Jedi'd

"Mom, now it would be so easy for me to beat the real Darth Vader." 

Wow, that's confidence. 

We finished off the Byard birthday season in style at Disneyland yesterday. Ben even got a "Happy Birthday, Ben!" from Mary Poppins in the parade. Super fun. 

I feel like I've got my life back today, but I'm minus one computer charger (thanks Theo, master chewer of cords) so I'll be back after a trip to the Mac store...

Happy Tuesday!

Game Changer

"Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work: you don't give up."

Anne Lamott

Buddy

Buddy Walk 2011 was a smashing success. We walked, we talked, stopped at the Koi pond, we ate pizza and did a little dancing. We wore shirts that that declared Ben as "The Most Interesting Man in the World". (Tagline: I don't often prefer to walk, but when I do, I Buddy Walk. Appropriate, right?) Ben reveled in the attention and I loved being around the greatest people in the world. 

 

Events celebrating people with Down Syndrome cross all barriers...social, economic, racial. I love complimenting parents on their adorable new babies and watching people in their 50's with Down Syndrome get down on the dance floor. It's truly a privilege to be part of this community. 

 

Buddy Walk 2012. It's never too soon to reserve your spot!

So Close

Look at my boy go! Get ready to party when Benners takes off on his own...

Chicks Dig Me

No front teeth and the world's nerdiest swim flotation suit, and yet, 

the ladies still love me.

Ben Loves Dogs

The bigger the better. 

Six

Oh Ben, last on the birthday circuit in the Byard house. But definitely the easiest to please. Since he has celebrity status at school, we decorated his wheelchair with a big bunch of balloons, had treats with his sweet class and he reveled in the attention all day. He got his favorite birthday dinner (carb loaded!) and a football cake to complete the pig out. Toys to play with, and Ben was one happy guy. 


I can't believe it was six years ago that we delivered this sweet boy. I remember the anticipation as they pulled him out, having prayed for his health and being so grateful to finally meet him. Every day since has been an amazing adventure that I wouldn't trade for the world. 


Love you Benners. 

Tuckered Out.

This is Ben's preferred sleeping position. Last night, I found him folded over on top of the coffee table at 6:47pm. Evidence of a hard day's play that included climbing slides at the park, sprinkler time followed by a mud bath in the yard, and multiple trips up and down the stairs.

Ben's wonderfully unique in how he's created. Sometimes it means falling asleep on the coffee table before 7pm. Other times it means that the stoic person passing by can't help but crack a smile at his "hi!" and pudgy hand wave. He's one of 400,000 people in our country that are wonderfully unique. 

Nella, Kelle's daughter from Enjoying the Small Things is celebrating her first birthday by raising money for the National Down Syndrome Society. Check it out here. I can't think of a more wonderful way to spend a few bucks today.  

Buddies

Did you know October is Down Syndrome Awareness month? Check out a Buddy Walk in your town. Spend some time learning a little more about Down Syndrome. Invest some time in the life of someone with Down Syndrome. I promise, you'll be the one who gains from the experience. 


I wrote some thoughts down in honor of the celebration. Just my experience, but read on if you want to know more. 

I have a son who sits at the “special” lunch table. You know, the one you know is there, but you don’t go out of your way to stop at. Growing up, my visions of myself as a mom included me sitting in the bleachers watching my son play football or baseball. Or maybe, worst-case scenario, watching him play in the marching band. But I was never the mom of a kid with a disability. It never even crossed my mind.

Read more »

Hello Kindergarten

We experienced something incredibly holy today. And I have the feeling this is just the beginning of these experiences with our Ben. Ten special kids graduating into the next big phase of their lives. A graduation that symbolizes countless hours of hard work to learn, to grow, to develop. 

Ben gives so much of himself to do the things that come so easily for the rest of us. Every small step, every word, every new thing he understands takes determination that most of us will never understand. 

Being in the class today, I was touched by how every person in the room was so committed to Ben's success. When he walked out (with John's assistance) to graduate, the whole room erupted with cheers. As he enthusiastically clapped for every graduate, the other parents laughed and clapped along with him. I realized how much he has affected every parent, every kid, every teacher, every therapist he has contact with. 

It's such a privilege to be this boy's mom.

Listen Up

Ben's got his gear. Functional, yet fashionable, blue hearing aids with sparkles.

Pretty good first day wearing them. I only had to say "no touch!" about 100 times, and put them back in 50 times. Tomorrow will be better, I'm sure.

