June 1 2019:
Book signing for Lillian today!!! Fifteen books signed! 🎉🎉🎉The Romano Duo came by to deliver a graduation gift to Lillian!
May 29 2019:
First round of senior/graduation photos for Lillian. She’s wants photos at a different location too! Ha!
This was the perfect spot for the first set. The little garden behind the library. We’ve been coming here ever since she was 5 years old.
I’ve taken tons of photos of the three of us in this little garden throughout the past 12 years. 🙏🎉💗💗💗🎉🙏
May 31 2019:
Lillian’s live facebook celebration …
May 15 2019:
Just ordered Lillian’s high school graduation diploma and tassel. Now to get the announcements. If you’d like to receive an announcement, message me your email address or post it here. Why do I have butterflies in my stomach? HA! 💜🦋🦋🦋💜 Thanks to my daddy, Robert Downs, for helping with this part! 🙏💜f
May 18 2019:
Look what came in the mail today!! 😳😃 Shhhhh … Don’t tell Lillian. Although, she’ll probably see this post! June 1st is fast approaching! Take that you blankety blank blank geneticist! You don’t have to be highly intelligent and a math whiz to be successful in life and contribute to society!! And you don’t have to do it the way it’s “supposed” to be done.🖕🏻
May 6 2019:
Have spent nearly all day creating Lillian Darnell’s High School Transcript! Oh my goodness! Her official graduation date will be June 1st; which also happens to be National Donut Day … HA! And, the book signing event at Barnes & Noble!
We’ll be celebrating with donuts and books!! I’m sure we will have a wee live online celebration for Lillian’s long distance friends and family too. Stay tuned … What a journey!
May 5 2019:
Keep forgetting to share … Lillian Darnell has been invited to Barnes & Noble again on June 1st for a book signing event. I’ll be there as her helper. We’ll most likely be there between noonish – 2:00 or 3:00. Come see us!
May 1 2019:
Today was a beautiful day to mail a “Rainbow of Emotions” print!! Thank you Steve for supporting Lillian’s fundraiser! 💗🎉🎉🎉💗
Would you like to help support Lillian’s fundraiser? Go here to learn more … 2019 Chromosome 18 Conference
THE FLYING UNICORNS CREATE A RAINBOW
The unicorns weren’t always flying. One day one of the unicorns found a flying powder and they started flying! Shortly after they found a rainbow can in the sky. They painted rainbows in the sky.
But one day they couldn’t fly in the sky. Suddenly they found a clue and they were off to find their powers.
The people began wondering what happened to the unicorns. The delivery person had come out of nowhere and said that the unicorns lost their powers.
Some of the people began murmuring, “Terrible.” They decided to help them. When they got there, the unicorns explained everything.
They finally found the final clue along with their powers; as well as who put them there.
The unicorns discovered that it was the small creatures. After that, they showed no one their powers. They kept secret all the time.
(Written April 2014 at 12-years-old) – ©from the book, Where Would You Fly and Other Magical Stories by Lillian Darnell
April 2 2019:
(Picture of the book traveling on the train in The Netherlands)
Lillian and I were a guest yesterday on a sweet and kind book blogger/reviewers website. I’m biased; yet, I think it’s a great article! Titled, “Live Your Life as a Fairytale” …
If it speaks to you, we’d be grateful for your time reading it and liking or commenting. Thank you!!! Link below …
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
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 ….
March 17 2019:
Last November, Mike and I participated in a book signing for local authors at Barnes & Noble. Lillian Darnell and her mother, Camilla Downs, were seated next to us. I noticed a drawing that Lillian had done and mentioned that I could make a quilt out of it. So, I did. The photo on the left is the drawing, which was enlarged from the original, and on the right is the quilt.
This is just so beautiful and wonderful!! It has been magical watching you create this masterpiece quilt from Lillian’s 5 by 7 artwork. My artist friend who is buying this quilt is so very happy to get this and hang it on her studio wall in Houston! Just WOW!!!
Lillian created this abstract art as well as a few others several years ago. This one she titled Rainbow of Emotions and she wrote a story inspired by it (below). We sell prints of her abstract drawings to help fund attendance at a conference every summer that is specific to her chromosome deletion … The Chromosome 18 Family Conference. There’s also a section in Lillian’s book titled, Emotions and Animals, in which she writes a short story about how animals process emotions.
Here’s the story she wrote inspired by the drawing …
A Flower’s Curious Emotions
Once long ago, there lived a flower named Rainbow who was always emotional. One day, the flower was very curious about why she was so emotional.
So the flower went to a wise flower named Emotions but liked to be called Lavender instead. When Rainbow got to Lavender’s home, Rainbow asked, “Why am I so emotional, Lavender?”.
Lavender laughed and said, “You are emotional because you are always inside any living thing but I can give you some wisdom if you think it will help”.
“Yes, I think it will help me better understand. I trust you and your wisdom.”, said Rainbow in excitement. So Lavender said, “The princess who owns the sky is sometimes called Rainbow of Emotions and she watches over you. Your emotions are actually inherited from the princess. I hope that wisdom helps.”
Rainbow said, “Thank you! That helps. Now I am very grateful for the princess’ emotions.” So Rainbow walked off happily. So if you ever see a rainbow or feel any emotion, chances are you could be experiencing either Rainbow’s emotions or the princess’ emotions.
That’s the end of the story.
March 27 2019:
Look what was hand delivered to us today while volunteering at the library. Gerry says this will be one of a kind!!! She had fun creating it; yet, once was enough!
It will be headed to Houston to adorn the studio wall of one of Team TLC’s patrons.
Lillian created the abstract art titled “Rainbow of Emotions”. We met Gerry (the quilt maker) at a book signing in November where we were selling Lillian’s book. Gerry and her partner were our neighbor with their book.
She loved Lillian’s Rainbow of Emotions and commented that she would love to make it into a quilt. I told her I would see if any of our supporters would like to purchase such a beauty. One of our patrons was totally on it and wanted it to hang on her studio wall in Houston! Mounted prints of the artwork is for sale also!
March 29 2019:
Took pictures of this beauty in the natural light before she began her trip to Houston! We’re deeply grateful to our patron in Houston who supported two local artists with this purchase; Lillian and Gerry, the quilter, who made this magical creation from Lillian’s abstract art piece titled, Rainbow of Emotions (last picture). It will hang in her private studio … but may soon decorate the wall of a boutique. We shall see!! 🙏💙💙💙🙏
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