The New Place While Making My Way Reading

August 12 2019:

Got to see the new place this afternoon .. styling with the orange vest and hard hat!! Less than a month now … We will lose a few great aspects of this place and community; yet, will gain great aspects that this one does not have. 🎉🎉🎉

August 13 2019:

Making my way through the “to do” list for this month and September. With Lillian turning 18 in September and our move in September, there’s much that needs addressed.

After two days spent educating myself about the qualifying aspects of SSI, I think I can check that one off the list. What a relief and weight off my shoulders for that one!

Now to address a call today that due to an agency losing paperwork that I followed instructions for submitting, and for which Lillian has received services for 2 months; they have decided she has to get on a wait list since they lost the paperwork the first time around. Tomorrow. I will deal with you tomorrow. I’m on a roll!! Bring it!

August 15 2019:

Currently reading. One is the second time around. I have different books for different times of the day. Two for early morning reading and one or two for before bed. How about you? What are you reading? Do you read different genres for different times of day? Or is that my special thang? Haha!

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 …

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

 

Mermaid’s Song by Lillian Darnell

July 17 2019:

Mermaid’s Song

Mermaids swim the water
like a dolphin.
Mermaids sing as 
sweet as a pineapple.

Mermaids travel like whales
to explore magical lands
of unknown kingdoms.

Mermaids swim in the sky’s ocean
dancing in the sunlight.
Mermaids flick their tails
leaving water droplets
high in the sky.

Mermaids whisper
my name into the shell
as I listen to the waves of
mermaids talking.
©️2019 Lillian Darnell.com

Written by my 17 year old daughter, Lillian. She is still fundraising by offering to write a custom poem just for you. She wrote this one for a friend down South … Mermaid themed! Thank you Christy!! Let us know if you’d like one! Donation amount is completely up to you.

from Lillian: Hey, everyone! For this year’s fundraising efforts for my family to attend the Chromosome 18 Conference in Colorado Springs, I decided to make customized poems. Here’s some information on the poems:

The poems will be nature themed, fairy themed, mermaid themed, or unicorn themed. Every poem created will be different and uniquely yours! The poem will be made into a lovely graphic image and emailed to you. Go here to read why this is so important to her …

Fundraising for the 2019 Chromosome 18 Family Conference – Poem Creativity

Although the conference is over for this year, you can still take part in Lillian’s offer of a custom poem. We’ve got a move coming up on September 9, and funds raised will go towards that. Lillian and Thomas will each get their own bedroom!! Plus, Plus!!! We will have a 2nd bathroom!! Ament to that!!

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/

 

My Dream Story by Lillian Darnell

June 14 2019:

Another wonderful story by Lillian …

“Once many years ago, Anne was playfully jumping on some stepping stones designed to look like flowers. Many years past and Anne was now sleeping peacefully and was dreaming. Meanwhile, there was a hidden dream cam in her brain recording her dream.

Anne’s dream got … ”

My Dream Story

 

 

 

Graduation Day Book Signing for Lillian Darnell – Where Would You Fly

June 1 2019:

Book signing for Lillian today!!! Fifteen books signed! 🎉🎉🎉The Romano Duo came by to deliver a graduation gift to Lillian!

Lillian Darnell Senior Graduation Photographs and Online Celebration

May 29 2019:

First round of senior/graduation photos for Lillian. She’s wants photos at a different location too! Ha!

This was the perfect spot for the first set. The little garden behind the library. We’ve been coming here ever since she was 5 years old.

I’ve taken tons of photos of the three of us in this little garden throughout the past 12 years. 🙏🎉💗💗💗🎉🙏

May 31 2019:

Lillian’s live facebook celebration …

 

Lillian is Graduating and I Have Butterflies in My Stomach

May 15 2019:

Just ordered Lillian’s high school graduation diploma and tassel. Now to get the announcements. If you’d like to receive an announcement, message me your email address or post it here. Why do I have butterflies in my stomach? HA! 💜🦋🦋🦋💜 Thanks to my daddy, Robert Downs, for helping with this part! 🙏💜f

May 18 2019:

Look what came in the mail today!! 😳😃 Shhhhh … Don’t tell Lillian. Although, she’ll probably see this post! June 1st is fast approaching! Take that you blankety blank blank geneticist! You don’t have to be highly intelligent and a math whiz to be successful in life and contribute to society!! And you don’t have to do it the way it’s “supposed” to be done.🖕🏻

Lillian Darnell – Graduating June 2019

May 6 2019:

Have spent nearly all day creating Lillian Darnell’s High School Transcript! Oh my goodness! Her official graduation date will be June 1st; which also happens to be National Donut Day … HA! And, the book signing event at Barnes & Noble!

We’ll be celebrating with donuts and books!! I’m sure we will have a wee live online celebration for Lillian’s long distance friends and family too. Stay tuned … What a journey!