He also pulled them off at Ikea and dropped them through the cart. I'm trying to not lose this pair in the first week, but there's about a 28% chance of that actually happening.

I also had one of those awesome IKEA moments standing in line waiting to get Lincoln out of the ball room (dirtiest place on the planet?) Picture this...

The IKEA lady is yelling at Lincoln to stop doing things she told him not to do

Several moms with kids in private school uniforms (nothing against private school, just setting the mood) are standing behind me in line looking clean and perfect.

One of the moms says to me " there's something spilling underneath your cart". I look. I can't figure it out. No sippy cups, no starbucks, etc...

Another mom says "it's coming from his diaper." Yes, my adorable son with Down Syndrome is sitting in the basket throwing things out, with pee running out of his diaper, pooling on the floor.

I stayed calm. Said "well, that's a first". Took him to the bathroom for a diaper change, and finished off the evening giving the kids meatballs and mac and cheese in the IKEA restaurant. Mom of the year, me for sure.

Anyways, back to the point of this post. Ben, I'm so glad you can finally hear to your full potential. You're the man and you look super cool in your aids. Chicks love em.

Like it is.

Ben's almost a Kindergartener.

I guess I should stop referring to him and Bear as the "babies". He's making big strides these days. Maybe not with his legs yet, but with all of his adorable little heart.

His favorite activity is to scoot into his room, shut the door behind him, pull all of the books down from the bookshelf (he likes a selection) and look at them while singing to himself.

He loves when John comes home at the end of the day. John picks him up and Ben does a "face inspection". He touches all of the parts of John's face while talking up a storm. Ben especially loves the ears and cheeks.

Mostly, he just loves his life. He loves his family. He enjoys everything we do together. He has a smile and a "hi" for everyone we meet.

My life is less complicated because I have Ben. He teaches me how to live.

Two-Faced

This boy has not been getting enough face time here.

Mr. Personality has been keeping us laughing these days. Just for fun, here's a short list of Ben's latest escapades.

Farts, followed by a devilish giggle. Everytime.

Saying the word "circle" on command, but it sounds like gurkle. Awesome.

Eating noodles super fast. And sneezing a few out of his nose the next day. Nice.

Loudest kid singing "Rudolph" during our impromptu Christmas caroling. My boy.

Enough said. Cutest face on the planet.

welcome home!

ben is back! 

oh ben, we missed you in our house

harrison squealed all night from joy

even lincoln wanted to be in the same room with you

dad's blood pressure has almost returned to normal

and i'm happily blogging on the couch...

knowing all three of my little men are sleeping soundly in their beds

it's a good night 

weekend with ben

we've been spending labor day weekend at the children's hospital with ben...a nasty pneumonia right before school starts

he's doing much better today.

starting to get back to his spunky self.

here's to swinging again soon buddy 

ben's peeps

some of the coolest kids on the planet 

are at lost canyon this week

they enjoy their lives more than most

and they bring big joy everywhere they go 

i heart kids who hug, have soft hands and big hearts

Before and After

Here he is...tonsil free. Ben was a champ as usual. Very little complaining, barely needed pain meds, just needed one night for o2 and observation.

Nicely done Ben. You're a superhero.  

Four Plus

this boy has gigantor tonsils...on the "tonsil scale", one to four, ben's are a four plus. 

4+ = surgery  

so off we go tomorrow morning (6am) for tonsil time

the cool thing is that while 

he's out they are going to 

grab those adenoids too

put some tubes in his ears

give him a hearing test

and an echocardiogram. 

all things that usually go better on a sleeping four year old 

if you remember, say a prayer for benners around 8am 

hoping for a throat with more more room for breathing! 

no more snoring baby boy

doesn't ben look rad in his gait trainer? 

sand man

at dinner each night around the table we do 

"what's your favorite part of the day?"

well, ben's favorite part of the year, hands out

the beach

he has no concept that sand doesn't taste good 

or feel good coming out the other end...

three trips to the beach

sand-a-licious

First Trip to the ER

Wow, we made it to November before our first trip to the ER.

Ben woke up with the "junk", so we headed over to the Rady Children's Hospital ER, just 10 minutes away! 

We met Antwon and his mom in the ER. (sweet six year old with Down Syndrome and the "junk" too) 

Great, fast service...coffee delivery while we waited (speaking my language) and we were home by noon with some great drugs. 

Ben's been hopped up on steroids ever since.