The Christianville Spirit: PTLS Awareness Month Closing

The Christianville Spirit

The Spirit that Encourages

March (Marzo) 30, 2016-TCS # 490

Hello, My Readers! I am Happy to say that We are back to Our Normal Schedule of Writing, My Writing Times have been a bit off This Month and It is about Time that I write on Normal Schedule. Or, Maybe that is just My Routine talking! Anyway, on to This Week’s Newsletter. So, This has been quite an Awesome PTLS Awareness Month! Now, I am Sad to say that PTLS Month has come to It’s Yearly Close, but Remember that PTLS Awareness goes All Year Long! So Keep on wearing your Green Every Day, Every Week, All Year Long! This Month though, was been quite a Successful Month! We sold our Shirts and This Year, Sweatshirts too! We even got a PTLS Billboard! But, Most of Our Success came from You, My Readers and PTLS Family Members who took pictures of their Families wearing Green. Two PTLS Members even had little PTLS Parties to Celebrate PTLS Day! I am Extremely Proud to know that My PTLS Family will come through like that! I am touched, in fact to see that They are called to Action to Wear Green and Spread Awareness in Anyway that They can. That is One of Many Reasons that I love when PTLS Awareness Month comes around. You See, Now that I think about it, before 2007 when PTLS was named, Before There was a Month to Celebrate, It was kind of Lonely. Although Potocki-Lupski Syndrome was not that big of a Deal as It is now. But, then again, I did not really think much of it. I knew that I had Special Needs, I had something called a “Duplication of Chromosome 17” (which I tried to explain to Kids at School about This and Ended up saying “Just Ask My Mom”) but, I did not know what that was or Let Alone, how to explain it, But, I was Proud of It! I thought that all the things that went on in My Head, I thought it just was something that was Unique to Me and only Me. It is Awesome to know that There are Kids and Young Adults out there that are Exactly like Me in Many Ways, as well as The Fact that They think like Me, Act like Me, and Sometimes, Behave like I do. Although, I should add a Disclaimer here that *Not All PTLS Children are alike in Appearances, Behaviors, and Whatnot. Once I started meeting New Families (before 2009, They were known as either, “Families with Kids with PTLS” or “PTLS Families”) , It was a bit weird to Meet Them because At That Time, I didn’t understand fully that They had what I had or really, What to talk about. Today, You would think that The Minute that Me and Another PTLSer would meet, We would start talking and going on and on as if We had known each other forever. But, because Us PTLSers are a bit Shy and A Bit Anxious about Meeting Each Other, We need a Little Help to get started. At The Same Time, It is Awesome to know that They are Exactly like You, so If You and Another Person are exactly alike and then, What is there to Talk about? That is What I loved Most about PTLS Awareness Month, is that We may be in Different Parts of The Country or The World. but, The Knowledge that There are People like Me and Not only that, but, People who look up to Me, is Very Comforting. I have Written many times How Important It is to Me to be accepted for Who I am, To Understand Me, and To See that I am Unique in a Good Way, not Different. To do that, There has to be Awareness and This Month was all about Awareness. Maybe, Just Maybe, People will understand us PTLSers for Who we are, Stop trying to change us, and See that We are Here for a Reason. We do not see that There is a Problem with Us and You should too. Sometimes, I think that When I write that I have Special Needs or PTLS, I think “How is that even Possible?!” I feel like Me, Normal Me! So, From The Bottom of My Heart, Thank You for taking time to Celebrate Potocki-Lupski Syndrome Awareness Month and Celebrating Our Unique Selves. I look forward to Next Year as It is The 10th Year since PTLS was named, So Let’s make it Big! All in all, Raising Awareness helps with Understanding. 

Thanks for Reading The Christianville Spirit. Happy PTLS Awareness Month! Be Seen, Wear Green for the Happy Gene!

