Dear Deshard and Corinthia

I have 18q- and it is part of the 18 Chromosome spectrum.  I love to blog because I like people who read my blog and I think I like to write them too!  I have a brother and a sister.  For the last year we also have an exchange student living with us from Israel.

Have you heard of the British singer Charli XCX?  I love Charli XCX.  My favorite song is “Famous”.  You should listen to Charli XCX.  Write back soon!  See you soon!

Thanks, Talia

Hi Shakia and Ashia

I like your letter. You both sound nice.

I get scared sometimes.  I was scared on Saturday I didn’t want to go horseback riding.  I fell off the horse Skippy and now I don’t want to go anymore.  I petted Stella the horse and like horses still but didn’t want to climb up. Mommy says that it is okay to be scared but we have to do things anyway.  Next week maybe I will want to ride, I don’t know.  I got scared swimming too.  I didn’t want to jump off the blocks.  It was so high up!  School is kind of scary too, everything happens fast and I get confused by stuff.  I wish my  brain was fast and I could talk fast too.  That is what is not easy for me.

I met Rick when I was little.  He took my picture and made me laugh.  He was funny!

Bye from Grace

Hey all

Things have been pretty chaotic since my last post.  I thought I would take some time to respond to the letters you guys have sent in over the last few weeks.  I LOVE them!  The timing couldn’t have been more perfect.  I received them last week (the 16th) and that was a pretty stressful day.  I was heading out to work for 2 meetings that I was nervous about so it was awesome reading your letters on the way.  The meetings went fine, but it seemed like everything was stressful that day.  We found out that my grandpa in Tennessee had to go the ER, the girl whose desk is right by mine was listening to really good but kinda sad music (think John Mayer, Jason Mraz etc.) and then my dad and I got rear ended on our way home.  We’re fine but our van is in the shop for a few days.  🙁  So, your letters put a smile on my face on what was otherwise a rough day. 🙂

I love and agree with all of your different definitions of beauty.  Beauty isn’t determined by how you look, it depends on your personality, how you treat others, and how you use your skills and talents to make a difference.  🙂

First I’ll answer the questions that a few of you asked and then I’ll respond to your individual ones.

College/ Career stuff:  I have both a bachelor’s and master’s degree.  For my bachelor’s I studied Communications.  I like to write, do web design and social media stuff.  I then went to receive my Master of Social Work (which is why it says MSW after my name).  It’s neat because the type of social work I am interested in relates more to advocacy and working with groups of people instead of doing therapy/counseling.  My involvement with PEARLS is a great mix of all my different interests.

Family:  I have one sister named Cara who is turning 22.  She is a junior at Eastern.  We get along well for the most part.

After graduating with my MSW I moved back home with my parents.  Eventually I would like to move back to Ann Arbor because I had more independence since the bus system where I live now isn’t that great.  My parents have talked about moving out there off and on but we will see what happens.  We have also talked about moving down south where it’s warmer.

Living with my condition:  I have a genetic form of Arthrogryposis Multiplex Congenita.  It makes it so that I can’t straighten out any of my joints.  I don’t necessarily have trouble moving my legs and arms, they just can’t move past a certain point.  I have trouble doing things like reaching the top of my head (can’t put my hair back on my own).  After high school I had more energy to focus on independence skills.  For example I can get dressed on my own, depending on the particular clothes I pick out.  Some pieces are easier than others.  A lot of it depends on how I’m feeling too.  One day I may feel great and can do a ton on my own.  Other times I might be tired, sore or getting sick and then I need more help.  I always need help when I’m sick.  It just takes a lot out of me.  I am able to cook a little bit using my microwave and countertop oven.  We also just got a George Foreman grill that I want to practice with.

I’m also small, and have pretty severe scoliosis.  This has affected my breathing and I use a ventilator at night with a face mask.  This gives my lungs a chance to rest but also keeps them open so they don’t get weak.  I use my wheelchair most of the time but can walk short distances.  In fact, last night I took my walker to Applebees (shocker I know haha).  I just get tired and out of breath easily.  I also have glasses and hearing aids.  My vision affects me a lot because this is what stops me from trying to drive a car.  It’s also easier to have someone go out and about with me if I never been there before.  Once I’m comfortable with my surroundings I’m usually okay.  I think the reason I seem very happy is because this my normal. 🙂  I’ve never known anything different so I just make it work.

