**THROWBACK POST**
December 25 2012:
Thank you, Thank you Team Member L for the face hurting belly laughs. Just had me and Grandma Patty laughing til it hurt trying to figure out what the heck she was trying to say about her fork and oranges.
Having a sense of humor = Embracing Life!!
(Lillian – May 2012)
**THROWBACK POST**
December 30 2008:
Lillian’s Christmas Eve post
Christmas is one more day.
The End!
Original posts can be found at Pink Elephant Books.
**THROWBACK POST**
July 17 2013:
What I heard her say, “Last night I got a tattoo”.
What she really said, “Last night I had pineapple”.
Many of you know of Lillian’s speech impairment due to a Chromosome 18 deletion. Around here, we choose to make light of it and to lighten the mood we will repeat back what we thought we heard Lillian say.
It always brings laughter and then the serious business of figuring out what this beautiful young lady really said! Onward with the laughing y’all! I’m in a bring-on-the-laughter-mood today … My soul is asking for laughter today!!
(Lillian July 2013)
**THROWBACK POST**
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!)
(Lillian – August 2015 – The Discovery Museum)
**THROWBACK POST**
July 30 2011:
From Lillian y’all (she just emailed this to family as we are due for another thunder/lightning storm) . . . she cracks us up!! {I know my fellow C18 Parents get how worried this makes her!! Hahahaha}
Important Thing
Watch the clouds form:
Watch for signs of a storm coming. The clouds will begin to build into tall pillars. The sky will darken and a damp feeling will make you skin feel clammy. These are warnings to stay out of boats, get away from water and head for a safe shelter. When safely inside watch the clouds billow up and form huge dark piles of cloud. Soon you will hear the rumble of thunder in the distance, but there is no need to fear when you are safe inside.
Watch the Lightning:
Stay away from windows, but open the drapes and curtains so you can see the lightning flash and enjoy the excitement and beauty of it. The Bible calls lightning God’s arrows. There are many different kinds of lightning.
There is a heat lightning—usually associated with a summer evening storm.
There is forked lightning that splits as it nears the ground.
There is spear lightning that shoots a deadly spear almost straight toward the ground.
Lillian Darnell
Fairy Princess
July 6 2022
Got here yesterday, but I was suffering from motion sickness from the landing. Thomas and I are waiting for some lovely vegan food to be delivered. Southern vegan food. Yes! Gimme some of that! We’ll go for a river walk later. (San Antonio Riverwalk)
July 7 2022
We finally got out for a short walk.
July 7 2022
Last night and this morning. The Giggling Duo have been reunited.
July 7 2022
Lillian and I went for a walk this time.
July 8 2022
I finally got photos of this trio!!
Lillian and Macy, the original Giggling Duo.
Lauren joined the duo a few conferences back, to make it a trio. Love this trio!!
July 10 2022
More of the trio. Their friendship makes my eyes sweat with liquid love. Thanks to Amy for taking some of these.
July 10 2022
Last day of conference, and Starfish Dance.
More photos taken throughout the event …
Photos taken by Rick of Positive Exposure …
(Entire Group)
(Siblings)
(18p-)
Photos by Others …
(Parent Panel)
(Volunteer Coordinators)
(Sibling Panel)
(Sibs Night Out)
**THROWBACK POST**
August 3 2011:
Thomas: “I’m understanding some of your words Lillian. Say information.” Lillian says information. Thomas says I understood that. Thomas says, “Say boat.” Lillian says boat. Thomas says I understood that. Lillian says, “You did?” . . . Those who know us, know what I’m talkin about! LOVE it!
(Thomas and Lillian – 2011)
**THROWBACK POST**
July 20 2011:
Indy bound!!! Chromosome 18 Conference and family here we come!!!!
I’m so darn lucky! I got to have a very mini massage this morning at the airport! Team Member L got the “beep” so we got VIP treatment and I got to be touched all over!! WooooHooooo!!
TGI Fridays for some lunch before heading to Indy!!
We’ve arrived!!!! Time for the reception!!!! Yeeehaaawwww!!
View from our room!!
All kinds of adventures today for Team Member L! Getting up early, flying from Reno to Dallas to Indy, making it to our room on the 18th Floor!!!! Fun C18 Reception . . . For Mama – chatting and hugging old friends and meeting new ones face to face after chatting on Facebook. For Lillian – meeting all new friends who feel like they know her cause of all Mama’s posting on FB! Now it’s off to dream land adventures for both us. FULL day tomorrow!
July 21 2011:
Dinner before Moms night out!!!!! YeeeeeHaaaaaawwwwww!!!
Lillian’s friend Katie!!!
**************
Moms Night Out!!!! We Rock Y’all!! Just imagine how loud it is in here!!
July 24 2011:
Dinner adventures with Lillian!!
July 25 2011:
Headed to Dallas!! Done with our Indy adventures y’all!!!!
Food plus Mojito with my favorite girl!! Fries!!
Goodbye Dallas!! Thanks for the French fry and Mojito adventures!!! Here we come Reno!! Get ready!!
Lillian and I were treated to a breathtaking Reno sunset as we flew in!!!! Wow!!!
July 30 2011:
August 3 2011:
August 7 2011:
Our Chromosome 18 Conference Adventures!! Lillian and I had a ball y’all!
https://www.facebook.com/camilladowns/media_set?set=a.10150334554696584.401262.681171583&type=3
July 24 2015:
We’re off!! Team TLC’s first long distance road trip together. Wahoo!!!
We made it about an hour ago!!
Dinner with the lovely Marianna Kuortti, Shelby Stevenson and Lorie Stevenson. Thanks for the dinner company ladies!! xoxo
July 25 2015:
Happy, blessed, and grateful …. LOVE!! … And some improvising on my part since we have no plates! HA!
Handed out a few Thomas Love Cards yesterday!! YAY!! Thomas shared a hug and a kiss, I gave the lady at the hotel check in counter a hug, and a “You are Awesome!” to our server at the restaurant last night. xoxoxo
Swimming!!! xoxo
Went for a walk today … Just love exploring!!
More exploring and then dinner with the wonderful Natalie Banton, Noah Banton, and Jeff Banton. Thank you for the amazing and fun dinner company! Phone went dead before I got pictures of actual people! Thank you Jeff and Noah for having so much fun with Thomas! My meal looks like a big mess, but it was so yummy! Wild mushroom polenta. Oh my gosh! So good!!
July 27 2018:
So wonderful to meet you face to face!!! Thank you oceans for your kind words!!!
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!
Look who I ran into in the lobby!!!!! Pure happiness! For those that don’t know, this is Rick Guidotti!! He comes to our conferences every year and takes wonderful pictures of our kids and us! You can learn more at Positive Exposure … xoxoxo
July 28 2015:
I am so much enjoying our chats together, Kristina Bjorklund!!! So very happy we got to meet face to face and share hugs!! xoxo
Lillian, Natalie and Madison.
July 30 2015:
We had a surprise visitor at the farewell dance last night. Made my eyes sweat just feeling the excitement and energy that her visit brought. xoxo
“The Litmus Test” …. Brought to us by the wonderful siblings of the Chromosome 18 Registry. The Sibling Panel is one of my favorite sessions at the conference. It’s the ONE session I do NOT miss.
Pretty much all siblings agree about “The Litmus Test” as something they unofficially use with new friendships and with potential significant others.
Two siblings had brought along their significant others and what they had to say made my eyes sweat! What they shared is so beautiful …. What they had learned being at the conference, the joy of being around all of us, and thanked us for having them.
I feel “The Litmus Test” applies all across the board … potential friends of the sibs, potential friends of the parents, potential significant others for sibs and potential significant others for parents. “The Litmus Test” … Sounds like a GREAT book title to me!!
And, Ronda, what your amazing daughter shared had my eyes sweating a river. I, too, feel that part of the purpose is to help us learn that change happens within our own minds and our beautiful children facilitate this for us.
Oceans of love and gratitude to the siblings and their significant others … (Thank you Andy for facilitating the panel!)
Farewell …. Til next year!!!
More farewell smiles … Thomas just loves his little buddy, Isaac!!
Finally made it to check out the library! Whole building is glass = A hugely freaked out Lillian. The kids section was down one level. Gave her a choice to sit at the main level while Thomas and I went down or choose the stairs or glass elevator and go with us. She chose the elevator. Go Lillian!! After I got them settled with books I went to the top! That and coming back down made by head and stomach spin. HA! I’m kinda freaked out by the all glass building too. Part 1
One more swim and one more meal at Red Rock.
August 5 2015:
Spent some time yesterday making thank you messages. So fun!!
August 9 2015:
All of the photos can be seen here:
January 15 2022
Yesterday, Lillian had the first of three appointments for the neuropsychological evaluation, assessing for autism with anything else that presents. They are each about an hour and a half in length.
It was rough. Some of the assessment is timed. Lillian cannot process being out of time, when she’s not finished with a task. She had to come sit in the car with me for a 15 minute break.
Dr. Highsmith was lovely. It’s obvious she is skilled and has much experience. I’m relieved to have the 1st appointment finished. Two to go.
Lillian very much did not want to do this. But, can see the benefit. So we decided to incorporate something she DID want to do. Afterwards, we stopped at Audrey Harris park to take in the view, and take some photos.
January 18 2022
This afternoon Lillian had the second of three appointments for the neuropsychological evaluation, assessing for autism with anything else that presents. They are each about an hour and a half in length.
This time wasn’t as rough as last Friday. However, Lillian really didn’t want to go, so we were 15 minutes late. And good news! They were able to finish it with this visit. So Lillian does not have to return on Friday. 🎉🎉🎉 Go Lillian! We can do hard things!!
One last appointment next Wednesday. But, that is just for me to go over the results of the assessment (and Lillian if she wants to attend, but it’s at 9:00am and Lillian isn’t interested in an appointment at that time).
We decided to incorporate something fun again. Afterwards, we took Rosey to the car wash.
When they were very young, I didn’t have the money to put towards entertainment. I barely had enough for food. So I would make going to the car wash an adventure. Still is.
January 26 2022
I received the results of Lillian’s neuropsychological evaluation this morning. It was as expected (plus some), however, overwhelming with much parent guilt over not having done this earlier in her life. Hot tears have been flowing on and off most of the day. This also brought relief in knowing the “why” of some issues.**
I feel like I’m the middle of the rope in tug of war between helping Thomas get enrolled for dual credits for his last two years of high school, along with figuring out college, and thinking about all that needs to be addressed with Lillian. Plus addressing some of my own medical issues. We’ve got the route(s) figured out for dual credits. It’s just taking all the steps, filling out the forms, and looking into colleges to be sure the credits transfer to the 4 year degree.
I have been letting myself feel sad and sorry for myself today, as I do this all alone. Some days I’m just so damn tired. I will walk into the overwhelm, the tiredness, and let myself feel it all. I don’t believe in smooshing these kinds of feelings down, piling positivity on top of it. That does no one any good. I believe in physically feeling the shit of life.
This evaluation assessed more than autism. I’ve not shared the results as that is up to Lillian as to whether or not we share. She does have some hard core disregulation happening. These diagnoses have opened up therapies that insurance would not pay for without the diagnosis, and informed me of specific therapies and tests I did not know about. Therapies that would have been incredibly helpful earlier in life. Yet, we will start where we are.
Then, tomorrow, or the next, or the next, I’ll move back to knowing that I’m a damn cheetah, because I can do hard things. (So glad I read Glennon Doyle’s book and learned that phrase! Highly recommend her book, Untamed.)
I’m not posting for sympathy. I’m sharing because that’s part of my processing. Getting it out of my head. And I know if I’m feeling this way, someone I know has, or is, feeling this way. 🌹🌹🌹 (Photo of a damn cheetah!)
