November 23 2034
Late posting these. We had a blast 💥 with the traditional Chromosome 18 Halloween Zoom dance party! Y’all know we love us some dancin’! 🖤🖤🖤
November 15 2024
It’s a vein! What a blessing that they can use an ultrasound to find veins! No more traumatic experiences for Lillian. Three hours later and we were successfully outta there! Fingers and toes crossed that this CT with contrast gives us answers to the stomach and lower abdomen pain. 🙌🙌🙌
February 27 2024
My poetry friends sang me Happy Birthday last night, and treated me like a Queen. ❤️❤️❤️ Full house last night, with wonderful poetry shared.
Lillian wrote a poem for me; which I shared. It was a hit! (Lillian is my 22 year old special needs daughter) She totally understood the assignment. 😁
The mermaids of the sea bow down
To the queen of the oceans
Bravely dancing
In the seas of love and the heart of kindness
Dances the braveness of the mermaid
Of my heart of friendliness
Swimming into the dancing sea of stars
The mermaid dances to the song
Of life bravely and free
To the mermaids of sea
Lillian Darnell – 2024
I wrote a poem titled, “Me”. I’ll share that one in a separate post.
February 15 2024
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.**
December 24 2023
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.”
July 13 2023
Starfish Dinner & Dance. We love us some dancing!
July 13 2023
So much love,
So much joy,
So much good stuff.
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. 💜🌿💜
Extra photos:
July 12 2023
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!
July 11, 2023
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.” ❤️❤️❤️
July 10 2023
Quick walk this morning before helping facilitate the New Family Orientation. Gorgeous weather and grounds. 🖤🌿🖤
Don’t forget Rick photos
July 8 2023
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. 💛💛💛
