Reblog: Poolside BBQ for Lillian Darnell’s 19th Birthday – Finally

September 28 2020

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.

Go here to see all the photographs ..

Poolside BBQ for Lillian’s 19th Birthday – Finally

Throwback Post: No One Made Her Angry But Herself

**THROWBACK POST**

May 2016

This one made my eyes sweat … Another of Lillian’s fairy tale emotion stories. The morning before she wrote this one, I was in a grumpy mood. Many times she will hook into this and catch a ride on the grumpy wave.

She was yelling at Thomas telling him that they had made me angry. I explained to her that no one made me angry except for myself with my own thoughts.

And then later in the afternoon, I read this story she wrote. As with many fiction stories that are sparked by the author’s reality, Lillian’s have a thread of her own reality running through each one. It warms my heart and causes my eyes to sweat …

I’m thinking that the series that she’s writing will be that book I mentioned she and I would write. I’m thinking Mr. Happy Tree will be the narrator (a fabulous tree that Lillian drew last spring or summer). **December 2020 Note: In fact, this story along with Lillian’s writings from age 5 – 16 years old are included in her debut book, Where Would You Fly and Other Magical Stories.**

Angry Candy Story

Once upon a time, there lived a red chewy candy who was always angry and her name was Angel. One day, Angel got angry for some unknown reason. Her candy buddies decided to investigate what could have made her angry but first, they had to look for some possible clues.

While they were investigating, Angel met with her candy friend, Sneaky Spice-Rika who was always acting innocent but Sneaky was hiding something from Angel. The investigators found strawberry flavored licorice, spices, and mint candy. So they went back to their club called Secret Detective Club to plan their next step of the mystery.

They put together a list of suspicious candy suspects with other candy suspects to talk to. The candy suspects’ were Sneaky Spice-Rika, Strawbella, and Sugarlicious.  They set out to talk to Sugarlicious first. “I did see something very unusual, odd, and peculiar this morning.” said Sugarlicious, “I saw Sneaky Spice-Rika near Angel”.  So the buddies said,”Thank you”! and moved on to talk to Strawbella but apparently she didn’t see anything strange.  Finally, they talked to Sneaky Spice-Rika and she said she was only near Angel to talk to her. So they went to Angel to get more facts and she said it was to comfort her. So the investigators went on to explain the whole story.

When Angel had heard the whole story, she chuckled and explained to them that no one had made her angry but herself. She also said that she had a bad argument with her candy parents, Coca and Choc. The investigators went back to everyone what they had learned. First, they stopped by Sugarlicious to tell her what she had thought was actually an act of kindness. Next, they stopped by Strawbella to tell her that Angel had been angry and she was made angry all on her own.

Lastly, they visited Sneaky Spice-Rika to apologize about suspecting her. The investigators thanked her for being such a great friend. Angel forgot about being angry and never got angry again. If you look closely, you can see Angel in any chewy red candy you or your friends eat.

I hope you enjoyed this story. Join us every Friday for the newest edition of Emotions With Animals!

See the full story on Lillian’s blog, by going here …

Angry Candy Story

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.

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

**THROWBACK POST**


(Team TLC – July 2014)

Written in 2014 and 2015

November 2020 Note – This writing does not flow. It appears I came back to this over several months in 2014 and 2015 adding my thoughts. I’ve left it in its original, raw state except for a bit of rearranging so writings about the same topic are grouped together.

One blood test, one phone call, one moment in time; drastically changed everything. I know more about genetics, chromosomes, DNA, motor skills, verbal skills, and now emotional and behavioral issues than I ever thought I would need or want to know. The main way that 18p- manifested for Lillian earlier in life was that she had delays with motor skills, articulation issues, and GI concerns. Now at 13 years old Lillian is very hard to understand when she speaks. She simply cannot articulate in the way most of us can. The shape of her mouth and the inability of the tongue, lips, and mouth to coordinate properly are what cause this. She is a smart young lady and has all the words and thoughts she wants to say in her mind, but simply can’t get them all out in an understandable way.

She has always had anxiety and fears concerning certain issues, had problems with unexpected changes, and an inflexibility with schedules. These issues had been mostly manageable. About the time puberty entered Lillian’s life she had an IEP for transitioning from elementary to middle school. She also came down with a bad cold turned into a sinus infection. All of these proved too much for her to handle and she imploded. So began a turn in this adventure that began so long ago.

I now find myself learning about emotional and behavioral issues and Lillian’s inability to cope with situations that cause her to panic or worry.

