A Brave Girl

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.

Rainbow around the sun

Annual Chromosome 18 Conference 2018 Part 6

Hey, everyone! I just got back from a trip to Baltimore for the annual Chromosome 18 conference. This blog post is a summary of what I did at the Chromosome 18p- conference this year. I hope you enjoy reading this blog post. In case you’re wondering, the links are Thomas’, Camilla’s, and Chromosome 18’s website.

Here are some similar blog posts: https://lilliandarnell.com/2018/06/15/my-adventure-to-surprise-part-1/ and https://lilliandarnell.com/2017/09/13/annual-chromosome-18p-conference-2017/. Anyway, I hope you enjoy!

July 4th (known as 4th of July): 

I woke up at 9:00 am. Macy was hanging around on the 9th floor and when Camilla and Thomas were out of the room, I let Macy in. Anyway, Macy left at 9:30 am to go down to the 5th floor and again I took my time getting ready to go down to the 5th floor.

I went down at 11:00 am so I could hang out down there. At 11:30 am, the self-advocates went to lunch (I knew there was live music so I didn’t go). They got back at 1:30 pm.

So I went up and down until it was time for group pictures. It was pretty fun to do. Anyway, after the photos were taken I went up to my hotel room to get ready for the dinner and dance.

At 5:25 pm, I arrived at Macy’s door and she let me in. We talked in the hotel room for a little bit. At 5:48 pm though, we walked around the halls until 6:10 pm which is when we agreed to go down. At 6:00 pm, we found Katie and then we found Camilla.

Shortly Katie showed us the table my friends were sitting at. We both sat down and waited for our food to come. Once my food came, I ate most of it. Anyway, the music started when I was eating my chicken.

I went out to the dance floor the moment the song Let It Go came on. We sang along to it. Eventually, Macy joined the dance floor and we danced together. Around 9:15 pm, we went into the firework viewing room to watch a few fireworks.

At 9:30 pm, the real fireworks started. It lasted until 9:50 pm. Macy had to go to the public restroom afterward but there was a long line. So we made the decision to go up to Macy’s room so she could go to the restroom.

At 10:13 pm, we ran all the way to the elevators. We made it to the 5th floor at 11:10 pm when the last 2 songs were played. Here are some of the songs I danced to are  Y.M.C.A, Let It Go, and We Are Family. Anyway, after the last song ended we hung around talking and saying see you again soon before Macy and her family left.

We left shortly after that. I went up to the hotel room and got ready for bed. I went to sleep at 1:00 am.

Me waiting for dinner.

Macy and her family with Camilla and me

Macy and me with Macy’s father.

Me with Rebecca

Fireworks

The whole 18p- group.

See part 7 here

 

Annual Chromosome 18 Conference 2018 Part 5

Hey, everyone! I just got back from a trip to Baltimore for the annual Chromosome 18 conference. This blog post is a summary of what I did at the Chromosome 18p- conference this year. I hope you enjoy reading this blog post. In case you’re wondering, the links are Thomas’, Camilla’s, and Chromosome 18’s website.

Here are some similar blog posts: https://lilliandarnell.com/2018/06/15/my-adventure-to-surprise-part-1/ and https://lilliandarnell.com/2017/09/13/annual-chromosome-18p-conference-2017/. Anyway, I hope you enjoy!

July 3rd: 

I woke up at 8:25 am. Again Camilla called room service so she could order breakfast shortly after I woke up. At 9:23 am, Macy was outside my hotel room. Anyway, I let her in and I had already started getting ready to go down to the 5th floor.

So I finished getting ready quickly. Instead of going to the 5th floor though, we explored the hotel floors again. Eventually, Macy and I went into her hotel room and we hung out in her room there.

We sang a couple of songs from Youtube (luckily my throat wasn’t dry) before deciding to go down to the 5th floor. At 11:30 am, I went with Macy and Katie to listen to the pre-self-advocate panel in a certain room.

