Movie Night: Stars Wars III – Revenge of the Sith

March 30 2019:

Extra movie night for Team Member T and C while Lillian is enjoying time with The Romano Duo. Thomas’ choice: “Star Wars III – Revenge of the Sith”

Thomas says, “It was good and like the music.”

I say, “Now I’m complete with seeing the prequels. I liked this one; even though I didn’t like it. If ya know what I mean. Not a fan of the dark side! 🤪Always good music.”

We jump to Number VII next as I’ve seen the 3 original series many times. Thomas has seen them all. He just wanted to watch from the beginning with me. ♥️♥️♥️

Fundraising for the 2019 Chromosome 18 Conference – Lillian

Sharing for Lillian Darnell (my daughter for those who don’t know) …. She is one determined being with this every year. She will continue to ask me for ideas every other day with a determination and steadfastness that rivals a future Olympian in training …

“Hey, everyone! For this year’s fundraising efforts for my family to attend the Chromosome 18 Conference in Colorado Springs, I decided to make customized poems. Here’s some information on the poems:

The poems will be nature themed, fairy themed, mermaid themed, or unicorn themed. Every poem created will be different and uniquely yours! You can get a decorative border around the poem, incorporating recycled materials; or simply the poem emailed to you.

Now, here’s some information on what the Chromosome 18 annual conference means to me:

The Chromosome 18 conference means a lot to me because I get to meet new friends and spend time with old friends. It also means a lot to me because I get to travel to a new city with my family.

The Chromosome 18 conference helps me get over my fears and my emotions. It helps me feel brave, courageous, and enjoyable. Here’s an example: In July 2017, when my family and I were inside the airport, I was fearful, nervous, tired, and afraid; yet, the view I got from the airplane was amazing and it was all worth it.

Here’s a poem as an example:

Butterflies dash and play
Within the golden sunbeams
Dancing in the afternoon sky.

Butterflies fly in the sky like a colorful moving rainbow
Glimmering in the sky.
The sky sparkling like water.

Butterflies dance freely along
the water.
Water sways as it’s greeting the butterflies.

©2019 Lillian Darnell

You can still purchase prints of my abstract artwork also.”

from me: Lillian has a condition called 18p- which means she is missing the short arm of chromosome #18. The ways in which this manifest for her are: difficulties with articulation, balance and depth perception issues, chronic pain, difficulties with handling strong emotions, and irrational fears and worries.

Her only friends are through the Chromosome 18 group. She always chooses one fear to conquer leading up to the conference. This year it is her fear of taking a shower (she’s always taken baths). She’s nearly conquered it already! The conference is like one long therapy session for the entire family as there is a track for parents/caregivers, a sibling track, and a self advocate track.

Feel free to share this with any you know who enjoy supporting artists and fundraisers.

(Photo of Lillian on one of our date days; and a message from Lillian, table centerpiece and a group photo … All from the 2018 conference in Baltimore)

Go here to learn more ….

Fundraising for the 2019 Chromosome 18 Family Conference – Poem Creativity

 

Cold Sunset Walk With a Bunny and Horses

March 28 2019:

Thomas and I went for a sunset walk after dinner. Wow! That was cold! I see a bunny in the sky!

Lillian left this afternoon for a 3 day weekend with The Romano Duo. Yay!!! I am deeply tired and looking forward to 3 nights of uninterrupted sleep. I love you lots Lillian …. but I gots to get some sleep!!!

March 29 2019:

On the hour long walk this morning I passed by a few wild horses just strolling down the trail. I told them they were beautiful as I walked by, stopped for a millisecond to take their photo, and thanked them. Beautiful beings.

Blossoms, bees, sunshine, blue skies, wild horses, and an abundance of bird song. It was an amazing and magical hour long walk today.

Lillian and Camilla March 2019 Date Day

March 26 2019:

Lillian and Camilla March 2019 Date Day …. Lets be true and authentic here. I don’t post behind the scenes a whole lot. Yet, feel it’s important as a society not to hide the unloveliness of life.

It’s been more than a week since I’ve had uninterrupted good nights sleep. Last night Lillian woke me up about 4 times.

This morning after waking up, Lillian threw up. Just a random throwing up episode. She used to have this happen quite often. But, it’s been years since the last occurrence.

She did not want to call off her date. Even though it was going to be a short date as I had a 1:00 doctors appointment for Thomas.

So … at 3:00 we left the house for her traditional fries. Now, for the date details. 😃🎉

Fries for Lillian (and me!) Vegan brownie for me and iced sugar cookie for her. She wanted to go for a walk; but was too tired. So, we went for a nice drive through our old neighborhoods. Pulled over and took this amazing photo!! 💚💙

She’s quite the stubborn gal. She didn’t want to wait until nevt week when we had more time and when she felt better (and me too) as that would not be a March date in March. It would be a March date in April. Ugh!

The Most Perfect Time

Right now, today, this week would be THE most perfect time to add any of these to your collection or to share with a loved one. There’s also The Alchemy of You Mentoring … Thank you for sharing … Deeply grateful …

D iz for Different – One Woman’s Journey to Acceptance by Camilla Downs

Biggest Little Photographer by Thomas Darnell

Where Would You Fly and Other Magical Stories by Lillian Darnell


Rainbow of Emotions by Lillian Darnell


Happy World by Lillian Darnell


Egyptian Eye by Lillian Darnell


Rainbow Mandala by Lillian Darnell