In December 2014, Lillian caught a pretty bad cold. At the same time we had just attended her transition IEP for moving to middle school next year. Internally, Lillian’s teenage hormones were making their appearance as she had just turned 13 in September. Illnesses take a harder toll on Lillian, even if it is just a cold. She missed some days of school, went back for one day and then seemed to get sick all over again. Her cold had turned into a sinus infection.

After the sinus infection cleared, Lillian refused to go back to school. This wasn’t just a case of Lillian being stubborn and defiant. I could sense a deep fear and high level of anxiety. I tried to help Lillian through this time by addressing and solving whatever it was that was causing the fear and anxiety. During this same time, Lillian’s ability to cope and remain calm seemed to be dissolving. Whenever her schedule was changed or didn’t work out or things didn’t go as she thought they should, she would go straight into a horrific meltdown with an explosion of screaming, hitting, pinching, and scratching. It was lightening fast with hardly any space between something going wrong (in her mind) and the explosion.

At this point, I decided that I needed professional help. In April 2015, I finally located an acceptable psychotherapist that took Lillian’s insurance to work with Lillian and I on mindfulness techniques, dialectical behavior therapy, and cognitive behavioral therapy. I know that there are medications to help with these difficulties but my inner compass is very strong in that I am supposed to try the non-medicated route first. I absolutely do NOT judge other parents for the routes they take on this complicated and complex journey. The part of me that would have judged no longer exists, thanks to Lillian and Thomas.

It was (and is) my intention to try to help Lillian be in tune with her body’s feelings and emotions so that she can recognize when anger or sadness are present. And to then have her use mindfulness techniques and emotional connection to connect with negative (and positive) emotions. First and foremost to get her past the point where she feels out of control leading to screaming and lashing out at others (myself and her brother, Thomas).

This is furthering my own mindfulness learning as I must be mindful when Lillian disconnects. I must also be patient, flexible, and learn how to not take words or actions personally. There are absolutely days and moments my thoughts go straight to, “It’s time to look into medication.” However, once the moment has passed so has the thought. As long as we are making progress we’ll continue this path. Although Lillian has not returned to school yet, we are making slow progress. I use the term we as this is definitely a team effort by all three of us.

She had one extremely huge meltdown turned into explosion this past July. We made a quick stop at the grocery store to get a few items. I was a bit overwhelmed as the store was super crowded. I was trying not to forget what we needed and to carry on small talk with Lillian. We took a few minutes to smell the essential oil perfumes and wonderful handmade soaps. Then we chose a gluten free cookie for all three of us. After this, I decided to return an item since we were close to the customer service counter. The wonderfully kind cashier offered to ring my other items since I only had a few. I accepted. Lillian had caught up with me at this point and once I was finished paying, I could sense her energy shift.

Apparently, there was miscommunication between the two of us about Lillian looking at more gluten free desserts. This quickly led to a volcanic like explosion for Lillian with screaming and lashing out at me. Fortunately, I was close to the exit doors, so I made my way out and headed to the car with Lillian screaming and yelling behind me. I quickly got into the car and invited Lillian to do the same if she was going with me. She was not open to doing any of the mindfulness or other techniques we’ve been learning.

I decided to start making our way home even though she had not calmed down. Perhaps not the best choice in that moment. She was scratching, pinching, and pulling my hair from behind. As soon as it was possible, I pulled over, turned to Lillian and screamed some ridiculously outrageous comments, and decided I must get out of the car. We needed space between us as I was in a great deal of pain from the scratches and she was a big hot mess. Once out of the car, I closed my eyes, took a few deep breaths, and asked to see the situation differently. I opened my eyes and shining up at me from the rock and dirt filled ground was a beautiful red jewel heart. I knew that was in answer to asking to see it differently and a reminder to always respond with love.

At this point, Lillian was ready to do a calming technique and I requested that she do it on her own. She got out of the car and chose to pick up a couple of rocks and study them. After a few minutes we got back into the car and drove home. We’ve not had anything of that magnitude happen since then and I am hopeful this was simply “one step backward” before more steps forward. When this happens for Lillian, one of us has to be fully present and mindful or things can escalate.

When I pulled over there was anything BUT grace flowing from my mouth. After being scratched continuously, and having my hair pulled from behind from the time we left the parking lot; I lost it. So glad I listened to my intuition to pull over and get out. It was what we both needed. I know when this happens it is not the true Lillian and we are making great progress with helping her to notice, feel, and release emotions (centered around mindfulness).

