No Longer a Valet While Watching Like a Hawk

August 13 2020

Another ‘to-do’ checked off during the two week break. Ordered and installed a new interior passenger door handle. After nearly a year, I no longer have to be a valet for Thomas! 🤣 Many times I forgot he couldn’t open the door, walking off and wondering why he wasn’t getting out of the car. He was not amused!

August 13 2020

It is time. I’ve got to get over my fear of what could potentially happen. Lillian needs foods chopped into small pieces or she will choke. The carrots and fruit were the last bit of her lunch making to take over for herself. Pray for me. Ha! This may do me in. Seriously, though, she is doing a fabulous job at keeping her fingertips and thumb out of the way.

PS … My comment is mostly tongue in cheek. I’ve taught and modeled the hold positions and watch her like a hawk when she’s cutting. A friend suggested having her watch some videos modeling technique, and think I’ll find some Youtube videos for her to watch too.

She’s doing a really good job with the form. She just doesn’t have much strength in her hands. So, carrots are a bit of a challenge.

2020 Chromosome 18 Virtual Conference

July 13 2020

The Chromosome 18 Annual Family Conference that happens every summer got postponed this year. We would have been in San Antonio last week for it.

However, they put together a virtual conference with one live session every day this week. Plus, a live virtual dance party on Saturday!

My head is spinning after this session. Incredibly grateful for the abundance of information from Benji!

July 14 2020

Today it was the self-advocate (Club 18) Panel

Two amazing hours hanging with the self-advocates. Getting to hear them answer questions about living on their own (or not), driving (or not), how things have changed for them due to Covid-19, their jobs, and their lifestyle. So wonderful!

The Chromosome 18 Annual Family Conference that happens every summer got postponed this year. We would have been in San Antonio last week for it.

However, they put together a virtual conference with one live session every day this week. Plus, a live virtual dance party on Saturday!

July 15 2020

Another great one for planning purposes. Overlapped a tiny bit with Monday’s session (in a good way), but covered many different topics. Worth it to watch the recording.

The Chromosome 18 Annual Family Conference that happens every summer got postponed this year. We would have been in San Antonio last week for it.

However, they put together a virtual conference with one live session every day this week. Plus, a live virtual dance party on Saturday!

July 16 2020

Today was the Sibling Panel!

Thank you so very much to all the siblings. It’s wonderful and enlightening to hear your perspective. Huge thank you to Thomas for your honesty, and balancing out the panel as someone who doesn’t have a shining relationship with their sib. I AM incredibly proud of you!!!!

July 18 2020

Blurry photo, oops! Last session of the online conference. Look at all the beautiful faces Neale Parker has as his background. Looking forward to the dance party at 5:00 PST. 🍀💐🍀

The Chromosome 18 Annual Family Conference that happens every summer got postponed this year. We would have been in San Antonio last week for it.

However, they put together a virtual conference with one live session every day this week. Plus, a live virtual dance party on Saturday!

July 18 2020

The finale of the annual Chromosome 18 Family Conference. A fabulous dance party! Chromosome 18 Registry & Research Society

Oh my gosh!!! That was so freaking fun!! It was amazing to see so many C18 faces!! YaY!!! WE ARE FAMILY!! 💃🌸🌸🌸💃 I was cooking dinner and dancing! Ha!

The Chromosome 18 Annual Family Conference that happens every summer got postponed this year. We would have been in San Antonio last week for it.

However, they put together a virtual conference with one live session every day this week. Plus, a live virtual dance party to end the conference!

Throwback Post: Weather Fairy Lillian

**THROWBACK POST**

December 6 2010:

Just received my weather report for today from Weather Fairy Lillian …

Fog Alert … Complete with instructions on how to drive in the fog and to allow extra time when traveling …

Thank YOU Team Member L!!! Seriously y’all!! She has it set up so she receives weather alerts. I hear her darn phone going off at all hours with those alerts!!

**July 2020 Update** – Lillian is still obsessed with the weather. Still shares the weather report with me nearly every day, for the next month.

Where Would You Fly – Coming Soon as an Ebook

April 4 2020

Exciting news!! Lillian Darnell’s book, Where Would You Fly, is being converted to an ebook. Finally!! We’ll let everyone know when it’s finished. We’ll have a special for free or low cost, and perhaps maybe a mini-launch. This opens it up to a much wider audience. YAY!!

