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.



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

Charlie News

Thank you all for your emails and comments in support of my son, Charlie, who recently had an MRI.  Our neurologist wanted to take a look inside Charlie's beautiful head to see the current state of his perinatal brain hemorrhage.   For those of you who are interested, I have posted a full report of the MRI on Charlie's blog HERE.  And just for fun, I want to leave you with cute baby giggles, which seem to heal most any problem. 



All my gratitude,

Charlie and Kenna's Kids

Its been a while since I've shared an update on Charlie.  As most of my long-time readers know, Charlie had a stroke before he was born, the effects of which cause him lots of physical delays.  He's almost 18 months old, but cannot use words, sit up or crawl.  The stroke was on the right side of his brain, which means that his left side is somewhat rigid and his left hand is usually balled in a fist.  Charlie has been in physical therapy since he was seven weeks old and he will continue to attend therapy sessions for most of his young life.

Charlie's physical therapy is going very well since we last checked in and just this week he said, "Mama" for the first time!  (Well.... its was more like, "mamamama" - but I'll take it!)  It was pure joy hearing my name come out of Charlie's mouth.  Charlie has also recovered beautifully from the skull surgery he had last August.  His scar is totally invisible and he has no traces of his former head shape, which was small and pinched due to a condition he had called Craniosynostosis

Tomorrow, Charlie has an MRI, his first in over a year.  Doctors are going to look at the stroke site and also assess whether Charlie has had any recent seizure activity.  Then on Saturday, Charlie will be having a full physical assessment to determine his next phase of physical and speech therapy.  But Charlie also has some very exciting news to share with you!



We're so excited that Charlie has this wonderful new opportunity.  With the help of Kenna's Kids, Charlie will have access to a larger variety of therapies and Kenna's Kids maybe even help us pay off some of our outstanding medical bills!  Feel free to visit Kenna's Kids at www.kennaskids.org to find out more about Charlie's new advocates and how they are preparing to help.  And as always, you can stay connected through Charlie's blog, Help Charlie Heal.


I cannot express my deep gratitude to you, dear readers, who have supported my family, loved Charlie from afar and buoyed me with your words of inspiration and thoughtful messages.  It has meant the world to me.  And thank you to Kenna's Kids for choosing Charlie.  I have a feeling, things are about to get a lot better. 


Want to get involved with Kenna's Kids?  Click HERE to learn how.
Or, contact Jeremy Pigott at jeremy.pigott@mastech.com.

You can also stay connected through Kenna's Kids on Facebook.
Go "like" their page and show your support!


Photobucket


Art Card Giveaway Winners


Congratulations to the Help Charlie Heal Giveaway winners:
Diane
jhitomi
Michelle

I will be in touch shortly to get your address and send you your Help Charlie Heal Art Cards!
Thank you everyone for all your love and support for Baby Charlie!

P.S.  Diane, you did not leave an email and I have no way of contacting you.  If you're reading this, please send your mailing address to me at lamaisonboheme at gmail dot com.  Thank you so much!

Sarah Saw Something

It's time for another installment of Sarah Saw Something, where I share little odds and ends that I found interesting around the blogosphere this week. 


This post showcasing ethnic textiles by Ashlina, aka The Decorista, made me very happy.




Rashon Carraway, aka Mr. Goodwill Hunting, blew my mind this week by painting (yes painting) a pair of wing back chairs in lieu of re-upholstering.  The best part is that it cost him only $14.99.  They looks amazing.  Click HERE to see the finished product and HERE to learn how he did it.




I can't stop listening to this duet by Gotye and Kimbra.  I love it so much.




For those of you who follow my other blog, Smaller Sarah - I just hit the six month mark on my one year weight loss journey!  I'm excited to report that I'm down 40 pounds and I'm gearing up for my first ever 5K run in March!  If you're interested, you can read more HERE.





And finally, don't forget to enter the Help Charlie Heal Giveaway.  You could win one of five sets of art cards created by my four-year-old son, Walker.  They are awesome!  Click HERE to enter.  Giveaway ends tomorrow night.

