The Great Universe by Lillian Darnell

September 24 2017:

Working on Lillian’s debut book, “Where Would You Fly and Other Magical Stories” ….

Thought I’d share one of the stories to be included (this one hasn’t been edited yet). It’s one of my favorites!:

Where Would You Fly Updated Cover 9.2017

The Great Universe

It all started on a warm summer night in a cozy home where a girl lay sleeping until she felt a jolt and she realized she wasn’t in her home anymore. She thought, “Why is there nothing?” and she got her answer. A echoing voice said,”You are where the universe began. It’s up to you to make the planets including Earth. Once you’ve made Earth, start creating. Have fun!”

So the girl quickly discovered she could use her mind and creativity to make everything. First she designed Earth to look sparkly, clean, and rainbow colored. Second, she made other planets look like the colors of the rainbow. She went into Earth and saw she needed to make the moon and stars. So she made the moon look and taste like cheese. She made stars look like glitter.

(Want a book? Go herexoxoxo)

She made the sky look indigo when it was daytime. She exited Earth to put the blue colored sun near Earth. She went entered Earth again and realized she needed to plant some plants. Luckily, she had some seeds in her pocket. She planted them. She added orange water to Earth to help the plant. She also needed rain. So she made red rain by circling her hand. She made green clouds too.

She realized she was lonely so she added animals of different colors. She created yellow grass so she could rest. Soon the animals became bored with just the little girl. The animals spoke to the girl about being lonely. She said, “No problem. I can make humans but first, I need to set aside some land for roads, buildings, homes, shops, stores and more.”

As she spoke, she created all the other things humans needed. After that, she formed the first 2 people. She also casted a spell to make a child and make it grow. The humans were magenta. The animals were amazed at how quickly the humans formed and adapted.

She thought she was done but the voice spoke to her saying that she would have to use creativity, quick thinking, and more. So she tried casting a spell to make the years speed by but it didn’t go as planned.

She made a makeshift bed and tried to get into her cozy home. That didn’t work so she tried to get the the people and animals to help her. They saw a note on the palm tree. The girl was able to reach it. She realized it was a riddle. She realized all she had do was fall asleep.

Before she fell asleep, she cast one final spell and it was the days of the week, months, and years. She fell asleep after that. There was a surprising jolt and she woke up. She was happy to find herself back in her bedroom. She couldn’t help thinking was it all a dream. Just then, a friendly voice explained that it wasn’t a dream. It was morning.

She went to the kitchen to tell her parents the most amazing thing happened to her. Her parents explained to her she had a real vision. Years later, she grew up to become a beloved author. Her name was Morgana and she had been 11 when the amazing thing happened. She lived in Australia at the time. She loved the book Anne of Green Gables. She thought it described her life perfectly.

The End!

One Big Step for Independence and One Huge Step for Tenacity

September 15 2017:

Walked Lillian over to the lodge about 30 minutes ago. She packed her lunch, laptop, book, artwork and other items. Working on being solo in a semi-public area ….

She had a big fall on the way over and scraped her knee in a huge way! Pain is always triple for her as would be typically.

She sat in the grass and waited for me to get a napkin and wound spray and then she continued on to the lodge. She’s in pain but still over there. Next up is walking over with all her belongings without me. xoxo

She did awesome! Yet, she’s got a baseball size scrape and bruise on her knee. The fall she took was pretty rough on concrete as she was coming down a slight slope of a grassy hill …

We have indeed come a long way as in the past this would have caused her to throw up from the pain. Oceans of love and hugs to all of you! xoxo

**Update** October 3 2017: Lillian finally left the house for the first time since the fall. We went for a short walk! YAY! Her knee is still sore, yet, we’re almost there.

Happy 16th Birthday to Lillian Plus Camilla and Lillian September 2017 Date Day

September 14 2017:

Happy Happy Happy Sweet 16th Birthday Lillian!! She requested dark chocolate cake with cream cheese frosting sprinkled with dark chocolate. Cake for breakfast! Yum!

