The Family We Never Knew We Needed – The Chromosome 18 Registry

December 24 2023

I always love the Chromosome 18 card. Check out the quote on the back of this year’s card. ❤️💚❤️

“The journey from Lillian being diagnosed at 3-years-old to where we are now at 22-years-old would have been immeasurably more difficult and lonely if not for The Chromosome 18 Registry & Research Society. The Registry has blessed our entire family with critical information, research updates, hope, fun, friendships, and the family we never knew we needed.”

Latest News: New Role as 18p- Volunteer Coordinator

I have news to share! I’ve taken on a volunteer position with Chromosome 18 Registry & Research Society. Here’s the biography I put together for the C18 website (which can be found here – https://www.chromosome18.org/chromosome18-team/camilla-downs/).


(Team TLC – September 2020)

I’m looking forward to my role as 18p- coordinator. My name is Camilla Downs (pronounced like Pamela, but with a “C”), and I’m 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 to begin work on her phobias. All of these issues are still with her.

I divorced in 2007, moving to Reno, Nevada from Tacoma, Washington. (Hey single parents out there. I see YOU!!) We’ve attended the yearly Chromosome 18 Conference since 2009, when it was in Las Vegas. It was so close, within driving distance, I just had to go check it out (Vegas is an 8 hour drive south of Reno). I was hooked, and we haven’t missed a conference since then.

The Registry has been deeply meaningful to us, by way of education, resources, research, and friendships with others who help us to know we are not alone. Thomas participates in the sibling track, and sibling events in between conferences. He also attends our local Sibshops events, and is in training to become a Sibshop Leader. Lillian’s closest and dearest friends are her 18p- friends, met at conference. They stay connected throughout the year via social media, texting and video chats.


(Thomas July 2021)

In honesty, Thomas and Lillian have a strained relationship. Thomas discusses this with his therapist, among other topics, and Lillian has been discussing it with her therapist. I am hopeful that with time and understanding they can move through this current phase.

I was a paralegal for ten years before Lillian was born, ending my career as a paralegal in the Civil Division of the Pierce County Prosecutor’s Office in Tacoma, Washington in 2001. After that, my husband and I co-owned a construction company.

After divorcing in 2007, and moving to Reno, I taught myself everything to know about  blogs, blogging, and social media. I became a Social Media consultant to local businesses, teaching a couple of times at UNR’s Extended Studies. After tiring of doing this, I became certified as a Coach to assist special needs families, and published my first book, D iz for Different – One Woman’s Journey to Acceptance. In addition, I became certified as a Reiki Master.

I then moved on to substitute teaching at my kids Montessori school for 3 years. When they both moved to homeschooling, I shifted to becoming my community’s go to pet sitter, and dog walker. We moved from that community in late 2019, and in February 2020 I officially became a Shared Living Provider/Host Home Provider for Lillian (meaning that I get paid). I also manage and facilitate a venue that interviews authors around the globe, MeetingtheAuthors.com.


(All Team TLC Books to date)

Lillian’s book, Where Would You Fly and Other Magical Stories, was published in 2018. Thomas’s book, Biggest Little Photographer, was published in 2016. And, my latest book, Words of Alchemy, was published in 2019. Lillian also has an etsy shop with her artwork for sale – https://www.etsy.com/shop/LilliansImaginarium.


(Lillian when she received her proof book 2018)

Lillian graduated in June 2018. Thomas is in between what is traditionally the 10th and 11th grade. These days I spend a great deal of time advocating for the two of them, putting great amounts of time into researching and educating myself. Thomas has just recently been diagnosed with depression, anxiety, and autism. Lillian is due to be tested for autism in January 2022, which I am pursuing so that she can have access to certain therapies.


(Lillian high school graduation May 2019)

Please reach out to me any time. I’m ready to do what I can.


