July 12 2023
Self-advocates and siblings. ❤️❤️❤️
Beautiful ladies getting ready for the Starfish Dinner & Dance!
July 13 2023
Starfish Dinner & Dance. We love us some dancing!
July 27 2015:
Breaking, Fabulous, Wonderful News!! While I was in a session today, Lillian Left the Room All By Herself, Got On the Elevator, Went to the Lobby, Sat in a Chair and Waited for her Friend to Come Meet Her!!! Holy Heck!!!
If you are out and about tonight or having a night in, please share a toast, a hallelujah, and celebrate with me!!
Wahoooooo!!!!!!!!!! I’m so excited!!! Now! For ladies night! Time to celebrate with some very amazing and wonderful women!
(This was during the 2015 Chromosome 18 Conference. As you can tell, it was incredibly exciting!)
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.
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.
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!
Last of the Savannah pictures …. More that I took on my morning walks … Such a GREAT time!!
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!
October 30 2021
Some news to share. I’ve taken on a volunteer position with Chromosome 18 Registry & Research Society.
Hi. I’m Camilla Downs and I’m looking forward to my role as the new 18p- Coordinator. My name is Camilla Downs (pronounced like Pamela but with a “C”), and I’m a mom to 20-year-old Lillian Darnell and 16-year-old Thomas Darnell.
Lillian has 18p-, being diagnosed when she was 3 years old after the pediatrician suggested genetic testing, due to Lillian being behind in more than three areas of development. The pediatrician called me as soon as she got the results, letting me know over the phone, rather than postponing until we could get in to see her. After pulling myself together, I found the Chromosome 18 Registry that night while searching online. This was before Facebook, and social media groups and I joined The Registry shortly thereafter. I spent time observing the conversations in the Yahoo listserv before jumping in, introducing myself, and asking questions.
The main ways 18p- has manifested throughout the years for Lillian are speech difficulties, chronic stomach pain, proprioceptive issues, balance and depth perception, difficulties with executive functioning skills, and inability to process emotions. In hindsight, I can see she exhibits many symptoms of autism. That is currently being addressed. In the past, she has done speech, physical, and occupational therapy. Currently, she receives craniosacral therapy and just began seeing a therapist begin work on her phobias. All of these issues are still with her.
I divorced in 2007, moving to Reno, Nevada from … Follow the link to read the full announcement …
June 22 2021
It has been 1 year and 8 months (October 2019) since I’ve had respite. I didn’t realize just how much I needed this until right this minute, typing this. I am in tears.
Hallelujah times infinity! Sweet, blessed relief. She is going to try and stay a full 7 days, as she needs respite, too!! 🤣😂
Hot dam*, let’s party! And by party I mean, do nothing. Absolutely nothing. Perhaps extra movie nights. Enjoy the quiet. Extra reading. Extra relaxing. MINUS being needed every 5 minutes. Ahhhhhh ….
And time for some kitchen dancing …
June 29 2021
Lillian came home today, arriving about 1:30 this afternoon. She hasn’t stopped talking since. 🤪 Did she not talk the entire time she was gone? 🤣😂🤣 We were outside taking in the wild sky. Earlier we had a freaky, huge dust cloud blow through and then purple, pink, yellow, and orange colors. Photos to follow.
A couple of “I’m too old for this shit!” messages from my mom, yet, they all made it the full 7 days! Wahooo!!
And then there was this lovely surprise yesterday … Thank you to Helen of Pink Quill Books!! I appreciate YOU! xoxo
“My review for Where Would You Fly? & Other Magical Stories by Lillian Darnell, 5/5 stars.
The first line of the blurb for this book reads:
Welcome to the radiant imagination of Lillian Darnell, a wonderful and unique human being, the kind who comes around only once in every 56,000 births, as she is missing the short arm of her 18th chromosome.
I thought it was the perfect introduction to my review. Her stories are full of imagination and wonder, as you see the world through her eyes from age 4 (written with a little help from her mum, Camilla) to age 16. Some are gentle guides to mindfulness, others to how to be happy, and most are delightful stories with fairies, unicorns, and magic.
I have to admit I found the Emotions and Feelings part particularly touching, where Lillian explores her own emotions while growing up. Her condition, and her journey which led to the publication of this book, are explained in the introduction by Camilla, who is also a wonderful poet, and a beautiful person. Her dedication to Lillian, and her son Thomas, is evident through the stories Lillian has written and the love she has for her family.
Every now and then it’s lovely to get away from the real world and travel to distant lands with mythical beings. Lillian’s book is a wonderful distraction that you can dip into every now and then, and it will put a smile on your face. Many thanks to Camilla, Lillian and Thomas for the chance to read Where Would You Fly?”
To learn more about the book, go here …
February 7 2021
New poem from Lillian Darnell … This made my eyes pool with liquid love .. 🤍❤🤍
Peppermint in the sky above
Smelling like festive mints
sweet scents feel the air
like brown snow
as cinnamon fades
through the dark
Pine trees sway and dance
Like wind and dancers
Spreading the …. Follow the link to read the full poem
February 11 2021
Another new story from Lillian Darnell … xoxo
Once there were two female unicorns named Rosa and Beth who lived in a land called RainbowTopia. The two female unicorns lived with their family and the family all thought all was well or so they thought …
October 23 2020
It is done. I normally wouldn’t take so many pictures. Yet, this was Lillian’s first time. She can’t/won’t wear a mask so she didn’t get to walk it in to the official ballot box at Raleys – took me about 2 minutes. 💙🌊💙
When Lillian reluctantly agreed to register to vote last year while we were getting her ID, she had no intention of voting. I suggested she might change her mind, and this way she’d be ready, just in case. I asked her last night why she changed her mind, deciding to vote. She said, “The United States needs me to vote.” She researched the candidates and the questions for hours. Congratulations, Lillian Darnell!!! 🏳️🌈🏳️🌈🏳️🌈