Help My Son Win an Adaptive Bike

Dear readers, I need a favor from you. This will only take 10 seconds of your time. My son Charlie is wheelchair bound and suffers from Cerebral Palsy and Epilepsy due to stroke. The thing our family wants more than anything is to be able to take Charlie on a family bike ride with us! 

Good news! Charlie is in the running to win an adaptive bike via the Great Bike Giveaway. This organization has an annual campaign to get adaptive bikes into the hand of special needs kids and Charlie is one of them! 

There are 600 children, each on their own special journey. The Great Bike Giveaway wants to fundraise enough to supply all 600 kids, but that might not be possible. So they are asking the public to vote for the kids. And the child with the most votes in each bike category will win their bike outright. HELP ME DO THIS. Click on the link below and scroll down past the "donate" button and go to the VOTE button. VOTE for Charlie so that he can win this bike. 

I can' thank you enough. 

Please spread the word via social media.

VOTE FOR CHARLIE HERE

This is the bike he'll win!

Isn't it wonderful?

The Upsee

Like most 3-year-olds, my youngest son, Charlie, is desperate to explore his world. And like most 3-year-olds, he is very vocal about his displeasure when his desires are stifled. But unlike his peers, Charlie's frustration is compounded by the fact that he has Cerebral Palsy and is unable to walk or talk.

In an effort to aid Charlie's mobility, my husband and I have invested a great deal of time and money in procuring all sorts of adaptive equipment for our son. Charlie has a wheelchair, a gait trainer and an eclectic assortment of leg braces. But we're really excited about our latest purchase - a simple but genius device called the Upsee. The Upsee is a walking harness designed to help non-ambulatory kids ket up on their feet.

For the past week, Charlie, my husband and I have all been learning how to use the Upsee. Charlie was apprehensive at first, but after a few attempts, he was off to the races. I cannot express my glee and delight at seeing my gorgeous boy upright and meeting the world head-on. This new piece of equipment is a game changer for Charlie and for our family.

Learn more about the Upsee HERE.
Learn more about Charlie and his journey HERE.
And if you have questions about it, please don't hesitate to contact me!

This Moment

I'm joining with Amanda Soule today for her Friday segment called {this moment}

In Amanda's words: A Friday ritual. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember. If you're inspired to do the same, leave a link to your 'moment' in the comments for all to find and see.

Help Charlie Heal

Art and Talking About Art

This weekend was a big one. It brought the opening of my first ever solo art exhibit and an interview with Hilary Walker of Our Style Stories. After featuring my home and studio on her blog last week, she followed it up with an interview for her Podcast. I've uploaded the interview to Soundcloud so you can listen below. Or you can go HERE and get it at the source!

Want to hear more from Hilary's guests?
Of course you do!

Subscribe to the Podcast below:

And now to the art! It's been a joyful process to create the Neuroplasticity art pieces and self-producing an art event has been extremely educational. I'm so grateful to those who came out for the event. The art will be on view in Snider Plaza through the 26th of November, so if you're in the Dallas area, please stop by! All proceeds from the art sales go towards Charlie's Medical Fund. Learn more at www.HelpCharlieHeal.com. And just for fun, here's a photo of Charlie, the little guy who inspired the pieces below:

Here's a note about the Neuroplasticiy collection:

The first image of my son I ever saw was an MRI. My husband and I peered into the terrifying scan and saw a black sea of brain damage. This was our baby boy and he had suffered a stroke.

Those first pictures of Charlie’s tiny beautiful brain were copied and reproduced and sent ahead to all of his specialists. Like an actor’s headshot in a program of a play we had yet to see, these images preceded him and shaped all of his first interactions with the world.

 Creating a thematic body of artwork inspired by Charlie’s struggle and triumph in the wake of his brain hemorrhage, Cerebral Palsy and Epilepsy has been a tangible way for me to take back those first images and process them in a dark room of joy rather than one of fear.

