October 19 2018:
On Saturday, Nov 10th, Lillian and I will be at the Reno Barnes & Noble for a “Where Would You Fly” book signing from 11-5. We’d love to see you there!! xoxo
Where Would You Fly at Reno Barnes & Noble
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Tag Archives: chromosome 18
Witch Creation by Lillian Darnell
**THROWBACK POST**
October 23 2013:
A little something Lillian wrote yesterday in OT … Many of you know of Lillian’s obsession with the weather. She watches the accuweather videos every night before bed and must tell me the humidity before going to bed. If she forgets she will get up and come to my room to tell me. So this had my eyes wanting to sweat … xoxo
Witch Creation – A myth by Lillian
Once upon a Halloween, a witch was born on October 31, 1899 and she had a pet named Angelic.
When she grew up, she had a witch-daughter that was born on October 30, 2013. Her name was Marcia Angel-weather. When the witch-daughter was 19, the witch learned that she had weather magic instead of Halloween magic that scares people from her clever daughter Marcia. So Ms. Angel put an alarm on her rose so she knew when to change the weather. She’s still out there changing weather and she can be seen in the clouds. They all lived happily ever after.
This story and many other stories, poems, and tales are included in Lillian’s debut book published January 2018! Go here to learn more and get your copy!
Happy Happy 17th Birthday to Lillian Darnell and Lillian and Camilla September 2018 Date Day
September 13 2018:
A powdered donut celebration to end Lillian’s last day as a 16 year old. Complete with a heart shape donut middle!
We each took turns sharing a wee bit about Lillian’s 16th year and then had a donut toast!!
One gluten free chocolate cake with coconut sugar cream cheese frosting ready for tomorrow! Yum!
Lillian says she can already feel her 17 year old self coming through! 🎉💞💞💞🎉
September 14 2018:
My Dearest Lillian,
I wish for you the happiest of birthdays.
I wish for you a joyful and peaceful 17th trip around the sun.
I wish for you all the experiences
That your heart desires.
Walks with you, I truly treasure.
Creating art with you, I truly Treasure.
Laughing and being silly with You, I truly treasure.
May strength, courage, peace and kindness be with you Always and forever ….
As will my Love.
I Love You!! Camilla
Mom
xoxo
(Message in Lillian’s birthday card)
My Dearest Lillian Darnell,
I am incredibly happy for you with how far you’ve come in your life. From those wee itty bitty 4 pounds and 5 ounces to the mighty powerful creator you have grown into …. Grown into physically, emotionally, and spiritually.
Your Knowing of what you want to experience in your life and letting that be Known are incredibly inspiring to me. You Know that you want to continue to write and create more stories and books. You Know that you want to travel and write about that also.
I am deeply sorry that I’m not able to facilitate the traveling portion of your Knowing. I know that both you and Thomas wish to travel more than our once a year trip to the annual Chromosome 18 conference. I, too, vision us traveling to the beautiful places we’ve all taken the time to list. We shall have this as our Team TLC goal. We shall get to this place eventually. I Know we will.
You have come great lengths in recognizing when your emotions have flared and I’m grateful that you tell me afterwards that something I did or said or a conversation we had caused you to get emotional. Noticing this is THE most important aspect of learning how to process emotions! What a GREAT accomplishment!!
I cannot wait to be a part of your 17th trip around the Sun. I look forward to this exciting time and am ever grateful that you and I chose one another for this grand adventure!!
Love you forever and always and throughout all times and dimensions,
Camilla
Mom
xoxo
September 14 2018:
The celebrations began this morning with The gifts and The Cake!
Happy 17th Birthday to Lillian!!
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For Lillian’s birthday this year, she asked for donations equaling $204 as she will be 204 months old (17 years), to The Chromosome 18 Registry & Research Society. She chose this nonprofit because their mission means a lot to her, and she hopes you’ll consider contributing as a way to celebrate with me. Every little bit will help me reach my goal.
(Group photo from the 2018 Chromosome 18 Conference in Baltimore, Maryland)
Lillian raised $265!! Go Lillian!!
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September 15 2018:
Yesterday was the Lillian and Camilla September 2018 Date Day and Celebrating Lillian’s 17th Birthday.
