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 ….