Now on to your individual questions:

Kiyla:  Awe!!  You’re so sweet.  Thank you so much for everything you said <3.  I’m glad to hear that your cousin is doing well.  I’m sure he will amaze you and your family every day with everything that he is going to learn and do.  Even the simplest things can be so exciting.  Thank you again for writing to me.  🙂

Doriyahna:  Happy (belated) birthday!  Thank you for saying I have a pretty voice, sometimes I’m not sure about it.  If you put your mind to it I’m sure you will graduate college.  What do you want to study?  My dreams as a kid… hm.  I’m not sure.  I know I wanted to be a librarian for a few years because I love to read.  I don’t think I felt too insecure.  I was fortunate that I didn’t have any experiences with bullying.  Instead I just didn’t have a ton of friends.  That got hard at times, especially when there were dances (I only went to one during high school).  I don’t remember ever being overly upset with other people for things like staring or asking questions.  I’m sure it got annoying at times but I kinda just went with it.  I can only think of two or three times when someone was really rude.  Most of the time people are just curious.  Do I feel beautiful about myself- I guess so!  I feel like my overall self-esteem is pretty balanced.  I’m not overly critical or self-conscious but it’s not out of control either.  🙂  Thank you for all of your questions!

Mikayla:  Thank you for also saying you think my voice is pretty.  🙂  Yes, I love both The Fault In Our Stars (TFIOS) and Divergent.  I read TFIOS in one day.  I feel like I related to both Hazel and Gus.  Hazel is a little more calm, quiet and at times cynical.  Some of the more serious / sad things that Hazel said also seemed to hit home.  On the other hand, Gus was much more upbeat, goofy and adorable.   I remember thinking “Awee I want an Augustus Waters!”  Some of my favorite quotes from the book / movie:

“Only now that I loved a grenade did I understand the foolishness of trying to save others from my own impending fragmentation: I couldn’t unlove Augustus Waters. And I didn’t want to.”

“See, the thing is… we all wanna be remembered. But Hazel’s different. Hazel knows the truth. She didn’t want a million admirers, she just wanted one. And she got it. Maybe she wasn’t loved widely, but she was loved deeply.”

“You are so busy being YOU that you have no idea how utterly unprecedented you are.”

To answer your other questions: Yes I have lived in Michigan my whole life.  My short and long term goals… I think short term I want to pass my licensing exam this summer.  I really need to focus on studying for that.  I am working towards my full social work licensure and need to pass the exam as one of the requirements.  Long term, I want to settle somewhere where I can be as independent as possible.  Whether that’s in Ann Arbor or somewhere warmer.  I want to be somewhere where I can get around in the community on my own (at least for some things).  I would like to fall in love and get married someday (I have a whole Pinterest board about it :).  I don’t have a bucket list but maybe I should make one.  I’ll have to think about that.  I have talked with Rick in person 4 times and he is AMAZING!  I love how he says amazing, his personality is fun and enthusiastic.  Very cool.  I’ve included a picture from last fall when I saw him in Ohio for a Positive Exposure exhibit.  I would love to meet you as well 🙂

Eli:  Thank you, that is so sweet of you to say that I’m beautiful in your eyes! 🙂  In my free-time I like to read, watch movies (Harry Potter, The Fault In Our Stars, Divergent etc.) and listen to music.  Right now I’m obsessed with the Sam Smith album.  I also like to go shopping.  My favorite restaurant is probably Applebees.  That’s awesome that you play trivia at Buffalo Wild Wings!  My favorite food is chicken.  I’m not a huge sports fan but I did play wheelchair soccer and hockey for a little while.  I liked soccer more than hockey.  It was a little easier because most of my hockey teammates had been playing for years and basically lived and breathed hockey. So they knew different plays and all the rules.  I was kinda like uhhhh what do I do now most of the time. Haha.

Andrei & Saul:  Andrei, I hope you continue to like math!  Engineering is really important.  I think I was motivated to continue with school after high school because I always loved learning.  I don’t ever remember being told I couldn’t go to college.  I knew it was something I wanted to do.  I also think that my personality has a lot to with it.  I feel like in general I’m a pretty easygoing and happy person.  I don’t get upset about or focus on the things I can’t do.  I would be lying though if I said everything was great.  It seems like the last year or two have been harder.  But that has a lot to do with the fact my back pain has increased some.  Or, I notice it more because I’m not as busy.  It’s hard to tell.  Some of the challenges and struggles I faced during school… I think I struggled health wise and at times socially.  My health was pretty rocky all through about 2nd grade until graduation.  It was during 2nd grade (I think) that I got really really sick and had to be flown by helicopter from the local hospital to the one in Ann Arbor.  I don’t remember it all though.  In 3rd grade I started using my wheelchair more at school.  From 4th-12th grade I used oxygen during the day (like Hazel from The Fault In Our Stars).  After I graduated I was able to come off it because I knew I could ask for it again if I needed it.  I couldn’t do it on my own and during high school I was on my own for most of the day.  So it would’ve been a “big deal” for me to need it.  But when I went to college the classes were only a few hours each.  I was more confident that I would be ok.  It was a little hard if I missed school because I would have to make up my homework and stuff but I always got good grades.  Socially, it was hard sometimes because my friends could do stuff I couldn’t.  I tend to be shy too which made/makes it harder to reach out to others.