The Christianville Spirit: The Untold Story (Part 3)-Meeting The Parents

The Christianville Spirit

The Spirit that Encourages

March (Marzo) 22, 2016- TCS # 489

Happy Spring, My Readers! and, A Happy Birthday to My Sweet, Brilliant (Used in The UK; I Love that Word!), and Wonderful Mother! Happy Birthday to My Good Friend’s Holly Jones and Natalie Hinkin (Shoutout!). I am Sorry for Having quite a Few Absences these Past Couple Weeks but, At least This Time, I was not Off because of Illness, I was Off because My PTLS Brother, Tyler was in Town and I figured that I would spend some Nice Quality Time with Him since I have not seen him in Person in a while. Anyway, On to This Week’s Newsletter. So, Now that I think about it, I have done Very Well with My 2016 Goals, that is except for The Romance One and Working on The Independence One. But, One Goal that I made went Beyond What I expected! Now, For My Veteran Readers, You know all about Lynee because I have mentioned her quite a bit. To Catch Those New People up to Speed, Read The Following Newsletters and It will help you Understand The Story. Enjoy!

• The Untold Story of Lynee (January 2015)
• The Completion of An Untold Story (January 2016)
• The Completion is Just The Beginning (January 2016)

Okay, So Now that You are caught up, You should understand, up to This Point. So, Over The Time that We were in Oregon, It was The Year anniversary of Becoming Friends with Jona. Seems like not much of a Big Deal, but It really is. Anyway, A Day after that, I got another Friend Request from An Extension of This Story, Lynee’s Mom! Yes, You heard Me, Lynee’s Mom! I was Shocked, to say the least! I told My Mom about it and She was pretty shocked too! You See, Understandably, After a Tragic Death of a Family Member especially when It is Your Daughter or Sister, It is going to take a Long Time to Accept or Even deal with Something like that, so, I mean anything that I say in a Very Respectful Manner. When We met Jona, back in January, Her Mom was not Ready at The Time and That is Okay, I am sure that It takes Time. I mean, It took Jona a Year and then, She decided to Rip off the Bandaid and Just do it. Now, Her Mom was another story, She was Very Excited to Meet Me, as I was of Her and So, I gave Myself a week or so to recover from Oregon and then, I was Ready to Go. She warned me in Advance that There may or may not be Tears, but That is Okay if There is. Like I said, Ripping Off The Bandaid, It hurts a lot sometimes! Anyway, so I figured that We would meet on a Day that Lynee would like, March 12th I thought, The Attention to Numbers Side of Me knew that It equalled to 3 and 3 Equals Lynee, Genius! I wanted to do it on March 11th but that was a Friday so Saturday worked. So, When We greeted each other, We hugged quite tightly, “Hi, Miss Watson! It is an Honor to meet you” and then, We sat down and started Talking and Hanging Out. We talked to Each Other as if We have known each other for Years, Now that I think about it. I told them about My Point of View of Lynee and How I saw Her. Then, They (Mr. and Mrs. Watson) told me about How Lynee past away and Their Point of View of It All. That is most likely The Hardest Part for them, but It also helped them, It provided Closure and Love, to know that Lynee was cared a lot about, From My Standpoint. I’m not sure if I told you this but, I have told them quite a Few Times. Let’s Call it a Skipped Story of Stockholm. Believe Me, This Stockholm Story and Lynee somehow come together. While We were at The Event in Stockholm, I was sitting in A Room with some of The PTLS Members that showed up and This Girl, who was Very Pretty, Blonde, and Blue Eyes, came up to Me and Said “Hi, I’m Lenaya (actually spelled Linnea), I have heard a lot about you”, In My Literal Mind, It sounded like “Len-Ay-Yuh”, It is a Common Name in Sweden apparently. She told me that She was from The US but, Living in Sweden now. But, When I told Jona as well as Lynee’s Mom about that and They were both Floored! That of All Names! It was a Sign from Lynee herself, We agreed. The Best Part though was all the Funny Stories of what Lynee was like both as a Kid and Into Her Teen Years. One Story that Her Dad told me that touched me was about A Letter that I had sent to Them after Learning about Lynee’s Passing.