Today is the Lillian and Camilla September 2017 Date Day too. Be ready for bunches of pictures, a special blog post dedicated to Lillian, and she held a Facebook live “Birthday Party”.

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Sweet, fun, and short “Happy 16th Birthday” video for Lillian Darnell! Just a few Team TLC adventures using Google animated photos. I LOVE YOU Lillian!!

Press the “i” in the upper right hand corner for a link to Wish Lillian “Happy Birthday” …. Or make your wish in the comments here … xoxo

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After cake and presents we went for a swim, then to pick out a special cookie.

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Ended the birthday/date day with a candle light sunset car picnic with an amazing view.

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Chromosome 18 Registry Family Conference 2017 – Naperville, Illinois

July 10 2017:

Picked up a load of Biggest Little Photographer books this morning! He gets to fly to Chicago tomorrow. No luggage for you Biggest Little Photographer. You are your own luggage! xoxoxo

Biggest Little Photographer Books to 2017 Conference 7.10.17

July 11 2017:

We made it! Early morning flight. We got to see the sun rise. Now just waiting for our room. Great flight. Great ride here.

Thank you Stacey Perez for having Lovey over for a vacation at The Perez Casa. And thank you times a million for picking up Rosey from the airport. It was great to be able to drive our own car this morning!

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July 11 2017:

Spinach salad with red and green peppers, red onions, mushrooms, and roasted potatoes …. with a honey mustard dressing. Thomas and Lillian had more traditional pub items. Yet, so happy and grateful this was on the menu for me!!

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July 12 2017:

They communicate nearly daily. One lives in Reno, Nevada and one lives in Kentucky. I got the countdown all day as to when she would arrive this afternoon in Naperville.

Finally!! They get to be together face to face!! I think Macy Miller and Lillian Darnell are kinda happy.

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July 13 2017:

He waits all year to be a crazy kid with his sibling friends. Here they are off to a sibling outing. This makes my eyes pool with sweat. Love ….

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Looks kind of messy in this picture, yet it was soooooo amazing!!!! Incredibly yummy bruschetta I had for dinner last night at a local place that donated 15% from the evening to The Chromosome 18 Registry. Thank you Bricks Wood Fired Pizza!! Thomas and Lillian loved their dinner too! xoxo

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July 14 2017:

Swimming with friends for Thomas. And I got to meet Kunali! He was laser focused on where his dad went. I adore his ears. So cute! Then there was sitting on the couch and chatting and being silly with friends.

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Making “music” after lunch. (Thanks Kerry Connelly for taking this one.)

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Wee little walk around the hotel yesterday with Lillian. Beautiful flowers and a cool accidental photo. Plus, a flowers view of the hotel. Yay!! Fresh air and bits of nature. xoxoxo …

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Favorite Chromosome 18 Conference comment so far: “I don’t think I can answer anymore questions Kati.” -Matt Miller (Debra Anne Kovacs) xoxo …. Love Ms. Kati!!

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July 15 2017:

“This is why we come to the Chromosome 18 Conference!” – Wendy Waugh

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Lillian and Chris having a great conversation!

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Lillian Darnell did an amazing job interviewing with Chris of Special Books by Special Kids!!!!! You go Lillian!!!

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Happy, happy, joy, joy …. xoxo …..

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Picture of 18p- group …. xoxoxoxo

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Farewell Dinner and Dance

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July 16 2017

One more with Mr. Chris last night and a farewell photo with Mary Borucki. Wonderful people! Blessed and grateful!! xoxo

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July 16 2017:

Wish we’d had more time to explore the Naperville Riverwalk. So incredibly beautiful. Only got one hour there before we had to make our way to the airport. The music from the carillon is indescribably amazing. Would love to have toured it! And that’s one wide tree! If I had known it was so peaceful and soothing, I may have been MIA from the conference. Oh my gosh!!

