September 7 2018:
Lillian is still going to the lodge once a week for independent time. It’s been a year now. Yay!!! She stays anywhere from 1-3 hours.
I stay with her for 10 minutes while she walks on the treadmill working on that heal toe movement. Then she reads, does artwork, and uses her phone.
During the summer she incorporated going to the pool while she’s there. Had the pool all to her self yesterday! Except I crashed her solo pool party for a quick swim too! 💦💙💦
August 26 2018:
Not normally my style of music. yet, Lillian shared this with me as she finds it deeply inspiring. Once I listened to the words; I, too, find it deeply inspiring. Dream, See, Write, Live Your Story … These are the etchings of my heart and listening to this song has awakened those etchings even more … May you enjoy …. xoxo
August 29 2018:
Lillian got to spend the night with The Romano Duo last at GSR!! What a Diva!!! She loved the pool!! Now she’s off shopping for a birthday gift.
August 21 2018:
Water balloons at the park!! Beautiful and fun night!
August 5 2018:
UNO time with Lillian!
August 5 2018:
Sunday’s fun adventure!! The car wash!! We came. We saw. We laughed. We went through the worlds largest blow dryer. What an experience! Seriously. Who takes 14 pictures going through the car wash??!! Hahaha!! 😂😜
Rosey is incredibly clean now. I’m so blessed we still have fun doing this after all these years. She’s so clean, we could live in her!
August 6 2018:
Homeschool swimming fun at Historic Bowers Mansion. Plus one accidental photo. Thought it was cool as it shows Thomas’ haphazard flip flops, and the fact that he got more sunscreen on the concrete than himself, plus my wet leg and a refreshed me!! That water is cold, yet felt so darn good!!
August 8 2018:
Am I the only one in the Twilight Zone the past 2 months?
My brain is tired, my body aches, and the rug keeps being pulled out from under me.
And, I’m sure I’m the one pulling the rug. I’m the tormentor and I’m the holder of the key to freedom.
I keep getting the two confused! I’ve been trying to fit into the box and the Universe keeps squishing it flat and sending it back to me!
Holding on by my fingernails … Come August 21st I best have grown those damn wings cause that’s when the last fingernail breaks loose …
I think I’ll go with Rumi on this on …. This Rumi quote hangs on our fridge to remind me when I need it. Oceans of thanks Rumi …. xoxo
It’s time to be grateful for and honorably treat these guests of sorrows who are sweeping the house empty ….
Tomorrow, that is. I shall treat them honorably and be grateful tomorrow. Tonight, I rest …. and perhaps they will rest too … xoxo …. Oceans of love to any and all who be hosting a house of sorrows lately …. YOU are not alone! xoxo
July 26 2018:
Lillian and Camilla July 2018 Date Day
First stop: Fries for Lillian and a beautiful purple flower shortbread cookie for Lillian and a vegan oatmeal and date cookie for me. That was one darn good cookie!!
Second stop: Lillian absolutely LOVES decorative throw pillows. So we spent about 30 minutes ooh’ing and aah’ing over the shiny, sparkly, and oh so soft pillows.
Third stop: A special feature of one of Lillian’s most favorite movies: “Barbie and the Diamond Castle” in the lodge theater. We’ve been watching this ever since Lillian was about 5 years old so I’m sure we’ve seen it at least 109 times!
We would have loved to have a walk at one of our favorite places; yet, just too hot!! Perhaps later tonight! xoxo
Ended the date with a sunset walk. Just beautiful!
July 19 2018:
Thomas and Lillian used to frequent Ms. Kat’s place from the time Thomas was about 3 years old. They both love Kat McLain so much and have NEVER stopped wanting to go visit here and there.
It’s been a really long time!! Kat was able to get them in today so they could hang out!! Happy people!!!!!
July 20 2018:
It’s a s’mores kinda night. I feel I have perfected the “s’mores in the oven” technique.
**THROWBACK POST**
July 22 2012:
Thomas and Lillian have been “mining” for crystals the past few days …
“Mom, Lillian and I have been discussing something very important. We want to open a jewelry store inside of another very busy store. We will sell our jewelry, use the money to buy more supplies, make more jewelry, sell more and keep doing that. What’s that called? (Before I could answer) The circle of trading? We want to do it right now. Can we?” -Thomas Darnell ….. ♥ ♥ ♥ …
You Go Thomas … You’re one AWESOME 6 yr old!
