The 2016 Chromosome 18 Conference: Kindness and Pizza and Surprise Encounter

(This is part six of The 2016 C18 Conference Journey. Go here for part one.)

July 14 2016:

The Journey home … San Antonio to Las Cruces, New Mexico!! Had an amazing dinner at this lovely place! We got there at 8:50. They close at 9:00, yet invited us to come on inside and we had THE BEST brick oven cooked 4 cheese pizza EVER!!! …. With an amazing salad and pistachio gelato for me and lemon sorbet for Thomas!! Plus shaved carrots and prosciutto for Lillian since she doesn’t eat pizza or salad! xoxoxo

Look who we ran into!!! The Romano Duo and Team TLC got to cross paths in Las Cruces, New Mexico this morning. Spent about an hour together chatting. Now we head in different directions. xoxo

July 15 2016:

The Journey home …. Las Cruces, New Mexico to really close to the Nevada border. Was going to try to make it to Boulder City today but we spent an hour with The Romano Duo this morning since they were driving right by Las Cruces where we had stayed for the night.

Then, we hit rush hour traffic in Phoenix. The hour with The Romano Duo was totally worth it. Long drive tomorrow, yet we will be in our own beds tomorrow night!! xoxo

The 2016 Chromosome 18 Conference: Riverfront Walk With Lillian

(This is part five of The 2016 C18 Conference Journey. Go here for part one.)

July 13 2016:

Wonderful, warm, and beautiful walk with Lillian yesterday. Blessed that she, too, loves our time in nature. Looking, listening, and discovering. xoxo

The 2016 Chromosome 18 Conference: Stairs Conquered

(This is part four of The 2016 C18 Conference Journey. Go here for part one.)

July 13 2016:

Welcome to a different new … Check out these 3 sets of stairs Lillian conquered!!! You go beautiful you!!!

Lillian has had a fear of stairs since being a toddler. We have always had to use an elevator and if one has not been available; she has held tightly to me with a white knuckle grip with sweaty hands and tons of anxiety.

So exciting!

Reaching for the Stars

Lillian Going Down Stairs July 2016 San Antonio

She’s reaching for the stars … And she will have what she reaches for …. Incredible, wonderful, inspiring blog post that Lillian wrote yesterday … xoxo

“Hey, everyone! This blog post will include 2 stories (1 non fiction and 1 fiction), inspiration, and a fiction interview. Let’s start with the non fiction story.

One day, my body decided I was ready to try the ladder at my therapy place. Slowly but surely, my body had decided to try the stairs. Now I can easily walk up them alone without being scared. Ever since, I’ve been proud to have touched the stars. (If anyone wonders what’s next, it’s escalators).

Let’s move on to the fantasy version of a story. I hope you enjoyed the 1st story!

Once, a young girl named Rainbow had wanted to be able to go down stairs for a long time but her body wasn’t ready to do it. Many years past before her body started to sense that she wanted to achieve the goal. When she was probably 14, her body was able to take the hint fully. So she took her time up until Wednesday when she achieved the goal. She was very excited. She was reaching toward the stars.

Let’s move on to the interview. This is where you will find more details about the first story. Speaking of story, I hope you enjoyed the 2nd story. (If you are wondering, this blog post is inspiration based). …………. The moral is to reach for the stars.”

Go here to read the entire story

The 2016 Chromosome 18 Conference: Deja Vu and The Riverwalk

(This is part two of The 2016 C18 Conference Journey. Go here for part one.)

July 10 2016:

The one who says to me as we’re driving through the amazing rock formations after going through the Boulder Dam area … “I always have deja vu, like I’ve lived this life before. He said it all seems so familiar.” … and when we encountered some difficulties on the trip down … “When you get a rock in your shoe, just shake it out” ….. I deeply love this little human … Thomas Darnell …. xoxo

July 12 2016:

Took a much needed walk this morning. Feeling so out of place here. This was exactly what I needed. Felt like a massage … So relaxing, refreshing, and inspiring. I love nature. xoxo

 

 

 

Fireworks and Popcorn and Biggest Little Photographer and Awareness

July 4 2016:

Just back from an adventure! Made popcorn, grabbed some jelly beans, found a perfect spot to park in Reno so as to watch the fireworks in Sparks …. Absolutely wonderful spot away from crowds and the boom, boom of the fireworks. This is how we roll with sensory issues …. What FUN! xoxo

July 5 2016:

She’s up to 8 steps now!! This is so wonderful! She has NEVER gone up stairs without clinging to me for dear life!!!! We have always avoided stairs due to her fear and proprioceptive issues.

