A Truly Wonderful Adventure – Where Would You Fly Review

Oh wow! What a wonderful world Lillian transported me to. What a beautiful soul she is!
I loved the beauty, the innocence, the depth and the magic of Lillian Darnell’s writing. This was truly a wonderful adventure into her amazing world and I enjoyed reading every story and every quote. Such beautiful quotes that really touched my heart. – Jennifer Jansen

For more information about Where Would You Fly, go here …

http://www.WhereWouldYouFly.com

Blessings,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

“Words of Alchemy”, published December 2019, is a free-verse poetry memoir covering the last 6 years of my life. The poetry of nature, the poetry of healing, the poetry of appreciation, the poetry of love, in one beautiful book.

Amazing news! My 20 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” was published January 2018. Learn more and order here

Wonderfully exciting news! My 16 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

Get to Know Me: Bizarre Happenings in Nevada

I’m a member of an author/book reader facebook group, and the admins ask great questions. I decided to turn some of the questions into a “get to know me” series. I would also love to hear your answers to the questions posed in the series. Thanks Helen for asking such fun questions!

What happens in your country/town/area regularly that people in most countries would find strange or bizarre?

I don’t support or condone it, but there’s a yearly Camel Race in Virginia City.
Nevada is also the home of Burning Man; which I’m sure some think is strange and bizarre. I’ve never been as I’m not into suffocating in the dry heat of the desert, with being devoured by the sand on top of it. We do get the benefit of receiving some amazing art pieces that are put on display throughout Reno, after the event.

What about you?

Blessings,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

“Words of Alchemy”, published December 2019, is a free-verse poetry memoir covering the last 6 years of my life. The poetry of nature, the poetry of healing, the poetry of appreciation, the poetry of love, in one beautiful book.

Amazing news! My 20 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” was published January 2018. Learn more and order here

Wonderfully exciting news! My 16 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

Throwback Post: Reblog: Ninety Minutes of Pure Bliss With New Additions

**THROWBACK POST**

May 21 2021

Have you ever had your face, jaw, and ears massaged? I highly recommend it. Home from 90 minutes of pure bliss by way of a massage. I shall now melt into the kitchen to make dinner. I’d rather melt into a hot shower and soak, followed by melting into the couch. But that will have to wait until after dinner.

…. And scalp, and fingers, and toes, and butt …. That was such a glorious massage ….

June 3 2021

Lillian and I are just back from a walk. We found a ping pong table! I love ping pong! It’s been years since I’ve played. Bocce ball court is finished, too. And I took a photo of the chess table that Thomas and I discovered Tuesday night.

Go here to read more …

Ninety Minutes of Pure Bliss With New Additions

 

Celebrating the 52nd Birthday – Camilla Downs

On February 26, 2022 I turned 52 years old. I seem to be behind in many non-urgent tasks these days. My body decided to get my attention once I hit 50, along with being extremely exhausted. I’ve had my hands full addressing some health issues, along with addressing urgent or deadline intense matters for Thomas and Lillian.

We had a low-key, mild celebration. The Romano Duo and my brother came to our place, with Frank kicking things off by making me a couple of virgin bloody marys. We had lunch together, opened gifts, and then enjoyed a vegan, strawberry rhubarb pie.

We also celebrated a win for Lillian. She has pretty much conquered her fear of cats, so we lit a candle for her to blow out in celebration. There’s something to be said for exposure therapy. It absolutely worked magic when Thomas finally convinced me to allow him to adopt a cat. Chad Basil the First came into our lives in December 2021 for Thomas to care for and have as emotional support. Lillian has slowly warmed up to him, at about the same pace as Basil has taken to open up to us.

It’s been all I can do to keep up with these matters, with my precious walks growing less frequent. I’m hopeful that I’ll be able to resume the frequency soon. For a while now, I’ve not been posting as much on social media as I have in the past. I’ve also not written anything for a couple of years. I’ve been, and am, numb and exhausted. I am in the midst of addressing the health issues, with hopes that this helps to lift my spirits.

I have just completed four weeks of physical therapy for my neck, with four more to go. This being an initial step before having an MRI. I’m seeing a GI doctor to address gut issues. I’ve done a SIBO test, and am awaiting the results. I’ve had a full gut ultrasound which indicated a dilated (enlarged) bile duct. I’m now scheduled for an MRI of my pancreas, gallbladder, and all ducts to determine the cause of the dilated bile duct. I’m also scheduled for a colonoscopy and endoscopy in May. The colonoscopy is just routine as I’ve never had one. But the GI doctor added the endoscopy to see if we can determine the cause of some additional pain and discomfort. Additionally, I’m scheduled with a cardiologist to have an echocardiogram performed.

We continue to have many beautiful and exciting events and wins come into our life, too. I’ve posted about those as they happen. I’ve always been one to keep the unlovely moments of life to myself until I’ve had time to process it and/or I’ve determined the solution. This is the Way (for me). I love The Mandalorian, by the way!

Team TLC is looking forward to attending the Chromosome 18 Family Conference this summer in San Antonio, after it has been held virtually the past two years. Our future is bright, with many lovely moments, trips, and celebrations on the horizon. The time I currently find myself seems to be a grease-the-wheel, fill my cup moment as we prepare for the exciting times that await us.