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This one called for its own post …. “What We Need” ….

This spoke to me deeply. Time disappeared, all else faded. It was only these words, nature, and me. Be still. And know. xoxoxo

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July 17 2017:

Approaching the Reno Tahoe airport last night in first picture. Somewhere over Utah or Nevada in the other pictures. Nature and love are incredibly beautiful and good for us. xoxo …

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July 17 2017:

Just picked up Lovey, the guinea pig, from The Perez Resort (ran by Stacey, Eric, and Mason Perez). They are so good to her and Team TLC.

They clipped her nails and fed her all kinds of yummy fruits and veggies. She graced them with many great guinea pig sounds for all their efforts!

They picked up Rosey, Team TLC’s car, at the airport last Tuesday so I was able to drive us to the airport at 4:00 am Tuesday morning. They filled up Rosey’s tank; which hasn’t been full in quite a while!! They delivered Rosey back to us at the arrival pick up area last night at Reno-Tahoe airport!!

Thank you Stacey, Eric, and Mason! Y’all are the best and we are so incredibly blessed and grateful for your kindness and love!!! xoxoxoxoxo

July 18 2017:

Most “WOW” conference moment … We traveled nearly 2,000 miles from Reno to Naperville and met a mom and daughter (with trisomy 18p) from Grass Valley, California … about an hour and a half from here. It was their 1st conference! Can’t wait to visit them in Grass Valley! Virginia was born in 1961 and was diagnosed in 2012. xoxo

Best follow up comment to a session at the Chromosome 18 conference:

“The people who created the formulas and rules were drunk.”

Comment courtesy of Thomas after he and I had a discussion about John McGing’s SSI/SSDI/Medicaid/Medicare session. It’s enough to drive one to drinking … Cheers! …. xoxo

July 19 2017:

Fifteen Biggest Little Photographer books travelled by backpack to Naperville with us. Only three came back.

Oceans and oceans of gratitude to everyone for their support, and to Thomas and Biggest Little Photographer for being the Way for Team TLC to eat while we were there!

YAY for food! YAY for inspiring creations! xoxo

Help Us Choose the Cover for Lillian Darnell’s Debut Book

July 3 2017

Help us choose!! Which one for the cover of Lillian’s debut book? React to whichever is your choice and if you have time, please let us know the “why” for your choice.

“Where Would You Fly
and Other Magickal Stories”

This book is a collection of tales, stories, and poems Lillian Darnell has written over the years about fairies, princesses, food, and much more.

Where Would You Fly Fairy Wings Book Cover 6.28.17 Where Would You Fly Book Cover 6.28.17

Help Team TLC With Attending the 2017 Chromosome 18 Family Conference

C18 Trip July 2016 #17

We need your help! Last minute fund raising for Team TLC’s attendance at the 2017 Chromosome 18 Family Conference in Naperville, Illinois from July 12th – July 15th.

Fortunately, we have a sponsor who has loaned us money for our airfare, registration, and hotel stay. And we have a wee bit from Thomas and Lillian fundraising since last year’s conference.

We just need to make sure we have enough for incidentals while there … food, transportation to and from the airport, and the special events lined up for siblings and self advocates.

If you are moved to help, here’s a list of our creations and items for sale:

