July 25 2017:
Lillian and Camilla July 2017 Date Day – Lunch at the park. Had the park all to ourselves. Pretty cool that it rained while we ate at the covered tables and stopped about the time we finished. Next up, throwing the frisbee.
Then to pick up dessert, head home, and enjoy it at the lodge. Birthday bar for Lillian and vegan chocolate chip and ginger snap cookie for me.
Finishing our date with a sunset walk.
**THROWBACK POST**
April 23, 2013
This young lady right here, the one holding the Sun ….
In my “Compliment” note tonight she wrote, “I like your courage to not give up.” WOW! Both of these little people in my life are so full of wisdom and are so intuitive …. They are part of my purpose and I part of their purpose … We are a Team indeed.
I’ve been sick with some kinda crud since last Thursday and these two have been awesome … Made my eyes sweat ….
July 10 2017:
Picked up a load of Biggest Little Photographer books this morning! He gets to fly to Chicago tomorrow. No luggage for you Biggest Little Photographer. You are your own luggage! xoxoxo
July 11 2017:
We made it! Early morning flight. We got to see the sun rise. Now just waiting for our room. Great flight. Great ride here.
Thank you Stacey Perez for having Lovey over for a vacation at The Perez Casa. And thank you times a million for picking up Rosey from the airport. It was great to be able to drive our own car this morning!
July 11 2017:
Spinach salad with red and green peppers, red onions, mushrooms, and roasted potatoes …. with a honey mustard dressing. Thomas and Lillian had more traditional pub items. Yet, so happy and grateful this was on the menu for me!!
July 12 2017:
They communicate nearly daily. One lives in Reno, Nevada and one lives in Kentucky. I got the countdown all day as to when she would arrive this afternoon in Naperville.
Finally!! They get to be together face to face!! I think Macy Miller and Lillian Darnell are kinda happy.
July 13 2017:
He waits all year to be a crazy kid with his sibling friends. Here they are off to a sibling outing. This makes my eyes pool with sweat. Love ….
Looks kind of messy in this picture, yet it was soooooo amazing!!!! Incredibly yummy bruschetta I had for dinner last night at a local place that donated 15% from the evening to The Chromosome 18 Registry. Thank you Bricks Wood Fired Pizza!! Thomas and Lillian loved their dinner too! xoxo
July 14 2017:
Swimming with friends for Thomas. And I got to meet Kunali! He was laser focused on where his dad went. I adore his ears. So cute! Then there was sitting on the couch and chatting and being silly with friends.
Making “music” after lunch. (Thanks Kerry Connelly for taking this one.)
Wee little walk around the hotel yesterday with Lillian. Beautiful flowers and a cool accidental photo. Plus, a flowers view of the hotel. Yay!! Fresh air and bits of nature. xoxoxo …
****************************
Favorite Chromosome 18 Conference comment so far: “I don’t think I can answer anymore questions Kati.” -Matt Miller (Debra Anne Kovacs) xoxo …. Love Ms. Kati!!
****************************
July 15 2017:
“This is why we come to the Chromosome 18 Conference!” – Wendy Waugh
Lillian and Chris having a great conversation!
Lillian Darnell did an amazing job interviewing with Chris of Special Books by Special Kids!!!!! You go Lillian!!!
Happy, happy, joy, joy …. xoxo …..
Picture of 18p- group …. xoxoxoxo
Farewell Dinner and Dance
July 16 2017
One more with Mr. Chris last night and a farewell photo with Mary Borucki. Wonderful people! Blessed and grateful!! xoxo
July 16 2017:
Wish we’d had more time to explore the Naperville Riverwalk. So incredibly beautiful. Only got one hour there before we had to make our way to the airport. The music from the carillon is indescribably amazing. Would love to have toured it! And that’s one wide tree! If I had known it was so peaceful and soothing, I may have been MIA from the conference. Oh my gosh!!
This one called for its own post …. “What We Need” ….
This spoke to me deeply. Time disappeared, all else faded. It was only these words, nature, and me. Be still. And know. xoxoxo
July 17 2017:
Approaching the Reno Tahoe airport last night in first picture. Somewhere over Utah or Nevada in the other pictures. Nature and love are incredibly beautiful and good for us. xoxo …
July 17 2017:
Just picked up Lovey, the guinea pig, from The Perez Resort (ran by Stacey, Eric, and Mason Perez). They are so good to her and Team TLC.
They clipped her nails and fed her all kinds of yummy fruits and veggies. She graced them with many great guinea pig sounds for all their efforts!
They picked up Rosey, Team TLC’s car, at the airport last Tuesday so I was able to drive us to the airport at 4:00 am Tuesday morning. They filled up Rosey’s tank; which hasn’t been full in quite a while!! They delivered Rosey back to us at the arrival pick up area last night at Reno-Tahoe airport!!
