July 25, 2012
The Christianville Spirit
The Spirit that Opens Your Eyes
July 25, 2012-TCS # 309
So, You Know, that old 90’s song, “This ones for The Girls?” Well, for this week’s Newsletter, I’m going to put a twist on that song via a tribute to the Parents of The PTLS Family. I’m calling it, “This ones for The Parents.” For a little reference, “This ones for The Girls” is more of song to empower women. Anyway, I owe all parents of PTLS Kids a huge thank you, for not only being the wonderful you and raising kids at the same time. But, most of all, I want to Thank You for being willing to talk to me, learning about me, and getting answers to those questions that have been bugging you to ask about what It’s like to have PTLS. Now, on that subject, the funny thing about the questions that are running through your mind are probably you are thinking, anyway, that they must be the most absurd questions that would ever come out of your mouth. But, once you hear it come out, it’s huge relief and there is actually an answer to the question. The thing that the Parents of Every PTLS Child has is that They think that they’re the only ones that have to deal with whatever they’re child does, whether it’s hitting, gagging, not eating, mumbling and not talking..the list goes on. But, Believe it or not, after talking with My PTLS Sister for so long, I always thought I was the only one who did certain behaviors or felt a certain way. Now, having talking to someone that has PTLS, we find that when we compare notes, we are very similar. Now, of course, we all know that there are different Parents, different Parenting Styles, and come from different backgrounds. But, the major thing PTLS Parents have in common is their going through, roughly the same thing and shouldn’t feel alone. Bottom Line though, is that we all have our own lives and our own junk that we deal with everyday that, its awesome that on top of that, many appreciate the fact that I might be able to help answer questions and it’s awesome that they want to talk to me and get my opinion on different things. And, yes, some people like to test my knowledge on all the stuff I know and things I’ve done, and I like to share my knowledge, so ask away! Honestly, I’m honored that people take the time to talk with me about anything and I feel so loved by Everyone, it’s a great feeling. By The Way, on the day that you meet me, Please tell me who you are and where your from, before you jump into the “I know Everything about You and I feel like I know You” thing that most people do when they meet me in person. Then again, the first thing I said to Dr. Jen Arnold from The Little Couple was “I’m your biggest Fan!” so, believe me, I understand. All in all, though Thank You once again for meeting me and talking to me like I was your own, and most importantly, taking the time to get to know me. But, even more so your children are very blessed to have you as their parent who cares so much about them, try to learn everything about them, and are such strong, wonderful parents; I’m happy to know you all.
Thanks for Reading The Christianville Spirit. Be Empowered to be a PTLS Parent.
July 18, 2012
The Christianville Spirit
The Spirit that Opens Your Eyes
July 18, 2012-TCS # 308
OK, Everyone, I’m Back! Well, I wasn’t gone that long but, what I’m about to tell you is why I didn’t write My Newsletter last week. You See, As I’ve mentioned many times, I have a rare chromosome duplication on dup.17p11.2. For those who don’t speak “Medicaleez”, that means that a part of my 17th chromosome was duplicated. By the way, a Chromosome is everywhere in your body and the thing that makes up all your features, behaviors, and other things. Anyway, after being diagnosed with dup.17p11.2(now known as Potocki-Lupski Syndrome) at 4 Years Old, it took some time before others were diagnosed. Now about 16 Years Later, Families that had people with PTLS started appearing. Eventually, being 4th in The World became much less lonely. So, 3 Years ago, we had the very first PTLS Conference to teach us veterans, if you will, and those who just got diagnosed, information about Potocki-Lupski Syndrome and all those crazy years of research. So, that brings me to Today. It started as sort of a “We have to have the conference this year, but don’t know when”. Well, the dates that were released were from Thursday of last week to Saturday. So, that was what we did these past couple days, was go to the 2nd PTLS Conference in Houston. By The Way, I should say that in case you don’t know, it was because of the great Dr. Potocki, Dr. Lupski, Pilar and the Lupski Lab Team, that we had it at Texas Children’s Hospital in Houston, Texas. Anyway, The Conference was really wonderful and it was awesome to see old PTLS Family Members and also, meet new ones. So, My Mom and I drove down to Houston on Wednesday to be as My Mom calls, “The Welcoming Committee” for those people who wanted to come early, either to adjust to the time zone or make it a Family Vacation. By The Way, I should mention that there was a Family Member who came all the way from Australia (which is a 22 Hour Difference). On Wednesday Night, we had dinner with a couple family members and then, after dinner, we started meeting new family members that we thought were coming the next day. On Thursday, we got up early and met a couple more family members at Starbucks and then, the rest of the wonderful PTLS Family Members. During the day on Thursday, The “Cool Parents,” The Lu’s took me with them to the Houston Museum of Natural Science and that was the coolest. When we got there, we found out that the museum was bigger than we had thought, it was 4 Floors of stuff to be exact. We had a fun time checking out everything from a Titanic Exhibit, a little Chinese History, and Dinosaurs that had the coolest display! It was a White Background, The Dinosaurs, and Colored Lights below them. This place was big though and it took the whole “Everything’s Bigger in Texas” to a new meaning. I want to