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.

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.

Poetry: The Long Weekend

On January 17 2019, Lillian Darnell left for another long weekend with The Romano Duo (grandparents) ….

I look forward to these days of respite.
She looks forward to them.
Yet, every time she leaves to spend days away,
My heart is surrounded by a tingling sadness.

It’s such an interesting feeling.
When tingling sadness dances with peaceful contentment.
They pair well.
Sharing wisdom and shedding Light.

I take the hand of tingling sadness and peaceful contentment.
We embrace and dance to the tune of an old and worn knowing.

And the small, barely there rain drops fall
to slowly make disappear her foot prints,
as she joyfully leaves me.

Loving this dance with life
Living this dance with life
What a Life!
Hey, come and get it
Keep it coming,
Get your dance card and let’s dance.
-©2019 Camilla Downs

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

Amazing news! My 17 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” is arriving 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.

Go here to see latest soul writings. xoxo

Poetry: May You Always Know

Camilla & Lillian Rancho July 2015

Finally finished Lillian’s hand made Christmas gift! xoxo

Dearest Lillian

May you always live with an open and light heart,
May you always live knowing you are unconditionally loved,
May you always live knowing and allowing peace, joy, and abundance.

May good fortune smile and shower upon you,
May joy stalk you and be hidden in every nook and cranny of your life,
May peace float always above you as a puffy cloud in a bright blue sky.

May the shadows ever be there to bring delight and laughter to your world,
May the suns rays ever bring a smile and tender joy to your life,
May you never lose your sense of wonder with all things that most have lost.

May you always hear the sweet sound of the magical bell.

May you always know, even after I am long done with this body,
that my love for you is eternal and never ending.

I love you,
Camilla 💖
Mother
xoxo
1.11.18

Lillian's Christmas Gift 2017 Finished #2

Lillian's Christmas Gift 2017 Finished #1 Lillian's Christmas Gift 2017 Finished #3

Lillian's Christmas Gift 2017 Finished #4

I think it was in 2012 when I began making each of them something handmade that incorporated some type of writing from me. It brings me such joy and I feel even if they don’t fully appreciate it now, they will cherish it some day. And, if they don’t, that’s okay too. For once I make it and give it as a gift, I release it.

I like to use recycled items when creating hand made gifts. This is a piece of cardboard. The top and bottom accent are from an old wall calendar which features flowers. The star, bird, and sun are from another old calendar. The flowers are from a really old Highlights magazine. The hand drawn decorations are with glitter glue. And, last, I’ll attach a piece of hemp shoe string to use for hanging the piece. A friend donated boxes of this hemp string to us many years ago. Fun!

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

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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Poetry: The Dance of Lillian – Happy 16th Birthday

Team TLC Sunset Walk Damonte Ranch Trail 6.18.17 #15

I’m a month late posting this, yet I promised Lillian that I would write a post dedicated to her …. xoxo

The Dance of Lillian

She came into this world
with her own agenda.
She came missing the short
arm of chromosome number 18.

Never mind what they
thought about how
they would parent her.

They would quickly
learn no parenting
manual existed for
the lessons she was
to bring with her
through this incarnation.

She delivered the
gift of shattered
expectations early
in her Earth life
as Lillian.

She had chosen
as a mom someone
who had many uncomfortable
lessons to learn.

Patience was to
be another of the
lessons she brought
with the tiny little
body she inhabited.

She was not done yet.
The next gift delivered
flowed into their
lives as a pure
cold stream runs
through the land.

That message.
Acceptance.

Acceptance of what life
had delivered and would
deliver.

This little bundle
that grew into a bright
shining light had
many lessons bundled within.

The next was to be
release of judgments.
Oh. That one stung
worse than an unwanted
bee sting on a warm
sunny day. A sting
that lingered for
years, resurfacing
at just the right moment.

This little bundle
who could be anything
but a bundle of joy.
A bundle of anger,
anxiety, violence, and
all kinds of negativity.

With this bundle
came the lesson of
living in the present
moments of life.
Being mindful and
learning the art
of mindfulness.

Responding to this one
from the present moments
of life instead of hurts
from the past. Oh. This
was one of the hardest
lessons yet.

This had nothing to do
with this little bundle,
now a blossoming teen.
As she may have come
into this world in all
her nakedness.

Yet, she contained in
the fibers of her very
being, a Divinely pure
mirror that served to reflect
to the one called Mom
the lesson that it
was she who needed
to go within, to
confront her past,
to feel what she had
not wanted to feel,
And release it.

This would be the Mom’s
lesson of learning how to
live in the present moments
of life and to embrace the
art of mindfulness.

Four pounds and five
ounces of life changing,
life altering, life correcting
joy arrived on the evening
of September 14 2001.

Gratitude does not
even begin to describe
what the Mom feels about
the tiny bundle and she
deciding to have these
roles in this life.

The blossoming teen
was the catalyst
to teaching the mom that
she had it all wrong.
She and all children
are our awakeners.
They are not to
be pushed to the side,
put in the corner,
talked down to,
treated harshly,
abused, controlled,
barked at with commands
and “because I said so”
ridiculousness.

They are to be
respected and
treated as equals.
They may inhabit tiny
little bodies when they
first arrive.

Yet, the souls within
these tiny precious bodies
have much to teach us.
She came in missing
the short arm of her
chromosome number 18.

The lesson that encompasses
all of the other lessons
she brought forth.

Different.

She taught the mom
that she was going to be
the one who lives life
differently.

Mom learned how to live
life from the heart,
trusting the whisperings
of the heart.

She, who now enters
her sixteenth orbit
around the sun in this
Lillian body.

Happy, Happy Birthday
YOU beautiful being.
Thank you for blessing me
and being my awakener.

I Love You,
Camilla
Your Earth Mom

*******************************************

In addition to this, I thought it would be fun to link to her birthday posts over on the Team TLC blog and past birthday posts!

Happy 16th Birthday to Lillian Plus Camilla and Lillian September 2017 Date Day

She Spread Her Wings …. And Flew – Happy 15th Birthday Lillian

Happy 14th Birthday Lillian

Happy Birthday Lillian … Camilla

Blessings,

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

Amazing news! My 16 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” is arriving November 2017. Learn more and order here

Wonderfully exciting news! My 11 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

Latest Articles:
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