The Flame of Advocacy – Camilla Downs

August 15 2019:

I know I am not alone in hosting in my heart a flame of advocacy for our children, and definitely our children with differences who cannot advocate for themselves.

My motto of “Love is the answer” was put to a true test this morning. In May I followed all directions, completed all paperwork for a service for Lillian; which was approved and we have used for two months now.

I was told a few days ago that since they did not process the paperwork properly (and actually lost the first set of documents I submitted, therefore making it overdue and Lillian not eligible) that Lillian would be put on the wait list.

I patiently waited for a reason for this from our contact person and only received, “nothing can be done”. So I asked for the supervisor’s name and email address. I sent an email yesterday to the supervisor with a time line of all conversations and emails showing that everything had been turned in and I can’t possibly control what someone does with it after it leaves my hands.

I received an email back this morning that blew me off and said that nothing could be done. After receiving this email, you bet there was huge anger rising. I absolutely had to concentrate on taking long deep breaths to create calm. HA!

I emailed back asking for this person’s supervisor and email address. I immediately received two phone calls and two voice mails and an email as the person I emailed thought that I was someone else, so she did not have the same tone and response had she had if she had known I was Lillian’s mom. I was okay with that since I know people make mistakes.

And, in that email where she said she was very sorry for thinking I was someone else, she also said she is asking administration to reconsider since everything was turned in and they lost it or misplaced it. And that we should not bear the cost of their mistake.

Well, thank you Ms. Supervisor. That is precisely what I thought too. I am so relieved you agree with me. I thanked her very much for stepping in and helping to right the situation. We shall see what they say. I may be continuing up the supervisor ladder … If it must be done, I’ll do it.

I am not posting this for sympathy. I am posting for solidarity, for strength, for courage … and just because that’s what I do. I share. Here’s to all who advocate for those who cannot. Whether they be human or animal.

The Salt Flats – Incredibly Gorgeous and Magical

Another I felt deserved it’s own post … The Salt Flats in Utah are incredibly gorgeous and magical feeling!

July 28 2019:

After leaving Salt Lake City yesterday, we stopped by the salt flats for a quick look. I love standing and walking barefoot on the salt. It is quite crunchy in some spots, but the bottom of my feet felt still feel oh so soft. The bottom of my feet felt so good last night. Ahhhhh ….

Check out the cool photo Lillian took of the rest of us. Optical illusion!!

The Wild and Crazy Journey to the 2019 Chromosome 18 Family Conference in Colorado Springs

The 2019 Chromosome 18 Family Conference … A crazy ass journey by car from Reno, Nevada to Provo, Utah to Colorado Springs. And, then back again from Colorado Springs to Salt Lake City to Reno. 

I’ve posted these as I posted them on facebook. Definitely not in order of how things happened.

Despite some challenges and a horrid sickness, we had a GREAT time overall. Looking forward to next year in San Antonio! 

July 18 2019:

We have arrived in Springville, Utah! Our halfway point! Smooth driving until Salt Lake City. Spent an hour in rush hour traffic plus an accident. Thankfully arrived to a beautifully clean and spacious room!

It’s funny how being stuck in a car together for about 9 hours brings out the crazy, the silly, the unkind, and the sweet! 😜😃😂

Have a pounding headache and oh so tired, yet deeply grateful and appreciative!! Thank you to all who are cheering, supporting, praying, and sharing the fundraiser!

Going to find some food and then come back and settle in for the night. Gotta get more sleep tonight.

July 18 2019:

Two firsts so far … and we just got started!!! She had salt AND pepper on her fries. And the big one!!! Drank her juice and water from an open glass without a lid!!! Still needs a straw as she doesn’t have lip closure. Yet, her coordination in the past would have her spilling when trying to drink from an open glass. Yay!! …. I’m going to bed now!!!!

July 19 2019:

We finally made it to Colorado Springs! Got here about 6:45. Gonna be totally honest! This second leg was pure hell! It took 3 extra hours due to so many different areas of traffic that had come to a full stop and traffic barely moving.

I was freaking delirious for the last four hours! These two pictures are from a rest area we had to stop at because the car was overheating. Just past Glenwood Springs traffic came to a full stop for 10 minutes at a time. Thank you Thomas for being absolutely crazy silly with me so I could keep going.

By the time we got here, got the car unloaded and everything in the room, the already bad headache became excruciating. Nearly threw up. Had an almost scalding hot shower, sobbed my eyeballs out as the hot water washed it all away, and felt a wee bit better afterwards. These unhappy teeth are kicking my a**! So ready for bed!! We’re here!!! Yay!!!