The pre-self-advocate-advocate panel was finished at 11:45 am for lunch. Macy’s parents weren’t out of a session yet so she asked if she could sit with me for lunch. I was perfectly fine with that.

I ate most of my lunch while waiting for Macy to get her water. I ate my dessert while waiting for Macy to get her dessert. After we both finished eating lunch, we went back up to Macy’s hotel room for a few minutes before heading back down to the 5th floor.

Macy and I hung out with Katie, Kaylyn Earl (an 18p- friend), Rebecca, Irene Mckay (an 18p- friend I’ve known), and Remy before my friends had to go to the certain room. Also, Macy and I got our photo taken as well. At 2:15 pm, Macy came out to take a break and I hung out before Macy and Rebecca had to go back to the certain room.

I went up to the room again until 3:00 pm when I went back down to the 5th floor. At 3:10 pm, Macy came out and we hung around the 5th-floor talking and giggling (or laughing, whichever you want to call it).

At 5:00 pm, I went down to the lobby with Macy to see Macy off for Self Advocate Dinner (didn’t go since it wasn’t my type of food). At 7:28 pm, Macy messaged me through Facebook Messenger saying she was on the 5th floor.

So I headed back down to the 5th floor right away. After that, we went up to my hotel room to hang out and talk until 9:50 pm. I decided to go down with her to right outside her hotel room and then I went up alone thinking and daydreaming (at night while awake).

Then I got ready for bed and went to sleep late that night wondering what would happen tomorrow. I was excited that the next day was the 4th of July. I went to sleep happy but tired.

Me and My friends

See part 6 here

Annual Chromosome 18 Conference 2018 Part 4

Hey, everyone! I just got back from a trip to Baltimore for the annual Chromosome 18 conference. This blog post is a summary of what I did at the Chromosome 18p- conference this year. I hope you enjoy reading this blog post. In case you’re wondering, the links are Thomas’, Camilla’s, and Chromosome 18’s website.

Here are some similar blog posts: https://lilliandarnell.com/2018/06/15/my-adventure-to-surprise-part-1/ and https://lilliandarnell.com/2017/09/13/annual-chromosome-18p-conference-2017/. Anyway, I hope you enjoy!

July 2nd: 

I woke up at 8:35 am. In just over a minute, Macy came up with Camilla. So I finished eating breakfast, put on clothes, and put the stuff back in my bag. The final thing I did was put on the name tag.

Macy asked if I wanted to explore the hallways of almost every floor of the hotel. Unfortunately, we ran out of time because Macy needed to be in a certain room at 11:00 am.

So we headed back to the 5th floor so Macy could go to the public restrooms around 10:50 am. Once Macy was in the certain room, I sat down for a minute before heading back up to the room. I came right back down at 11:10 am and we continued to explore the hallways where we left off.

At 11:30 am, we went back to the 5th floor. Once Macy was back in that certain room, I sat for about 5 minutes before going back up again. It wasn’t until 11:50 am that I went back down again.

At 11:30 am, I got stuck in line for lunch but managed to get out of line once Camilla got there. I wanted to sit with Macy but I couldn’t find her so I got out of the sunny area so I could not overheat. During that time, I Facebook Messaged Macy to see if she had finished eating.

Apparently, she was just finishing eating her cookie. So I waited and by 1:00 pm Macy found me with Camilla. So we decided to go up to both Macy’s hotel room and my hotel room.

Eventually, we went back to the 5th floor again. At 1:30 pm, Macy went back to the certain room. So I went up to the room again, I kept coming down though. At 3:00 pm, Macy snuck out of the certain room because it was too loud so we continued exploring the hotel floors.

At 3:30 pm, Macy went back to a certain room and I stayed down there until Macy came out at 3:45 pm and explored a floor until 4:15 pm when we went down to the lobby.

I had enough time to get my sunglasses and go back down to the lobby. So then I waited with other friends beside Macy. At 5:00 pm, we walked over to the Cheesecake Factory as a group.