(Team TLC playing cornhole October 2021)

Email address is CamillaDowns @ gmail.com
Facebook: https://www.facebook.com/camilladowns/
Twitter: https://twitter.com/CamillaDowns
Instagram: https://www.instagram.com/camilladowns/

Websites:

https://camilladowns.com/
https://theteamtlc.com/
https://meetingtheauthors.com/
https://lilliandarnell.com/

Blessings,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

“Words of Alchemy”, published December 2019, is a free-verse poetry memoir covering the last 6 years of my life. The poetry of nature, the poetry of healing, the poetry of appreciation, the poetry of love, in one beautiful book.

Amazing news! My 20 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” was published January 2018. Learn more and order here

Wonderfully exciting news! My 15 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

Throwback Post: No One Made Her Angry But Herself

**THROWBACK POST**

May 2016

This one made my eyes sweat … Another of Lillian’s fairy tale emotion stories. The morning before she wrote this one, I was in a grumpy mood. Many times she will hook into this and catch a ride on the grumpy wave.

She was yelling at Thomas telling him that they had made me angry. I explained to her that no one made me angry except for myself with my own thoughts.

And then later in the afternoon, I read this story she wrote. As with many fiction stories that are sparked by the author’s reality, Lillian’s have a thread of her own reality running through each one. It warms my heart and causes my eyes to sweat …

I’m thinking that the series that she’s writing will be that book I mentioned she and I would write. I’m thinking Mr. Happy Tree will be the narrator (a fabulous tree that Lillian drew last spring or summer). **December 2020 Note: In fact, this story along with Lillian’s writings from age 5 – 16 years old are included in her debut book, Where Would You Fly and Other Magical Stories.**

Angry Candy Story

Once upon a time, there lived a red chewy candy who was always angry and her name was Angel. One day, Angel got angry for some unknown reason. Her candy buddies decided to investigate what could have made her angry but first, they had to look for some possible clues.

While they were investigating, Angel met with her candy friend, Sneaky Spice-Rika who was always acting innocent but Sneaky was hiding something from Angel. The investigators found strawberry flavored licorice, spices, and mint candy. So they went back to their club called Secret Detective Club to plan their next step of the mystery.

They put together a list of suspicious candy suspects with other candy suspects to talk to. The candy suspects’ were Sneaky Spice-Rika, Strawbella, and Sugarlicious.  They set out to talk to Sugarlicious first. “I did see something very unusual, odd, and peculiar this morning.” said Sugarlicious, “I saw Sneaky Spice-Rika near Angel”.  So the buddies said,”Thank you”! and moved on to talk to Strawbella but apparently she didn’t see anything strange.  Finally, they talked to Sneaky Spice-Rika and she said she was only near Angel to talk to her. So they went to Angel to get more facts and she said it was to comfort her. So the investigators went on to explain the whole story.

When Angel had heard the whole story, she chuckled and explained to them that no one had made her angry but herself. She also said that she had a bad argument with her candy parents, Coca and Choc. The investigators went back to everyone what they had learned. First, they stopped by Sugarlicious to tell her what she had thought was actually an act of kindness. Next, they stopped by Strawbella to tell her that Angel had been angry and she was made angry all on her own.

Lastly, they visited Sneaky Spice-Rika to apologize about suspecting her. The investigators thanked her for being such a great friend. Angel forgot about being angry and never got angry again. If you look closely, you can see Angel in any chewy red candy you or your friends eat.

I hope you enjoyed this story. Join us every Friday for the newest edition of Emotions With Animals!

See the full story on Lillian’s blog, by going here …

Angry Candy Story

Blessings,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

“Words of Alchemy”, published December 2019, is a free-verse poetry memoir covering the last 6 years of my life. The poetry of nature, the poetry of healing, the poetry of appreciation, the poetry of love, in one beautiful book.

Amazing news! My 19 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” was published January 2018. Learn more and order here

Wonderfully exciting news! My 15 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

Happy Birthday Lillian Darnell – Deepest Wishes for a Joyful 17th Trip Around the Sun

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

Lillian and I had a full day of celebrating. We began the day with presents and gluten free chocolate cake with cream cheese frosting. Then to Wilbur May Arboretum and after that french fries and dessert.