Only One Item Left

April 3 2020:

Another one checked off the list! New bank account set up for Lillian’s SSI! Finished at 5:56 pm today. The entire process has taken about a month, to month and a half, due to needing paperwork from SS.

This last part has taken about a week and a half as we did it through email, text, phone, and DocuSign. Yet, it’s done!! Only one item left now for the Lillian-Turned-18-Paperwork-And-To-Do-List-Palooza … Creating an ABLE account.

Overflowing With Gratitude – Loving Kindness in Action Followed by Quaking and Rolling

March 20 2020

Overflowing with gratitude for a beautiful human who made a grocery store run for us. I went grocery shopping last week BEFORE the craziness began, and it was just a regular weekly trip. So, we were running out of things.

Except for walks, we’ve not left the house since Saturday. Lillian has a weak immune system so best to stay home. Incredibly grateful for your kindness, Constance Aguilar!!! Team TLC thanks you!!!

And … how about an earthquake to go along with dinner tonight? Sure …

It was big for this area (5.0), but, I don’t think there was damage anywhere. It’s just the most unsettling feeling. It always takes me a bit to get my equilibrium settled. Lillian felt it the most, Thomas didn’t feel a dam* thing (HA!), and I felt it, but what got my attention was the loud noise the 3 big windows in the living room made! Hugs to you!! xoxo

March 27 2020

Thank you Toilet Paper Faeries!! Who knew there were faeries for TP? Well, there are and we are grateful to all of you. We’re also good with toilet paper now. Deeply grateful and incredibly blessed by your thoughtfulness and kindness. 🙏♥️♥️♥️🙏 A photo of the sky as I chatted with the faeries.

**Update April 4, 2020: We’ve had another trip to Trader Joe’s by different friend, in addition to using Insta Cart. We are incredibly thankful and deeply blessed.

Lisa and the Huge Storm by Lillian Darnell

March 17 2020

New story from Lillian …

Once many years ago, there lived a girl whose name was Lisa. Lisa lived with her parents in a huge castle. Her parents were Leah and Andy. Lisa loved having fun. They lived happily in the castle.

But one day, a huge ….

https://lilliandarnell.com/2020/03/09/lisa-and-the-huge-storm/?fbclid=IwAR1HYEa1YyQtE4INbjx7yMfFJB0odhESCa09T0XLPH9aEGWcfQTs3QRq7RE

Can We Be Done Now

March 9 2020

Can we be done now? Just back from having the POA for health decisions notarized. Just two items remaining. New bank account for SSI and then an ABLE account. Yay!!! Done!!!

Next up, after a rest from paperwork, …. trust(s) and adjusting my life insurance. So much paperwork, so many details.

A Lovely and Magical Book – Curled Up With a Good Book – Where Would You Fly

March 6 2020

Thank you to Michelle of Curled Up With a Good Book for the lovely review of Lillian’s book … We are deeply grateful!! xoxo

“This is a lovely and magical book, full of wonderful short stories where you can let your imagination drift and enter the unique world of Lillian. A collection of stories and poems written by Lillian throughout her life, will transport you to new enchanted and magical worlds, full of colour, rainbows and happy endings. The photos and drawings of Lillian are an added beautiful touch.

Personally my favourite bit about this book was the section on Emotions and Feelings. Camilla (Lillian’s Mum) explains at the beginning of the book that this section was born from them working together to understand and process emotions and from that, Lillian produced “Emotions with Animals”. There is a lot both children and adults alike can learn from this section and it really resonated with me, and how I try to live my life. Each mini story talks about a different animal and emotion, for example ‘Calm Monarch Butterflies’ and then there is Lillian’s summary of ‘How To’ (e.g How To Be Calm). There is some fantastic advice in this, and every single one of us could learn something!

Throughout the book there is a mix of short stories (fairies & princesses, legends, tales & adventures), poems and songs – each with their own unique tale to tell. This book is adorable and inspirational, and if nothing else will make you smile. We all love a wonderful and happy story, and Lillian certainly delivers this along with plenty of inspiration and a touch of magic ….”

Book Review: Where Would You Fly? & Other Magical Stories by Lillian Darnell