The Most Miraculous Things – Dodgeball for a Cause

Posted on January 6, 2019 by Camilla

December 18 2018:

The most miraculous things happen when we embrace and love it all …

At about 8:00 last night, I received an email that Lillian’s attendance at next year’s Chromosome 18 Conference will be partially funded by a local Reno nonprofit … Hallelujah … Dodgeball for a Cause …

I will soon be sharing information about this wonderful, local, nonprofit and their upcoming once per year fundraiser. They help several families each year.

My heart is bursting and dripping with ooey gooey gratitude from all of the blessings being delivered in this past week.

(Picture from the 2018 Baltimore conference … The Giggling Duo … Macy and Lillian … The Best of Friends … )

Not That It Need Be Long

Posted on January 2, 2019 by Camilla

December 15 2018:

“Not that the story need be long, but it will take a while to make it short.” – Henry David Thoreau … from the book, “Where Would You Fly and Other Magical Stories” by Lillian Darnell …

Would you like a book for yourself or as a gift for someone? Go here … Where Would You Fly Book ….

Another Fear Walked Into – The Shower

Posted on December 6, 2018 by Camilla

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. 🎉🤩😍🎉

Fairy Dust is in the Air – Get All Three Team TLC Books

Posted on November 12, 2018 by Camilla

November 5 2018:

Fairies and Photography and Acceptance to Zig Zag!!! Sounds like a great trio to me! Lillian’s waving the sparkly, mystic filled wand over them!!

There’s fairy dust in the air for the months of November and December as you can get all three for a magical amount! Let me know …

All three books for $40 + $5 shipping for a total of $45 (regularly $55 for all three).

10% off any one book + $3 shipping

$13.50 for D iz for Different – One Woman’s Journey to Acceptance – $16.50 total with shipping

$18.00 for Biggest Little Photographer – $21 total with shipping

$13.50 for Where Would You Fly and Other Magical Stories – $16.50 total with shipping

You can use this PayPal link. Just enter your amount and note which book(s) you would like and your mailing address.

You can also comment here with your email address if you’d like a different payment method.

Decisions As We Approach Lillian Darnell Reaching 18 Years of Age – Nevada

Posted on November 3, 2018 by Camilla

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)!

Where Would You Fly at Reno Barnes & Noble

Posted on October 23, 2018 by Camilla

October 19 2018:

On Saturday, Nov 10th, Lillian and I will be at the Reno Barnes & Noble for a “Where Would You Fly” book signing from 11-5. We’d love to see you there!! xoxo

Lillian and Independent Time

Posted on October 13, 2018 by Camilla

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! 💦💙💦

Dream and See and Write and Live and Pool and Birthday Gift

Posted on October 8, 2018 by Camilla

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.

Updated Pin Map – Where Would You Fly

Posted on September 7, 2018 by Camilla

July 17 2018:

Oceans of gratitude to the 14 blessings that were bestowed upon us at the Chromosome 18 conference … By way of getting their hands on a copy of “Where Would You Fly”!

I’ve just updated the map and added more pins to the east coast and Canada! Just showing the rest of the map for those who didn’t get to see it yet! xoxo

Ringoes, NJ; Evans City, PA; Halifax, NS, Canada; Toronto, ON, Canada (2); Jim Thorpe, PA; Newport News, VA; Warrington, PA; Elliot City, MD; Oakville, ON, Canada; Lanham, MD; and Plainfield, IL

Most Fun Day Dreams Come True

Posted on August 25, 2018 by Camilla

July 8 2018:

“I have been trying to make some of my most fun day dreams come true. Some of my daydreams slowly are coming true on their own. 😉

Have you tried making some of your daydreams come true?” -Lillian Darnell, July 6, 2018

(Photo from Lillian’s segment discussing her book on KOLO 8 with Sarah Johns in February 2018)

To learn more about Lillian’s book, go here https:///www.WhereWouldYouFly.com … xoxo

Team TLC = Thomas, Lillian and Camilla

Tag Archives: chromosome 18 deletion