The Christianville Spirit: Christian Visits Nebraska (NFM)

The Christianville Spirit

The Spirit that Sparkles

March 25, 2015-TCS # 443

So, My Readers, I have an Exciting and Adventurous Story to Tell You. I went to Nebraska! That’s Right, I went to Nebraska! Okay, I am just kidding, I went to Something else called “Nebraska” not The State of Nebraska. You See, There is a Massive Furniture Store in a Town, West of Plano called The Colony. It is called Nebraska Furniture Mart. To Explain it’s size is that it is 36 Football Fields and 150,000 Square Foot Showroom. Now, That doesn’t even include The Huge Parking Lot and an Even Bigger Warehouse. If You were to look at it all together, It would look like a Mall or a Stadium. So, We would drive by and watch it as it was being built. “What in The World is THAT?!” I would think, each time that We drove by it. As we kept driving by it, It would get bigger and bigger. So, One Day We found out that it was Open, finally, and It was a Nebraska Furniture Mart. I was curious about driving by it and It was really crowded, like the Parking Lot was packed, so we figured that we would go during The Week when There weren’t a lot of People there. So, We went Last Thursday to check it out. We walked in and It was Overwhelmingly Huge! There was a Cop and a Greeter saying, “Do You want a Map?” after My Mom said, “Wow! This Place is Huge!”. The First Stop, There was See’s Candies and As One of the YouTubers that I watch says, “When You see a See’s Candies, always ask for a Sample” Unfortunately, They were not doing Samples just yet. It was a “Soft Opening” to let people come and check it out. The Grand Opening will be Next Month. This Place is Very Different in comparison to other furniture stores because it has a Much Wider Layout than others and The Prices are even better too! The Next Stop, Which is a Must in a Furniture Store, The Recliners! Oh My Lord, My Readers! You should have seen some of these Recliners! There were Soft Ones, Hard Ones, and Then We get to The Massaging Recliners! Now, The Massaging Recliners had various types of Massages. One, It had a Whole List of Buttons saying “Where do You feel Pain?” You could do Upper Back, Middle Back, and Lower Back along with How Intense You want it. There were So Many Buttons, I didn’t know which one to Push. I will say, A Few of Them were a bit too intense for Me but, I found some better ones. One Chair had the Back Massager and The Reclining Part where You put your Feet in and It Vibrates as well as Massages your Feet, And Finally, The Most Awesome Chair that I have sat in. My Mom tried it first and It made her go “Woah!” Not Sure if It was My Mom’s kind of Chair. But, It felt REALLY GOOD to Me. The “It” I am referring to is a Zero Gravity Chair, It leans You to where You are Flat on Your Back and You have Your Legs in The Air, Your Legs are Above Your Heart and According to Doctors, It is The Healthiest Way of Sitting. Well, It certainly would help with People (Like Me) that have “Text Neck”. I could just sit in The Zero Gravity Chair and Read on My IPad without Hurting My Neck. Now, I will answer that Question and Everyone is Curious about, Does anyone else fall asleep in Those Recliners? and The Answer is Yes! Just put on Some Tropical Music and Put Me in The Zero Gravity Chair, I would be Relaxed in Seconds! And, Probably, asleep in Maybe 30 Minutes or an Hour of It. Ahhhhhhh! I got to keep going with This Newsletter! Let’s get up slowly and Keep Checking Out The Store. After We leave The Recliner Section, We passed the Bed Section, just to check them out. After That, We went downstairs and passed Subway (We did not Eat there). Then, Of Course, Being a Guy, You have to check out the Big Televisions and Boy, were They huge. The First TV I saw was (You are Not going to Believe This!) a 90 Inch Television. That is Right, A Ninety Inch Television! I have never seen a TV that Big outside of a Movie Theater in My Life. “They are probably for ‘Media Rooms’ in Houses”, My Mom says. While I was in Big Television Heaven, My Mom went over to the Clearance Section of The Store. I heard a Guy behind me shout obscenities about How Big that 90 Inch TV was, just as My Mom walked away. To Give You a Taste of This Large TV Heaven, Listen Up Guys! A 90 Inch, 80 Inch, and 70 Inch Television. And, Let’s not Forget the New Curved TV. Now, Normally I would not recommend getting more stuff, Because Spending Money on a Trip in Much Better Money Spent, but Just The Idea of a TV that Big and Add in The Zero Gravity Chair, and I don’t think I would ever leave My House. Now, I do have to say that because of My Lack of Depth Perception, The Curved TV bothered My Eyes as well as The Big TVs. But, Hey! One can Dream, can’t they? So, after I leave The Big Television Heaven, I even watched The News on a 60 Inch, I walked over where My Mom was and I could show her all the cool TVs that I found. We were talking to a Guy who worked there and He told My Mom about what it is like to Work there. He said it takes 30 Minutes to get from His Car, Out of The Parking Garage, Downstairs ,and Most Halfway across The “Showroom Floor”. Like I said, This Place is Huge! After I showed My Mom the TVs, We walked through The Computer Section (another Heaven for Me) and Then, We checked out The Texas Section. It was The Kind of Stuff that You would put in a Log Cabin or Rustic Cabin. I sat in a few Animal Fur Chair including a Buffalo Fur Chair. It was Very Weird, I will say. But, Some People are into that kind of stuff. I would rather be near The Computers, The Televisions, or The Recliners Please! After that, We have checked out the Whole Store. According to Many of The Employees that worked there, said that They really enjoyed working there and Even They, Themselves are a bit shocked at How Big This Place is Every Time they go to Work. One Person told me that They are going to build a Venetian “Lifestyle Center” around the Furniture Mart as well as 3 Others within a 2 Mile Radius, They are bringing Toyota here, after all. All in all, I really hope You enjoyed Our Adventure and a Little Tour of This Place. I would really recommend that You check it out. Just Beware of The Those Sections I told you about!

