Team Rhyser...ASF Walk-a-thon

 

Angelman Syndrome has taken us on one hell of a ride…
but we can tell you this though…
We have changed. Our eyes have been opened to the broad spectrum of beauty, the value of uniqueness and the amazement of the common thread that binds us all regardless of the color of our skin or the makeup of our chromosomes. How could I not have been aware of this magic?
We are grateful for the pain that propelled us forward, without it; we wouldn't have known the joy of this place.
So I am thrilled to be taking part in our very first ASF walk. I won't walk alone, but with some very powerful women by my side. I will walk proudly with Rhys, because I know what this walk can do.
The One Step Closer ASF National Walk has been a vital source of funding support to the Angelman Syndrome Foundation since its initial launch in 1999. What started with one volunteer walk site has grown to now include 29 walk sites across the country and is recognized as the signature fund-raising event for the organization. By supporting the National Walk we are helping researchers at ASF move one step closer to improving the lives of those impacted by AS through information, education, resources, support, advocacy and research.

Let me say that more clearly. The mission of the One Step Closer ASF National Walk is to create a culture that fully accepts and includes our little man.
We want this life-changing year to propel us forward…to learn and except. To work towards a cure. ASF works towards this, so we are thrilled to support their efforts.
Like many others who set out on this journey, we have struggled through a range of emotions. Support came though--through loving friends and family, through education, through falling in love with our son who turned out to be the greatest blessing and just what our family needed. We are learning more every day, and, through Rhys, we've discovered a new world of acceptance and opportunity for the individuals in our world with AS.
So we ask you, our friends and family who have supported Rhys and our family…to help us and support the Angelman Syndrome Foundation. We are grateful for your efforts, and hope you will take great pride in the important difference that the funds raised will make.
Our fund-raising page can be accessed here, or the ASF button on the top of my blog.

Thank you...

Love, the Vian’s

Day 307...The State of Our House"

"You should see my house" has been my compliment comeback of choice for some time now because first, it's true--some area of my house is, at any given moment, likely to be in shambles--and secondly, I've wrongly assumed you're always supposed to shoot back compliments with some stupid self-deprecating statement. Just because someone tells you they like your shoes doesn't mean you have to cancel it out with how disgusting your kitchen counter looks. It's okay to own a compliment and not everyone needs to be spoonfed the fact that if a woman is pulling it off in one area, there's another area falling apart. I'm now assuming this is a given, and from this day forth, any success in my life comes with the disclaimer that somewhere, something looks like hell. And if, by chance, it doesn't, don't say anything 'cuz, God forbid, you'll jinx a miracle.

The thing is, I'm not a good housekeeper, and snapping back with a forced laugh and a "you should see my house" is getting old. I'm tired of using heaps of wrinkled laundry for toss pillows and tripping over race track pieces scattered like shrapnel across my living room floor. And I'm ready, when complimented on my red shoes, to smile and reply simply, "Why, thank you. Red's my favorite color."
But the house thing has gotta change. Sunday, Uncle J watched the kids while both of the parental units worked.  When I returned home I noticed a slight baby powder scent in the air but thought nothing of it...

"Holy S@#t, what happened?"

Two bottles of baby powder dumped on every surface in our bedroom.  Lipstick artistically applied to the 3 month old baby portraits...and each one blamed the other. 
And I say this all for two reasons. I feel like I get a lot done.  Therapist, cupcakes, craft projects, doctors, preschool...but there's always not-so-fun stuff that gets left out here. Cleaning house is one of many. But also, sometimes writing about something helps me overcome it, and it feels good in that proclaiming-New-Year's-resolution way to publicly sign a declaration of Hey, I have a problem and Hey, I wanna fix it.