I hope I answered everyone’s questions!  Sorry for basically writing a novel.  I like to talk (and write) haha.

<3 Rebecca

Hey George

That doesn’t sound fun getting hit in the head by a baseball.  What I want to do for a career is actually sports related.  I want to study sports management.  I am currently doing an internship related to that and this summer.  I will be taking a college course at a university in Washington DC on sports management.  Feel free to send me another letter and ask me any questions.

Byron

Hey Jason

My dad grew up in Michigan and we go to Detroit all the time.  I like to play soccer as well, along with chillaxing or chill and relax.  My family traits are Caucasian.  Feel free to send me another letter and ask me any questions.

Byron

I have two brothers, Andrew and Michael.  I’m in 11th grade at North Harford High School.  I am 17 years old but will be turning 18 in April.  The chromosome 18 does affect your speech or eyesight.  I didn’t inherit from a family member.  In my free time I like to play with my dog, Biscuit.  Also in my free time I like to read and play with my iPod touch, iPad.

Hi Spencer and Tyonna

I like to sing and dance because I like music.  I put my cds on in my room loud and I dance and sing.  That is fun for me.

Beauty is animals.  I think all animals are full of beauty.  They are just who they are.  They don’t talk, they don’t laugh at other animals, they don’t care about anything but being themselves. I just got to go swimming with dolphins, it was great! They were pretty and amazing!I have two dogs Jackson, a Rhodesian Ridgeback and Roxie, a terrier.  I love them both.  They are always kissing me!

Here is me with Jasmine the dolphin.

I don’t like to do schoolwork because it is hard but everyone always says read read read and I do.

Okay bye!

Grace

Thanks for the letters.  You all live near the Michigan Wolverines!!

Favorite food: Pizza

Favorite food my mom makes: Chicken noodle soup

Favorite food my dad makes: steak

Favorite artist: Araabmuzic  Favorite song: Electronic Dream here is a link to the song

http://youtu.be/sbJDbahs0c4

Favorite place: Florida

Favorite thing to do: play video games and spend time with my family

What is beautiful to me:

Nice and happy people are beautiful.  Nature is the most beautiful to me. Everything is special and different.

Favorite candy: I like kit kats

Favorite subject: Math

Favorite movie: Monsters Inc.

My birthday is June 25, 2006

Favorite Sport: I like to watch the Michigan Wolverines play football with my dad.  I don’t really like to play sports.  I do like to swim a lot.

About me:

I am just me.  I don’t think of my challenges because I am just Jonah.  Everything about me is what makes me me. I hope others see Jonah and get to know me.  I am a very good friend.

I LOVE the Michigan Wolverines!  I want to go to a football game there.

When I grow up, I want to be happy and go to the University of Michigan to learn more.  I want to live in an apartment with a dog and a cat and have my own washer and dryer. I want to have a blue truck.  I will have my family over for dinner.

Rick is a really good friend.  He makes me feel happy and special. He talks to me and takes time to listen. Rick has made me really interested in cameras.  I love taking pictures and videos of people and nature and showing people how I see things.  I like to show people more than talking and show them things in nature that they may not take time to see and love. Like leaves, and the ground that you walk on, and the way the sun shines through the clouds and trees.  I just love everything about being alive.  Being outside in nature is the best place.

My friend Rick took this picture.

Love Jonah

Hi Leah, Veronica, and Yuhyeon

Hey Guys, I love what you wrote.  I have been to NYC I saw Annie I ate lunch at the plaza hotel I took a carriage ride around central park I like Good Luck Charile do any of you like it I also like the saddle club their is Evan a girl named Veronica I like all your names do you like dogs I have a dog named Hank he is 5 and half and I have brother.

Hi

I don’t know what Hunger Games is.  Is it a game?
My favorite video game is Minecraft.  I also like Lego Marvel Superheroes, Sonic, and Ratchet and Clank.
On the Ipad, I like to play Minecraft and make videos.  I make videos using my sister’s stuffed animals.
I love pizza!
My favorite song is Wonderwall by Oasis.  I will send you the song, so you can hear it soon.
If I had three wishes,
1.  Never be sick again
2.  Go to Florida to the beach
3.  Get a swimming pool

Dear Emma, Anna and Jessie!