After presents and cake we visited Rancho San Rafael and the Wilbur May Arboretum!!
The sky, trees, flowers, and grounds were simply breathtaking!! I love you trees! Where do I begin and the tree end? Tree! Oh, how I love thee?
September 14 2018:
Following the park beauty it was time for fries and dessert! Vegan ginger cookie for me and lemon shortbread sandwich cookie for Lillian!
Last two stops! Shopping after dinner for a new pair of sunglasses for Lillian. And then soaking our feet in the pool and hot tub!! Ahhhhh …. That felt amazing!
Macy in the Sky with Rainbows by Lillian Darnell
July 10 2018:
Somewhere in the vast blue sky between Baltimore and Vegas; Lillian showed me something she had typed in her phone.
After I read it, a lump formed in my throat as sweat pooled in my eyes … Once I was able to speak, I suggested she expand it and create a story. I could tell it meant so very much to her and that this came straight from her heart. May this touch your heart and shine of the love of friendship and the love of nature.
With permission, here’s what she wrote: “Sometimes I hope Macy will travel on an airplane one day in the future so Macy could see how beautiful the sky is in the air. Maybe she could be able to see a circular rainbow or better yet a spectacular sunset, sunrise, or both if that day comes (I hope it does … )”
Here’s the story; which she wrote right then and there during the flight:
Hey, everyone! I wrote this story on July 5th inspired by a daydream I had for a year. The character’s name is based on Macy Miller (a close 18p- friend of mine). I hope you enjoy!
Once long ago, there lived a young girl named Macy Helens who was afraid to fly on an airplane. One day though, her parents who were named Hannah and William announced that they were going on a family vacation but they needed to take an airplane to their destination.
Hannah had made a smart decision to use this vacation to help Macy get over her fears of flying. So Macy was scared but she knew she had to overcome her fears eventually. So Macy agreed to go. They left the next morning.
First, they went through TFA (The Fairy Association which is similar to TSA) and Macy wasn’t even scared but she was proud of herself. Macy handled the searching for a gate number, waiting, and the walking quite easily. The hardest thing was getting on the plane but she told herself not to look down.
It worked perfectly. Once they were about to take off, Macy was afraid of the steep incline that what she did was look out the window for familiar sights. Macy saw circular rainbows, a beautiful sunset, and a gorgeous sunrise as well. She was very impressed. Finally, their flight landed and Macy was very happy and proud.
The 2018 Chromosome 18 Conference – Baltimore, Maryland
The 2018 Chromosome 18 Conference was enjoyed by all three Team TLC members!
We shout a huge and hearty THANK YOU to The For Kids Foundation who paid for my and Lillian’s registration fee and airfare … AND … to friends who supported Lillian’s fundraiser and purchased her book, my book, and Thomas’ book! That covered our food and a wee bit of the hotel stay!! ….. AND … The Nevada Governor’s Council on Developmental Disabilities’ Consumer Leadership fund which covered the remainder of the hotel stay!
We are deeply and incredibly grateful for everyone’s support and loving kindness in making sure that we got to the conference this year! The conference is always packed with tons of useful and informative sessions and is a once per year chance for Lillian to see her friends face to face. Friends who get her, who are like her, who laugh at her jokes, and just giggle with her for no reason! Attending the conference every summer inspires and encourages Lillian to face fears and accomplish goals … As you will read about below.
Oceans of love to all! xoxo
June 29 2018:
We made it! Almost all of us anyway. One suitcase was a flight behind us. One piece of luggage made the flight and one missed it. Hmmmm.
Beautiful Sue Rose Bentivenga met us with a smile and gave us these gorgeous flowers to brighten our room while here.
I’ve been up since 3:00 am PST. I may just pass out after we actually eat. We’ve not had a meal since our cereal at 3:30 this morning.
Yet. Yay we’re here. And. Oh my gosh. My seat mate from Vegas to Baltimore. Just wait. I’ve got to process it all. Then, I’ll share.
June 30 2018:
Thomas and I toured the USS Constellation this morning. Had to come back to the room to cool off. I was dripping more sweat than I have since moving from Mississippi! Holy heck!! I love our dry heat in Nevada!
