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

Biggest Little Photographer Books to 2017 Conference 7.10.17

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

Unpacking So We Can Start Packing

July 17 2017:

Unpacking the suitcase today. For tomorrow, it’s the start of packing to move.

I know not where we’re headed, yet, I have faith and knowing that come August 19th, I will know and it will be crystal clear … Surrendering and saying “Yes” to Life with a heart full of gratitude and love …

Let me know if you know anyone needing a solid wood queen size sleigh bed frame as this was it’s last stop with me. Time to let it go and allow myself more freedom from stuff … xoxo

Letting go of personal preferences and what I think and thought I wanted so that Life gives me the opportunities to say “Yes” to what my Heart and the Divine already know … Gives let it go a whole new meaning …

One moment in trust and surrender …. one moment not. Praying for more of the first. Tomorrow, July 19th, is the day I need to turn in our 30 day notice. Will definitely need strength, peace, and knowing that all is well.

**Update on 8.3.17** – I did turn in our 30 Day Notice and we move on the 18th or 19th of August. As of right now I don’t know where we will be moving. I will share as I know.

The One Lesson I Prioritize

July 7 2017:

This has been Thomas’ first year of homeschooling and Lillian’s third or fourth year. The style of schooling we follow is more like unschooling, interest based, or child-led learning. It’s definitely not traditional homeschooling. Over the past several months I’ve had a couple of friends ask how homeschooling is going. Without any thought, I answered through my heart with this, “We are learning how to be kind humans and how to have healthy relationships.” [ 651 more words ]

The One Thing We Should Be Teaching

 

Help Us Choose the Cover for Lillian Darnell’s Debut Book

July 3 2017

Help us choose!! Which one for the cover of Lillian’s debut book? React to whichever is your choice and if you have time, please let us know the “why” for your choice.

“Where Would You Fly
and Other Magickal Stories”

This book is a collection of tales, stories, and poems Lillian Darnell has written over the years about fairies, princesses, food, and much more.

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Help Team TLC With Attending the 2017 Chromosome 18 Family Conference

C18 Trip July 2016 #17

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:

  1. Lillian’s debut book, Where Would You Fly and Other Magickal Stories, debuting by October 2017. Pre-order here … http://lilliandarnell.com/author/
  2. Thomas’ book, Biggest Little Photographer, published in October 2016. Order here …. http://BiggestLittlePhotographer.com
  3. Camilla’s book, D iz for Different – One Woman’s Journey to Acceptance, published in March 2012. Order here …. http://camilladowns.com/books/
  4. Skeleton key wind chime designed by Thomas and created by Camilla ($25 – includes shipping) … **SOLD** Picture here … https://www.facebook.com/photo.php?fbid=10155549637116584&set=a.52927246583.79053.681171583&type=3&theater
  5. Print or digital download of Lillian’s Egyptian Eye or Rainbow of Emotions abstract art …. View and order here … http://lilliandarnell.com/lillians-art/
  6. Hand made notebook by Lillian … Order here … http://lilliandarnell.com/lillians-art/
  7. Custom poem for you or a loved one (by Camilla) … email Camilla at Camilla Downs @ gmail . com ….
  8. Queen size solid wood sleigh bed frame … Make an offer … Picture here … https://www.facebook.com/photo.php?fbid=10155404014936584&set=pb.681171583.-2207520000.1499540619.&type=3&theater
  9. If you are a business owner and want to sponsor us, I’m happy to wear promotional items, get a temporary tattoo, write a blog post, etc. …. email Camilla at Camilla Downs @ gmail . com …
  10. Just want to donate …. Go here … https://www.paypal.me/camilladowns
  11. Prayers, blessings, and good juju!!

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

C18 Trip July 2016 #77
(Team TLC with our friends from Australia!! xoxoxo)

Success – Wild Child Nature Session – Notice Nature

June 8 2017:

So grateful to Dorota and her two amazing kids for braving the crazy heavy winds to attend Wild Child Nature Sessions – Notice Nature this morning.

We had a beautiful time together. I’m blessed that this session held a space of peace and connection during a busy time for Dorota’s family.

And, that something I shared will be helpful for her daughter before dance performance next week. Overflowing with gratitude. Here we are after spending an hour in the strong winds. xoxo

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How Do You Let Your True Colors Shine

May 29 2017:

Fear ~~ Control ~~ Manipulation ~~ Conditional Love ~~ Smallness ~~ Victim These six have been my friends throughout this life. I unconsciously believed they were my protectors, my power, and what allowed me to live this life as I thought I wanted to experience it. In December 2016, I had an intuitive knowing that the year 2017 would bring with it a… [ 532 more words ]

One Way I Surrendered To My True Colors

Coming Soon! Lillian Darnell’s Debut Book – Where Would You Fly

May 27 2017:

This is finally happening! Coming Soon! “Where Would You Fly and Other Magickal Stories” by Lillian Darnell ….

Where Would You Fly Cover #1 6.11.17

This book is a collection of tales, stories, and poems I have written over the years about fairies, princesses, food, and much more. YAY!! xoxoxo

Pre-order yours now by going here!

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