The Christianville Spirit
The Spirit that Opens Your Eyes
May 30, 2012- TCS # 302
So, For This Week’s Newsletter, I want to share a story with you about how My 3rd Family, My PTLS Family and how they became my PTLS Family. So, I was diagnosed with dup. 17p11.2(now known as Potocki-Lupski Syndrome or PTLS) at age 4. There was not much known about it, so MY Mom did the best she could and I just enjoyed life being myself. At the time when I was diagnosed, I was 4th in The World and 1st in The United States; I didn’t know if there were people just like me around the world, and even in my own country. So, as I got older More kids were being diagnosed and I started meeting Families with “People like Me” but, for the longest time they were addressed as “Families with PTLS Kids.” After more adding of more families, I changed how they were addressed because I starting growing attached to them. Because the families themselves had someone, who in My View, was “Just like Me,” they felt more like Family to me not just friends or people. Then, came My 23rd Birthday, or what’s now known as the first PTLS Gathering. You See, My Mom had this idea that we should spend My Birthday with My Smith Family in Atlanta and we figured while we were there, We’d see if we could meet up with other PTLS Families. So, I told, who we’ll call PLTS Member, Samantha Pennington, about it because she lived in Nashville which was a couple hours drive from Atlanta. Not to mention also, we could meet up again with The wonderful Pulleys there too. So, Samantha (or now known as Aunt Samantha; more on that in a minute) spread the word on the little Facebook group that we had, I was going to be in Atlanta that weekend and she said she wanted to come down and meet me. So, before long, it turned from just another birthday party to a Mini-PTLS gathering so people could come and celebrate My Birthday, and we could all meet. It was surprising who wanted to come and meet me. people were coming from as far away as Wisconsin and I told My Mom, “These People feel like Family to Me” Well, near the same time that I was going to go to Atlanta, My Dad wanted to go on a cruise, long story short, the cruise was moved to be during the weekend with My Birthday/PTLS Gathering which people from across the country were coming to see me. So, I had a very tough decision to make, go with Dad on the cruise for 7 Days or The PTLS Gathering. Now, for the record, the decision was tough because I don’t like to disappoint people and not to mention, I hate confronting people. and, one of his comments, let’s just say made the passion of PTLS Family and having PTLS burn! He said, “You’d rather hang out with strangers who you haven’t even met instead doing this(the cruise) with your dad/family” and I responded, “I may not have met them(and, some I have). But, they are My Family.” So, to prove My Dad and anyone else who thinks we’re not a “Family” wrong. I gave the PTLS Family Members that I’m close to, official Family Names like Aunts, Uncles, Cousins, and Brothers/Sisters. Of Course, People may say, “How can you be Family, if your not Blood?” and My Answer is that Family isn’t always blood, it can also be People you love. So, I guess in a way, You can pick your Family and This PTLS Family is getting bigger, I LOVE a big Family! Now, as for the Aunt Samantha thing, I call her that because I’m close to her as well as many others, including Aunt Beth, Christina, Aimee, Joey and Shelly. On the Uncle Side, I have Uncle Chris, James, and Brent. And, I forget anyone, I’m sorry. But, here’s a shout out to everyone. I really appreciate these people as well as many others because they keep in tough with me and really care about me, which is important in a Family. Now, Because the PTLS Family has grown, I Love to get to know about people and they get to know me. All in All, As You can see Family is very important to me, wether they are blood or not.
Thanks for Reading The Christianville Spirit. Cherish the Family you Have and Love the ones, you pick.
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