She Did It! The 2018 Chromosome Conference – Baltimore Maryland

Lillian faced many fears and had many firsts this year at conference. Each year, each conference she makes wonderful progress! Go Lillian Go!!

Not to mention a FIRST of selling and autographing her first published book!! Wahooo!!

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

July 2 2018:

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

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

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

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

Best Friends – Together Again – 2018 Chromosome 18 Conference in Baltimore

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

July 1 2018:

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 3 2018:

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

July 4 2018:

Chromosome 18 Conference 2018 Baltimore Maryland 7.4.18 #111 Farewell Dinner & Dance

Chromosome 18 Conference 2018 Baltimore Maryland 7.4.18 #95 Farewell Dinner & Dance

Chromosome 18 Conference 2018 Baltimore Maryland 7.4.18 #115 Farewell Dinner & Dance

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 … https://lilliandarnell.com/…/fundraising-for-the-2018-chrom…/

Thanks so much everyone! xoxo

 

Happy Day and Happy World and Biggest Little Photographer

June 25 2018:

Oh, Happy Day!!! It was the perfect day to mail a “Happy World” print way, way, way down to da bayou! Happy and joyful gratitude to our helpers!!

We’re in the final stretch! Do you know anyone who would enjoy receiving a Lillian print? The Egyptian Eye, Rainbow of Emotions, Rainbow Balloon, Happy World, or Rainbow Mandala.

Mailing Happy World Print 6.25.18

June 27 2018:

Sunshine directly onto LaRue as I entered to pick up additional copies of Thomas’ book. I’ll take that as a beautiful message. Biggest Little Photographer is headed to Baltimore with us Friday morning. Thanks LeRue Press!

Biggest Little Photographer Book from LeRue 6.27.18 #2 Biggest Little Photographer Book from LeRue 6.27.18 #3 Biggest Little Photographer Books from LeRue 6.27.18 #1

Mounted Happy World Delivered at the Library

June 27 2018:

Taking care of three tasks at once! It was volunteer day for Lillian and I at the library. Plus, we delivered “Happy World” to Theresa Garcia Grant! (You know she’s a seasoned special needs parent when she asks if it’s okay to give Lillian a hug … For those that don’t know, Lillian prefers no hugs so she’s grateful that people ask.)

Sorry we were rushed Theresa and biggest gratitude to you for supporting Lillian and her fundraiser! Plus! Thomas went with us to choose magazines for the trip. We were a Team TLC whirlwind at the library this afternoon!!

Happy World Mounted Print to Theresa 6.27.18

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

************

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

Wilderness Camp and Overnight Camp

June 12 2018:

Wilderness Adventure Camp for Thomas! His 5th year attending this camp and last year in this age group. Look how gorgeous! Just adore this place!

We are incredibly grateful to Great Basin Institute for the scholarship. He always loves these camps and enjoys the hikes! Plus, Thursday night is tent camping for a night!

Wilderness Adventure Camp for Thomas 6.12.18 #1 Wilderness Adventure Camp for Thomas 6.12.18 #2 Wilderness Adventure Camp for Thomas 6.12.18 #3 Wilderness Adventure Camp for Thomas 6.12.18 #4 Wilderness Adventure Camp for Thomas 6.12.18 #5 Wilderness Adventure Camp for Thomas 6.12.18 #6

June 14 2018:

Overnight camping for Thomas tonight! So happy he gets to do this!! Thanks Great Basin Institute!!!

Thomas Overnight Camp 6.14.18

A Taste of India and A Fall Backwards

June 16 2018:

What a treat for Thomas and I tonight. A Taste of India dinner at Moon Rabbit Cafe. This is a Pay-What-You-Can Cafe and all the proceeds stay with the center.

For starters, Alootikki with onion and mint tamarind chutneys. Followed by chicken Biryani for Thomas and veggie Biryani for me. Finishing with a sweet Basmati rice pudding and a hot cuppa Masala chai tea.

Deep gratitude to chefs Nick Purewal and Jay Modha!!! Where do these amazing chefs usually cook? Anyone know? This food was absolutely amazing!!! Thank you Reno Buddhist Center for tonight’s A taste of India dinner!!!

Dinner with Thomas Buddhist Center 6.16.18 #1 Dinner with Thomas Buddhist Center 6.16.18 #2 Dinner with Thomas Buddhist Center 6.16.18 #3 Dinner with Thomas Buddhist Center 6.16.18 #4 Dinner with Thomas Buddhist Center 6.16.18 #5 Dinner with Thomas Buddhist Center 6.16.18 #6 Dinner with Thomas Buddhist Center 6.16.18 #7

After our lovely dinner Thomas and I stopped by Audrey Harris Park.

Do I look like I just had a serious physical trauma? I slipped backwards on the rocks on a downhill slope while trying to take a photo and fell so dam* hard on my bottom that I nearly passed out.

Had to lay in the car until the dizziness subsided. I was going to leave once I was able to drive, yet Thomas knows that taking photos feeds my soul. And he probably sensed I needed a bit more time. Holy he**!!

Falling hard on your butt is a most excruciating pain in the butt!!! Think I may wake up with whiplash too. Oh my gosh!

Beautiful view though!!!

With Thomas After Dinner at Buddhist Center Audrey Harris Park Day of my Fall Backwards 6.16.18 #1 With Thomas After Dinner at Buddhist Center Audrey Harris Park Day of my Fall Backwards 6.16.18 #2 With Thomas After Dinner at Buddhist Center Audrey Harris Park Day of my Fall Backwards 6.16.18 #3 With Thomas After Dinner at Buddhist Center Audrey Harris Park Day of my Fall Backwards 6.16.18 #4 With Thomas After Dinner at Buddhist Center Audrey Harris Park Day of my Fall Backwards 6.16.18 #5

June 18 2018:

Second day post fall – Parts of the body that hurt when one falls backwards on a downward slope, landing hard on one’s bottom: Ankles, calves, knees, thighs, bottom, lower back, upper back, elbows, palms of hands, shoulders, upper back, neck.

And, it hurts one’s bottom when one sneezes! When one has this type of fall, sneezing should be outlawed. No more sneezing!

Plus, a PSA: Flip flops DO NOT mix well with loose rocks on a downward slope when one decides to squat so as to get the perfect photo. 

However, I do feel better and by week’s end should be much, much better!! xoxo

**July 18 2018: Update – I’ll be seeing a doctor next week so as to get a referral for craniosacral therapy (OT) and perhaps a bit of PT to make sure I’m all good from the fall. I have not seen a doctor in about 10 years so this will be interesting … xoxo