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After coming back to the the room and cooling down, Thomas and I went to see the USCGC Taney. I’d rather be touring a forest or arboretum, yet, this brings joy to Thomas. So, two more ships tomorrow.
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One more shout out to Sue Rose Bentivenga!!! She and her daughter drove to the airport yesterday evening to pick up the piece of luggage that missed our flight. And then they delivered it to us.
And, a side note … If I had been in charge of driving us in that traffic and the style of driving here, I would have crawled under my seat and cried. We needed a Jersey native driving us through that craziness! Sue was a pro!!
Loving kindness is in the air! Thank you sweet Sue!!! Oceans of gratitude for supporting Lillian too!!! We’re so happy to hear y’all are enjoying it!!
July 1 2018:
Last tour for Thomas and I yesterday. Seven Foot Knoll Lighthouse. I’ve always dreamed of living or staying for a while in a lighthouse. The work of it sounds difficult yet the beauty is amazing. Now. That’s tiny house living!
July 1 2018:
Today with Thomas was the Lightship Chesapeake. I think I’m done stepping out into the million degree sauna. 😜😂
We toured one more after this one. So glad I did this with Thomas! Even though I almost suffocated! 🙃😜
July 1 2018:
Lillian signing books! We are super grateful!!
July 1 2018:
Today with Thomas was the USS Torsk. Last one! I think I’m done stepping out into the million degree sauna. 😜😂
This one tested the ole claustrophobia. I did good. Came close to a panic attack due to the heat, confined space, and so many people ahead of us blocking the way out! This was good for me as I was able to confront it, breathe, drink water, and know that I was okay, and not suffocating! So glad I did this with Thomas! 🙃😜
July 1 2018:
Best friends! Together again! Macy Miller and Lillian. Someone asked if they are twins! They both love to laugh and giggle!
We had dinner with The Miller’s and just look at these two lovelies! The Giggle Duo, indeed! Look how happy they are! Lillian and Macy = Happy to see one another after a year apart!
July 2 2018:
First conference for Jaclyn. She is very excited to meet other people who have an 18p- diagnosis. And! Excited to have one of Lillian’s books!! Thank you to Jaclyn and to Mike Fudala for supporting Lillian. Much gratitude!!!!
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Horrible lighting! Great and wonderful people!Love these Miller folks! Always so kind! And their Macy and my Lillian are The Giggling Duo.
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Lillian just went out to eat with a group of friends. Alone. Like. Without me. FIRST TIME she has joined the self advocates doing anything! YES!!! Hallelujah!!
She typed her order in her phone before leaving so she can show it to the host. I put money in her name badge and texted her instructions for paying her bill after explaining verbally how to pay.
She’s worried. And keeps texting me. Yet, at least she finally took that first step! The hardest one! Wahoo!!
(This post received 242 likes/loves/wows and 142 comments on facebook. Deep gratitude for everyone cheering for Lillian!)
And the below post announcing the success received 121 likes/loves and 31 comments! Thank you everyone!
July 3 2018:
Here’s another first!! Lillian has never participated in the self advocate panel!!! Listening. A first step!! Wahooo!!!!
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Thomas and his buddy Kellan at lunch today. Thomas loves chatting with Kellan.
I’ve had two different people reply to my response of “Thank You” with: “Ah, no worries. We’re family.” Loving kindness is a beautiful thing.
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I’m a wimp. This is how I spent ladies night. A nearly scalding hot soak in the tub followed by a cold water cool down; while Thomas had dinner with his friend. Then, hanging with The Giggling Duo. They think I’m funny.
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18p- Friends
July 4 2018:
Thomas and Alex on the sibling panel. There were about 20 siblings ranging in age from 10 – 35 years old.
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More friends …… After group photos.
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Dinner and Farewell Dance!! What an incredible blessing all of these people are …. to one another ….. and the World!!!!
July 4 2018:
Group photo. Clearly not everyone. Yet, a whole heck of a lot of us!!!! Lillian and I are definitely in there. Hopefully, Thomas is too!
I think the total was around 350. I’m sure The Registry will post official numbers soon. Love these wonderful people! (This is not my photo. I think it was taken by Rick of Positive Exposure or Stacey Gallardo.)