Thanks for Reading The Christianville Spirit. Keep Your Heart as Texas or Nebraska Furniture Mart.

The Christianville Spirit: PTLS on The Red Carpet

The Christianville Spirit

The Spirit that Sparkles

March 18, 2015-TCS # 442

So, My Readers, I have something really Exciting to Tell You about! You See, as I have mentioned before, It is PTLS Awareness Month and The Motto for it is “Be Seen, Wear Green” or “Be Seen, Wear Green for The Happy PTLS Gene”. So, This is The Background before I get to The Exciting Story and I promise you, it is worth reading this part before The Exciting Story. Anyway, Last Month, My Mom was trying to come up with Ideas about PTLS Awareness Month and How to Celebrate It. Well, My Mom thought that it would be a Good Idea to make shirts for Our “Be Seen, Wear Green” PTLS Awareness Campaign. So, PTLS Family Member, Natalie Hinkin asked My Mom, “Do We have any Shirts in Green?” My Mom said, “No, but that is a Good Idea”. Sure, enough Natalie created a Campaign on a site called Booster.com and started selling Shirts with The PTLS Key on It (Because that is the Logo of PTLS) for 2 weeks. We sold over 100 Shirts in 24 Hours (Not Kidding You!) and, 500 Shirts in Two Weeks. Well, on PTLS Awareness Day, PTLS Members all over The World posted Pictures of Themselves, Family Members, Friends, Teachers, The List goes on! Of them in Their Green PTLS “Key” Shirts. That Campaign is still going on, It is at booster.com/beseenweargreen3, Check it Out, Buy a Shirt, and Help Us Raise Awareness about Potocki-Lupski Syndrome. For Those that have already bought shirts and supported us, I Thank You from The Bottom of My Heart! It is amazes me that So Many People are wearing Green for The PTLS Gene! Remember though, that it is not just March to celebrate PTLS, You can celebrate All Year as Well! So, Let’s Hear about that Exciting Story! I am sure you are Thinking, Get on with It! Okay, Okay, Fine. So, Yesterday, was Saint Patrick’s Day and My Mom and I decided to go out to Dinner with a Friend of Hers. We figured that we would also show off Our Green PTLS “Key” Shirts as well. Well, it just so happened that There was a Hollywood Premiere of The Movie, Home across The Street. Well, The People at Good Morning America did a Contest in which a Non-Profit could Win the Premiere in Their City and Money for Their Non-Profit. Well, a Non-Profit in Plano won and The Premiere was held here. So, My Mom and I figured that we would check it out on our way to Dinner, since Our Dinner-mate was in Traffic anyway. Well, My Mom being The Awesome Mom that She is, figured, “Hey! This is Good Opportunity to Pitch PTLS!” We were wearing our Green anyway. So, We stood and watched for a while before we decided to get up close to the Red Carpet. There were Stars there that I have seen Many Times on TV or Heard about from Radio but, have never seen in person. Among Them, Tony Romo (He walked by and No Knew who he was), Jake Pavelka (From The Bachelor, Took me a second to figure out who He was), Kellie Rasberry (From Kidd Kraddick in The Morning on KISS-FM. Used to Listen to Them Every Morning on the Way to School. But, Didn’t realize who She was), J-Si (from a Show called Dish Nation on FOX, I don’t watch that show), Of Course, I can not forget to Mention the Biggest Stars of The Movie, Rihanna (The Singer) and Jim Parsons (Sheldon from “The Big Bang Theory”). You should have heard The Screaming Girls when Rihanna walked by! Anyway, in between when Rihanna passed by and Jim Parsons was on His Way, My Mom figured that She would teach J-Si and Kellie Rasberry about PTLS. After Jim Parsons walked by, We talked more closely with J-Si about PTLS, He was really Nice to Me. He shook my hand, saying, “What’s Your Name” I told My Name and My Mom continued with Talking about PTLS. After People settled down, My Mom was looking around at Everyone and seeing who She could talk to about Me when I noticed a Camera Guy walk past with The Microphone saying, “News Fix” which is a Local News Program that is different than the others. I said, “Mom, That Guy is from ‘News Fix!