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!

Last Craniosacral Session for Lillian and Library Volunteering

September 11 2017:

Lillian’s last craniosacral session since Anthem Blue Cross has decided these sessions are not helping her so they will no longer pay. We so much appreciate Christine! Lillian has been seeing her for 3 years now.

Aren’t we blessed that people who know nothing about chromosome deletions and nothing about the intricacies of pain levels that are sometimes better and sometimes worse are so knowledgable about what’s best for us?

We have not given up. We’ll try starting sessions again in 2018 after she’s had three months without them. Beautiful hibiscus to send us off ….xoxoxo

Lillian Last Cranio Appointment 9.11.17 #1 Lillian Last Cranio Appointment 9.11.17 #2 Lillian Last Cranio Appointment 9.11.17 #3

September 13 2017:

Second time volunteering at the library …. and Lillian’s last day as a fifteen year old! This time we pulled holds for two hours. Found all but three of them. Good job us!!

Camilla and Lillian Volunteering at Library Day #2 9.13.17 #1  Camilla and Lillian Volunteering at Library Day #2 9.13.17 #3

Camilla and Lillian Volunteering at Library Day #2 9.13.17 #2

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”.

Lillian 16th Birthday and September Date Day 9.14.17 #1 Lillian 16th Birthday and September Date Day 9.14.17 #2 Lillian 16th Birthday and September Date Day 9.14.17 #3 Lillian 16th Birthday and September Date Day 9.14.17 #4 Lillian 16th Birthday and September Date Day 9.14.17 #5

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

Lillian 16th Birthday and September 2017 Date Day 9.14.17 #6 Lillian 16th Birthday and September 2017 Date Day 9.14.17 #7 Lillian 16th Birthday and September 2017 Date Day 9.14.17 #8 Lillian 16th Birthday and September 2017 Date Day 9.14.17 #9 Lillian 16th Birthday and September 2017 Date Day 9.14.17 #10Lillian 16th Birthday and September Date Day 9.14.17 #11Lillian 16th Birthday and September Date Day 9.14.17 #12Lillian 16th Birthday and September Date Day 9.14.17 #13Lillian 16th Birthday and September Date Day 9.14.17 #14

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

Lillian's 16th Birthday and September Date Day 9.14.17 #15 Lillian's 16th Birthday and September Date Day 9.14.17 #16 Lillian's 16th Birthday and September Date Day 9.14.17 #17 Lillian's 16th Birthday and September Date Day 9.14.17 #18 Lillian's 16th Birthday and September Date Day 9.14.17 #19

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

Lillian 16th Birthday and September Date Day 9.14.17 #20 Lillian 16th Birthday and September Date Day 9.14.17 #21 Lillian 16th Birthday and September Date Day 9.14.17 #22 Lillian 16th Birthday and September Date Day 9.14.17 #23 Lillian 16th Birthday and September Date Day 9.14.17 #24

 

I Choose Happiness …. That is What I Choose

August 10 2017:

Incredibly grateful for this young man I get to have as my son. Not because our relationship is all roses and rainbows. It’s anything but that. Yet, definitely some roses and rainbows blooming too!

At dinner Lillian choked badly on a piece of pear. She’s choked on food many times, yet always gets it out pretty quick by coughing. She has poor oral motor skills and doesn’t chew food thoroughly.

She could not get it out last night and I panicked. Watching your daughter struggle for a breath and begin to turn purple is a dreadful and draining experience. Completely forgot what I know about assisting a person choking on food. After what seemed like forever, we finally got it out.

Then I had a huge meltdown being upset about that and getting caught up in my own melodrama. Thomas said exactly the things I didn’t want to hear and exactly what I would have said to either of them in that situation.

I cannot even express in words how blessed and grateful I am that we three are traveling this life’s journey together. Thank you Thomas for helping me to learn not to cling and to let “things” move on through me rather than hanging on for dear life …. I choose Happiness. That’s what I choose … xoxoxoxo

Round and Round With Ridiculousness – Health Insurance Companies

August 3 2017:

“Those people at the insurance company are a fool’s behind.” -Lillian Darnell (I have no idea what a fool’s behind is, but in this case I’m guessing it’s not a good thing.)

Lillian’s craniosacral therapist left a message today that we need to cancel Lillian’s Monday appointment as Anthem Blue Cross has decided they will not pay for more sessions.

She’s ONLY been going for about 2 years now and looks forward to each monthly session for the relief it provides. It’s for pain management and they have been paying all this time (with disabled medicaid as back up).

Her amazing therapist only called as a courtesy so that we don’t incur a bill and to give her office time to dispute with Anthem. So grateful for her and the staff at the Northern Nevada Medical office.

As a side note, I had a lengthy conversation with a chromosome 18 dad at the conference who works for Blue Cross Blue Shield. I did not know there is a difference between Anthem and the Blue Cross for which he works. Anthem is for profit and Blue Cross Blue Shield is non-profit.

He wanted to help me so badly with an issue I gave up on with Anthem. Due to a mistake they overcharged me by $50 about 2 years ago. I tried for about a year to get the money back and eventually gave up. I have no patience in talking with the people who answer the phone.

They also have a flaw in their online system as I cannot register Lillian for an online account to pay her bill or find out which dentists take her insurance. One must be 18 years of age. Well, she’s not, but she has her own policy in her own name (grandfathered in since she already had the policy). No one seems to care about this glitch.

