Tag Archives: 18p deletion

Happy World by Lillian Darnell

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July 21 2016:

Lillian got inspired by a drawing she created yesterday …. This is an incredible story and looks like it will be the story of how Mr. Happy Tree came to be.

Lillian drew a tree last summer that we named Mr. Happy Tree and I told her he is going to be a great book character … The 2nd picture is Mr Happy Tree from last summer. Hope you enjoy …

“One day, a bird picked up a seed to eat. A few minutes later, the bird decided that it wasn’t the right seed. The bird threw it back down. That was the beginning of the Happy World.

As the years past, the tree grew until it had several branches and a strong trunk. The strong tree became known as the Happy Tree. The Happy Tree decided to produce a seed. The seed grew with happiness and love. One day, the seed blossomed into a young beautiful tree that didn’t grow much after that point.” Go here to read the rest … https://lilliandarnell.com/2016/07/20/a-happy-world/

Blessings,
Thomas, Lillian and Camilla = Team TLC
See It. Share It. BE IT … Spread Love Everywhere You Go!

Wonderfully exciting news! We’ve completed the first book trailer for Thomas’ upcoming book, Biggest Little Photographer. You can learn more and pre-order here.

Lillian’s Accomplishments and Goosebumps

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Lillian & Camilla May 2016 Date Day #6

July 20 2016:

We shared with Lillian’s physical therapist on Wednesday, the 20th, the pictures of her using the stairs and also about one other achievement she met while on this trip. Jillian, her therapist, got goose bumps! This is good stuff!

YES!! There’s another one that was accomplished. It’s a personal and private achievement … Just know, she did it! Took 14 and a half years, yet she did it!!! Wahooooo!! We are happy to share with any other C18 parents (or other special needs parents) … Just comment here or message me. YAY, WAHOO, and Let’s celebrate!! xoxo

I double checked with Lillian’s PT for the accurate names of what she’s been working on with Lillian for the past year … Straight from her: We have been working on integrating Fear Paralysis Reflex, Moro Reflex, Galant Reflex and Tonic Labyrinthine Reflex and Body Mapping. … xoxo

The 2016 Chromosome 18 Conference: Joy in the Journey

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Joy in the Journey …. Moments of Loving-Kindness During the 2016 Chromosome 18 Conference ….

Beautiful and Meaningful Bracelet

…. Then there was the mom who gave me this bracelet and said, “Y’all bust your butts to get here every year, and I want you to have this. I love you and your kids. I thought of you as I was making it.” This caused my eyes to sweat …. xoxoxoxo

C18 Trip July 2016 #122

Offered a Place to Stay + Embarrassing Moment for Me

I did not plan the driving part of our trip, except for the route we would take. I had decided that I would just drive until I was tired or about 7 or 8 hours and just get a room wherever we were at that point.

When we reached Las Vegas I thought we might make it to the Phoenix area. So I sent a text to an 18p- Mom friend who lives in the area as she had said to let them know if we are stopping there for the night.

After we left Vegas, I had no reception until we reached Surprise, Arizona which is on the outskirts of Phoenix. As I was inquiring about a room, all of her texts and messages came through on my phone (that had not come through over the past 5 hours).

She and her husband have a standing room at a Scottsdale hotel and offered to let us use it. I was so wasted and absolutely could not make a sound decision at that point as I had been driving since 7:00 am and it was about 9:15 pm.

I didn’t think I could figure out how to get there in the dark and Thomas and Lillian were so tired. It would have been 45 minutes without taking any wrong turns so I decided to take the room where we were.

I am incredibly grateful to them for offering and for texting and talking with me in my delirious state only to have me not take them up on their wonderful offer. I was quite embarrassed with myself … 😉 ….

After we were in our room, we received 2 more offers for a place for us to stay the night (which could be used on our way back through). One in Surprise, Arizona and one in Yarnell, Arizona.

National Parks Employee

There was the National Parks employee at Lake Mead … I saw that it would cost $20 for us to enter the park and drive down to the lake. I also knew we would only last about 15 – 20 minutes since Lillian has a tendency to overheat .. Big time.

