March 30, 2016

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!

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