Next up was an online live facebook birthday party! We ended the date after a dinner at home by going shopping for a new pair of sunglasses and sealing the celebrations with a visit to the pool and hot tub.

If you’re interested in seeing the amazing pictures from Lillian’s special day, go here.

Happy Happy 17th Birthday to Lillian Darnell and Lillian and Camilla September 2018 Date Day

And for past birthday celebrations go here.

Poetry: The Dance of Lillian – Happy 16th Birthday

Blessings,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

Amazing news! My 17 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” is published. Learn more and order here

Wonderfully exciting news! My 12 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

Latest Articles:
[catlist name=blog]

Photography and Poetry: What if it Were You

The Vintage Lake with Empty Bench February 2016

He’s frustrated
He’s not sure how to handle it.

He lashes out
He says unkind words
He insults
He teases.

He’s not sure how to handle it
He’s frustrated.

The mom tells the son
that it is okay to
have these feelings.
Feeling angry, sad,
frustrated is okay.
These feelings are valid
simply because he has them.

He does not understand
why the sister behaves
the way she does.
Does not understand
the inflexibility.
Does not understand
the fears she harbors.
Does not understand
the massive and, at times,
violent melt downs.
Does not understand
the anxiety that
can lead to a melt down.

He becomes critical
and desires something
be done about the situation.
He feels the mom blames
the missing chromosomes
for the sisters behavior.
He feels that the mom blames
him for being angry and upset.

The mom lets him know
that it is okay for
him to be feeling this way
He is not wrong for
feeling frustrated
and angry.

The mom only asks him
to think about this …

What if you were her?
What if …

You could not speak clearly so that others understood you?
You were in near constant pain almost every single day?
You had balance issues and fell constantly?
You were much, much shorter than your peers?
You were much, much shorter than your YOUNGER sibling?
Your body did not cooperate with accomplishing tasks?
You could not easily use a spoon or butter knife?
You could not drink from a glass without a straw?
You could not easily brush or floss your teeth?
You were the one without lip closure?
You were the one with hand tremors?
You were the one with fine motor skill difficulties?
You were riddled with anxiety and irrational fears?
You were the one with an entire section of your 18th chromosome missing?

What if this were you
and not the other?

The mom was not telling him
that these difficulties
are excuses for being
unkind to others.

Simply to ponder
what one’s life would
be like if all that is
easy and simple vanished …

Ponder if it all became
difficult and a struggle …

Simply ponder …

The mom let him know he
could continue to feel
and believe what he chooses.

The mom will not force
her opinions of
the situation upon him.

The mom simply asks him to ponder.

And the mom will ponder
what it would be like
if she were the sibling
to the one …

The mom simply asks him to ponder.

And they shall ponder.

-©2017, Camilla Downs

Empathy has within it the seed to change the world. The more of us that plant and cultivate this seed, the more the world will shift towards peace. -Camilla Downs

I posted this on facebook first and the following are my responses to friends comments:

I can literally feel my heart breaking when Thomas and Lillian are arguing and being unkind to one another and that pours through into these writings.

I can be quite harsh with myself about my parenting skills; thinking I screw it up more than I have it heart aligned.

These are times that journal writing proves so helpful as I remind myself that I’m doing the best I can with where I’m at and give myself a good reminder to love myself. No matter what. Alongside that is when dear friends give me a good reminding too …

It was not my intent to cause anyone to feel less or unvalidated. We are all traveling a unique path; yet, with many, many similarities.

When I am in an unawakened state, I harbor deep worry that Thomas and Lillian will not choose to move towards a relationship of harmony and loving kindness. It breaks my heart to feel the current energies of dislike they have for one another.

Empathy has within it the seed to change the world. The more of us that plant and cultivate this seed, the more the world will shift towards peace.

Blessings,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

Amazing news! My 16 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” is published. Learn more and order here

Wonderfully exciting news! My 12 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

Latest Articles:
[catlist name=blog]

Can a Book Be Published With Little to No Money – Part Three

This is a continuation post and the last of the series.

