Camilla and Lillian Update for Chromosome 18 Conference in Baltimore and the Fundraiser

June 23 2018:

Lillian and I share that Lillian would like to have a birthday party in Baltimore so that she can actually celebrate in person with her best friends.

And we talk about Lillian selling her artwork as a fundraiser … http://lilliandarnell.com/…/fundraising-for-the-2018-chrom…/

Thanks so much everyone! xoxo

 

The Daughter Knew She Could by Camilla Downs

June 15 2018:

The mom had nearly given up.
The daughter would not.
The daughter held strong to the
knowing that they were going.
Now. They are going. 
And it’s due to her persistence.
In the next two weeks
There’s still some
distance to cover.
The daughter enlisted her creativity
and crafted magical stories
to compliment each of
her selected drawings.
For her fundraising goals
the drawings would be offered.
Have you seen the stories
or the drawings?
The daughter knew she could.
So she did.
-2018, Camilla Downs

Lillian and Camilla May 2018 Date Day 5.22.18 #10

Up the Creek Without a Paddle

**THROWBACK POST**

April 26 2014:

Last night’s reading …. Cookbooks!!

The place we’re house sitting (The Romano Duo’s house) has some awesome cookbooks. One cookbook was created by the American Women’s Club of Lagos, Nigeria …. titled “Up The Creek Without A Paddle”.

It contains an entire section titled “Living in Lagos (Tips for Newcomers)”. So awesome that Mammaw Mann contributed to this book! ♡

Thomas & Lillian Reading Cookbooks 4.26.14

Visiting The Romano Duo in Surprise Arizona – Lillian

May 24 2018:

Tomorrow morning is the beginning of the Team Member L and Romano Duo adventure! Lillian is riding back to Surprise, Arizona with mom and Frank for a vacation for her!! Which means respite for me!

It’s been nearly 3 years since I’ve had respite from Lillian. I’d be telling an un-truth if I said I wasn’t a tad bit excited. And, I know she is too!! May the force be with The Romano Duo … And all the Angels too!! Photo from September 2015

Lillian with Romano Duo Lillian's 14th Birthday Party Virginia Foothills Park 9.13.15

May 25 2018:

They’re off!!! Let the “almost” respite begin for me ….. As I have Thomas here with me. 😜

Lillian’s gonna have a great time!!! Yay for her to get a vacation!! She gets to spend nearly 2 weeks with The Romano Duo in Surprise, Arizona!! Wahooo!!!

Lillian with the Romano Duo Leaving Reno for Surprise 5.25.18 #1 Lillian with the Romano Duo Leaving Reno for Surprise 5.25.18 #2 Lillian with the Romano Duo Leaving Reno for Surprise 5.25.18 #3

May 27 2018:

Sent an hour and a half after she left on Friday!! Ha!

I am incredibly happy she’s getting this time with The Romano Duo and I’m getting a break.

After nearly three years straight of her needing me, talking to me constantly, and being me walking buddy; I’m bouncing back and forth between thinking I should be doing something, being relieved that I don’t have to do anything for her, feeling sad because she’s not here, and feeling free because she’s not here. Crazy stuff …. Yet, all good stuff!!

Text from Lillian 5.27.18

May 30 2018:

I’m as excited about this as Lillian. Well, maybe almost as excited. Turns out one of our Chromosome 18 friends, The Bakers, live near Surprise, Arizona!!!!! Katie came over to the Romano Casa and spent a few hours swimming and hanging out with Lillian.

The Bakers were one of the first families we became friends with at our first conference in 2009 in Vegas and every conference thereafter. Katie deemed herself honorary big sister to Lillian. One of the major reasons going to conference is so incredibly important to Lillian. So beautiful!!!xoxo

Lillian Visiting The Romano Duo Surprise Arizona Katie Visit 5.30.18 #1 Lillian Visiting The Romano Duo Surprise Arizona Katie Visit 5.30.18 #2 Lillian Visiting The Romano Duo Surprise Arizona Katie Visit 5.30.18 #3 Lillian Visiting The Romano Duo Surprise Arizona Katie Visit 5.30.18 #4

June 3 2018:

She’s been swimming and watching movies and eating donuts!! Lillian is having a great time with The Romano Duo.

