Merry Christmas!

Merry Christmas! We are glad you are here. We have had quite a year…lots of ups, and a few downs. But we love roller-coaters…that’s how we roll in the Vian house!  After inviting some new friends and family here, to our little blog, I thought I should recap…

I started this blog in May after reading about something called Project 365. Simple. Take a picture a day for a year. I committed to doing so and I thought it would be a great way to look back on a year in the life of the Vian family.  But life caught up with me and I missed some days...oh, well I tried!  The first post is HERE.

At the time I had no idea where this year would take us or how therapeutic this blog would be for me . It has been a hectic year. A rewarding year. A challenging year. In this year we have grown, cried, triumphed and most of all laughed. We laugh a lot, and we like it that way.

So let the cheesy Christmas letter…or rather post…commence!

Rob started a new job in June with the State of Idaho, Department of Corrections. He graduated POST at the top of his class, and he is now an officer at the State Penitentiary that controls the visiting department at the prison. Because of this new job, he wasn’t able to coach high school football full-time this year. He made it to the field as much as his schedule would allow, but he sure did miss it. Soon though, Bodie will be ready for Daddy to coach him! 

I am still at the GAP, 13 years and counting, baby! I am slowly doing some online courses so I can apply to nursing school next year…fingers crossed. Mostly my days are full of laundry, dishes, chauffeuring, wiping butts and noses…but I wouldn’t trade it for anything! 

McCall started kindergarten in September. She has such a zest for learning and I hope that she always carries that with her. She’s our little Rembrandt. So artistic, so right-brained. Despite being quite a little princess, McCall loved camping this summer. She is a wonderful helper and big sister although she’s a bit of a tattle-tale, but with Bodie for a brother she has to be! We are so proud of her…and it is just hard to believe our little girl is 5 ½.

Bodie turned 3 in July. He is one of the funniest kids ever. He has no filter, no volume control, no off-switch. He has embarrassed us many times, especially in Winco! He loves football, I wonder why, but is the sweetest little boy ever. He has the most un-conditional love for his family, and I am so thankful for that. Bodie started preschool this fall, and *might* have a crush on his teacher. Bodie keeps us on our toes. We are either running after him, cleaning up after him or laughing at him! He is an amazing brother, and our family’s comic relief.

Rhys turned one at the end of October. When he was around six months, I just knew something wasn’t right. He wasn’t sitting up, babbling or eating and he was always having “tremors”. Everyone kept telling me that he was fine, just a late bloomer or perhaps just lazy. Third kids are like this I was told. I wanted to believe them, I really did. But somewhere inside of me, my mother’s instinct said that wasn’t it. Our pediatrician suggested we start seeing a physical therapist and he started doing very well. However, his tremulousness didn’t stop and he had a large seizure in August while I was feeding him. I hate to say I am thankful for that seizure, but I am. It got the ball rolling, it made people believe me and it led to his diagnosis. Some of the posts from this time can be found HERE, and HERE.

We had MRI’s, blood tests and doctor’s visits for months. Finally, on over Labor Day weekend we got the call. A deletion of chromosome 15, resulting in Angelman Syndrome. I always knew it was something, however my world was rocked to the core, and I was sure life as I knew it was over. (That post is HERE.)

How wrong I was. Between the outpouring of love and support we received, some hardcore life analysis and therapeutic insights I made on this blog through it all, I have arrived at the very beautiful place of Life is hard. But it's also amazing, and we will rock the hell out of it.

Things are going well. There are emotional breakdowns here and there, and there are times where I suddenly realize...what just happened? ...but mostly there is so much love. Not everyday is unicorns and rainbows, but the majority are! For the most part, I'm really not scared anymore.  I am truly happy and overjoyed and experiencing all the beauty and laughter and soak-it-up-ness I expected.  And writing about him and taking pictures of my CRAZY kids is helping incredibly. I so believe in the whole "Go Big or Go Home" philosophy.  And we are GOIN’ BIG, baby!