Once the leader of this group announced we should be split into 9 groups. Macy and I offered to be in the nicest group.  The only thing was all of us didn’t want to wait. So we went to Build-A-Bear Workshop (don’t really care for the place) to wait. We walked back at 6; 00 pm and sat in 6 booths.

So we ordered dinner and I ordered apple juice, water, and french fries with some help from my friends. Some of my friends ordered dessert but I didn’t since I was full. Anyway, one of my friends helped with the math.

Once we got back, we all went up to our rooms so we could put our leftovers away. So once I went up to the room, I texted Camilla to see where she was. She said she was at the pool with Thomas.

So I went down to the pool to talk to Camilla. Anyway, I checked with Macy to see if she would go swimming. She was thinking about going swimming. She said she was getting her swimsuit on so I went up to the room to get mine on.

I came straight back down to go to the pool. I got in but it was too cold for me and for Macy it was too loud. I also tried the jacuzzi but the jacuzzi was too hot. So Macy went to bed and I went down to the lobby to see if there was any action happening down there.

I also stopped by the 5th floor to see if anyone was down there but there wasn’t so I went back up. I took a bath and got ready for bed. I went to sleep at 1:00 am exactly.

Cheesecake Factory. Borrowed from Google Images

See part 5 here

Annual Chromosome 18 Conference Part 3

Hey, everyone! I just got back from a trip to Baltimore for the annual Chromosome 18 conference. This blog post is a summary of what I did at the Chromosome 18p- conference this year. I hope you enjoy reading this blog post. In case you’re wondering, the links are Thomas’, Camilla’s, and Chromosome 18’s website.

Here are some similar blog posts: https://lilliandarnell.com/2018/06/15/my-adventure-to-surprise-part-1/ and https://lilliandarnell.com/2017/09/13/annual-chromosome-18p-conference-2017/. Anyway, I hope you enjoy!

July 1st: 

I woke up at 8:30 am but again I took my time getting up and get ready to go down to the lobby. Camilla was in the room getting ready to call room service to order breakfast when I woke up.

It wasn’t until 9:00 am that I went down to the lobby. I went up and down a lot in the elevator.

At 9:50 am, I saw Rebecca walk in. My grandmother Patty started doing a Facebook Video Chat with me so that Rebecca met Patty virtually since my grandparents are considering going to the conference next year.

Shortly after that, I went up to go to the restroom. I went up at 12:15 pm to grab a fruit bar to hold my stomach in. Anyway, I grabbed a sip of water and made it back down at 12:30 pm. At 12:30 pm, I was chatting with Macy through Facebook Messenger.

At 1:00 pm, Thomas and Camilla came back from outside bringing french fries from Dick’s (a restaurant) with them. That was my lunch. At 1:30 pm, I went back up. At 2:30 pm, I went up to the 5th floor to get my name tag and I hung out there. Before I went to get my name tag, I ran into Katie.

I was actually up in the room fixing my bag when I got a Facebook message on Facebook Messenger from Macy saying that they were at the hotel. So I finished doing what I was doing and let Macy know that I was heading down.

I ran as fast as my legs could take me to the elevators. Unfortunately, the elevator had a couple of people getting on slowing it down a bit but luckily they were all getting off at the 5th floor (they were part of the conference too).

Once I got down to the lobby, I calmly walked over to the spot I sat in that morning and let Macy know I was there. She turned around and saw me. She walked over and talked to me. Shortly after that, Macy went to the elevator area with her family.

The elevator was slow coming down so I was able to sneak into the elevator with them. It was a little squished in there but we thought that was funny (I normally wouldn’t like that).

After I went up to the room to rest, I headed back down to the 5th floor knowing that Macy would be down there soon. She Facebook Messaged me asking where I was. Anyway, I got down there and saw Macy standing at the entrance of the registry’s chosen room to get name tags.

I stood next to her while Macy waited for her parents. I was able to choose 2 spots where I could watch her move along. Eventually, she came over to talk to me again. I showed her where the public restrooms were. I decided to come along to see what the bathroom was like.