The 2018 Chromosome 18 Conference was enjoyed by all three Team TLC members!
We shout a huge and hearty THANK YOU to The For Kids Foundation who paid for my and Lillian’s registration fee and airfare … AND … to friends who supported Lillian’s fundraiser and purchased her book, my book, and Thomas’ book! That covered our food and a wee bit of the hotel stay!! ….. AND … The Nevada Governor’s Council on Developmental Disabilities’ Consumer Leadership fund which covered the remainder of the hotel stay!
We are deeply and incredibly grateful for everyone’s support and loving kindness in making sure that we got to the conference this year! The conference is always packed with tons of useful and informative sessions and is a once per year chance for Lillian to see her friends face to face. Friends who get her, who are like her, who laugh at her jokes, and just giggle with her for no reason! Attending the conference every summer inspires and encourages Lillian to face fears and accomplish goals … As you will read about below.
Oceans of love to all! xoxo
June 29 2018:
We made it! Almost all of us anyway. One suitcase was a flight behind us. One piece of luggage made the flight and one missed it. Hmmmm.
Beautiful Sue Rose Bentivenga met us with a smile and gave us these gorgeous flowers to brighten our room while here.
I’ve been up since 3:00 am PST. I may just pass out after we actually eat. We’ve not had a meal since our cereal at 3:30 this morning.
Yet. Yay we’re here. And. Oh my gosh. My seat mate from Vegas to Baltimore. Just wait. I’ve got to process it all. Then, I’ll share.
June 30 2018:
Thomas and I toured the USS Constellation this morning. Had to come back to the room to cool off. I was dripping more sweat than I have since moving from Mississippi! Holy heck!! I love our dry heat in Nevada!
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After coming back to the the room and cooling down, Thomas and I went to see the USCGC Taney. I’d rather be touring a forest or arboretum, yet, this brings joy to Thomas. So, two more ships tomorrow.
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One more shout out to Sue Rose Bentivenga!!! She and her daughter drove to the airport yesterday evening to pick up the piece of luggage that missed our flight. And then they delivered it to us.
And, a side note … If I had been in charge of driving us in that traffic and the style of driving here, I would have crawled under my seat and cried. We needed a Jersey native driving us through that craziness! Sue was a pro!!
Loving kindness is in the air! Thank you sweet Sue!!! Oceans of gratitude for supporting Lillian too!!! We’re so happy to hear y’all are enjoying it!!
July 1 2018:
Last tour for Thomas and I yesterday. Seven Foot Knoll Lighthouse. I’ve always dreamed of living or staying for a while in a lighthouse. The work of it sounds difficult yet the beauty is amazing. Now. That’s tiny house living!
July 1 2018:
Today with Thomas was the Lightship Chesapeake. I think I’m done stepping out into the million degree sauna. 😜😂
We toured one more after this one. So glad I did this with Thomas! Even though I almost suffocated! 🙃😜
July 1 2018:
Lillian signing books! We are super grateful!!
July 1 2018:
Today with Thomas was the USS Torsk. Last one! I think I’m done stepping out into the million degree sauna. 😜😂
This one tested the ole claustrophobia. I did good. Came close to a panic attack due to the heat, confined space, and so many people ahead of us blocking the way out! This was good for me as I was able to confront it, breathe, drink water, and know that I was okay, and not suffocating! So glad I did this with Thomas! 🙃😜
July 1 2018:
Best friends! Together again! Macy Miller and Lillian. Someone asked if they are twins! They both love to laugh and giggle!
We had dinner with The Miller’s and just look at these two lovelies! The Giggle Duo, indeed! Look how happy they are! Lillian and Macy = Happy to see one another after a year apart!
July 2 2018:
First conference for Jaclyn. She is very excited to meet other people who have an 18p- diagnosis. And! Excited to have one of Lillian’s books!! Thank you to Jaclyn and to Mike Fudala for supporting Lillian. Much gratitude!!!!
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Horrible lighting! Great and wonderful people!Love these Miller folks! Always so kind! And their Macy and my Lillian are The Giggling Duo.