According to the MRI  -  11 x 14  -  SOLD

While You Were Sleeping  -  36 x 36

Eden  -  20 x 48 (pair)

Bloodwork  -  36 x 36

Mother  -  48 x 60

Place Your Bets  -  24 x 24 (pair)

Neuroplasticity  -  12 x 12  -  SOLD

Subclinical  -  24 x 36

Small Great Wall  -  16 x 16

In His Right Mind  -  24 x 24  -  SOLD

Synaptic Pruning  -  48 x 36

Neurogenesis  -  24 x 24

THe Healing Fields  -  36 x 48

Thank you to everyone who attended the art opening. We had 70 plus souls walk through the door and I am beyond thrilled with the turnout. Thank you for your support and interest in my work!

Charlie's wheelchair is on its way!

We're taking a break from usual programming here at La Maison Boheme because my son, Charlie is having a big week. As most of you know, Charlie is a stroke survivor who is fighting the effects of Cerebral Palsy and Epilepsy.  But mostly he's just a superhero angel baby who melts hearts with his piercing love-glance and leaps tall assumptions in a single bound.

Among other things, Charlie's speech has been a concern for our family.  We're all learning sign language and pointing at pictures and rejoicing in his small verbal gains. He sometimes says "mama" and sometimes says "dada" and every once in a while he'll pop out a fully formed word here and there. But it's nothing he's able to repeat and we usually watch that word come and go - never to hear it again.  But that is all changing this week.  Charlie has started talking!  Here's a little video for your viewing pleasure. (Make sure you turn up your sound!)

A while back, I posted my Christmas wish list and at the top of that list was Charlie's wheelchair.  Many of you darling readers have emailed me to ask if he got the chair within the insurance time-frame.  Thank you for your sweet and thoughtful messages! I'm sad to tell you that the chair did not come before the cut-off.

For those of you who are thinking, "what the hell is she going on about?" here's a little explanation.  I wanted Santa to bring Charlie's chair BEFORE the calender year was up.  Why did I want this?  Because if it was delivered before New Year's Day, our family would pay nothing - we had already met our out-of-pocket cap for the year. But when our insurance rolled over on the first - as it does every year - we would be on the hook for a few thousand dollars up front. As with most medical needs, help comes slowly and our chair is finally being delivered this Monday!  We're really excited to give Charlie the mobility and autonomy he so deserves. We had a loaner chair for one week before Christmas and it was AWESOME!  Here's a shot of my son, Walker, pushing Charlie around the hospital.

I am thrilled at Charlie's speech gains this week and really looking forward to seeing and using Charlie's new ride. It's going to be a big game changer.  The fact that it's going to cost eleventy-gazillion dollars (not really) is just part of life now.

If you're interested in learning more about Charlie or donating to his medical fund to help cover the cost of his chair, please click HERE.  And thank you darling readers for all your support and encouragement! 

Proud Mama

My son, Walker, turned five on Monday. He is a delightful, intelligent boy with a fathomless sense of compassion for others.  I seem to be in a continual state of awe at our complicated interactions, his acute perceptions and my inability to grok the fact that he's already five years old. Yes, he is surly, willful and myopic, but he is also a continual source of joy, humor and learning.

This week, I attended a parent teacher meeting at Walker's preschool. This collection of leaves was tacked to the wall outside the classroom. Walker wanted to make sure that I saw it and said, "Mama, each one is so different - just like people."

On Tuesday this week, Walker accompanied his younger brother to a physical therapy session where we tried out a wheel chair for the first time. (Why does Charlie need a wheel chair? Read his story HERE). Walker helped his little brother get situated and then asked if he could push him around the therapy center. I've not seen two happier boys in all my life.

Happy fifth birthday to the bravest, 

brightest and most connected 

little man I've ever known.

Walker - you're a gem.