I share with all of you, as that’s who I am, and who you know me to be. This is my path, to be authentic, vulnerable, and to let others know they are not alone. xoxo

Blessings,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

“Words of Alchemy”, published December 2019, is a free-verse poetry memoir covering the last 6 years of my life. The poetry of nature, the poetry of healing, the poetry of appreciation, the poetry of love, in one beautiful book.

Amazing news! My 20 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” was published January 2018. Learn more and order here

Wonderfully exciting news! My 16 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

Throwback Post: Reblog: Lillian and Camilla May 2021 Date Day

**THROWBACK POST**

May 25 2021

Lillian and Camilla May 2021 Date Day

It was a momentous date day. First time for Lillian to go inside of anyplace in just over a year. She was excited. Clothes shopping for our first stop.

    

Part 2 through I lost count, as we made so many stops, I’m delirious.

Fries and lemonade at Noble Pie Parlor. Then to pick up dessert. Watermelon macaroon for Lillian, ginger rose dark chocolate for me.

Barnes & Noble, Michaels, and stopping to gaze at the full moon on the way home. (Psst …. I do not like shopping. Drains every inch of energy out of me. I shall crawl into bed, and pass out shortly.)

To see more …

Lillian and Camilla May 2021 Date Day

Throwback Post: Reblog: Building a Computer – Assistant to Thomas Darnell

**THROWBACK POST**
Building a Computer – Assistant to Thomas Darnell - featured image

May 18 2021

For the past 5 months I’ve been buying parts from a list that Thomas created, 2-3 every month. Finally bought the remaining components last week, with the monitor arriving yesterday.

For the past day and a half I’ve been “Assistant to Thomas Darnell” as he built it. It is all finished now! Didn’t have “helping build a computer” on my 2021 Bingo card.

“It’s like a LEGO set with tiny, delicate parts.” – he says as he’s putting it together …

I’m so happy for Thomas. His computer has barely been limping along for the past 6 months.

   

To see more, go here …

Building a Computer – Assistant to Thomas Darnell

Throwback Post: Insurance and Medicaid Madness

**THROWBACK POST**

April 2021


(Photo from Pexels)

It’s been an intense week of advocating, buffered with attending two Zoom poetry readings, getting my first vaccine shot, and April date day with Lillian. The poetry readings were great fun, and our date day was beautiful!

Read on if you’re interested in some venting about insurance and advocating. Otherwise, hope you’re having a GREAT Saturday!

What I would like to know …

Why provide medicaid to folks if barely anyone takes it? (Also, looking at why they don’t take it, very poor reimbursement as opposed to other insurance, way too many hoops to jump through, many of them being repetitive, and need to have a staff of 2 or 3 completely dedicated to dealing with medicaid.)

Why forbid people who have this worthless insurance from getting their own insurance, which I quality for, but the insurance agent cannot proceed (due to us having this worthless insurance), as she and I will get fined?

Why forbid people who have this worthless insurance from self-paying providers who don’t take this worthless insurance? (I have a specialist who is seeing me for free because I cannot pay her as she risks going against the rules, and I risk losing this worthless insurance. I was willing to pay her, but she cannot accept it. She is signing up to take this worthless insurance, but it is going to take a FULL YEAR to process.)

I just received a dermatologist referral for Thomas. We live in Reno. This referral is for Las Vegas, EIGHT hours south of here. I had already found someone here, but it was going to be a hassle with two appointments required. However, since the place in Vegas offers tele-health, we will go ahead with them. I’ll keep the other appointment for now, as we see how the Vegas place goes. (March 2022 Update: By the time I called to schedule for his third follow-up they had discontinued tele-health visits. So we just had to wing it with the knowing how to proceed.)

Also from Thomas’s and (used to be) Lillian’s pediatrician’s office: Referrals to places I do not want to use. I’ve been doing this for 19 years, I can pretty much tell if something is going to be a good fit. I spend weeks emailing and calling specialists, therapists, and doctors to find someone who takes the worthless insurance and who doesn’t have a two year waiting period.

Also, learning two weeks ago that Lillian’s pediatrician will no longer be her doctor. In the middle of a pandemic. I’ve got to find a new doctor, skilled at working with special needs folks, and once finding this person, educate them about Lillian. In the middle of a pandemic. Why couldn’t the office have sent something reminding me that Lillian’s time there was coming to an end? Why won’t they help us transition?

Remember in December when I was searching for a therapist and a psychologist (for Autism and IQ testing) for Thomas? Thomas has had two sessions with the therapist I found, and he likes her (had to wait two months for an opening.) This person is not where his doctor’s office was referring us. I found her on my own by calling and emailing folks from a google search. He has the Autism screening in August with another person I found – not where the pediatrician’s office referred us. I found her on my own).

I had put Thomas on another waiting list for both of these items. I phoned there yesterday to see if Lillian could take his slots on the waiting list, as these need addressed with her also. Success! (Actually, the person I spoke with in December is no longer there, and failed to put Thomas on the list. I spoke with the office manager and she added Lillian where Thomas would have been on the list.) Updated Note: Before Lillian left her pediatrician, they referred us to a neuropsychologist in Las Vegas. This is a 4 day appointment! Just nuts!

