The Christianville Spirit
The Spirit that Makes You Wonder
November 8th, 2017-TCS # 569
Howdy, My Readers! Yes, that is how We Texans say Hello. Okay, It is more like in the Country that They would say “Howdy Y’all”. So, Sticking with This Year’s Newsletter Theme, The Spirit that Makes You Wonder. This is something that makes Me Wonder. Often Times, I go back in My Head to all the Big Events in My Life that I thought at The Time would Never Happen. I am sure there are PTLS Family Members that think the same thing, or at least, temporarily anyway. Like for Example, I never thought that I could go to 6 Countries for, because, or with PTLS (2 of Them I did on Vacation). I went to Stockholm, Sweden (A Dream Come True); London, United Kingdom; Madrid, Spain, all for PTLS Conferences on The Road, and Of Course, I went to Roatan, Honduras, Belize, and Mexico (but, I have been to Mexico before PTLS) on a Cruise, without My Mom but, with a PTLS Family Member. That is Something I still to This Day, can’t believe that I did. Because there was A Time I thought I couldn’t go on a Trip without My Mom. As Long as It is with The Right People, I can! But, Sometimes, I go farther back than Recent Memories. Believe It or not, There was a Time before We started having PTLS Gatherings and Yes, Even PTLS Conferences! and, To go even farther back than that, There was a Time when PTLS, Potocki-Lupski Syndrome was not named. Honestly, It shocks me, wonders me, and Heartens Me of All of The Things that I have done since Potocki-Lupski Syndrome was named. But, I go back often to a Moment in between The First Conference and The PTLS Naming. For The Record, We had met Many Families before The Naming of PTLS. In My Head, Who was The First PTLS Family Member We met after The Naming of PTLS? One Family that is The First that I have mentioned meeting was The PTLS Family Member, The Pulley’s from Atlanta. I actually wrote a Newsletter about it and Then, I will continue The Story. This Newsletter was written on December 3rd of 2007; Refer to Newsletter 82 (Unnumbered).
This Past Thanksgiving My Mom and I drove to Atlanta to visit some of The Smith Family. And, it was a lot of fun. We spent a lot of time with family which was good. My Brother, Michael didn’t come because he had to work. There were many cool parts but, one of them was something My Uncle Bruce has and did. Over the past several months he has been working hard at getting his Pilot’s License and a month or two ago he got it. So, one day he took My Cousin Gram and me up in his little Cessna Plane that the Flight School provided. So, we flew over a mountain that was called Stone Mountain and over Lake Lanier to see how dry it was. And, it was pretty dry, In fact I saw a whole boat ramp dried up and I’ve never seen a lake so dry that a whole boat ramp wasn’t covered in water. Another thing that was really cool was also was we saw the beautiful fall foliage. I got to wake up to it every morning in my Grandma Honey’s House; there were many colors like Orange, Red, and Yellow. Before we left, we had a wonderful opportunity to meet The Pulley Family which has a little girl named Ava that has the same special needs as I do and we met them at My Grandma Honey’s House, I was very nice meeting them. We hope to see them again and meet other families as well. All in all, being in Atlanta was a lot of fun.
It was Remembering This Newsletter in My Weekly “What do I write about This Week Question”, that along with The 10 Year Anniversary of The Naming of Potocki-Lupski Syndrome, I realized that This Thanksgiving is The 10th Year Anniversary of When We Met The Pulleys. At That Time, They had recently been diagnosed and They lived in Atlanta where The Smith Family lives also. So, We figured that Since We were going to be in Atlanta for Thanksgiving that Year, We figured that We would met them while We were at Grandma Honey’s House. As My Mom recollects, Ava was 2 Years Old at The Time. At The Same Time, We had My Uncle Bruce with us at Grandma Honey’s House. It’s a Party! Grandma Honey would say. Ava, She just loved Uncle Bruce! At a PTLS Gathering/My Birthday Party in 2009, Ava was Excited to see Uncle Bruce. They gave us a Basket of Goodies as a Thank You for meeting with Them, which believe it or not, We actually still use. The Most Hilarious Moment for Us was when Ava wanted a Rice Crispy Treat and I got one Myself. We did not realize until later, but Ava was allergic to The Eggs in it, She was fine but, just had a Little Red on her cheeks. At The Time, anyway, Ava couldn’t talk yet but only Babble. Today, Ava can Talk quite Clearly and is in a lot of Activities. Something that, like Myself, Ava’s Mom at The Time, thought that She would never do and Years Later, She did. I think that although We have a little bit of Self-Doubt in Us, It is natural and human to do so. I feel that PTLS Family Members focus on The Fact that Their Child has PTLS and It is Stops There. Ava’s Mom on the other hand, Yes, She stopped for a Short Time like We all do, but She left the Station and kept on Going. Ava is Very Successful at where She is now versus Where She was then. Where We are going is Always a Wonder and a Worry, but Where We have gone before, That is What is Amazing! I look back on Ava when She was little and She reminded me a lot of What I was like when She was little. But, I knew what She was going to do when She got older and Ava’s Mom (who I call, Aunt Joey) did not give up, just like My Mom and Many other PTLS Moms. All in all, It is fun to look back on Memories from 10 Years and more.
Thanks for Reading The Christianville Spirit. Never Wonder about us PTLSers because We just Big Bundles of Wonder that brings Joy!
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