Tag Archives: Lillian Darnell

2020 Chromosome 18 Virtual Conference

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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!

Lillian and Camilla July 2020 Date Day

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July 9 2020

Lillian and Camilla July 2020 Date Day

Fries and a smiley face sugar cookie for her. Peanut Udon Noodle Salad with a peanut ginger dressing and trail mix cookie for me.

Plus, a lovely walk at Wilbur May Arboretum.

A lovely walk at Wilbur May Arboretum. It’s hard not to take a hundred photos at this beautiful place. Nature held space for us to have some sobering conversations about relationships. Which is why I included the serious face photo. Ha!

Closing with an after sunset walk with more difficult discussions. Nature is the perfect setting for this.

Throwback Post: Weather Fairy Lillian

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**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.

Lillian and Camilla June 2020 Date Day

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June 9 2020

Lillian and Camilla June 2020 Date Day … Part 1

Fries from Ike’s and lemon cheesecake cookie from Whole Foods for Lillian. Fabulous French onion from GreatFull Gardens and Coconut Bliss chocolate walnut brownie “ice cream” for me.

Part 2

A walk in one of our favorite places.

Part 3

A beautiful drive to Audrey Harris Park, stop to take in the beauty, and a wonderful drive back home.

Team TLC + Romano Duo + Robert Christmas 2019

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December 25 2019

Oh my goodness! Thank you Romano Duo!!

Homemade gift I made for Lillian. This was great fun! Using a book that was destined for the trash, I randomly opened the book and scanned for phrases to make into a poem. Challenging! 💙💙💙

Beautiful gifts from Thomas and Lillian. 💚♥️💚♥️💚♥️

Homemade gift I made for Thomas. This was great fun! Using a book that was destined for the trash, I randomly opened the book and scanned for phrases to make into a poem. Challenging! 💜💜💜

I am incredibly blessed.

A good time was had by all. Team TLC + The Romano Duo + Robert

These two stoke the embers of my heart, giving me strength when I wish to be weak. There is no greater gift.

My eyes nearly began sweating when I opened this gift. A magical bird made from recycled material. Beautiful!!

Christmas Eve dinner was a big scoop of the homemade green bean casserole I had just made. Followed by a piece of apple cranberry pie. Christmas dinner was nearly the same, adding a big scoop of my mom’s potato salad. Yum!!! 💚💚💚♥️♥️♥️

Christmas gift from my brother. My eyes got sweaty over this one. And, y’all, I have absolutely no recollection of this, nor of even being this person. I’m smiling though. Always smiling. 😁♥️

Homemade gift I made for Mom and Frank. This was great fun! Using a book that was destined for the trash, I randomly opened the book and scanned for phrases to make into a poem. Challenging! 💙💙💙 🧡🧡🧡 For Robert’s gift I created a larger than life heart flower. 💚💚💚

December 31 2019:

Lillian thinks I made a masterpiece with the candy canes. Ha!! The vases are packed so I grabbed the French press container and added the candy canes. The inside of the French press fell apart, and I was wondering what I would do with the glass. Improvise!! ♥️💚

 

 

Sweaty Hands for Fingerprinting

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November 8 2019:

Another marked off the list. Fingerprinting done. She was so anxious and worried, they had a heck of a time getting her prints because her hands were sweating like crazy. They were incredibly kind and understanding.

She must really like volunteering at the library as that’s the only way I could get her here, by reminding her it’s required once one is 18 years old. She’s heading into her third year volunteering. Hopefully, one day soon she’ll go without me as her sidekick. That’s the plan anyway!

**Update – January 20 2020: It turns out they were so sweaty, that the fingerprints weren’t acceptable. However, they did not request she re-do them, due to her situation and that she’s been volunteering at the library since age 16. She completed a few additional pieces of paperwork and we’re done with this one!