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

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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

What if Rainbows Were Magical by Lillian Darnell

March 20 2018:

Lillian is truly blossoming into and claiming her role as a writer. She has taken to catching onto phrases, writing them down, and writing a story to match at a later time. Here’s one of the latest … xoxo

What if Rainbows Were Magical?

(Last week, I saw a rainbow on me through a prism and I wondered about what would happen if rainbows could heal aches and pains. So I came up with this story you are about to read.)

Once long ago, a little girl had scratched her arm and her guardian angel came to her and said, “See this rainbow? If you touch your arm to the rainbow, it will call my presence into the rainbow and heal you.”

So the little girl touched her arm to the rainbow and to her amazement, she saw a beautiful glow coming from the rainbow and the glow was on her arm where the scratch had been.

Many years passed and …. Go below to read more

What If Rainbows Were Magical?

Proofing the Proof Book – Done – Where Would You Fly

December 27 2017:

Just finished the checklist and review for the proof! There are two handfuls of minor issues to address. Once addressed, we are done!! xoxo

Proofing Where Would You Fly Book 12.27.17

Just seeing her writings in book form is a success for me. What a process creating a book is when doing it all oneself (except for the hard work our angel book designer has put into it)! I really enjoy the creation process and can’t wait to get that first shipment!!

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Our goal is to pre-sell 50 books. We’ve sold 40! Almost there! If you’d like to learn more about the book, go here … http://www.LillianDarnell.com/author … Oceans of gratitude!

Reaching the Goal – Where Would You Fly

December 9 2017:

After having one of her phantom-who-knows-why throwing up nights … It was great news for Lillian this morning to see we have 31 books pre-ordered so far!

Our goal is 50 – Look how close we are! Oceans of gratitude and love to everyone who has shared, commented, or purchased … xoxo

Lillian in Sun Fall Break 2015

Here’s the back of book blurb:

Welcome to the radiant imagination of Lillian Darnell, a wonderful and unique human being, the kind who comes around only once in every 56,000 births, as she is missing the short arm of her 18th chromosome.

Leave this reality behind and enter enchanted lands awash in mysteries, happy endings, adventures, and inspiration. Come within and discover heartwarming and beautiful tales, woven with love and magic, brought forth from the imagination of a young woman with a different perspective. Lose yourself in wondrous adventures as you follow courageous, enchanting characters, kind animals and plant life, and graceful Mother Nature.

The delightful tales, legends, and poems within these pages were written by Lillian Darnell between the ages of four and fifteen. The stories and poems are mostly edited for spelling and grammar, yet the bulk of the stories remain as she originally wrote and published them to include a few grammatical errors and made up words.

Will a girls dream of becoming a princess come true?

What does love have to do with rainbows and why do we sometimes see double rainbows?

What do roses have to do with fairies and why don’t we see fairies during the day?

How can sad, mischievous, fearful animals help humans feel emotions?

How did the world come to have color?

What really happens in a day of the life of a young whale who lives in the Wooden Ocean?

Why should you never sleep with bears?

“You can’t help but feel happy and be inspired while reading this book. Lillian’s stories jump straight out of her heart and onto the pages in an authentic, innocent, and loving way. The world needs more positivity and happiness and her stories are bursting with both. Thank you Lillian!” -G. Brian Benson – Award-winning and best-selling author, actor and TEDx speaker.

“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

Where Would You Fly Updated Cover 9.2017

Pushing the Cart and Pulling Holds – Volunteering at the Library

November 16 2017:

There she is …. On our way to pull holds! She has taken over pushing the cart. Oh, and see the art gallery in the background? That’s where Team TLC will have our family art showing in spring 2018.

Thomas will have photos from Biggest Little Photographer, Lillian will have her artwork, and I’ll have perhaps my photos paired with poetry.

Lillian Pushing Cart at Library 11.16.17

The Unexpected Leads to Meltdown

November 10 2017:

The Unexpected: I had a service request for a slow draining tub with a note to call me first before entering. In the past they have always called first. This time. They didn’t.

