Beautiful spot for coffee this morning. I feel like a bit of relaxing this morning.
July 11 2023
Ladies night was so much fun!!! Talking, laughing, and drinking with such beautiful people. I sat back at one point just scanning the room, looking at everyone deep in conversation, laughing, smiling, hugging; and I thought to myself, “This is incredibly beautiful.” ❤️❤️❤️
Just back from my first walk in Columbus. Stunning grounds. And it wasn’t too hot. Bonus!! Not sure these folks have experienced a tattooed woman walk-dancing around the grounds. Now they have!
Photos from today. These people are so precious and amazing.
I absolutely love the photos of the Giggling Trio – Lillian, Macy, and Lauren. They light up around each other, and it is beautiful to experience. ❤️❤️❤️
Team TLC is on board, on our way to the C18 conference in Columbus, Ohio. ❤️❤️❤️ Thomas is in front of us. By the way, Reno-Tahoe Airport is a cluster fuck right now. 😱😡😱
Beautiful Reno sunrise as we left this morning. 💛💛💛
The Nevada Caregivers Coalition hosted a webinar last month on Independent Living Options which I missed due to an appointment for Lillian. I listened to it today, and had myself some long overdue sobbing.
Don’t get me wrong. It was an informative and great session. I encourage anyone who is interested to have a listen.
This caregiving role can feel so overwhelming at times. Especially when you are the sole person in charge of deciding what to do, how to proceed, and then doing it. I’m emotionally and mentally exhausted at this point. I’m still recovering from the Great Burnout of 2019 and 2020. 🤪🙃🤪
I’m not sharing for sympathy. I’m sharing for those who may need to hear this message (myself included). It’s okay to not be strong, to have sad days, to sob ’til there are no tears left, to let yourself feel the absolute utter shit show that life can be. Feel that shit, let it out, let it move through your body. I’m with 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 21 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 17 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.
I’m looking forward to my role as 18p- coordinator. My name is Camilla Downs (pronounced like Pamela, but with a “C”), and I’m mom to 20 year old Lillian Darnell and 16 year old Thomas Darnell.
Lillian has 18p-, being diagnosed when she was 3 years old after the pediatrician suggested genetic testing, due to Lillian being behind in more than three areas of development. The pediatrician called me as soon as she got the results, letting me know over the phone, rather than postponing until we could get in to see her. After pulling myself together, I found the Chromosome 18 Registry that night while searching online. This was before facebook, and social media groups, and I joined The Registry shortly thereafter. I spent time observing the conversations in the Yahoo listserv before jumping in, introducing myself, and asking questions.
The main ways 18p- has manifested throughout the years for Lillian are speech difficulties, chronic stomach pain, proprioceptive issues, balance and depth perception, difficulties with executive functioning skills, and inability to process emotions. In hindsight, I can see she exhibits many symptoms of autism. That is currently being addressed. In the past she has done speech, physical, and occupational therapy. Currently, she receives craniosacral therapy, and just began seeing a therapist to begin work on her phobias. All of these issues are still with her.
I divorced in 2007, moving to Reno, Nevada from Tacoma, Washington. (Hey single parents out there. I see YOU!!) We’ve attended the yearly Chromosome 18 Conference since 2009, when it was in Las Vegas. It was so close, within driving distance, I just had to go check it out (Vegas is an 8 hour drive south of Reno). I was hooked, and we haven’t missed a conference since then.
The Registry has been deeply meaningful to us, by way of education, resources, research, and friendships with others who help us to know we are not alone. Thomas participates in the sibling track, and sibling events in between conferences. He also attends our local Sibshops events, and is in training to become a Sibshop Leader. Lillian’s closest and dearest friends are her 18p- friends, met at conference. They stay connected throughout the year via social media, texting and video chats.
(Thomas July 2021)
In honesty, Thomas and Lillian have a strained relationship. Thomas discusses this with his therapist, among other topics, and Lillian has been discussing it with her therapist. I am hopeful that with time and understanding they can move through this current phase.
I was a paralegal for ten years before Lillian was born, ending my career as a paralegal in the Civil Division of the Pierce County Prosecutor’s Office in Tacoma, Washington in 2001. After that, my husband and I co-owned a construction company.
After divorcing in 2007, and moving to Reno, I taught myself everything to know about blogs, blogging, and social media. I became a Social Media consultant to local businesses, teaching a couple of times at UNR’s Extended Studies. After tiring of doing this, I became certified as a Coach to assist special needs families, and published my first book, D iz for Different – One Woman’s Journey to Acceptance. In addition, I became certified as a Reiki Master.
I then moved on to substitute teaching at my kids Montessori school for 3 years. When they both moved to homeschooling, I shifted to becoming my community’s go to pet sitter, and dog walker. We moved from that community in late 2019, and in February 2020 I officially became a Shared Living Provider/Host Home Provider for Lillian (meaning that I get paid). I also manage and facilitate a venue that interviews authors around the globe, MeetingtheAuthors.com.
