Fundraising for the 2019 Chromosome 18 Conference – Lillian

Sharing for Lillian Darnell (my daughter for those who don’t know) …. She is one determined being with this every year. She will continue to ask me for ideas every other day with a determination and steadfastness that rivals a future Olympian in training …

“Hey, everyone! For this year’s fundraising efforts for my family to attend the Chromosome 18 Conference in Colorado Springs, I decided to make customized poems. Here’s some information on the poems:

The poems will be nature themed, fairy themed, mermaid themed, or unicorn themed. Every poem created will be different and uniquely yours! You can get a decorative border around the poem, incorporating recycled materials; or simply the poem emailed to you.

Now, here’s some information on what the Chromosome 18 annual conference means to me:

The Chromosome 18 conference means a lot to me because I get to meet new friends and spend time with old friends. It also means a lot to me because I get to travel to a new city with my family.

The Chromosome 18 conference helps me get over my fears and my emotions. It helps me feel brave, courageous, and enjoyable. Here’s an example: In July 2017, when my family and I were inside the airport, I was fearful, nervous, tired, and afraid; yet, the view I got from the airplane was amazing and it was all worth it.

Here’s a poem as an example:

Butterflies dash and play
Within the golden sunbeams
Dancing in the afternoon sky.

Butterflies fly in the sky like a colorful moving rainbow
Glimmering in the sky.
The sky sparkling like water.

Butterflies dance freely along
the water.
Water sways as it’s greeting the butterflies.

©2019 Lillian Darnell

You can still purchase prints of my abstract artwork also.”

from me: Lillian has a condition called 18p- which means she is missing the short arm of chromosome #18. The ways in which this manifest for her are: difficulties with articulation, balance and depth perception issues, chronic pain, difficulties with handling strong emotions, and irrational fears and worries.

Her only friends are through the Chromosome 18 group. She always chooses one fear to conquer leading up to the conference. This year it is her fear of taking a shower (she’s always taken baths). She’s nearly conquered it already! The conference is like one long therapy session for the entire family as there is a track for parents/caregivers, a sibling track, and a self advocate track.

Feel free to share this with any you know who enjoy supporting artists and fundraisers.

(Photo of Lillian on one of our date days; and a message from Lillian, table centerpiece and a group photo … All from the 2018 conference in Baltimore)

Go here to learn more ….

Fundraising for the 2019 Chromosome 18 Family Conference – Poem Creativity

 

Macy in the Sky with Rainbows by Lillian Darnell

July 10 2018:

Somewhere in the vast blue sky between Baltimore and Vegas; Lillian showed me something she had typed in her phone.

After I read it, a lump formed in my throat as sweat pooled in my eyes … Once I was able to speak, I suggested she expand it and create a story. I could tell it meant so very much to her and that this came straight from her heart. May this touch your heart and shine of the love of friendship and the love of nature.

With permission, here’s what she wrote: “Sometimes I hope Macy will travel on an airplane one day in the future so Macy could see how beautiful the sky is in the air. Maybe she could be able to see a circular rainbow or better yet a spectacular sunset, sunrise, or both if that day comes (I hope it does … )”

Here’s the story; which she wrote right then and there during the flight:

Hey, everyone! I wrote this story on July 5th inspired by a daydream I had for a year. The character’s name is based on Macy Miller (a close 18p- friend of mine). I hope you enjoy!

Once long ago, there lived a young girl named Macy Helens who was afraid to fly on an airplane. One day though, her parents who were named Hannah and William announced that they were going on a family vacation but they needed to take an airplane to their destination.

Hannah had made a smart decision to use this vacation to help Macy get over her fears of flying. So Macy was scared but she knew she had to overcome her fears eventually. So Macy agreed to go. They left the next morning.

First, they went through TFA (The Fairy Association which is similar to TSA) and Macy wasn’t even scared but she was proud of herself. Macy handled the searching for a gate number, waiting, and the walking quite easily. The hardest thing was getting on the plane but she told herself not to look down.

It worked perfectly. Once they were about to take off, Macy was afraid of the steep incline that what she did was look out the window for familiar sights. Macy saw circular rainbows, a beautiful sunset, and a gorgeous sunrise as well. She was very impressed. Finally, their flight landed and Macy was very happy and proud.