Overheating so badly that she throws up for an hour. So, I explained about Lillian and she said .. “You want to go ahead and get her a lifetime pass and you can enter all national parks for free.” …. xoxoxo

Ticket Gifted for Ladies Night

The moment we arrived in San Antonio I had a message from another 18p- Mom that she was looking forward to seeing me and had bought my ticket for ladies night. She didn’t want me to miss out and wanted me to have a night out with the other moms. I had not planned on going due to the costs and had not shared that with anyone. xoxoxo

Duct Tape

Before we left I asked the hotel if they had any duct tape. And what do you know .. they had the engineering/electrical department bring some up to the room! Wonder if they’ve ever had that request? I had to make a little Rosey repair before we headed out. xoxoxo

Hotel Manager Kindness

Before the hotel ran the charge for the entire stay on my debit card, I forgot to tell them that we’d be checking out a day earlier than planned. They also added in $40 a day for incidentals. We were on this trip on a very tight budget, so I needed that extra night reversed and not to be charged the $40 incidentals.

The manager on duty went way out of her way to correct the charge. It took us two days but she got it reversed so we could run the lower amount through and they did not charge me the $40 per day incidentals.

In talking with her about parking and how I had looked online for less expensive parking while there (cost $40/day for the hotel parking), she shared with me how I could park for free for our entire stay .. just steps outside the front door of the hotel. xoxoxo

Painted Rocks

There was the mom who asked about commissioning Thomas to paint 10 rocks for her so that she can give them as “thank you” gifts. Thomas is so excited and he will save most of the money for conference next year. He’s finished the first one .. a shell with pearls on the backside! He wants to create seasonal themes. xoxoxo

Thomas Painted Shell Rock July 2016

Chatting and Veggies

During the ladies night dinner, I had a pounding headache. I rarely get headaches but something I ate at lunch didn’t agree with me. A beautiful and amazing 18p- mom sitting across from me, noticed my distress, and invited me outside onto the patio.

It was extremely loud in the room we were using due to all of our voices echoing and that was doing a number on my head! We stood outside and admired the river and chatted and took pictures. Later she ordered a plate of steamed veggies and shared half with me as everything except the rice had meat in it.

Here’s hoping you find the Joy in Your Journey. It’s there. Trust me. It is.

The 2016 Chromosome 18 Conference: The Journey Home

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The trip back from the C18 Conference – Quick stops on Saturday at Lake Mead and Hoover Dam … We will definitely go back for another visit when it’s not so hot and we are able to take our time. So incredibly beautiful!

So incredibly beautiful!! – Have Thomas takes pictures and he takes 20 at one time! He takes pictures all the way up til I walk over and take the camera away. So … Bonus, blooper picture! It was hot, hot, hot so had to have all that hair off of me!

The 2016 Chromosome 18 Conference: The Starfish Gala

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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!!

Angels and Monarch Butterflies and Adventures and Traveling

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June 27 2016:

With my respite time tonight, I made myself a grand dinner … a lovely, big bowl of popcorn. This is how I get all wild n crazy when I have a night to myself … and then I proceeded to have the most beautiful experience.

I’ve written a blog post about it that felt like I’d been writing for about 30 minutes and it had been an hour and a half. It’s still in raw form, yet I felt moved to share a snippet ..

This morning a bayou Angel and her Mom came to my assistance. One who feels I am a gift to her in how I show up and live my life. As I sat eating my dinner of a lovely, big bowl of popcorn, I simply stared into the bowl at each kernel before eating it. As I scooped up and popped the last bit of popcorn into my mouth, the bayou Angel and I exchanged our last email for the day agreeing that our having re-connected was divinely arranged.

William Blake’s “To See A World … ” came to mind and it was as if the flood gates opened. Not only to let flow tears of knowing, tears of joy, and tears of love …. It was the flood gates of my entire life flowing out around me and wrapping me in the knowing that there have been no accidents in this life of mine.

“To see a World in a Grain of Sand
And a Heaven in a Wild Flower,
Hold Infinity in the palm of your hand
And Eternity in an hour.” ~William Blake

It has been divinely laid out. Every encounter, every relationship, every friendship. I saw the synchronicity of having lived 3 years of my life in Houma Louisiana in the mid 80’s, the deep unhappiness of my family life at that time and how the friendships I formed were my saving grace. Not only a saving grace back in the mid 80’s, a saving grace in the year 2013 and 2016. Unbeknownst to me a mutual, symbiotic relationship of one inspiring the other and one becoming a messenger angel for the other.

