Annual Chromosome 18 Conference 2018 Part 7

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: http://lilliandarnell.com/2018/06/15/my-adventure-to-surprise-part-1/ and http://lilliandarnell.com/2017/09/13/annual-chromosome-18p-conference-2017/. Anyway, I hope you enjoy!

July 5th: 

I woke up with my leg feeling sore from dancing hard the previous night. Anyway, I got dressed and ate breakfast and got ready to go for a walk around the Riverwalk. Camilla, Thomas, and I walked for about 30 minutes.

Afterward, we came back hot, hungry, and sweaty. So we ate lunch and eventually went down to the lobby. In the lobby, we waited until 3:50 pm for a Lyft driver to take us back to the airport.

At the airport, I was bored so I Facebook Messaged Macy while I was waiting to pre-board the plane with Camilla and Thomas. Right at 6:00 pm, we took off for McCarran International Airport.

During that flight, I wrote a story called A Brave Girl. (Click on the link to read the story). Anyway, I had Fritos, juice, and water on the flight. I also played games, read books, looked out the window, and took pictures.

On the way there, I saw tons of halos around the sun and a magnificent Nevada/Arizona sunset which was amazing welcoming us to Nevada. I walked around without holding Camilla’s hand.

I even went to the public restrooms all by myself.

Anyway, at 8:30 pm, we had plenty of time to wait so we took our time this time. When we finally sat down, I Facebook Messaged Patty and Macy letting them know we made it to Las Vegas.

At 11:00 pm, we preboarded the plane again. The plane was an old Southwest Airline plane. Once we took off, I was tired but didn’t go to sleep. Before I knew it, it was 11:50 pm and we were hovering over Reno.

At midnight, we got off the plane very tired. The airport was surprisingly very quiet and empty.

I even managed to walk through the whole airport without holding Camilla’s hand. Anyway, we made our way back to our car. Once we got some things unpacked, we all got ready for bed.

That is the end of our enjoyable adventure.

Gorgeous Flowers.

Pretty pink flowers.

Amazing flowers!

Along the riverwalk.

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: http://lilliandarnell.com/2018/06/15/my-adventure-to-surprise-part-1/ and http://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: http://lilliandarnell.com/2018/06/15/my-adventure-to-surprise-part-1/ and http://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 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: http://lilliandarnell.com/2018/06/15/my-adventure-to-surprise-part-1/ and http://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: http://lilliandarnell.com/2018/06/15/my-adventure-to-surprise-part-1/ and http://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

My Adventure To Surprise Part 11

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 8th, 2018: 

I woke up at 8:00 am with itchy ankles. When I went into the living room, I noticed familiar swollen bumps (mosquito bites). So I spent the day trying to stay off my ankle but I did get up to pack a few things throughout the day.

I ate lunch at 1:00 pm. I also colored that afternoon until evening. After dinner, I colored until 9:00 pm. I started my schedule and finished at 9:35 pm leaving me 35 minutes to spare so I started playing games on my phone until it went dead.

By that time, it was 9:57 pm so I just helped Patty and Frank with decisions for the trip back to Reno until 10:00 pm when I got into bed. I tried to go to sleep at 11:15 pm but realized I needed to go to the restroom so it wasn’t until 11:30 pm when I went to sleep.

Mosquito bites on my ankle

Mosquito bite on the bottom of my foot

See part 12 here

My Adventure To Surprise Part 10

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 6th, 2018:

I woke up around 8:00 am. I decided to have a resting day. After breakfast, I played on my phones and read. After lunch though, I got ready to get in the pool and only stayed in the pool for 30 minutes.

Afterward, I got dressed and headed into the living room to color some more in the giant coloring pad.

After dinner, I continued coloring and played on my phone some until I started my schedule. As usual, I got in bed at 10:00 pm but stayed awake until a little past midnight.

As you should know, I went to sleep past midnight.

June 7th, 2018: 

I woke up around 7:00 am. So I got up and decided to feel relaxed until the end of my trip. Anyway, I ate breakfast and decided to color in the giant coloring pad. I started feeling hungry again. After I ate, I colored more, read, and played on my phone.

After dinner though, I started coloring some more. Afterward, I took a long break and sat outside until I had to do my schedule. I managed to get into bed at 10:00 pm. I went to sleep shortly after midnight.

Me with a pool noodle

Me with Frank Romano

Amazing sunset

Gorgeous sunset

See part 11 here

My Adventure To Surprise Part 9

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 4th, 2018:

I woke up around 8:00 am. I decided to make that day a relaxing day as well. So, I just played on my phones, ate meals, and colored in my giant coloring pad until my finger hurt. While I took a break, I sat outside and got to see an awesome sunset and a real hummingbird. I was able to get a few pictures (the hummingbird is now a guest visitor at the Romano Duo backyard)

Anyway, I got into to bed around 10:00 pm that night but I stayed up until 12:30 am that night.

June 5th, 2018:

I woke up at 9:00 am that day. Shortly after breakfast, I played on my phones and read. After lunch though, Patty and I went to the Surprise, AZ library (has a real name) to get me new books.

We were in and out in just 30 minutes which was crazy because I usually take 1 to 2 hours in libraries. Anyway once we got back, I colored some more. I managed to take a picture of a fully bloomed rose plant as well that day.

Around 8:30 pm, I sat outside to get fresh air. I also got more magical photos of the sunset. Again,  I got into bed around 10:00 am but played on my phone and read. Around 12:00 am, I went to sleep.

Me wearing a beautiful new shirt.

Sunset

Beautiful sunset

Beautiful clouds with trees

Gorgeous sky

Awesome sky with the sun shining

A camouflaged clock that shows the time and temperature

Magnificent sky!

Unique sky!

Beautiful rose

See part 10 here

The Hummingbird Fairy Wings

Hey, everyone! I got the idea to write a story about a hummingbird when my grandmother Patty of the Romano Duo remarked,”The hummingbird wings look like little fairy wings.” in Surprise, AZ when I was visiting Surprise, AZ. Thank you, Patty! Anyway, I hope you enjoy!

Once many years ago, there lived a hummingbird named Abby who was very curious. One day, Abby wondered, “Why do I have such small wings?”. So Abby asked her mother and her mother responded, “Well, there was a fairy named Rebecca who was very curious just like you, Abby.”

Abby’s mother paused for effect. Abby’s mother continued her story,”One day, Rebecca saw some flowers that had delicious nectar and she starting eating nectar. Suddenly, Rebecca noticed a sudden tingling coming from her wings. ”

Abby’s mother smiled and stopped to catch her breath. Abby said impatiently,”Hurry up, mother! I want to hear more of the story.” Abby’s mother said, “Ok, I was just catching my breath.”

“Rebecca wondered what was happening and asked her mother what happened. And like me, her mother told her the answer through a story. By the time her mother finished the story, Rebecca turned into a hummingbird.”, said Abby’s mother knowingly.

“So Rebecca went to a wizard to get a special spell that would allow her to swap back and forth between a fairy and a hummingbird. And she still can be found today as a fairy and hummingbird.”, explained Abby’s mother. After Abby’s mother finished her story, her mother asked, “Would you like to know a secret?”.

Abby said excitedly, “Yes, please!”. So her mother said, “I am Rebecca. That is my secret now.” Rebecca laughed when Abby said, “I knew there was something magical and musical in you.”

If you see a hummingbird, that may be Rebecca or Abby flying by. Anyway, that’s the end of the story. I hope you enjoyed!