We are embracing our new path with open arms. Rhys has a wonderful team of therapists and he is doing fantastic. I don’t even listen to the doctors when they say “He won’t do this, or he might never do this”, because he has already proven them wrong so many times…I fully expect him to give the theoretical middle-finger to these guys someday—and that makes me smile!  He is popping himself up, cruising along furniture and wants so badly to be like his brother and sister. His seizures are almost completely controlled though medication. Rhys and I will attend our first Angleman Syndrome walk in Philadelphia this May with my mom and aunt. Life has challenges. Life teaches you things. And life is all how you look at it. We are a happy family who loves life. 

We wish you a very Merry Christmas. Enjoy it with those you love. Make the most of 2011…we will!

 Love,

~the vian family

Day 211...Chocolate Therapy

So I've started this post a few times but just keep pecking at the backspace key because it all sounds so cliche' in that December venting kind of way. Like there's so much to do and I can't keep up and oh how I'd love to shut the phones off, call in sick to work, watch a movie and knock off a batch of sugar cookies. But that doesn't distinguish me from any other woman on the earth right now. Hence the backspace.

I tried writing about something else but accidentally hit Caps Lock and, by the time I realized it, it was a nice long paragraph. A paragraph that looked like I was shouting. "We had an interesting day" comes off as really in-your-face when you write it WE HAD AN INTERESTING DAY! So I deleted that too.

So now I'm back to where I started.  Bodie and McCall are singing "Old McFarmer" in the background, and no I just don't have the heart to tell them its actually "Old McDonald".  Just a post about the crazy radomness that is December.

I was kinda feeling overwhelmed--the kitchen is shot and the laundry is heaping, presents aren't wrapped, husband is leaving on his vacation (to Las Vegas, don't ask :) )...but then Rhys's occupational therapists came over today to help us with some feeding issues.  We had fun.  Lot's of messy, learnin' fun!

He played and ate, making a HUGE mess along the way.  Then the therapist said, "Wow thank you for being so open to trying this.  I know its messy, but it teaches so much." And I thought....why wouldn't I be open to this.  He is having fun, and eating chocolate pudding.  Isn't that what December is all about?  Eating and chocolate? (...OK maybe some other things too.)
And maybe this sounds all unicorns-and-rainbows, and yes it sucks that I even have to preface this with that statement...but, really, does stopping to realize just how much you love chocalte pudding squished between tiny fingers have to be cliche'?
I love that making Christmas meaningful is a lot of freaking work.  But somewhere between staying up to stuff a stocking and slopping frosting over a Christmas cookie...somewhere between all of it, you feel this rush of "this feels good." And it's worth it. It's worth it because your kids are laughing and you're trying to hide your own smile and it's so not glossy or magazine worthy but because of that very fact...it is.
 
My heart is happy. Busy and overwhelmed at times. Frustrated and a bit sad once in a great while. But, most of the time...it clocks out content. And for that, I am grateful.

Day 200...it's beginning to look a lot like Christmas!

We have had a busy week filled with half-birthday's (McCall), snowmen, sickness, laundry, doctors and Christmas decorations...just to recap!

The kids helped as I put up some Christmas trinkets.  I love that there is snow on the ground.  I love it even more that the kids seem to love the snow just as much as I do.  They built a snow-Bodie, then knocked him down.

Then they took a break with some Dr. Pepper. 

Rhys had another neurologist appointment this week and I am so excited to announce...hold on to your seats...he has tipped the scale at 20 pounds!  Yes 20 lbs.  His seizures are still not controlled as well as we would like, so we added another anti-convulsivant to his daily regimen...and so far so good.  The past 2 days he has only had about 3-4 seizures, compared to the 3-5 an hour before the new medication.  So as usual...he's happy!

Well, more snow to shovel...

 More fun to be had...

Day 193...Friendly the elf

Well, I survived my 13th Black Friday at the G.A.P.  It was madness!  Thanks to our "manny" (aka Papa) for watching the kids. 

On Friday night the kids got a surprise before bed. As they walked up the stairs they saw The Elf on a Shelf.

