Finally getting the endoscopy done! The nurses here are amazing. They used an ultrasound to find a good vein so Lillian Darnell didn’t get poked multiple times. Yay Lillian!!! And thank you clonazepam for helping Lillian not be anxious!! 🤣🤣🤣
**And if you’re that lady who sent me an email the last time I posted about Lillian conquering her fears, please Go Fuck Yourself! You don’t know me, or my kids. If you did, you would not have sent me a message that I use my kid for clicks and to get attention. Plus, Lillian is a woman. She is 22 years old! Unsubscribe from my blog and go away.**
I always love the Chromosome 18 card. Check out the quote on the back of this year’s card. ❤️💚❤️
“The journey from Lillian being diagnosed at 3-years-old to where we are now at 22-years-old would have been immeasurably more difficult and lonely if not for The Chromosome 18 Registry & Research Society. The Registry has blessed our entire family with critical information, research updates, hope, fun, friendships, and the family we never knew we needed.”
This is Jonah. He is amazing, and I love his outfits, and I love his wonderful family. ❤️❤️❤️
Amy, Julie, and me. Our girls love one another, and I love these ladies!
Tara and Isaac. Thomas and I love you!!
And the happy winner of the book package! Thank you to the authors who contributed your books!
Swimming before leaving for our flight later today.
Thomas went with Christopher and his dad, Bill, to the Air Museum, followed by lunch while we hung out here with Liz, Charlotte, and Kelsey. We ordered pizza and had lunch by the pool.
Bill invited Thomas to come along with he and Christopher to the National Museum of the US Air Force. They had a good time. 💜🌿💜
Look at this amazing book and card package in the silent auction! Thank you to the authors who contributed to help support the Chromosome 18 Registry & Research Society.
C18 Sibling Panel: All of these sibs are amazing. However, I am deeply biased towards the one on the far right. Thomas, you bless my heart beyond comprehension. You did an amazing job, articulating your points beautifully, and that’s probably the first time in history that the word innocuous was used on the sibling panel.
Thank you to everyone who came to me afterwards with such lovely words to share about Thomas, and my parenting skills. ❤️❤️❤️ Everyone very much appreciates your authenticity and transparency, Thomas. Kendall Powell is an amazing person, and absolutely shines as the sibling coordinator. Thank you for loving us, Kendall!
Getting everyone ready for group photos. 18p- over here!!! The hardest part of the conference!
And photos with the amazing Millers. Love you Matt and Julie. You two did a wonderful job hosting this year. I love me some Miller time!! ❤️❤️❤️
Self-advocates and siblings. ❤️❤️❤️
Beautiful ladies getting ready for the Starfish Dinner & Dance!
Beautiful spot for coffee this morning. I feel like a bit of relaxing this morning.
July 11 2023
Ladies night was so much fun!!! Talking, laughing, and drinking with such beautiful people. I sat back at one point just scanning the room, looking at everyone deep in conversation, laughing, smiling, hugging; and I thought to myself, “This is incredibly beautiful.” ❤️❤️❤️
Team TLC is on board, on our way to the C18 conference in Columbus, Ohio. ❤️❤️❤️ Thomas is in front of us. By the way, Reno-Tahoe Airport is a cluster fuck right now. 😱😡😱
Beautiful Reno sunrise as we left this morning. 💛💛💛
I’m looking forward to my role as 18p- coordinator. My name is Camilla Downs (pronounced like Pamela, but with a “C”), and I’m 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 to begin work on her phobias. All of these issues are still with her.
I divorced in 2007, moving to Reno, Nevada from Tacoma, Washington. (Hey single parents out there. I see YOU!!) We’ve attended the yearly Chromosome 18 Conference since 2009, when it was in Las Vegas. It was so close, within driving distance, I just had to go check it out (Vegas is an 8 hour drive south of Reno). I was hooked, and we haven’t missed a conference since then.
The Registry has been deeply meaningful to us, by way of education, resources, research, and friendships with others who help us to know we are not alone. Thomas participates in the sibling track, and sibling events in between conferences. He also attends our local Sibshops events, and is in training to become a Sibshop Leader. Lillian’s closest and dearest friends are her 18p- friends, met at conference. They stay connected throughout the year via social media, texting and video chats.
(Thomas July 2021)
In honesty, Thomas and Lillian have a strained relationship. Thomas discusses this with his therapist, among other topics, and Lillian has been discussing it with her therapist. I am hopeful that with time and understanding they can move through this current phase.
I was a paralegal for ten years before Lillian was born, ending my career as a paralegal in the Civil Division of the Pierce County Prosecutor’s Office in Tacoma, Washington in 2001. After that, my husband and I co-owned a construction company.
After divorcing in 2007, and moving to Reno, I taught myself everything to know about blogs, blogging, and social media. I became a Social Media consultant to local businesses, teaching a couple of times at UNR’s Extended Studies. After tiring of doing this, I became certified as a Coach to assist special needs families, and published my first book, D iz for Different – One Woman’s Journey to Acceptance. In addition, I became certified as a Reiki Master.
