In the Studio | Painting Charlie

5 years ago, I created a painting of my son. It was a painting just for me - an image to remind me that no matter what medical challenges my son would face, no matter what I was called to do as his mother, that I - in the face of this huge duty - would also remember to keep making art.

And it worked. This visual mantra worked so well that I ended up making a career of it. And for a while, I stopped working on the painting because other things took its place. So it was important to me, that the first piece I attend to in my new studio space was this one. Today, I'll varnish it and hang it in my space!






It Takes a Village | Crowd Funding for Charlie


We've just launched a crowd funding campaign for my son's handicapped accessible van!
Please watch the video below and check out all of the details HERE.


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A LITTLE ABOUT MY SON, CHARLIE: 

Charlie Greenman was born on August 4, 2010. It was soon discovered that he had suffered two strokes in utero. He has since been diagnosed with Cerebral Palsy and Epilepsy - all complications due to stroke.

When Charlie came into the world, doctors told us that Charlie would probably never walk or talk. As of this summer, Charlie is doing both and showing no signs of slowing down. This is due, in part, to the excellent physical and occupation therapy Charlie receives.





THE SITUATION: 

However, a new conundrum has come up for our family. Charlie's efforts to be mobile require all sorts of assistive equipment. We need space for both his wheelchair and his gait-trainer when we travel.

Also, Charlie has just hit 50 pounds and is in the 90th percentile for height. My husband, Jack and I carry him everywhere, lifting him in and out of wheelchairs, gait-trainer, grocery carts, chairs and cribs. But the most difficult transfers take place when we need to get Charlie through the car door and into his car seat.


THE SOLUTION: 

A handicapped accessible van for Charlie! We have just purchased a used Toyota Sienna from a neighborhood family. There is plenty of room for his equipment, but the best part is that it's already adapted for handicapped accessibilty. A new, fully adapted van, would have cost in excess of $60,000. We feel very fortunate to have found a used one in great condition for $26,000. 

But now we're in a bind - one which so many families of special needs children find themselves. We simply do not have the financial resources to pay for both Charlie's life changing therapies and also cover the necessary cost of his handicapped accessible van.






 THE GOAL: 

We're hoping to raise $26,000 for Charlie's new ride. Every dollar we receive goes directly towards paying down our car loan and allows us to continue our monthly payments towards Charlie's many therapy treatments.

THANK YOU to everyone for your past, present and ongoing support of our son, Charlie! Our family could not do it without you.  And a special thank you to Kenna's Kids for their amazing support for Charlie over the past three years.


Visit our Go Fund Me site to donate and share our story on social media.
For more information about Charlie, visit HelpCharlieHeal.com.




.......................................

Full disclosure: Go Fund Me takes 8% off the top of your donations, 
while Paypal only takes 3% in fees. Charlie's Paypal donation button is below
if you prefer that to Go Fund Me.

Thank you for all your love and support!


Fallen Log Postcard Holder

Texas has already seen its share of storms this fall and our neighborhood is littered with fallen tree limbs. So this weekend, my son Walker and I set out to harvest some of these limbs for a little craft project: photo and postcard holders. The idea came from Amanda Soule's book, Rhythm of the Family: Discovering a sense of wonder through the seasons.

Walker, 6 years old, was very keen to use a real hand saw. We picked out a few lengths of wood and cut them into small and large lengths to be used for our holder. Then we cut a 1/2 inch score into the top of the branch to hold the photo. After some light sanding (a job that Walker really got into) our holder was ready to display photos and postcards.

Not only was this a fun and short project my kiddo thoroughly enjoyed, it was also a great opportunity to explore our neighborhood, notice the flowers and take in some autumn air. These little holders will make great Christmas gifts as well - hand made with love by a proud six-year-old.










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!


MAY is Pediatric Stroke Awareness Month

Hi dear readers. This is my kid, Charlie. Charlie is three years old. He likes jazz, fresh air and hugs. Many of you know him, but some of you don't. He had a stroke before he was born. About a week before I delivered, Charlie had a massive hemorrhage on the right side of his brain. The stroke affected his motor skills, cognitive and language development. He has since been diagnosed with Cerebral Palsy, Hemiplegia and Epilepsy.

