Chromosome 18 Registry Family Conference 2017 – Naperville, Illinois

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

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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!

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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!!

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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.

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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 ….

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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

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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.

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Making “music” after lunch. (Thanks Kerry Connelly for taking this one.)

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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 …

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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!!

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July 15 2017:

“This is why we come to the Chromosome 18 Conference!” – Wendy Waugh

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Lillian and Chris having a great conversation!

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Lillian Darnell did an amazing job interviewing with Chris of Special Books by Special Kids!!!!! You go Lillian!!!

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Happy, happy, joy, joy …. xoxo …..

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Picture of 18p- group …. xoxoxoxo

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Farewell Dinner and Dance

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July 16 2017

One more with Mr. Chris last night and a farewell photo with Mary Borucki. Wonderful people! Blessed and grateful!! xoxo

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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!!

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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

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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 …

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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

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