July 20 2019:

I was so tired last night that I didn’t post the view from our room. Ahhhh ….. Beautiful …. 💙💙💙

July 21 2019:

The Giggling Duo together again. Best friends! Love them!

July 21 2019:

This place brought such peace to my heart and soul. My eyes pooled with liquid awe and gratitude as I basked in the nurturing energies. Deeply moving. 🙏🏼💞

Thomas and I visited Garden of the Gods this afternoon. Thomas says, “I can see why it’s called Garden of the Gods”. Yes, Thomas. I could see it and feel it.

July 22 2019:

More firsts for Lillian …. She told the waitress her order on Friday night. I usually order for her!!! She did it again last night. The person taking our order on Friday night understood her, but not the person last night. I’ve told her she could use her phone as backup if they don’t understand. 💞💞💞

The second: She lost her room key yesterday. I explained I was busy and the next time she was in the lobby, to request another from the front desk. She used her phone to ask for one and it went smoothly. 🎉🎉🎉

And just because I cannot resist posting another photo of The Giggling Duo!♥️♥️♥️

July 22 2019:

Lillian and some of her friends …

July 23 2019:

Found an amazing place to eat while here!! Huge menu! I’ve had the double cheeseburger, bratwurst, Italian sausage, seasoned fries and the strawberry smoothie. Yum to all!! The bratwurst is my favorite! Ordered 3 different flavors of donuts for breakfast for tomorrow morning.

July 23 2019:

Meeting new friends. Catching up with old friends. There is a unique strength about these ladies. Thank you to Michelle Emerson for the reminder when she posted the same picture …

The session that was happening during this photo was focused on maintaining a strong marriage while raising a child with disabilities. Michelle Emerson figured it was a great time to call a meeting of single parents (and one mom whose husband went golfing along with one mom who is in the middle of a divorce).

Most of these ladies are raising a child with disabilities, and their siblings, with very little to NO help from the other parent. I respect and honor these women. Tough as nails. Strong, yet tender. I have a deep running vein of appreciation for all of you! Thank you Michelle for grabbing me as I wandered by as I knew that session wasn’t for me. HA! 😂😍 (I must add that there are a few single dads who attend the conference also. They are in this photo in spirit!)

July 23 2019:

One of the main reasons I am determined to get Lillian to conference every year. She has no local friends. These are her people. Macy, to her left, is her best friend. They communicate all year in anticipation of these three days every summer. She communicates with Lauren and other friends throughout the year too. Damn straight I’m gonna get her here. 💞💞💞

Another first for Lillian!!! She participated in the self-advocate outing with traveling on a bus to their destination. Happy ladies!! Check out this bus! Party music and all! They liked my dancing! 😜 I can’t help it when I hear good music. Must dance.

July 24 2019:

Last day of conference … Thanks to Amy Olson for taking these photos! Lillian and Macy in their matching shirts. And moments when the Giggling Duo became a trio with Lauren! And a photo of the self advocates before their dinner outing Monday night.

July 25 2019:

The Giggling Duo became a trio this year. Beautiful girls. And, one of Thomas and Alex before heading to the zoo outing. 💞💞💞

Missed a day of posting pictures as I was down with stomach bug that swept through. Hit all three of us.

July 25 2019:

Beautiful patio here. Ate lunch and read a bit on Tuesday. The virgin bloody Mary’s are good here!!! Yum!!! Thank you Carmen Tyce for your company and beautiful and kind words. And …..Lillian and Macy in their matching shirts! Finally got to wear them!! They liked this spot on the floor!! 💞💞💞

July 27 2019:

“Thomas, thank you for thinking of Isaac! He loved this glow in the dark balloon!” – Tara Smith

“Camilla, let’s get past that quote of the year!” – Tara (PS: My motto thus far this year has been FBS ….. I’ll let you figure out what that stands for … However, things are looking UP! Wahooo!)

July 27 2019:

We are home!!!! Reno to Colorado Springs to Reno!!! More later ….. 💜💜💜

July 28 2019:

Farewell dinner and dance. Thanks Amy Olson Martin for taking some of these!! These girls were dancing queens! I included the blurry photos just to capture their nonstop moves!!!