My name is Talia and I am in 8th grade. I am 14 years old. I go to the Forum School. My favorite thing to do is playing the piano. My favorite singer is Taylor Swift. My favorite song is “Human” by Christina Perri. Chromsome 18 is a special need for people who has it.  I also like to draw.

Talia

Hi Marta Frederica Davide and Luca

Thank you for the letter and photo.  You look very handsome and beautiful.

I am so glad you went on the trip to Rome. What did you see? Did you take pictures and video? Did you make a DVD?

I go on trips but not far like you did. But I go on cheer competition to other states of America. My mom takes me to different countries. Some day I will go to Italy and Rome.

Talk to you later.

Bye.

Hi Rita, Matteo & Stefano!

I am happy to see a letter from you.  I like school okay but I like the weekends more.  I have fun going horseback riding.  I play with my toys and iPad.  I like to watch movies and be home.  No homework to do on the weekends too!

I went to Italy when I was 8.  It was pretty I think but I don’t know.  We were on a big boat and I liked the kids camp on the boat a lot. My mom is 1/2 Italian and my dad is 1/2 Italian.  Am one whole Italian or no?

I have one fish now, Peke.  The other fish Poke died.  My friend William has a whole big tank of fish.

My hair is long but it hurts to brush it.  Mom says that if I don’t brush it, we will cut it short like JJ’s.  I will look like a boy and so I brush it.

Bye from your friend Grace

Hi Marta, Federica, Davide e Luca

I am so excited to get this letter from you from Italy.  I can’t believe this.  A beautiful country I have not yet visited.  You are lucky to live in Italy.

I am 16 years old too. I go to Valley View High school and I don’t like to go to school either. In the mornings when I get ready to go to school sometimes I cry. Because the work is serious and I have to do it all by myself. I get lots of homework. My mom helps me to do the homework. So I am happy.

I will not laugh at your English. It is OK.  One day I would like to visit your country.  If I do I will visit your school. I love to take videos and pictures.

Thanks for writing to me.

Joachim.

Reply to some questions in the letters from Orchard Elementary School.

1.  What is it like to be involved in cheerleading?

I love the smile on everyone. It is just a happy event. So much fun, excitement, thrilling and amazing. Everyone’s heart is racing when we perform.

2.  What part do you do in cheerleading?

I like every thing.  My favorite part is doing a basket throw.  I like to go way up high.

3.  Do you have any brothers and sisters?

I don’t have any brother or sister.  But I have lots of cousins.

4.  What do you like to take pictures of?

I like to take pictures of people especially when I am doing something. Like soccer, baseball, cheerleading, having breakfast with family and friends and cousins, birthday parties, playground, gazebo, my church and swimming. In that way I remember them all the time. Usually I watch the pictures on my digital photo album. It is on from the time I come back from school until I go to sleep.

5.  What do you like to take videos of?

I do the same for videos also. My mom will video tape my soccer, baseball, cheerleading, having breakfast with family and friends and cousins, birthday parties, playground, gazebo, my church and swimming. After I have taken the video I come home and make a DVD.  I will make copies also for others so they can watch it too. I am a lucky boy. My mom gets the discs for me and I know how to make a DVD. Then I write the title on the DVD. Mom helps me to do that.

6.  What does it feel like to win twice in cheerleading competitions?

I am so proud of myself and my cheer team. I know we can do anything if we put our heart into it.

7.  What countries have you visited?

I have gone to London England, Paris, Nantes in France, Lourdes in France, Barcelona in Spain, and Canada.

8.  What is your favorite food?

My favorite food is Belgian waffles.

9.  What are your favorite things to do?

Taking videos, making DVDs and watching them and play and watch wheel of fortune on TV and YouTube. I like to play wheel of fortune on Wii, Xbox 360, Nintendo 64, and DS

10. Do you play any musical instruments?

I was in kindermusic when I was little and I used to play tambourine, drums, wooden shakers, sticks, glockenspiel, and recorder. But I have forgotten how to play the recorder and glockenspiel. I tried piano but it is too hard for me. So I stopped it. The sound of piano keys was hurting my ears.

11. Do you get teased a lot?

Not at all. but if someone is, I don’t know about it. Every one likes me.

12. Do you like any sports?

baseball and soccer.

13. What is your favorite subject?

Reading

14. Do you like to draw?

Yes I do.  I draw my way and I like it that way.

Thank you all for writing all those wonderful and interesting letters to me.  They were awesome! 🙂

Thank you all for writing all those wonderful and interesting letters to me.  They were great! 🙂

Thank you all for writing all those wonderful and interesting letters to me.  They were great! 🙂

Thank you for writing all those wonderful and interesting letters to me.  They were great! 🙂

Thank you all for writing all those wonderful and interesting letters to me.  They were great! 🙂