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: 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!

Reaching for the Stars

Lillian Going Down Stairs July 2016 San Antonio

She’s reaching for the stars … And she will have what she reaches for …. Incredible, wonderful, inspiring blog post that Lillian wrote yesterday … xoxo

“Hey, everyone! This blog post will include 2 stories (1 non fiction and 1 fiction), inspiration, and a fiction interview. Let’s start with the non fiction story.

One day, my body decided I was ready to try the ladder at my therapy place. Slowly but surely, my body had decided to try the stairs. Now I can easily walk up them alone without being scared. Ever since, I’ve been proud to have touched the stars. (If anyone wonders what’s next, it’s escalators).

Let’s move on to the fantasy version of a story. I hope you enjoyed the 1st story!

Once, a young girl named Rainbow had wanted to be able to go down stairs for a long time but her body wasn’t ready to do it. Many years past before her body started to sense that she wanted to achieve the goal. When she was probably 14, her body was able to take the hint fully. So she took her time up until Wednesday when she achieved the goal. She was very excited. She was reaching toward the stars.

Let’s move on to the interview. This is where you will find more details about the first story. Speaking of story, I hope you enjoyed the 2nd story. (If you are wondering, this blog post is inspiration based). …………. The moral is to reach for the stars.”

Go here to read the entire story

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