I then moved on to substitute teaching at my kids Montessori school for 3 years. When they both moved to homeschooling, I shifted to becoming my community’s go to pet sitter, and dog walker. We moved from that community in late 2019, and in February 2020 I officially became a Shared Living Provider/Host Home Provider for Lillian (meaning that I get paid). I also manage and facilitate a venue that interviews authors around the globe, MeetingtheAuthors.com.
(All Team TLC Books to date)
Lillian’s book, Where Would You Fly and Other Magical Stories, was published in 2018. Thomas’s book, Biggest Little Photographer, was published in 2016. And, my latest book, Words of Alchemy, was published in 2019. Lillian also has an etsy shop with her artwork for sale – https://www.etsy.com/shop/LilliansImaginarium.
(Lillian when she received her proof book 2018)
Lillian graduated in June 2018. Thomas is in between what is traditionally the 10th and 11th grade. These days I spend a great deal of time advocating for the two of them, putting great amounts of time into researching and educating myself. Thomas has just recently been diagnosed with depression, anxiety, and autism. Lillian is due to be tested for autism in January 2022, which I am pursuing so that she can have access to certain therapies.
(Lillian high school graduation May 2019)
Please reach out to me any time. I’m ready to do what I can.
Blessings,
Camilla See It. Share It. BE IT … Spread Love Everywhere You Go!
“Words of Alchemy”, published December 2019, is a free-verse poetry memoir covering the last 6 years of my life. The poetry of nature, the poetry of healing, the poetry of appreciation, the poetry of love, in one beautiful book.
Amazing news! My 20 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” was published January 2018. Learn more and order here.
Wonderfully exciting news! My 15 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.
This one made my eyes sweat … Another of Lillian’s fairy tale emotion stories. The morning before she wrote this one, I was in a grumpy mood. Many times she will hook into this and catch a ride on the grumpy wave.
She was yelling at Thomas telling him that they had made me angry. I explained to her that no one made me angry except for myself with my own thoughts.
And then later in the afternoon, I read this story she wrote. As with many fiction stories that are sparked by the author’s reality, Lillian’s have a thread of her own reality running through each one. It warms my heart and causes my eyes to sweat …
I’m thinking that the series that she’s writing will be that book I mentioned she and I would write. I’m thinking Mr. Happy Tree will be the narrator (a fabulous tree that Lillian drew last spring or summer). **December 2020 Note: In fact, this story along with Lillian’s writings from age 5 – 16 years old are included in her debut book, Where Would You Fly and Other Magical Stories.**
Angry Candy Story
Once upon a time, there lived a red chewy candy who was always angry and her name was Angel. One day, Angel got angry for some unknown reason. Her candy buddies decided to investigate what could have made her angry but first, they had to look for some possible clues.
While they were investigating, Angel met with her candy friend, Sneaky Spice-Rika who was always acting innocent but Sneaky was hiding something from Angel. The investigators found strawberry flavored licorice, spices, and mint candy. So they went back to their club called Secret Detective Club to plan their next step of the mystery.
They put together a list of suspicious candy suspects with other candy suspects to talk to. The candy suspects’ were Sneaky Spice-Rika, Strawbella, and Sugarlicious. They set out to talk to Sugarlicious first. “I did see something very unusual, odd, and peculiar this morning.” said Sugarlicious, “I saw Sneaky Spice-Rika near Angel”. So the buddies said,”Thank you”! and moved on to talk to Strawbella but apparently she didn’t see anything strange. Finally, they talked to Sneaky Spice-Rika and she said she was only near Angel to talk to her. So they went to Angel to get more facts and she said it was to comfort her. So the investigators went on to explain the whole story.
When Angel had heard the whole story, she chuckled and explained to them that no one had made her angry but herself. She also said that she had a bad argument with her candy parents, Coca and Choc. The investigators went back to everyone what they had learned. First, they stopped by Sugarlicious to tell her what she had thought was actually an act of kindness. Next, they stopped by Strawbella to tell her that Angel had been angry and she was made angry all on her own.
Lastly, they visited Sneaky Spice-Rika to apologize about suspecting her. The investigators thanked her for being such a great friend. Angel forgot about being angry and never got angry again. If you look closely, you can see Angel in any chewy red candy you or your friends eat.
I hope you enjoyed this story. Join us every Friday for the newest edition of Emotions With Animals!
See the full story on Lillian’s blog, by going here …
Blessings,
Camilla See It. Share It. BE IT … Spread Love Everywhere You Go!
“Words of Alchemy”, published December 2019, is a free-verse poetry memoir covering the last 6 years of my life. The poetry of nature, the poetry of healing, the poetry of appreciation, the poetry of love, in one beautiful book.
Amazing news! My 19 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” was published January 2018. Learn more and order here.
Wonderfully exciting news! My 15 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.
