Tag Archives: 18p-

Throwback Post: Being a Sibling to One With Special Needs

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(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

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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

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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

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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

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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.

Keep Believing – Adventure is Always There

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Dear Lillian,

I am proud of you.
I love you.

You did it
You continue to do it.

You shine that bright sparkling smile
Upon all who’s eyes you meet.

You did it!
From high school
You have Graduated!

You, we, did it different.
And, that is okay.
In fact, it is perfect for we.

Not everyone is meant
to do life as it has always been done.

This is what creates
the rich and vibrant soup
of human life.

There are those who follow the path
of doing it different.
There are those who follow the path
of the way it’s always been done.
No path is better than the other.
Whether the same path as another is
followed or a different path is followed.

The paths are equal.
Yet the benefit to humanity
is vast in the variety
and depth of ideas,
the dynamic expressions,
that bloom when each of us
travels the path of our hearts.

You continue each day
in the face of chronic pain,
communication challenges,
depth perception and balance difficulties,
fine and gross motor awkwardness,
emotional struggles,
indecision worries,

You continue each day
with that bright sparkling smile.

You continue each day
Knowing what you want in this life
Knowing what you want to achieve
Knowing how you want to live

You continue each day
meeting all that life has put forth for you.

I honor you.
I honor and support the fierce
warrior within you who
knows her heart’s desire.

I honor you.
I am proud of you.
I love you.

YOU DID IT!

Happy Graduation to YOU!!

Love,
Camilla
Mom

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 Magic She Carries in Her Heart – Book Review of Where Would You Fly

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Lillian and I are deeply grateful for this wonderful, heartfelt and thorough review … So lovely that my eyes pooled with liquid gratitude when I read it last night. Thank you Katie!! 💜💜💜


(Lillian at the Barnes & Noble book signing in November 2018)

Excerpt from the review ….

” …. I also loved the beautiful drawing and photos of Lillian and her family. This really made the book feel even more special. I also think reading about how special Lillian is can only make you feel blessed to be able to see the magic she carries in her mind and heart …. ”

Please visit the below link to read more and if you feel moved, we would be incredibly grateful for you to “like” the post and/or comment.

My Review of Where Would You Fly?: and Other Magical Stories Author Lillian Darnell

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” 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.

Go here to see latest soul writings. xoxo

 

Live Your Life as a Fairy Tale – Guest Post by Lillian Darnell

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On April 1, 2019, Lillian and I were a guest on the lovely Katrina Marie Hart’s blog to share a bit about Lillian and her debut book, “Where Would You Fly and Other Magical Stories”. If it feels right, we would be grateful for you to visit Katrina’s site to read the article in it’s entirety, and like or comment with your thoughts.

Here’s a wee bit from the article:

” …… My inspirations for writing are nature, coloring, drawing, reading, something I catch myself saying, food, and holidays. Most times my writing flows through me like a river.

Some of my favorite foods are French Fries, cheese (dairy and vegan – dairy bothers my stomach), dark chocolate, snickerdoodle cookies, chocolate cake, gluten free powdered donuts, and strawberries. I really enjoy volunteering at our local library one day a week and my family and I …. ”

Visit the below link to read further …

Live Your Life as a Fairy Tale by Author Lillian Darnell.

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” 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.

Go here to see latest soul writings. xoxo

Latest News: Help Spread the Word for Lillian Darnell’s Fundraiser

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Want to help spread the word for my special needs daughter, Lillian? She is fundraising to help pay for our attendance at the annual Chromosome 18 conference this July in Colorado Springs.

Who wouldn’t love a custom poem created just for them? That’s exactly what Lillian is offering for her fundraising efforts. Lillian is a natural poet and loves writing poetry.

For anyone new here, Lillian Darnell is my 17 year old special needs daughter. Her condition is called 18p- as she is missing the short arm of Chromosome #18. We attend a yearly conference every summer specific to her condition. She is adamant every year that she help raise money for us to attend as it’s darn expensive for a family of 3.


(Group Photo from the 2018 Conference in Baltimore)

The poems will be nature themed, fairy themed, mermaid themed, or unicorn themed. Every poem created will be different and uniquely yours!

Please feel free to share this post with others who appreciate poetry and love supporting artists and fundraisers!

Sample poem above … Oceans of gratitude and LOVE! Visit the link below to learn more about this from Lillian …

Fundraising for the 2019 Chromosome 18 Family Conference – Poem Creativity

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” 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.

Go here to see latest soul writings. xoxo

 

Poetry: The Long Weekend

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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