July 5 2018:
One last visit to The Inner Harbor. We didn’t even last an hour out there. Whew!!! 🔥🔥🔥
But. We got to walk down the opposite side this time. And found a wee bit of nature to photograph.
July 5 2018:
Nearly home! YaY!!!
July 6 2018:
Fear of escalators: We’ve always had to use the stairs or elevator when Lillian was with us in the past.
No longer! Lillian rode the escalator on Friday, the 29th, at the Reno-Tahoe Airport! She held tight to me and was worried. Yet, she did it! The ultimate goal is to ride the escalator without me beside her. Wahoooooo!!!!xoxo
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During the Chromosome 18 Conference there’s always an ongoing silent auction and all money stays with The Registry. I usually bid on a couple of items; yet, they quickly surpass my wee budget.
Not this time! I won this clutch bag and tote hand made in Guatemala using recycled materials. I can still feel the excitement in my chest for having won something so full of love, color, and beautiful energy!
The clutch bag can be used alone or thrown in the tote bag so to have handles. It’s just my size purse. Thank you so much Ivette Ruiz for donating this treasure to the auction and for supporting native people in Guatemala!
I also bid on a pair of boldly colored and beautiful oven mitts handmade in Kenya. We were blessed with attendees from Kenya and they donated some beautiful items. Missed out on those beauties, yet all for a good cause!!!
July 7 2018:
Another fear bites the dust. In the past Lillian has chosen to walk throughout the airport attached to my arm. Not the easiest for me while pulling a carry on bag plus her bag.
When we got to the airport in Baltimore readying to leave, I explained I needed her not to hold onto my arm and to just walk beside me.
After sighing, she said “Okay”. And did just that. Throughout the entire Baltimore, Vegas, and Reno airport!
PLUS! This included the HUGEST fear at the airport ….. The PBB. She walked through the passenger boarding bridge NOT attached to me!!! She stepped from the PBB into the airplane NOT attached to me AND walked the aisle of the airplane NOT attached to me!
Hallelujah!! Ahhhhhhh …. Freedom for both of us!!! (Picture from 2016 – Another first! First time catching air for a photo!)
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Do you have a game plan? On the four hour flight from Vegas to Baltimore I sat next to Mark Everest.
For nearly the entire flight we shared about his family – wife, daughter, son, grand daughter -, books he’s written, his company, his workshops and speaking, his hippie friend who lives above Santa Monica. And I shared about the conference, Chromosome 18, my family, Thomas and Lillian, our books, my path.
Then we talked about Stephen Covey, Zig Ziglar, Earl Nightingale, Charlie Tremendous Jones, Wayne Dyer, Deepak Chopra, and some I’m forgetting.
I just read the first 50 pages of his first book which he gifted to me. Quote from the book, “Strength does not come from physical capacity. It comes from an indomitable will.” -Mahatma Gandhi
I shared with him I am most likely the most Woo Woo person at the conference; he said, “You are needed there.” This same comment was repeated to me by someone dear to me on the last night of the conference. Messages it did my heart good to hear!
It’s a wonderful feeling to truly connect with others. I feel we bless one another and are sharing a gift with one another when we do this. Now. That’s what I call a Gameplan!! And, that’s my GamePlan!
July 8 2018:
Okay. Here’s the last one …. For this time around … Thank you to everyone for celebrating in our joy of laying to rest some fears and for having many firsts!!
While in the airports on the way back home, Lillian went into the airport restrooms without me!! We went from the first traveling experiences all those years ago of having to travel with post it notes to cover up the automatic flush sensor, to going in alone!! Yes, Yes, Yes!!!
Much gratitude to our friends and family for celebrating these seemingly small, yet HUGE, accomplishments at 16 years old for Lillian!! Wahoooo!!!
She Did It! The 2018 Chromosome Conference – Baltimore Maryland
Lillian faced many fears and had many firsts this year at conference. Each year, each conference she makes wonderful progress! Go Lillian Go!!
Not to mention a FIRST of selling and autographing her first published book!! Wahooo!!
July 2 2018:
Lillian just went out to eat with a group of friends. Alone. Like. Without me. FIRST TIME she has joined the self advocates doing anything! YES!!! Hallelujah!!