I was out for walk and when I got back I ran into the maintenance guy headed away from our place. Lillian did not let him inside so I invited him to come inside with me.

After he left, a huge meltdown ensued that took Lillian two hours to recover from. She was not expecting this and it threw her schedule and morning out of whack.

I am so incredibly thankful for the path I have been led. The path of meditation, mindfulness, immersing in nature, emotional connection, Reiki, and now, EFT – tapping. Lillian will be one of my next tapping clients! HA!

It is imperative that I meet her volatile outburst with the opposite. I’m not able to do that every time, yet, most times I am able to hold a space of peace and calm. xoxo

Little Washoe Lake Team TLC 10.11.15 #1

I think there are quite a few 18p- beauties that have difficulties with this. Yes, it takes so much practice and they are here to be a mirror for us when we aren’t walking our talk, for sure. I try to always let them know I am not handling a situation as I would like to handle it so they know that even I don’t agree with how I’m handling it, but my humanness has taken over! HA!

 

Wee Respite and Independence for Lillian

November 8 2017:

For the past month or so Lillian has been going to the lodge once a week and spending solo time. I walk over with her, and she walks back alone. She stays anywhere from 1-3 hours.

I’m so grateful for this wee respite! And grateful she’s got somewhere close to go and practice being independent.

Text Messaging with Lillian 11.8.17

It’s semi-private … only people who live in the complex would be there. Has a coffee/hot chocolate/tea room, fireplace, pool table, big screen televisions, very small 12 person theater, and some comfy chairs and tables. The complex office is inside also.

Lillian stays in one spot and so far has just been using her electronics. It’s a start. Hopefully, she’ll get comfortable enough to take a book over or some artwork.

I think the next step would be dropping her off at the library for a bit. I want her to get used to communicating with people she does not know and who are going to have a difficult time understanding her spoken word. She has got to figure out how she wants to communicate with people when I’m not there (and not just be okay with them misunderstanding and her giving up.)

Round and Round With Ridiculousness – Health Insurance Companies

August 3 2017:

“Those people at the insurance company are a fool’s behind.” -Lillian Darnell (I have no idea what a fool’s behind is, but in this case I’m guessing it’s not a good thing.)

Lillian’s craniosacral therapist left a message today that we need to cancel Lillian’s Monday appointment as Anthem Blue Cross has decided they will not pay for more sessions.

She’s ONLY been going for about 2 years now and looks forward to each monthly session for the relief it provides. It’s for pain management and they have been paying all this time (with disabled medicaid as back up).

Her amazing therapist only called as a courtesy so that we don’t incur a bill and to give her office time to dispute with Anthem. So grateful for her and the staff at the Northern Nevada Medical office.

As a side note, I had a lengthy conversation with a chromosome 18 dad at the conference who works for Blue Cross Blue Shield. I did not know there is a difference between Anthem and the Blue Cross for which he works. Anthem is for profit and Blue Cross Blue Shield is non-profit.

He wanted to help me so badly with an issue I gave up on with Anthem. Due to a mistake they overcharged me by $50 about 2 years ago. I tried for about a year to get the money back and eventually gave up. I have no patience in talking with the people who answer the phone.

They also have a flaw in their online system as I cannot register Lillian for an online account to pay her bill or find out which dentists take her insurance. One must be 18 years of age. Well, she’s not, but she has her own policy in her own name (grandfathered in since she already had the policy). No one seems to care about this glitch.

I am so thankful that we hardly ever go to the doctor and my heart aches for my C18 friends who go round and round on a consistent basis with insurance companies. Life is too fleeting and we should not have to worry and fuss with this … Sending so much love to all who have to go round and round for ridiculousness … xoxoxoxo

**Update** August 26, 2017:

Lillian’s craniosacral therapist had a peer review with someone from Anthem. It happened so fast I didn’t have time to get supportive documentation to her. She went round and round with them and they would only give her one more appointment with us. They said that Lillian is not getting better so these visits aren’t doing her any good ….

Next step is checking with the Research Center to see if there have been any research studies done regarding chronic pain and 18p- … Round and Round …