My feelings are that we are all doing the best we can with where we are in our lives; child and adult. I judge no other parent for how they choose to handle this. That has not always been the case. Where there is Love, there is no judgment. Personally, I want to help Lillian learn NOW how to process emotions so that she has a happy and peaceful life as an adult. So that she knows how to handle things when they don’t go as expected and don’t go her way.

It’s so interesting that for at least 4 years I’ve been talking about connecting with emotions with Thomas and Lillian and Lillian does NOT want to feel sadness. Goes straight from sad, to anger, to deflecting the anger in a split second. We are teaching her how to “listen” to her body for the clues that let her know she’s about to get angry.

I have much to learn from Lillian and she has much to learn from me. I know because she verbalizes what she’s saying to herself. It boils down to this: She’s not in control and she cannot be successful. We are giving her new phrases to replace those: I am in control, I can let this dissolve, I am successful. Along with teaching mindfulness activities and I take both of them through a mindfulness exercise at least 4 times a week. Definitely not an easy path, yet, for me, this is the path of Love.

Two more positive moments from the 2015 Chromosome 18 conference … one night she was having anxiety and worries about going out to eat with her friends (without me as I was having dinner with the moms … ladies night). Worried there would be stairs, worried about going to the bathroom, worried about what to eat, worried about it being too crowded. She was expanding, to use her word. I explained to her that she was expanding and that we could not talk about it and come to a solution in her current state (it was bed time too). She agreed to wait until tomorrow to discuss it. The next day when I brought it up, she said, “There’s nothing to talk about it.”

This happened with one other issue too. And I have used this several times now as it seems she wants to discuss things as we are getting ready for bed. I have been successful at getting her to wait until the next day.

She had a huge meltdown in a restaurant on our last night there. First, it took us half a day to even get out of the room to go to the local library. She slept late and took forever doing her “schedule”. This seems to be interfering more and more with us even getting out of the house. Anyway, after we ordered she began to “expand” about not having gotten to everything she wanted to do while there, being VERY sad and angry about the situation.

She was crying and getting louder. I tried to have her wait until we were done eating to discuss, but she was not in a place to agree. She screamed and pinched my arm. I could not get her to do a distraction exercise so had to resort to helping her resolve the issue so we didn’t have to leave the restaurant with me dragging her out. She finally calmed down. Thomas was having great anxiety during this as he saw all the people staring at us.

Lillian has always had anxiety and worries related to certain situations, venues, and schedules. Some of these are stairs, escalators, people with stern voices, automatic flush toilets and hand dryers, small enclosed areas and big open areas. In addition to a fear of all animals and stuffed animals. Some of this stems from difficulties with Lillian’s proprioceptive system and some from sensory processing issues.

I am still on this journey of attempting to learn Lillian’s nature. I’ve come a long way. What I do know, what my internal compass is rock solid about, is that Lillian’s contributions to humanity will not come forth in the typical way of going to school, graduating, going to college, and getting a job (or some adapted version of this).

And something else I know is that it’s okay if there’s a shift within her and she does go the typical route. I feel she is an artist and her contributions are manifesting and will continue to manifest in this way. As I write this, I realize, she’s got something figured out that many of us strive to figure out our whole lives. How to express oneself. And how to express oneself in a way that benefits humanity and spreads loving-kindness.

Lillian loves and enjoys life. In fact, she is confused when, at her prompting, I or those around her don’t stop what they are doing and BE in the present moment, enjoying life and being happy.

November 2020 Note: This writing turned into a 4,000 word article contributed to a multidisciplinary journal for the Australian Institute On Intellectual Disability, published in 2015. To read the polished and final article, go here …

My Journey With Intellectual Disability and Relationships – A Short Memoir

November 2020 Update – Six years later … We have come such a long way from this time. Thankfully, the severity and occurrences of meltdowns has drastically decreased. Lillian began using botanical oil two or three years ago. That and maturity were huge factors in helping. 

I also wrote a letter to her meltdowns in 2016 that was published by Elephant Journal. If you’re interested in reading that, go here …

Dear Meltdown: Meet My Friend Mindfulness

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.

Reblog: Congratulations to Lillian for Another Milestone

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.

Just had to share this amazing news over here, too! Go here for the original post on The Team TLC blog …

Congratulations to Lillian

Throwback Post: What Will I Be When I Grow Up?

