Twirling Fairy Princess


October 17 2013:

When I stepped outside last night to take in our beautiful sunset … I caught a glimpse of the fairy princess that visits us. Laid flat on the ground and took some pictures of her twirling in the sunset sky show before she disappeared. Perhaps she’ll have her wings showing next time!

Lillian Twirling in Sunset 10.17.13 #1 Lillian Twirling in Sunset 10.17.13 #2 Lillian Twirling in Sunset 10.17.13 #3 Lillian Twirling in Sunset 10.17.13 #4 Lillian Twirling in Sunset 10.17.13 #5 Lillian Twirling in Sunset 10.17.13 #6

Amazing and Inspiring and First Blurb and Editing is Finished

October 21 2017:

Do you know how amazing and inspiring it is to be reading imaginative, creative, fictional accounts of your young daughter’s life, written by her?

Lessons she’s learned and emotions she has experienced with the wisdom words you have shared woven throughout? WOW and just, WOW! xoxo

October 22 2017:

We received our first “Yes” for a blurb for the back cover! YAY!!

And ….. The editing is finished!!

Where Would You Fly Updated Cover 9.2017 #2


The Ideas Are Inside of Us for a Reason – Where Would You Fly


October 15 2015:

This sweet little delicate hand. She found this leaf yesterday on our walk around the lake. She brought it all the way home, then released it in the wind. She asked me to take a picture of it. Due to sensory issues I don’t get to hold that sweet little hand in mine, don’t get to snuggle up close to her, and don’t get to smother her with kisses. I’m taking this sweet little hand in mine (in my imagination) and we are about to begin a fun adventure. She and I are going to put our imaginations and hearts together and write our first children’s book. Let’s see what we come up with. The ideas must be inside of us for a reason. Time to release them just like that beautiful leaf. xoxo

**Update** November 5 2017: Want to help? “Where Would You Fly and Other Magical Stories” is in the final stages of editing. Then our angel helper will be adding Lillian’s artwork and transforming into a book format.

It would be an incredible blessing for Team TLC to pre-sell 10-50 copies of the book. It should arrive by end of November 2017 at the latest. Plus you will receive a special gift for pre-purchasing. xoxo

Lillian Holding Fall Leave 10.15.15

Rainbow Love by Lillian Darnell

Rainbow of Emotions by Lillian Abstract Art 2015
Lillian’s artwork titled “Rainbow of Emotions”

Ever wonder why we sometimes see double rainbows? … from the book, “Where Would You Fly”, by Lillian Darnell … I’m having fun editing. xoxo

Rainbow Love

This story is about rainbows and love. I hope you enjoy!

Once there lived two rainbows who didn’t want to separate for the love of nature. Their names were Candy Rainbow and Princess Rainbow. One day, Candy Rainbow was accidentally separated from Princess. What they didn’t know was the Nature fairy had split them in half.

Candy desperately looked for Princess but there was no sign of her. Meanwhile, Princess was where Candy wasn’t. She was anxious to find him but the Nature fairy wouldn’t let her. Candy got up to ask the Nature Fairy. What the fairy said, “No, I haven’t seen her. I didn’t separate you.”

Candy thought the fairy was being suspicious. Princess started suspecting the fairy. After a year past, they accidentally ran into each other. When the fairy found out, she was furious.

The fairy decided to put Princess invisible so she couldn’t be seen when they bumped into each other. Candy tried to explain to the Nature fairy that rainbow magic was more powerful than fairy magic. Since the nature fairy wouldn’t listen, Candy decided to show her what he tried to explain.

His plan was to use his magic and power to get Princess out of the invisible world. So when Princess saw he was stretching out to use his power, she decided to reach over and touch his stretched arc. Candy felt lighter somehow but he didn’t know how.

Suddenly the invisible spell broke. The fairy was shocked at what happened but the fairy had to vanish. “It was me who helped you, Candy”, said Princess softly. “Thank you, Princess!” and the rainbows’ love was returned.

Princess thought if people saw them, it would be easier to have one rainbow be invisible. Princess decided to go invisible but Candy was able to see her. Every once in awhile, Princess appeared behind Candy. That is why some people see double or triple rainbows.

(written when Lillian was 14 years old)

Would you like to help us in our goal of pre-selling 50 books? Go here …



Putting Your Shirt On and Taking Your Shirt Off


October 13 2014:

Putting your shirt on, taking your shirt off, putting it on, taking it off. Simple thing really. Yet, Lillian had not been able to do it without help ….. UNTIL last week!! YAY Lillian!! Lillian can now take off a shirt and put on a shirt ALL BY HERSELF!!!! After 13 years, I am relieved of this parental privilege! Wahoooo!! You go Lillian!! xoxo


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 …

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 …
  2. Thomas’ book, Biggest Little Photographer, published in October 2016. Order here ….
  3. Camilla’s book, D iz for Different – One Woman’s Journey to Acceptance, published in March 2012. Order here ….
  4. Skeleton key wind chime designed by Thomas and created by Camilla ($25 – includes shipping) … **SOLD** Picture here …
  5. Print or digital download of Lillian’s Egyptian Eye or Rainbow of Emotions abstract art …. View and order here …
  6. Hand made notebook by Lillian … Order here …
  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 …
  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 …
  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

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

I’m the Queen of the Mountain


February 22 2014:

“I’m the queen of the mountain!” – Lillian Darnell

Celebration time! This young lady remembered all on her own today that she needed to get a book for school from the library. I did not remind her at. All! We did not even discuss it today or yesterday.

Also in the past week, she has been doing basic addition and subtraction in her mind!! This girl! This girl who stood on this little hill today and without any prompting from me said, “I’m the queen of the mountain!”

Celebrate those milestones whenever they come …. however long it takes! ♡

Lillian on Hill 2.22.14

How It Feels to Be A Sibling to Lillian


February 19 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 Thomas‘ contribution … being interviewed regarding how it feels to be a sibling to Lillian! Go Courtney MacMasters Go! Courtney is sibling to one of our C18 affected friends!