She made it a goal to reach the top before we leave for San Antonio. Tomorrow she’ll be going up the last 10 steps since we leave Thursday morning. Stay tuned … xoxo

Lillian going up 8 steps July 5 2016

July 6 2016:

Just wanted to share another Biggest Little Photographer update …. And since we’ll be leaving on Thursday for the C18 Conference here’s a picture that minifigure photographer took while at the 2014 C18 Conference … New York Harbor … xoxo

Our goal was to have received 100 pre-orders of Thomas’ Biggest Little Photographer book by July 1st. We didn’t reach that goal OR did we? They’re still coming in and we’ve had about 30 pre-orders for the book now. Some orders are still coming by check so not sure of the exact amount.

However, sometimes what we wish for is delivered in a different way. After calculating money we received last week … When divided by $20 (average price for book) … It comes out to 100 …. Ummmmm … WOW!!

So we actually exceeded our goal! Our goal was met in a miraculously creative way … With 2 couches, a bayou Angel and her mom, and the loving-kindness of those who shared, liked, commented and purchased. Team TLC overflows with gratitude and sends blessings and love to all … xoxo

Lego minifigure new york harbor July 2014

July 6 2016:

A State of Pure Awareness – New blog post that poured out so fast and hard I was barely breathing and two hours went by that felt like 30 minutes ….

” ……… My therapists have been the authors of the books I read. Two of my greatest teachers have been my kids, Thomas and Lillian. Other teachers have been the suffering brought on by my thoughts, beliefs, and ideas, and those with whom I have shared un-lovely moments. The friends I share absolutely everything with are nature, meditation, and my own version of praying.

I continually ask to see things differently, to question the thoughts, ideas and beliefs I have. I ask to unlearn thoughts, beliefs, and ideas that no longer serve me. In the few days before this experience, I had finally come to a point where I authentically released and let go of all that I wish for and want. I let go of it with tremendous love and with the knowing that I would absolutely receive once I let go of the longing.

Here is what I experienced ….. ……”

To read the entire post visit here  …. It’s the first post on the blog. xoxoxo

July 6 2016:

We leave first thing in the morning …. And two goals reached today!

Top of the ladder at physical therapy and TOP OF THE STAIRS … Without clinging to me!

She DID IT! Oceans of gratitude for all the encouragement!!! xoxo

Thank you oceans and oceans for the wonderful cheering for Lillian!! Yesterday, she went down 2 flights of stairs and one huge flight to get from the main level of the hotel to the Riverwalk!! Four years ago when we were here we had to take the elevators down ….. I’m so happy she listens to her intuition and body and does things as she knows she’s ready! xoxo

The 2016 Chromosome 18 Journey Begins

July 6 2016:

Rosey got a bath today to get ready for our trip!! Going through the car wash is so fun!

If it feels right we would appreciate love, good juju, prayers for our car, Rosey, and our journey. Rosey is 15 years old and we need her to take care of us and get us there and back safely and smoothly. Oceans of gratitude!! xoxo

Rosey Getting Car Wash July 6 2016

July 8 2016:

Whew!!! We made it somewhere!!! Team TLC is in Surprise, Arizona! We left Reno at 7:00 this morning and at 9:00 tonight we came upon Surprise. We said, “yes, we’ll take it!”

Sorry for our silence. I do not pay for data so we are not online again until we have wifi. Onward to Texas tomorrow. Does anyone know a good stopping overnight point between Tucson and San Antonio via I-10?

July 8 2016:

Surprise, Arizona to El Paso, Texas … We made it to Texas! We’ll be in San Antonio tomorrow late afternoon. Amazing rock formations in Arizona and New Mexico. We will come back when it’s not so hot!!

Lillian and I don’t do well in this high heat! Rosey was even getting too hot! This is a ton of responsibilities for one adult and I am learning so much! Yet, I have so much fun traveling with them. They are such wonderful teachers of living in the moment. My heart swells to overflowing with love …. xoxo

I am writing like the wind before I get this tired mind and body into bed and be ready for one more day of driving tomorrow. I am compelled. I have just got to document some of what we are experiencing and talking about.