**THROWBACK – JANUARY 2018**

Lillian Shadow on Hill 2014 or 2015(Photo of Lillian taken by Camilla in 2014)

She asked, “What will I be when I grow up?”

Dear One,

You will Be what you already Are. That is constant and never changes. You do not have to be anything other than what is aligned with your heart. You do not have to strive for labels and titles … unless these are aligned with one’s heart.

You’ve been asked many times over the years by well meaning adults, “What do you want to be when you grow up?” You have stayed true with your response to this even when the questioner did not understand your answer, even though the questioner thought that you didn’t understand their question, and pressed you for a different answer.

You Will BE what you already Are. Uniquely You. Sharing what only you can share in the unique way only you can share it. What is “it”, you may ask. It has many names. Love, kindness, compassion, unconditional love, divine love … Whatever it is called, matters not.

For when you share the gift of yourself with another, this gift will guide them in the knowing that they are loved and the knowing of their true gifts. When you share your gift with others, it in turn inspires others to tap into their unique gifts. This sharing arouses the courage in another to share their unique gifts with others.

This creates a ripple effect that can eventually travel the world over. Just your one act of sharing your true self has the power to create a shift in the world. A shift that would awaken many to the compassion, kindness, oneness, and unconditional love which is the core of each and every one of us.

You will BE what you already Are. Stay true to your heart. Follow the compass of the heart. The heart is one’s true compass.

Love,
The Fairy Princess Helper
xoxoxo

Update July 18 2020: I had completely forgotten about this! I remember being inspired to write this by the sheer volume of times that Lillian had been asked this throughout the years, probably reignited by something I had seen in social media. Her answer had always been that she wanted to be a fairy princess helper, she wanted to help people. Many did not understand her answer, or pressed her to make the answer fit into an “real” profession or career.

When Lillian was in kindergarten or first grade, she was working on a project about herself. One of the questions was, “What do you want to be when you grow up?” I remember as if it was yesterday … We were in the car, Lillian in the backseat, I asked her what her answer to this question would be. She said she wanted to be a tooth fairy. The “old” Camilla was still a huge presence in me, and I almost told her that being a tooth fairy, or fairy, was not a real job.

However, the awakened me took over and told Lillian that there were many types of fairies. Book fairies, nature fairies, flower fairies, etc. I also told her she could call whatever she does, any name she likes. The name does not matter. At that time, she said she wanted to be a book fairy. Soon after, she shifted to a fairy princess helper and has stuck with that.

I feel this question should be rephrased. I think it has the tendency to cause children to feel “less than” if they don’t have an answer, or an answer the adult does not understand. I feel they aren’t given enough messages that they are worthy and loved for simply being themselves. (A message partly coming to you from the child within me, who always felt less than and grew up to feel she was not worthy.) xoxo

(I recently changed the hosting company for this website, along with all other websites I manage. In the aftermath, my draft posts got deleted. Oh no! Fortunately, they were in the back up and could be reinstalled. However, the original draft dates were deleted. I’m taking that as a sign that it’s time to do cleanup and housekeeping.)

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 18 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 14 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

Throwback Post: Being a Sibling to One With Special Needs

(I recently changed the hosting company for this website, along with all other websites I manage. In the aftermath, my draft posts got deleted. Oh no! Fortunately, they were in the back up and could be reinstalled. However, the original draft dates were deleted. I’m taking that as a sign that it’s time to do cleanup and housekeeping.)


(Thomas and Lillian – 2010 – Geiger Way Lookout)

**THROWBACK TO 2014**

After a huge Lillian meltdown this morning which caused him to be a wee bit late for school.

I am trying to help him notice when it’s not a good idea to push Lillian. He does try so hard, but just wants to not have to try sometimes. Lillian is making huge progress, yet, we still have those moments. Thomas’ teacher shares often with me how she enjoys his presence in the classroom as he’s so empathetic and compassionate.

I have recently pulled back from intervening when they decide to be unkind with one another. I’ve explained that I have taught them methods to use and I model those methods. It is up to them whether they use them or not.

This morning it escalated, I remained calm and not involved. It escalated and escalated and escalated. There was screaming and door slamming. I remained calm and not involved. I got scratched and pinched, I remained calm. I kept emphasizing that I’d be happy to help her get calm and to let me know when she was ready. And. Finally, Lillian asked for help in calming down. I walked her through a meditative breathing exercise and we moved on …. I don’t always remain calm. I did this morning and it makes such a huge, huge, huge difference when I do. Mindfulness is an amazing way to live …

Yes, this. I am blessed and grateful that we are a team. I am having the time of my life on this journey with them. The joy, suffering, happiness, peace, love, and all … xoxo

**June 2020 Update** – Six years later. I’d love to say that Thomas and Lillian get along fabulously now. They don’t. Lillian is 18 and Thomas is 14.