Friends and Sons

First, for the "Friends" portion of this post.  Today, I'm guest posting for Tobe over at Because It's Awesome.  Tobe just closed on a new home and needs a little time away from her computer to crack open a bottle of champagne and sign a bajillion pieces of paper where she promises to pay taxes and interest and to love her home very very much!  Congrats Tobe - a new home a wonderful thing!  Click HERE to read the full post.

And here is a peek at how I would design her new abode...









And now for the "Sons" portion of my post.  I want to remind you that we're giving away FIVE sets of Help Charlie Heal note cards in honor of Charlie's recovery from craniofacial surgery.  Thank you for all your emotional and financial support over the past year.  My online community has played an enormous part in Charlie's journey.  So we're giving away five sets of cards as a thank you!  Each print was painted and titled by Charlie's four-year-old brother, Walker.  Click HERE to enter.  Here is a peek at all eight prints you'll find in in the set:


"Snakes In Love"
 
"Play Area"

"Orange Train"

"Splatter Picture"

"Stone Thrower"

"Yellow Room"

"The Red Potty"

"Race Track"

Click HERE 

to enter the Help Charlie Heal Giveaway!

Help Charlie Heal Giveaway

I can't believe it's been four months since Charlie's craniofacial surgery.  As you can imagine, these last few months have been a very important time for recovery, re-assessment and rest for my little guy.  In addition to healing from major skull surgery, Charlie is is making enormous strides to overcome the effects of his stroke.  He is babbling, cooing, reaching, expressing and growing stronger with each passing day.



In honor of his many triumphs and his continued journey towards a normal life, our family would like to show our deep gratitude by giving away a set of art cards created by Charlie's older brother to five La Maison Boheme readers.




Five winners will receive a set of Art Cards!

The art was hand painted by Charlie's 4-year-old brother, Walker.  Each set of cards has eight boldly painted prints, all titled by the artist. The Help Charlie Heal art cards giveaway is our way of saying thank you for your unconditional support, kind words and tender wisdom. Many of you have followed Charlie's journey through his blog and many of you have generously donated to his medical fund.  From the bottom of our hearts, thank you.

Help Charlie Heal Art Cards


To win one of the five sets of art cards, please leave a comment below.  It's that simple.  You are welcome to leave Charlie an inspirational quote or some words of encouragement.  But all I need is an email address so that I can contact you when you win.  The giveaway ends on Sunday, December 4th at midnight (central time).  The five winners will be chosen randomly and announced on Monday morning (December 5th).

Want more information about Help Charlie Heal?
Stay updated via Facebook or via the Blog.


All my love and gratitude,

Come to the Cabaret!

What good is sitting alone in your room?
Come hear the music play. 
Life is a Cabaret, old friend.
Come to the Cabaret.












Tonight at 11pm in Cedar City, Utah at "The Grind"
a group of amazing actors will take to the stage. 

Who are these people? 
They are friends and colleagues of my husband's
who are all working at the Utah Shakespeare Festival.
They are doing a cabaret to benefit Help Charlie Heal


Come to the Cabaret!

Sarah Saw Something - Charlie's Surgery Week

It was a year ago today that I first learned about Charlie's stroke and Craniosynostosis condition.  He was two days old.  I remember sitting in the NICU peering through the IVs and feeding tubes and monitors into the eyes and face of my sweet newborn thinking, "Please please please please please be okay.  Oh God, please."



A year has passed and now he's better than okay.  He's incredible.  



This week, Charlie had craniofacial surgery to separate the skull plates that fused prematurely due to his Craniosynostosis.  We checked into the hospital on Monday morning and a team of sweet angel nurses took Charlie from my arms and into the OR.  When the double doors swung closed behind them, I stopped breathing.  My husband and I left the room and headed for the elevators that would take us to a waiting room and I literally couldn't catch my breath.  Its the most difficult thing I've ever had to do.



