Adventure Day with a Museum Pass to The Discovery Museum

September 5 2019:

Today’s adventure … Thanks to Washoe County Library’s “Museum Pass” program, you can “check out” tickets to several local museums (and several more in California!)

Lillian stepped into one of her fears, and took the steps back up to the main floor. Got a few good pictures of that. Her hands were quite sweaty by the time she made it to the top. Yet, she did it!

We stopped for ice cream on the way home … Blueberry lavender for me, cookie something or other for Thomas, and a bag of BBQ chips for Lillian since she doesn’t eat ice cream.

Supported Decision Making – Research as Lillian Approaches 18 Years of Age

August 20, 2019:

Thank you Diana Beeghly Rovetti for getting me one of these packets! And, thank you for spending 2 hours with me discussing Supported Decision Making, Sierra Regional Center odds and ends, transportation, SSI, Sibshops, and whatever else we covered!!! Ha! Thank you, thank you, thank you!!! Deeply grateful! Another load off my shoulders. Whew!

August 24 2019

Two to three weeks working my way through the “Lillian turns 18” next month list, along with other “must be addressed” items.

SSI figured out for the moment
I have a better grasp on Supported Decision Making now and know I don’t have to feel rushed for that one.
Have researched and messaged back and forth regarding changes to the dosage of CBD oil
One issue almost completely taken care of – just waiting to receive something in the mail.
Still working my way up the ladder with the SRC issue. Got the supervisor of the supervisor’s email address yesterday afternoon.
Have gotten Meeting the Authors nearly caught up
Got 2 boxes packed for our upcoming move 😂
July and August date day with Lillian
Now … hoping to make my way back to my book this week and plan for Lillian’s 18th birthday!!

Thinking I may take a day or two off in October … July, August, and September have been and will be intense! Whew!

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August 27 2019:

FINALLY got the issue with SRC resolved! Took nearly a month and going as far as the supervisor of the supervisors. Now I know why I like emailing as opposed to the phone. I had a timeline that indicated I had turned everything in as asked, when asked.

Recap: Turned in all documents in May having to do with a service for Lillian. It was approved. We used it for June and July. Got a message in July they had canceled the approval and had put her on a wait list as they didn’t get the documents needed. I kept getting “nothing can be done” until I sent an email this Monday to the supervisor of the supervisors. Done. And, retroactive to include July as I didn’t know they had not paid the provider for July.

So …. when dealing with agencies, keep notes on your calendar and email whenever possible!! Whew!! One thing completely off the list! Onward!

And a side note … I am kind in these communications; but firm. I also make sure the supervisors know that the person they supervise has been pleasant and helpful and that I appreciate them (if they have and I do). I did let them know about a rude individual who had contacted the provider about not receiving a form that was turned in …

Lillian and Camilla August 2019 Date Day

August 16 2019:

Lillian and Camilla August 2019 Date Day

First stop: Fries and pretty in purple sugar cookie for Lillian. Tahini Broccolini with a Neapolitan cupcake for me. Yum!!

Second stop: Browsing at one of her favorite stores. You should have heard what Bones said to me!!! 😱💀He was just joking, though, and we moved past it.

Last stop: Bartley Ranch – We had planned on Audrey Harris Park but it was closed due to a performance. So, we found this sweet lil spot, read for a bit, and ended with photos and playing with shadows and trees.

Third Time Has Got To Be The Charm

August 10 2019:

Third time has got to be the charm! The past two summers I have begun packing to get us moved … And, we didn’t move! 😳😂 Just could not find a place for us to move with the growth and housing shortage here. This time, we know where we’re going. I get to see the inside of our new place on Monday.

We aren’t going far … just about 5 minutes from where we are now. Moving to a tad larger place; from this one bedroom/one bath to a two bedroom/two bath.

Thomas and Lillian will finally get to have their own space again! And, hallelujah to two bathrooms! It happens around September 9th – unless we have some sort of miracle and can move into a larger place here. Let the packing begin .. Again!! 😂💜 (photos from 2016)

**Update** The move got bumped to September 16th, due to a delay with NVE turning on the electricity!

Lillian and Camilla July 2019 Date Day

July 30 2019:

Lillian and Camilla July 2019 Date Day

First stop – Fries and a lemon cheesecake cookie for Lillian. Crispy cauliflower and a vegan cinnamon sugar donut for me.

Second stop – She likes throw pillows. So, a bit of fun looking at pillows … and other cool stuff. Love this hanging chair. Oh my gosh. I could have stayed there for a while. 💙💙💙

Last stop – A beautiful sunset walk. Ahhhhh …. It’s great to be home!

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 …

Thank You and Updated the Fundraiser

July 21 2019:

Thank you to everyone who has shared and supported this effort!! I continue to be in awe of those who support us, as many times I don’t feel worthy or deserving. So, truly and deeply, I offer oceans of gratitude.

I have updated the fundraiser regarding what is to follow once not that we have returned to Reno …. Much love to all of you!

https://www.gofundme.com/f/help-lillian-spread-her-wings&rcid=r01-156607985251-71b2fd18a0e54204&pc=ot_co_campmgmt_w