(All Team TLC Books to date)
Lillian’s book, Where Would You Fly and Other Magical Stories, was published in 2018. Thomas’s book, Biggest Little Photographer, was published in 2016. And, my latest book, Words of Alchemy, was published in 2019. Lillian also has an etsy shop with her artwork for sale – https://www.etsy.com/shop/LilliansImaginarium.
(Lillian when she received her proof book 2018)
Lillian graduated in June 2018. Thomas is in between what is traditionally the 10th and 11th grade. These days I spend a great deal of time advocating for the two of them, putting great amounts of time into researching and educating myself. Thomas has just recently been diagnosed with depression, anxiety, and autism. Lillian is due to be tested for autism in January 2022, which I am pursuing so that she can have access to certain therapies.
(Lillian high school graduation May 2019)
Please reach out to me any time. I’m ready to do what I can.
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 15 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.
I have no idea when Lillian shared this with me. It was either in 2017 or 2018.
(Photo from an October 2020 Date Day with Thomas)
Hey there! Imagine a maze with dead ends and straight lines. Every bad thing that happens takes you to a dead end even if it seems to be leading in a straight path. Every good thing that happens takes you to the correct path. The entrance is you come in the maze as a newborn and the exit is your soul exiting and reentering as someone or something.
I told the shortened version to Camilla this morning and it had just came to me. Think of your life like this and your life should be easier to live. – Lillian Darnell
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 19 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 15 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.
Thank you to Helen for this beautiful review of Lillian’s book.
My review for Where Would You Fly? & Other Magical Stories by Lillian Darnell, 5/5 stars.
The first line of the blurb for this book reads:
Welcome to the radiant imagination of Lillian Darnell, a wonderful and unique human being, the kind who comes around only once in every 56,000 births, as she is missing the short arm of her 18th chromosome.
I thought it was the perfect introduction to my review. Her stories are full of imagination and wonder, as you see the world through her eyes from age 4 (written with a little help from her mum, Camilla) to age 16. Some are gentle guides to mindfulness, others to how to be happy, and most are delightful stories with fairies, unicorns, and magic.
I have to admit I found the Emotions and Feelings part particularly touching, where Lillian explores her own emotions while growing up. Her condition, and her journey which led to the publication of this book, are explained in the introduction by Camilla, who is also a wonderful poet, and a beautiful person. Her dedication to Lillian, and her son Thomas, is evident through the stories Lillian has written and the love she has for her family.
Every now and then it’s lovely to get away from the real world and travel to distant lands with mythical beings. Lillian’s book is a wonderful distraction that you can dip into every now and then, and it will put a smile on your face. Many thanks to Camilla, Lillian and Thomas for the chance to read Where Would You Fly?
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 19 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 15 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.
Hey! Hey! Here’s the huge announcement regarding my daughter, Lillian Darnell’s, creations!
I have been working on this for months, with the help of a very incredible friend! Thank you to Kate Raina for guiding me, and getting Lillian’s creations in the proper format for digital printing and professional printing.
There are more items to add, I just needed to get this thing “live” to push myself! If you use etsy, please favorite Lillians Imaginarium. And please let me know if you see anything out of sorts. I have no idea what I’m doing, I just figure it out as I go along. Thanks to everyone who cheers us on, and supports all of our creations. Oceans of love to all of you! xoxo
For anyone new to my blog, Lillian is my 19 year old daughter. She has a chromosome difference called 18p- (which means she is missing the short arm of chromosome number 18). This affects 1 in 55,000 people. This manifests in difficulty with speech/articulation, emotional regulation, balance, and depth perception, anxiety, sensory issues, inflexibility, chronic stomach pain, and pain in general. She will be tested for autism in the near future, which will guide us, and help in better understanding Lillian.
Check it out …
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 19 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 15 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.
It is done. I normally wouldn’t take so many pictures. Yet, this was Lillian’s first time. She can’t/won’t wear a mask so she didn’t get to walk it in to the official ballot box at Raleys – took me about 2 minutes. 💙🌊💙
When Lillian reluctantly agreed to register to vote last year while we were getting her ID, she had no intention of voting. I suggested she might change her mind, and this way she’d be ready, just in case. I asked her last night why she changed her mind, deciding to vote. She said, “The United States needs me to vote.” She researched the candidates and the questions for hours. Congratulations, Lillian Darnell!!! 🏳️🌈🏳️🌈🏳️🌈
Go here to see the original post on the Team TLC website …
Finally got to have Lillian’s poolside BBQ birthday celebration. We weren’t able to do it on September 14th due to the smoke, and poor air quality. Wonderful afternoon hanging out with The Romano Duo.