Thank you to my contact at the Nevada Governor’s Council on Developmental Disabilities for letting me share these frustrations with her, passing contact information to me, and just being there for me to vent, at times feeling sorry for myself.

Thank you to her also as I needed to know how I can get Lillian vaccinated without her wearing a mask. We are talking about someone who has an intellectual disability who you cannot reason with, who is not rational about the importance of mask wearing. Thomas and I have worn masks this entire time, and have not gone inside anyplace, other than the grocery store, and to pick up to-go food from restaurants. Lillian has not been inside a place for over a year and a half. Lillian’s “not” pediatrician’s office was no help, and SRC (Sierra Regional Center) was no help. I now have a name and contact number for when Lillian is ready.

I’ve joined a local special needs parenting facebook group in order to share and get feedback. Just did that Friday, and am taking the weekend off from advocating! Back at it next week.

March 2022 Update: Nearly a year later. Thomas and Lillian have both had a neuropsychological evaluation. I’m scheduled for an evaluation in October 2022 with the same person who did Thomas’s evaluation. I’m now searching for a pediatric psychiatrist that takes Medicaid (oh, joy!!).

We gave up on a local dermatologist for Thomas, and will revisit in the future if need be. Lillian has a new doctor that I found on my own, without going through Medicaid. I switched to her, also. Thomas may switch to her, too. 

Blessings,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

“Words of Alchemy”, published December 2019, is a free-verse poetry memoir covering the last 6 years of my life. The poetry of nature, the poetry of healing, the poetry of appreciation, the poetry of love, in one beautiful book.

Amazing news! My 20 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” was published January 2018. Learn more and order here

Wonderfully exciting news! My 16 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

Get to Know Me: The Worst Thing You Ever Did As a Child

I’m a member of an author/book reader facebook group, and the admins ask great questions. I decided to turn some of the questions into a “get to know me” series. I would also love to hear your answers to the questions posed in the series. Thanks Helen for asking such fun questions!

What’s the worst thing you ever did as a child and what was your punishment?

The worst things I did, were done to myself.

When I was 5 or 6, I stuck a lil red berry up my nose. Why? I have no idea. Punishment: I stuck a freakin’ berry up my nose! Hahaha!

When I was 7 or 8, I got chewing gum stuck in my very long hair. My mom was so mad, she just cut all my hair off, instead of trying to get it out.

What about you?

Blessings,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

“Words of Alchemy”, published December 2019, is a free-verse poetry memoir covering the last 6 years of my life. The poetry of nature, the poetry of healing, the poetry of appreciation, the poetry of love, in one beautiful book.

Amazing news! My 20 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” was published January 2018. Learn more and order here

Wonderfully exciting news! My 16 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

Latest News: The Letters We Wrote Five Years Ago

On November 1 2021, I mailed the letters we wrote to ourselves in 2016, five years ago. We wrote them, sealed them, and I hid them in my fireproof safe box. I put a note on my calendar for 5 years out to mail them. I absolutely did not remember what I had written!

This was such a moving experience. On November 3rd, we received the letters we wrote to our future selves five years ago, November 2016. Thank you 2016 Camilla. ❤️❤️❤️ Thomas likes his, too. Lillian likes the advice she gave herself.

Blessings,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

“Words of Alchemy”, published December 2019, is a free-verse poetry memoir covering the last 6 years of my life. The poetry of nature, the poetry of healing, the poetry of appreciation, the poetry of love, in one beautiful book.

Amazing news! My 20 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” was published January 2018. Learn more and order here

Wonderfully exciting news! My 16 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

 

Get to Know Me: The Soundtrack of My Life

I’m a member of an author/book reader facebook group, and the admins ask great questions. I decided to turn some of the questions into a “get to know me” series. I would also love to hear your answers to the questions posed in the series. Thanks Helen for asking such fun questions!

Which three songs would be the first picks in the soundtrack of your life – not necessarily your favourites but the most relevant.

My tastes in music are all over the place, depending on my mood, and what I’m doing, whether I’m driving, writing, or dancing. 😂

However, if we’re calling it The Soundtrack of Camilla’s Life, top 7 would be (one for each decade). Each to represent what that decade meant to/for me. I had to do this quick. If I put too much thought into it, we’d have several soundtracks!

1970: We Are Family by Sister Sledge

1980: Come on Eileen by Dexys Midnight Runners

1990: Girls Just Want To Have by Cyndi Lauper

2000: Tainted Love by Soft Cell

2010: I Will Survive by Gloria Gaynor

2020 (so far): I’m Coming Out by Diana Ross

All Decades: Born This Way by Lady Gaga

What about you?

Blessings,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

“Words of Alchemy”, published December 2019, is a free-verse poetry memoir covering the last 6 years of my life. The poetry of nature, the poetry of healing, the poetry of appreciation, the poetry of love, in one beautiful book.

Amazing news! My 20 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” was published January 2018. Learn more and order here

Wonderfully exciting news! My 16 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.