Five Moms – True Grit

April 20 2024

Firecracker. The grit and fire in this photo just may cause it to burst into flames. 🔥 🔥🔥 Five moms with kids with special health care needs, disabilities, special needs. Skilled at finding and getting answers, and getting things done. We all work for NCED’s Family Navigation Network. 🔥🔥🔥 Love you ladies!! ❤️❤️❤️

Breathing a Huge Sigh of Relief

March 21 2024

It is done!! 🎉 Two hours of reviewing and signing. I’m so freaking excited to have this off my to do list. Thank you André Sam!! 🙌🙌🙌

(I mean, I still have pretty much no assets, nor money. But this gets everything ready for future abundance, and most importantly, gets everything as it needs to be for Lillian once I’m done dancing on Earth.)

Throwback Post: D iz for Different Review: Invaluable Information

**THROWBACK POST**

October 9 2012:

Thank you Mark Sogard for the GREAT Amazon review … appreciate it tons and tons!!

“While it is a breath of fresh air to see a book written for parents of special needs children,do not think that if you don’t have any special needs children you won’t get anything from this book. Not only does it contain invaluable information for special needs parents, it contains inspiring uplifting tips for the journey at the end of every chapter-and who doesn’t need that type of help in this fast paced society that we live in? Very well written and inspiring.”

Do the Things and Do Them With Delusional Confidence

November 9 2023

My furry friend from EQuus Insight says, “Do the things. And do them with delusional confidence!”

Last week I spoke to a UNR class of undergraduate and graduate students. They are in a course about working with families, all in different programs (elementary education, psychology, speech pathology, social work, and special education). It’s a class that is intended to provide students with knowledge and practical tools concerning the history of parent advocacy, current issues with special education and general education systems, and empirical possibilities to reimagine how to better serve families raising children with disabilities. The goal of having parents as guest speakers is for students to learn directly from us and our experience.

It was incredibly fulfilling with my 30 minute time slot turning into an hour. Last night I received a message from the instructor that the students had referenced my presentation several times so she knows it hit multiple ways for them. I am someone who doesn’t fully see, or have it really soak in, the things that I do and say. I’m just doing and saying what comes naturally for me. Receiving feedback such as this, helps me to know I’m on the right track, and more importantly, that what I’ve said or done has been meaningful. Isn’t that all most of us want?

Thank you to everyone who has offered encouraging feedback throughout these past 20 or so years. I didn’t have as much confidence, and even less experience, when I began this parent advocate journey. That’s a different story these days. With experience and reaching the point of knowing what I have to say is meaningful, with a dose of “I don’t really care if it’s not, I’m saying and doing it anyway”; I have a solid foundation of confidence tethering me to this wild, wonderful, messy thing called life. Walk this way. This is The Way. 🖤🖤🖤

 

Throwback Post: D iz for Different on Special Needs Book Review

**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!”

https://www.specialneedsbookreview.com/2012/12/01/d-iz-for-different-parenting-kids-with-special-needs/

Latest News: Celebrate with a Love Train – I Did It!


(Photo of me at Washoe Lake – 2016)

June 25 2022

I just paid off the last of the debt incurred during the 8 years of financial struggling we went through. 🎉🎉 The financial struggles finally came to an end in the beginning of 2020.

I look back at myself during those times, living with heaviness like a storm cloud that never dissipates, with awe and appreciation for how I managed.

It all began in 2006, with a separation, followed by divorce in 2007. Absolutely everything was in my name, as the person I married had poor credit. I had excellent credit. I paid for things as long as I could, using all savings, all retirement money, giving my car back to the bank, until I had to file for bankruptcy in 2009.


(Photos of us having a “going away” party for the car)

With poor credit, I could not get approved for any type of credit. We lived off of what money I earned, Lillian’s SSI, and about $300 in child support. Then when I finally was approved for credit, we lived off of credit, paying the minimum each month, just to borrow from it again the next day or so. It was an incredibly draining time, emotionally and physically.

My way of dealing with much of our experiences during that time was to make everything an adventure. For my sanity, I had to do this. Living as a family of 3 in a 1 bedroom, 1 bath 800 square foot place for a little over 4 years began as an adventure, ending with feeling like a caged bird set free. Not having enough money to pay for food, rent, utilities, with a constant thought stream of “How am I going to pay for this?” is exhausting.

Having this experience, along with being a parent to Thomas and Lillian, has been absolutely life changing. The Before Camilla was a judgmental, stuck-up, non-empathetic, it’s-your-own-fault-you’re-in-this-mess, take-care-of-it-yourself person. I mean, I was still a nice person, but I cringe at some of those old beliefs. Life took me by the hand and said, here, have these experiences and see if you feel the same.

This melted the hard shell surrounding my heart, causing it to expand with empathy, love, and understanding for my fellow humans. I wish I could have gotten to this place without having to have had the harsh experiences. Yet, for some, this is what it takes.

I do not share this for sympathy. I share as that’s what I do. I share so that you can celebrate with me. Celebrate for yourself, too. Celebrate your own resilience with me as I celebrate mine.

I hadn’t intended for this to be so long! Once I get going, I can’t stop! May we all shed the hard shell surrounding the heart. 🥰🥰🥰

I don’t know how I would have made it without the help of my Mom and Frank, my Daddy, and many loving friends. Thank you all so very much!!

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.

 

Throwback Post: Float Your Boat

**THROWBACK POST**


(Photo by me, taken during a 2017 Walk)

December 11 2017:

After an extremely rough afternoon, what a blessing to receive a sweet, loving, kind, and generous message … Just the push I needed to bring on the sobbing so I could connect and release ….

When you have one with difficulties in the executive functions area, it is nearly impossible to suggest spur of the moment activities. In Lillian’s case a meltdown is going to happen 95% of the time.

Yet, I continue to try. We have a blu-ray Christmas movie to watch from the library as they had no regular DVD of this movie.

I figured we could watch it at the lodge in the theater as their equipment will play blu-ray. (I use a really old portable DVD player plugged into a projector for our movie watching as we don’t have a TV.)

I looked on the library website and saw we would have to return the movie on Wednesday so I suggested we head on over and watch it. Well, at the same time, I must have given my patience a vacation. And, invited every worry and concern that has been bothering me over the past three months.

Two kids having meltdowns, one mom having an outburst, and two hours later ….. We are still out of sorts … but this wonderful and generous message was exactly what my heart needed ….

Sharing for anyone else who is having an off day, anyone who gave their patience the day off, or anyone who invited worry and concerns to cloud their day … From one human to another; I share a loving, warm, heart hug with you … And say .. You are not alone. Be still. And know …. xoxo

I find when I am already in “Why me victim mode” and my thoughts are full of worries and concerns that having nothing to do with a current incident … That’s when I lose it. So … when not in that meltdown moment I practice mindfulness and meditation and walks in nature so that I can have a balanced and peaceful perspective most times. Yet, we are human, so that’s not going to happen every time … And … That. Is. Okay …. xoxo

I have felt incredibly out of sorts and in a huge fog lately. Along with some anxiety. I know when I feel anxiety it is usually due to something surfacing that it would be best for me to connect with so as to release. Sometimes I forget that, though, and resist …

Most times if I would quit trying to row the boat and just let that sweet little boat float through life, peace would be more consistent …. For, I fully believe that life knows what its doing and has my back …. 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 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.

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.

Photography and Poetry: What if it Were You

The Vintage Lake with Empty Bench February 2016

He’s frustrated
He’s not sure how to handle it.

He lashes out
He says unkind words
He insults
He teases.

He’s not sure how to handle it
He’s frustrated.

The mom tells the son
that it is okay to
have these feelings.
Feeling angry, sad,
frustrated is okay.
These feelings are valid
simply because he has them.

He does not understand
why the sister behaves
the way she does.
Does not understand
the inflexibility.
Does not understand
the fears she harbors.
Does not understand
the massive and, at times,
violent melt downs.
Does not understand
the anxiety that
can lead to a melt down.

He becomes critical
and desires something
be done about the situation.
He feels the mom blames
the missing chromosomes
for the sisters behavior.
He feels that the mom blames
him for being angry and upset.

The mom lets him know
that it is okay for
him to be feeling this way
He is not wrong for
feeling frustrated
and angry.

The mom only asks him
to think about this …

What if you were her?
What if …

You could not speak clearly so that others understood you?
You were in near constant pain almost every single day?
You had balance issues and fell constantly?
You were much, much shorter than your peers?
You were much, much shorter than your YOUNGER sibling?
Your body did not cooperate with accomplishing tasks?
You could not easily use a spoon or butter knife?
You could not drink from a glass without a straw?
You could not easily brush or floss your teeth?
You were the one without lip closure?
You were the one with hand tremors?
You were the one with fine motor skill difficulties?
You were riddled with anxiety and irrational fears?
You were the one with an entire section of your 18th chromosome missing?

What if this were you
and not the other?

The mom was not telling him
that these difficulties
are excuses for being
unkind to others.

Simply to ponder
what one’s life would
be like if all that is
easy and simple vanished …

Ponder if it all became
difficult and a struggle …

Simply ponder …

The mom let him know he
could continue to feel
and believe what he chooses.

The mom will not force
her opinions of
the situation upon him.

The mom simply asks him to ponder.

And the mom will ponder
what it would be like
if she were the sibling
to the one …

The mom simply asks him to ponder.

And they shall ponder.

-©2017, Camilla Downs

Empathy has within it the seed to change the world. The more of us that plant and cultivate this seed, the more the world will shift towards peace. -Camilla Downs

I posted this on facebook first and the following are my responses to friends comments:

I can literally feel my heart breaking when Thomas and Lillian are arguing and being unkind to one another and that pours through into these writings.

I can be quite harsh with myself about my parenting skills; thinking I screw it up more than I have it heart aligned.

These are times that journal writing proves so helpful as I remind myself that I’m doing the best I can with where I’m at and give myself a good reminder to love myself. No matter what. Alongside that is when dear friends give me a good reminding too …

It was not my intent to cause anyone to feel less or unvalidated. We are all traveling a unique path; yet, with many, many similarities.

When I am in an unawakened state, I harbor deep worry that Thomas and Lillian will not choose to move towards a relationship of harmony and loving kindness. It breaks my heart to feel the current energies of dislike they have for one another.

Empathy has within it the seed to change the world. The more of us that plant and cultivate this seed, the more the world will shift towards peace.

Blessings,
Camilla
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Amazing news! My 16 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” is published. Learn more and order here

Wonderfully exciting news! My 12 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

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