Hi I'm Christian, and I would like you to see the world though the eyes of an adult with a Rare Chromosome Duplication, Known as Potocki-Lupski Syndrome (also known as PTLS and dup.17p11.2). This view is shown through My Newsletter called The Christianville Spirit from a city I made up named Christianville.
November 30, 2011
The Christianville Spirit: Thanksgiving 2011
November 16, 2011
The Christianville Spirit: Meeting Samantha Brown/Best Friends Festival
- New PTLS Family Members
- Aunt Samantha and Aunt Shelly
- Aunt Christina
- Michael and I’s Friend, Spencer
- Michael’s Friend, Cass
- Samantha Brown
- Dr. Jen Arnold
November 9, 2011
The Christianville Spirit: Memorable Dates
November 2, 2011
The Christianville Spirit: Why We Have Children
- They teach us that It is okay to cry to something
- They bring us the lighter and cuter side of Halloween as opposed the scary side with Adults
- They tell us that it’s okay to release your imagination without ridicule
- Their Smiles around The Holiday Season; anxiously awaiting Santa Claus to come, brings us, what we call “Christmas Spirit” and they know all about it.
- They let us adults become kids sometimes. Now, of course doing it all the time make you look immature or weird. But, it’s okay to do it every once in a while
- They teach us to slow down a bit and stop and “Smell The Roses”. Meaning stop and enjoy what is in front of you
- They’ll let you join them to watch their shows like “Spongebob Squarepants” and laugh along with it
- and, Finally, it’s okay to go see a Disney Movie because it’ll teach both you and them about the finer things in life.
October 27, 2011
The Christianville Spirit: In My Brother, Michael's Honor
October 19, 2011
The Christianville Spirit: My Thoughts on Anti-Bulling
October 12, 2011
The Christianville Spirit: How to Become an Honorary Local
October 5, 2011
The Christianville Spirit: My Thoughts on Halloween
September 28, 2011
The Christianville Spirit: The Way My Mind Works
September 21, 2011
The Christianville Spirit: People and Animals in Distress
September 14, 2011
The Christianville Spirit: When The World Stopped Turning
September 7, 2011
The Christianville Spirit: The Most Welcoming Countries to those with Special Needs
August 31, 2011
The Christianville Spirit: New PTLS Family Members in Norway
The Christianville Spirit
The Spirit that Sparks Your Heart
August 31, 2011- TCS # 264
So, The number of people and families with PTLS are growing as we speak; which means that there are new people coming from new countries. Now, My Readers, being a Geography Wiz I have to admit I do have My Favorites including the country I live in. However, My Favorite Country in one of My Favorite Regions of The World got a new PTLS Family. The Region is Scandinavia which consists of Denmark, Sweden, Norway, and Finland. By the way, 3 of them being Norway, Sweden, and Denmark are my favorite. So far there is one in Denmark, three in Sweden, and wait for it.. the first in Norway! Now, as you can tell I’m very exited about this one just like I was with the first from Sweden. Norway, though gets my attention for many reasons. The First came after finding out that Norway was near the top of “The Best Countries in The World” List that I discovered in Newsweek Magazine. After that, came a post on Facebook about “The World’s Happiest Countries” from Forbs.com which Norway topped the list. The fact in “The World’s Happiest Countries” article that got me the most was reading that 74% of Norwegians trust each other, that floored me, I was so amazed. Then, out of curiosity I decided to drive around on Google Maps’ Street View, which started in Oslo and turned into a 3 day Cyber-Drive across the Mountains and Fjords from Oslo to Bergen, which by the way in all was a 515 Kilometer drive. After seeing all the Fjords, Mountains, and Pure Beauty; I couldn’t get enough of it. Then, I watched a show called Rick Steve’s Europe, that I had recorded, and it told me that Norwegians love Life (Just like Me), Their Nature Lovers, and they just love the Clean Air and Beauty that Norway is covered with. Of Course, then I did a cyber-drive recently from an Awesomely Beautiful Fjord to a town called Drammen and then, cross into Sweden and drove to a town called Örebro. Now, the Awesomely Beautiful Fjord was so Magnificent with steep hills, a lake in the middle, a road driving along side a steep cliff and a Waterfall coming down the cliff, further down the road; it’s one of those places on earth