Thank you Stacey, Eric, and Mason! Y’all are the best and we are so incredibly blessed and grateful for your kindness and love!!! xoxoxoxoxo
July 18 2017:
Most “WOW” conference moment … We traveled nearly 2,000 miles from Reno to Naperville and met a mom and daughter (with trisomy 18p) from Grass Valley, California … about an hour and a half from here. It was their 1st conference! Can’t wait to visit them in Grass Valley! Virginia was born in 1961 and was diagnosed in 2012. xoxo
Best follow up comment to a session at the Chromosome 18 conference:
“The people who created the formulas and rules were drunk.”
Comment courtesy of Thomas after he and I had a discussion about John McGing’s SSI/SSDI/Medicaid/Medicare session. It’s enough to drive one to drinking … Cheers! …. xoxo
July 19 2017:
Fifteen Biggest Little Photographer books travelled by backpack to Naperville with us. Only three came back.
Oceans and oceans of gratitude to everyone for their support, and to Thomas and Biggest Little Photographer for being the Way for Team TLC to eat while we were there!
YAY for food! YAY for inspiring creations! xoxo
We need your help! Last minute fund raising for Team TLC’s attendance at the 2017 Chromosome 18 Family Conference in Naperville, Illinois from July 12th – July 15th.
Fortunately, we have a sponsor who has loaned us money for our airfare, registration, and hotel stay. And we have a wee bit from Thomas and Lillian fundraising since last year’s conference.
We just need to make sure we have enough for incidentals while there … food, transportation to and from the airport, and the special events lined up for siblings and self advocates.
If you are moved to help, here’s a list of our creations and items for sale:
If you’re wondering why this is such a big deal for Team TLC and why it means so much for us to be there, go here and here.
With tremendous gratitude and blessings,
Thomas, Lillian, and Camilla
xoxoxo
(Team TLC with our friends from Australia!! xoxoxo)
June 21 2017:
Lillian and Camilla June 2017 Date Day: First stop – dessert. Vanilla cake bar for Lillian, cherry pie for me, plus bonus!!!! The store was celebrating its 9th birthday and we got cake too!!!
Second stop was at the post office so Lillian could mail the first sale of her custom hand made notebooks!
Last stop – Home furnishings store to look at all the stuff I’m so glad we don’t own. And to take fun pictures!
May 26 2017:
Lillian and Camilla May 2017 Date Day – Part 1: Going for a walk! xoxo
Part 2: Dessert! Dark chocolate peanut butter cup for me and a tulip cookie for Lillian. Last stop: Virginia Foothills Park for relaxing and reading.
May 25 2017:
The pool is open!!! Yay!!! Happy Thomas and Lillian! xoxo
May 26 2017:
Today is day 12 of the 21 Day Dancing Freedom Challenge. This is a wonderful, inspiring, awakening, and alchemizing experience.
First four days were Earth, next four Water, and today we finished Fire … which included alchemy. Next up is Air and then Ether.
I know this way isn’t the way for everyone. Yet, I feel each person has their own unique style of releasing, connecting, surrendering, accepting, and allowing.
One lesson I continue to learn throughout this journey is to listen to internal nudges, hunches, and inspirations. I have ignored the dancing nudge for years …. Listen and KNOW there is a reason. xoxo
Here’s the Dancing Freedom facebook page. They close the challenge group two days after the challenge begins, yet, I’m sure you can sign up for the next one! xoxoxo https://www.facebook.com/DancingFreedom/
May 20 2017:
From Lillian …. (The conference is in Naperville, Illinois this year) …. xoxo
Hey, everyone! Every year around this time, I like to create something to fundraise and help my family attend the annual Chromosome 18 Family conference.
This year I am creating handmade notebooks which can be customized.
Here’s a sample. Let me know if you want one by commenting here or sending an email to my Mom at CamillaDowns @ gmail . com .
She’s already received THREE orders! YAY Lillian!
April 26 2017:
Done! After six years. Lillian began in 2011 with all three therapies: ST, PT, and OT. ST and OT have long been stopped. Today was the last physical therapy appointment. xoxo
Chocolate covered gluten free donuts yesterday in celebration of endings, one more layer of freedom, and feeling the storms of life to allow even more freedom. Cheers! 🎉 xoxo
April 24 2017:
Solo walk this afternoon … At least two messages of love and one amazing carpet of itty bitty cute purple flowers. xoxo
April 25 2017:
Walk with Lillian this afternoon. Shadows, ducklings, egrets, reflections, wind, and sun. Perfect. xoxo
