The 2016 Chromosome 18 Conference: The Starfish Gala

July 14 2016:

Here are some beautiful people I’m deliriously in love with!!! I am incredibly blessed and thrilled we got to meet face to face and have so many chats Heidi Hulspas!!!!! And please tell Sahara that I will never forget the hugs she shared with me!!!!

So happy to see you Marianna Kuortti!!! Thank you for being you! xoxo …. Plus, a picture of the great schedule for the conference!!

Farewell dance and dinner … The Starfish Gala … Lillian Darnell and some of her friends. Lillian loves her friend Katie and loves staying in touch with Rebecca Parker all throughout the year.

Lillian has a speech impediment and struggles with articulation. Guess what? When one texts, blogs, post on Facebook and Instagram, emails, chats on Facebook, or uses skype; the spoken word is not needed.

In our world of verbal communication difficulties, social media has helped create a world that would not exist for Lillian and one where she has true friends. She has no local friends, yet she has friends all over the United States and the world … As far away as Tasmania, Australia.

Thomas as well. Thomas is unique in his own way and by way of having Lillian as a sibling. He gets to share with other siblings and gets to be mentored by older siblings who have traveled his path. These people are his friends too and every year their friendships deepen. He gets to be amongst others who have long ago released judgments of others. xoxox

Why the Starfish for the Chromosome 18 symbol? This …

The Starfish Story

A young man is walking along the ocean and
sees a beach on which thousands and thousands
of starfish have washed ashore. Further along
he sees an old man, walking slowly and
stooping often, picking up one starfish after
another and tossing each one gently into the
ocean.

“Why are you throwing starfish into the
ocean?,” he asks.

“Because the sun is up and the tide is going out
and if I don’t throw them further in they will
die.”

“But, old man, don’t you realize there are miles
and miles of beach and starfish all along it!
You can’t possibly save them all, you can’t even
save one-tenth of them. In fact, even if you
work all day, your efforts won’t make any
difference at all.”

The old man listened calmly and then bent
down to pick up another starfish and threw it
into the sea. “It made a difference to that one.”

Thanks Missy Baker, Marie McGing, Nora Schaefer, Heidi Hulspus, and Natalie Abreuhorne for sharing your pictures with me!!

The 2016 Chromosome 18 Conference: The Alamo

Thomas says I’m delirious. I was just going through the pictures I took at The Alamo … Laughing so hard that my stomach hurt. Who goes to visit The Alamo and takes one picture of the building and 20 of the oak trees and flowers? That would be me. I seriously didn’t realize I’d done that until now. Thomas is right. I’m deliriously in love with nature and taking pictures of her grace and beauty.

As I was beginning to pack the car Thursday morning, Thomas asked if we were going to see The Alamo before we left as it is on his list of places to visit. At first I told him we needed to get going and wouldn’t be able to do it this trip.

I changed my mind and said, “Yes, let’s do it.” He and I walked over while Lillian was finishing breakfast and getting dressed. It was only about a 5-7 minute walk from the hotel.

I’m incredibly grateful I listened to my heart. As we made the 3 day drive home, I asked each of them their most memorable moments. One of Thomas’ was seeing The Alamo ….

Beginning pictures with this amazing 140+ year old oak tree that was transplanted to the Alamo when it was a wee 40 years old! The main branches are over 50 feet long! I could have hung out with this tree all day! AMAZING!!!!

I didn’t realize it until looking at the pictures on Friday, but I only took ONE picture of the building. All the rest are of the walk there and the nature surrounding and within The Alamo. May you enjoy this view of The Alamo. xoxo

The 2016 Chromosome 18 Conference: Beauty and History at Every Glance

(This is part seven of The 2016 C18 Conference Journey. Go here for part one.)

July 15 2016:

One more solo walk early yesterday morning ….. Strolled along for about an hour. Beauty and history at every glance. Nature shares her beauty and inspiration for all. She cares not who you are or where you are from … xoxoxo

The 2016 Chromosome 18 Conference: Kindness and Pizza and Surprise Encounter

(This is part six of The 2016 C18 Conference Journey. Go here for part one.)

July 14 2016:

The Journey home … San Antonio to Las Cruces, New Mexico!! Had an amazing dinner at this lovely place! We got there at 8:50. They close at 9:00, yet invited us to come on inside and we had THE BEST brick oven cooked 4 cheese pizza EVER!!! …. With an amazing salad and pistachio gelato for me and lemon sorbet for Thomas!! Plus shaved carrots and prosciutto for Lillian since she doesn’t eat pizza or salad! xoxoxo

Look who we ran into!!! The Romano Duo and Team TLC got to cross paths in Las Cruces, New Mexico this morning. Spent about an hour together chatting. Now we head in different directions. xoxo

July 15 2016:

The Journey home …. Las Cruces, New Mexico to really close to the Nevada border. Was going to try to make it to Boulder City today but we spent an hour with The Romano Duo this morning since they were driving right by Las Cruces where we had stayed for the night.