that gives you an image of what Heaven would be like, it’s that Awesome. Now I can see why Norwegians are Nature Lovers and Why they are so happy, it’s because you have little slices of Heaven only a couple hours (that being 200 or 300 Kilometers, at least) outside of the Nation’s Capitol of Oslo. By the way, I should mention in Oslo that it’s home of the Nobel Peace Prize and They have a Nobel Peace Prize in Stockholm, Sweden’s Capitol too. Now, the only down side that I know of is that it’s Wicked Expensive there (A 50% Tax-rate, by the way), The Food I’ve heard is what alot of people say is dull, and finally, They struggle with acceptance of people like me who have Special Needs. Now, don’t let me deter you or anything but, Norway is an awesome country, I just wish that they’d be more receptive to people with Special Needs. Maybe I need to go over there and help raise awareness and acceptance. That would be one of My Dream Jobs next working with Uncle Brent and his company. All in all, to sum up Norway is like many Slices of Heaven called Fjords and The air is so clear that your lungs will love you forever, in fact it’s actually a Local Joke there; that breathing in and out saying, “ahhhhh” is part of Conversation and a big Phrase.
Thanks for Reading The Christianville Spirit. As along as You enjoy Life, it doesn’t matter where you live. Here or elsewhere.
August 24, 2011
The Christianville Spirit: My Uncle Craig and Kellie's Wedding
The Christianville Spirit
The Spirit that Sparks Your Heart
August 24, 2011- TCS # 263
Hello There, My Readers, I’m Back! Now, I’m sure that you are wondering why I didn’t write last week. Well, actually, My Mom, My Brother, and I were driving a 17 Hour Drive to Ohio for My Uncle Craig’s Wedding. Yes, I know I didn’t let you know but, I thought it’d be fine to give myself a week off. Anyway, This Trip was quite awesome with a couple twists along the way. Now, I’m going to write to you like I would if I wrote this in a Travel Journal. I would write, “The Trip started by getting up early with My Mom, My Brother, and I to start driving 17 Hours to Toledo, OH”. Now, don’t get me wrong, I absolutely love to Travel but, I’d rather drive only 12 Hours and reach our destination. But, it was fun anyway considering we hadn’t gone on a Road Trip with My Brother in a while; Because usually it’s only My Mom and I due to the fact My Brother is going on a Different Trip or has to work. Anyway, so we figured since we were driving out to Ohio that we’d stop and visit 2 PTLS Family Members along the way. On Wednesday Night, We met My wonderful Aunt Samantha in Nashville for Dinner (I address PTLS Member, Samantha Pennington as this). On Thursday morning we had brunch with The Suchlands and Michelle’s wonderful Mom, Sandy, who later was very helpful. The Reason she was helpful was because while we had Brunch, My Uncle Brian was getting sick and we had to take him to The Hospital and Sandy helped guide us up the road to the nearest major town which was 15 Miles or so away, which wasn’t exciting for me or Will. Anyway, after that My Brother and I drove on to Toledo leaving My Mom, My Grandma Honey, and My Uncle Brian at The Hospital. Once we got to Toledo, we met up with Uncle Craig to get our suits fitted for the wedding. For Dinner that night, we had a lovely candle-lit BBQ Dinner which was quite good. Later that Night, My Mom and Grandma Honey came just in time for Dinner but, Uncle Brian had to stay in The Hospital overnight. On Friday, we drove out to a place called Mon Ami on Catawba Island which is the site of Uncle Craig and Kellie’s Wedding, to rehearse the wedding, which by the way I was a part of. On Saturday was Uncle Craig and Kellie’s Wedding Day and I was one of The Groomsmen, along with My Brother, Kellie’s Brother Matt, and My cousin Taylor as Best Man. The Wedding, by the way, was held at a Winery called Mon Ami on Catawba Island. Now, Catawba Island is also nearby Sandusky, Ohio. The Wedding was really beautiful because The Ceremony was underground in a wine cellar and The Reception was outside. While at The Reception, I worked up the nerve to ask a girl to dance with me, other women asked me to dance with them, and the most awesome part was that they served The Wedding Party, which I was included in, first before they served everyone else. Finally, on Sunday we went to Brunch with The Family at The Yacht Club and then we drove home. All in all, it was a Wonderful Trip and a Wonderful Wedding.