Lillian at Romano Duo Surprise Arizone 6.3.18 #1 Lillian at Romano Duo Surprise Arizone 6.3.18 #2Lillian at Romano Duo Surprise Arizone 6.3.18 #3 Lillian at Romano Duo Surprise Arizone 6.3.18 #4

June 10 2018:

She’s back!!!!! And she’s cracking me up! “We stopped at the alien store …… “ Only driving through the Nevada desert!!! And, “Patty and Frank say a lot of cuss words under their breath.” And, telling on herself. “I stayed up all night long while I was there. I stayed up till 2:00 one morning.”

Lillian Home from Surprise Arizon 6.10.18

Amazing and Beautiful and Starlit and Shining Bright and Bee

June 3 2018:

Walk with Thomas before dinner. We watched for about fifteen minutes as this momma duck led her wee ducklings through the rocks to the water.

It was difficult to watch and not want to help as they kept sliding down the rocks. They finally made it!!! Safe and sound!! Whew! I circled the ducklings and the momma in blue because they blend with the rocks.

There was quite the cloud show.Rainbow cloud in the second photo. The photo doesn’t show all the colors; yet, it was amazing. Incredibly beautiful!!!

Walk with Thomas Vintage Lake 6.3.18 #1 Walk with Thomas Vintage Lake 6.3.18 #2 Walk with Thomas Vintage Lake 6.3.18 #3 Walk with Thomas Vintage Lake 6.3.18 #4 Walk with Thomas Vintage Lake 6.3.18 #5 Walk with Thomas Vintage Lake 6.3.18 #6 Walk with Thomas Vintage Lake 6.3.18 #7 Walk with Thomas Vintage Lake 6.3.18 #8 Walk with Thomas Vintage Lake 6.3.18 #9

June 4 2018:

After dinner walk tonight with Thomas. Just missed the sunset; yet, still incredibly beautiful! Followed our walk with a starlit swim in the pool. Ahhhhhh!!!! Feeling incredibly blessed and grateful!

Walk with Thomas Vintage Lake 6.4.18

June 5 2018:

Shining bright for all to see and feel.

Sunshine Instagram Post Vintage Lake 6.5.18

June 5 2018:

Photo bombed by a bee. He thinks these are beautiful too!

Pink Flowers with a Bee 6.5.18

Loose Tooth and Cheers

**THROWBACK POST**

April 26 2012:

You see it? That tooth right there? Been loose for about NINE months. We’ve been wiggling it for 10-20 minutes every day for the past 3 weeks to get that sucker out! We had an appointment this past Monday to get it pulled; which I cancelled cause it was SOOOO close! It is OUT and Team TLC will be celebrating! Think this calls for a dance party!

Lillian and Tooth 4.26.12

_______________________________________________________

April 26 2012:

Here’s to Thomas having a good week at school AND here’s to ME for finally getting that tooth out of Lillian’s mouth and here’s to Lillian for being so strong and courageous!! Cheers!!!

Toasting 4.26.12

_________________________________________________________

” …. their really saying, I Love YOU ….. ” courtesy of Thomas who was singing this song tonight … “What a wonderful World”http://youtu.be/m5TwT69i1lU {We listened to a few different versions after he was singing it and his favorite is Louis Armstrong!) It truly is a WONDERFUL world ….

Lillian and Thomas Talk on the Phone

**THROWBACK POST**

April 26 2010:

Listening to Lillian talk to Thomas on the phone! What a hoot!

He keeps asking her questions & doesn’t understand her answers. He can’t read yet so she can’t send a text message!

I hear him saying the same things I say to her, “Just say yes or no”!! If he were here he would be telling her “Go get your phone/device and tell me”! This would be sad if I didn’t choose to have a sense of humor about it!!

The Egyptian Eye Looking Good

June 5 2018:

Thank you to Hunter at Pixels & Ink! Just back from picking up mounted prints of Lillian’s artwork. They are beautiful and ready to go to their new homes!!! Much gratitude to the beautiful souls supporting Lillian’s fundraising efforts. xoxo

Egyptian Eye Mounted 6.5.18 #1 Egyptian Eye Mounted 6.5.18 #2 Egyptian Eye Mounted 6.5.18 #3

If interested in reading about Lillian’s fundraiser, go here …

Fundraising for the 2018 Chromosome 18 Family Conference – In Summary