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Lillian just went out to eat with a group of friends. Alone. Like. Without me. FIRST TIME she has joined the self advocates doing anything! YES!!! Hallelujah!!
She typed her order in her phone before leaving so she can show it to the host. I put money in her name badge and texted her instructions for paying her bill after explaining verbally how to pay.
She’s worried. And keeps texting me. Yet, at least she finally took that first step! The hardest one! Wahoo!!
(This post received 242 likes/loves/wows and 142 comments on facebook. Deep gratitude for everyone cheering for Lillian!)
And the below post announcing the success received 121 likes/loves and 31 comments! Thank you everyone!
July 3 2018:
Here’s another first!! Lillian has never participated in the self advocate panel!!! Listening. A first step!! Wahooo!!!!
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Thomas and his buddy Kellan at lunch today. Thomas loves chatting with Kellan.
I’ve had two different people reply to my response of “Thank You” with: “Ah, no worries. We’re family.” Loving kindness is a beautiful thing.
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I’m a wimp. This is how I spent ladies night. A nearly scalding hot soak in the tub followed by a cold water cool down; while Thomas had dinner with his friend. Then, hanging with The Giggling Duo. They think I’m funny.
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18p- Friends
July 4 2018:
Thomas and Alex on the sibling panel. There were about 20 siblings ranging in age from 10 – 35 years old.
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More friends …… After group photos.
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Dinner and Farewell Dance!! What an incredible blessing all of these people are …. to one another ….. and the World!!!!
July 4 2018:
Group photo. Clearly not everyone. Yet, a whole heck of a lot of us!!!! Lillian and I are definitely in there. Hopefully, Thomas is too!
I think the total was around 350. I’m sure The Registry will post official numbers soon. Love these wonderful people! (This is not my photo. I think it was taken by Rick of Positive Exposure or Stacey Gallardo.)
July 5 2018:
One last visit to The Inner Harbor. We didn’t even last an hour out there. Whew!!! 🔥🔥🔥
But. We got to walk down the opposite side this time. And found a wee bit of nature to photograph.
July 5 2018:
Nearly home! YaY!!!
July 6 2018:
Fear of escalators: We’ve always had to use the stairs or elevator when Lillian was with us in the past.
No longer! Lillian rode the escalator on Friday, the 29th, at the Reno-Tahoe Airport! She held tight to me and was worried. Yet, she did it! The ultimate goal is to ride the escalator without me beside her. Wahoooooo!!!!xoxo
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During the Chromosome 18 Conference there’s always an ongoing silent auction and all money stays with The Registry. I usually bid on a couple of items; yet, they quickly surpass my wee budget.
Not this time! I won this clutch bag and tote hand made in Guatemala using recycled materials. I can still feel the excitement in my chest for having won something so full of love, color, and beautiful energy!
The clutch bag can be used alone or thrown in the tote bag so to have handles. It’s just my size purse. Thank you so much Ivette Ruiz for donating this treasure to the auction and for supporting native people in Guatemala!
I also bid on a pair of boldly colored and beautiful oven mitts handmade in Kenya. We were blessed with attendees from Kenya and they donated some beautiful items. Missed out on those beauties, yet all for a good cause!!!
July 7 2018:
Another fear bites the dust. In the past Lillian has chosen to walk throughout the airport attached to my arm. Not the easiest for me while pulling a carry on bag plus her bag.
When we got to the airport in Baltimore readying to leave, I explained I needed her not to hold onto my arm and to just walk beside me.
After sighing, she said “Okay”. And did just that. Throughout the entire Baltimore, Vegas, and Reno airport!
PLUS! This included the HUGEST fear at the airport ….. The PBB. She walked through the passenger boarding bridge NOT attached to me!!! She stepped from the PBB into the airplane NOT attached to me AND walked the aisle of the airplane NOT attached to me!
Hallelujah!! Ahhhhhhh …. Freedom for both of us!!! (Picture from 2016 – Another first! First time catching air for a photo!)
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Do you have a game plan? On the four hour flight from Vegas to Baltimore I sat next to Mark Everest.
For nearly the entire flight we shared about his family – wife, daughter, son, grand daughter -, books he’s written, his company, his workshops and speaking, his hippie friend who lives above Santa Monica. And I shared about the conference, Chromosome 18, my family, Thomas and Lillian, our books, my path.