Chromosome 18 Registry Family Conference 2017 – Naperville, Illinois

July 10 2017:

Picked up a load of Biggest Little Photographer books this morning! He gets to fly to Chicago tomorrow. No luggage for you Biggest Little Photographer. You are your own luggage! xoxoxo

Biggest Little Photographer Books to 2017 Conference 7.10.17

July 11 2017:

We made it! Early morning flight. We got to see the sun rise. Now just waiting for our room. Great flight. Great ride here.

Thank you Stacey Perez for having Lovey over for a vacation at The Perez Casa. And thank you times a million for picking up Rosey from the airport. It was great to be able to drive our own car this morning!

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July 11 2017:

Spinach salad with red and green peppers, red onions, mushrooms, and roasted potatoes …. with a honey mustard dressing. Thomas and Lillian had more traditional pub items. Yet, so happy and grateful this was on the menu for me!!

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July 12 2017:

They communicate nearly daily. One lives in Reno, Nevada and one lives in Kentucky. I got the countdown all day as to when she would arrive this afternoon in Naperville.

Finally!! They get to be together face to face!! I think Macy Miller and Lillian Darnell are kinda happy.

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July 13 2017:

He waits all year to be a crazy kid with his sibling friends. Here they are off to a sibling outing. This makes my eyes pool with sweat. Love ….

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Looks kind of messy in this picture, yet it was soooooo amazing!!!! Incredibly yummy bruschetta I had for dinner last night at a local place that donated 15% from the evening to The Chromosome 18 Registry. Thank you Bricks Wood Fired Pizza!! Thomas and Lillian loved their dinner too! xoxo

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July 14 2017:

Swimming with friends for Thomas. And I got to meet Kunali! He was laser focused on where his dad went. I adore his ears. So cute! Then there was sitting on the couch and chatting and being silly with friends.

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Making “music” after lunch. (Thanks Kerry Connelly for taking this one.)

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Wee little walk around the hotel yesterday with Lillian. Beautiful flowers and a cool accidental photo. Plus, a flowers view of the hotel. Yay!! Fresh air and bits of nature. xoxoxo …

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Favorite Chromosome 18 Conference comment so far: “I don’t think I can answer anymore questions Kati.” -Matt Miller (Debra Anne Kovacs) xoxo …. Love Ms. Kati!!

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July 15 2017:

“This is why we come to the Chromosome 18 Conference!” – Wendy Waugh

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Lillian and Chris having a great conversation!

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Lillian Darnell did an amazing job interviewing with Chris of Special Books by Special Kids!!!!! You go Lillian!!!

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Happy, happy, joy, joy …. xoxo …..

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Picture of 18p- group …. xoxoxoxo

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Farewell Dinner and Dance

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July 16 2017

One more with Mr. Chris last night and a farewell photo with Mary Borucki. Wonderful people! Blessed and grateful!! xoxo

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July 16 2017:

Wish we’d had more time to explore the Naperville Riverwalk. So incredibly beautiful. Only got one hour there before we had to make our way to the airport. The music from the carillon is indescribably amazing. Would love to have toured it! And that’s one wide tree! If I had known it was so peaceful and soothing, I may have been MIA from the conference. Oh my gosh!!

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This one called for its own post …. “What We Need” ….

This spoke to me deeply. Time disappeared, all else faded. It was only these words, nature, and me. Be still. And know. xoxoxo

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July 17 2017:

Approaching the Reno Tahoe airport last night in first picture. Somewhere over Utah or Nevada in the other pictures. Nature and love are incredibly beautiful and good for us. xoxo …

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July 17 2017:

Just picked up Lovey, the guinea pig, from The Perez Resort (ran by Stacey, Eric, and Mason Perez). They are so good to her and Team TLC.

They clipped her nails and fed her all kinds of yummy fruits and veggies. She graced them with many great guinea pig sounds for all their efforts!

They picked up Rosey, Team TLC’s car, at the airport last Tuesday so I was able to drive us to the airport at 4:00 am Tuesday morning. They filled up Rosey’s tank; which hasn’t been full in quite a while!! They delivered Rosey back to us at the arrival pick up area last night at Reno-Tahoe airport!!

Thank you Stacey, Eric, and Mason! Y’all are the best and we are so incredibly blessed and grateful for your kindness and love!!! xoxoxoxoxo

July 18 2017:

Most “WOW” conference moment … We traveled nearly 2,000 miles from Reno to Naperville and met a mom and daughter (with trisomy 18p) from Grass Valley, California … about an hour and a half from here. It was their 1st conference! Can’t wait to visit them in Grass Valley! Virginia was born in 1961 and was diagnosed in 2012. xoxo

Best follow up comment to a session at the Chromosome 18 conference:

“The people who created the formulas and rules were drunk.”