‘“ Mom is probably “What? What did He say?” I don’t speak as Clearly since after My Braces, A Story for Another Time! I said, “News Fix, like Channel 9!” I think if I would have said, That’s The Guy from Channel 9, She would have got it quicker. She did talk to that guy though and She gave him her Card with The PTLS Information on It. Okay, I am Sorry to say but, I have The Coolest Mom in The World, aside from My Uncle Craig, The Coolest Uncle in The World. He probably would have gotten us ON The Red Capet, Uncle Craig is THAT Kind of Guy. Ohh, The Smith Family, I tell ya! Anyway, as We were leaving heading to Dinner (We stayed a bit too long!) My Mom told me “I was a Media Hog” in a clean way. So, To say that We had an Awesome Saint Patrick’s Day would be an Understatement. All in all, Our “Be Seen, Wear Green” Campaign is going strong and I Thank You All for That! Oh, and Happy early Birthday, Mom!

Thanks for Reading The Christianville Spirit. Keep on Supporting Our PTLS Green!

The Christianville Spirit: Unseen Newsletter about PTLS

The Christianville Spirit

The Spirit that Sparkles

March 11, 2015-TCS # 441

Hello Again, My Readers! I hope that You guys had a Great PTLS Awareness Day like I had. I can tell you that It was An Awesome Day, Lots of PTLS Family Members wore Green, and We got to spend time with a PTLS Family Member on PTLS Day. I Thank All of You PTLS Family Members and Friends from The Bottom of My Heart for Wearing Your Green and Spreading Awareness (as well as Unity) on That Day. So, In Constant Celebration of The Christianville Spirit’s 10th Year and PTLS Awareness Month (Yes, We celebrate The Whole Month, Not Just One Day), I am going to share with you, A Newsletter that You have not seen! You See, There was a Time from October 2006 to October 2008, I wrote My Newsletters to a Few Select People that I now call My Veterans, Before I started writing in Blogger, I wrote on a Site called Yahoo 360! To Explain It, It was Social Media before Facebook. Or at least before I was comfortable posting on Facebook anyway. So, This Unseen Newsletter is not just ANY Newsletter, It is actually One of The First Mentions of The New Name, Potocki-Lupski Syndrome. I call it “Unseen Newsletters” that because I deleted them off Yahoo 360! and Have them printed in My Records. Now, The True First Mention was a Newsletter about My Mom but, I am going to do the Second Mention of it because it explains it much better. To Give You a Little Background, I was in The Middle of The First Edition of What is a Now, The Christianville Spirit Series. The First Series was called “Christianville Metro Highlight”. It was a Series to Introduce My Friends, My Mom, Myself, Family, and Family Friends. I wrote this on March 12th, 2007, according to My Records, It would be Newsletter Number 39. At This Time in My Life, I was getting ready to finish High School. I should mention that I wrote completely differently back then. It was, Let’s Just Say, not as Clearly Written as I do now. So, Without further a due, This is The Unseen Newsletter of The First Mention of Potocki-Lupski Syndrome. By The Way, One More Note, I did Not Know how to Spell “Potocki-Lupski Syndrome” at the time. Happy PTLS Month and Enjoy!