"Friendly" the elf is the moniker the kiddos gave him.  As the story says, Friendly was sent from Santa and each night he magically flies back to the North Pole to report to Santa who was naughty and who was nice.  Then each morning, he is somewhere different in the house for the kids to find.  You cannot touch Friendly or he will loose his magic!  I'm not sure who is going to have more fun with this...me or the kids.  (Thanks Auntie Amber for the recommendation!)

On another note...In some of my research of Angleman resources and news, I stumbled across a video of a family who's son Ethan also has the syndrome.  It has some harsh realities, and some positive thoughts, but also does a good job explaining in a nut shell the basics of AS.  I thought some of you may find it informative.

Angleman Syndrome NBC LA

Day 191...Happy Thanksgiving!

I love Thanksgiving. The linens, the dishes, the food, the chaos, the football, the heat in the kitchen, and the fullness at the end of the evening.  Thanksgiving is a teaching holiday and I wonder how to teach the kids how to be grateful.  We went to the library and got Thanksgiving books, they learned about it at school...but how do I teach them to be grateful in their everyday lives?

I think the true meaning of gratitude arrives on its own. You can't try too hard to create it; you can't stress too much about conveying it. Oh, we'll read the library books. We'll talk about Plymouth and Spanish explorers and throw out fancy phrases like "bountiful harvest" that will leave their little eyes crossed, clueless and confused. We'll take turns sharing what we're thankful for this year which will range from less original but still valid answers like houses and jobs to the more emotional blessings of little Rhyser and the tiny soul that changed us. I'll most likely cry and then pull it together. But still, that's not the heart of it. That's not the meaty core of Thanksgiving...the kind I want my kids to grasp and feel.

It will come somewhere in between...when no one's watching. Right when the kitchen's crazy and the gravy's boiling and the football game is roaring and hands are being washed and kids are being prepped and hotpadded dishes are being carefully carried to the table. And someone will holler for everyone to come, and I'll watch as conversations are wrapped up and bibs are fastened and heads are tipped in laughter. And right about then, I'll want to grab my kids and kiss them, whisper into their ears...."This is Thanksgiving. This, right here, is being thankful. Take it in, kiddos. Take it in."

And then I just hope they get it. That over time, they know that they are blessed and that there are so many places in this world, in this country, in this town, where there is pain and need and hunger. And knowing just how good it feels to have it, you hope they give it back.  I know that this year has changed my priorities, my gratitude, my perspective on life...

So, yeah. I'm thankful tonight. 

P.S.  Bodie is very thankful for peanut butter.  It could be worse, at least it's a protein!

Day 188...The view from inside

It's warm inside.  Rhys and I are having fun watching the goofiness going on outside.  Bodie and McCall couldn't wait to get their little fingers in the snow...

now they can't wait to get back in.

Slippery, cold, gloved hands make it hard to turn door-knobs.  I could help, but this is so much more fun.  However, Bodie just said "Hey BORON  let us in, we're freezin.' "   (I may have called someone a moron ONE time...and he picked this up.  Whoops!) 

Day 187...The BIG three-one

I'm thirty-one...I said it.  It just so happens the mark of the end of my first year into a new decade comes at a climactic stretch of life for us.

It's taken me awhile to grasp it all, but I have finally arrived at the grown-up place of life is what you make it and there are lots of things in life we go through that aren't comfortable or ideal, but they could be so incredibly worse, and a simple life of comfort does nothing to change us, mold us, make us into better, stronger more beautiful versions of ourselves.

"humans are designed to seek comfort and order, and so if they have comfort and order, they tend to plant themselves, even if their comfort isn't all that comfortable. and even if they secretly want for something better."
~donald miller

So maybe I have been planted for too long and this little bit of discomfort will challenge me, in my thirty-first year, to push myself more toward new chapters in the story of our life.

Busy, chaotic, un-edited, non-spell checked chapters.  But they will be good chapters.

Yep, thirty-one and lucky.  Thanks to all for the birthday wishes.  I couldn't ask for a better group of family and friends. 

On a completely un-related birthday note...Rhys is just as naughty as his brother...well, maybe not that naughty, but...

he crawled up on to the dishwasher as I was un-loading it!  He's fast, and I'll let you in on a little secret...am so proud of his naughty streak :) Just don't tell Bodie!