Below is an excerpt from Part One:

” …. so I’m going to get to the bottom line first thing. And those who are interested about the entire story can read further. Lillian’s book was published with absolutely no money paid out to anyone for the creation of the book. That’s it!

Now, there was a bit of money paid for the ISBN bar code graphic (about $20), for envelopes to mail the books once received (about $15), and for two proof copies of the book (about $15 each which included shipping).

I want to reiterate that I am not sharing this to brag or gloat. That is not my nature. I am sharing this to give hope, to share …… “

Go here to read the previous post if you missed it ..

Can a Book Be Published With Little to No Money – Part One

Below is an excerpt from Part Two:

” …. Thomas and I considered our options between using an online self-publishing site and using a local Reno publisher/printer. We made a chart listing the costs and pros and cons. We had a meeting with the local publisher. After the meeting we decided to go with the local company. I would do as much as possible and they would help out minimally.

Once we decided to go with the local publisher, I began ….”

Go here to read the rest if you missed it …

Can a Book Be Published With Little to No Money – Part Two

“D iz for Different – One Woman’s Journey to Acceptance” was written by me in 2011 and published in 2012. There’s an interesting story on how the book came to be written so if you’d like to read that story go here …

Purging, Weight Loss, and Writing a Book

I wrote the bulk of the book in about three months. When I began writing I had no idea how it would get from the initial writing into a published book. Yet, I did not let that stop me from writing. I knew I was to write, so I wrote. Every morning I got up 30 minutes earlier than I had been, sat outside on the patio, with an expansive view of majestic Mount Rose, and wrote for thirty minutes to an hour every day.

It was either during writing the book or just after I had finished that I began researching how to self-publish one’s book. I decided to use Amazon’s self-publishing arm, CreateSpace. Having no money to invest in this book, was a major factor in choosing this option.

I found friends who were willing to be test readers and editors. I had an idea of what I wanted for the cover; yet, during that same time came across artwork that I fell in love with. The art is created by a young man, D.J. Svoboda, with autism who I had been connected with through a mutual Chromosome 18 friend. I was inspired to ask D.J. if he would like his artwork on the cover of my book. He excitedly answered back with a resounding “Yes”! Another friend designed the initial cover for me at no charge.

D iz for Different Books Shipment of 5 Received 1.11.18

With the cover designed and the book having been reviewed by several others, I dove into Createspace to attempt figuring out how to make what I had into a book! I began to stumble and wasn’t sure how to proceed as it seemed I needed to have Word. I have been an Apple Mac user since about 2000 and have not used Microsoft products since then.

At about the same time, I received a phone call or email from Diana Michelotti to let me know that she is D.J’s manager and wanted to talk about the use of his art on the cover of the book. I contacted Diana and she wanted me to send a few chapters of the book for her review and approval for D.J.’s art.

Not too long after I sent the chapters to Diana for review, I heard back from her that she loved what I had sent and was deeply moved by the content. She wondered who I was going to have edit the book and who would be creating the layout of the book. I told her that I was going to do it myself; that I was stuck for the moment, yet, I would figure it out.

I explained that I had absolutely no money to pay someone for their services. She responded with, “I will do this for you. And, I will not charge you. This is what I do for a living and I want to help you.” She further stated that she believed in the message I was sharing and wanted to help get the book created.

Free Hugs and Smiles Thomas and Camilla at D iz for Different Table 2013

So began the journey of working with Diana. It was a lengthy process as there was much more editing needed than I had anticipated. It was the greatest lesson in patience that I think I have ever experienced. And, I did not handle it in the highest and best way possible, in my opinion.

This was at the very beginning of the huge shift I was beginning to make. A shift of living a spiritually based life; rather than whatever you would call I had been living. I did not see being patient as a lesson at that time. I saw it as an annoyance, something I could not control, and it was bringing forth anxiety and anger. I can see it all clearly now and definitely process these events differently now.

“What a blessing and privilege it has been to work with Camilla Downs and be a part of the creation of ‘D iz for Different.’