Anyway, I patiently waited for Macy to be done. After Macy and her family decided to go up the elevator and once again I was able to get on the same elevator as them. So I started to eat some leftover french fries for dinner when Macy Facebook Messaged me.

Macy was asking if our family wanted to go out to eat with their family. I wasn’t sure so I asked Macy what restaurant they were going to. Macy said Blaze Pizza in Facebook Messenger.

I looked it up to see how far away it was from the hotel. I figured it would be okay to go I asked where we needed to meet up at through Facebook Messenger. So, we got ready and went down to the lobby to meet up with them.

So we walked to the restaurant together. We ordered first while Macy and her family ordered last. Since there was a long booth, I decided to sit there and there was enough space for us to sit together.

Anyway, we left at 7;00 pm with Macy. We went up together to go to our hotel rooms. Once I put away my sunglasses, I went down to the social and met up with Macy there. After some time, Macy and I got bored so we went up the elevators to show each other where our rooms were.

Shortly after heading back down with Macy, we chatted with new friends and old friends until 10:30 pm when we were both so exhausted that we all went up to our hotel rooms for the night. Again I tried to go to sleep early but I winded up going to sleep at 1:00 am again. That night I went to sleep feeling blessed, relaxed, and relieved from stress and pain.

Macy and me.   Borrowed from Camilla

See part 4 here

Annual Chromosome 18 Conference Part 2

Hey, everyone! I just got back from a trip to Baltimore for the annual Chromosome 18 conference. This blog post is a summary of what I did at the Chromosome 18p- conference this year. I hope you enjoy reading this blog post. In case you’re wondering, the links are Thomas’, Camilla’s, and Chromosome 18’s website.

Here are some similar blog posts: https://lilliandarnell.com/2018/06/15/my-adventure-to-surprise-part-1/ and https://lilliandarnell.com/2017/09/13/annual-chromosome-18p-conference-2017/. Anyway, I hope you enjoy!

June 30th: 

I woke up at 8:30 am the next morning to plug up my electronics. After I did that, I fell back to sleep until 10:00 am or 11:00 am. Once I woke up again, I felt much more relaxed and relieved.

So I took my time eating breakfast, getting dressed, and eating candy (it was Candy Day). After I finished eating my candy, I went to the elevator area to head down to the lobby.

So I waited for the elevator to come. I got down there at 11:30 am and I stayed down until 11:40 am when I started to get hungry. I ran into a lot of my 18 p and q friends as well. So I headed back to the elevators to head to the room, I ate a fruit bar and grabbed a sip of water as well in the room.

The elevators had funky music playing and had blue lights on. It took some getting used to that. Anyway, the elevators were interesting. You could actually hear the robotic voice of the elevator on a different floor and you could hear the elevator stopping at your floor before it even opened.

Once again, I headed back down on the elevators. I got back down there exactly at 11:50 am and I chose a good spot to sit where I could greet my friends. Camilla came and gave me french fries.

After I finished eating lunch, I chatted with Macy through Facebook Video Chat. I took a selfie right there too as well. I went up to the room again at 5:00 pm to eat dinner and decided to check out the 5th floor early so I was comfortable with where everything was.

After that, I went to the 7th floor to take a sneak peak of the pool. When I finished, I went up to the room to get ready for bed and finish chatting with Macy for the night.

Around 12:30 am, I fell asleep as I knew that Sunday would come more quickly if I went to sleep earlier.

A selfie of me.

See part 3 here

Annual Chromosome 18 Conference 2018 Part 1

Hey, everyone! I just got back from a trip to Baltimore for the annual Chromosome 18 conference. This blog post is a summary of what I did at the Chromosome 18p- conference this year. I hope you enjoy reading this blog post. In case you’re wondering, the links are Thomas’, Camilla’s, and Chromosome 18’s website.

Here are some similar blog posts: https://lilliandarnell.com/2018/06/15/my-adventure-to-surprise-part-1/ and https://lilliandarnell.com/2017/09/13/annual-chromosome-18p-conference-2017/. Anyway, I hope you enjoy!

