Flying to Tennessee and Life is a Fairy Tale

December 19 2018:

Look out Tennessee!!! Where Would You Fly is flying your way!! She’s magical and she sprinkles fairy dust all along way! 💚🧚‍♀️ 🧚🏼‍♂️ 💙

“Life itself is the most wonderful fairy tale.” -Hans Christian Andersen …. from the book, “Where Would You Fly” by Lillian Darnell

Go here … Where Would You Fly … to buy a copy of Lillian’s book. Thanks! xoxo

She is Thrilled to Be Making It

December 14 2018:

Gerry, the wonderful lady we met at the Barnes & Noble book signing last month, is super thrilled to be making a quilt using Lillian’s Rainbow of Emotions!

She fell in love with the artwork and kept commenting how great it would look as a quilt. The thought finally occurred to me to ask her if she’d like to make one if we had interest from someone in having one.

Well, this lovely 3 X 3 quilt, once made, will be headed to Houston, Texas to adorn a studio wall!! Yee-Haw!! xoxo

Would you like to have a 3 X 3 quilt to adorn your wall? Comment here or send a message to Camilla Downs @ gmail . com … xoxo

 

Sometimes I See People Staring At Me

November 12 2018:

“Sometimes I see people staring at me. I can see in their eyes that it’s a ‘you’re crazy’ look.” – Lillian …

I asked her if this bothers her? Yes, it does. …. (I told her they must be staring because she is so beautiful … 😍😃)

In the past when I’ve noticed others staring at Lillian, I ask them if I can help them and ask if they have any questions or if they are curious about Lillian. I also let them know it’s unsettling for another to be stared at by someone.

I will be kind. Yet, I am human and I am also Lillian’s mom and protector. I do have my limits. I told Lillian to let me know the next time it happens so that I can “help” the one staring.

People stare at me often too. I have no idea why. I have finally reached a point where I can mostly not be bothered by others actions and words. Yet, I also just don’t give a pluck. 😂🤣😜And, there again, maybe I have lettuce in my teeth or my clothes are on inside out … Hahaha!! xoxo

I posted this on facebook on November 12th and thought I’d share some of my response to friend’s comments ….

I’m sure most people don’t even realize they are doing it. Yet, it digs at one’s heart when one’s offspring is bothered by it enough to say something … more than once. I also told her that she could ask them why they are staring if she felt like it.

I have had a child ask me “What’s wrong with her?”, so since they were a child, I was able to explain it all to them. However, having an adult say that would most likely put me past my limit! I’m so crazy myself, and having a wild imagination, I would have them thinking they need to seek another planet on which to live … xoxo … And, then again, I may just start dancing. That would really freak em out.

Thomas asks me sometimes why I’m staring at him. I’m not. I’m just deep in thought and looking in his direction. I think for the most part this is what is happening. Except for the occasional times when one can sense from the energy of the other; that they are being judgmental or having negative thoughts.

I have to say that my split second initial response is a firm-smart-ass-full-of-profanity’s-tell-them- off comment. Yet, I know this gets society no where having this response. So, I tell them what I think, yet, in the kindest way possible.

I get lost in thought at times and I’m sure it seems as if I’m staring at someone when I’m actually just dazed and confused!! HA!

Thankfully, no one has been rude to her, except for when she used to be in public school. Fortunately, I don’t think it bothers her as much as it could. Perhaps it has helped a bit when she or Thomas tell me I’m weird or crazy and I respond with, “Thank you. Thank you for noticing!” HeeHeeHee!

Where Would You Fly Flew to Barnes & Noble in Reno Nevada

November 10 2018:

Where Would You Fly flew to Barnes & Noble!! 💙🧚🏼‍♂️ 🧚🏼‍♂️ 💚  And Lillian and I joined the fun! 💙🧚🏼‍♂️🧚🏼‍♂️💚

Want your own copy of “Where Would You Fly”? Go here! xoxo

Decisions As We Approach Lillian Darnell Reaching 18 Years of Age – Nevada

September 30 2018:

Friends with special needs adult children … Lillian is 17 years old now and it’s time to decide about guardianship. I’ll need to decide whether to do a full guardianship, or just financial, or just medical or both or alternatives.

**Nevada friends have shared about Supported Decision making – About to educate myself on that!!** So … input on any and all routes friends have gone is welcome! Lillian is capable of making decisions. Although, she has a difficult time with some decisions; with much anxiety.

Would you mind sharing your thoughts and experiences with this? I’m interested in hearing from all, especially friends in the state of Nevada since state laws can be different.