Like a bird leaving its nest for the first time – I hope this book spreads its wings, takes flight and reaches those who need to hear Camilla’s inspiring story.” – Diana Michelotti

Less than a year after I began writing it, the book was finally finished and published in May 2012.  And, it was written, created, and published with no money. It was a huge learning experience being the first time I had done anything like this.

Another aspect of the book that came together in perfect synchronicity were the review blurbs. I met the Ziglar family at a conference in 2010 and had kept in touch with Zig Ziglar’s daughter and grand-daughter. When the time came, I asked Julie Ziglar Norman if she would like to write a review blurb. She loved the book and agreed!

A connection I had made through a local networking group approached me one night to say she had been working with someone she thought I should connect with. She connected us via email and after he emailed me back I went to his website only to discover that this person is Jim Stovall!! Author of The Ultimate Gift which was also made into a movie. He was happy to offer a review blurb. I LOVE the movie, by the way!!

There was much I did not include in the book. Not to mention that my writing has evolved since this book and has a completely different flavor now. Don’t get me wrong. I love the book and it’s contents. I still have faith in what I wrote; I can simply see the difference now. The content is mind and brain heavy and not so much from the heart. I barely skimmed the surface of my essence with the book and, in fact, some of my views have shifted a bit since its writing. And, as stated earlier, I have become deeply spiritual since ‘D iz for Different’ was birthed into a published book.

I see it all as part of the process and part of my journey. We all change throughout our lives. Some more so than others. This book was supposed to be “light” and to only skim the surface. It was the toe dip into the author’s ocean for me. A toe dip to test the waters. I am thankful it was met with such a warm reception and enthusiasm.

There is much I wanted to say in the book, that I did not say for fear of offending or turning others away. Fear. What a lesson it has to teach us. I no longer have this fear as one could most likely surmise by reading the writings that currently come forth. Fear is simply love going in the opposite direction and I have tipped the scales so that fear and love have embraced in an ecstatic burst of love creation through writing.

I vow to write. I vow to listen for what to write. I vow to write even if no one reads what is written. I vow to write even if it turns some away. I vow to write for the writing is the food that feeds my soul. I vow to write until the day I am no longer inhabiting this beautiful Earth. I vow to write.

Well, I had not intended all of this to come forth. Yet, there it is. In all it’s grace and glory! Once it turns on, I cannot turn it off until it’s finished!

Back to the book …. The book reached #2 in the Self-Help Category and #1 in Special Needs Parenting on Amazon. The last I checked it had a 4 and 1/2 star rating on Amazon. Sales have absolutely fallen flat and I no longer market the book. In 2013, I let shame and fear that the book was no good take over and I abandoned further marketing.

‘D iz for Different’ is about to receive a facelift by way of a new cover as this cover seems to no longer be in sync with my heart. I love and adore D.J. and this does not speak less of his beautiful art, nor does it speak less of the hard work Diana put into it. This is all about me and what my heart dictates.

So … YES! A book can be published with no money!!

And stay tuned for the updated cover!!

And, stay tuned for the next books to be published. There will be another book coming near the end of this year or beginning of 2019.

Blessings,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

Amazing news! My 16 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” is published. Learn more and order here

Wonderfully exciting news! My 12 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

Latest Articles:
[catlist name=blog]

Can a Book Be Published With Little to No Money – Part One

I recently read a post in a writing group from someone about envy arising in some members when it is announced that other members finally have a published book! The writer of the post was not being unkind. She simply wished to share why envy is not called for in this situation.

While I don’t agree with the reason indicated, I do agree that it’s in our best interest to catch the feelings of envy and jealousy when they arise. Notice the feeling. Physically feel it and release it. And, by the way, I am not immune to having these feelings either. If they do sneak up, I try my best to do what I previously describe above.

And, when you feel ready, replace it with joy and gratitude for the abundance of the world and celebrate the success with this person. As just because they have accomplished this does not mean it is less likely that you will, it does not take away from your efforts at doing the same. Instead of “Why Him? or Why Her”, think “Why Not Me?” …

On the opposite end of envy and jealousy is inspiration and the knowing that you too can accomplish that which you desire.