Autum Equinox

Autumn is here. Charlie and I sat outside in the warm sun this weekend and played with some newly fallen leaves. It was a big week for us. On Tuesday, Charlie met with one of his many doctors and became the proud owner of a pair of orthotic leg braces - or as we like to call them, his Buzz Lightyear anti-gravity boots. They're going to help Charlie to work towards a standing position, which up until recently was almost impossible without his feet and knees giving out and collapsing.

I love fall. 

Its my favorite time of year.

Charlie

Today, my sweet Charlie and I are visiting the neurologist at Children's Medical Center in Dallas. Nothing to worry about, just a routine check-up to note progress and possibly tweak his therapy and long term goals. Our doctor is a sweetie-pie and will be THRILLED with Charlie's latest trick: sitting unassisted. 

When Charlie was born, doctors told us that the stroke was so severe, he may never sit up or roll over or crawl or walk or blah blah blah blah. But here are two photos taken over the weekend that prove otherwise. Isn't he a doll?  Obviously, being his mama makes me a bit biased.  But Jesus, LOOK AT HIM!  My heart is so full today.

Photos by Aubrey Power

UPDATE:

We're back from the neurologist.  

You can read about our appointment HERE.

xo

Sarah

Photos from the Kenna Cup

As most of you know, I spent the weekend at the Kenna Cup - a golf tournament hosted by Kenna's Kids, a non-profit organization that assists children facing big medical challenges. My son, Charlie is one of their three 2012 beneficiaries. I have no words to describe the overwhelming feeling of seeing the droves of golfers, volunteers, sponsors, food vendors, public servants, sports personalities, radio news people, bar tenders, and even parachuters who were donating their time and money to support my Charlie and the two other beneficiaries. We were surrounded by angel people all weekend who had one common goal: to ease our family's burden.  This morning as I write this, I am filled to the brim with tears of gratitude and hope. Thank you to all who helped make this spectacular weekend possible.

Below is a photo of this year's beneficiaries with Kenna, the cute red-head who started it all.
From left to right: Charlie and me, Makenna Johnson, Kenna Kucholz, and Grayson Hughes.

Charlie was in a beautiful and upbeat mood all day.

Charlie's 4-year-old brother, Walker, got in on the action.

Here is the local fire squad doing the Ball Drop contest. 

The winner took home two free round-trip tickets to anywhere in the USA.

After the ball drop, we were surprised by four parachuters that came soaring 

towards the golf course.   It was a fabulous finnish to the tournament!

Jack, Charlie and I took a few family photos while 

Walker jumped away in the bounce house.

What an incredible weekend.  

To Kenna's Kids - thank you from the bottom of our hearts.

And to the participants - thank you for supporting our beautiful Charlie.

All my love.

Sarah

Sarah Saw Something

Welcome to the "my life" edition of Sarah Saw Something - a weekly feature where I share little odds and ends that I found interesting around the blogosphere this week.   But as I said, this week, I'm highlighting some personal news.  I promise to be back on Monday with my usual boho decor fare and an awesome giveaway!  So stay tuned.

It's been 35 weeks since I began my weight loss jonrney and blog Smaller Sarah.  As of this week's weigh-in, I have lost fifty pounds!  Fifty!  Read more about it HERE.

Smaller Sarah

 

And my son, Charlie Fighting Bear, continues to combat back the effects of his stroke.  He just started some new therapies and is already making amazing strides in just a few short weeks!  He was recently selected as a beneficiary for an organization called Kenna's Kids.  They are hosting an huge golf tournament as a fundraiser for this year's kids - there are two others in addition to Charlie.  I know most of you are not local, but click HERE to read how you can help Charlie heal from afar.  You'll also be able to read about the other two amazing children who've been selected as 2012 beneficiaries. Your support means the world to me! 

Help Charlie Heal

 

And I've just restocked the small but sweet selection of vintage goodies at my Etsy shop.  Please click HERE to browse!

La Maison Boheme Etsy

Ladies Ecru Gloves

Vintage Portable Royal Typewriter

Small Ceramic Pitcher

Vintage Hand Mirror and Comb Set