October 4 2016:
Lillian wrote a play this time! Go Lillian!! Check it out! xoxo
“Hey, everyone! This play will help you learn about the history of art. For those who like art will probably be interested in the history of art. You can use this play for school and other educational uses if you want to.
Narrator: Welcome to History of Art! Let the play begin.
September 14 2016:
So this one turns 15 at 11:27 pm tonight … We’ve been celebrating all day as hopefully we’ll be asleep by that time!
… And she spread her wings …. Took a deep breath … And, just like that …. She FLEW!!! xoxo ….
For anyone who has been following all of the amazing accomplishments Lillian has made since this past July, you truly understand my comment above. They are happening so fast I cannot even keep up with posting them here.
See this picture below .. That’s a first … Taken last night on a Team TLC adventure. Jumping in the air bunches and bunches of times while I took 771 pictures of her …
4 pounds of heaven grown into a full blown fairy angel who knows she is to be a writer and helper. She has indeed done it her way … From butt scooting instead of crawling, talking different than others, eating, drinking, walking different than others …. and on and on and on … Blessed, blessed, blessed and so grateful we chose one another to teach and learn. Happy Happy Happy 15th Birthday Lillian Darnell!!!
Today is her day. After physical therapy this morning I took her to pick out sparkly headbands, then for gluten free donuts at Haven on Earth, and then home.
After resting for a few minutes, she opened her gifts, Thomas and I sang her Happy Birthday, and then we ate way too much of the gluten free chocolate cake (with oh so yummy cream cheese frosting) that we made last night.
Then we finished the celebration with a “live” Facebook birthday party!! That was interesting and fun!!!
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
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
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.
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!!
(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
(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!
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 …
(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
July 4 2016:
Just back from an adventure! Made popcorn, grabbed some jelly beans, found a perfect spot to park in Reno so as to watch the fireworks in Sparks …. Absolutely wonderful spot away from crowds and the boom, boom of the fireworks. This is how we roll with sensory issues …. What FUN! xoxo
July 5 2016:
She’s up to 8 steps now!! This is so wonderful! She has NEVER gone up stairs without clinging to me for dear life!!!! We have always avoided stairs due to her fear and proprioceptive issues.
She made it a goal to reach the top before we leave for San Antonio. Tomorrow she’ll be going up the last 10 steps since we leave Thursday morning. Stay tuned … xoxo
July 6 2016:
Just wanted to share another Biggest Little Photographer update …. And since we’ll be leaving on Thursday for the C18 Conference here’s a picture that minifigure photographer took while at the 2014 C18 Conference … New York Harbor … xoxo
Our goal was to have received 100 pre-orders of Thomas’ Biggest Little Photographer book by July 1st. We didn’t reach that goal OR did we? They’re still coming in and we’ve had about 30 pre-orders for the book now. Some orders are still coming by check so not sure of the exact amount.
However, sometimes what we wish for is delivered in a different way. After calculating money we received last week … When divided by $20 (average price for book) … It comes out to 100 …. Ummmmm … WOW!!
So we actually exceeded our goal! Our goal was met in a miraculously creative way … With 2 couches, a bayou Angel and her mom, and the loving-kindness of those who shared, liked, commented and purchased. Team TLC overflows with gratitude and sends blessings and love to all … xoxo
July 6 2016:
A State of Pure Awareness – New blog post that poured out so fast and hard I was barely breathing and two hours went by that felt like 30 minutes ….
” ……… My therapists have been the authors of the books I read. Two of my greatest teachers have been my kids, Thomas and Lillian. Other teachers have been the suffering brought on by my thoughts, beliefs, and ideas, and those with whom I have shared un-lovely moments. The friends I share absolutely everything with are nature, meditation, and my own version of praying.
I continually ask to see things differently, to question the thoughts, ideas and beliefs I have. I ask to unlearn thoughts, beliefs, and ideas that no longer serve me. In the few days before this experience, I had finally come to a point where I authentically released and let go of all that I wish for and want. I let go of it with tremendous love and with the knowing that I would absolutely receive once I let go of the longing.
Here is what I experienced ….. ……”
To read the entire post visit here …. It’s the first post on the blog. xoxoxo
July 6 2016:
We leave first thing in the morning …. And two goals reached today!
Top of the ladder at physical therapy and TOP OF THE STAIRS … Without clinging to me!
She DID IT! Oceans of gratitude for all the encouragement!!! xoxo
Thank you oceans and oceans for the wonderful cheering for Lillian!! Yesterday, she went down 2 flights of stairs and one huge flight to get from the main level of the hotel to the Riverwalk!! Four years ago when we were here we had to take the elevators down ….. I’m so happy she listens to her intuition and body and does things as she knows she’s ready! xoxo
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
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?