Everything that I have experienced ….. ” More after I clean it up a bit. It was poring out of me so fast … That was some bowl of popcorn!! xoxoxo

Popcorn June 27 2016

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June 28 2016:

She’s still at it …. and she’s good! Another from Lillian … xoxo

“When you or someone else is calm, you will feel a lot better. You will be more confident and relaxed. You will be happy, mindful, grateful, thankful and joyful.

Take a moment to read this quote. If you want to, share it with family, friends, and relatives.

“Holding on to anger is like grasping a hot coal with the intent of throwing it at someone else; you are the one who gets burned.” – Buddha … “ https://lilliandarnell.com/2016/06/21/emotions-with-animals-calm-monarch-butterflies/

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June 30 2016:

My words from this time last year (below) …. May the words inspire and encourage those whom it is meant for … xoxoxo

Still so meaningful to me as we are about to embark on our longest road trip so far in Team TLC history, still not knowing with certainty how we will pay for it all, and when we get back, we’ll be deciding by the end of July on the course of a new adventure …

The need to know when, how, where, and what next; can at times, be the very block that keeps us from fully experiencing life and experiencing it as our true selves … minus the ideas and beliefs of others.

words from June 2015: “Team TLC has come to the end of a chapter in our adventures and we embark on a new chapter. This chapter will be a living-in-the-moment adventure, with intentions of it being FUN and memorable.

I don’t have plans, I don’t know where we’ll live after the summer with the Romano Duo, I don’t know exactly what will happen. I am not always okay with this, but mostly I am. I feel the desire to know exactly how things will happen and the worry that accompanies this are just fears.

In the past I’ve spent a great deal of time confronting and connecting with these and other fears and they no longer have power within me. I know these fears are not the true me and as long as I live from the heart with love as the foundation of all actions, I, and the rest of Team TLC, will be blessed and affluent.

I DO know where I want to live and have much clarity about the role I am to play in being of service. That is all I need to know for now. Connecting with emotions, specifically fear, has been one of the most empowering “non-actions” I have ever taken …. May you choose to connect with any emotion that holds you back.

I know everything will be okay and worry has no hold on me. That’s not to say that worry is no longer present in my life. I am now able to recognize worries, fears, anger, complaining, the desire to be right and have someone else be wrong, as simply the ego throwing a tantrum because I am stepping into my power.

The world is a beautiful love-filled place and none of us were meant to suffer. Our suffering is self imposed with the thoughts that we consciously and unconsciously choose to think. I have chosen to go deep, clear out all the crud and live at a deeper level. xoxo”

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July 2 2016:

Team TLC will be traveling the blue route, in the attached screen shot, from Reno to San Antonio. We’ll be leaving either this coming Thursday or Friday.

Do we have any friends along this route who would be interested in letting us borrow a bed or couch for a night’s sleep? We’ll be driving anywhere from 6-9 hours each day for 3 days … depending on where we stop for the day. Oceans of love and gratitude .. xoxo

ishot-68

Need You To Help

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“I need you to help” – Lillian Darnell … I know, what’s so special about that? Lillian said this CLEARLY. Every single word. Said it slowly and pronounced EVERY single word! It is a time to celebrate when Lillian clearly states a complete sentence intelligibly. WooooHoooooo, Happy Dancin, High Fives and Toasts all the way around the World!! “I Need You To Help” – EVERY WORD PRONOUNCED INTELLIGIBLY!! 🙂

3.6.12

February 2 2012: Cards and Batman and Falls

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Today was all about making Valentine’s cards and putting puzzles together!

And, we had a visit from Batman! I’m such a lucky girl!

Lillian falls often with her balance and depth perception issues, especially with socks on and these tile floors. She had a pretty hard fall tonight and said “I wish I wasn’t an 18p- girl.” Now that one felt like a punch in the gut with some wrenching of the heart to go with it. I LOVE that girl! All is okay with Lillian now and she went to bed smiling and happy! I was the one that this lingered with for a while! I wrote about it here.

Camilla