In July we attended the 2019 Chromosome 18 Family Conference in Colorado Springs, Colorado. It was the 4th time since 2008 that I had driven to the conference. I finally learned my limits with this drive. In this case, the fourth time’s the charm!
I want to once again thank the Good Samaritan’s we encountered along the way, the wonderful people who donated to our fundraiser, The Romano Duo (my mom and step-dad) and the angel mom who paid for us to stay an extra night so I could have one more day to recover from the horrid norovirus that swept through the hotel guests.
For the most part, we enjoyed ourselves as much as possible with the drive there and back, and while at the conference. If you take the time to read the post linked, you’ll see it wasn’t all peaches and cream. There were some definite unlovely and maddening experiences. Horrendous traffic, car accidents, car problems, melt downs, and the nasty norovirus that swept through hotel guests and all three of us. The last unofficial count I saw was about 200 people got hit with it!
Thomas and I had a beautiful time visiting The Garden of the Gods. Definitely check out those photos in the linked post. Magically beautiful. We also had a lovely rest stop at The Salt Flats in Utah; which was deeply refreshing. Here are a few photos from each of these wonderful places.
Lillian had many firsts and conquered a few fears along the way. It’s always a blessing to see her reunited with her best friend and making new friends too!
Ending with what I’ve learned about my limits with attending the conference. 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.
At some point in the future, it is my plan for Lillian to travel to the conference without me. If she and Thomas can reach a point of getting along and respecting one another, they can travel together. Or, if that doesn’t happen, hopefully one day she can travel with a friend, or even alone. That’s the plan and we’re making our way to it’s fruition! 2020 Conference will be back in San Antonio! See y’all there!
Camilla See It. Share It. BE IT … Spread Love Everywhere You Go!
I drove Team TLC 3,400 miles. Thursday, July 7, 2016 through Saturday, July 16, 2016 I drove 3,400 miles roundtrip to attend the Chromosome 18 Conference – Reno, Nevada to San Antonio, Texas .. 1,700 miles each way. A conference Thomas and Lillian have their hearts set on attending every year. We began attending the C18 Conference in 2009 when it was in Las Vegas and have gone every year since then.
We arrived home at midnight on Saturday, July 16th. I was kind of it out of all day Sunday. Then Monday, I woke up ready to go! By Monday afternoon, every muscle in my body ached and I felt weighted down. I was completely out of it for 4 full days. It took about 7 days before I felt like myself again.
Yet, I DID IT!! … xoxoxo
The plan was to leave at 5:00 am on Thursday, the 7th, so that I could drive as far as possible before darkness fell upon us. I am completely out of my comfort zone driving in the dark in unfamiliar places. I could not get to sleep the night before. I was worried and having anxiety about this trip due to finances, honestly, not even having enough to cover the trip.
Yet, I know how deeply important this conference is to Thomas and Lillian. Each for their own reasons. Thomas is the sibling to a sister who has a chromosome deletion. He has, and is, developing deep friendships with the other siblings his age and being mentored by the older siblings.
Lillian’s friends are her peers that she has connected with through this conference. She communicates with some of them all throughout the year. When one texts, blogs, post on Facebook and Instagram, emails, chats on Facebook, or uses skype; the spoken word is not needed.
In our world of verbal communication difficulties, social media has helped create a world that would not exist for Lillian and one where she has true friends. She has no local friends, yet she has friends all over the United States and the world … As far away as Tasmania, Australia.
After having about 3 hours sleep, I could not seem to get ready as I was overwhelmed with the enormity of this trip. I had an adult meltdown which delayed our departure. We were finally on our way at 7:00 am; two hours later than I had planned.
There was much excitement as we began the road trip. Lots of talking, observing the landscape, and silliness. About two hours into the morning, we lost cell phone service due to the rural area we traveled. We were without cell service for the next five or six hours until we reached Las Vegas. During this time, Thomas and Lillian became absorbed in reading books, magazines, or using their computers or phones.
Which left my mind much time to mess with me. I had stepped way out of my comfort zone with this trip. I had never driven this far, much less driven this far being the only one in charge of packing, driving, and navigating. Plus, we had never driven this far as a family. Our max road trip travel time was to the 2015 conference in Salt Lake City; which was about an 8 hour drive from Reno.