But we were lucky. Charlie presented signs of his stroke immediately and we were able to locate the bleed and begin the hard work of helping him attempt some kind of recovery. Many children who have strokes at such a young age go undiagnosed for months, even years. Why is this? The answer is simple. People don't think that babies and little children can have strokes. The fact is that 1 in 4,000 children will suffer from a stroke.

So, in honor of Pediatric Stroke Awareness Month, 
Charlie would like to remind you that...



Learn more about Charlie by visiting his website: Help Charlie Heal

Learn more about pediatric stroke by visiting the Children's Hemiplegia and Stroke Association.


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

Listen When Children Speak



One of my main purposes for simplifying our household consumption and embarking on the radical homemaking path was that it would free up precious time and space for me to be present with my two sons. The gift of unobstructed time and space and the togetherness it facilitates is essential to our survival as a family.

I have lots of conversations with my eldest son, Walker. He's a pretty chatty guy with lots of ideas and questions. In fact, I've been journaling our conversations for the past three years. The pages of my journals look like mini scripts, cataloging our interactions. Some of them are hilarious and some of them are heartbreaking.

Every night before bed, Walker spends a little time with my husband and I cuddling and chatting about the day. It's such an important part of our life that we included it in our family manifesto. Our evening cuddle is a great way for my husband and I to check in with our son, hear what thoughts are rattling around in his brain and assure him that we're always here for him. This weekend, when my son began expounding on his ideas of LOVE, I asked if I could film him and share his thoughts with others. He agreed and the video below is what followed.




If you'd like to share Walker's thoughts on LOVE with your community, you have his permission. When I told him that I wanted to put this video on my very public blog, he said, "Maybe if you share our video, people will see it and remember that everyone deserves love."

Mindfullness


Happy Monday! One of the unexpected gifts of radical homemaking and this new journey of simplifying my home's consumption, is that I have more time to notice my life. Sounds silly, right? Because I am not at the grocery store every week, running long errands while grabbing a Starbucks on the go, or heading out the door with my kids every time we want a little entertainment, I have more time to take notice of my home, my children and my marriage. My inner metronome has slowed down and my enjoyment of everyday moments has skyrocketed.

Yesterday morning, my husband snapped the photo below while I was holding my son. The astonishing thing to me about this photo is my state of being. Charlie is frequently relaxed and content, but I am usually bopping about doing some odd thing or another. A slower family rhythm is the unexpected bi-product of simplifying our household intake. Turning down unnecessary work, looking to home-bound activities for entertainment, making food from scratch and reigning in our budget has allowed me to be more present with my children and mindful of my own needs. While I was holding Charlie, this thought came to me: 

Hold your babies. 
Love them for who they are right now. 
Expect nothing.




I have shared the following image before on this blog but I think it bears repeating. It was originally compiled by Karen Maezen Miller for Shambhala Sun magazine. My husband cut it out and tacked it to our refrigerator in 2011. It's been up ever since and I read it everyday. It seems closely aligned with my Radical Homemaking journey, so I want to share it with you here.




Read more posts about my
radical homemaking journey HERE.

My House in December

The house is decorated for Christmas and the weather in Dallas is supposed to take a turn towards freezing tomorrow. I love this time of year!! I've included some photos of the house below, but first don't forget to enter the Octavia Bloom giveaway. One La Maison Boheme reader will receive a $60 dollar gift certificate to spend in the Octavia Bloom Etsy shop! To enter, click HERE.









And, since I'm a proud Mama who just can't help herself,
 here are some photos of my six-year-old trimming the tree.







Life Lessons from my Son

Today is my son's sixth birthday, so I thought I'd share a little story about him. Two weeks ago, my husband and I attended a much anticipated wedding ceremony for our dear friend Kevin. Kevin and his partner Keith were hosting a ceremony to honor their wedding, which took place this summer in New York City. Here they are on their wedding day:




My son, Walker, wanted to make a picture for the happy couple and a marvelous conversation ensued:

Walker: I’d like to draw a picture for the couple getting married.
Sarah: Great! They’d love that.
Walker: Now is it a man and a man, a woman and a woman, or a man and a woman getting married?
Sarah: Good question. It’s a man and a man.
Walker: Good. Then I’ll draw two people with short hair. And I guess man clothes.
Sarah: Do you want to see a photo of them? (I show him the photo above.)
Walker: Oh, one is bald, that’s good to know. And look how smiley they are!


