July 14 2023
Easing back to Reno with a walk and an amazing, refreshing swim.
Our flight landed about 11:30 last night, finally getting to bed about 1:30am.
We had an incredible and fun time this year. I forgot to post the photo I took of the Syndrome Coordinators in the closing slideshow.
Thank you to Matt & Julie who hosted this year’s conference. You did it!!!
July 23 2023
I had the best date tonight! Thomas leaves tomorrow for two and a half weeks, visiting friends in Philadelphia (and hopefully connecting with our C18 friends, Mike & Cierra!)
Thomas made me laugh so hard. Especially when they said I’m not like any of their friend’s parents, and that I’m normal. What? I’m normal. Thomas says they mean I’m a normal human. We had such rich conversation tonight. I plan on doing as much of this as possible before they leave for college next summer.
We went to Royce for burgers. I had the portobello burger. So good. Then stopped for ice cream at Icecycle Creamery for Thomas.
Ending with a stop at Aubry Harris Park, talking about the many years of memories here and Bartley Ranch. Car picnics while enjoying the view, scavenger hunts, and walks. My heart bursts with joy that we had all of these experiences together.
July 16 2023
Captivated by the clouds this morning.
July 17 2023
Stunning clouds during this morning’s walk.
July 29 2023
Clouds. This morning to this afternoon.
July 29 2023
This morning I’m grateful for Discord. Several years ago some teens met in the gaming world. They became friends. They met in person last summer, with one of the parents hosting them in New Jersey.
This summer, a parent is hosting in Philadelphia, with one of the friends coming all the way from The Netherlands! The teens created a group Discord message including all the parents. I love this technology! Thomas gets to have these amazing experiences, and I, and the other parents, get to follow along and know they are safe and happy. Life is beautiful. 🖤🌸🖤
July 25 2023
Monday Night Poetry last night was so deeply moving. I am captivated and inspired by these beautiful people. I hugged, I laughed, I smiled, and I cried. That’s some amazing poetry (and people) that does that to you.
Since July is Pride Disability Month, I read the 2019 poem I wrote to Lillian when she turned 18 years old. Then I read some of Lillian’s poetry and I read a poem written by our 18p- friend, Hannah Belsterling from Oregon, titled Different Type of Heroes.
The Number 18
Today is your 18th Birthday.
Lillian Paige Darnell is 18 years old today.
I can still see you in my mind’s eye
as a wee 4 pound sweetheart
as I wondered and dreamed
about your journey to adulthood.
Wow! Did we take giant
twists and turns,
paths less traveled.
Little did I know as I snuggled
you close, sang to you (sorry about that),
and read, read, read to you;
that the number 18 would come
to be a powerful number for you,
for us, in more ways than we could imagine.
When you were 3 years old,
As we sat eating dinner,
As the phone rang,
As the pediatrician delivered
news – 18p-, she said,
missing the short arm of
chromosome 18, she said –
that rendered me speechless,
with tears sliding down my face
into a dinner I could no longer eat.
Little did I know at the time
that this was not the horrible
news I assumed it to be.
Oh, yes. Life changing, for sure.
Yet, not in the way my mind
led me to believe in those first few weeks.
There is no way on this Earth
I could have foreseen how
life changing this would be for me.
Life changing for me so as to
let you be who you came here to be.
For that to happen unconditionally
and organically, I had much learning to do.
Not just learning about genetics,
chromosomes, DNA,
and the effects of deletions of genes.
That was the small stuff compared to
the enormity of the path that lie ahead.
As you step into adulthood on this day
It is my deepest hope that
I have made more decisions for
the highest good, than not.
It is my deepest hope that the times when I have
remembered to share and be unconditional love
stand out and far outweigh the times when
I have not been at my best.
May the wishes you wish come true.
May the dreams you dream become reality.
May the sunshine light your way ever more.
May the moon teach you its secrets.
May the birdsong always sing sweet melodies to your heart.
May you step into adulthood
with iridescent rose gold fairy
wings of the highest and brightest
as you take flight on the next
greatest adventure of your life.
I love you
I honor you
I respect you
I am grateful for all that you
have taught and continue to teach me.
You are You
And You Are Perfect!
Love,
Camilla
Mom – ©Camilla Downs
Group photo & photos of poets by: @mondaynightpoetrynv
July 18 2023
It’s nearly impossible for me to describe how much I love being in the water.
I had a luxurious swim this morning after my walk and HIIT workout. Felt delicious.
Also, cool clouds and lamppost outside of Shim’s Surplus last night.
July 21 2023
Umm, sir, what are you doing?
Came home from my workout to this. Chad Basil the First, so darn cute, even when he’s on the table, and he’s not supposed to be. 🖤🖤🖤
July 18 2023
This arrived in the mail just before we left for our trip. I’m so happy for and proud of Thomas that I could just burst, showering anyone near with love confetti. ❤️🎉❤️
**THROWBACK POST**
December 3 2012:
Thank you tons and tons to Lorna of Special Needs Book Review for sharing about ‘D iz for Different’!!! Check out the FB page .. GREAT resources y’all!