I will never regret letting the house go to spend important time with my kids and that will never change. I couldn't care about fingerprints on windows if I tried (in fact, I kinda like them). But, there has to be a happy medium, and a sofa slip cover made of wrinkled t-shirts is not it. I'm confident in the fact my kids will grow up in a relaxed environment knowing we chose Candyland over dishes, but I also want them to feel the security and comfort that comes from order and the beauty of aesthetics. Besides, clutter in the home inevitably interprets to clutter in the mind, and I'm a better mama when I make efforts to avoid chaos and attempt simplicity.

Now I have to get these two on board with me, that is once the baby powder settles.
 So, I'm going to try really hard to change this problem. This week, I'm weeding out, tidying up, and reorganizing some priorities. For my family, for my kids, but mostly for me. Because I'm really good with new challenges.

But oh, you should see my house...it smells baby fresh!

Day 302...Happy St. Patrick's Day!

St. Patrick's Day is a much needed day to let down our hair and have some fun.  After spending Wednesday morning at the ER...Rhys and that damn fever...we are ready to party like we are Irish. 

In my quest to be ever more domestic I decided to attempt a layered, rainbow, jello salad.  Who screws up jello...ummm ME.

This is what I was going for:

This is what I ended up with.  Are you laughing Mom?

 

Oh, well.  "Lucky" the Leprechaun still came, brought us Lucky Charms and some gold...and took off.
I guess I'll leave the jello salads to Grandma Rene, she's a pro.  I will attempt green rice krispies in a moment.  I shall not fail!

Happy St. Patrick's Day! 

P.S. Rhys is now doing better, fever is holding at 101 (much better that 104.9!), mostly due to the double ear infection and burst eardrum.  He's the toughest 16 month old I know...

Day 296...Stupid milestones

I know it's been awhile.  Sorry.  Life again has been hectic.  The Vian family has succumbed to the  lurking viruses in the air.  It hasn't been pretty.

So I  had this great preface to this little story in my head this morning. It was eloquent. But now it's late afternoon, I'm fresh out of energy (and fluids for that matter), so I'm going to write thoughtlessly...but heartfelt.

Last night as I put away the kids laundry, alone upstairs, I was just thinkin'. Nothing important...just stuff. 

And then I had a visitor.

And I turned to see my boy...joining me in his room.  Up 14 stairs...all by himself. Cause he's strong!
You might think climbing the stairs isn't a big deal.
But it is.

I remember the day McCall and Bodie took thier first steps. And how we clapped and cried, celebrating another page turned in the epic novel of our life. It was a very big deal, indeed.

And I remember the day we heard the words "delayed milestones" and how we thought that would be very, very hard.

I hardly ever think about "delayed milestones" anymore. I like the way he skids his belly across the floor to crawl, the way his body forms like putty in my arms. And though every once in awhile, I wonder if he knows he can't quite keep up like the other kids--and that question alone saddens me--it is fleeting, turned off with a powerful switch I control. But, you know when I think most about delayed milestones?

...when he nails them. Boo yah!

It is beautiful. The proud smile, the echo of clapping, the way his sister and brother run to pat him on the back and sweetly chirp "Good job, Rhyser" or that tiny little second I share with Rob...when our eyes meet and smile and blink back a tear or two because we share the fact that he is ours, and he is growing.

When they tell you your child will have delayed milestones, it means less that you will struggle and ache for those events to come but more that when they do come, your heart will leap, your soul will celebrate and your arms will stretch to hold and kiss the growing one that forever surprises you.

We celebrate climbing of stairs like it was walking first steps. Those aren't too far off.  He knows he's strong now. He's aware of his capabilities. And we will continue to encourage that awareness, applauding and praising the ever present gifts our littles possess.

And, in this moment, I am reminded of some of the best advice I've received this past year.

"Put the Angelman Syndrome books away. They'll be there when you need them. Instead, go out and buy a copy of a book you'll find more useful. Dr. Seuss' Oh, the Places You Will Go."

My sweet kiddos. You are capable, you are loved, you are celebrated.
And oh, the places you will go.