say Thank You to The Lu Family (who I’ve appointed my “Museum Buddies”) for taking me and Thanks to the Museum Staff for teaching us new things. Anyway, that night we had a Desert Meet and Greet where we got meet lots of people. So, on Friday & Saturday was the conference itself, luckily though the weather held up for us to walk up and down the street, from the hospital to the hotel. By The Way, the weather was rainy most of the time until it got sunny on Saturday. For the most part, the conference went off without a hitch with the exception of the Fire Alarm going off at the beginning of the conference on Friday and The Mic going on and off. but, then again it was Friday the 13th also and that didn’t help. On Friday Night, after the conference Day 1, we had dinner catered at the Houston Children’s Museum. Again, it took me to hang out with My “Museum Buddies” to show me that in fact, they had opened more of the museum than the last conference. For Reference, The last conference in 2009, opened one area. This Conference, they opened the same area, the down stairs, and an exhibit called “Flow Works” outside. Now, I have to say that although I didn’t spend enough time playing, because it was overstimulating to me to hear too much noise, “Flow Works” was probably the most awesome part of it. On Saturday, we had a more personal approach to the information we heard the day before. We had 3 Options, one was about Behavior, 2nd one was about Feeding and Swallowing, and the 3rd one was the Parental Discussion hosted by My Mom and each one was given an hour each and split into 3 Hours. So, the Behavior and Feeding/Swallowing went all 3 Hours and My Mom’s was during the 1st and 3rd Hour. If I had to choose the best one, I would say the 3rd Hour of My Mom’s Discussion. The reason I say that is because the Feeding/Swallowing and Parent Discussion was on the same floor while the Behavior one was the floor below it and sat next to the Blood Drawing Room. Now, as I said a couple times before, I don’t like the sound of People or Animals in Distress so I had no choice but, to sit in the Swallowing one. And, later on Saturday, us and 2 other PTLS Family Members went on the Metrorail to and from Downtown Houston. and, that was really cool too. One thing I didn’t realize is just how well known, a role model, and how famous, people see me as. Honestly, I know that I’m well-known because I was written in Medical Journals and I’ve been around a long time. but, I didn’t know that to some Families, I might as well be Justin Bieber, Hugh Jackman, or Brad Pitt. In My View, I’m just me, I have the same curiosities and quirks about me that anyone else does, I just happen to have Potocki-Lupski Syndrome and be the representative of what the future might hold for most of the Young PTLS Kids. So, All in all, I would like to thank the PTLS Family Members for coming to the conference (I REALLY hope I got to talk to Every one of You and I know, I didn’t get to talk to everyone as long as I’d hoped; but, hopefully, we can meet sometime in the near future) Thanks to the Staff of both the Houston Museum of Natural Science & Children’s Museum; Dr. Potocki (Duchess Potocki), Dr. Lupski(Lord Lupski), and Pilar (Dame Pilar) for helping set all this up and being a part of this; and, finally, My Mom, for helping putting all this together and a Plus, for being My Mom.
Thanks for Reading The Christianville Spirit. If it wasn’t for having PTLS, I wouldn’t have met so many wonderful from around The World.
July 4, 2012
The Christianville Spirit
The Spirit that Opens Your Eyes
July 4, 2012-TCS # 307
Well, My Readers in The United States, “The USA”, “America”, or whatever you like to call it; Happy 4th of July! For those outside The United States, July 4 is just another day. You See, every country in our lovely World of 246 Countries, we have our own little “Special days” in our own countries. So, for some a simple day like July 1 or October 26 for example, to you in one country is just another day in the week or work week, depending on wether it is part of the work week or not. For the record, July 1 is Canada Day and October 26, which is also My Brother’s Birthday is also, the National Holiday of Austria, respectively. Anyway, each one country in our world of 246 countries have their own day. Of Course, the meaning of the National Holidays are different and some National Holidays are set on an easy day like June 21, because it’s The First day of summer, the Summer Solstice, and The Longest Day of The Year. In Greenland, their National Holiday is on June 21 because it’s the longest day of the year, where (and, I kid you not) it stays light out for 24 Hours and you can say the same the Winter Solstice, it’s dark for 24 Hours. So, June 21 makes sense for a National Holiday in Greenland for that reason and again for the record, they call it “Midsummers Day”, respectively. Also, there are National holidays the we make our own like St. Patrick’s Day, the National Holiday of Ireland on March 17 that we here in The US, Celebrate as well. Now, back to My Country, The United States of America, we have 2 names for today, we call it The 4th of July most often but, it’s technically called Independence Day because it was the day that a document known as The Declaration of Independence was signed and that was what made us, The United States of America and to be free. So, as a result, we celebrate Independence Day with Fireworks, Pomp & Circumstance, Good Music, and Good Food. However, when I was younger, I was scared of Fireworks and they hurt my ears because I had hypersensitive hearing. The fear and hurting of My Ears from Fireworks lasted until I was 10 or 11. All in all, we have our own National Holidays to celebrate, no matter where you live. By The Way, I’d like to wish, My PTLS Sister, Danielle, a very Happy Birthday because she was actually born on The 4th of July.
Thanks for Reading The Christianville Spirit. Celebrate not just your own National holiday but, maybe others as well.