  1. Lillian’s debut book, Where Would You Fly and Other Magickal Stories, debuting by October 2017. Pre-order here … http://lilliandarnell.com/author/
  2. Thomas’ book, Biggest Little Photographer, published in October 2016. Order here …. http://BiggestLittlePhotographer.com
  3. Camilla’s book, D iz for Different – One Woman’s Journey to Acceptance, published in March 2012. Order here …. http://camilladowns.com/books/
  4. Skeleton key wind chime designed by Thomas and created by Camilla ($25 – includes shipping) … **SOLD** Picture here … https://www.facebook.com/photo.php?fbid=10155549637116584&set=a.52927246583.79053.681171583&type=3&theater
  5. Print or digital download of Lillian’s Egyptian Eye or Rainbow of Emotions abstract art …. View and order here … http://lilliandarnell.com/lillians-art/
  6. Hand made notebook by Lillian … Order here … http://lilliandarnell.com/lillians-art/
  7. Custom poem for you or a loved one (by Camilla) … email Camilla at Camilla Downs @ gmail . com ….
  8. Queen size solid wood sleigh bed frame … Make an offer … Picture here … https://www.facebook.com/photo.php?fbid=10155404014936584&set=pb.681171583.-2207520000.1499540619.&type=3&theater
  9. If you are a business owner and want to sponsor us, I’m happy to wear promotional items, get a temporary tattoo, write a blog post, etc. …. email Camilla at Camilla Downs @ gmail . com …
  10. Just want to donate …. Go here … https://www.paypal.me/camilladowns
  11. Prayers, blessings, and good juju!!

If you’re wondering why this is such a big deal for Team TLC and why it means so much for us to be there, go here and here.

With tremendous gratitude and blessings,
Thomas, Lillian, and Camilla
xoxoxo

C18 Trip July 2016 #77
(Team TLC with our friends from Australia!! xoxoxo)

She Loved by Camilla Downs

May 18 2017:

It’s the 18th of the month. Chromosome #18 brought into our life family we never knew we had and has blessed us beyond the words to even describe. To a beautiful soul ….

Dragon and Angel Wings and Bird Wings Vintage Lake May 2017

Ever There

She loved.
She shined.
She let go.

Ever there with kind words,
with encouraging words,
with loving suggestions,
and, oh yes, hugs and happy dancing.

A smile that beamed brightly.
Greeting with open arms all who
were new to this different path.

The originator
of the “Different is Good” slogan.
She checked in on one
just when one thought she
was all alone.

She lived life
to the fullest,
coming to embrace this
different path.

Deeply she loved
her family.
Openly and freely
sharing her own
ups and downs.

Dear friends
and family the world over, has she,
who are deeply saddened for her
early departure.

She wanted to help all.
She wanted to cheer us all on.
She wanted to hug us all.

Every eighteenth of every month
my face to the sky I will turn,
to see and feel a warmth from above,
surrounding me with the
help, cheer, and hugs she
longed to provide.

Fly free beautiful soul,
Fly free and help, cheer,
support, hug, happy dance,
and LOVE for an eternity.

I love you, Susan Moran.

Camilla & Susan Savanahh Conference

Hand Made Custom Notebooks by Lillian Darnell

May 20 2017:

From Lillian …. (The conference is in Naperville, Illinois this year) …. xoxo

Hey, everyone! Every year around this time, I like to create something to fundraise and help my family attend the annual Chromosome 18 Family conference.

This year I am creating handmade notebooks which can be customized.

Here’s a sample. Let me know if you want one by commenting here or sending an email to my Mom at CamillaDowns @ gmail . com .

Lillian's Doodling Notebook May 2017

She’s already received THREE orders! YAY Lillian!

Celebration of an Ending

April 26 2017:

Done! After six years. Lillian began in 2011 with all three therapies: ST, PT, and OT. ST and OT have long been stopped. Today was the last physical therapy appointment. xoxo

Lillian Done with PT 4.26.17

Chocolate covered gluten free donuts yesterday in celebration of endings, one more layer of freedom, and feeling the storms of life to allow even more freedom. Cheers! 🎉 xoxo

Celebratory Donuts Done with PT for Lilllian 4.26.17

How Camilla Feels About It

**THROWBACK POST**

February 28 2013:

One of our sweet Chromosome 18 friends is doing a research project on Chromosome 18 affected individuals and their family for school and asked us to participate. Here’s my contribution … being interviewed regarding how it feels to be a parent to Lillian (who has 18p-)! Go Courtney MacMasters Go! Courtney is sibling to one of our C18 affected friends!