Comment courtesy of Thomas after he and I had a discussion about John McGing’s SSI/SSDI/Medicaid/Medicare session. It’s enough to drive one to drinking … Cheers! …. xoxo

July 19 2017:

Fifteen Biggest Little Photographer books travelled by backpack to Naperville with us. Only three came back.

Oceans and oceans of gratitude to everyone for their support, and to Thomas and Biggest Little Photographer for being the Way for Team TLC to eat while we were there!

YAY for food! YAY for inspiring creations! xoxo

Help Team TLC With Attending the 2017 Chromosome 18 Family Conference

C18 Trip July 2016 #17

We need your help! Last minute fund raising for Team TLC’s attendance at the 2017 Chromosome 18 Family Conference in Naperville, Illinois from July 12th – July 15th.

Fortunately, we have a sponsor who has loaned us money for our airfare, registration, and hotel stay. And we have a wee bit from Thomas and Lillian fundraising since last year’s conference.

We just need to make sure we have enough for incidentals while there … food, transportation to and from the airport, and the special events lined up for siblings and self advocates.

If you are moved to help, here’s a list of our creations and items for sale:

  1. Lillian’s debut book, Where Would You Fly and Other Magickal Stories, debuting by October 2017. Pre-order here … http://lilliandarnell.com/author/
  2. Thomas’ book, Biggest Little Photographer, published in October 2016. Order here …. http://BiggestLittlePhotographer.com
  3. Camilla’s book, D iz for Different – One Woman’s Journey to Acceptance, published in March 2012. Order here …. http://camilladowns.com/books/
  4. Skeleton key wind chime designed by Thomas and created by Camilla ($25 – includes shipping) … **SOLD** Picture here … https://www.facebook.com/photo.php?fbid=10155549637116584&set=a.52927246583.79053.681171583&type=3&theater
  5. Print or digital download of Lillian’s Egyptian Eye or Rainbow of Emotions abstract art …. View and order here … http://lilliandarnell.com/lillians-art/
  6. Hand made notebook by Lillian … Order here … http://lilliandarnell.com/lillians-art/
  7. Custom poem for you or a loved one (by Camilla) … email Camilla at Camilla Downs @ gmail . com ….
  8. Queen size solid wood sleigh bed frame … Make an offer … Picture here … https://www.facebook.com/photo.php?fbid=10155404014936584&set=pb.681171583.-2207520000.1499540619.&type=3&theater
  9. If you are a business owner and want to sponsor us, I’m happy to wear promotional items, get a temporary tattoo, write a blog post, etc. …. email Camilla at Camilla Downs @ gmail . com …
  10. Just want to donate …. Go here … https://www.paypal.me/camilladowns
  11. Prayers, blessings, and good juju!!

If you’re wondering why this is such a big deal for Team TLC and why it means so much for us to be there, go here and here.

With tremendous gratitude and blessings,
Thomas, Lillian, and Camilla
xoxoxo

C18 Trip July 2016 #77
(Team TLC with our friends from Australia!! xoxoxo)

Hand Made Custom Notebooks by Lillian Darnell

May 20 2017:

From Lillian …. (The conference is in Naperville, Illinois this year) …. xoxo

Hey, everyone! Every year around this time, I like to create something to fundraise and help my family attend the annual Chromosome 18 Family conference.

This year I am creating handmade notebooks which can be customized.

Here’s a sample. Let me know if you want one by commenting here or sending an email to my Mom at CamillaDowns @ gmail . com .

Lillian's Doodling Notebook May 2017

She’s already received THREE orders! YAY Lillian!

Why We Attend The Chromosome 18 Conference Every Summer

January 8 2017:

Top 10 Countdown Continues! The Number SIX 2016 CamillaDowns.com blog post with the most views: “2016 Chromosome 18 Conference – San Antonio” ……. xoxoxoxoxo …….

2016 Chromosome 18 Conference – San Antonio

from the article … “The anticipation of and the attendance at the conference encourage Lillian to set goals and accomplishing them. At last year’s conference she got in the elevator, went downstairs, and waited in the lobby for friends .. all without my assistance or presence.

