Another Fear Walked Into – The Shower

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. 🎉🤩😍🎉

Where Would You Fly Flew to Barnes & Noble in Reno Nevada

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

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

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)!

Witch Creation by Lillian Darnell

**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.

Witch Creation by Lillian 10.23.13

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!

Where Would You Fly Updated Cover 9.2017

Lillian and Independent Time

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

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.

Macy in the Sky with Rainbows by Lillian Darnell

July 10 2018:

Somewhere in the vast blue sky between Baltimore and Vegas; Lillian showed me something she had typed in her phone.

After I read it, a lump formed in my throat as sweat pooled in my eyes … Once I was able to speak, I suggested she expand it and create a story. I could tell it meant so very much to her and that this came straight from her heart. May this touch your heart and shine of the love of friendship and the love of nature.

With permission, here’s what she wrote: “Sometimes I hope Macy will travel on an airplane one day in the future so Macy could see how beautiful the sky is in the air. Maybe she could be able to see a circular rainbow or better yet a spectacular sunset, sunrise, or both if that day comes (I hope it does … )”

Here’s the story; which she wrote right then and there during the flight:

Hey, everyone! I wrote this story on July 5th inspired by a daydream I had for a year. The character’s name is based on Macy Miller (a close 18p- friend of mine). I hope you enjoy!

Once long ago, there lived a young girl named Macy Helens who was afraid to fly on an airplane. One day though, her parents who were named Hannah and William announced that they were going on a family vacation but they needed to take an airplane to their destination.

Hannah had made a smart decision to use this vacation to help Macy get over her fears of flying. So Macy was scared but she knew she had to overcome her fears eventually. So Macy agreed to go. They left the next morning.

First, they went through TFA (The Fairy Association which is similar to TSA) and Macy wasn’t even scared but she was proud of herself. Macy handled the searching for a gate number, waiting, and the walking quite easily. The hardest thing was getting on the plane but she told herself not to look down.

It worked perfectly. Once they were about to take off, Macy was afraid of the steep incline that what she did was look out the window for familiar sights. Macy saw circular rainbows, a beautiful sunset, and a gorgeous sunrise as well. She was very impressed. Finally, their flight landed and Macy was very happy and proud.

She Did It! The 2018 Chromosome Conference – Baltimore Maryland

Lillian faced many fears and had many firsts this year at conference. Each year, each conference she makes wonderful progress! Go Lillian Go!!

Not to mention a FIRST of selling and autographing her first published book!! Wahooo!!

Chromosome 18 Conference 2018 Baltimore Maryland 7.1.18 #60 Lillian signing books

July 2 2018:

Lillian just went out to eat with a group of friends. Alone. Like. Without me. FIRST TIME she has joined the self advocates doing anything! YES!!! Hallelujah!!

She typed her order in her phone before leaving so she can show it to the host. I put money in her name badge and texted her instructions for paying her bill after explaining verbally how to pay.

She’s worried. And keeps texting me. Yet, at least she finally took that first step! The hardest one! Wahoo!!

Lillian and Camilla May 2018 Date Day 5.22.18 #9

(This post received 242 likes/loves/wows and 142 comments on facebook. Deep gratitude for everyone cheering for Lillian!)

And the below post announcing the success received 121 likes/loves and 31 comments! Thank you everyone!

Chromosome 18 Conference 2018 Baltimore Maryland 7.2.18 #84

July 3 2018:

Here’s another first!! Lillian has never participated in the self advocate panel!!! Listening. A first step!! Wahooo!!!!

Chromosome 18 Conference 2018 Baltimore Maryland 7.3.18 #85 Lillian text about self advocate panel

July 6 2018:

Fear of escalators: We’ve always had to use the stairs or elevator when Lillian was with us in the past.

No longer! Lillian rode the escalator on Friday, the 29th, at the Reno-Tahoe Airport! She held tight to me and was worried. Yet, she did it! The ultimate goal is to ride the escalator without me beside her. Wahoooooo!!!!xoxo

Lillian Rode the Escalator Post 7.6.18

July 7 2018:

Another fear bites the dust. In the past Lillian has chosen to walk throughout the airport attached to my arm. Not the easiest for me while pulling a carry on bag plus her bag.

When we got to the airport in Baltimore readying to leave, I explained I needed her not to hold onto my arm and to just walk beside me.

After sighing, she said “Okay”. And did just that. Throughout the entire Baltimore, Vegas, and Reno airport!

PLUS! This included the HUGEST fear at the airport ….. The PBB. She walked through the passenger boarding bridge NOT attached to me!!! She stepped from the PBB into the airplane NOT attached to me AND walked the aisle of the airplane NOT attached to me!

Hallelujah!! Ahhhhhhh …. Freedom for both of us!!! (Picture from 2016 – Another first! First time catching air for a photo!)

Damonte Ranch Walk 9.13.16 #4

July 8 2018:

Okay. Here’s the last one …. For this time around … Thank you to everyone for celebrating in our joy of laying to rest some fears and for having many firsts!!

While in the airports on the way back home, Lillian went into the airport restrooms without me!! We went from the first traveling experiences all those years ago of having to travel with post it notes to cover up the automatic flush sensor, to going in alone!! Yes, Yes, Yes!!!

Much gratitude to our friends and family for celebrating these seemingly small, yet HUGE, accomplishments at 16 years old for Lillian!! Wahoooo!!!

Lillian South Valleys Library 9.13.17

Most Fun Day Dreams Come True

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)

Lillian and Camilla Kolo 8 Where Would You Fly Book 2.27.18 #5

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

Best Friends – Together Again – 2018 Chromosome 18 Conference in Baltimore

July 1 2018:

Best friends! Together again! Macy Miller and Lillian. Someone asked if they are twins! They both love to laugh and giggle!

Chromosome 18 Conference 2018 Baltimore Maryland 7.1.18 #71 Macy and Lillian

Chromosome 18 Conference 2018 Baltimore Maryland 7.1.18 #81 Macy and Lillian

July 1 2018:

We had dinner with The Miller’s and just look at these two lovelies! The Giggle Duo, indeed! Look how happy they are! Lillian and Macy = Happy to see one another after a year apart!

July 3 2018:

Chromosome 18 Conference 2018 Baltimore Maryland 7.3.18 #88 Camilla Ladies Night and Macy and Lillian

July 4 2018:

Chromosome 18 Conference 2018 Baltimore Maryland 7.4.18 #111 Farewell Dinner & Dance

Chromosome 18 Conference 2018 Baltimore Maryland 7.4.18 #95 Farewell Dinner & Dance

Chromosome 18 Conference 2018 Baltimore Maryland 7.4.18 #115 Farewell Dinner & Dance