June 29th: 

We woke up early to get to the airport and through security. This time I went up the escalator with Camilla holding my hand since I was scared while Thomas went up the stairs.

We got on the airplane right on time. We saw a beautiful sunrise as we were flying up into the sky. The sunrise was amazing. We sat on the first plane for about an hour and watched clouds go by.

I only had apple juice and water for the first plane flight since the flight was quick and because I wasn’t hungry. I also played a few games on my phone and tablet as well and read a book. Once we landed at the McCarran International Airport which is in Las Vegas, we sat down for a couple of minutes before we pre-boarded the second and final plane flight.

That flight happened to be the longest flight ever. Anyway, on that flight, I had honey roasted cashews, Fritos® chips, and lightly salted peanuts (they stopped making the honey roasted peanuts).

I also had apple juice and water again on this flight. I played some games on my tablet and on my phone. I even read a chapter in the book I was reading. We sat on the plane for about 4 hours. Once we got closer to Baltimore, I started recording our landing in Baltimore.

Once we landed, Camilla only found one suitcase sadly. Around the same time, Camilla’s friend was here to drive us to the hotel. So Camilla discovered the other suitcase was held back in Colorado but it came in 2 hours later.

Camilla’s friend eventually went back to get the suitcase for us. We discovered that we were the first ones to arrive at the hotel so it was a little boring but I was able to keep myself busy.

I talked to Macy Miller (a close 18p- friend of mine) through Facebook Messenger. We were both very excited to see each other again in 2 days. I also texted Rebecca Parker (a close 18p- friend of mine) and Katie Baker (a close friend of mine) to let them know I was at the hotel.

Camilla ordered dinner from room service which was french fries for me. I was so tired that I fell asleep without cleaning off the bed of my stuff and without turning off the booklight.

A selfie of me on the airplane

Pretty sky.

Awesome sky.

Pretty sky.

Outstanding view!

Striking view!

Cool sky!

See part 2 here

Fundraising for the 2018 Chromosome 18 Family Conference – Rainbow Balloon

Hey, everyone! Remember in previous years when I sold prints or copies of my art? I have interesting news!

I’ve decided to sell prints or copies of Rainbow Balloon to fundraise and help my family attend the annual Chromosome 18 conference. The print will be about an 8 X 10 size and mounted on foam board or similar ready to hang.

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: Last year in July 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.

The really fun part is that YOU get to choose your own price! The base price is $15 – $25 to cover cost of printing, mounting, and shipping (US Only – Our overseas friends can email my mom at Camilla Downs @ gmail.com if you’re interested in purchasing a print).

Use this Paypal link and enter your own amount over the $25 base price. For example, if you want to donate $50 towards my fundraiser, then you would enter $75. Go here.

OR …. If you simply want a photo quality print (minus the mounting), the base price is $15 to cover cost of printing and shipping. For example, if you wish to donate $25 to my fundraiser, then you would enter $40. Use this Paypal link. (Please note whether you want “Just the Print” or “Mounted Print” and the Name of the print you are buying)

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.

I want to check out the swimming pool and have fun with new and old friends. I also want to explore the city if the weather and temperature are good. I also want to check out new restaurants.

Please visit this link to see a summary of all the drawings being offered. Thank you! https://lilliandarnell.com/2018/06/06/fundraising-for-the-2018-chromosome-18-family-conference-in-summary/

Here’s a story inspired by Rainbow Balloon:

Once many years ago, there lived a smart unicorn who longed to travel the world. The unicorn was named Rainbow. So one day, Rainbow found some harmless fire and Rainbow found some rainbow paint, rope, a small piece of metal, a basket, and plastic.

Rainbow also managed to find a picture of what Rainbow wanted to build. So Rainbow set to work on making the thing in the picture. First, Rainbow used the plastic since she already had a mold to work with.

Second, Rainbow used the rainbow paint to make the thing look outstanding. Third, Rainbow used the rope to connect the basket to the first part of the thing. Last, Rainbow attached the brake (metal) and fuel (fire).