She used the hand dryer and automatic toilet also. About a week ago she walked across the foot bridge alone, without holding onto my arm. Two days ago she climbed two stairs with holding onto my arm and plans to reach the top of the stairwell before we leave for the conference. All of these are huge accomplishments for her … “

A Tribute to Our Friend Heather England

August 12 2016:

I am so incredibly saddened and my heart aches. Heather is a beautiful soul we got the chance to know through our chromosome 18 family. All day yesterday your face was right in front of me dancing with me as we did at the farewell dinner just last month at the C18 Conference. Heather England, you and your family, have blessed me and all you encounter with how you shine and love. Ronda England: I send love, light, prayers and strength … My heart breaks for you … xoxoxo …

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Please send prayers, love, and strength to the England family.

From Heather’s family earlier this afternoon:

“Feeling very thankful and grateful for the tons of folks that stormed the gates of heaven for Heather England’s life over the past two days! I am saddened to tell you she has left her earthly dwelling, however, I rejoice in knowing that she has gone to heaven to party with Jesus! I will miss her infectious smile and her compassionate heart. Heather I will see you in eternity! Until then …………. Hold heaven down for me!”

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August 16, 2016:

Found some purple flowers to take a picture of for you this morning, Heather England … Beautiful shining you … You shined at the farewell dinner and dance. And you shared your shine with all you touched .. Just look at YOU!

Thank you Rick Guidotti for capturing this amazing picture. Ronda England … All my love, heart, prayers … everything to you and your family today as you celebrate Heather’s life this afternoon .. xoxo

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Thank you Mark Sogard for being there with the family in place of those of us all over the world who want to show our love and support! xoxo …#purpleforHeather 

More thoughts of Heather … Thomas made purple Heather flags to hang from his glasses … Team TLC Loves Heather England … xoxoxo …#purpleforHeather http://leaandsimmons.com/…/9…/Heather-England/obituary.html…

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One more for beautiful, shining Heather England … #purpleforHeather … Oceans of love, prayers, and strength to you and your family Ronda England…

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The 2016 Chromosome 18 Conference: Deja Vu and The Riverwalk

(This is part two of The 2016 C18 Conference Journey. Go here for part one.)

July 10 2016:

The one who says to me as we’re driving through the amazing rock formations after going through the Boulder Dam area … “I always have deja vu, like I’ve lived this life before. He said it all seems so familiar.” … and when we encountered some difficulties on the trip down … “When you get a rock in your shoe, just shake it out” ….. I deeply love this little human … Thomas Darnell …. xoxo

July 12 2016:

Took a much needed walk this morning. Feeling so out of place here. This was exactly what I needed. Felt like a massage … So relaxing, refreshing, and inspiring. I love nature. xoxo

 

 

 

Magic and Stairs and Cookies and Rainbows

June 12 2016:

I have been working on this post for two days now! Done! It’s a throwback to 2010 and 2011 with updated content. I came across an article the other day that moved me to the core and just knew in my heart I must write this.http://camilladowns.com/…/the-power-and-magic-of-connected…/

Now we can go on a little adventure and then back to create a special poem to accompany a very special painted rock for a beautiful soul way down in the bayou.

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June 15 2016:

She set a goal of going up 2 stairs, without holding onto me, before her physical therapy appointment today. She did it yesterday afternoon! By next Wednesday it will be 4 or 5 steps! Wahoo!!!

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We’re working on the book trailer for Thomas’ upcoming book … “Grand Adventures of the Biggest Little Photographer” … Here’s a fun picture I took of him taking a picture of the mini figure taking a picture.

The book will contain many of the photos he took during the 365 day photo project he decided to do on his own when he was 8 years old. It will also include an introduction of how it began, quotes, and a bit of the story along the way. Coming Fall 2016 – You can pre-order if this sounds like something that interest you or if you know a LEGO enthusiast!!  … xoxo

Thomas Taking Picture of Minifigure Taking a Photo 2014

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June 16 2016:

And just because. We made chocolate almond flour cookies last night at 8:30. Toasted to Team TLC and read our read-aloud-book!!! So YUM!!!

Chocolate Almond Flour Cookies June 16 2016

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Looks like a grand adventure awaits us next month! The Chromosome 18 conference is in San Antonio this year, July 10-13th and we are going to drive. We found out today that an organization that has helped us get there the past two years is not able to help this year. xoxo

Google Maps suggests three different routes. Has anyone out there driven any of these routes, know the road conditions, etc … Need to decide which is the best route. What about campgrounds on any of these routes? Know about any?