Thanks for Reading The Christianville Spirit. Cherish your Family in all ways and Welcome new ones.
August 10, 2011
The Christianville Spirit: My Birthday Week
The Christianville Spirit
The Spirit that Sparks Your Heart
August 10, 2011- TCS # 262
So, As most of You know, Tomorrow is My Birthday. So, in honor of it, This Year; I’ve been addressing this week as “My Birthday Week”. Now, I have to tell you that the friends that we have here are awesome because they are very giving. In fact, I had to 2 big events yesterday; First, My Mom’s business partner, Kim(who I nickname, Kim Kardashian) told me last week that she had Free Movie Passes that she hadn’t used yet, and she asked if I wanted to go. Then, she asked what Movie I wanted to see. Well, My Mom told her that I would go and told her what kind of Movies I like. Now, of course she was expecting an answer like Action or Horror Movies but, My Mom said “He likes Romantic Comedies”, which by the way, she was floored because it turns out that she likes them too. So, yesterday We went to go see Crazy, Stupid, Love which, by the way, is a really good Movie. In Fact, it is what I refer to as a “Soulmate Movie” which means it explores the idea and theme of Soulmates. Now, about Kim being floored by my answer is because most Men (as far as I know) don’t like to watch Romantic Comedies because as they say, “It’s too girly”. Most Men like Action Movies because things blow up or people are killed, you know what I mean. However I like the idea of Romance in Movies and how Love Stories go. Anyway, later on My Mom and I went with Our Friend, Carol, who took us to a fancy place here in Dallas called The Old Warsaw. Now, The Old Warsaw, I believe has some of the best food. It’s one of those places where you eat a 5 Course Meal very slowly. By the way, it consists of Soup or Salad, Appetizer, a sherbet in between, The Main Course, and Dessert. Of Course, My Favorite is the main course, which for me is a Filet with Crab Meat with a really good sauce. My Favorite Soup there is Brie Soup, which is surprisingly good. While we were there, We had a special Birthday Cake and they play “Happy Birthday” on the piano. Finally, There was something awesome that I got today in the mail. Apparently, My wonderful Aunt Samantha and Aunt Shelly, of My PTLS Family, worked on a project where they had people they know from Other PTLS Family members to people that they know as friends to send postcards from all 50 States to her and then, she put them in a book and sent it to me. And, the Best Part is that all of them say, “Happy Birthday Christian” on the back of them. It was soo awesome to know that she and Shelly have been working very hard to do this for Me, it makes me feel very special. And, all those who took time to go find postcards and send them to her in such a short amount of time, I can’t thank you all enough. Anyway, The Point here is around your birthday, people can show extraordinary kindness toward people on their birthdays. But, the truth is kindness has to happen all the time; not just on your birthday or during a disaster but, most of the time, you should be kind to Everyone. All in All here, My Friends are Awesome and Very Kind. And, I wouldn’t have them any other way.
Thanks for reading The Christianville Spirit. Kindness is a great virtue to have and My Friends have it.