Thoughts of us being stranded due to car problems kept entering my mind like a dark storm cloud encroaching on the brightest of days. Thoughts of the lack of finances for this trip took their turn in the dance also. Not to be left out of the dance, thoughts of my insanity at attempting this cut into the dance too. All of this dance to be completed with the veil of anxiety and worry weaving in and out like a breeze blowing through the trees.
Thankfully, I am a student of mindfulness and emotional connection. And, since there was nothing else to do but sit and drive, I took this opportunity to put these practices to work. It was a rapturous dance between being mindful, connecting with emotions, and embracing the fear wanting to dance with me.
This trip proved to be challenging. I had not anticipated this dance with life in all of its flavors and colors in such a way to cause the suffering brought on by my thoughts. It was my goal to have this trip be a learning experience for me of not knowing, not planning, and just going. That’s certainly not for everyone.
Yet, I felt this was important for me. It’s a huge step out of my comfort zone. One step closer to trusting myself, trusting internal messages, and letting go of how it’s supposed to be done. As mentioned earlier, I’ve never driven this far alone … Much less alone with Thomas and Lillian. In addition to driving this far in Rosey, our 15 year old car, with dancing through this trip on less than a shoe string budget and letting go of worry that the string will hold tight.
I had moments where I was so extremely hot and exhausted I had visions of taking an ice bath and moments when I was so tired I was shaking and wondering what in the heck I was doing ….. Yet, I know. I may not know on the surface right now; but deep down, I know why I do what I do.
This was also a dance full of wonderful, bright moments. We shared inspiring comments and tons of love that furthered each one of us. Definitely some amazing growth for all of us happened! WOW!
We had a ball and laughed tons and enjoyed the beautiful landscape as we drove by it. Lillian was being so helpful and encouraging Thursday morning before we left.
Thomas was awesome and inspiring with his comments as we drove the two lane highways in the middle of nowhere in Nevada and Arizona. We saw a huge sign that read, “Nothing” and had a great laugh about that! Just after driving through Boulder City and Hoover dam, Thomas said, “I love it here.” He was so impressed with Lake Mead and said he wanted to live there.
Thomas went on to say that he always has deja vu and he has lived this life before. He said it all seems so familiar. He was incredibly inspired by the beauty that passed before our eyes. He also commented that he wants to buy land and simply let kids play on the land.
On the first day of driving, Lillian got sick to her stomach. We ended up spending about 30 minutes at a gas station bathroom and Thomas was extremely helpful. When we were looking for a place to stay and it kept getting darker and darker, I apologized to them as I had planned on stopping sooner. He said, “When you get a rock in your shoe, just shake it out.”
Rosey did a pretty good job. She had a wee bit of problems getting overheated but that was resolved with turning the air conditioner off while traveling up and down the mountainous areas. I had to give her some oil and coolant on the way there and some oil on the way back home. It’s scorching hot checking oil and fluids in over 100 degree weather!
With an hour and a half to go before we arrived in San Antonio, the epoxy glue I use for the driver side mirror had enough of the heat and was simply melting away! A couple of years ago I bumped the mirror backing out of a covered parking spot. So, for about 20 minutes I was holding the mirror until I could pull over. Bungee cord to the rescue!! Before we headed back home, the hotel gave me duct tape and that worked great for the ride back home.
I feel strongly guided to be establishing a new relationship with myself and the world and to model this for my kids, have them actively participate, and to help them know that there’s more to life and living than traditionally meets the eye.
I want them to never lose touch with their true self and to grow into adults knowing their given talents and having a solid and clear courage and conviction in sharing that talent with the world!
I continue to learn so much daily … About me, Thomas and Lillian, others and simply just living and dancing with life! xoxo
Camilla See It. Share It. BE IT … Spread Love Everywhere You Go!
Wonderfully exciting news! We’ve completed the first book trailer for my 10 year old son’s, Thomas Darnell, upcoming book, Biggest Little Photographer. You can learn more and pre-order here.