Throwback Post: The Island Princess and the Prince by Lillian Darnell

**THROWBACK POST**

August 29 2013:

Found these two angels sitting next to the computer as I was turning the lights out for bed. Asked Lillian if she put them there and she told me yes and that they were giving her ideas! Turns out they indeed were …. (I think I may have some angel bears sitting next to my computer tomorrow!)

The Island Princess and the Prince
Based on stuffed bears
By Lillian

Long ago, there was a queen named Lila and had been wishing for a baby for 4 years now and she got her wish. She was so happy that she named the baby “Princess Lila 2”. But she had lost her daughter and she was very sad…

10 years later….

Lila had thought her name was Lil and she was surprised to see that she could talk to animals.Then one day a stranger named Frank who is actually King of where she used to live. He wanted her to come but her animal friends wanted her to stay. Then she remembered her name was Lila for short because her real name was Liliana. Then she met her mother then after they had reunited and then Frank and Lila got married and lived happily ever after.

The 2021 Chromosome 18 Closer Than Ever Family Conference

July 11 2021

The yearly conference has kicked off! Sad that we’re not in person again this year. Fingers crossed for next year! Thank you to those who have worked hard organizing this event.

July 12 2021

2021 Chromosome 18 Conference today and tomorrow. You would think with Lillian being 19, the conference material would not be useful for us any longer. Nope. I’m getting very useful information, and asking lots of questions. Incredibly helpful. Thank you C18 Registry & Research Society.

July 13 2021

We had such a wonderful session this morning for parents/caregivers of self-advocates with 18p-. We missed you Katharine Newman .. So sorry you were having technical difficulties. This is such a beautiful group of humans. So blessed to be a part of it.

During our session, the parent presentation to classrooms came up. So I thought it a good time to repost this for anyone who is not attending conference, or for friends who may be dealing with something other than a chromosome 18 difference.

Here’s one of the last presentations I gave on Lillian’s behalf –

(September 2014) – Lillian’s birthday and the dawn of a new school year are upon us. This was the sixth annual “Lillian” presentation to her classmates. It began in the first grade because her classmates kept asking me “why” questions about Lillian. I figured why have them wondering and drawing erroneous conclusions and choosing to judge her when I can try and help them understand.

The presentation went GREAT! I got lots of questions and one sweet young man bought a copy of my book, D iz for Different, for his aunt. He has a cousin with 22q-. So sweet!

I like to share my presentation publicly because so many other parents are curious about this and some want to take the plunge and do their own presentation. Please use it as you need. I only ask that you let people know where you got the idea or information.

These are my raw notes for the presentation. I add to or skip information as I feel needed.

Lillian and Being Different

“If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured or far away.” – Henry David Thoreau

(Slide 1) Chocolate Candy Recipe ~ Each chocolate has a recipe – all use cocoa, and dark or milk chocolate
What ingredients make chocolates so different?

Fruit – Cherries, Coconut
Nuts – Almonds, Cashews, Peanut, Hazlenuts
Flavorings – Vanilla, Orange, Strawberry

We are like chocolates – we each have our own special recipe with special ingredients that make us DIFFERENT, UNIQUE, BEAUTIFUL AND AMAZING.

Chocolate recipes are usually in a book or written on paper or even in someones head. Our recipes for our bodies are in our genes.

Genes are our recipe for our bodies and they decide:

(Show book … “You’re Full of Genes” by Claudia Zylberberg Ph.D.)
Brown or Blue Eyes
Short or Tall
Straight or Curly Hair
Need Glasses or Not
Have Freckles or Dimples
Have small feet or big feet

Genes decide EVERYTHING about you and your body and how the parts should work. If some genes are missing or duplicated this decides whether something with our body doesn’t work.

Another way to explain is that genes are all of the instructions the human body needs to function. All of our bodies genes are organized into structures called chromosomes.

(Slide 2) Let’s look at this like a Chocolate Candy Cookbook. If the recipes are genes, then each chapter (Chocolate with Nuts Chapter, Chocolate with Fruit Chapter) is like a chromosome. The chapters, or chromosomes, make up the book – in our case, the book of life.