CHRISTIANVILLE METRO HIGHLIGHT: Meet me, Christian Centeno {or known to some as The Editor/Writer of The Christianville Spirit} I am the sweetest and most sensitive person you’ll know. however, just because your sensitive doesn’t mean your dramatic. but, anyway. I live in Plano, TX and i really wish i could move to Atlanta, GA because that where The Smith Family lives. well, most of them at least. one thing i love to see and do is to Travel. Of course, there’s also my love for Road Signs and other  road-related things. I can tell you how to get places the best i can even if i sort of know the area. other thing about me is that I Love the made up things, especially States and State Capitols. In my mind, every person’s body has a State and State Capitol{that is except for me}. In all cases of States and State Capitols, The State Captiol is in the heart. I base all the Cities, Mountains, Rivers, and Roads after things they like and their friends and a hole bunch of other things but, Likes and Friends are the base of it. The next door States to the East are a Great Friend. the State to the North and South are Family Members. and, of course that leaves The West. The State to The West is The Lover or The One or Current Boy/Girlfriend. finally, apparently everyone’s favorite city. Christianville, TN. Christianville is not a real city in Tennessee but, i made it up to be there. the cities around Christianville or otherwise called “The Christianville Metro Area” are called Mapleton, Brooke, Steven, Karleen, Northchester....just to name a few. of course, there is my newsletter The Christianville Spirit, which i write about my life and friends and family. in real life The Christianville Spirit is a newsletter. but, in The Christianville Metro Area it’s actually a newspaper. Here is something that most people who don’t ask don’t know. I have Special Needs. My Special Needs are what is used to be called just “Duplication of Chromosome 17” but now it’s called Patocky-Lubsky Syndrome. I like that name better even though it’s a tunge twister. if anyone wants to know, i don’t let my Special Needs bug me or let it hold me back. and, some people with Special Needs do bug them or hold them back. also, i don’t consider my Special Needs a “Handicap” or a “Disability” like most people would. I just consider my myself if people have to say i’m something, i’ll tell them i just have Special Needs. but, other than i think of myself as Myself. I am who i am. all in all, i’m a pretty awesome guy. Stay Tuned, YOU could be Next!

 So, As I was re-writing that, I realized how Unclear My Newsletter was. Funny how that Works when You read something that You wrote in the Past. I noticed also that I did not do as many Capitol Letters as I do now. All in all, I hope that You understood Everything that I wrote and Everything that I did write, It still means the Same Thing. If There is Something that You are Curious about in This Newsletter or Any of Them, Don’t Hesitate to Ask!

Thanks for Reading The Christianville Spirit. Sometimes You have to go back in Time to see how far You have Come.

