Reblog: Lillian and Camilla November 2020 Date Day

November 24 2020

Lillian and Camilla November 2020 Date Day

French fries from Noble Pie Parlor – Summit Reno for both of us, with a Trader Joe’s spicy lentil wrap for me.

Dessert of a white chocolate dipped cookie for Lillian and a couple of squares of this amazing new chocolate I just discovered at Trader Joe’s.

Then we took a walk in one of our favorite places, followed by a drive around our old neighborhood.

  

   

Follow the link to see more photos …

Lillian and Camilla November 2020 Date Day

Full of Imagination and Wonder – Where Would You Fly Review

Thank you to Helen for this beautiful review of Lillian’s book.

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?

Go here to see the review on Helen’s website …

#BookReview for Where Would You Fly? by Lillian Darnell

For more information about Where Would You Fly, go here …

http://www.WhereWouldYouFly.com

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.

Exciting News – Lillian’s Imaginarium is Open

Hey! Hey! Here’s the huge announcement regarding my daughter, Lillian Darnell’s, creations!

I have been working on this for months, with the help of a very incredible friend! Thank you to Kate Raina for guiding me, and getting Lillian’s creations in the proper format for digital printing and professional printing.

There are more items to add, I just needed to get this thing “live” to push myself! If you use etsy, please favorite Lillians Imaginarium. And please let me know if you see anything out of sorts. I have no idea what I’m doing, I just figure it out as I go along. Thanks to everyone who cheers us on, and supports all of our creations. Oceans of love to all of you! xoxo

For anyone new to my blog, Lillian is my 19 year old daughter. She has a chromosome difference called 18p- (which means she is missing the short arm of chromosome number 18). This affects 1 in 55,000 people. This manifests in difficulty with speech/articulation, emotional regulation, balance, and depth perception, anxiety, sensory issues, inflexibility, chronic stomach pain, and pain in general. She will be tested for autism in the near future, which will guide us, and help in better understanding Lillian.

Check it out …

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: 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!!! 🏳️‍🌈🏳️‍🌈🏳️‍🌈

     

Go here to see the original post on the Team TLC website …

Lillian Darnell – First Time Voting

Reblog: Camilla and Lillian October 2020 Date Day

October 10 2020

Yesterday was the Lillian and Camilla October 2020 Date Day

First stop: I picked up an order of fries for Lillian and we had a great lunch at home.

Next stop: A trip to Wilbur May Arboretum. So much gorgeousness = tons of photos!

Last stop: Lillian picked out her pumpkin and chose a sugar cookie with red icing, in the shape of an apple.

     

                                

Go here to see the rest of the photos …

Lillian and Camilla October 2020 Date Day

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: 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

Reblog: Walks of Love With a Wild Sunset While Being Hot and Humid

Walks of Love With a Wild Sunset While Being Hot and Humid

August 15 2020

After dinner walk with Lillian last Thursday. Love these walks.

  

Follow this link to see more photos ..

Walks of Love With a Wild Sunset While Being Hot and Humid

Poetry: Sunset Walks of the Soul

August 11 2020

Sunset walk with Lillian.

Sometimes parenting is a bed of roses.
Sometimes parenting is a bed of thorns.
Sometimes I know exactly where I’m going.
Sometimes I don’t know whether I’m coming or going.
Yet, the walks I take, the scenes my eyes frame, the photos I take, being in nature, always brings peace and comfort.

PS:This parenting gig, especially single parenting, is not for the faint of heart.

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.