August 3, 2011
The Christianville Spirit: Job Interview Questions
The Christianville Spirit
The Spirit that Sparks Your Heart
August 3, 2011- TCS # 261
You Know those thoughts that come up at night? Like ideas about something you should do, or in my case, Write about? Well, what I’m going to tell you this week is one of them. So, the other night I thought about Job Interview Questions like “Where do you see yourself in 10 Years?” or “What is your greatest weakness?” and I thought of the answers to those. Now, why I would think about Job Interview Questions, I don’t know, but, My Guess would be because Employers scour The Internet looking for good employees. Of Course, Most People don’t know this, but the employers look all over the internet; From Blogs, Facebook, Myspace, or anything. They do this because they want to find out what kind of person you are. So, to help myself and them with it, I’m going to answer some. Commonly, the first question they ask is usually Tell Me about Yourself; Well, first My Name is Christian, I love Geography, I’m VERY Routine Oriented (which in Corporate America is a very important thing) and yes, I do have Special Needs called Potocki-Lupski Syndrome. Next, the order of questions change but, generally they ask Where do you see yourself 10 Years?; Well, I see myself being successful in anything I do and living with My future Soulmate and living happily. Following that, They’ll ask Tell Me about/What are your Strengths? Geography, Being Routine Oriented, I get along with Everyone, I follow direction, and Have Great Work Ethic. Next, is probably the hardest one to answer because it’s like a do or die kind of question, What is Your Greatest Weakness?; and, I would probably say that I take things too literally sometimes, I do things kind of slow (Now, depending on where your applying, that can Make or Break your chance of a job) and as You can see as My Mom tells me, I really like to use Capitol Letters (which can drive one who likes Good Grammar, Crazy). Now, this question to be honest with you, annoys me when I hear someone ask it but, Why should I hire You? Because of My good Work Ethic, Being Routine Oriented, being Happy all the time, take direction well and I am good about Following Rules and making sure Everyone else does also. Next, the next to last question, What was Your Greatest Professional Achievement? Well, back in High School, I had an Office Aid job at the school, which I delivered stuff to the classrooms or subject offices. But, the highlight was when I was Parking Lot Attendant and I was to make sure that the Staff and Visitors parked in the right places. I had to write down the License Plate Number of the violator car, which as you can imagine got many staff members very upset. I was even getting bribed by My Teachers. But, I stood firm on the rules and as a result I achieved 100% Compliance for the first time in Many Years. Finally, The last question that usually people forget to answer, have enough information, or will ask a friend who works there, Do You have any Questions for Me? This is a good time to ask about Rules, Pay(this is the ONLY time that your allowed to ask that, NOT during the Interview), Schedule and When do you begin working. all in all, This is a good idea to ace your interview and get a job!
Thanks for Reading The Christianville Spirit. In a Job Interview, Always be Yourself and Be Positive.
July 27, 2011
The Christianville Spirit: Travel in The US
The Christianville Spirit
The Spirit that Sparks Your Heart
July 27, 2011-TCS # 260
So, The other night I was watching TV and nothing good was on. It’s usually like that on certain nights. Anyway, I found a show called 21 Hottest Caribbean Escapes which I knew had been on many times on The Travel Channel but, I’ve never watched it. After a while, I was thinking, “I want to get a stamp in My Passport from somewhere.” I saw all the places on it, and thought, “I want to go there, there, and there” but, then I thought, “There are great places here in the US that are very pretty too.” I asked My Mom about it and she says, “it’s more about the thrill of being in a Foreign Country instead of your own.” And, you know she’s right. But, watching shows like that on Travel Channel, which by the way is one of My Favorite Channels, puts you in what I’ll call an “I really want to go there daze” otherwise known as “The Travelers Daze” and that’s kind of the point of Travel Channel which I like and don’t like. But, anyway, When seeing all the other places in The World and thinking about Places in America, it takes a reminder for even someone like me to think, “What’s so great about America?”. Well, actually, there’s a lot to love about the USA that’s equivalent to things found elsewhere. And, yes, even places in America that won’t have a lot of commercialism. For example, instead going to The Bahamas or Punta Cana in the Dominican Republic, you could go to Key West, Florida; Puerto Rico (which is Owned by The US) and My Favorite Place I want to go, The USVI(or United States Virgin Islands for short). Why? they have somewhat the same culture of The Caribbean, They speak English, and of course the Turquoise Water. And, in case if your wondering they do have turquoise water in Key West. Anyway, if your a History Buff as they call them, instead of going to Roma(Rome) or Berlin, Germany, You can go to one of the many Civil Water Sites dotted all over The South and there are even ones in places like major cities. For Example, in Atlanta there’s the Kennesaw Mountain National Battlefield just west of Marietta. Next, if you love Nature, instead going to Norway’s Fjords(which by the way is on My List), You can go to the Adirondack Mountains/Park in New York State; Yosemite National Park in California; and, Baxter State Park in Northern Maine. Now, if you ask me, My Favorite location would be the Adirondack Mountains or Baxter State Park, even though I haven’t been yet, based on what I’ve read their both are really awesome. If you love Culture, instead of going to Thailand, China, or Brazil. You can go to The USVI(US Virgin Islands), Puerto Rico, Alaska, Hawaii, and New York City. For example, in New York City there’s many cultures in many parts of Manhattan especially in Lower Manhattan or uptown in Harlem. If you like to see how a country works, instead of going to Roma(Rome), Beijing, London, or Oslo. You can go to Our Nation’s Capitol, Washington D.C. In Washington D.C, you can see where The President lives at The White House; Where Congress makes laws at The US Capitol; see all the Monuments and finally, see all the Museums of The Smithsonian.
