News: Camilla as the Volunteer 18p- Coordinator

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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Hallelujah – Camilla Gets Respite

June 22 2021

It has been 1 year and 8 months (October 2019) since I’ve had respite. I didn’t realize just how much I needed this until right this minute, typing this. I am in tears.

Hallelujah times infinity! Sweet, blessed relief. She is going to try and stay a full 7 days, as she needs respite, too!! 🤣😂

Hot dam*, let’s party! And by party I mean, do nothing. Absolutely nothing. Perhaps extra movie nights. Enjoy the quiet. Extra reading. Extra relaxing. MINUS being needed every 5 minutes. Ahhhhhh ….

And time for some kitchen dancing …

June 29 2021

Lillian came home today, arriving about 1:30 this afternoon. She hasn’t stopped talking since. 🤪 Did she not talk the entire time she was gone? 🤣😂🤣 We were outside taking in the wild sky. Earlier we had a freaky, huge dust cloud blow through and then purple, pink, yellow, and orange colors. Photos to follow.

A couple of “I’m too old for this shit!” messages from my mom, yet, they all made it the full 7 days! Wahooo!!

Full of Imagination and Wonder – Where Would You Fly

And then there was this lovely surprise yesterday … Thank you to Helen of Pink Quill Books!! I appreciate YOU! xoxo

“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?”

To learn more about the book, go here …

Where Would You Fly

Peppermint in the Sky – New Poetry from Lillian Darnell

February 7 2021

New poem from Lillian Darnell … This made my eyes pool with liquid love .. 🤍❤🤍

Peppermint in the sky above
Smelling like festive mints
sweet scents feel the air

Cinnamon dances
like brown snow
as cinnamon fades
through the dark

Pine trees sway and dance
Like wind and dancers
Spreading the …. Follow the link to read the full poem

Festive Seasons

New Story from Lillian Darnell – Two Female Unicorns

February 11 2021

Another new story from Lillian Darnell … xoxo

Once there were two female unicorns named Rosa and Beth who lived in a land called RainbowTopia. The two female unicorns lived with their family and the family all thought all was well or so they thought …

Magical Unicorns In Love

Lillian Darnell – First Time Voting

October 23 2020

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!!! 🏳️‍🌈🏳️‍🌈🏳️‍🌈

Throwback Post: One Blood Test, One Phone Call, One Moment in Time

**THROWBACK POST**

November 3 2015:

The article I contributed to Interaction, which is a multidisciplinary journal for the Australian Institute On Intellectual Disability, has just been published. Here’s a brief description of what and why I was asked to contribute: “looking at creativity in how we work and interact with people with intellectual disability. The other theme I am interested in exploring is empathy and how this “works” within our relationship building within intellectual disability”

Excerpt from the article: “One blood test, one phone call, one moment in time, drastically changed the direction of my life forever. I know more about genetics, chromosomes, DNA, motor skills, verbal skills, and now emotional and behavioural issues than I ever thought I would need or want to know. ……. I thought I had life pretty much planned at that point and for a while this brief phone call seemed to have caused my life to break apart like a melting iceberg with pieces scattering here and there. Looking back now, all that was brought into my life, all that occurred, all that began, and all that ended were meant to happen for my own growth and enlightenment. An enlightenment I feel spreads far beyond myself and my family as I believe we are all connected.”

My article is on page 30. However, the entire journal is excellent! You’ll need a chunk of time to read it as it’s short story length at around 4,000 words. I encourage anyone who is moved to subscribe to this wonderful publication! Enjoy and please feel free to share and/or forward to anyone you think would benefit! With oceans of love … xoxo

Click here to read the digital version of the journal. The access code is: K9HqOa

My article is on page 30. However, the entire journal is excellent! You’ll need a chunk of time to read it as it’s short story length at around 4,000 words.

I encourage anyone who is moved to subscribe to this wonderful publication to do so! Enjoy and please feel free to share and/or forward to anyone you think would benefit! With oceans of love … xoxo

PDF version: Interaction Volume 28 Issue 4

Congratulations to Lillian

September 19 2020

I’m finished. I’m done! After eight years, Lillian will be fully taking over an aspect of her self care. We have been working the past seven months on her taking it over fully. I did it for the last time about 30 minutes ago! Hallelujah!! Congratulations to Lillian!! Photo from our July 2020 Date day.

Happy Happy Happy 19th Birthday to Lillian Darnell

Today, Monday, 9.14.20, at 4:00pm PST Lillian Darnell and I will be live for about 30 minutes so her friends and YOU can help her celebrate her 19th birthday!

We had plans to go to the arboretum this morning, then a poolside BBQ with The Romano Duo this afternoon. But …. Air Quality from the fires in California is in the unhealthy range. 😢😢😢 … We will still do all planned but will have to be another day …

Please join us. She’s had a rough time, not being able to have our typical dates since mid-March. She’s not been inside anywhere since then. We hope to see as many of you as possible! Much love to you! xoxo (We will have Zoom as back up should facebook live not play nice. Last year we kept losing our connection!)

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Opening gifts.

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The “LIVE” celebration on facebook …

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The goodies. The cake looks like hell, but tasted like heaven. It’s vegan. It’s gluten free. It’s delicious. Looks had to fall by the way side. 🤪

Why so many photos blowing out the candles? Up until the 10th birthday or so, Lillian could not “blow” to blow out candles. Still takes a few times. But she can blow wind now!!

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September 20 2020

Look at this super cool gift that Lillian received from her friend. Thank you, Macy Miller! I hope she lets me help put it together.