Thomas had such amazing thoughts to share yesterday and Lillian also yesterday morning before she got a tummy ache. Although we are having a ball and laughing tons and enjoying this beautiful land as we drive by it; this has not all been fun and easy, and it was my goal to have this trip be a learning experience for me of not knowing, not planning, and just going. That’s certainly not for everyone.

Yet, I felt this was important for me. It’s a huge step out of my comfort zone. One step closer to trusting myself, trusting internal messages, and letting go of how it’s supposed to be done. I’ve never driven this far alone … Much less alone with Thomas and Lillian. Plus driving this far in a 15 year old car. Skating through this trip on less than a shoe string budget and letting go of worry that the string will hold tight …

I’m having moments when I’m so tired I’m shaking and wondering what in the hell I’m doing ….. Yet, I know. I may not know on the surface right now; but deep down, I know why I do what I do. And then we share these amazing moments together with wonderful comments from Thomas and Lillian and moments full of so much love that further each one of us. Moments where I’m so hot and exhausted, I have visions of taking an ice bath! Definitely some amazing growth for all of us happening! WOW! xoxoxo

July 9 2016:

El Paso to San Antonio! We made it about 5:30 this afternoon! Been a whirlwind since.

There is so much unexpected loving-kindness flowing my and our way … WOW!!

I just drove Team TLC 1700 miles … I did it! Now. Where’s my bed?

 (Go here for part two of the 2016 Chromosome 18 Conference Journey.)

Magic and Stairs and Cookies and Rainbows

June 12 2016:

I have been working on this post for two days now! Done! It’s a throwback to 2010 and 2011 with updated content. I came across an article the other day that moved me to the core and just knew in my heart I must write this.https://camilladowns.com/…/the-power-and-magic-of-connected…/

Now we can go on a little adventure and then back to create a special poem to accompany a very special painted rock for a beautiful soul way down in the bayou.

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June 15 2016:

She set a goal of going up 2 stairs, without holding onto me, before her physical therapy appointment today. She did it yesterday afternoon! By next Wednesday it will be 4 or 5 steps! Wahoo!!!

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We’re working on the book trailer for Thomas’ upcoming book … “Grand Adventures of the Biggest Little Photographer” … Here’s a fun picture I took of him taking a picture of the mini figure taking a picture.

The book will contain many of the photos he took during the 365 day photo project he decided to do on his own when he was 8 years old. It will also include an introduction of how it began, quotes, and a bit of the story along the way. Coming Fall 2016 – You can pre-order if this sounds like something that interest you or if you know a LEGO enthusiast!!  … xoxo

Thomas Taking Picture of Minifigure Taking a Photo 2014

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June 16 2016:

And just because. We made chocolate almond flour cookies last night at 8:30. Toasted to Team TLC and read our read-aloud-book!!! So YUM!!!

Chocolate Almond Flour Cookies June 16 2016

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Looks like a grand adventure awaits us next month! The Chromosome 18 conference is in San Antonio this year, July 10-13th and we are going to drive. We found out today that an organization that has helped us get there the past two years is not able to help this year. xoxo

Google Maps suggests three different routes. Has anyone out there driven any of these routes, know the road conditions, etc … Need to decide which is the best route. What about campgrounds on any of these routes? Know about any?

Every year Thomas and Lillian both want to contribute to getting us to the conference. They come up with their own ideas and offer their creations through each of their websites. Here are the different ways to support our trip if it feels right to you (and a link to a blog post with more information …https://camilladowns.com/…/2016-chromosome-18-conference-sa…/):

Route suggestions per above
Painted Rocks by Thomas
Leaf at Sunset by Thomas
Nature Adventure Set by Thomas
Mini-figure photo a day prints by Thomas
Pre-order “Grand Adventure of the Biggest Little Photographer” by Thomas
Random Act of Love Cards
Services by Thomas (errands and poop scooping – in Reno area) (email me regarding this one)
Egyptian Eye by Lillian
Rainbow of Emotions by Lillian
Custom Abstract Art by Lillian
Mystique Boutique
Walk With Me
“D iz for Different” book
Custom Poem by Camilla

Google Maps June 2016

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This. Just when this message was needed. I was drinking my water earlier today and this is what I saw.