Then we talked about Stephen Covey, Zig Ziglar, Earl Nightingale, Charlie Tremendous Jones, Wayne Dyer, Deepak Chopra, and some I’m forgetting.
I just read the first 50 pages of his first book which he gifted to me. Quote from the book, “Strength does not come from physical capacity. It comes from an indomitable will.” -Mahatma Gandhi
I shared with him I am most likely the most Woo Woo person at the conference; he said, “You are needed there.” This same comment was repeated to me by someone dear to me on the last night of the conference. Messages it did my heart good to hear!
It’s a wonderful feeling to truly connect with others. I feel we bless one another and are sharing a gift with one another when we do this. Now. That’s what I call a Gameplan!! And, that’s my GamePlan!
July 8 2018:
Okay. Here’s the last one …. For this time around … Thank you to everyone for celebrating in our joy of laying to rest some fears and for having many firsts!!
While in the airports on the way back home, Lillian went into the airport restrooms without me!! We went from the first traveling experiences all those years ago of having to travel with post it notes to cover up the automatic flush sensor, to going in alone!! Yes, Yes, Yes!!!
Much gratitude to our friends and family for celebrating these seemingly small, yet HUGE, accomplishments at 16 years old for Lillian!! Wahoooo!!!
Lillian faced many fears and had many firsts this year at conference. Each year, each conference she makes wonderful progress! Go Lillian Go!!
Not to mention a FIRST of selling and autographing her first published book!! Wahooo!!
July 2 2018:
Lillian just went out to eat with a group of friends. Alone. Like. Without me. FIRST TIME she has joined the self advocates doing anything! YES!!! Hallelujah!!
She typed her order in her phone before leaving so she can show it to the host. I put money in her name badge and texted her instructions for paying her bill after explaining verbally how to pay.
She’s worried. And keeps texting me. Yet, at least she finally took that first step! The hardest one! Wahoo!!
(This post received 242 likes/loves/wows and 142 comments on facebook. Deep gratitude for everyone cheering for Lillian!)
And the below post announcing the success received 121 likes/loves and 31 comments! Thank you everyone!
July 3 2018:
Here’s another first!! Lillian has never participated in the self advocate panel!!! Listening. A first step!! Wahooo!!!!
July 6 2018:
Fear of escalators: We’ve always had to use the stairs or elevator when Lillian was with us in the past.
No longer! Lillian rode the escalator on Friday, the 29th, at the Reno-Tahoe Airport! She held tight to me and was worried. Yet, she did it! The ultimate goal is to ride the escalator without me beside her. Wahoooooo!!!!xoxo
July 7 2018:
Another fear bites the dust. In the past Lillian has chosen to walk throughout the airport attached to my arm. Not the easiest for me while pulling a carry on bag plus her bag.
When we got to the airport in Baltimore readying to leave, I explained I needed her not to hold onto my arm and to just walk beside me.
After sighing, she said “Okay”. And did just that. Throughout the entire Baltimore, Vegas, and Reno airport!
PLUS! This included the HUGEST fear at the airport ….. The PBB. She walked through the passenger boarding bridge NOT attached to me!!! She stepped from the PBB into the airplane NOT attached to me AND walked the aisle of the airplane NOT attached to me!
Hallelujah!! Ahhhhhhh …. Freedom for both of us!!! (Picture from 2016 – Another first! First time catching air for a photo!)
July 8 2018:
Okay. Here’s the last one …. For this time around … Thank you to everyone for celebrating in our joy of laying to rest some fears and for having many firsts!!
While in the airports on the way back home, Lillian went into the airport restrooms without me!! We went from the first traveling experiences all those years ago of having to travel with post it notes to cover up the automatic flush sensor, to going in alone!! Yes, Yes, Yes!!!
Much gratitude to our friends and family for celebrating these seemingly small, yet HUGE, accomplishments at 16 years old for Lillian!! Wahoooo!!!
July 1 2018:
Best friends! Together again! Macy Miller and Lillian. Someone asked if they are twins! They both love to laugh and giggle!
July 1 2018:
We had dinner with The Miller’s and just look at these two lovelies! The Giggle Duo, indeed! Look how happy they are! Lillian and Macy = Happy to see one another after a year apart!
July 3 2018:
July 4 2018: