You Should Get These

Today was Team TLC library day. These look like exciting, juicy, intriguing books. Don’t they?

Thomas said, “You should get these.” I replied that reading them may make me crazier than I already am plus drive me to drinking.

So, Thomas checked them out so he could read them and advice me in matters relating to Lillian. Thank you Thomas!! xoxo

Social Security Books August 2017

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!

2017 Chromosome 18 Conference 7.10.17 #2 2017 Chromosome 18 Conference 7.10.17 #3 2017 Chromosome 18 Conference 7.10.17 #4 2017 Chromosome 18 Conference 7.10.17 #5

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!!

2017 Chromosome 18 Conference 7.10.17 #6 2017 Chromosome 18 Conference 7.10.17 #7

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.

2017 Chromosome 18 Conference 7.12.17 #8

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 ….

2017 Chromosome 18 Conference 7.13.17 #9

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

2017 Chromosome 18 Conference 7.13.17 #10

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.

2017 Chromosome 18 Conference 7.14.17 #11 2017 Chromosome 18 Conference 7.14.17 #12 2017 Chromosome 18 Conference 7.14.17 #13

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

2017 Chromosome 18 Conference 7.14.17 #14

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 …

2017 Chromosome 18 Conference 7.14.17 #15 2017 Chromosome 18 Conference 7.14.17 #16 2017 Chromosome 18 Conference 7.14.17 #17 2017 Chromosome 18 Conference 7.14.17 #18 2017 Chromosome 18 Conference 7.14.17 #19 2017 Chromosome 18 Conference 7.14.17 #20 2017 Chromosome 18 Conference 7.14.17 #21

****************************

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!!

****************************

2017 Chromosome 18 Conference 7.14.17 #222017 Chromosome 18 Conference 7.15.17 #36

July 15 2017:

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

2017 Chromosome 18 Conference 7.15.17 #23

2017 Chromosome 18 Conference 7.15.17 #24

Lillian and Chris having a great conversation!

2017 Chromosome 18 Conference 7.15.17 #25

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

2017 Chromosome 18 Conference 7.15.17 #26

Happy, happy, joy, joy …. xoxo …..

2017 Chromosome 18 Conference 7.15.17 #27 2017 Chromosome 18 Conference 7.15.17 #28

Picture of 18p- group …. xoxoxoxo

2017 Chromosome 18 Conference 7.15.17 #31 2017 Chromosome 18 Conference 7.15.17 #32

Farewell Dinner and Dance

2017 Chromosome 18 Conference 7.15.17 #33 2017 Chromosome 18 Conference 7.15.17 #34 2017 Chromosome 18 Conference 7.15.17 #35

2017 Chromosome 18 Conference 7.15.17 #29 2017 Chromosome 18 Conference 7.15.17 #30

July 16 2017

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

2017 Chromosome 18 Conference 7.15.17 #37 2017 Chromosome 18 Conference 7.15.17 #38 2017 Chromosome 18 Conference 7.15.17 #39

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!!

2017 Chromosome 18 Conference 7.16.17 #44 2017 Chromosome 18 Conference 7.16.17 #43 2017 Chromosome 18 Conference 7.16.17 #42 2017 Chromosome 18 Conference 7.16.17 #41 2017 Chromosome 18 Conference 7.16.17 #402017 Chromosome 18 Conference 7.16.17 #452017 Chromosome 18 Conference 7.16.17 #462017 Chromosome 18 Conference 7.16.17 #472017 Chromosome 18 Conference 7.16.17 #482017 Chromosome 18 Conference 7.16.17 #492017 Chromosome 18 Conference 7.16.17 #502017 Chromosome 18 Conference 7.16.17 #512017 Chromosome 18 Conference 7.16.17 #522017 Chromosome 18 Conference 7.16.17 #532017 Chromosome 18 Conference 7.16.17 #542017 Chromosome 18 Conference 7.16.17 #552017 Chromosome 18 Conference 7.16.17 #562017 Chromosome 18 Conference 7.16.17 #572017 Chromosome 18 Conference 7.16.17 #582017 Chromosome 18 Conference 7.16.17 #592017 Chromosome 18 Conference 7.16.17 #602017 Chromosome 18 Conference 7.16.17 #612017 Chromosome 18 Conference 7.16.17 #622017 Chromosome 18 Conference 7.16.17 #63

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

2017 Chromosome 18 Conference 7.16.17 #68

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 …

2017 Chromosome 18 Conference 7.16.17 #64 2017 Chromosome 18 Conference 7.16.17 #65 2017 Chromosome 18 Conference 7.16.17 #66 2017 Chromosome 18 Conference 7.16.17 #67

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

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.

Where Would You Fly Fairy Wings Book Cover 6.28.17 Where Would You Fly Book Cover 6.28.17

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)

She Loved by Camilla Downs

May 18 2017:

It’s the 18th of the month. Chromosome #18 brought into our life family we never knew we had and has blessed us beyond the words to even describe. To a beautiful soul ….

Dragon and Angel Wings and Bird Wings Vintage Lake May 2017

Ever There

She loved.
She shined.
She let go.

Ever there with kind words,
with encouraging words,
with loving suggestions,
and, oh yes, hugs and happy dancing.

A smile that beamed brightly.
Greeting with open arms all who
were new to this different path.

The originator
of the “Different is Good” slogan.
She checked in on one
just when one thought she
was all alone.

She lived life
to the fullest,
coming to embrace this
different path.

Deeply she loved
her family.
Openly and freely
sharing her own
ups and downs.

Dear friends
and family the world over, has she,
who are deeply saddened for her
early departure.

She wanted to help all.
She wanted to cheer us all on.
She wanted to hug us all.

Every eighteenth of every month
my face to the sky I will turn,
to see and feel a warmth from above,
surrounding me with the
help, cheer, and hugs she
longed to provide.

Fly free beautiful soul,
Fly free and help, cheer,
support, hug, happy dance,
and LOVE for an eternity.

I love you, Susan Moran.

Camilla & Susan Savanahh Conference

Hand Made Custom Notebooks by Lillian Darnell

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 .

Lillian's Doodling Notebook May 2017

She’s already received THREE orders! YAY Lillian!

Celebration of an Ending

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

Lillian Done with PT 4.26.17

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

Celebratory Donuts Done with PT for Lilllian 4.26.17

How Camilla Feels About It

**THROWBACK POST**

February 28 2013:

One of our sweet Chromosome 18 friends is doing a research project on Chromosome 18 affected individuals and their family for school and asked us to participate. Here’s my contribution … being interviewed regarding how it feels to be a parent to Lillian (who has 18p-)! Go Courtney MacMasters Go! Courtney is sibling to one of our C18 affected friends!

Sibshop for Thomas and Royal Package and Marmite and Calligraphy and The Universe and Finished

March 5 2017:

Thank you Down Syndrome Network of Northern Nevada (DSNNN) andJUSTin HOPE Foundation for another great Sibshop for Thomas!! Looking forward to the May event! Yay!

Thomas Sibshop 3.5.17

March 7 2017:

We received a Royal Mail package yesterday. Thank you Melissa Susan Sheard for the care package. Now we can say we’ve tasted Marmite! WOW!!! It’s salty, for sure!

Royal Mail Package Marmite 3.7.17 #1 Royal Mail Package Marmite 3.7.17 #2

March 8 2017:

Physical therapy day for Lillian. As I was getting back in the car I was moved by the books she’s reading. How did she know I want to learn calligraphy? The other is mine, but she got to it first!

April will be our last month for physical therapy. So much excited about this! We may return to physical therapy after summer, yet not here as I don’t feel she needs weekly appointments. We’ve been coming here for about 6 years.

Plus, I will try to talk Lillian into something different to pinpoint the areas that still need developing … yoga or some kind of dance? We shall see. Hallelujah for endings, new beginnings and new adventures! xoxo

Lillian Books 3.8.17

March 9 2017:

This afternoon was our bi-weekly library visit! This time with a twist. Thomas got to take part in the South Valleys Coding Club at 4:00. It was very basic using Scratch; which he already knows. Yet, they will progress from there. We LOVE the library!!

I’m the Queen of the Mountain

**THROWBACK POST**

February 22 2014:

“I’m the queen of the mountain!” – Lillian Darnell

Celebration time! This young lady remembered all on her own today that she needed to get a book for school from the library. I did not remind her at. All! We did not even discuss it today or yesterday.

Also in the past week, she has been doing basic addition and subtraction in her mind!! This girl! This girl who stood on this little hill today and without any prompting from me said, “I’m the queen of the mountain!”

Celebrate those milestones whenever they come …. however long it takes! ♡

Lillian on Hill 2.22.14