When Jack and I were reunited with Charlie, we were awed by his transformation.  His face was still his own, but the shape of his head was so drastically different that it altered our perception of all his features.  How odd to fall completely in love with one face, only to suddenly be faced with a new one.  Charlie had weathered surgery beautifully and could now begin his recovery.



I knew that recovery could get ugly.  Most babies who undergo craniofacial reconstruction experience considerable swelling and bruising.  Charlie was no different.  He spent a day and a half with his eyes swollen completely shut.  Even in this condition, Charlie would smile and eat and relax in our arms.  His ability to trust, release and renew his own body is simply astonishing.



Many of you have written to me asking about the details of the procedure.  So here it is in a nutshell.  Nurses and an anesthesiologist got Charlie all hooked up and sedated.  Then they carefully braided back his hair to ready the skin for surgery.  As far as I can tell, they do this instead of shaving the head as a compassionate gesture towards the child and parents to reduce emotional trauma.  His neurosurgeon then made an ear to ear zigzag incision to expose the skull.  Charlie's craniofacial surgeon then drew little lines on the skull so that the neurosurgeon knew where to cut.  They separated Charlie's fused forehead and chipped it up into little puzzle pieces.  Then they took a smooth section of skull from the top if his head and replaced the missing forehead.  Then Charlie's craniofacial surgeon pieced the remaining skull chips into the open spaces to create a "normal" rounded skull shape.  Magic.  Then stitches.  Then recovery in the ICU.  Now Charlie's brain has room to grow without the threat of neurological damage and his skull will fuse naturally in late childhood just like other kids.



After only 48 hours in the hospital - start to finish - we were home with Charlie.  Charlie was healing quickly and showing all outward signs of stability and readiness for discharge.  We're now five days post op and Charlie is looking really good.  He still has some light bruising and swelling, but in general his surgery and recovery has been a resounding success.  The photo below was taken this afternoon, only 120 hours post op.  Miraculous. 



Thank you to all of you who have written encouraging emails, sent prayers and donated to Help Charlie Heal.  And thank you to the amazing guest bloggers who filled La Maison Boheme this week with beautiful outdoor dream-scapes.  This week reminded me once again that Charlie has an enormous community of support and love.  I am filled tip-top with gratitude.  Nothing but gratitude.


Yours,
Sarah

Diving In

Today, I'm diving in to the deep end.  My husband and I are taking our son, Charlie, in to the hospital to meet with neurosurgeons, anesthesiologists, hematologists, craniofacial surgeon assistants, nurses, and some anthropologists who'll take pictures and measurements of Charlie's head.  All of these pre-op appointments are to prepare him (and mostly us) for surgery on Monday.  Wish me luck... I may be under water for a few days, but I'll be back at the surface soon.  Thanks to everyone for your incredible support during this weird and sometimes terrifying time.  How did our mothers do it? 


To stay updated during Charlie's surgery, please visit Help Charlie Heal
This blog helps to keep Charlie's community and family up to date and I'll
be posting there about his surgery and recovery.  Again, thank you all.

Shop for Charlie at KOKOON

Hi dear readers... just a quick post to remind you that there are only two more weeks to shop the online sale at KOKOON.    KOKOON is a beautiful line of clothing created by Laine Sou Weinberg, who is hosting a pop-up SHOP through July 31st!  Here is the best part... Laine is going to donate 20% of the sales from La Maison Boheme to Help Charlie Heal, my son's medical fund.  As many of you know, my son Charlie is a survivor of infant stroke.  He is also getting ready to have surgery to correct his Craniosynostosis, a condition where the skull plates fuse prematurely in the womb.  Help Charlie Heal is a fund to help our family pay for Charlie's mounting medical expenses and I am so thrilled that KOKOON proposed this partnership.  Read more about KOKOON's partnership with Help Charlie Heal HERE.  And thank you to all of you who have shopped for Charlie and/or donated to Charlie's fund.  You are amazing!






... and here's a recent photo of Charlie Bear!