I am so thankful that we hardly ever go to the doctor and my heart aches for my C18 friends who go round and round on a consistent basis with insurance companies. Life is too fleeting and we should not have to worry and fuss with this … Sending so much love to all who have to go round and round for ridiculousness … xoxoxoxo

**Update** August 26, 2017:

Lillian’s craniosacral therapist had a peer review with someone from Anthem. It happened so fast I didn’t have time to get supportive documentation to her. She went round and round with them and they would only give her one more appointment with us. They said that Lillian is not getting better so these visits aren’t doing her any good ….

Next step is checking with the Research Center to see if there have been any research studies done regarding chronic pain and 18p- … Round and Round …

You Should Get These

Today was Team TLC library day. These look like exciting, juicy, intriguing books. Don’t they?

Thomas said, “You should get these.” I replied that reading them may make me crazier than I already am plus drive me to drinking.

So, Thomas checked them out so he could read them and advice me in matters relating to Lillian. Thank you Thomas!! xoxo

Social Security Books August 2017

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!

2017 Chromosome 18 Conference 7.10.17 #2 2017 Chromosome 18 Conference 7.10.17 #3 2017 Chromosome 18 Conference 7.10.17 #4 2017 Chromosome 18 Conference 7.10.17 #5

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!!

2017 Chromosome 18 Conference 7.10.17 #6 2017 Chromosome 18 Conference 7.10.17 #7

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.

2017 Chromosome 18 Conference 7.12.17 #8

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 ….

2017 Chromosome 18 Conference 7.13.17 #9

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

2017 Chromosome 18 Conference 7.13.17 #10

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.

2017 Chromosome 18 Conference 7.14.17 #11 2017 Chromosome 18 Conference 7.14.17 #12 2017 Chromosome 18 Conference 7.14.17 #13

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

2017 Chromosome 18 Conference 7.14.17 #14

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 …

2017 Chromosome 18 Conference 7.14.17 #15 2017 Chromosome 18 Conference 7.14.17 #16 2017 Chromosome 18 Conference 7.14.17 #17 2017 Chromosome 18 Conference 7.14.17 #18 2017 Chromosome 18 Conference 7.14.17 #19 2017 Chromosome 18 Conference 7.14.17 #20 2017 Chromosome 18 Conference 7.14.17 #21

****************************

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!!

****************************

2017 Chromosome 18 Conference 7.14.17 #222017 Chromosome 18 Conference 7.15.17 #36

July 15 2017:

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

2017 Chromosome 18 Conference 7.15.17 #23

2017 Chromosome 18 Conference 7.15.17 #24

Lillian and Chris having a great conversation!

2017 Chromosome 18 Conference 7.15.17 #25

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

2017 Chromosome 18 Conference 7.15.17 #26

Happy, happy, joy, joy …. xoxo …..

2017 Chromosome 18 Conference 7.15.17 #27 2017 Chromosome 18 Conference 7.15.17 #28

Picture of 18p- group …. xoxoxoxo

2017 Chromosome 18 Conference 7.15.17 #31 2017 Chromosome 18 Conference 7.15.17 #32

Farewell Dinner and Dance

2017 Chromosome 18 Conference 7.15.17 #33 2017 Chromosome 18 Conference 7.15.17 #34 2017 Chromosome 18 Conference 7.15.17 #35

2017 Chromosome 18 Conference 7.15.17 #29 2017 Chromosome 18 Conference 7.15.17 #30

July 16 2017

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

2017 Chromosome 18 Conference 7.15.17 #37 2017 Chromosome 18 Conference 7.15.17 #38 2017 Chromosome 18 Conference 7.15.17 #39

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!!

2017 Chromosome 18 Conference 7.16.17 #44 2017 Chromosome 18 Conference 7.16.17 #43 2017 Chromosome 18 Conference 7.16.17 #42 2017 Chromosome 18 Conference 7.16.17 #41 2017 Chromosome 18 Conference 7.16.17 #402017 Chromosome 18 Conference 7.16.17 #452017 Chromosome 18 Conference 7.16.17 #462017 Chromosome 18 Conference 7.16.17 #472017 Chromosome 18 Conference 7.16.17 #482017 Chromosome 18 Conference 7.16.17 #492017 Chromosome 18 Conference 7.16.17 #502017 Chromosome 18 Conference 7.16.17 #512017 Chromosome 18 Conference 7.16.17 #522017 Chromosome 18 Conference 7.16.17 #532017 Chromosome 18 Conference 7.16.17 #542017 Chromosome 18 Conference 7.16.17 #552017 Chromosome 18 Conference 7.16.17 #562017 Chromosome 18 Conference 7.16.17 #572017 Chromosome 18 Conference 7.16.17 #582017 Chromosome 18 Conference 7.16.17 #592017 Chromosome 18 Conference 7.16.17 #602017 Chromosome 18 Conference 7.16.17 #612017 Chromosome 18 Conference 7.16.17 #622017 Chromosome 18 Conference 7.16.17 #63

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

2017 Chromosome 18 Conference 7.16.17 #68

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 …

2017 Chromosome 18 Conference 7.16.17 #64 2017 Chromosome 18 Conference 7.16.17 #65 2017 Chromosome 18 Conference 7.16.17 #66 2017 Chromosome 18 Conference 7.16.17 #67

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)