The Road Trip Adventure That Was the 2019 Chromosome 18 Family Conference

In July we attended the 2019 Chromosome 18 Family Conference in Colorado Springs, Colorado. It was the 4th time since 2008 that I had driven to the conference. I finally learned my limits with this drive. In this case, the fourth time’s the charm!

I posted a daily account of the adventure on our Team TLC website, loaded with great photos, especially the photos of The Garden of Gods.

The Wild and Crazy Journey to the 2019 Chromosome 18 Family Conference in Colorado Springs

I want to once again thank the Good Samaritan’s we encountered along the way, the wonderful people who donated to our fundraiser, The Romano Duo (my mom and step-dad) and the angel mom who paid for us to stay an extra night so I could have one more day to recover from the horrid norovirus that swept through the hotel guests. 

For the most part, we enjoyed ourselves as much as possible with the drive there and back, and while at the conference. If you take the time to read the post linked, you’ll see it wasn’t all peaches and cream. There were some definite unlovely and maddening experiences. Horrendous traffic, car accidents, car problems, melt downs, and the nasty norovirus that swept through hotel guests and all three of us. The last unofficial count I saw was about 200 people got hit with it! 

Thomas and I had a beautiful time visiting The Garden of the Gods. Definitely check out those photos in the linked post. Magically beautiful. We also had a lovely rest stop at The Salt Flats in Utah; which was deeply refreshing. Here are a few photos from each of these wonderful places.

Lillian had many firsts and conquered a few fears along the way. It’s always a blessing to see her reunited with her best friend and making new friends too!

Ending with what I’ve learned about my limits with attending the conference. The first drive was to Las Vegas in 2008. That was an easy 8 hour drive from Reno to Vegas. The second time was another easy 8 hour drive from Reno to Salt Lake City in 2015. The third was a nightmare 3,400 mile drive from Reno to San Antonio in 2016. I wrote about that one here and here and here.

I have learned that any destination 9 hours or less is do able for me. Over that, where we have to make a stop and stay some place for the night is too much (for me). Yes!!! For continuing to learn about my own limits. From this point forward it will be easier to decide how we will get to the conference every summer.

At some point in the future, it is my plan for Lillian to travel to the conference without me. If she and Thomas can reach a point of getting along and respecting one another, they can travel together. Or, if that doesn’t happen, hopefully one day she can travel with a friend, or even alone. That’s the plan and we’re making our way to it’s fruition! 2020 Conference will be back in San Antonio! See y’all there!

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 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.

Keep Believing – Adventure is Always There

Dear Lillian,

I am proud of you.
I love you.

You did it
You continue to do it.

You shine that bright sparkling smile
Upon all who’s eyes you meet.

You did it!
From high school
You have Graduated!

You, we, did it different.
And, that is okay.
In fact, it is perfect for we.

Not everyone is meant
to do life as it has always been done.

This is what creates
the rich and vibrant soup
of human life.

There are those who follow the path
of doing it different.
There are those who follow the path
of the way it’s always been done.
No path is better than the other.
Whether the same path as another is
followed or a different path is followed.

The paths are equal.
Yet the benefit to humanity
is vast in the variety
and depth of ideas,
the dynamic expressions,
that bloom when each of us
travels the path of our hearts.

You continue each day
in the face of chronic pain,
communication challenges,
depth perception and balance difficulties,
fine and gross motor awkwardness,
emotional struggles,
indecision worries,

You continue each day
with that bright sparkling smile.

You continue each day
Knowing what you want in this life
Knowing what you want to achieve
Knowing how you want to live

You continue each day
meeting all that life has put forth for you.

I honor you.
I honor and support the fierce
warrior within you who
knows her heart’s desire.

I honor you.
I am proud of you.
I love you.

YOU DID IT!

Happy Graduation to YOU!!

Love,
Camilla
Mom

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

 

Poetry: The Long Weekend

On January 17 2019, Lillian Darnell left for another long weekend with The Romano Duo (grandparents) ….

I look forward to these days of respite.
She looks forward to them.
Yet, every time she leaves to spend days away,
My heart is surrounded by a tingling sadness.

It’s such an interesting feeling.
When tingling sadness dances with peaceful contentment.
They pair well.
Sharing wisdom and shedding Light.

I take the hand of tingling sadness and peaceful contentment.
We embrace and dance to the tune of an old and worn knowing.

And the small, barely there rain drops fall
to slowly make disappear her foot prints,
as she joyfully leaves me.

Loving this dance with life
Living this dance with life
What a Life!
Hey, come and get it
Keep it coming,
Get your dance card and let’s dance.
-©2019 Camilla Downs

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 arriving 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

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:
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Be Yourself and Enjoy Life : An Interview with the Author of Where Would You Fly

Matte v Glossy Where Would You Fly Book January 2018

Welcome everyone to a very special interview with Lillian Darnell, author of Where Would You Fly and Other Magical Stories. Here’s a bit about the book:

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?

(Go here to view the interactive Google Pin Map of Where the Book Has Flown So Far)

Lillian Getting First Order of Books Where Would You Fly 1.24.18 #1

Camilla: What types of stories are in “Where Would You Fly”?

Lillian: The types of stories in “Where Would You Fly” are poetry, songs, riddles, fictional stories, and fantasy stories.

Camilla: What inspires your writing?

Lillian: Nature, reading, something I say, food, holidays, and more when I can’t think of something to write. Other times though, my writing flows through like a river.

Camilla: What message would you like readers to take away from your collection of tales, legends, and poems?

Lillian: I would like my readers to take away from my tales, legends, poems to enjoy nature, be yourself, enjoy life, and enjoy reading as much as you can too.

Camilla: Is there a particular author or authors that inspire you?

Lillian: Camilla Downs (my mother), Daisy Meadows, Helen Perelman, and L.M. Montgomery are the authors who inspire me a lot.

Camilla: Are you still writing? If so, what types of stories do you write?

Lillian: Yes, I still write. The types of stories I write now are mostly historical and fantasy stories on my blog which is http://www.lilliandarnell.com/.

Camilla: What is your favorite story that is in “Where Would You Fly”?

Lillian: My favorite is all my stories in the book but if I had to choose just one, I would choose the story Princess Beauty.

Lillian Getting First Order of Books Where Would You Fly 1.24.18 #3

Lillian Darnell is 16 years old. She likes to read, draw, paint, write, track weather and enjoys being in nature. She has 18p- which is a chromosome difference that affects 1 in every 56, 000 people.

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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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:
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