How Flowers Got Their Color by Lillian Darnell

April 4 2018:

How Flowers Got Their Color

Once long ago, there lived a tree called Magic Olaf and in that tree was tons of flower colors that Magic didn’t know what to do with. One day, Rose said, “Do you mind if I grab 2 colors for the game?”. Magic said, “Sure, you can. I was just trying to figure out what I should do with these colors. ” …. Visit the link below to read further …

How Flowers Got Their Color

Tight Heel Cords and Heel Toe Movement

January 4 2018:

Still following through with the once per week solo hanging out at the lodge for Lillian. I walk her over and she spends 5 minutes on the treadmill.

Still working on that darn heel toe movement when walking and standing up straight. The goal is to keep increasing the minutes. We started at 3 minutes!

Lillian on Treadmill 1.4.18 #1 Lillian on Treadmill 1.4.18 #2 Lillian on Treadmill 1.4.18 #3

The Golden Yellow Colored Pencil

November 29 2017:

“When I first discovered the “golden yellow” colored pencil years ago, I came home and began looking for it right away in my colored pencils. Now I have lots of them and they are great for coloring stars!” -Lillian Darnell

Lillian Pineapple for Where Would You Fly Book 2017

And, apparently pineapple too!! This is one of the drawings to be included in “Where Would You Fly”. We are only days away from seeing a PDF proof of the book! Then, it’s proof ordering time! Wahoo times infinity!! xoxo

Where Would You Fly Updated Cover 9.2017 #2

**Are you interested in helping with the final stage of the book and bringing it to life? You can help by pre-ordering the book. Our goal is to pre-sell 50 books. We’ve sold 15 so far! If this speaks to you, go here … http://www.LillianDarnell.com/author …  

 

Let Your Imagination Be Taken Away – Review Blurb

November 21 2017:

Today we received the second review blurb for the book … Wahooo … Onward for The Philosopher, The Fairy, and The Gypsy (aka Team TLC).

“Let your imagination be taken away with Lillian Darnell’s writings and allow yourself to be transported to places where anything is possible with love, joy and a touch of inspiration.

This collection is born from a young woman with a unique perspective on how our world could be – immerse yourself and come, see the world through Lillian’s eyes.” -Dr Veronica Wain – Award winning filmmaker, Academic, Author, Disability Advocate

HDMS Fall Festival 10.4.14 #1

**Are you interested in helping bring the book to life and move through the final stage of creation? Pre-order your book and you will receive a special gift for helping and supporting this project. Our goal is to pre-sell 50 books. We’ve sold 15 so far. Go here …. http://www.LillianDarnell.com/author … 

Why We Attend The Chromosome 18 Conference Every Summer

January 8 2017:

Top 10 Countdown Continues! The Number SIX 2016 CamillaDowns.com blog post with the most views: “2016 Chromosome 18 Conference – San Antonio” ……. xoxoxoxoxo …….

2016 Chromosome 18 Conference – San Antonio

from the article … “The anticipation of and the attendance at the conference encourage Lillian to set goals and accomplishing them. At last year’s conference she got in the elevator, went downstairs, and waited in the lobby for friends .. all without my assistance or presence.

She used the hand dryer and automatic toilet also. About a week ago she walked across the foot bridge alone, without holding onto my arm. Two days ago she climbed two stairs with holding onto my arm and plans to reach the top of the stairwell before we leave for the conference. All of these are huge accomplishments for her … “

Lillian’s Accomplishments and Goosebumps

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: Arriving Home

C18 Trip July 2016 #134

(I wrote a blog post about embracing my fear on this trip. You can read about it here … “A Rapturous Dance With Life”.)

July 17 2016:

I did it. I did it. I did it. The Journey Home … Arizona to Boulder City to Las Vegas to Reno … Arrived home a few minutes after midnight. We arrived late as we spent about an hour and a half taking a closer look at Lake Mead and The Hoover Dam.

Car is unpacked. I am sitting on the couch and my head is spinning ….. Last Thursday through Saturday I drove Team TLC 1,700 miles. This Thursday through Saturday I drove Team TLC 1,700 miles …. 3,400 miles roundtrip …. to attend the Chromosome 18 Conference – Reno, Nevada to San Antonio, Texas .. A conference Thomas and Lillian have their hearts set on attending every year.

I’m kinda tired. I’m headed to bed and in the next few days I’ll respond to all of the beautiful comments and posts that I have not gotten to over the past week. xoxo …. I DID IT!! … xoxoxo

I forgot to thank Rosey, the car, too. She DID it!! This trip most likely took a year or two of her car life, yet she got us there and back. She had problems with wanting to overheat and nearly lost the driver’s side mirror …. She came through though!! xoxo

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July 18 2016:

… And now that we’re back, I’ve got until next Sunday to decide the next chapter for us. Lease renewal time and there’ll be a huge rent increase if we stay. Whatever is decided will be decided as a team and it will be perfect.

We already know we can joyfully and peacefully live in a small space and now that Lillian has conquered stairs, we won’t have that limiting us! First, a day of rest for me … and then we’ll move forward … xoxo

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July 21 2016:

Something I learned this morning to share …. A timer is NEVER going to go off if one fails to actually set it!

Something else I’ve learned …. It takes 4 full days to recover from two 1,700 mile road trips completed within 4 days of each other. I’m alive .. I feel like me again! Thank goodness!

On another note, now that I’m no longer a recovering road trip zombie … I’ve got to make a decision by Saturday if I’m signing another lease where we currently live.

We had a family discussion about it and thought I’d see if anyone has thoughts. We brainstormed different ideas as the rental rates are so inflated.

The moment a place is listed, that’s reasonably priced, and I call about it, they already have 4 applications! So … different is what we are thinking, swimming the other direction, not following the pack.

We actually really like the small space we’ve lived in since last August. It’s an 810 sq foot 1 bedroom/1 bathroom condo.

These are the 5 different options we settled on today:

1) Stay where we are (We will have to make other adjustments if we do this).
2) Move to a different and cheaper place in this same area, yet we are open to other areas.
3) Buy a camper and travel around Nevada and surrounding states.
4) We love the tiny houses so if we were to find land that would allow and accept rent for parking a tiny house on it, we’d do that! (or renting one that someone already owns).
5) Housesitting (and pay rent to the homeowner) for those who don’t spend all their time here. I know of at least 2 families like this, but don’t know if this is something of interest to people.

Would love to hear thoughts and ideas and some good juju our way would be fabulous too! Oceans of love, blessings, and smiles … xoxo

The 2016 Chromosome 18 Conference: Joy in the Journey

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

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!