Throwback Post: The 2013 Chromosome 18 Conference

**THROWBACK POST**

July 26 2013: Almost ready to board …. The 2013 Chromosome18 conference adventure has begun!

Team TLC at 30, 000 feet … Overflowing with gratitude for all we are blessed with!

Next part of the 2013 Chromosome18 conference has begun … Las Vegas to Atlanta …. I’m in the middle of a Thomas and Lillian sandwich!

Last stop today on the 2013 Chromosome18 conference adventure …. The adventure continues tomorrow! Atlanta to Savannah!

July 27 2013: Next phase of the 2013 Chromosome18 conference Adventure …. Planes, buses and automobiles!! Planes are done, now for the bus and then automobile in Savannah! Now, this is truly an adventure!

Team TLC is on the bus! A first for all 3 of us … pretty cool! Plugins at every seat and free WiFi! Onward with the 2013 Chromosome18 conference adventures! ETA in Savannah is 1:30!

We made it to Savannah! Thanks Mark Sogard for picking us up at the bus station!!! The adventure TO the 2013 Chromosome18 has come to an end! About to check in at The Marriott!

Grateful for yummy fulfilling food …. had our 1st meal of the day! Been giving and getting lots and lots of hugs! Beautiful hotel, beautiful riverwalk.

Hmmmmm ….. They had to make a law for this? Hmmmmmmmm ……

July 28 2013:

Beautiful walk in Savannah this morning. Nature had some heart warming beauty to share. Absolutely AWEsome!!!!

Swimming adventures for Team Member T & L last night! They both slept sooooooooo good!

Yum!!!!!! I’ve got crab in my hair and all over me!!! Muscles, clams, shrimp and crab adventures!!! Thomas loved the shrimp, muscles and crab! Lillian had fries! Overflowing with gratitude …. And seafood!

FUN 1st night y’all! Thomas kissed a parrot and pet a tortoise! Lillian hung out with her friend Katie!

This is how Team TLC rolls … we come to Savannah, Georgia to the Chromosome 18 conference and spend 45 minutes on our deck playing with shadows! Thank you to our beautiful neighbor, Robin Krueger, for playing with us and lending her flash so we could have darker shadows. Huge Thomas, Camilla’s boot, a gigantic heart, and Robin’s bunny!

August 1 2013:

Thomas with his friend Oliver yesterday in the hotel restaurant, blue …. Thomas just loved Oliver …. Oliver was telling everybody about Thomas, even the wonderful lady working behind the lunch buffet counter. I had Thomas go introduce himself to her so she would know who Thomas is! When I picked up Thomas yesterday from the care/playroom, Oliver showered him with kisses on top of his head. Thomas doesn’t even let me kiss him that much! Oliver loves Thomas and Thomas loved playing with him! I’m sure Oliver’s parents are tired of hearing Thomas’ name!

Farewell dinner and dance …. Team TLC‬, Lillian, Katie, and Rebecca and Thomas and Kellan Guthrie! FUN and LOVE!

Last lunch in Savannah ….. YUM!! So grateful!

More farewell dinner and dance adventures … Lillian, both Katie’s, Rebecca, Kaylin, Remy and I cannot remember the other sweet young lady’s name …. Thomas playing the guitar, and Lillian and Pam.

River ferry ride adventures for TEAM TLC! That’s our hotel as we pull into the ferry landing. Ran into IM too!

Thank you to Jon Baker and Kaitlin Baker for taking Team TLC to the Greyhound bus station this afternoon! We are grateful for and blessed with the love and kindness of the entire Baker family! Team TLC loves all y’all ….Abby Baker, Missy Baker. We’ve got about 30 minutes left before we arrive in Atlanta.

C18 2013 Trip Katie and T and L

Thomas on dolphin cruise …

August 1 2013: I love this AWEsome man … He listened to his beautiful soul years ago about the true meaning of beauty and simply exudes love with every smile and hug he shares. Rick Guidotti lives and breathes and shares his passion ….. and it benefits humanity by creating a positive shift in this World.

C18 Trip 2013 Camilla and Rick

July 30 2013:

Good Gosh! Mother Nature shares some beautiful stuff down here y’all! It’s gonna be a GREAT day! Grateful for waking up this morning, the air I breath and being able to go for morning walks!

Words of Wisdom from the Self-Advocates during their presentation this afternoon. As I listen and take in their wise and knowing words, I think to myself ….. “What the heck excuse have you got for anything!”

We all have something that is similar about us. -Megin Smith
Don’t give up, keep on trying. -Katie Bentley ( Rhonda Bentley)
Life is complicated but hey, no one’s perfect. -Megin Smith
Don’t listen to anyone putting you down. You can do it! – Liz Cody
Have fun and be positive
Have fun and don’t stop – Don’t know who made these last two comments … had my eyes down typing!

Candy factor tour adventures for Team Member Thomas! He got paired with older sibling Dalton. FUN! Katie wanted her picture taken with T and L. She loves them …. and they love her. Me, Thomas and Lillian went out for a walk after dinner …. great time!

After dinner walk along the river adventures for Team TLC! Love!

August 2 2013:

“Idiots” ….. Lillian’s descriptive for Atlanta airport TSA …. I’ll take that Lillian ….

Team TLC at 30,000 feet above New Mexico bringing our 2013 Chromosome 18 conference adventure to a close. I’m a Camilla sandwich again!

Home Sweet Home …. Let the unpacking begin! What an absolutely GREAT adventure!

Conference crashers ….. the kind we like! Some of Rick’s friends live in Atlanta. They came to see him and hang out with us some! They just got married and are members of NOAH … National Organization for Albinism and Hypopigmentation. They met at one of the NOAH conferences! Such great people! What FUN that they got to see Rick Guidotti and hang out with us too!

More day after conference pictures …. Lillian, me, Oliver, Thomas … Me and Susan Moran …. Lane, Colin and Thomas … Beautiful people!

Not so great of a picture ….. yet wise and knowing words from the sibling panel ….. “Siblings are okay with things being DIFFERENT as long as their needs are met.” – Catherine Cody Larson …… “There will be more people who stand up for them than make fun of them.” – Unknown ….. and lots of “They can do lots more than we give them credit for” ….. Love these siblings!


August 3 2013:

Last of the Savannah pictures …. More that I took on my morning walks … Such a GREAT time!!

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August 3 2013:

GREAT picture Mark! I was just thinking that I should have taken a picture of this! YAY YOU!! This was our lunch buffet … 402 people!

Photos from the open album  go here …

Last of the 2013 Chromosome 18 conference pictures y’all!

The 2019 Annual Chromosome 18 Conference by Lillian Darnell

August 6 2019:

Lillian is writing her own posts regarding The 2019 Chromosome 18 Conference. Here’s Part 1:

The Annual Chromosome Conference 2019: Part 1

August 11 2019:

Oh my gosh! You have GOT to read this! Had me laughing out loud! And, I didn’t know she had researched the elevators!! HA! She cracks me up!

The Annual Chromosome 18 Conference 2019: Part 2

August 15 2019:

Part 3 of Lillian’s blog post about the conference. She is incredibly dedicated to writing these posts! And, they are very thorough! Hope y’all are enjoying them!

The Annual Chromosome 18 Conference 2019: Part 3

August 18 2019:

Lillian’s recap of the C18 Conference – Part 4!!

The Annual Chromosome 18 Conference 2019: Part 4

August 21 2019:

Lillian is working so hard on these y’all! Thank you to those who are following …. Much love!

The Annual Chromosome 18 Conference 2019: Part 5

September 8 2019:

Part 6 of Lillian’s play by play of the 2019 C18 Conference … Another that made me laugh out loud, more than once … Give yourself the gift of laughter today, go read it!

The Annual Chromosome 18 Conference 2019: Part 6

October 2 2019:

She’s still at it! Always lots of details. Yet, this one is heartwarming and ends HaPpY!! Many photos from the farewell dance party as part of this post! Check it out!

The Annual Chromosome 18 Conference 2019: Part 7

October 10 2019:

She’s winding down! One more after this one. This girl’s got dedication! Part 8 of Lillian’s Conference posts …

The Annual Chromosome 18 Conference 2019: Part 8

October 16 2019:

Last one! She stuck with it and wrote about every single day of the journey to and from the Chromosome 18 Conference!

The Annual Chromosome 18 Conference 2019: Part 9 & Part 10

 

 

 

 

 

 

 

The Salt Flats – Incredibly Gorgeous and Magical

Another I felt deserved it’s own post … The Salt Flats in Utah are incredibly gorgeous and magical feeling!