“Feelings of isolation and overwhelm keep special needs parents stuck, especially when coupled with deeply ingrained erroneous thought habits,” said Ms. Downs. “Special needs parents can unknowingly isolate themselves and begin viewing their lives in a negative way. These findings from the discussions and interviews that went to the writing of D iz for Different have been further confirmed by the hundreds of discussions that have been generated since its publication in May of 2012,” she added. Downs wrote and ….
Special Needs Book Review is pleased that yet another author agreed to introduce her book to our readers. This guest post is by Camilla Downs the author of D iz for Different – One Woman’s Journey to Acceptance. Since the book’s publication, Camilla Downs has undergone her own professional transformation with a career change from social media consultant to special needs parent coach and mentor, offering hope and guidance to others parenting kids with special needs. Congratulations Camilla on all your achievements! Thank you so much for sharing your story with us. First, who is Camilla Downs?
Camilla Downs is a special needs parent mentor, guiding parents to help them decrease feelings of overwhelm by shifting their views and showing them they are not alone. Her book, D iz for Different – One Woman’s Journey to Acceptance, was published in May 2012. The book offers Ms. Downs personal experiences in facing and overcoming life’s trials with grit and humor, along with providing practical “Tips for the Journey” throughout the book. Others parenting kids with special needs will be able to relate to Camilla’s journey.
More About the Author
D iz for Different – One Woman’s Journey to Acceptance by Camilla Downs will be of interest to others parenting children with special needs. Camilla Downs is also an advocate of living an adventurous, inspired and different life than expected. With these new life experiences, Camilla has now become a motivational speaker.
Team TLC helps parenting Kids with Special Needs Camilla is mom to 11 year old Lillian and 7 year old Thomas. Lillian is a child with special needs who was diagnosed with 18p- when she was 3 years old. They call themselves Team TLC and share their journey on the Team TLC website .
What Is 18p-?
D iz for Different – One Woman’s Journey to Acceptance- Powerful Truths for Others Parenting Kids with Special Needs by Camilla Downs
Camilla Downs is a Reno-based single mother of two children, one of them with a significant chromosomal disorder. Ms. Downs’ personal struggles inspired her to write D iz for Different – One Woman’s Journey to Acceptance specifically for parents of children with special needs. Downs’ work underlines a clear message: You need not feel isolated and overwhelmed. She offers this group of families, now numbering in the millions in the U.S., inspiration, hope and specific advice and actions to help them become unstuck and more effective in their personal and professional lives.
“Feelings of isolation and overwhelm keep special needs parents stuck, especially when coupled with deeply ingrained erroneous thought habits,” said Ms. Downs. “Special needs parents can unknowingly isolate themselves and begin viewing their lives in a negative way. These findings from the discussions and interviews that went to the writing of D iz for Different have been further confirmed by the hundreds of discussions that have been generated since its publication in May of 2012,” she added.
Downs wrote and self-published D iz for Different in less than a year, prompted by her experiences as a single parent devising creative solutions to life’s challenges, including financial struggles. Friends and professionals who saw the value of a self-help book geared towards parents of special needs children donated services including the book’s cover artwork and design, editing, proofreading, interior layout and design.
Endorsements for D iz for Different include Julie Zigler Norman, author of Growing Up Zigler: A Daughter’s Broken Journey from Heartache to Hope, and Jim Stovall, Emmy award-winning best-selling author of The Ultimate Gift.
Here is a short book trailer of “D iz for Different”
Amazon reviewer, Kathy Buchanan said, “An uplifting and honest book about facing life’s challenges. The book teaches you that how you respond to adversity is within your control and that you can still be happy even when circumstances are less than perfect…”
Camilla Downs author of book on parenting kids with special needsIn another Amazon review, Liz Arches said, “A is for Amazing, B is for Beautiful, C is for Camilla and Courageous…When you see someone who is making such a fantastic job of parenting in difficult circumstances as Camilla is, it can be awesome in the sense of ‘daunting’ as much as ‘inspiring’. It might be hard to imagine that you could ever do anything like the same. But first-time author Camilla is happy to admit that none of this came easy to her, and to acknowledge that it doesn’t come easy to anybody. She just wants to share the positive attitudes and techniques that have worked for her and which might be helpful for other parents, offering parents the opportunity to enjoy every minute of every day with their children. And it’s all presented in short, pithy chapters, so you can get on with that enjoyment all the sooner!”
July 22 2023
2023 Northern Nevada Pride Parade and Festival
So much fun. It was our first, and the VIP tent is definitely the way to go!
Ran into some of my Monday Night Poetry friends.
July 23 2023
I had so much fun yesterday at the Pride Festival, and continuing the celebrations last night at The Emerson. Temperature topped at 104. 🥵 I went from 10:00am to 11:00pm, dripping in sweat the entire time. I’m tired today. 😂🥱🤣 Worth it. It was fun to be surrounded by happy people all day.
July 21 2023
We’ve known each other since 2007, meeting at an eWomenNetwork networking event at Tamarack Junction.
This morning we met for a coffee chat. What fun!! It was great seeing you, Donna! Thanks for buying a 5 pack of my cards!
