank you Pinterest (I admit it I am very addicted...an intervention might be needed.)

Awareness born of love is the only force that can bring healing and renewal. Out of our love for another person, we become more willing to let our old identities wither and fall away, and enter a dark night of the soul, so that we may stand naked once more in the presence of the great mystery that lies at the core of our being. This is how love ripens us -by warming us from within, inspiring us to break out of our shell, and lighting our way through the dark passage to new birth. ~John Welwood

Basking in new birth today. Two days into his third year, and it's going to be good.

Feeling blessed and in love and grateful for every experience that continues to shape our family.

Better late than never...right?

I know, I know.  The little ol' Vian Party of Five blog has been neglected.  It's been awhile...a long while.  But we have been busy.  In fact busy might be an understatement!
We took a much needed relaxation vacation to the cabin in August.  It was beautiful and we had so much fun.  Both Bodie and McCall even rode the tube while Papa pulled them.  Bodie wanted to go faster, faster, faster and McCall screamed the entire time!

McCall and Bodie both started school.  McCall is learning so much in first grade, she truly loves school.  While the transition to her new school was mostly good, there is a nasty boy in her class who really bullies the kids around.  Wait 'till Bodie gets ahold of him :)

I pick my battles...snow boots in August are cool ya know!

Bodie goes to preschool 3 days a week, yippee!  He has actually brought home paintings and crafts this year and I am so excited!  Bodie broke in the new carpet yesterday with it's first blood stain.  He tripped, thanks to his sister, and split his head open real good on the doorway.  Seven stitches later, he is good as new!  He never cried until they gave him the numbing shot, but McCall hysterically cried the entire drive to the ER.

Rhys is doing fantastic.  With the exception of a broken finger (mother of the year right here!) we have stayed away from the doctors and hospitals for the longest stretch!  His seizures are down to a random on here and there, thank you very much ketogetic diet.  And I'm very happy to report NO ear infections since the tubes were placed.  He is doing OK in his glasses, it is a battle sometimes to keep them on...hence no pictures to show :) You'll just have to see him in person to catch a glimpse of his specs. 

We celebrated, well maybe not celebrated but observed, the anniversary of getting the Angleman's diagnosis.  I cannot believe it has been a year, but at the same time it seems like so long ago that I got that phone call.  What a long way we have come in that year.  Rhys is so close to walking...he is getting used to his walker that his physical therapist brought over.  Seizures are controlled and sleeping is, well sleeping is something we won't talk about.  Rhys has made such exceptional progress and is truly a wonderful little man.  Thank you all, the support he has around him is amazing.

Let's see what else....oh ya, we are finally MOVED IN!  Still a lot of work to do, but we are living here and loving the new house.  Just a few minor kinks on moving day, like 2 couches that won't fit downstairs and 1 stuck in the storage room, but it makes for a good story.  My dad has put in so many long hours here, I'm so lucky to have a handyman on speed-dial!  Pictures coming soon...or stop by when your in our next of the woods.

Off to do some painting and unpacking...more to come later!