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 …

How Camilla Feels About It

**THROWBACK POST**

February 28 2013:

One of our sweet Chromosome 18 friends is doing a research project on Chromosome 18 affected individuals and their family for school and asked us to participate. Here’s my contribution … being interviewed regarding how it feels to be a parent to Lillian (who has 18p-)! Go Courtney MacMasters Go! Courtney is sibling to one of our C18 affected friends!

One Way I Listen to Life’s Messages

**THROWBACK POST**

February 10 2016:

The way events line up is so interesting. Yesterday morning I had coffee with Jules Holland and we were talking about living an unfiltered life and experiencing the rawness of life. Later in the day, I wrote an article to be submitted to an online website. An article influenced by our conversation.

I wrote it in the format of a letter …. A letter addressed to a meltdown. Dear Meltdown … Later last night Lillian had a huge meltdown. In the midst of it, I remembered what I had just written and remained calm. Had I not had coffee with Jules, talked about what we talked about, wrote the article when I wrote it, I may have handled the meltdown completely differently …. and not so calmly!! Love, love, love … xoxo

C18 Trip July 2016 #35

 

Can You Get Your Bathwater Ready

January 19 2017:

It’s one of those “Lillian miracle” posts again ….

Lillian and Camilla October 2016 Date Day 10.18.16 #8

Last night Lillian ran her own bathwater, turning the faucet on and off by herself (BIG deal!), readied the bathroom, pulling the heater out and plugging it in, and had a bath without calling me in to help with anything (BIG deal!!).

She did send a text in the beginning saying she couldn’t get the water to turn on …. yet, she figured it out before I even responded! At FIFTEEN years old! Hallelujah!! I was only needed for ONE task … getting her hair up. One day I will post that she is able to take care of that hair of hers!

When you take your shower or bath today, perhaps you may want to release all other thoughts and focus on the miracle happening in that moment. xoxo