As long as you believe it and you believe you are worthy of birthing it to life. Those who are meant to assist will appear.

The writer of the post concluded that the reason that these individuals are published is because they had the money to do it. She is a published author of several books so was speaking from her experience. Her thoughts were that if you have enough money, a publisher will publish the book as long as it fits their criteria and that the publisher doesn’t care if it’s good or not; as long as you pay them.

She further indicated that family and friends will request free books and the author is lucky to receive 10 free books from the publisher and that there are those who become upset when referred to amazon to purchase the book. I do not relay this to contest or argue as that’s not my nature. I fully understand that this may be the experience of some, perhaps many. I only want to present that there is another way and there are those with a different experience.

I’d like to share my experience now that I’ve published three books. Oh my gosh! I’ve published three books! Wahooo!!! Let’s celebrate!! ….

I’ll begin with the latest. My 16 year old daughter, Lillian’s, book – “Where Would You Fly and Other Magical Stories”.

Matte v Glossy Where Would You Fly Book January 2018

This will be quite lengthy, so I’m going to get to the bottom line first thing. And those who are interested about the entire story can read further. Lillian’s book was published with absolutely no money paid out to anyone for the creation of the book. That’s it!

Now, there was a bit of money paid for the ISBN bar code graphic (about $20), for envelopes to mail the books once received (about $15), and for two proof copies of the book (about $15 each which included shipping).

I want to reiterate that I am not sharing this to brag or gloat. That is not my nature. I am sharing this to give hope, to share light with others who may feel that which they believe they are supposed to share with others may never come to fruition. Please don’t give up. If you know you are supposed to share something, begin to take steps. Start where you are. Don’t let the “How” of something five steps away stop you from taking the first step.

Lillian and I began writing stories together when she was four-years-old as I felt then that I was supposed to write and she wanted to write too! Lillian has a chromosome deletion that affects 1 in 56,000 people (named 18p-).

Where Would You Fly Updated Cover 9.2017

One of the main ways it manifests is her ability to articulate letters and words. She is largely unintelligible when she speaks. If you’re interested in learning more about Lillian you can go here on my blog and visit her blog here. To learn more about her book go here.

Shortly after we wrote a few stories together she began writing her own stories, poems, and songs. I made it clear that one day we would write a book together. At 16-years-old she is now a published author!

I didn’t know how I was going to make it happen. Yet, I have this quirky thing about me where I do not let the how stop me. I simply get started with where I am and with what I have.

In late Spring 2016 I began sifting through Lillian’s blog posts and handwritten stories. I remembered that years ago a fellow chromosome 18 mom had let me know she was a graphic designer. At the time I was working on websites and social media for businesses so that’s how her message came about.

Camilla and Lillian with Where Would You Fly Book 12.22.17

I messaged Kate and asked how much she would charge to create the book cover and if she was able to help layout the book using Amazon’s createspace (Amazon’s self-publishing arm). I sent this message knowing full well I did not have the money to pay, yet, again, I do not let that ever stop me. I ask. I continue moving forward. I figured if I knew how much she charged, I would have a number to keep in mind for accruing.

Kate messaged that she would help us for no charge. So began the journey of bringing the book to life. I spent hours and hours and hours pulling together the stories, organizing them, and editing them. Kate spent hours and hours and hours creating the cover and having a hell of a time maneuvering through createspace.

If you perform a search for createspace and reviews/opinions, you’ll see what I mean!! Kate was a trooper. She would not give up! The interior would be perfect on her end. Then, after uploading to createspace, it would go all wonky. Random spaces and markings in the book. It was no picnic for her!!

I performed the editing of the book with Thomas, my 12-year-old, as an assistant editor. I have a dear junior high school friend who edited the Forward and About Author section for me (since I wrote those, I needed someone else to edit).

I already had an ISBN as I purchased a block of ten back in 2006 or 2007 as I knew in my heart they would be needed. We’ve used four now!! I handled contacting the library of congress for the LCCN. I procured the bar code graphic.