Now Rainbow needed a name for the thing. “Why not just name it after me?”, thought Rainbow. So she figured to call her project Rainbow Balloon. So Rainbow traveled all over the world at last.

So if you see Rainbow the unicorn and her balloon, wave and she just might wave back with her hoof.

Here’s a story inspired by how I feel about attending the Chromosome 18 Conference:

Once many years, a little girl named Rainbow loved traveling to new places. One day, Rainbow decided to write a story. “Hello! My name is Rainbow. My family and I have been going to a conference called Party Dancers for many years”, wrote Rainbow.

One day at the Party Dancers, she faced many fears in just 1 day. Rainbow was very determined to conquer more fears. A couple of years later at the Party Dancers, Rainbow met a friend she connected with through Bookworm the previous year and had so much fun. Rainbow knew many friends and people that year.

Rainbow even tried to get in the cold pool. This year, Rainbow was pumped to go to the Party Dancers again since she found out most of her friends would be at the Party Dancers. Rainbow traveled to Sugary Land for the Party Dancers.

Again, Rainbow met the same friend again and chatted and had fun. Now, Rainbow was pumped to go to the next Party Dancers conference. Rainbow finished her story and sent it off to the publisher.

The publisher was very impressed. Many years past and Rainbow’s story was now a best seller book.

That’s the end of the 2nd story.

My Adventure To Surprise Part 13

Hey, everyone! I went to Surprise, AZ for the end of May/beginning of June with my grandparents (also known as The Romano Duo). I would just like to share my adventure with you. By the way, some of the times aren’t accurate. Anyhow, I hope you enjoy!

June 9th, 2018:

I woke up at 7:10 am and we got into the car at 9:00 am but we stopped by the store so Frank could get gas, Patty could get breakfast, and have fun. Anyway, at 10:00 am we were on our way.

The Motel 6 had some decent beds. I was really comfy at 7:10 am so I didn’t want to get up at all. I knew that I had to get up sooner or later though. Once I was out of bed, I was very relaxed and refreshed.

At 12:00 pm, Frank stopped at a gas station. I also ate my lunch when Frank stopped at the gas station. After 12:00 pm, we drove to Fernley and saw the Love’s gas station where Frank stopped for gas the last time.

I saw the mountains that hide Reno and Sparks shortly around 2:26 pm which is always awesome to see. Around the same time, we arrived back in Reno. This is where the 2-week vacation ends.

Selfie of me

That’s the end of My Adventure In Surprise! Thanks to Patty and Frank for making the trip a great experience!

My Adventure To Surprise Part 12

Hey, everyone! I went to Surprise, AZ for the end of May/beginning of June with my grandparents (also known as The Romano Duo). I would just like to share my adventure with you. By the way, some of the times aren’t accurate. Anyhow, I hope you enjoy!

June 9th, 2018: 

I woke up at 5:30 am (surprisingly) but laid there until 6:30 am. When I got up, I went directly to the restroom. Once I came out, I went into the bedroom to put on my clothes.

After I got dressed, I went to eat breakfast and eat my candy. Then I sat down and relaxed until 9:30 am when I was getting anxious. Around 10:00 am, we stopped so Patty and Frank could have their adult beverage.

Anyway, by 11:00 am we were on our way to Kingman. As usual at 12:15 pm, got some french fries in Burger In-N-Out but fortunately didn’t need to go to the bathroom. We were back on the road and we took in views and I talked to Rebecca through text.

We arrived at Beatty at 4:00 pm. We pulled into the Motel 6 parking lot and we got most of the stuff we needed for the night out of the car. By the way, Robert came too but anyway, we went to Denny’s across the parking lot in the heat.

When we were done, we went to the store that has candy, food, and more. We went through the back door to get to Motel 6 (the hotel we stayed at). Anyway, I finished eating dinner and jellybeans. After, I got ready for bed and stayed up. I fell asleep at 11:30 pm.

Selfie of me before going to bed

Selfie of me in the car

See part 13 (last part) here