Thomas has much anger and unsettled feelings about being Lillian’s sibling. The years of horrific meltdowns. I mean we just had one at 1:30am this morning. I’ve told him as often as I could remember that it was okay to be angry, okay to have whatever feelings he has about the situation.

Much of my time being spent with Lillian. Not having a typical sibling, with a typical sibling relationship, doing typical activities as a family. These all became too much at some point, with him internalizing much. This is something we will be addressing at some point this year.

Lillian has much jealousy towards Thomas, for all the things he can do that she can’t do. Jealous of my time spent with him, jealous even when he and I speak to one another. Jealous may not be the word to use here, it’s quite possibly stems from something else. She may have internalized some trauma from her childhood. All issues to be addressed when she is ready to do so.

I do not share to receive comfort or sympathy. I share as that’s what I know I am to do. I share so other siblings and parents know they are not alone. As I know that in the past I have felt guilt and shame when observing a sibling with their special needs sibling getting along fabulously, with compassion and love. Wondering what I had done wrong. I now know I have done nothing wrong. People are just different.

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 18 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 14 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

Lovely and Magical Book – Where Would You Fly on Curled Up With a Good Book

Thank you to Michelle Whitman for this lovely review of Lillian’s book, Where Would You Fly and Other Magical Stories

This is a lovely and magical book, full of wonderful short stories where you can let your imagination drift and enter the unique world of Lillian. A collection of stories and poems written by Lillian throughout her life, will transport you to new enchanted and magical worlds, full of colour, rainbows and happy endings. The photos and drawings of Lillian are an added beautiful touch.

Personally my favourite bit about this book was the section on Emotions and Feelings. Camilla (Lillian’s Mum) explains at the beginning of the book that this section was born from them working together to understand and process emotions and from that, Lillian produced “Emotions with Animals”. There is a lot both children and adults alike can learn from this section and it really resonated with me, and how I try to live my life. Each mini story talks about a different animal and emotion, for example ‘Calm Monarch Butterflies’ and then there is Lillian’s summary of ‘How To’ (e.g How To Be Calm). There is some fantastic advice in this, and every single one of us could learn something!

Throughout the book there is a mix of short stories (fairies & princesses, legends, tales & adventures), poems and songs – each with their own unique tale to tell. This book is adorable and inspirational, and if nothing else will make you smile. We all love a wonderful and happy story, and Lillian certainly delivers this along with plenty of inspiration and a touch of magic .. Follow this link to read the full review …

Book Review: Where Would You Fly? & Other Magical Stories by Lillian Darnell

Blessings,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

“Words of Alchemy” has arrived, December 2019! 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 18 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 14 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

 

Survival of the Reno Downtown Library

In early November, Lillian and I survived visiting the downtown library so that Lillian could sign volunteer paperwork and get the fingerprinting form. That’s the one library we cannot visit due to Lillian’s depth perception, balance issues, and an uncooperative proprioceptive system. It’s a 4 level building with huge open spaces and staircases. Makes her head spin and legs shaky. It’s beautiful and I love this location. Just not a good fit for her!

There was a huge amount of anxiety over having to go there. I had spoken to them about her difficulties and they were going to let us in the back door so she didn’t have to walk through the front door and through the huge open areas. My contact was not answering the phone, so I figured we’d give it a shot going through the front doors. Didn’t go so well. We inched along with Lillian getting more and more uncomfortable and beginning to have an anxiety attack.

We made it to the elevator and I got us off one floor too early. Ugh! We inched towards a corner surrounded by book shelves and two walls to help her feel better. And … then we were stuck there! I asked a library worker to let them know we were here, but stuck where we were! HA! Someone came and let Lillian know if we got back on the elevator and went up one floor we’d be directly by her office door so she wouldn’t have to see the open area.

That did the trick! After signing paperwork, she took us back down the elevator and let us out the back door directly by the elevator. Whew! I am deeply proud and happy for Lillian having not spiraled down further while in the midst of it. I helped her slow down her breathing, breathing deeply, and distracted her by looking at books and talking about them.