I researched and created the copyright page information and the Publisher’s Cataloging-in-Publication data; including the dewey decimal number classification. I also requested and received book endorsements. I will be creating the book trailer, the press release, and handling the marketing, and setting up book signings.

I have not had any family member or friend ask to receive a book for free. I, however, have offered it in trade to a few people as I didn’t have the money to pay for services (haircut, mandala class for Lillian).

That goes for Thomas’ book and my book too. No one ever asked for a free book. However, I did gift and trade some books. I am also not shy of telling others that our family earns more money when the book is purchased directly from us as opposed to purchasing on Amazon.

However, we are happy whichever way people choose to purchase. The bottom line is it doesn’t matter where they purchase it. Yet, they may never know or understand how it works if I don’t share the information.

I will continue with Thomas’ book and in a second post and my book in a third post as this one has gotten way too long!! Stay tuned …. Part two to follow next week. Go here to read Part two …

Can a Book Be Published With Little to No Money – Part Two

Blessings,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

Amazing news! My 16 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” is published. Learn more and order here

Wonderfully exciting news! My 12 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

Latest Articles:
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Latest News: Where Would You Fly and Other Magical Stories – Published

Camilla and Lillian with Where Would You Fly Book 12.22.17

A project that began in June 2017, is now complete!

Lillian Darnell, my 16 year old special needs daughter, is now a published author! January 2018 is the official publication date and we are awaiting the arrival of the first shipment of books!

Where Would You Fly Updated Cover 9.2017

When I began I did not know how it would move from the idea stage to the published book that it is today. As with other projects I undertake, I just began and let it unfold organically. I am writing a blog post with more details which will publish this week or next.

I am working on the press release and book trailer now and we will let you know of the book launch date and book signings.

“Where Would You Fly and Other Magical Stories”

Welcome to the radiant imagination of Lillian Darnell, a wonderful and unique human being, the kind who comes around only once in every 56,000 births, as she is missing the short arm of her 18th chromosome.

Leave this reality behind and enter enchanted lands awash in mysteries, happy endings, adventures, and inspiration. Come within and discover heartwarming and beautiful tales, woven with love and magic, brought forth from the imagination of a young woman with a different perspective. Lose yourself in wondrous adventures as you follow courageous, enchanting characters, kind animals and plant life, and graceful Mother Nature.

The delightful tales, legends, and poems within these pages were written by Lillian Darnell between the ages of four and fifteen. The stories and poems are mostly edited for spelling and grammar, yet the bulk of the stories remain as she originally wrote and published them to include a few grammatical errors and made up words.

Will a girls dream of becoming a princess come true?
How can sad, mischievous, fearful animals help humans feel emotions?
How did the world come to have color?

“You can’t help but feel happy and be inspired while reading this book. Lillian’s stories jump straight out of her heart and onto the pages in an authentic, innocent, and loving way. The world needs more positivity and happiness and her stories are bursting with both. Thank you Lillian!” -G. Brian Benson – Award-winning and best-selling author, actor and TEDx speaker.

“Let your imagination be taken away with Lillian Darnell’s writings and allow yourself to be transported to places where anything is possible with love, joy and a touch of inspiration. This collection is born from a young woman with a unique perspective on how our world could be – immerse yourself and come, see the world through Lillian’s eyes.” -Dr Veronica Wain – Award winning filmmaker, Academic, Author, Disability Advocate

“Although all of us who love fairies understand that children, with their vivid imaginations, are closer to magic than any of us, we all yearn to retain that childlike sense of wonder. Lillian Darnell’s writings are a welcome reminder of what is possible when you dream big, and accept no limitations.” – Grace Nuth, Senior Editor – Faerie Magazine

To order, please use this PayPal button or mail a check to: Camilla Downs, PO Box 19812, Reno, NV 89511. The cost with shipping is $19.00 (Only for our U.S. friends. Our Canadian and overseas friends can contact me at CamillaDowns @ gmail . com … )




Matte v Glossy Where Would You Fly Book January 2018

Blessings,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

Amazing news! My 16 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” is published. Learn more and order here

Wonderfully exciting news! My 12 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

Latest Articles:
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Poetry: The Dance of Lillian – Happy 16th Birthday

Team TLC Sunset Walk Damonte Ranch Trail 6.18.17 #15

I’m a month late posting this, yet I promised Lillian that I would write a post dedicated to her …. xoxo

The Dance of Lillian

She came into this world
with her own agenda.
She came missing the short
arm of chromosome number 18.