Then, we hit rush hour traffic in Phoenix. The hour with The Romano Duo was totally worth it. Long drive tomorrow, yet we will be in our own beds tomorrow night!! xoxo

The 2016 Chromosome 18 Conference: Riverfront Walk With Lillian

(This is part five of The 2016 C18 Conference Journey. Go here for part one.)

July 13 2016:

Wonderful, warm, and beautiful walk with Lillian yesterday. Blessed that she, too, loves our time in nature. Looking, listening, and discovering. xoxo

The 2016 Chromosome 18 Conference: Stairs Conquered

(This is part four of The 2016 C18 Conference Journey. Go here for part one.)

July 13 2016:

Welcome to a different new … Check out these 3 sets of stairs Lillian conquered!!! You go beautiful you!!!

Lillian has had a fear of stairs since being a toddler. We have always had to use an elevator and if one has not been available; she has held tightly to me with a white knuckle grip with sweaty hands and tons of anxiety.

So exciting!

The 2016 Chromosome 18 Conference – Riverfront Walk With Thomas

(This is part three of The 2016 C18 Conference Journey. Go here for part one.)

July 13 2016:

Thomas and I went for a walk yesterday morning before he went to hang out with his friends. I deeply love that he enjoys this as much as I do …. Between this walk and my own solo walk, my heart was refueled. xoxoxo

 

The 2016 Chromosome 18 Conference: Deja Vu and The Riverwalk

(This is part two of The 2016 C18 Conference Journey. Go here for part one.)

July 10 2016:

The one who says to me as we’re driving through the amazing rock formations after going through the Boulder Dam area … “I always have deja vu, like I’ve lived this life before. He said it all seems so familiar.” … and when we encountered some difficulties on the trip down … “When you get a rock in your shoe, just shake it out” ….. I deeply love this little human … Thomas Darnell …. xoxo

July 12 2016:

Took a much needed walk this morning. Feeling so out of place here. This was exactly what I needed. Felt like a massage … So relaxing, refreshing, and inspiring. I love nature. xoxo

 

 

 

The 2016 Chromosome 18 Journey Begins

July 6 2016:

Rosey got a bath today to get ready for our trip!! Going through the car wash is so fun!

If it feels right we would appreciate love, good juju, prayers for our car, Rosey, and our journey. Rosey is 15 years old and we need her to take care of us and get us there and back safely and smoothly. Oceans of gratitude!! xoxo

Rosey Getting Car Wash July 6 2016

July 8 2016:

Whew!!! We made it somewhere!!! Team TLC is in Surprise, Arizona! We left Reno at 7:00 this morning and at 9:00 tonight we came upon Surprise. We said, “yes, we’ll take it!”

Sorry for our silence. I do not pay for data so we are not online again until we have wifi. Onward to Texas tomorrow. Does anyone know a good stopping overnight point between Tucson and San Antonio via I-10?

July 8 2016:

Surprise, Arizona to El Paso, Texas … We made it to Texas! We’ll be in San Antonio tomorrow late afternoon. Amazing rock formations in Arizona and New Mexico. We will come back when it’s not so hot!!

Lillian and I don’t do well in this high heat! Rosey was even getting too hot! This is a ton of responsibilities for one adult and I am learning so much! Yet, I have so much fun traveling with them. They are such wonderful teachers of living in the moment. My heart swells to overflowing with love …. xoxo

I am writing like the wind before I get this tired mind and body into bed and be ready for one more day of driving tomorrow. I am compelled. I have just got to document some of what we are experiencing and talking about.

Thomas had such amazing thoughts to share yesterday and Lillian also yesterday morning before she got a tummy ache. Although we are having a ball and laughing tons and enjoying this beautiful land as we drive by it; this has not all been fun and easy, and it was my goal to have this trip be a learning experience for me of not knowing, not planning, and just going. That’s certainly not for everyone.

Yet, I felt this was important for me. It’s a huge step out of my comfort zone. One step closer to trusting myself, trusting internal messages, and letting go of how it’s supposed to be done. I’ve never driven this far alone … Much less alone with Thomas and Lillian. Plus driving this far in a 15 year old car. Skating through this trip on less than a shoe string budget and letting go of worry that the string will hold tight …

I’m having moments when I’m so tired I’m shaking and wondering what in the hell I’m doing ….. Yet, I know. I may not know on the surface right now; but deep down, I know why I do what I do. And then we share these amazing moments together with wonderful comments from Thomas and Lillian and moments full of so much love that further each one of us. Moments where I’m so hot and exhausted, I have visions of taking an ice bath! Definitely some amazing growth for all of us happening! WOW! xoxoxo

July 9 2016:

El Paso to San Antonio! We made it about 5:30 this afternoon! Been a whirlwind since.

There is so much unexpected loving-kindness flowing my and our way … WOW!!

I just drove Team TLC 1700 miles … I did it! Now. Where’s my bed?

 (Go here for part two of the 2016 Chromosome 18 Conference Journey.)