Throwback Post: Important Thing by Lillian Darnell

**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

The 2022 Chromosome 18 Family Conference – San Antonio

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: The 2015 Chromosome 18 Conference

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:

https://www.facebook.com/camilladowns/media_set?set=a.10153588481731584.1073741881.681171583&amp%3Btype=3

Neuropsychological Evaluation With a Determined Cheetah

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!)

Throwback Post: 2012 Chromosome 18 Conference – San Antonio

**THROWBACK POST**

A more in depth post can be found here …

Journey to Magical Moments – The 19th Annual Chromosome 18 Conference

 

 

July 28 2012:

We braved a long walk down The Riverwalk to get some food…

Halfway there y’all!! Having some lunch while we’re waiting.

We made it!!!! Wahoo!!! Awesome view from our room. Time for some food!!!

Look close … Team Member T is with us!!

WOW!!!! This salsa is hot!!! Yum!!!!

Team TLC takes movie night with us wherever we go … Charlotte’s Web in San Antonio!!! We miss you Mr. T …

July 30 2012:
Another Thomas and Susan sighting!!!
**********
Ladies night …. River boat ride with margaritas … Happy Birthday Catherine!!!
Look!!! It’s Susan again!!! Wow! She’s making her way around this conference!! Now she’s hanging with Lorie!!
More ladies night festivities … I LOVE these people!!!
August 2 2012:
Had to have some ribs before we left …. Oh my goodness!!! YUM!!!
One last time in the pool before we say adios to San Antonio!!
Almost ready to board …. Just finished off the rest of our ribs .. I wasn’t leaving those behind!!
Made it home … Wonder if our luggage made it?? Yay for being home!!!
August 3 2012:
August 11 2012:

News: Camilla as the Volunteer 18p- Coordinator

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 …

Latest News: New Role as 18p- Volunteer Coordinator

Throwback Post: The Island Princess and the Prince by Lillian Darnell

**THROWBACK POST**

August 29 2013:

Found these two angels sitting next to the computer as I was turning the lights out for bed. Asked Lillian if she put them there and she told me yes and that they were giving her ideas! Turns out they indeed were …. (I think I may have some angel bears sitting next to my computer tomorrow!)

The Island Princess and the Prince
Based on stuffed bears
By Lillian

Long ago, there was a queen named Lila and had been wishing for a baby for 4 years now and she got her wish. She was so happy that she named the baby “Princess Lila 2”. But she had lost her daughter and she was very sad…

10 years later….

Lila had thought her name was Lil and she was surprised to see that she could talk to animals.Then one day a stranger named Frank who is actually King of where she used to live. He wanted her to come but her animal friends wanted her to stay. Then she remembered her name was Lila for short because her real name was Liliana. Then she met her mother then after they had reunited and then Frank and Lila got married and lived happily ever after.

The 2021 Chromosome 18 Closer Than Ever Family Conference

July 11 2021

The yearly conference has kicked off! Sad that we’re not in person again this year. Fingers crossed for next year! Thank you to those who have worked hard organizing this event.

July 12 2021

2021 Chromosome 18 Conference today and tomorrow. You would think with Lillian being 19, the conference material would not be useful for us any longer. Nope. I’m getting very useful information, and asking lots of questions. Incredibly helpful. Thank you C18 Registry & Research Society.

July 13 2021

We had such a wonderful session this morning for parents/caregivers of self-advocates with 18p-. We missed you Katharine Newman .. So sorry you were having technical difficulties. This is such a beautiful group of humans. So blessed to be a part of it.

During our session, the parent presentation to classrooms came up. So I thought it a good time to repost this for anyone who is not attending conference, or for friends who may be dealing with something other than a chromosome 18 difference.

Here’s one of the last presentations I gave on Lillian’s behalf –

(September 2014) – Lillian’s birthday and the dawn of a new school year are upon us. This was the sixth annual “Lillian” presentation to her classmates. It began in the first grade because her classmates kept asking me “why” questions about Lillian. I figured why have them wondering and drawing erroneous conclusions and choosing to judge her when I can try and help them understand.

The presentation went GREAT! I got lots of questions and one sweet young man bought a copy of my book, D iz for Different, for his aunt. He has a cousin with 22q-. So sweet!

I like to share my presentation publicly because so many other parents are curious about this and some want to take the plunge and do their own presentation. Please use it as you need. I only ask that you let people know where you got the idea or information.

These are my raw notes for the presentation. I add to or skip information as I feel needed.

Lillian and Being Different

“If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured or far away.” – Henry David Thoreau

(Slide 1) Chocolate Candy Recipe ~ Each chocolate has a recipe – all use cocoa, and dark or milk chocolate
What ingredients make chocolates so different?

Fruit – Cherries, Coconut
Nuts – Almonds, Cashews, Peanut, Hazlenuts
Flavorings – Vanilla, Orange, Strawberry

We are like chocolates – we each have our own special recipe with special ingredients that make us DIFFERENT, UNIQUE, BEAUTIFUL AND AMAZING.

Chocolate recipes are usually in a book or written on paper or even in someones head. Our recipes for our bodies are in our genes.

Genes are our recipe for our bodies and they decide:

(Show book … “You’re Full of Genes” by Claudia Zylberberg Ph.D.)
Brown or Blue Eyes
Short or Tall
Straight or Curly Hair
Need Glasses or Not
Have Freckles or Dimples
Have small feet or big feet

Genes decide EVERYTHING about you and your body and how the parts should work. If some genes are missing or duplicated this decides whether something with our body doesn’t work.