As I’m stuck on the 3rd floor of the library, in the Sci-fi section, in a corner, with Lillian attached to my arm with a death grip … I’m thinking how utterly hilarious this is …. Lest I begin thinking how not hilarious this is and spiral down into my own meltdown. Good material for future books. Life is the best material …. for living, for sharing, for meeting our edge …

(November 2 2019)

Blessings,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

“Words of Alchemy” has arrived, December 2019! 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 18 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 14 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

The Road Trip Adventure That Was the 2019 Chromosome 18 Family Conference

In July we attended the 2019 Chromosome 18 Family Conference in Colorado Springs, Colorado. It was the 4th time since 2008 that I had driven to the conference. I finally learned my limits with this drive. In this case, the fourth time’s the charm!

I posted a daily account of the adventure on our Team TLC website, loaded with great photos, especially the photos of The Garden of Gods.

The Wild and Crazy Journey to the 2019 Chromosome 18 Family Conference in Colorado Springs

I want to once again thank the Good Samaritan’s we encountered along the way, the wonderful people who donated to our fundraiser, The Romano Duo (my mom and step-dad) and the angel mom who paid for us to stay an extra night so I could have one more day to recover from the horrid norovirus that swept through the hotel guests. 

For the most part, we enjoyed ourselves as much as possible with the drive there and back, and while at the conference. If you take the time to read the post linked, you’ll see it wasn’t all peaches and cream. There were some definite unlovely and maddening experiences. Horrendous traffic, car accidents, car problems, melt downs, and the nasty norovirus that swept through hotel guests and all three of us. The last unofficial count I saw was about 200 people got hit with it! 

Thomas and I had a beautiful time visiting The Garden of the Gods. Definitely check out those photos in the linked post. Magically beautiful. We also had a lovely rest stop at The Salt Flats in Utah; which was deeply refreshing. Here are a few photos from each of these wonderful places.

Lillian had many firsts and conquered a few fears along the way. It’s always a blessing to see her reunited with her best friend and making new friends too!

Ending with what I’ve learned about my limits with attending the conference. The first drive was to Las Vegas in 2008. That was an easy 8 hour drive from Reno to Vegas. The second time was another easy 8 hour drive from Reno to Salt Lake City in 2015. The third was a nightmare 3,400 mile drive from Reno to San Antonio in 2016. I wrote about that one here and here and here.

I have learned that any destination 9 hours or less is do able for me. Over that, where we have to make a stop and stay some place for the night is too much (for me). Yes!!! For continuing to learn about my own limits. From this point forward it will be easier to decide how we will get to the conference every summer.

At some point in the future, it is my plan for Lillian to travel to the conference without me. If she and Thomas can reach a point of getting along and respecting one another, they can travel together. Or, if that doesn’t happen, hopefully one day she can travel with a friend, or even alone. That’s the plan and we’re making our way to it’s fruition! 2020 Conference will be back in San Antonio! See y’all there!

Blessings,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

Coming Soon!! “Words of Alchemy” is the latest book coming to life! Coming Fall 2019.

Amazing news! My 17 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 13 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

The Number 18: Happy Birthday to Lillian Darnell

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 lil 4 pound sweetheart
as I wondered and dreamed
about your journey to adulthood.

Wow! Did we take giant
twist 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 it’s 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

Lillian put together 18 wishes for her 18th birthday; which she shared in the live facebook celebration.

Here they are ….

1. I wish Macy, Lauren, Kaitlin Baker, and Rebecca could come to Reno, NV.
2. I wish to be able to drink out of a cup/glass without a straw.
3. I wish to be fearless.
4. I wish for infinity art and crafts supplies.
5. I wish for infinity clothing.
6. I wish to be able to travel around the world with my friends and/or by myself.
7. I wish for the Earth to be healthy again.
8. I wish for the Earth not to die.
9. I wish to be less picky.
10. I wish to live with my friends.
11. I wish to be less vulnerable to spicy hot stuff.
12. I wish to have a dream home.
13. I wish to have a dream vehicle.
14. I wish to see Hawaii.
15. I wish to go to Florida.
16. I wish to have infinity photography supplies.
17. I wish to have more friends.
18. I wish to have two beds.

We celebrated all week as Lillian had a long list of things she wanted to do. It was a full week of shopping for new fairy wings, going for walks in her favorite places, going swimming, eating fries and desert at her favorite place, having dinner with The Romano Duo (grandparents), and ending with a live facebook celebration.

Blessings,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

Coming Soon!! “Words of Alchemy” is the latest book coming to life! Coming Fall 2019.

Amazing news! My 17 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 13 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.