All in all here, There are many alternatives here in The United States you or I can go to and best of all it’s not that expensive to go.
Thanks for Reading The Christianville Spirit. The sites of America are closer than you think. You just have to Book a Flight or Hop in The Car and Go!
July 21, 2011
The Christianville Spirit: The Study and A Surprise
The Christianville Spirit
The Spirit that Sparks Your Hearts
July 21, 2011- TCS # 259
Hello, My Readers. Yes, I know today is Thursday and I’m a day late. But, after I tell you what happened, You’ll know. So, for those of you who know me well, I have Potocki-Lupski Syndrome(PTLS). When I was 4, I was diagnosed. I went through the first study for this duplication when I was 9, which at that time was unintentional because My Mom knew that I had something but, she didn’t know what. Anyway, so the study was actually about the opposite of what I have, to make a comparison. You See, Potocki-Lupski Syndrome wasn’t what it is today. In fact, it was just know as A Duplication of Chromosome 17(or Medically know as dup.17p11.2) and they were doing a study of a Deletion of Chromosome 17p11.2 or also known as Smith-Magenis Syndrome(SMS). Anyway, Dr. Potocki decided to have me go through it again, only this time as a Young Adult. So, on Monday Night we drove down to Houston for the study, which would happen on Tuesday, Wednesday, and Thursday. Then, on Tuesday Morning we had to be at Texas Children’s Hospital at 8:00AM. After long discussions that were really good, We decided to redirect the study for another time. So, on Tuesday Night while we were waiting to go have dinner with another PTLS Family, that we’ve met many times before, that lives in Houston, I had the biggest surprise. You See, I watch this show on TLC on Tuesdays, ironically, called The Little Couple. It’s about two wonderful little people named Bill and Jen. Anyway, Jen, the star of this show, works in the NICU and Simulation Lab at Texas Children’s Hospital. So, My Mom apparently set up a surprise meeting; so, around 6:00PM she came through the doors to the research area where I was and she drove by in her fancy wheelchair, because the hospital is so big and it helps her get around quicker. When I saw her, I thought, “Wait a minute. Is that Dr. Arnold?!?” I walked out to see if it was her and that’s when I heard her voice when she was asking where I was, and I knew it was her. I said, “Hey Jennifer” because I knew that was her name. As she walked over, My Mom introduced us and she said, “Hi, I’m Dr. Jen Arnold”. So, My Mom and I got to talk with her for a short time, because we knew she was very busy.... And it was so awesome! When I saw her, I thought she was coming for another patient or something. But, little did I know, she was coming to see Me and best of all she knew my name. Now, I know I sound Starstruck, which I was. But, when someone that you watch weekly and are a Fan of knows Your Name, it’s very special. Anyway, she gave me her card with her and Bill’s Signature and I gave her a book of some of My Newsletters. I told her about PTLS and I told her how I see the world through My Eyes, which is Special. So, I asked her how she saw the world through her eyes, so I showed her what I meant by getting down to her level. She told me that she has to looking up a lot and it hurts her neck. She gave her really great giggle. She smiles all the time which is really wonderful to see. She also said we could be Friends and I could send her My Newsletters I write. After we talked with her and she left, I couldn’t stop smiling, even at dinner with the PTLS Family, which we did afterwords. To this day, I’m still smiling because for someone I so admire, and Inspires many people, for her to take time out of her busy 24 Hour day to come meet me is Awesome! After we hugged and posed for a picture. She had to rush home to get dinner for Bill who was at home watching Rocky and Maggie, their dogs. We certainly stay on touch!
