Category Archives: Musings

The Celebration of Life

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July 22 2016:

We’re reading Norman Cousin’s book, The Celebration of Life, out loud together. When I began reading the section about mesons, atoms, the neutrino, and Galileo’s infinite instants; Thomas was glued to the book and didn’t want me to stop.

We only read a few pages a night. He loves mesons (which I have never heard of or don’t remember learning about) and when I was describing infinite instants, he yelled, “I know what that is”, before I got to the section with the term in it. I am so incredibly blessed by this young man, his spirit, his heart, his light … xoxoxo

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.

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!!

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

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(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: Stairs Conquered

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(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!

Thomas and Lillian and Book Authors

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April 20 2014:

I think it was about 6 months ago when I posted about Lillian and Thomas emailing authors of books. Lillian usually tells them what her favorite part of the book is and how much she enjoyed it. Thomas likes to ask them for tips on writing his own book and if they know other authors of books he’s read.

In one of Lillian’s latest reply emails from an author he was so impressed with her website that he offered to be interviewed on her blog! Thomas is networking even though he doesn’t know he’s doing it. There’s one author of a very successful series that he would like to email/talk with. In emailing with other authors he is asking them if they know the author he can’t easily get in touch with!

He says one of the authors said they did not know another author he asked about, but that they were going to look him and his books up! I’m so happy these are the two people I get to be on this journey of life with!

The 2016 Chromosome 18 Conference: Deja Vu and The Riverwalk

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(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

 

 

 

Fireworks and Popcorn and Biggest Little Photographer and Awareness

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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

Lillian going up 8 steps July 5 2016

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

Lego minifigure new york harbor July 2014

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

Welcome to High Desert Montessori

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April 20 2012:

Celebration dinner. Marsala chicken, mashed potatoes, garlic cheese bread and caesar salad. Got our “Welcome to High Desert Montessori” message for next school year for Thomas and Lillian!!! YAY!!! Here’s to Team TLC!!

Celebration Dinner 4.2012