Did you have your local Regional Center (state organization that provides services for special needs kids) to assist with this by giving you information and/or conducting a psychological evaluation?

Thank you so very much for your input!! xoxo

Lillian is not medically fragile and we hardly ever go to the doctor. She hasn’t been in years. Her difficulties are her ability to articulate her speech, and emotional and mental issues. She does have difficulty making some decisions. She almost always ask for my input; which I give to her. She still has some difficulties after that, yet, I usually will try a bit more to get her to make the decision. If she’s not able to do it, I’ll make the decision for her (which, sometimes will snap her into being firm with her own decision)!

The 2018 Chromosome 18 Conference – Baltimore, Maryland

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.

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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!!

Chromosome 18 Conference 2018 Baltimore Maryland 6.30.18 #36

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!

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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! 🙃😜

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July 1 2018:

Lillian signing books! We are super grateful!!

Chromosome 18 Conference 2018 Baltimore Maryland 7.1.18 #60 Lillian signing books

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! 🙃😜

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July 1 2018:

Best friends! Together again! Macy Miller and Lillian. Someone asked if they are twins! They both love to laugh and giggle!

Chromosome 18 Conference 2018 Baltimore Maryland 7.1.18 #71 Macy and Lillian

Chromosome 18 Conference 2018 Baltimore Maryland 7.1.18 #81 Macy and Lillian

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!!!!

Chromosome 18 Conference 2018 Baltimore Maryland 7.2.18 #82 Jaclyn and Lillian with Where Would You Fly Book

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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.

Chromosome 18 Conference 2018 Baltimore Maryland 7.2.18 #83

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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!!

Lillian and Camilla May 2018 Date Day 5.22.18 #9

(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!

Chromosome 18 Conference 2018 Baltimore Maryland 7.2.18 #84

July 3 2018:

Here’s another first!! Lillian has never participated in the self advocate panel!!! Listening. A first step!! Wahooo!!!!

Chromosome 18 Conference 2018 Baltimore Maryland 7.3.18 #85 Lillian text about self advocate panel

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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.

Chromosome 18 Conference 2018 Baltimore Maryland 7.3.18 #86 Thomas & Kellan

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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.

Chromosome 18 Conference 2018 Baltimore Maryland 7.3.18 #87 Camilla Ladies Night

Chromosome 18 Conference 2018 Baltimore Maryland 7.3.18 #88 Camilla Ladies Night and Macy and Lillian

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18p- Friends

Chromosome 18 Conference 2018 Baltimore Maryland 7.3.18 #89 18p- group Chromosome 18 Conference 2018 Baltimore Maryland 7.3.18 #90 18p- group

July 4 2018:

Thomas and Alex on the sibling panel. There were about 20 siblings ranging in age from 10 – 35 years old.

Chromosome 18 Conference 2018 Baltimore Maryland 7.4.18 #91

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More friends …… After group photos.

Chromosome 18 Conference 2018 Baltimore Maryland 7.4.18 #92

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Dinner and Farewell Dance!! What an incredible blessing all of these people are …. to one another ….. and the World!!!!

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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.)

Chromosome 18 Conference 2018 Baltimore Maryland 7.4.18 #127 Group Photo

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.

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July 5 2018:

Nearly home! YaY!!!

Chromosome 18 Conference 2018 Baltimore Maryland 7.5.18 #143

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

Lillian Rode the Escalator Post 7.6.18

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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!!!

Clutch & Tote Bag Won at C18 Conference 7.6.18 #1 Clutch & Tote Bag Won at C18 Conference 7.6.18 #2 Clutch & Tote Bag Won at C18 Conference 7.6.18 #3

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!)

Damonte Ranch Walk 9.13.16 #4

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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!

Game Plane Book Mark Everest Airplane to C18 Conference 7.7.18

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 South Valleys Library 9.13.17

 

She Did It! The 2018 Chromosome Conference – Baltimore Maryland

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!!

Chromosome 18 Conference 2018 Baltimore Maryland 7.1.18 #60 Lillian signing books

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!!

Lillian and Camilla May 2018 Date Day 5.22.18 #9

(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!

Chromosome 18 Conference 2018 Baltimore Maryland 7.2.18 #84

July 3 2018:

Here’s another first!! Lillian has never participated in the self advocate panel!!! Listening. A first step!! Wahooo!!!!

Chromosome 18 Conference 2018 Baltimore Maryland 7.3.18 #85 Lillian text about self advocate panel

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

Lillian Rode the Escalator Post 7.6.18

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!)

Damonte Ranch Walk 9.13.16 #4

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 South Valleys Library 9.13.17