The 2018 Chromosome 18 Conference – Baltimore, Maryland

The 2018 Chromosome 18 Conference was enjoyed by all three Team TLC members!

We shout a huge and hearty THANK YOU to The For Kids Foundation who paid for my and Lillian’s registration fee and airfare … AND … to friends who supported Lillian’s fundraiser and purchased her book, my book, and Thomas’ book! That covered our food and a wee bit of the hotel stay!! ….. AND … The Nevada Governor’s Council on Developmental Disabilities’ Consumer Leadership fund which covered the remainder of the hotel stay!

We are deeply and incredibly grateful for everyone’s support and loving kindness in making sure that we got to the conference this year! The conference is always packed with tons of useful and informative sessions and is a once per year chance for Lillian to see her friends face to face. Friends who get her, who are like her, who laugh at her jokes, and just giggle with her for no reason! Attending the conference every summer inspires and encourages Lillian to face fears and accomplish goals … As you will read about below.

Oceans of love to all! xoxo

June 29 2018:

We made it! Almost all of us anyway. One suitcase was a flight behind us. One piece of luggage made the flight and one missed it. Hmmmm.

Beautiful Sue Rose Bentivenga met us with a smile and gave us these gorgeous flowers to brighten our room while here.

I’ve been up since 3:00 am PST. I may just pass out after we actually eat. We’ve not had a meal since our cereal at 3:30 this morning.

Yet. Yay we’re here. And. Oh my gosh. My seat mate from Vegas to Baltimore. Just wait. I’ve got to process it all. Then, I’ll share.

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June 30 2018:

Thomas and I toured the USS Constellation this morning. Had to come back to the room to cool off. I was dripping more sweat than I have since moving from Mississippi! Holy heck!! I love our dry heat in Nevada!

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After coming back to the the room and cooling down, Thomas and I went to see the USCGC Taney. I’d rather be touring a forest or arboretum, yet, this brings joy to Thomas. So, two more ships tomorrow.

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One more shout out to Sue Rose Bentivenga!!! She and her daughter drove to the airport yesterday evening to pick up the piece of luggage that missed our flight. And then they delivered it to us.

And, a side note … If I had been in charge of driving us in that traffic and the style of driving here, I would have crawled under my seat and cried. We needed a Jersey native driving us through that craziness! Sue was a pro!!

Loving kindness is in the air! Thank you sweet Sue!!! Oceans of gratitude for supporting Lillian too!!! We’re so happy to hear y’all are enjoying it!!

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July 1 2018:

Last tour for Thomas and I yesterday. Seven Foot Knoll Lighthouse. I’ve always dreamed of living or staying for a while in a lighthouse. The work of it sounds difficult yet the beauty is amazing. Now. That’s tiny house living!

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July 1 2018:

Today with Thomas was the Lightship Chesapeake. I think I’m done stepping out into the million degree sauna. 😜😂

We toured one more after this one. So glad I did this with Thomas! Even though I almost suffocated! 🙃😜

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July 1 2018:

Lillian signing books! We are super grateful!!

Chromosome 18 Conference 2018 Baltimore Maryland 7.1.18 #60 Lillian signing books

July 1 2018:

Today with Thomas was the USS Torsk. Last one! I think I’m done stepping out into the million degree sauna. 😜😂

This one tested the ole claustrophobia. I did good. Came close to a panic attack due to the heat, confined space, and so many people ahead of us blocking the way out! This was good for me as I was able to confront it, breathe, drink water, and know that I was okay, and not suffocating! So glad I did this with Thomas! 🙃😜

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July 1 2018:

Best friends! Together again! Macy Miller and Lillian. Someone asked if they are twins! They both love to laugh and giggle!

Chromosome 18 Conference 2018 Baltimore Maryland 7.1.18 #71 Macy and Lillian

Chromosome 18 Conference 2018 Baltimore Maryland 7.1.18 #81 Macy and Lillian

We had dinner with The Miller’s and just look at these two lovelies! The Giggle Duo, indeed! Look how happy they are! Lillian and Macy = Happy to see one another after a year apart!

July 2 2018:

First conference for Jaclyn. She is very excited to meet other people who have an 18p- diagnosis. And! Excited to have one of Lillian’s books!! Thank you to Jaclyn and to Mike Fudala for supporting Lillian. Much gratitude!!!!

Chromosome 18 Conference 2018 Baltimore Maryland 7.2.18 #82 Jaclyn and Lillian with Where Would You Fly Book

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Horrible lighting! Great and wonderful people!Love these Miller folks! Always so kind! And their Macy and my Lillian are The Giggling Duo.

Chromosome 18 Conference 2018 Baltimore Maryland 7.2.18 #83

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Lillian just went out to eat with a group of friends. Alone. Like. Without me. FIRST TIME she has joined the self advocates doing anything! YES!!! Hallelujah!!

She typed her order in her phone before leaving so she can show it to the host. I put money in her name badge and texted her instructions for paying her bill after explaining verbally how to pay.

She’s worried. And keeps texting me. Yet, at least she finally took that first step! The hardest one! Wahoo!!

Lillian and Camilla May 2018 Date Day 5.22.18 #9

(This post received 242 likes/loves/wows and 142 comments on facebook. Deep gratitude for everyone cheering for Lillian!)

And the below post announcing the success received 121 likes/loves and 31 comments! Thank you everyone!

Chromosome 18 Conference 2018 Baltimore Maryland 7.2.18 #84

July 3 2018:

Here’s another first!! Lillian has never participated in the self advocate panel!!! Listening. A first step!! Wahooo!!!!

Chromosome 18 Conference 2018 Baltimore Maryland 7.3.18 #85 Lillian text about self advocate panel

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Thomas and his buddy Kellan at lunch today. Thomas loves chatting with Kellan.

I’ve had two different people reply to my response of “Thank You” with: “Ah, no worries. We’re family.” Loving kindness is a beautiful thing.

Chromosome 18 Conference 2018 Baltimore Maryland 7.3.18 #86 Thomas & Kellan

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I’m a wimp. This is how I spent ladies night. A nearly scalding hot soak in the tub followed by a cold water cool down; while Thomas had dinner with his friend. Then, hanging with The Giggling Duo. They think I’m funny.

Chromosome 18 Conference 2018 Baltimore Maryland 7.3.18 #87 Camilla Ladies Night

Chromosome 18 Conference 2018 Baltimore Maryland 7.3.18 #88 Camilla Ladies Night and Macy and Lillian

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18p- Friends

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July 4 2018:

Thomas and Alex on the sibling panel. There were about 20 siblings ranging in age from 10 – 35 years old.

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More friends …… After group photos.

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Dinner and Farewell Dance!! What an incredible blessing all of these people are …. to one another ….. and the World!!!!

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July 4 2018:

Group photo. Clearly not everyone. Yet, a whole heck of a lot of us!!!! Lillian and I are definitely in there. Hopefully, Thomas is too!

I think the total was around 350. I’m sure The Registry will post official numbers soon. Love these wonderful people! (This is not my photo. I think it was taken by Rick of Positive Exposure or Stacey Gallardo.)

Chromosome 18 Conference 2018 Baltimore Maryland 7.4.18 #127 Group Photo

July 5 2018:

One last visit to The Inner Harbor. We didn’t even last an hour out there. Whew!!! 🔥🔥🔥

But. We got to walk down the opposite side this time. And found a wee bit of nature to photograph.

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July 5 2018:

Nearly home! YaY!!!

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July 6 2018:

Fear of escalators: We’ve always had to use the stairs or elevator when Lillian was with us in the past.

No longer! Lillian rode the escalator on Friday, the 29th, at the Reno-Tahoe Airport! She held tight to me and was worried. Yet, she did it! The ultimate goal is to ride the escalator without me beside her. Wahoooooo!!!!xoxo

Lillian Rode the Escalator Post 7.6.18

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During the Chromosome 18 Conference there’s always an ongoing silent auction and all money stays with The Registry. I usually bid on a couple of items; yet, they quickly surpass my wee budget.

Not this time! I won this clutch bag and tote hand made in Guatemala using recycled materials. I can still feel the excitement in my chest for having won something so full of love, color, and beautiful energy!

The clutch bag can be used alone or thrown in the tote bag so to have handles. It’s just my size purse. Thank you so much Ivette Ruiz for donating this treasure to the auction and for supporting native people in Guatemala!

I also bid on a pair of boldly colored and beautiful oven mitts handmade in Kenya. We were blessed with attendees from Kenya and they donated some beautiful items. Missed out on those beauties, yet all for a good cause!!!

Clutch & Tote Bag Won at C18 Conference 7.6.18 #1 Clutch & Tote Bag Won at C18 Conference 7.6.18 #2 Clutch & Tote Bag Won at C18 Conference 7.6.18 #3

July 7 2018:

Another fear bites the dust. In the past Lillian has chosen to walk throughout the airport attached to my arm. Not the easiest for me while pulling a carry on bag plus her bag.

When we got to the airport in Baltimore readying to leave, I explained I needed her not to hold onto my arm and to just walk beside me.

After sighing, she said “Okay”. And did just that. Throughout the entire Baltimore, Vegas, and Reno airport!

PLUS! This included the HUGEST fear at the airport ….. The PBB. She walked through the passenger boarding bridge NOT attached to me!!! She stepped from the PBB into the airplane NOT attached to me AND walked the aisle of the airplane NOT attached to me!

Hallelujah!! Ahhhhhhh …. Freedom for both of us!!! (Picture from 2016 – Another first! First time catching air for a photo!)

Damonte Ranch Walk 9.13.16 #4

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Do you have a game plan? On the four hour flight from Vegas to Baltimore I sat next to Mark Everest.

For nearly the entire flight we shared about his family – wife, daughter, son, grand daughter -, books he’s written, his company, his workshops and speaking, his hippie friend who lives above Santa Monica. And I shared about the conference, Chromosome 18, my family, Thomas and Lillian, our books, my path.

Then we talked about Stephen Covey, Zig Ziglar, Earl Nightingale, Charlie Tremendous Jones, Wayne Dyer, Deepak Chopra, and some I’m forgetting.

I just read the first 50 pages of his first book which he gifted to me. Quote from the book, “Strength does not come from physical capacity. It comes from an indomitable will.” -Mahatma Gandhi

I shared with him I am most likely the most Woo Woo person at the conference; he said, “You are needed there.” This same comment was repeated to me by someone dear to me on the last night of the conference. Messages it did my heart good to hear!

It’s a wonderful feeling to truly connect with others. I feel we bless one another and are sharing a gift with one another when we do this. Now. That’s what I call a Gameplan!! And, that’s my GamePlan!

Game Plane Book Mark Everest Airplane to C18 Conference 7.7.18

July 8 2018:

Okay. Here’s the last one …. For this time around … Thank you to everyone for celebrating in our joy of laying to rest some fears and for having many firsts!!

While in the airports on the way back home, Lillian went into the airport restrooms without me!! We went from the first traveling experiences all those years ago of having to travel with post it notes to cover up the automatic flush sensor, to going in alone!! Yes, Yes, Yes!!!

Much gratitude to our friends and family for celebrating these seemingly small, yet HUGE, accomplishments at 16 years old for Lillian!! Wahoooo!!!

 Lillian South Valleys Library 9.13.17

 

Lillian Signing Books – Where Would You Fly in Baltimore

July 1 2018:

Lillian signing books at the 2018 Chromosome 18 Conference in Baltimore last month! We took 15 books with us and came home with one! We also took a handful of mine and Thomas’ books and only came back with two of those! We are super grateful!!

Chromosome 18 Conference 2018 Baltimore Maryland 7.1.18 #60 Lillian signing books

Go here to learn more about each of our books:

Where Would You Fly and Other Magical Stories

Biggest Little Photographer

D iz for Different – One Woman’s Journey to Acceptance

Camilla and Lillian Update for Chromosome 18 Conference in Baltimore and the Fundraiser

June 23 2018:

Lillian and I share that Lillian would like to have a birthday party in Baltimore so that she can actually celebrate in person with her best friends.

And we talk about Lillian selling her artwork as a fundraiser … http://lilliandarnell.com/…/fundraising-for-the-2018-chrom…/

Thanks so much everyone! xoxo

 

My Heroine and Flying to Baltimore

June 20 2018:

“These pages burst with Lillian’s loving attitude, kind solutions to problems, and a beautifully whimsical experience. Soak up her creative stories and poems. It will open a new window to the world.” – Kasey C., Florida

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June 22 2018:

Look what arrived yesterday! These will be flying to Baltimore with us next Friday! And she flew, and she flew, and she flew …. xoxo ….

Order of Where Would You Fly Books 6.22.18

To learn more about Lillian’s debut book, go here … Where Would You Fly

Lillian and Thomas Talk on the Phone

**THROWBACK POST**

April 26 2010:

Listening to Lillian talk to Thomas on the phone! What a hoot!

He keeps asking her questions & doesn’t understand her answers. He can’t read yet so she can’t send a text message!

I hear him saying the same things I say to her, “Just say yes or no”!! If he were here he would be telling her “Go get your phone/device and tell me”! This would be sad if I didn’t choose to have a sense of humor about it!!

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

A Flower’s Curious Emotions by Lillian Darnell

June 2 2018:

A story inspired by the Chromosome 18 Conference. ….. from Lillian …  xoxo

Once many years, a little girl named Rainbow loved traveling to new places. One day, Rainbow decided to write a story. “Hello! My name is Rainbow. My family and I have been going to a conference called Party Dancers for many years”, wrote Rainbow.

One day at the Party Dancers, she faced many fears in just 1 day. Rainbow was very determined to conquer more fears. A couple of years later at the Party Dancers, Rainbow met a friend she connected with through Bookworm the previous year and had so much fun. Rainbow knew many friends and people that year.

Rainbow even tried to get in the cold pool. This year, Rainbow was pumped to go …..

Fundraising for the 2018 Chromosome 18 Family Conference – Rainbow of Emotions

Rainbow of Emotions by Lillian Darnell – Fundraising

May 30 2018:

Rainbow of Emotions … Another from Lillian … She is fundraising to help attend the Chromosome 18 Conference next month. This is the 2nd piece she’s offering as a print. The first was The Egyptian Eye.

I’ve decided to sell prints or copies of Rainbow of Emotions once again to fundraise and help my family attend the annual Chromosome 18 conference. The print will be about an 8 X 10 size 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.

The really fun part is that YOU get to choose your own price! The base price is $25 to cover cost of printing, mounting, and shipping (US Only – Our overseas friends can email my mom at Camilla Downs @ gmail.com if you’re interested in purchasing a print).

Use this Paypal link and enter your own amount over the $25 base price. For example, if you want to donate $50 towards my fundraiser, then you would enter $75. Go here.

OR …. If you simply want a photo quality print, the base price is $15 to cover cost of printing and shipping. For example, if you wish to donate $25 to my fundraiser, then you would enter $40. Use this Paypal link. (Please note whether you want “Just the Print” or “Mounted Print”)

Here’s a story inspired by the Rainbow of Emotions:

Rainbow of Emotions Lillian Absract Art

A Flower’s Curious Emotions

Once long ago, there lived a flower named Rainbow who was always emotional. One day, the flower was very curious about why she was so emotional.

So the flower went to a wise flower named Emotions but liked to be called Lavender instead. When Rainbow got to Lavender’s home, Rainbow asked, “Why am I so emotional, Lavender?”.

Lavender laughed and said, “You are emotional because you are always inside any living thing but I can give you some wisdom if you think it will help”.

“Yes, I think it will help me better understand. I trust you and your wisdom.”, said Rainbow in excitement. So Lavender said, “The princess who owns the sky is sometimes called Rainbow of Emotions and she watches over you. Your emotions are actually inherited from the princess. I hope that wisdom helps.”

Rainbow said, “Thank you! That helps. Now I am very grateful for the princess’ emotions.” So Rainbow walked off happily. So if you ever see a rainbow or feel any emotion, chances are you could be experiencing either Rainbow’s emotions or the princess’ emotions.

That’s the end of the story.

Visit the link below to read further …

Fundraising for the 2018 Chromosome 18 Family Conference – Rainbow of Emotions