The 2023 Chromosome 18 Conference Begins – Part 2

July 9 2023

Just back from my first walk in Columbus. Stunning grounds. And it wasn’t too hot. Bonus!! Not sure these folks have experienced a tattooed woman walk-dancing around the grounds. Now they have!

Photos from today. These people are so precious and amazing.

I absolutely love the photos of the Giggling Trio – Lillian, Macy, and Lauren. They light up around each other, and it is beautiful to experience. ❤️❤️❤️

A Different Role – Chromosome 18 Registry

May 16 2023

Chromosome 18 Registry & Research Society – New Member Zoom Session

Some of you may not know that I am the 18p- Volunteer Coordinator for the Registry. You can read more about that here:

Latest News: New Role as 18p- Volunteer Coordinator

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 21 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 17 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

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.

The Number 18: Happy Birthday to Lillian Darnell

The Number 18

Today is your 18th Birthday.
Lillian Paige Darnell is 18 years old today.

I can still see you in my mind’s eye
as a wee lil 4 pound sweetheart
as I wondered and dreamed
about your journey to adulthood.

Wow! Did we take giant
twist and turns,
paths less traveled.

Little did I know as I snuggled
you close, sang to you (sorry about that),
and read, read, read to you;
that the number 18 would come
to be a powerful number for you,
for us, in more ways than we could imagine.

When you were 3 years old,
As we sat eating dinner,
As the phone rang,
As the pediatrician delivered
news – 18p- she said,
missing the short arm of
chromosome 18, she said –
that rendered me speechless,
with tears sliding down my face
into a dinner I could no longer eat.

Little did I know at the time
that this was not the horrible
news I assumed it to be.

Oh yes. Life changing, for sure.
Yet, not in the way my mind
led me to believe in those first few weeks.

There is no way on this Earth
I could have foreseen how
life changing this would be for me.

Life changing for me so as to
let you be who you came here to be.
For that to happen unconditionally
and organically, I had much learning to do.

Not just learning about genetics,
chromosomes, DNA,
and the effects of deletions of genes.
That was the small stuff compared to
the enormity of the path that lie ahead.

As you step into adulthood on this day
It is my deepest hope that
I have made more decisions for
the highest good, than not.

It is my deepest hope that the times when I have
remembered to share and be unconditional love
stand out and far outweigh the times when
I have not been at my best.

May the wishes you wish come true.
May the dreams you dream become reality.
May the sunshine light your way ever more.
May the moon teach you it’s secrets.
May the birdsong always sing sweet melodies to your heart.

May you step into adulthood
with iridescent rose gold fairy
wings of the highest and brightest
as you take flight on the next
greatest adventure of your life.

I love you
I honor you
I respect you
I am grateful for all that you
have taught and continue to teach me.

You are You
And You Are Perfect!

Love,
Camilla
Mom

Lillian put together 18 wishes for her 18th birthday; which she shared in the live facebook celebration.

Here they are ….

1. I wish Macy, Lauren, Kaitlin Baker, and Rebecca could come to Reno, NV.
2. I wish to be able to drink out of a cup/glass without a straw.
3. I wish to be fearless.
4. I wish for infinity art and crafts supplies.
5. I wish for infinity clothing.
6. I wish to be able to travel around the world with my friends and/or by myself.
7. I wish for the Earth to be healthy again.
8. I wish for the Earth not to die.
9. I wish to be less picky.
10. I wish to live with my friends.
11. I wish to be less vulnerable to spicy hot stuff.
12. I wish to have a dream home.
13. I wish to have a dream vehicle.
14. I wish to see Hawaii.
15. I wish to go to Florida.
16. I wish to have infinity photography supplies.
17. I wish to have more friends.
18. I wish to have two beds.

We celebrated all week as Lillian had a long list of things she wanted to do. It was a full week of shopping for new fairy wings, going for walks in her favorite places, going swimming, eating fries and desert at her favorite place, having dinner with The Romano Duo (grandparents), and ending with a live facebook celebration.

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

Coming Soon!! “Words of Alchemy” is the latest book coming to life! Coming Fall 2019.

Amazing news! My 17 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 13 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

The Magic She Carries in Her Heart – Book Review of Where Would You Fly

Lillian and I are deeply grateful for this wonderful, heartfelt and thorough review … So lovely that my eyes pooled with liquid gratitude when I read it last night. Thank you Katie!! 💜💜💜


(Lillian at the Barnes & Noble book signing in November 2018)

Excerpt from the review ….

” …. I also loved the beautiful drawing and photos of Lillian and her family. This really made the book feel even more special. I also think reading about how special Lillian is can only make you feel blessed to be able to see the magic she carries in her mind and heart …. ”

Please visit the below link to read more and if you feel moved, we would be incredibly grateful for you to “like” the post and/or comment.

My Review of Where Would You Fly?: and Other Magical Stories Author Lillian Darnell

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” was published January 2018. Learn more and order here.

Wonderfully exciting news! My 13 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

Go here to see latest soul writings. xoxo

 

Live Your Life as a Fairy Tale – Guest Post by Lillian Darnell

On April 1, 2019, Lillian and I were a guest on the lovely Katrina Marie Hart’s blog to share a bit about Lillian and her debut book, “Where Would You Fly and Other Magical Stories”. If it feels right, we would be grateful for you to visit Katrina’s site to read the article in it’s entirety, and like or comment with your thoughts.

Here’s a wee bit from the article:

” …… My inspirations for writing are nature, coloring, drawing, reading, something I catch myself saying, food, and holidays. Most times my writing flows through me like a river.

Some of my favorite foods are French Fries, cheese (dairy and vegan – dairy bothers my stomach), dark chocolate, snickerdoodle cookies, chocolate cake, gluten free powdered donuts, and strawberries. I really enjoy volunteering at our local library one day a week and my family and I …. ”

Visit the below link to read further …

Live Your Life as a Fairy Tale by Author Lillian Darnell.

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” was published January 2018. Learn more and order here.

Wonderfully exciting news! My 13 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

Go here to see latest soul writings. xoxo

Latest News: Help Spread the Word for Lillian Darnell’s Fundraiser

Want to help spread the word for my special needs daughter, Lillian? She is fundraising to help pay for our attendance at the annual Chromosome 18 conference this July in Colorado Springs.

Who wouldn’t love a custom poem created just for them? That’s exactly what Lillian is offering for her fundraising efforts. Lillian is a natural poet and loves writing poetry.

For anyone new here, Lillian Darnell is my 17 year old special needs daughter. Her condition is called 18p- as she is missing the short arm of Chromosome #18. We attend a yearly conference every summer specific to her condition. She is adamant every year that she help raise money for us to attend as it’s darn expensive for a family of 3.


(Group Photo from the 2018 Conference in Baltimore)

The poems will be nature themed, fairy themed, mermaid themed, or unicorn themed. Every poem created will be different and uniquely yours!

Please feel free to share this post with others who appreciate poetry and love supporting artists and fundraisers!

Sample poem above … Oceans of gratitude and LOVE! Visit the link below to learn more about this from Lillian …

Fundraising for the 2019 Chromosome 18 Family Conference – Poem Creativity

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” was published January 2018. Learn more and order here.

Wonderfully exciting news! My 13 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

Go here to see latest soul writings. xoxo

 

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.

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