So, on Wednesday Morning we had a nice final discussion with Pilar, the genetic counselor, and then we drove home. On the way, we stopped to visit my Aunt Cindy and Uncle Mike in Huntsville. We had an awesome visit!
All in all, It was a great visit. But, what more could you ask for; A Personal Hospital Section, A Personal Room, A Personal Nurse(Mindy and Rosa were great), and A Reunion with Dr. Potocki and Pilar, A great dinner with Laura, Laura, and Allison and all topped with seeing my new friend, Dr. Jen Arnold. Maybe Bill will join us next time. Thanks Jen!
Thanks for Reading The Christianville Spirit. Friends come in all sizes and differences. What a beautiful view of Life.
July 13, 2011
The Christianville Spirit: My Legacy
The Christianville Spirit
The Spirit that Sparks Your Heart
July 13, 2011- TCS # 258
You know those Thought Provoking epiphanies that occur in Your Life. You Know, the ones that make you see the meaning of Life or more along, Your Life. Well, I had one a couple days ago and it was about My Legacy. You See, I’ve heard about these “meaning of life” or “What in the world is My Life about” kind of epiphanies, Rumors says that like Every big thing that happens, seems to occur in Your 20’s. Just like your 20’s, you tell your parents about anything and everything that’s every happened as well as anything that has ever bothered you. Anyway, This Epiphany came about because I was thinking some of My Family’s Legacies and Believe Me, the Smith Family has led many great legacies including My Grandma Honey helping teenage unwed mothers in Maine to her great work-ethic. Of course, the Legacy of The Smith Family can’t forget Popi, My Grandpa who was, to say the least, A Great Man. But, then I thought, “What in the world is My Legacy?” and God in my head spoke, “Your Legacy is to help The Families and to Inspire them”. Of Course, I knew what he was addressing. He was addressing My great PTLS Family and that I need to help them. Now, by “Help” I believe he means not necessarily Support them because That’s up My Mom. But, to Inspire Them. You Know, back when I was in Senior High School, My Friends and I would occasionally sit in this Garden area which was a little walk from the Cafeteria. Anyway, there was this Plaque that read “Friends will come and go, but good friends will leave a foot print on Your Heart that will last forever”. At that time, I sort of understood what it meant and I thought it was sweet. But, I didn’t really understand what it meant. Today, now thinking about it, I do. You See, In a way I’m leaving my print on Many Hearts of members of My PTLS Family and the truth is their doing the same to me. All in all here, We all have legacies that we are here to lead, as little or as big as they may be.
Thanks for reading The Christianville Spirit. Here’s a rare-double dose Inspiration. Find what Your Legacy is and lead it. The Second, is from the Plaque with a little twist of mine “Friends and/or Family will come and go. But, good Friends and/or Family will leave a print that lasts forever.”
July 6, 2011
The Christianville Spirit: Independence Day!
The Christianville Spirit
The Spirit that Sparks Your Heart
July 6, 2011- TCS # 257
So, as most of you know, the other day was The 4th of July or technically known as Independence Day. Independence Day is our National Holiday which was the day that we got the freedom we have today. So, what does it mean? Well, if you’ve forgotten, it’s actually about the day The Declaration of Independence was made on July 4, 1776 from Britain. You See, at that time there were just the 13 Colonies and we were under rule of Great Britain (or England). But, we newfound Americans wanted our own freedom and our own country so we wrote the Declaration of Independence. Anyway, I believe that not only should we celebrate our freedom but, also we should celebrate The States that make up this country because without The States, we wouldn’t be The United States. I celebrate not only our freedom but, also our states. In fact, it would be awesome if during The Fireworks in Washington that they said the name of each state and showed their flag; like if they said them in alphabetic order like “Alabama!, Georgia!, North Carolina!, Texas!”. By The Way, I call it Independence Day because it seems more important than calling it 4th of July. So, what did you do for Independence Day? All in all, Independence Day is an important day for all of us and it’s makes me proud to be American.
Thanks for Reading The Christianville Spirit. Be Proud to have the freedom that you have and to be an American