Another way to explain is that genes are all of the instructions the human body needs to function. All of our bodies genes are organized into structures called chromosomes.

(Slide 2) Let’s look at this like a Chocolate Candy Cookbook. If the recipes are genes, then each chapter (Chocolate with Nuts Chapter, Chocolate with Fruit Chapter) is like a chromosome. The chapters, or chromosomes, make up the book – in our case, the book of life.

(Slide 3) Chromosome, DNA, Gene Slide

(Slide 4) There are 22 numbered pairs of chromosomes, plus two sex chromosomes (male or female). Each chromosome is numbered and each chromosome has a waistband. The waistband separates the short arm (p) and long arm (q) of the chromosome. (slide 4)

(slide 5) Lillian has a very unique recipe (genes) unlike any of you. A section of her recipe is missing – deleted (called a chromosome abnormality). A piece of her #18 chromosome is missing – the short arm of her #18 is deleted, so it’s called 18p-.

What happens if you leave out an ingredient for a recipe?

(slide 6) Lillian has to work harder at doing many of the things that are easy for you. She’s had to do this since being a baby. Things like turning over, holding her head up, crawling, walking, making sounds, cutting with scissors, eating, writing, talking.

Lillian’s mouth has to work so much harder to chew and swallow and speak.

Her hands have to work harder to do things like writing, cutting, make crafts, opening packages.
Her body has to work harder at walking, running, and staying balanced.

She’s very nervous, startled and scared about loud sudden noises (thunderstorms, fire alarms for drills, helicopters)

Lillian uses an iPod Touch with an application installed that allows her to type in what she needs or wants to say and press a speak button. Talk about Proloquo2Go. She can also simply type what she wants to say in the notes section or texting section of the iPod. She doesn’t really use P2G as much as she did when she was younger.

Lillian has all the words and things she needs and wants to say in her mind. She has problems articulating it (saying it) clearly.

She is just the same as the rest of you in many ways. She likes to read (mysteries, non-fiction books and friendship books), loves listening to a variety of music, she likes french fries, hot dogs, meatloaf, donuts, and she loves going for walks, taking pictures, and telling and listening to jokes.

Lillian loves the stars, moon and sun (astronomy) and loves dancing and just being silly. She’s passionate about the weather. She tracks the weather every day!

I want to share some ideas and thoughts with you on how you can be awesome, supportive, and helpful friends and classmates to one another and to Lillian! I want to make sure you understand I’m not solely talking about Lillian with how to be supportive. This is for all of you.

Encourage one another if you see any of your classmates or Lillian having a hard time.
Lend a helping hand if you see one of your classmates struggling.

Be patient with Lillian if you don’t understand what she has just said ~ encourage her to use her iTouch to tell you what she’s trying to say or write it down or verbally spell the word for you.

Be patient with one another too.

Take that first step and ask Lillian what she did over the weekend or about her likes, dislikes ~ questions you would ask your fellow classmates and friends. You will have to wait longer for an answer; but the good feelings you get from showing kindness and friendship to someone who is a little different will outweigh the amount of time it takes Lillian to respond.

This goes for any of your classmates. If you see a classmate all alone, take that first step. Go over and start a conversation with him or her. Also remember to respect if that person chooses to be left alone. Some times we just need alone time.

(Slide 7 & 😎 Team TLC and Different iz Good

Now, let’s switch gears a bit and talk about being different. It’s okay to be different. It’s okay to be YOU. We all, at some point, feel like we don’t fit in and feel like we are different. That’s because we are. We are uniquely us, we are just as we were meant to be.

Most times we chase after trying to fit in. Fit in with the cool kids, the loud kids, the fun kids, the popular kids, the crazy kids. You may not understand this now, but chasing after trying to fit in comes back to haunt us later in life. It becomes a habit and then we chase after friendships, relationships, careers. The easiest and most fun route to take in life is to just be YOU and be grateful for whatever it is that makes you YOU!

Before we can accept and be kind to others and to those with differences, we must first … Follow the link to read the full presentation and letter to the parents of classmates …

Latest News: Sixth Annual Lillian Presentation

2021 Chromosome 18 Conference – Thank you to the siblings who participated in the Sibling Panel. Beautiful, and honest, as always. I took this picture before everyone was connected. 💜💜💜 GREAT job Thomas!! xoxo

Whew! All done with the 2021 Chromosome 18 Conference, ending with the always fun Starfish Dance. I’m pooped. That was two full days! ❤️❤️❤️ Love you C18 family. ❤️❤️❤️

Stella’s Beloved Garden by Lillian Darnell

April 8 2021

New story from Lillian (plus a poem!!)

Once there was a girl named Novella who was often called by her nickname Stella. Stella often loved the garden in the mansion where she would do everything and so all was well or at least so she thought.

Until one day, there was a huge fire that blew across the land. Stella was very sad to leave her beloved garden behind but she knew that her garden would always be in her heart.
So Stella and her family left to ….

Stella’s Beloved Garden

New Story from Lillian Darnell – Once in a Faraway Land

February 9 2021

A beautiful new story from Lillian Darnell … xoxo

Once in a faraway land lived two girls who were best friends. They did everything together including swimming and reading together. Their names were Anna and Hazel. They knew they would be best friends for life but little did Anna and Hazel know …

Anna and Hazel’s Love Story