After I sent this Letter to The Watson Family telling them How I felt about Lynee, as well as How I knew her, He told that He was Angry at God at the Time about Lynee being Gone, and The Night that The Letter arrived, He had a Dream with Just Him and Lynee, with Lynee telling him that She was Okay, She may not like Where She was, but She was Okay. She gave him a Gift in The Dream which was a White Stone. When He woke up The Next Day, He was not Angry anymore. To This Day, My Letter sits in an Important Place for Mr. Watson. They did apologize for not replying to My Letter and That is Okay but, I am glad that It got there and They cherish It. I am very Glad that I could be a Part of Their Healing in Their Sadness. I really appreciated hearing their Stories, All The Laughter and The Tears that came with it. I’m Sure that It had to be a bit difficult for Them. They did give me a Gift also. They gave Me Pictures of Lynee from A Modeling Shoot. Lynee apparently wanted to become a Model and She probably would have been a Really Good One. After We got done talking, We check The Time and We had been there talking to them for..Wait for It....3 Hours! All in all, It was a Great (Brilliant!) Meeting and I am sure that We will all be Great (Brilliant) Friends. Thank You for The Love and Opportunity!

Thanks for Reading The Christianville Spirit. You never know who You are going to Touch when You reach out to Others.

The Christianville Spirit: The History of PTLS Awareness Day Rerun

The Christianville Spirit

The Spirit that Encourages

March (Marzo) 9, 2016-TCS # 488

Happy Day-after-PTLS-Day, My Readers! Yesterday was PTLS Awareness Day and It was Awesome! Lots of People sent in Pictures of Themselves as PTLS Family Members, Friends of Theirs, Their Family, Teachers, Therapists, Co-Workers, Oh.... The List goes on! It touched My Heart to see So Many People supporting Potocki-Lupski Syndrome and not only that but, Learning about it and Understanding PTLS as well. My Heart jumped with Heaps of Joy! Now, Don’t worry if You missed out, because PTLS Awareness and Being Seen,Wearing Green is not JUST a Day, It is an entire month! Heck, You can spread awareness and be seen in Green All Year! So, On with This Week’s Newsletter! So, In 10 Years of Writing The Christianville Spirit, I have come up with Great Ways to Explain Things or Tell a Story. Sometimes though, After 10 Years, It is Hard to find a Newsletter that explains something the Best. This Week, I am going to rerun a Newsletter that Explains The Story of PTLS Awareness Day & Month and How it came to Be, for those that are Curious and Wondering what The Excitement of Yesterday was all about. This Newsletter was written back on March 5th of 2014, refer to Newsletter Number 392. Enjoy and Happy PTLS Day!

So, As You all know (or Should Know), March or “Marzo” as I like to call it, Is known as Potocki-Lupski Syndrome Awareness Month and March 8th is PTLS Awareness Day. So, What is PTLS? To give you a brief history of it, PTLS was named after Dr. Potocki and Dr. Lupski in Houston, TX. I was diagnosed with it when I was 3 Years Old and at that time, It was a called “A Duplication of Chromosome 17p11.2.” on March 8, 2007, Dr. Potocki and Dr. Lupski had it named after them. I only found out last year that exact date of it. You See, I can tell you that exact story of how I found out but, I didn’t know the exact date that it was Named. So, in honor of PTLS Month and PTLS Day, coming This Saturday, I’m going to tell you about How I found out the date, The Story of That Day, and Rewrite The Newsletter I had written that day which First Mentioned It. So, without further a due, This is The Story of PTLS Awareness Day. Happy PTLS Day to All! 

