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
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
**THROWBACK POST**
May 4 2009:
Lillian’s 1st day back after track break. Got her school pic from March. Love it & wanted to share!
November 29 2018:
This IS happening! So cool! Rainbow of Emotions by Lillian Darnell being made into a 3X3 handmade quilt! It’s been enlarged and this Psychedelic Dachshund is what it will look like when complete! Thank you to the beautiful soul whose wall this will be adorning! 🙏🙏🙏💚💚💚
Would you like a Quilted 3 X 3 Psychedelic Rainbow of Emotions? Comment here or email to Camilla Downs @ gmail . com …
November 17 2018:
She took a shower last night! At 17 years old, she finally leaned into her worries and fears of taking a shower. Yes! A wonderful and new first for Lillian with a bit of help from grandma Patty!
(Photo from September 2016 – Another first of “getting air” for a photo)
Thank goodness that in The Romano Duo’s new place, they’ve got one of those extra large walk in showers. Lots of room to stay away from the wrath of the shower head! HA! YAY Lillian!!
Shared with Lillian’s permission. 🎉🤩😍🎉
November 10 2018:
Where Would You Fly flew to Barnes & Noble!! 💙🧚🏼♂️ 🧚🏼♂️ 💚 And Lillian and I joined the fun! 💙🧚🏼♂️🧚🏼♂️💚
Want your own copy of “Where Would You Fly”? Go here! xoxo
September 30 2018:
Friends with special needs adult children … Lillian is 17 years old now and it’s time to decide about guardianship. I’ll need to decide whether to do a full guardianship, or just financial, or just medical or both or alternatives.
**Nevada friends have shared about Supported Decision making – About to educate myself on that!!** So … input on any and all routes friends have gone is welcome! Lillian is capable of making decisions. Although, she has a difficult time with some decisions; with much anxiety.
Would you mind sharing your thoughts and experiences with this? I’m interested in hearing from all, especially friends in the state of Nevada since state laws can be different.
Did you have your local Regional Center (state organization that provides services for special needs kids) to assist with this by giving you information and/or conducting a psychological evaluation?
Thank you so very much for your input!! xoxo
Lillian is not medically fragile and we hardly ever go to the doctor. She hasn’t been in years. Her difficulties are her ability to articulate her speech, and emotional and mental issues. She does have difficulty making some decisions. She almost always ask for my input; which I give to her. She still has some difficulties after that, yet, I usually will try a bit more to get her to make the decision. If she’s not able to do it, I’ll make the decision for her (which, sometimes will snap her into being firm with her own decision)!
**THROWBACK POST**
October 23 2013:
A little something Lillian wrote yesterday in OT … Many of you know of Lillian’s obsession with the weather. She watches the accuweather videos every night before bed and must tell me the humidity before going to bed. If she forgets she will get up and come to my room to tell me. So this had my eyes wanting to sweat … xoxo
Witch Creation – A myth by Lillian
Once upon a Halloween, a witch was born on October 31, 1899 and she had a pet named Angelic.
When she grew up, she had a witch-daughter that was born on October 30, 2013. Her name was Marcia Angel-weather. When the witch-daughter was 19, the witch learned that she had weather magic instead of Halloween magic that scares people from her clever daughter Marcia. So Ms. Angel put an alarm on her rose so she knew when to change the weather. She’s still out there changing weather and she can be seen in the clouds. They all lived happily ever after.
This story and many other stories, poems, and tales are included in Lillian’s debut book published January 2018! Go here to learn more and get your copy!
September 7 2018:
Lillian is still going to the lodge once a week for independent time. It’s been a year now. Yay!!! She stays anywhere from 1-3 hours.
I stay with her for 10 minutes while she walks on the treadmill working on that heal toe movement. Then she reads, does artwork, and uses her phone.
During the summer she incorporated going to the pool while she’s there. Had the pool all to her self yesterday! Except I crashed her solo pool party for a quick swim too! 💦💙💦
August 26 2018:
Not normally my style of music. yet, Lillian shared this with me as she finds it deeply inspiring. Once I listened to the words; I, too, find it deeply inspiring. Dream, See, Write, Live Your Story … These are the etchings of my heart and listening to this song has awakened those etchings even more … May you enjoy …. xoxo
August 29 2018:
Lillian got to spend the night with The Romano Duo last at GSR!! What a Diva!!! She loved the pool!! Now she’s off shopping for a birthday gift.