Every year Thomas and Lillian both want to contribute to getting us to the conference. They come up with their own ideas and offer their creations through each of their websites. Here are the different ways to support our trip if it feels right to you (and a link to a blog post with more information …http://camilladowns.com/…/2016-chromosome-18-conference-sa…/):

Route suggestions per above
Painted Rocks by Thomas
Leaf at Sunset by Thomas
Nature Adventure Set by Thomas
Mini-figure photo a day prints by Thomas
Pre-order “Grand Adventure of the Biggest Little Photographer” by Thomas
Random Act of Love Cards
Services by Thomas (errands and poop scooping – in Reno area) (email me regarding this one)
Egyptian Eye by Lillian
Rainbow of Emotions by Lillian
Custom Abstract Art by Lillian
Mystique Boutique
Walk With Me
“D iz for Different” book
Custom Poem by Camilla

Google Maps June 2016

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This. Just when this message was needed. I was drinking my water earlier today and this is what I saw.

Received some news today that is not what I expected and kinda leaves me feeling really tired. Yet, I know there is a different way to see this … And this was a reminder. Sharing for anyone else who needs it …. xoxo

Heart Bottom of Glass June 2016

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June 17 2016:

Lillian’s latest blog post and her latest abstract art creation, Rainbow of Emotions. Let her know if you’re interested in having an 8 X 10 print of it. This is just a picture of it. The scanned version will have crisp clarity. May you enjoy her story about Rainbows and Love! xoxo

“Hey, everyone! This story is about rainbows and love. I hope you enjoy!

Once there lived 2 rainbows who didn’t want to separate for the love of nature. Their names were Candy Rainbow and Princess Rainbow. One day, Candy Rainbow was accidentally separated from Princess. What they didn’t know was the Nature fairy had split them in half.

Candy desperately looked for Princess but there was no sign of her. Meanwhile, Princess was where Candy wasn’t. She was anxious to find him but the Nature fairy wouldn’t let her. Candy got up to ask the Nature Fairy. What the fairy said, “No, I haven’t seen her. I didn’t separate you.”

Candy thought the fairy was being suspicious. Princess started suspecting the fairy. After a year past, they accidentally ran into each other. When the fairy found out, she was furious.

The fairy decided to put Princess invisible so she couldn’t be seen when they bumped into each other. Candy tried to explain to the Nature fairy that rainbow magic was more powerful than fairy magic. Since the nature fairy wouldn’t listen, Candy decided to show her what he tried to explain.

So his plan was to use his magic and power to get Princess out of the invisible world. So when Princess saw he was stretching out to use his power, she decided to reach over and touch his stretched arc. Candy felt lighter somehow but he didn’t know how.

Suddenly the invisible spell broke. The fairy was shocked at what happened but the fairy had to vanish. “It was me who helped you, Candy”, said Princess softly. “Thank you, Princess!” and the rainbows’ love was returned.

Princess thought if people saw them, it would be easier to have 1 rainbow be invisible. Princess decided to go invisible but Candy was able to see her. Every once in awhile, Princess appeared behind Candy. That is why some people see double or triple rainbows.”

Lillian's New Abstract Art May 2016

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June 17 2016:

Setting family intentions, making a plan, creating a “happy songs” play list, listening now, deciding on new rituals, and discussing the importance of gratitude.

That’s what Team TLC did this morning. Next up, framing our intentions and rituals and hanging on our wall. We are family and It’s a wonderful world with Three Little Birds singing “Every little thing’s gonna be alright” …. Hakuna Matata xoxo

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This one’s headed to live in Houma, Louisiana!! Have fun down in da bayou!! Rock is hand painted rock with acrylic paint and sealed. Poem created by me and handwritten on recycled materials ready to hang.

Walk With Me

I walk this path with legs
that have walked many miles.
I walk this path with arms
free of heavy burdens from the past.
I walk this path with a mind
that supports and encourages the heart.
I walk this path with a heart
that is pure and ripe with love.
I walk this path with eyes
fresh with new perspectives.
I walk this path with ears
awakened to natures sounds.
I walk this path with a nose
that inhales the sweetness.
I walk this path with mouth and lips
parted to breathe the benevolent essence.
I walk this eternal path home
with all beings as one. ~Camilla Downs 2016