So, One Evening, I was curious and was wanting to know about when PTLS, The Name, was first mentioned, after digging through Years of My Printed Newsletter Records, I call them “My Records” for short. Thank You, Grandma Honey for Printing Them :) I read through them all the way back until March 8 of 2007. The First Time I mentioned it (and, I will show you, how I did) I had No Idea how to even spell “Potocki and Lupski”, it is a hard name to spell with such a Literal Mind that I have. As for the Day itself, I remember it quite clearly (although In My Head, At the time, I sort of over looked it). I was going to Senior High School (they have a different structure of Schooling her in Plano) It was My Final Year of High School. Because of a Screw up of My Class Schedule (They put “Job Site” near the end of The Day), So My Mom had to pick me up early because I didn’t have any classes, only the “Job Site”. Anyway, I remember us pulling out onto The Street and as We started driving up The Street, My Mom said, “Guess What?” I answered, “What?”, She followed, “Your Special Needs was Named!” she followed by telling me that Dr. Potocki & Dr. Lupski in Houston at Texas Children’s Hospital named My Special Needs, “Potocki-Lupski Syndrome” or PTLS. I thought, “Finally! I can easily explain about what I had to People!” because before it was just “A Duplication of Chromosome 17” which first of all, I had No Idea what it meant so, It was hard to explain to People and Second of All, Most People, except Medical Doctors, knew what a “Chromosome Duplication” was. So, To say that I am Thankful to Dr. Potocki and Dr. Lupski for naming it, is an Understatement. Thank You very much for all Your Hard Work, Dr. Potocki & Dr. Lupski! Now-a-days when I tell People about it, I tell them that it is Autism-like Behaviors and Very Unique. It also helps to just say it like My PTLS Sister, Danielle says it, “Just Look It Up.” Anyway, so Now I’m going to show exactly what I wrote on March 8, 2007 and I’m going to tell you it is very different from The Way I write now. To Give a You a Little Background, I was in the Middle of one of My First “Christianville Spirit Series” highlighting People that were Important to Me. In This Edition of The Series, happened to be about My Mom.

Newsletter for March 8, 2007: Entitled “Julie Smith-Centeno Edition”.  “CHRISTIANVILLE METRO HIGHLIGHT: Meet Julie Smith-Centeno{or Julie Centeno; whichever you call her}. Julie Smith-Centeno around my house and The City of Christianville is known as My Mom. My Mom is the sweetest and funniest person you’ll probably ever know. In fact, I’ve heard many stories that people are jealous that they don’t have a mom like my mom. My Mom is a Massage Therapist{and, they say she’s good one too} and she also teaches a Anatomy and Physiology Class; {ask her about that one} and yet she’s home enough to take care of 2 Teenage Kids, My brother Michael and myself. oh, and did i mention, she’s SINGLE MOM. yea. if Y’all were in her position i don’t know anyone would make it. but, there’s a chance but, i doubt it. but, as i was saying she’s pretty cool mom. i mean, every now and then i’ll ask her to take me on a drive somewhere because i love travel and stuff and she’ll do it. and, she enjoys it too. one time she even took me to Texarkana and back just so i could see the roads and stand on the Texas-Arkansas line. To the medical world of Houston, TX my mom might as well be known as one of The Capitols of My Special Needs. which actually has a name. It’s called Patocky-Lubsky Syndrome. What makes My Mom so funny{in case you were wondering} is that she comes up with funny sayings and jokes like everyday. so, that’s what my mom is like. the awesome mom she is.” So, as You can see There is a Lot of History behind PTLS Awareness Day! Now, that I think about it, as I was re-typing that newsletter, I’ve noticed that My Writing has changed a lot since that Time as well as The Letters that I typed were smaller than Today. All in all, This Year’s PTLS Awareness Day Motto is “Be Seen...Wear Green”, thanks to PTLS Family Member, Samantha Lamb.

Thanks for Reading The Christianville Spirit. Happy PTLS Awareness Day! Remember, Be Seen...Wear Green.

