Tag Archives: chromosome 18 deletion

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!

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.

Where Would You Fly – Coming Soon as an Ebook

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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

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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

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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.

Book Signing for Lillian Darnell at Barnes & Noble

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November 28 2019

Haven’t had time to post this! Lillian Darnell will be at Barnes & Noble this Saturday, the 30th, from 2-4:30, signing her books! It’s a “Local Author Event” all weekend!

I’ll be there in January with my latest book, Words of Alchemy. It got delayed with this wild moving mess! Nearly there with it though! Come by and see Lillian and encourage Barnes & Noble to keep having these events to support authors!! Thank you everyone … for the love and support!!

November 30 2019:

I’m handing out free hugs. Lillian Darnell is handing out free smiles. Come by, pick up an autographed book with a personal message, and support local authors. Today from 2-4:30 at the Reno Barnes & Noble. 💜💜💜

November 30 2019:

She had a good time signing books! Frank and Robert and Samantha came by too. And a photo of a deeply and extremely exhausted me. Thank you Barnes & Noble for supporting local authors.

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!