(Slide 3) Chromosome, DNA, Gene Slide

(Slide 4) There are 22 numbered pairs of chromosomes, plus two sex chromosomes (male or female). Each chromosome is numbered and each chromosome has a waistband. The waistband separates the short arm (p) and long arm (q) of the chromosome. (slide 4)

(slide 5) Lillian has a very unique recipe (genes) unlike any of you. A section of her recipe is missing – deleted (called a chromosome abnormality). A piece of her #18 chromosome is missing – the short arm of her #18 is deleted, so it’s called 18p-.

What happens if you leave out an ingredient for a recipe?

(slide 6) Lillian has to work harder at doing many of the things that are easy for you. She’s had to do this since being a baby. Things like turning over, holding her head up, crawling, walking, making sounds, cutting with scissors, eating, writing, talking.

Lillian’s mouth has to work so much harder to chew and swallow and speak.

Her hands have to work harder to do things like writing, cutting, make crafts, opening packages.
Her body has to work harder at walking, running, and staying balanced.

She’s very nervous, startled and scared about loud sudden noises (thunderstorms, fire alarms for drills, helicopters)

Lillian uses an iPod Touch with an application installed that allows her to type in what she needs or wants to say and press a speak button. Talk about Proloquo2Go. She can also simply type what she wants to say in the notes section or texting section of the iPod. She doesn’t really use P2G as much as she did when she was younger.

Lillian has all the words and things she needs and wants to say in her mind. She has problems articulating it (saying it) clearly.

She is just the same as the rest of you in many ways. She likes to read (mysteries, non-fiction books and friendship books), loves listening to a variety of music, she likes french fries, hot dogs, meatloaf, donuts, and she loves going for walks, taking pictures, and telling and listening to jokes.

Lillian loves the stars, moon and sun (astronomy) and loves dancing and just being silly. She’s passionate about the weather. She tracks the weather every day!

I want to share some ideas and thoughts with you on how you can be awesome, supportive, and helpful friends and classmates to one another and to Lillian! I want to make sure you understand I’m not solely talking about Lillian with how to be supportive. This is for all of you.

Encourage one another if you see any of your classmates or Lillian having a hard time.
Lend a helping hand if you see one of your classmates struggling.

Be patient with Lillian if you don’t understand what she has just said ~ encourage her to use her iTouch to tell you what she’s trying to say or write it down or verbally spell the word for you.

Be patient with one another too.

Take that first step and ask Lillian what she did over the weekend or about her likes, dislikes ~ questions you would ask your fellow classmates and friends. You will have to wait longer for an answer; but the good feelings you get from showing kindness and friendship to someone who is a little different will outweigh the amount of time it takes Lillian to respond.

This goes for any of your classmates. If you see a classmate all alone, take that first step. Go over and start a conversation with him or her. Also remember to respect if that person chooses to be left alone. Some times we just need alone time.

(Slide 7 & 😎 Team TLC and Different iz Good

Now, let’s switch gears a bit and talk about being different. It’s okay to be different. It’s okay to be YOU. We all, at some point, feel like we don’t fit in and feel like we are different. That’s because we are. We are uniquely us, we are just as we were meant to be.

Most times we chase after trying to fit in. Fit in with the cool kids, the loud kids, the fun kids, the popular kids, the crazy kids. You may not understand this now, but chasing after trying to fit in comes back to haunt us later in life. It becomes a habit and then we chase after friendships, relationships, careers. The easiest and most fun route to take in life is to just be YOU and be grateful for whatever it is that makes you YOU!

Before we can accept and be kind to others and to those with differences, we must first … Follow the link to read the full presentation and letter to the parents of classmates …

Latest News: Sixth Annual Lillian Presentation

2021 Chromosome 18 Conference – Thank you to the siblings who participated in the Sibling Panel. Beautiful, and honest, as always. I took this picture before everyone was connected. 💜💜💜 GREAT job Thomas!! xoxo

Whew! All done with the 2021 Chromosome 18 Conference, ending with the always fun Starfish Dance. I’m pooped. That was two full days! ❤️❤️❤️ Love you C18 family. ❤️❤️❤️

Stella’s Beloved Garden by Lillian Darnell

April 8 2021

New story from Lillian (plus a poem!!)

Once there was a girl named Novella who was often called by her nickname Stella. Stella often loved the garden in the mansion where she would do everything and so all was well or at least so she thought.

Until one day, there was a huge fire that blew across the land. Stella was very sad to leave her beloved garden behind but she knew that her garden would always be in her heart.
So Stella and her family left to ….