The Christianville Spirit: A Event on a Plane

The Christianville Spirit

The Spirit that Encourages

March (Marzo) 2, 2016- TCS # 487

Happy PTLS Month, My Readers! Yes, It is that Time of Year, PTLS Awareness Month. This is The 9th Year since The Naming of the Syndrome I have, Potocki-Lupski Syndrome or Duplication 17p11.2. Amazing! So, On the This Week’s Newsletter. So, Recently, We had to take a Unscheduled and Last Minute Trip because We had to go to My Aunt’s Memorial in Oregon. Yes, that is what I said, Oregon! It was Stunningly Beautiful with All The Mountains and Nature. But, Something happened along The Way there. We had to Fly there. Now, Everyone has their own issues with Flying. I normally do not, with The Exception of Children, Crying Babies, and Seat Kicking. So, In order to save a bit of Money, instead of Paying those darn Baggage Fees, We decided to pack as Light as we could and Carry Our Bags with us. It worked perfectly flying from Dallas to Salt Lake City (which has Stunning Mountains!) and I had it down; You put the Bag in The Overhead bin and Jam it in to as Small of a Size for Everyone Else to put their Bag in. However, The Flight from Salt Lake City to Medford, Oregon was not as Pleasant. Now, Keeping in Mind that This Plane is much smaller with maybe 30 to 50 Seats, 2 on Each End. My Mom and I were sitting a Row apart, No Problem! I could maybe handle it, right? Well, The Flight Attendant made an Announcement that only those who had Big Bags were to put their Bags up in The Overhead. “Schnikies!” I thought, What am I going to do now?! “Make Do”, I thought. I had done it before putting it under My Seat. So, When I walked up to My Row, I wanted to put My Bag above, but It would not Fit. My Mom asked the guy, who was going to be My Seat Neighbor to move for a Second, The “Neighbor” did not move very far. And, There for My Mom had to say something that let The Guy know that I had needed a bit of extra help. She said, “He needs a little extra help” and I thought nothing of it at the Time until I shoved My Bag on His Seat and then, sideways on The Floor. I then had to get it over to My End and put it under My Seat. It brought quite a bit of Anxiety on My Part to have to do this and The Guy did not even ask for Help, He just stood there watching me struggle to Get My Bag under My Seat. Once I sat down and My Mom luckily offered to Change Seats with Him to sit next to Me. He, of course, was like “That would be Great, that way I don’t have to Help”, He did not say that, but I am pretty sure that, that was What He was Thinking. After I sat down and thought about What My Mom said (Not her fault at all, She was Speaking up for Me). It made me realize that I indeed need a little Extra Help sometimes. Now, Don’t Me Wrong, I love having PTLS and Special Needs. I would not trade it for The World, but At The Same Time, If I am struggling with Something like that, to me, that is like a Limitation. Something that I either need Extra Help in or Can not do. I know that it is not, but It feels that way. Thinking about it afterwards and Even as I write this, It put a Large Dent in Me. One would not think that Something as Minuscule on a Big Trip would Effect Me that much. It was A Large Dent in My Independence. My Feelings were Very Hurt because of that, I mean The Guy stood Very Close to us, watching all of This Go On, Not Helping. I talked to My Mom on the Plane afterwards about it all and How It Made Me feel. Now, I normally don’t like to admit that Yes, I am Human and I do have Strengths and Weaknesses like Everyone Else, I would rather be treated like Everyone Else on The Plane instead of Someone who was “Special”. When I say that, I mean, that People often treat Special Needs People like Children. My Mom and I decided during that Plane Ride to Medford, that I should get on The Plane earlier to get Myself settled before Everyone Else got on The Plane. We did that on The Flights back home, for Fear that, that same Episode would happen again, and Although It helped me, It also kind of Dented me. I am sure that People were looking at Me like “He does not look like He has Special Needs, Why is He going on The Plane First?!” and to know that, Really Bothers Me. You See, When It comes to those with Special Needs, Some People treat those that have Special Needs as Unequals, They talk to them like They are Not Smart. I was putting My Bags up on a Flight from Portland to Salt Lake City, and I almost pressed the button for The Raft and They said “Oh, That’s Okay”, as if saying, “Oh, He has Special Needs, He does not know any better”.

It made me wonder, Do I have to get on The Plane early Every Time? No Matter where I am going? Or Maybe I should learn to Appreciate The Benefits of getting on a Plane Early, after all My Favorite Seat is The Window Seat.  I just don't want People looking at Me funny.  I mean, I have flown a lot in My Life; Many Places Across The United States; and to London and Stockholm and I have never had trouble like I did on That Flight. Now, Blame it on The Small Plane, The Guy, or The Airline but, that is What happened to Me. Not that I fly often, but It makes me not want to Fly for a While. All in all, I thought that I would tell you, My PTLS Family about This, so that You would Understand and Know, PTLS is a Wonderful Things, but It is not always Perfect.

Thanks for Reading The Christianville Spirit. Treat Everyone Fairly!