Category Archives: News and Events

Happy 16th Birthday to Thomas Darnell

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November 13 2021

On this day in 2005, the world was blessed with an amazing human. Thomas Arthur Darnell swam into the world during the hour of 9:00 PM PST.

I was blessed to live in an area that had an OB with midwives who built a Birthing Center attached to her offices. It also happened to be less than a 10 minute drive from our home. When contractions moved along, we met the midwife at The Birthing Center, she filled the large bathtub, I melted into the comfort of the water, and shortly after, Thomas joined us.

We were there for about 3 hours, and then back home in the comfort and coziness of our own home. This is a cherished memory, held close to my heart.

Dearest Thomas,

I know most parents say that having a child, being a parent has changed their life for the better. Even that their child has taught them the true meaning of unconditional love. I join other parents in embracing this message.

If one were to look at my life before you, and the years after you became a part of my life, one would see drastic changes. These are not mere words I say to fill the page of your day of birth message. They are truer than true.

You continue to open my eyes and heart to the true meaning of embracing all people, discarding archaic language and thoughts that serve to hurt others, and following one’s heart. Whether that following is a hearty “Yes”, or a solid “No. How liberating is that??!!

I am overflowing with joy that you joined our family on this day in 2005, deeply proud of you, and excitedly looking forward to your future. You are an amazing and wonderful person.
Thank you for being my son, Thomas.

Happy 16th Birthday!!

I love YOU!!
Camilla
Mom

November 13 2021

Key lime cheesecake cups with lots of lovely gifts. 😋😋😋 The Romano Duo and Robert joined us, but I completely spaced on photos of them, or with them! Ugh!

Thank you to Grateful Gardens for the amazing raw, vegan cheesecake cups. They were perfect!

Thomas got t-shirts, posters, book of piano music, computer stand, a custom photo book, homemade card, and money. He is very happy with his gifts. 🎉❤️❤️❤️🎉 (He has a hard time smiling with the Herbst appliance in his mouth. Makes it difficult!)

2021 Stanford Neurodiversity Summit

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November 7 2021

Perhaps I’m emotional this morning, but I’m listening to the welcome presentation at the Stanford Neurodiversity Summit (online), and am in tears. So many sessions that apply to each member of Team TLC. Amazing content! Mental health (suicide), gender identity, careers/entrepreneurship, occupational therapy, and much more.

This session has been amazing! I’ve been listening to this summit all day. I feel seen. I feel validated as a parent, and as a person.

November 8 2021

This is a vital, important topic. Good, informative session.

November 11 2021

Excited for Thomas!! He has his first session on Monday.

Halloween 2021 with a Chromosome 18 Dance Party

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October 28 2021

Chromosome 18 Registry & Research Society Halloween Zoom Dance Party this afternoon. So much fun. Love dancing with our C18 pals.

October 31 2021

We had a great time with The Romano Duo to celebrate Halloween. Mom made homemade vegan chili for me and Thomas. So good!!

Then Lillian transformed into the Rainbow Rose Fairy Princess, and Thomas transformed into Sunny from Omori with Something for a bit of Trick or Treating. (The last photo is of Sunny from Omori.)

 

Throwback Post: You Are Not Alone With Fresh Vegetables Under an Eerie Sky With Enthusiasm

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**THROWBACK POST**

August 23 2015:

Sending so much love, understanding, and “You are not alone” thoughts to those parenting kids struggling with processing emotions and feelings. Three times yesterday in the span of just 5 hours, Lillian had a huge meltdown when things didn’t go as she wanted or planned. I spent about an hour with her each time trying to help.

I was moved to share for anyone else who needs it. You are doing a GREAT job. You are loved. You are not alone. And. Your child (or loved one) loves you for all that you do to help them. I think they feel so out of control and unsuccessful when this happens and your presence lets them know they are in control and successful. xoxo

________________

August 23 2013:

Stopped by to get oils from my friend Kymberlee Simantel and got some surprise goodies from her garden! YAY! Thank you Kymberlee! Can’t wait to eat em up!

Forgot about this picture I took of the sun yesterday afternoon …. Eerie with all the smoke …. yet still so beautiful!

___________________

August 23 2012:

Finishing our 2nd month of swim lessons … Thanks Grandpa Frank!!

My turn now! I love this new school so much that last night at Lillian’s class parent orientation … I was ready to sign up for everything!!! Had to hold myself back!! I did sign up to be the parent liaison for PTO meetings once a month for Thomas’ and Lillian’s class. I’ve never been this moved by a school and want to be so involved! That is ALL y’all!!


_____________________

August 23 2011:

I just love it when all the pieces of our life puzzle just seem to put themselves together when we get out of our own way!! I am truly grateful to the fabulous and awesome people around me – my family and friends, my eWomenNetwork Reno/Carson/Tahoe/Vegas/Sierra Nevadas Chapter friends and my Chromosome 18 Registry & Research Society family!!

Praying Mantis – Making Himself Huge With Sushi and Eternals

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November 2 2021

We’ve had a lovely visitor at our front door for the past few days. Thomas was going to move him, as we were afraid we might step on the little fella. He wasn’t having it, making himself look huge!

November 5 2021

This afternoon was veggie sushi, followed by a matinee showing of Eternals with Thomas.

I have to share this wasabi powder. It is amazing!! It’s 100% freeze fried wasabia japonica (wasabi). Mix it with water, let sit for 10 minutes, and wow! 💥💥💥 It’s strong! Also this sushi ginger. Incredibly tasty!

The sky was gorgeous when we exited the theater, with both of us agreeing that we liked the movie.

Happy Birthday to Patty Romano – A Fun Photo Book

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November 3 2021

Completely forgot to share the photo book I made for my mom’s birthday last month. I’m finally doing something with all these photos I take!

Follow the link to see the full photo album …

https://www.mixbook.com/photo-books/interests/blank-canvas-25815708?vk=S6gTco51G2tlogjTLPVZ

Great Day to Mail Words of Alchemy and 2016 TLC Letters to Our Future Selves

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November 1 2021

It was a great day to mail a signed book with a surprise inside. (When I mail signed books, I include a short found poem, created using books destined for the trash, rescued from the library.) Your book is on the way, Renee.

Also a great day to mail these letters we wrote to ourselves in 2016, five years ago. We wrote them, sealed them, and I hid them in my fireproof safe box. I put a note on my calendar for 5 years out to mail them. Can’t wait to see what I wrote to myself! I absolutely do not remember!

November 3 2021

This was such a moving experience. Today we received the letters we wrote to our future selves five years ago, November 2016. Thank you 2016 Camilla. ❤️❤️❤️ Thomas likes his, too. Lillian likes the advice she gave herself.

Throwback Post: Oh Happy Day – Oh Library Day

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**THROWBACK POST**

August 24 2014:

Oh happy day, oh library day, oh happy, happy day! We scored and there was a tech fair! Thomas got to see a homemade 3D printer and talk to the creator and work with Don of Reno Collective to learn to some Ruby coding! Oh what a happy boy!

News: Camilla as the Volunteer 18p- Coordinator

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October 30 2021

Some news to share. I’ve taken on a volunteer position with Chromosome 18 Registry & Research Society.

Hi. I’m Camilla Downs and I’m looking forward to my role as the new 18p- Coordinator. My name is Camilla Downs (pronounced like Pamela but with a “C”), and I’m a 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 begin work on her phobias. All of these issues are still with her.

I divorced in 2007, moving to Reno, Nevada from … Follow the link to read the full announcement …

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