It was The Romano Duo’s FIRST Chromosome 18 Starfish Dinner & Dance! Along with the “mystery guest” ….. my Aunt Debbie who flew from Mississippi to join us!! 💃💞💞💞💃

July 28 2019:

Us. Beautiful people. This isn’t the entire group attending as some were in their rooms sick and some just didn’t make it before the photos were taken. Thanks to John McGing for taking this photo from his room while we assembled for the photographers. 💞💞💞

July 28 2019:

Short walk on Thursday to get some fresh air. It was raining lightly. This felt good. Composing myself before Friday’s 8 hour drive to Salt Lake City.

July 28 2019:

A car battery. This is what the trip between Colorado Springs and Salt Lake City was about.

Once I got all the luggage out of the room, in the valet area, ready to load; I made my way to the car to pull it around. It would not start. Fortunately, The Romano Duo and Aunt Debbie extended their stay by one night so we could all drive back at the same time (since our car had overheating issues on the way there and because I was still recovering from the awful stomach virus going around.)

Frank thought it was the battery, but he couldn’t pull close enough to jump me due to cars parked on either side and a drop off to the parking spaces in front of the car. I asked the front desk hotel staff if they could request the car on the right hand side to move and they indicated that was not possible. I asked for suggestions as otherwise we could not jump the battery. They sent their engineering guy out to help.

He was amazing!! Wish I had gotten his name. He and another employee connected our jumper cables, he pulled his truck down below mine, and after several attempts, and some cleaning of the connectors, finally got it to start! Thank you Marriott engineering guy!!! They all assumed the battery would charge as I traveled.

When I stopped for gas in somewhere Wyoming, the car would not start. I had no cell service so could not reach out to The Romano Duo and Aunt Debbie. So …. had to ask the gas station attendant if someone could give me a jump. Thankfully, they were happy to help and it jumped on the first try.

I knew at this point we would need to buy a battery once we reached Salt Lake City. But …. gas did not get us all all the way there. Had to stop for gas again and hope someone would give me a jump. Still no cell service so I hadn’t even been able to tell our traveling partners what was happening!

Once again, thank you to the 3 fellows who helped jump the car in Evanston, Wyoming. It wasn’t easy this time. They had to clean the connectors thoroughly and keep trying. I bought a Coke and a toothbrush so they could get it clean enough (due to corrosion). After about 30 minutes, we were finally on our way.

I did NOT turn the car off again until after we had checked into the hotel, and Frank followed me to an auto parts store in Salt Lake City. I still need new connectors (or whatever they are called). Yet, the new battery did the trick!! Thanks times a million to the Good Samaritan’s along the way …. AND to Frank for removing the old battery and installing the new battery. First leg of trip home = Um. Quite the adventure on this carriage ride of life. Here we go!

July 28 2019:

After leaving Salt Lake City yesterday, we stopped by the salt flats for a quick look. I love standing and walking barefoot on the salt. It is quite crunchy in some spots, but the bottom of my feet felt still feel oh so soft. The bottom of my feet felt so good last night. Ahhhhh ….

Check out the cool photo Lillian took of the rest of us. Optical illusion!!

July 29 2019:

Thomas take a photo of us …. Almost got all of us! On the drive from Salt Lake City to Reno …. Homeward bond!

No more battery problems, no over heating issues … we were on our way. The day before with all of the dead battery/car not starting issues, I forgot the afternoon and evening dose of Lillian’s CBD oil.

Not too long after the salt flats stop there was a major melt down. She sits behind me. Not good when there’s a melt down like this. Had to pull over until there was calm. Let’s just say, I have a little less hair than I did before it happened. I now have three daily alarms set on my phone so as not to forget. 😳

In respect for Lillian … it is not her fault, nor purposeful when this happens. Love you Lillian … 💞💞💞

August 25 2019:

Learning My Limits

Now that I’ve finally transferred the last post and photos from the conference, I will write a heartfelt and soulful post on my personal blog. We have driven to the conference on four different occasions since we’ve been attending; which began in 2008.

The first drive was to Las Vegas in 2008. That was an easy 8 hour drive from Reno to Vegas. The second time was another easy 8 hour drive from Reno to Salt Lake City in 2015. The third was a nightmare 3,400 mile drive from Reno to San Antonio in 2016. I wrote about that one here and here and here.