Received some news today that is not what I expected and kinda leaves me feeling really tired. Yet, I know there is a different way to see this … And this was a reminder. Sharing for anyone else who needs it …. xoxo

Heart Bottom of Glass June 2016

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June 17 2016:

Lillian’s latest blog post and her latest abstract art creation, Rainbow of Emotions. Let her know if you’re interested in having an 8 X 10 print of it. This is just a picture of it. The scanned version will have crisp clarity. May you enjoy her story about Rainbows and Love! xoxo

“Hey, everyone! This story is about rainbows and love. I hope you enjoy!

Once there lived 2 rainbows who didn’t want to separate for the love of nature. Their names were Candy Rainbow and Princess Rainbow. One day, Candy Rainbow was accidentally separated from Princess. What they didn’t know was the Nature fairy had split them in half.

Candy desperately looked for Princess but there was no sign of her. Meanwhile, Princess was where Candy wasn’t. She was anxious to find him but the Nature fairy wouldn’t let her. Candy got up to ask the Nature Fairy. What the fairy said, “No, I haven’t seen her. I didn’t separate you.”

Candy thought the fairy was being suspicious. Princess started suspecting the fairy. After a year past, they accidentally ran into each other. When the fairy found out, she was furious.

The fairy decided to put Princess invisible so she couldn’t be seen when they bumped into each other. Candy tried to explain to the Nature fairy that rainbow magic was more powerful than fairy magic. Since the nature fairy wouldn’t listen, Candy decided to show her what he tried to explain.

So his plan was to use his magic and power to get Princess out of the invisible world. So when Princess saw he was stretching out to use his power, she decided to reach over and touch his stretched arc. Candy felt lighter somehow but he didn’t know how.

Suddenly the invisible spell broke. The fairy was shocked at what happened but the fairy had to vanish. “It was me who helped you, Candy”, said Princess softly. “Thank you, Princess!” and the rainbows’ love was returned.

Princess thought if people saw them, it would be easier to have 1 rainbow be invisible. Princess decided to go invisible but Candy was able to see her. Every once in awhile, Princess appeared behind Candy. That is why some people see double or triple rainbows.”

Lillian's New Abstract Art May 2016

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June 17 2016:

Setting family intentions, making a plan, creating a “happy songs” play list, listening now, deciding on new rituals, and discussing the importance of gratitude.

That’s what Team TLC did this morning. Next up, framing our intentions and rituals and hanging on our wall. We are family and It’s a wonderful world with Three Little Birds singing “Every little thing’s gonna be alright” …. Hakuna Matata xoxo

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This one’s headed to live in Houma, Louisiana!! Have fun down in da bayou!! Rock is hand painted rock with acrylic paint and sealed. Poem created by me and handwritten on recycled materials ready to hang.

Walk With Me

I walk this path with legs
that have walked many miles.
I walk this path with arms
free of heavy burdens from the past.
I walk this path with a mind
that supports and encourages the heart.
I walk this path with a heart
that is pure and ripe with love.
I walk this path with eyes
fresh with new perspectives.
I walk this path with ears
awakened to natures sounds.
I walk this path with a nose
that inhales the sweetness.
I walk this path with mouth and lips
parted to breathe the benevolent essence.
I walk this eternal path home
with all beings as one. ~Camilla Downs 2016

 

Swimming and Shadows and Cool Clouds

April 20 2016:

Lillian finally got to go for a swim! Cloudy …. yet we had the entire pool to ourselves!

  

Windy and wonderful walk with Lillian yesterday after dinner. Chatting, the lake, shadows, and crazy cool clouds. xoxo
  
  

  
  

Blessings,

Team TLC
See It. Share It. BE IT … Spread Love Everywhere You Go!

Did you know Camilla wrote a book? It’s titled “D iz for Different – One Woman’s Journey to Acceptance” and you can read more about it here.

Latest Articles:
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I Found Bad Words

Lillian misquote – What I heard, “I found some bad words yesterday.”

What she really said, “I found where I was yesterday.”

April 22, 2016

Blessings,

Team TLC
See It. Share It. BE IT … Spread Love Everywhere You Go!

Did you know Camilla wrote a book? It’s titled “D iz for Different – One Woman’s Journey to Acceptance” and you can read more about it here.

Latest Articles:
[catlist name=home]