She Did It! The 2018 Chromosome Conference – Baltimore Maryland

Lillian faced many fears and had many firsts this year at conference. Each year, each conference she makes wonderful progress! Go Lillian Go!!

Not to mention a FIRST of selling and autographing her first published book!! Wahooo!!

Chromosome 18 Conference 2018 Baltimore Maryland 7.1.18 #60 Lillian signing books

July 2 2018:

Lillian just went out to eat with a group of friends. Alone. Like. Without me. FIRST TIME she has joined the self advocates doing anything! YES!!! Hallelujah!!

She typed her order in her phone before leaving so she can show it to the host. I put money in her name badge and texted her instructions for paying her bill after explaining verbally how to pay.

She’s worried. And keeps texting me. Yet, at least she finally took that first step! The hardest one! Wahoo!!

Lillian and Camilla May 2018 Date Day 5.22.18 #9

(This post received 242 likes/loves/wows and 142 comments on facebook. Deep gratitude for everyone cheering for Lillian!)

And the below post announcing the success received 121 likes/loves and 31 comments! Thank you everyone!

Chromosome 18 Conference 2018 Baltimore Maryland 7.2.18 #84

July 3 2018:

Here’s another first!! Lillian has never participated in the self advocate panel!!! Listening. A first step!! Wahooo!!!!

Chromosome 18 Conference 2018 Baltimore Maryland 7.3.18 #85 Lillian text about self advocate panel

July 6 2018:

Fear of escalators: We’ve always had to use the stairs or elevator when Lillian was with us in the past.

No longer! Lillian rode the escalator on Friday, the 29th, at the Reno-Tahoe Airport! She held tight to me and was worried. Yet, she did it! The ultimate goal is to ride the escalator without me beside her. Wahoooooo!!!!xoxo

Lillian Rode the Escalator Post 7.6.18

July 7 2018:

Another fear bites the dust. In the past Lillian has chosen to walk throughout the airport attached to my arm. Not the easiest for me while pulling a carry on bag plus her bag.

When we got to the airport in Baltimore readying to leave, I explained I needed her not to hold onto my arm and to just walk beside me.

After sighing, she said “Okay”. And did just that. Throughout the entire Baltimore, Vegas, and Reno airport!

PLUS! This included the HUGEST fear at the airport ….. The PBB. She walked through the passenger boarding bridge NOT attached to me!!! She stepped from the PBB into the airplane NOT attached to me AND walked the aisle of the airplane NOT attached to me!

Hallelujah!! Ahhhhhhh …. Freedom for both of us!!! (Picture from 2016 – Another first! First time catching air for a photo!)

Damonte Ranch Walk 9.13.16 #4

July 8 2018:

Okay. Here’s the last one …. For this time around … Thank you to everyone for celebrating in our joy of laying to rest some fears and for having many firsts!!

While in the airports on the way back home, Lillian went into the airport restrooms without me!! We went from the first traveling experiences all those years ago of having to travel with post it notes to cover up the automatic flush sensor, to going in alone!! Yes, Yes, Yes!!!

Much gratitude to our friends and family for celebrating these seemingly small, yet HUGE, accomplishments at 16 years old for Lillian!! Wahoooo!!!

Lillian South Valleys Library 9.13.17

Best Friends – Together Again – 2018 Chromosome 18 Conference in Baltimore

July 1 2018:

Best friends! Together again! Macy Miller and Lillian. Someone asked if they are twins! They both love to laugh and giggle!

Chromosome 18 Conference 2018 Baltimore Maryland 7.1.18 #71 Macy and Lillian

Chromosome 18 Conference 2018 Baltimore Maryland 7.1.18 #81 Macy and Lillian

July 1 2018:

We had dinner with The Miller’s and just look at these two lovelies! The Giggle Duo, indeed! Look how happy they are! Lillian and Macy = Happy to see one another after a year apart!

July 3 2018:

Chromosome 18 Conference 2018 Baltimore Maryland 7.3.18 #88 Camilla Ladies Night and Macy and Lillian

July 4 2018:

Chromosome 18 Conference 2018 Baltimore Maryland 7.4.18 #111 Farewell Dinner & Dance

Chromosome 18 Conference 2018 Baltimore Maryland 7.4.18 #95 Farewell Dinner & Dance

Chromosome 18 Conference 2018 Baltimore Maryland 7.4.18 #115 Farewell Dinner & Dance

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