The Christianville Spirit: PTLS Awareness Month Kickoff

The Christianville Spirit

The Spirit that Sparkles

March 4, 2015-TCS # 440

So, My Readers, I would love to Wish You a Happy PTLS Awareness Month! Yes, That is Right, it is PTLS Awareness Month. If You can believe it, A few years ago, There was No Such Thing as PTLS Awareness Month, The Saying, “Be Seen, Wear Green for The Happy PTLS Gene” (that is The Extension of the “Be Seen, Wear Green” saying), There was No Logo (The Key), and There was No Such Thing as Potocki-Lupski Syndrome. Before March 8th, 2007, Potocki-Lupski Syndrome was just known as “A Duplication of Chromosome 17”. Now, that is technically what Potocki-Lupski Syndrome is, A Duplication of Chromosome 17p11.2. But, Try explaining that to Someone when You want to tell them how Unique You are. It took many years to get where we are today. We are at 1 in 20 Thousand Kids Now. My Unique Syndrome was named for Two Very Down-to-Earth Doctors in Houston, Texas; Doctor Potocki and The World-Renowned Doctor Lupski (although He won’t admit it Outfrontly because He is a Humble Man). My Mom tried many years to get them to Name It. She, Of Course, had kinda settled on “Christian Syndrome” if They were not going to name it. Funny, My Syndrome, could have been named after Me! So, That is The Background of The Story of Potocki-Lupski Syndrome. So, Why I am I so Celebrative about PTLS Month? It is Just a Month after all, with St. Patrick’s Day and My Mom’s Birthday. But, To Most People, It is just a Month, but To Me, It is a Chance to Celebrate My Uniqueness and Celebrate The Fact that, Yes, I am That Unique. I still Remember, The First PTLS Awareness Day, before Anyone knew about it. It is at a Time when My School screwed up My Class Schedule, meaning that I had to go Home early. In Short, I chose The Wrong Class! Anyway, on March 8th, My Mom picked me up and we pulled out on the street, and start driving home when My Mom told me. “Guess What?!” Mom says. “What?” I respond with. “Your Special Needs was Named!”. Now, at the Time, I needed a Minute to absorb what She was saying, “My Special Needs was Named?!” then, She told me, “It was named after The Doctors in Houston, Doctor Potocki & Doctor Lupski”, She continued, “It is called Potocki-Lupski Syndrome or PTLS!”. I was so Thrilled! I finally could say, “I have Potocki-Lupski Syndrome!”. After about a Year of Figuring it all out and Enough PTLS Families (Today known as PTLS Family Members) were around, we started to tell them. It seems though, now that Everyone knows, They are starting to Make It Something that it is not. It is a Time for Unity in support of Having PTLS and For those who Love us. It is a Time for Raising Awareness. We have a PTLS Foundation that working hard to help support us and It is Important to make everything Positive because We PTLSers see Life in a Positive Light.

In Order Words, Show that We PTLSers matter in The World! We are NOT Special, We are Unique! Guys, PTLS is a Big Gift from God to You. We want to be seen and be heard! Now, Yes, Your Child may be behind and Not Progressing the Way You want them to but, We need to Stay Focused on What all of us PTLSers CAN do, But, On Their Own Time! It is Important to Me, and I know All My PTLS Brothers and Sisters, that You believe in Us and All we can do. We are the ones that Have It and We want you to be Proud of Us. We need you to stay positive for us.  No, PTLS is not Bad. It never is Bad, We are Very Happy People. But, There are things like Anxiety, Irrational Fears, and Being Overwhelmed when We want to have Fun but, We need you to understand us so we have time to adjust. So, I will finish with This, I have gotten word that There is Someone, “Mom X”, we will refer to Her as, believes that My Mom writes these newsletters and Anything else that I write. It really hurts me that Someone would ever say something like that about Me. I am Here to Tell You, that This Newsletter that I Write Every Wednesday is 100% Me. It is All Me, Christian Smith-Centeno, writing this. All that My Mom does is help me Edit it for Missed Words I may have skipped over in Excitement. (The “The, And, Is” gets me Every Time!) So, Thank You to My Mom for Helping Edit This Newsletter, even though I may or may not listen! After All, Every Writing, No Matter What it is, needs a Little Editing. All in all, I hope that You enjoy PTLS Awareness Month and Wherever Your Child is in their progress, Celebrate Your Child and How Unique They are.

Thanks for Reading The Christianville Spirit. Be Seen, Wear Green and Celebrate Our Happy Gene.