Never mind what they
thought about how
they would parent her.

They would quickly
learn no parenting
manual existed for
the lessons she was
to bring with her
through this incarnation.

She delivered the
gift of shattered
expectations early
in her Earth life
as Lillian.

She had chosen
as a mom someone
who had many uncomfortable
lessons to learn.

Patience was to
be another of the
lessons she brought
with the tiny little
body she inhabited.

She was not done yet.
The next gift delivered
flowed into their
lives as a pure
cold stream runs
through the land.

That message.
Acceptance.

Acceptance of what life
had delivered and would
deliver.

This little bundle
that grew into a bright
shining light had
many lessons bundled within.

The next was to be
release of judgments.
Oh. That one stung
worse than an unwanted
bee sting on a warm
sunny day. A sting
that lingered for
years, resurfacing
at just the right moment.

This little bundle
who could be anything
but a bundle of joy.
A bundle of anger,
anxiety, violence, and
all kinds of negativity.

With this bundle
came the lesson of
living in the present
moments of life.
Being mindful and
learning the art
of mindfulness.

Responding to this one
from the present moments
of life instead of hurts
from the past. Oh. This
was one of the hardest
lessons yet.

This had nothing to do
with this little bundle,
now a blossoming teen.
As she may have come
into this world in all
her nakedness.

Yet, she contained in
the fibers of her very
being, a Divinely pure
mirror that served to reflect
to the one called Mom
the lesson that it
was she who needed
to go within, to
confront her past,
to feel what she had
not wanted to feel,
And release it.

This would be the Mom’s
lesson of learning how to
live in the present moments
of life and to embrace the
art of mindfulness.

Four pounds and five
ounces of life changing,
life altering, life correcting
joy arrived on the evening
of September 14 2001.

Gratitude does not
even begin to describe
what the Mom feels about
the tiny bundle and she
deciding to have these
roles in this life.

The blossoming teen
was the catalyst
to teaching the mom that
she had it all wrong.
She and all children
are our awakeners.
They are not to
be pushed to the side,
put in the corner,
talked down to,
treated harshly,
abused, controlled,
barked at with commands
and “because I said so”
ridiculousness.

They are to be
respected and
treated as equals.
They may inhabit tiny
little bodies when they
first arrive.

Yet, the souls within
these tiny precious bodies
have much to teach us.
She came in missing
the short arm of her
chromosome number 18.

The lesson that encompasses
all of the other lessons
she brought forth.

Different.

She taught the mom
that she was going to be
the one who lives life
differently.

Mom learned how to live
life from the heart,
trusting the whisperings
of the heart.

She, who now enters
her sixteenth orbit
around the sun in this
Lillian body.

Happy, Happy Birthday
YOU beautiful being.
Thank you for blessing me
and being my awakener.

I Love You,
Camilla
Your Earth Mom

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

In addition to this, I thought it would be fun to link to her birthday posts over on the Team TLC blog and past birthday posts!

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

She Spread Her Wings …. And Flew – Happy 15th Birthday Lillian

Happy 14th Birthday Lillian

Happy Birthday Lillian … Camilla

Blessings,

Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

Amazing news! My 16 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” is arriving November 2017. Learn more and order here

Wonderfully exciting news! My 11 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

Latest Articles:
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11 Ways to Help Team TLC With Attending the Chromosome 18 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 …. Go here to read the full post ….

Help Team TLC With Attending the 2017 Chromosome 18 Family Conference

Blessings,

Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

Wonderfully exciting news! My 15 year old daughter, Lillian Darnell’s book, Where Would You Fly and Other Magickal Stories will arrive soon. Be ready to enjoy the magick! Learn more and pre-order here.