She typed her order in her phone before leaving so she can show it to the host. I put money in her name badge and texted her instructions for paying her bill after explaining verbally how to pay.
She’s worried. And keeps texting me. Yet, at least she finally took that first step! The hardest one! Wahoo!!
(This post received 242 likes/loves/wows and 142 comments on facebook. Deep gratitude for everyone cheering for Lillian!)
And the below post announcing the success received 121 likes/loves and 31 comments! Thank you everyone!
July 3 2018:
Here’s another first!! Lillian has never participated in the self advocate panel!!! Listening. A first step!! Wahooo!!!!
July 6 2018:
Fear of escalators: We’ve always had to use the stairs or elevator when Lillian was with us in the past.
No longer! Lillian rode the escalator on Friday, the 29th, at the Reno-Tahoe Airport! She held tight to me and was worried. Yet, she did it! The ultimate goal is to ride the escalator without me beside her. Wahoooooo!!!!xoxo
July 7 2018:
Another fear bites the dust. In the past Lillian has chosen to walk throughout the airport attached to my arm. Not the easiest for me while pulling a carry on bag plus her bag.
When we got to the airport in Baltimore readying to leave, I explained I needed her not to hold onto my arm and to just walk beside me.
After sighing, she said “Okay”. And did just that. Throughout the entire Baltimore, Vegas, and Reno airport!
PLUS! This included the HUGEST fear at the airport ….. The PBB. She walked through the passenger boarding bridge NOT attached to me!!! She stepped from the PBB into the airplane NOT attached to me AND walked the aisle of the airplane NOT attached to me!
Hallelujah!! Ahhhhhhh …. Freedom for both of us!!! (Picture from 2016 – Another first! First time catching air for a photo!)
July 8 2018:
Okay. Here’s the last one …. For this time around … Thank you to everyone for celebrating in our joy of laying to rest some fears and for having many firsts!!
While in the airports on the way back home, Lillian went into the airport restrooms without me!! We went from the first traveling experiences all those years ago of having to travel with post it notes to cover up the automatic flush sensor, to going in alone!! Yes, Yes, Yes!!!
Much gratitude to our friends and family for celebrating these seemingly small, yet HUGE, accomplishments at 16 years old for Lillian!! Wahoooo!!!
Camilla and Lillian Update for Chromosome 18 Conference in Baltimore and the Fundraiser
June 23 2018:
Lillian and I share that Lillian would like to have a birthday party in Baltimore so that she can actually celebrate in person with her best friends.
And we talk about Lillian selling her artwork as a fundraiser … https://lilliandarnell.com/…/fundraising-for-the-2018-chrom…/
Thanks so much everyone! xoxo
My Heroine and Flying to Baltimore
June 20 2018:
“These pages burst with Lillian’s loving attitude, kind solutions to problems, and a beautifully whimsical experience. Soak up her creative stories and poems. It will open a new window to the world.” – Kasey C., Florida
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June 22 2018:
Look what arrived yesterday! These will be flying to Baltimore with us next Friday! And she flew, and she flew, and she flew …. xoxo ….
To learn more about Lillian’s debut book, go here … Where Would You Fly …
My Adventure to Surprise Arizona by Lillian Darnell
June 16 2018:
Lillian wrote about her Surprise, Arizona adventure. Here’s part 1. You have got to read these. Hilarious!
“After a little while, I got bored so I took a lot of selfies. I also found out that their car had a GPS built into the car and a little cord you could plug up an old GPS with. Anyway, around 4:43 pm PDST we arrived at Beatty, NV. We spent the night at Death Valley Inn & RV Park which was nice … ”
The Daughter Knew She Could by Camilla Downs
June 15 2018:
The mom had nearly given up.
The daughter would not.
The daughter held strong to the
knowing that they were going.
Now. They are going.
And it’s due to her persistence.
In the next two weeks
There’s still some
distance to cover.
The daughter enlisted her creativity
and crafted magical stories
to compliment each of
her selected drawings.
For her fundraising goals
the drawings would be offered.
Have you seen the stories
or the drawings?
The daughter knew she could.
So she did.
-2018, Camilla Downs