Walker's lesson:
Unconditional love, compassion and inclusion are our natural state. 
It really is that simple.


Kevin wrote a beautiful post about Walker, the picture, the conversation and the marriage ceremony on his blog, HERE.  I urge you to take a look and read Kevin's beautiful post. I'm so proud of my son and so happy to be his mama. Here is the picture:





Walker - happy birthday darling boy. 
You are a wonder and I love you so very much!



Three Years Old

Today my son, Charlie - whom we loving refer to as Charlie Fighting Bear - turns three! It's been an awesome year for this little man so I wanted to celebrate here at La Maison Boheme. To learn more about Charlie click HERE.



Happy Birthday darling boy!

This Week in the Studio

It's June?  Wow.  Spring is gone, eh?

I'm working on a series about my son, Charlie - more specifically, about his brain. Now that he is showing big and outward signs of progress, I'm ready to begin looking at the last three years of his little life with a different eye - the MRIs, the scans, the seizures, the skull surgeries, etc. Charlie continues to have good and bad days, but he's showing some exciting signs of possible speech and even walking! I've included a really awesome video of Charlie at the bottom of this post.


Neuroplasticity  -  12x12 acrylic and oil pastel on canvas



And here it is with another piece in the series entitled "According to the MRI".




Like I said, my son Charlie has Cerebral Palsy related to stroke. He can't walk or crawl. Last fall he began bearing weight through his legs and feet with the help of orthotic braces and the support of an adult. But just recently, he began shifting his body weight onto one foot and picking up his other foot to mimic a stepping action. This week, he completed the action and was even able to get his stroke affected leg to participate. Here he is putting one foot in front of the other and bearing weight through his hips, legs, knees and feet. I'm holding him by his pelvis to keep him upright - the rest is all him!


My Little Family

Sunday is my favorite day of the week. We call it "family day" and its usually set aside for pancakes, family projects, family outings and sometimes an in-house physical therapy session for Charlie. Its a time when we connect with each other, take stock, recalibrate and buoy ourselves for the busy week ahead. 

Recently, one of my beloved doula clients (I was present for her last three home births) gifted my family with a film session with the very talented Ceci Jane. Ceci usually makes birth films, but she also does "day in the life" type films. I asked her to join us for a Sunday in March. She filmed us hanging out at home and turned her footage into this amazing little slice-of-life video for our family. 



Tourist in my own town.

On Wednesday, my father and I took my kids to the new Perot Museum of Nature and Science in downtown Dallas.  The building itself resembles a disjointed cube of stacked stone tucked up against the freeway.  We've been itching to get inside and see the new space.

My 5-year old son's response?  "Totally awesome!"  And he's right.  It is.  If you ever find yourself in the DFW area, put it on your list.  My favorite part of the day?  Listening to my five-year-old explain to me that water is "actually" a compound called H2o, which means an oxygen molecule and 2 hydrogen molecules.











Here's a shot of my son, Charlie exploring a light sensitive wall with his hands.








Walker and I read about our expanding universe.





Walker and I discuss the finer points of Barometric Pressure.





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! 

Play Time

I love weekends with my family.  My husband has an academic schedule, which means that most Saturdays and Sundays are completely ours. Our favorite thing to do is throw the boys in the car and head for a quick coffee stop. Then, lattes in hand, we visit one of Dallas' parks (there are hundreds of them) for play time. Here are some photos of me and my boys last weekend braving the chilly weather. What does your weekend hold?





Holiday Art

My son is always painting or crafting or gluing or constructing something. These days, his mind is bent on an inexorable path towards Christmas day.  Let's just say he's very excited.  So we've been making some holiday crafts... the first is my son's wreath made from a paper plate.  The second was a quick painting I did on a Christmas card.  Hope you have some time this week to craft a little Christmas something. 



Feast Day Photos

I thought I'd share a few shots from around my home and garden this past Thanksgiving Weekend. Little bits of seasonal color, an ode to Julia Child on what would have been her 100th birthday, Walker, my four-year-old son, crashed out in my bed and a cozy corner of my dining room.  Hope you're having a lovely week so far!