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. 🙌🙌🙌
October 5 2024
I forgot to share Lillian’s birthday pictures. Good times were had!! 🎉💖💖💖🎉
July 6 2024
3:00 am, home to the airport, then to Phoenix, now to Charlotte. Imma need a massage when we arrive. 🤪
July 6 2024
After a most unfun travel experiences we finally arrived at 4:30 pm EST yesterday. With sweat dripping down my back waiting for the hotel shuttle at the airport, a different hotel shuttle gave us a lift, as ours seemed to be invisible. 😝 That man was a savior, after having left this heat and humidity in 1990, I cannot do it anymore. Feels like I’m suffocating. 🥵
At the Reno airport as we were headed through pre-check, it was discovered that I put Thomas’s year of birth for Lillian’s on her reservation. Damn. 🤪 Had to go back to ticketing to get that fixed. Both of our flights left and arrived on time. So that was great! 🎉
The friends are reunited!! Love these ladies!!
Thomas and I had a delicious, filling dinner after having gone all day with no meals.
After that the hugs, smiles, and laughter began, and continued until 10:30. Ready for another fun, hug-filled day!! ❤️❤️❤️
July 7 2024
Day 1: More conversations, more fun, more laughter, more joy, more happiness. ❤️
Plus, a performance by the Bouncing Bulldogs Jump Rope Team. 🙌
July 8 2024
Day 2: Good times! 🎉💖🎉
July 9 2024
Day 3 began with fire alarms and a full hotel evacuation. I had to go retrieve Lillian from the room, exiting with her being barefoot in her nightgown. 😱
Then parent panel, where sibs got to ask questions of a few of us parents. Later was ladies night and a luau for the self-advocates.
Fun times!! 🎉🎉🎉
July 10 2024
Day 5: Sibling and self-advocate panel, group photos, and Starfish Dinner & Dance. 🎉❤️🎉
Rick Guidotti’s of Positive Exposure’s photos:
June 18 2024
18p- Awareness Day!! Let’s wear pink today! Post your pictures here and everywhere you’re online. 🩷💕💞💓💗🩷
Let’s see your pink! What is 18p-? Ask me! 💋💋💋
April 13 2024
I need to turn the spotlight on Lillian Darnell for a moment, as I am super proud of her.
She had a nurse appointment for a shot on Thursday. The nurse asked Lillian if she would get onto the exam table. Lillian began to tell her that she needed the step pulled out. Nurse didn’t wait for Lillian to get out what she needed to say, assumed she didn’t want to get up there, saying, “Oh, you don’t want to get up there? That’s fine.”
Lillian raised her irritated voice, telling the nurse that’s not what she said, and pointed at the pull out step, saying again that she needed it to get up there.
I kept my mouth shut, letting her set fire to the air in that exam room. You go Lillian. You go! Be seen, be heard. (Also, we LOVE nurses. They are amazing!)
**For those who don’t know, Lillian is my 22-year-old daughter. She has a chromosome deletion (18p-), autism, anxiety, and mild intellectual disability. She has articulation difficulties and a stutter, making her difficult to understand. The past few years I have been guiding her to correct others when they misunderstand her.**
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.”
November 16 2023
There’s no stopping her now! Abdominal ultrasound slayed. Labs from two weeks ago are fine. GI next week, with more labs, and another (different) ultrasound to follow. We are gonna figure out what’s going on so Lillian can fully enjoy this life! I’m just so thrilled Lillian is ready to do this! ❤️🎉❤️
