July 25 2020
Team TLC Movie Night: Lillian’s choice – “Flubber”
Lillian says, “Good, 100% recommend, good laugh out loud movie, favorite characters are Sarah and the Professor.”
I say, “Well. I’m more fond of the original, The Absent Minded Professor. But, I sure love Robin Williams. And, miss him.”
Thomas says, “It was good.”
July 21 2020
A lovely walk early this morning. Soul food.
July 23 2020
Sunrise walk this morning. Fire in the Virginia Foothills this morning. It was contained in a new construction area, but seemed to take a while to get fully out. They were still working on it, when I got home from the grocery store at 10:00.
July 24 2020
Early morning walk. Love this lil fuzzy ornamental grass.
July 25 2020
Sunset last night.
July 14 2020
Look what arrived! This completes setting up the ABLE account!!! Lillian now has her first debit card in her name!! Done! YAY!! Now. Time for a look at my estate planning and creating a Special Needs Trust.
July 25 2020
I’m so excited! They finally installed a wall switch to control the fan, instead of the remote control. (Too many folks on the same frequency. Which meant the light and fan speed would change randomly.) I was able to sleep with the fan on last night. Plus, complete control over the speed of the fan and the light. Woohahaha!! Yay!! Bonus: Now we have a dimmer option and an extra fan setting.
Oh, and I got distracted for about 15 minutes taking fan photos. Yep, I’m like that.
July 24 2020
Extra movie night for me – “BlacKkKlansman”
I mean, freaking hilarious that Ron Stalworth pulled off what he did.
Yet, mind blowing and infuriating this Duke and his ilk.
July 21 2020
Walk with Lillian last night. We’ll have to take this again in daylight. She and I have been taking our walks together after dinner once it’s cooled down.
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Just back from the library. It’s been a little over a month that we’ve been able to pick up books from the drive-through window at the library. Thankfully, the line has gotten shorter, the wait not as long. The first time it took an hour.
We sure do miss our volunteer time. We used to be here every Wednesday afternoon shelving books and pulling holds. Last I heard, volunteers would not be returning until January 2021. We miss the library and especially the folks at South Valleys Library. However …. YAY for library books!!
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Lillian looked outside and said the sun was shining orange. I’ve lived here long enough to know what that means. Fire about 4 miles from us in one direction. Dark cloud in the other direction, bringing about 5 minutes of heavy rain. More rain please!! Seems to be small. Confident they’re getting it under control.
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Sunset walk with Lillian. Took some photos before it got too dark. Great walk!
July 24 2020
Another wonderful sunset walk with Lilian yesterday. Not a fan of all the lighting, but sometimes it looks cool.
July 24 2020
Bought myself a bouquet of colorful flowers.
July 22 2020
A socially distanced Sibshop for Thomas this morning. Beautiful park and location with great trees. I may have accidentally picked cherries from the cherry tree. Thanks for the extra mask for Thomas, and thank you to the person who made the masks! Team TLC colors!
July 13 2020
Much thanks to James for having me on the JQM Literary Spotlight today! We’re chattin’ about an outrageously determined, trailblazing, heartfelt, warrior woman and how I became an accidental poet. Join us …
JQM LITERARY SPOTLIGHT PRESENTS Words of Alchemy by Camilla Downs
**THROWBACK POST**
December 6 2014:
Thomas really got to infect people today …. With his smile. He got to be in the Sparks Hometown Parade with his High Desert Montessori buddies. They handed out candy and $1 off coupons for Kids on Big Rigs which is a fun event for kids in April that’s also a fundraiser for HDMS. Thanks Stacey Perez for putting this all together!
**August 2020 Note – Thomas attended High Desert Montessori school from 1st – 4th grade. It was the perfect fit, the perfect situation, the perfect school for him. We LOVED our time there!! From fifth grade on he has been homeschooled. He’s now in the 9th grade.
July 18 2020
Team TLC Movie Night – Thomas’s choice: “Endgame” –
Ending where we began just over a year ago. For one of our date days we went to see this when it debuted at theaters.
After that, I surprised Thomas on his next movie night with announcing we’d watch them all from the beginning. Took just over a year. It has been the most wonderful experience with him. I have loved every minute, and am sad we’re done now.
Thomas says, “It was good and I liked watching them all from the beginning.”
I say, “Loved this one. Loved them all. Freaking amazing cast for the entire series. And the music!! The folks choosing the music completely nailed it.”
Lillian sat this one out. Not her style.
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!