I have learned that any destination 9 hours or less is do able for me. Over that, where we have to make a stop and stay some place for the night is too much (for me). Yes!!! For continuing to learn about my own limits. From this point forward it will be easier to decide how we will get to the conference every summer. Ahhhhh ….. Stay tuned …

Adventures of Marigold Springs by Lillian Darnell

Another wonderful Lillian story … Once many years ago, there was a time when Marigold Springs was called Magnolia Springs. Magnolia Springs had a girl named Marcella (Marie for short) and she wanted to travel to far off places to have daring cliffs and a never-ending basin of poisoned water.

More importantly, Marie longed for ….

An Amazing Young Author – Interview with Lillian on Curled Up With A Good Book

July 20 2019:

Lillian Darnell’s latest interview …..

“Today I’m delighted to have an amazing young author, Lillian Darnell with us on Meet the Author. Seventeen year old Lillian talks to us about her life, what inspired her to start writing and the amazing fundraising she does….this young lady is an inspiration ….

….. Thank you so much Lillian for your lovely interview. You are indeed an inspiration! I’m delighted that I’ll be reading and reviewing your book soon – so keep an eye out everyone! I expect it will be FAB ….. ”

Meet the Author: Lillian Darnell

 

Unicorn Magic by Lillian Darnell

July 7 2019:

My daughter is fundraising to help pay for she, her brother, and myself to attend a family conference related to her chromosome deletion …. 18p-. It’s the Chromosome 18 Family Conference and this year it’s in Colorado Springs, Colorado USA.

She will create a custom poem especially for you and the donation amount is entirely up to you. This one was a request for a unicorn themed poem from my friend Karen in Mississippi.

Pease share with others you know who may wish to support Lillian. Thank you!!

Unicorn Magic

Unicorns dance like clouds
Leaving little rainbows everywhere.
Unicorns prance happily
as a wave of rainbows everywhere.

Unicorns chase their tails like
dogs shedding pretty
sunsets everywhere.

Unicorns watch over us
Like guardian angels.
The unicorn flies into my dream
As I sleep.
©️2019 LillianDarnell.com 

To learn more, to support Lillian, or read why it’s so important to her, go here ….

http://lilliandarnell.com/2019/03/27/fundraising-for-the-2019-chromosome-18-family-conference-poem-creativity/

 

All About Lillian – Guest Post

July 4 2019:

Guest post by Lillian Darnell hosted by Tracey Scott-Townsend Writer who lives in Kingston-Upon-Hull, East Yorkshire. Thanks tons Tracey for asking Lillian to write a guest post! We are deeply grateful!!

“Hey! My name is Lillian Darnell. I am 17 years old and live in Reno, Nevada USA. I just graduated from high school, have received a one year scholarship to Skillshare.com and am ready to put forth more writings, photography and art …. ” Visit the link to read the entire post and we’d sure appreciate if you “like” the post, comment and/or share it. Thank you!!!

All about Lillian

Asking for Help and Please and Thank YOU – Chromosome 18 Family Conference

July 13 2019:

I’ve never used this before … Yet, I’m kinda, sort of, like, REALLY exhausted and was moved to give this a go for the wee bit remaining to fully cover the cost of this year’s Chromosome 18 Conference. If it moves you and you feel it the right thing to do, please share. Much love! The conference is being held July 21st-24th in Colorado Springs, Colorado.

Once a year she gets the opportunity to be amongst friends and those who get her, those who judge not. Once a year, she gets the opportunity to attend a life changing event. And, every year it does, sometimes a small change, sometimes a huge change. She chooses the time approaching this once a year event, and at the event itself, to conquer fears so as to have exciting news to share with friends …….

Visit this link to read more and to share should it move you. With deep gratitude for all who have shared and donated in the past few days. https://www.gofundme.com/f/help-lillian-spread-her-wings

 

How Liana and Summer Came to be Best Friends by Lillian Darnell

June 25 2019:


Photo by Dominika Roseclay from Pexels

A wonderful story Lillian wrote in honor of National Donut Day earlier this month …

One day, a donut named Liana was walking toward a building called Friendship Inc. and wondered if someone in this building would be her friend. Little did she know, a watermelon named Summer was running toward the Friendship Inc. building and wondering the same thing.

When Liana and Summer reached the …..

How Liana And Summer Came To Be Best Friends

Support Lillian as She Spreads Her Artist and Author Wings

June 23 2019:

Lillian has another guest blog post upcoming and we thought it time for her to create an official page for her writings, art and creations. If it feels the thing to do, I invite you to “like” her page. Thank you tons from both of us … ❤️❤️❤️ … Go here to like her page … https://www.facebook.com/LillianDarnellArtist/