Tag Archives: family update

Celebrating the 52nd Birthday – Camilla Downs

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On February 26, 2022 I turned 52 years old. I seem to be behind in many non-urgent tasks these days. My body decided to get my attention once I hit 50, along with being extremely exhausted. I’ve had my hands full addressing some health issues, along with addressing urgent or deadline intense matters for Thomas and Lillian.

We had a low-key, mild celebration. The Romano Duo and my brother came to our place, with Frank kicking things off by making me a couple of virgin bloody marys. We had lunch together, opened gifts, and then enjoyed a vegan, strawberry rhubarb pie.

We also celebrated a win for Lillian. She has pretty much conquered her fear of cats, so we lit a candle for her to blow out in celebration. There’s something to be said for exposure therapy. It absolutely worked magic when Thomas finally convinced me to allow him to adopt a cat. Chad Basil the First came into our lives in December 2021 for Thomas to care for and have as emotional support. Lillian has slowly warmed up to him, at about the same pace as Basil has taken to open up to us.

It’s been all I can do to keep up with these matters, with my precious walks growing less frequent. I’m hopeful that I’ll be able to resume the frequency soon. For a while now, I’ve not been posting as much on social media as I have in the past. I’ve also not written anything for a couple of years. I’ve been, and am, numb and exhausted. I am in the midst of addressing the health issues, with hopes that this helps to lift my spirits.

I have just completed four weeks of physical therapy for my neck, with four more to go. This being an initial step before having an MRI. I’m seeing a GI doctor to address gut issues. I’ve done a SIBO test, and am awaiting the results. I’ve had a full gut ultrasound which indicated a dilated (enlarged) bile duct. I’m now scheduled for an MRI of my pancreas, gallbladder, and all ducts to determine the cause of the dilated bile duct. I’m also scheduled for a colonoscopy and endoscopy in May. The colonoscopy is just routine as I’ve never had one. But the GI doctor added the endoscopy to see if we can determine the cause of some additional pain and discomfort. Additionally, I’m scheduled with a cardiologist to have an echocardiogram performed.

We continue to have many beautiful and exciting events and wins come into our life, too. I’ve posted about those as they happen. I’ve always been one to keep the unlovely moments of life to myself until I’ve had time to process it and/or I’ve determined the solution. This is the Way (for me). I love The Mandalorian, by the way!

Team TLC is looking forward to attending the Chromosome 18 Family Conference this summer in San Antonio, after it has been held virtually the past two years. Our future is bright, with many lovely moments, trips, and celebrations on the horizon. The time I currently find myself seems to be a grease-the-wheel, fill my cup moment as we prepare for the exciting times that await us.

I share with all of you, as that’s who I am, and who you know me to be. This is my path, to be authentic, vulnerable, and to let others know they are not alone. xoxo

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 16 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

News: Neurodiversity Learning Continues – Family Update

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January 26 2022


(Photo from a January 2022 walk with Thomas – Galena Forest)

I received the results of Lillian’s neuropsychological evaluation this morning. It was as expected (plus some), however, overwhelming with much parent guilt over not having done this earlier in her life. Hot tears have been flowing on and off most of the day. This also brought relief in knowing the “why” of some issues.

I feel like I’m the middle of the rope in tug of war between helping Thomas get enrolled for dual credits for his last two years of high school, along with figuring out college, and thinking about all that needs to be addressed with Lillian. Plus addressing some of my own medical issues. We’ve got the route(s) figured out for dual credits. It’s just taking all the steps, filling out the forms, and looking into colleges to be sure the credits transfer to the 4 year degree.

I have been letting myself feel sad and sorry for myself today, as I do this all alone. Some days I’m just so damn tired. I will walk into the overwhelm, the tiredness, and let myself feel it all. I don’t believe in smooshing these kinds of feelings down, piling positivity on top of it. That does no one any good. I believe in physically feeling the shit of life.

This evaluation assessed more than autism. I’ve not shared the results as that is up to Lillian as to whether or not we share. She does have some hard core disregulation happening. These diagnoses have opened up therapies that insurance would not pay for without the diagnosis, and informed me of specific therapies and tests I did not know about. Therapies that would have been incredibly helpful earlier in life. Yet, we will start where we are.

Then, tomorrow, or the next, or the next, I’ll move back to knowing that I’m a damn cheetah, because I can do hard things. (So glad I read Glennon Doyle’s book and learned that phrase! Highly recommend her book, Untamed.)

I’m not posting for sympathy. I’m sharing because that’s part of my processing. Getting it out of my head. And I know if I’m feeling this way, others I know may be feeling this way. 🌹🌹🌹

**March 2022 Update** Things are moving along nicely with figuring out Thomas’s path. We’ll learn any day now if he has conditional approval where he’s applied, and we’ve lined up alternatives just in case.

Moving much slower with Lillian. Although she has finally looked at the report following her assessment, she and I still need to discuss next steps. She seems resistant to move forward. Hopefully, with time she will become less rigid about it.

Moving forward with addressing my health issues, too. I’ve begun twice a week physical therapy to address neck issues; which will continue for 8 weeks. I purchased a stand up desk, that adjusts to all positions so it can be used as a seated desk as well. And I’m taking the first steps in addressing my GI issues.

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 16 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.