July 28 2019:

After leaving Salt Lake City yesterday, we stopped by the salt flats for a quick look. I love standing and walking barefoot on the salt. It is quite crunchy in some spots, but the bottom of my feet felt still feel oh so soft. The bottom of my feet felt so good last night. Ahhhhh ….

Check out the cool photo Lillian took of the rest of us. Optical illusion!!

The Egyptian Eye Looking Good

June 5 2018:

Thank you to Hunter at Pixels & Ink! Just back from picking up mounted prints of Lillian’s artwork. They are beautiful and ready to go to their new homes!!! Much gratitude to the beautiful souls supporting Lillian’s fundraising efforts. xoxo

Egyptian Eye Mounted 6.5.18 #1 Egyptian Eye Mounted 6.5.18 #2 Egyptian Eye Mounted 6.5.18 #3

If interested in reading about Lillian’s fundraiser, go here …

Fundraising for the 2018 Chromosome 18 Family Conference – In Summary

The Wise Sultan and the Camel by Lillian Darnell – Family Fundraiser

May 25 2018:

from Lillian ….. to fundraise … xoxo …. “I’ve decided to sell prints or copies of the Egyptian Eye once again to fundraise and help my family attend the annual Chromosome 18 conference. The print will be about an 8 X 10 and mounted on foam board or similar ready to hang.

The Chromosome 18 conference helps me get over my fears and my emotions. It helps me feel brave, courageous, and enjoyable. Here’s an example: Last year in July when my family and I were inside the airport, I was fearful, nervous, tired, and afraid; yet, the view I got from the airplane was amazing and it was all worth it.

Here’s a story inspired by The Egyptian Eye:

Egyptian Eye 8.2012

The Wise Sultan and The Camel

Once many years ago, a camel walked in the Egyptian desert. The camel wondered if it had an Egyptian eye. So the camel passed a wise sultan who was on his way to a faraway land named Butterfly Land.

The camel asked, “Do you know if I have an Egyptian eye? I’ve been wondering for years now.” The wise sultan chuckled and said, “Certainly seems like you have an Egyptian eye but it is up to you to decide.”

The camel said …..

Fundraising for the 2018 Chromosome 18 Family Conference – The Egyptian Eye

The 2016 Chromosome 18 Conference: The Starfish Gala

July 14 2016:

Here are some beautiful people I’m deliriously in love with!!! I am incredibly blessed and thrilled we got to meet face to face and have so many chats Heidi Hulspas!!!!! And please tell Sahara that I will never forget the hugs she shared with me!!!!

So happy to see you Marianna Kuortti!!! Thank you for being you! xoxo …. Plus, a picture of the great schedule for the conference!!

Farewell dance and dinner … The Starfish Gala … Lillian Darnell and some of her friends. Lillian loves her friend Katie and loves staying in touch with Rebecca Parker all throughout the year.

Lillian has a speech impediment and struggles with articulation. Guess what? When one texts, blogs, post on Facebook and Instagram, emails, chats on Facebook, or uses skype; the spoken word is not needed.

In our world of verbal communication difficulties, social media has helped create a world that would not exist for Lillian and one where she has true friends. She has no local friends, yet she has friends all over the United States and the world … As far away as Tasmania, Australia.

Thomas as well. Thomas is unique in his own way and by way of having Lillian as a sibling. He gets to share with other siblings and gets to be mentored by older siblings who have traveled his path. These people are his friends too and every year their friendships deepen. He gets to be amongst others who have long ago released judgments of others. xoxox

Why the Starfish for the Chromosome 18 symbol? This …

The Starfish Story

A young man is walking along the ocean and
sees a beach on which thousands and thousands
of starfish have washed ashore. Further along
he sees an old man, walking slowly and
stooping often, picking up one starfish after
another and tossing each one gently into the
ocean.

“Why are you throwing starfish into the
ocean?,” he asks.

“Because the sun is up and the tide is going out
and if I don’t throw them further in they will
die.”

“But, old man, don’t you realize there are miles
and miles of beach and starfish all along it!
You can’t possibly save them all, you can’t even
save one-tenth of them. In fact, even if you
work all day, your efforts won’t make any
difference at all.”

The old man listened calmly and then bent
down to pick up another starfish and threw it
into the sea. “It made a difference to that one.”

Thanks Missy Baker, Marie McGing, Nora Schaefer, Heidi Hulspus, and Natalie Abreuhorne for sharing your pictures with me!!