Stella’s Beloved Garden

New Story from Lillian Darnell – Once in a Faraway Land

February 9 2021

A beautiful new story from Lillian Darnell … xoxo

Once in a faraway land lived two girls who were best friends. They did everything together including swimming and reading together. Their names were Anna and Hazel. They knew they would be best friends for life but little did Anna and Hazel know …

Anna and Hazel’s Love Story

Zoom Dancing With a Secret Service Agent and a Rose Fairy Princess

October 31 2020

Thank you Michelle Dvorak for hosting the The Chromosome 18 Registry & Research Society Halloween dance party!! What fun!! Everyone looked amazing and fun in their costumes!! 🎃👻🎃👻🎃👻🎃

October 31 2020

First time over to The Romano Duo’s since December. A whole pot of vegan chili just for me … with a virgin Bloody Mary!! 🧡🖤🎃👻

We had a fun time getting to visit The Romano Duo at their place. All three of us haven’t been since Last December.

We ate dinner outside and then I took Thomas and Lillian around the neighborhood for trick or treating. It was great to see how creative people were with safely handing out candy. Thomas was a secret service agent (who forgot to tuck in his shirt until after photos … Oops!). Lillian was once again The Rose Fairy Princess. 👻🎃💀

Thomas and Lillian also got a surprise visit from their dad who they’ve not seen since 2014. He phoned as we were driving to The Romano Duo’s place and said he’d be driving through town in about an hour. He visited for about 20 minutes before continuing on. 🤷🏼‍♀️

Home now. Time for Thomas and I to watch Arsenic & Old Lace. ☠️☠️☠️

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

**THROWBACK POST**

November 3 2015:

The article I contributed to Interaction, which is a multidisciplinary journal for the Australian Institute On Intellectual Disability, has just been published. Here’s a brief description of what and why I was asked to contribute: “looking at creativity in how we work and interact with people with intellectual disability. The other theme I am interested in exploring is empathy and how this “works” within our relationship building within intellectual disability”

Excerpt from the article: “One blood test, one phone call, one moment in time, drastically changed the direction of my life forever. I know more about genetics, chromosomes, DNA, motor skills, verbal skills, and now emotional and behavioural issues than I ever thought I would need or want to know. ……. I thought I had life pretty much planned at that point and for a while this brief phone call seemed to have caused my life to break apart like a melting iceberg with pieces scattering here and there. Looking back now, all that was brought into my life, all that occurred, all that began, and all that ended were meant to happen for my own growth and enlightenment. An enlightenment I feel spreads far beyond myself and my family as I believe we are all connected.”

My article is on page 30. However, the entire journal is excellent! You’ll need a chunk of time to read it as it’s short story length at around 4,000 words. I encourage anyone who is moved to subscribe to this wonderful publication! Enjoy and please feel free to share and/or forward to anyone you think would benefit! With oceans of love … xoxo

Click here to read the digital version of the journal. The access code is: K9HqOa

My article is on page 30. However, the entire journal is excellent! You’ll need a chunk of time to read it as it’s short story length at around 4,000 words.

I encourage anyone who is moved to subscribe to this wonderful publication to do so! Enjoy and please feel free to share and/or forward to anyone you think would benefit! With oceans of love … xoxo

PDF version: Interaction Volume 28 Issue 4

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

March 6 2020

Thank you to Michelle of Curled Up With a Good Book for the lovely review of Lillian’s book … We are deeply grateful!! xoxo

“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 ….”

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

For Emarie Peters – We Are Family

February 29 2020

For Emarie … Wearing purple, red, and blue … blowing bubbles ….We love our Chromosome 18 family, we love you Emarie, we love you Peters family. I was lucky enough to catch a heart shaped bubble!! Perfect!! Strong winds made it a short celebration for you. Yet, that is perfect. As you were one strong human. Much power was packed within your tiny body. 💜💜💜💙💙💙 #WeAreFamily 💙💙💙💜💜💜

Photos of Emarie and her mom and dad from the Different iz Good archives …

 

Lillian Darnell You Did It – Keep Believing

September 8 2019:

I am way, way late in creating this for Lillian. I had wanted to write something special, paired with a photo collage; and finally took the time to focus on it. She has seen and read this, likes it, and approves of sharing! 💜🎉

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