The Christianville Spirit
The Spirit that Keeps Learning with Hope and Resilience
September 26th, 2018-TCS # 608
So, Happy Fall Everyone! Some People like to call it “Fall” and in Old English, They call it “Autumn.” I like both, The Name Autumn sounds more appealing this year. So, Happy Fall and Autumn! So, onto This Week’s Newsletter! So, I came to a Realization this Week. So, My Mom posted on Facebook the other day, Thanking The People involved with having us Speak in Sweden two times. You See, as of This Week, It has been Two Years since The First Time that We went to speak in Sweden. But, One Comment really made me think. It was from a PTLS Family Member that I know very well and She said that When Her Child was Diagnosed, The First Thing She did was find My Newsletter and that is how She got to know, not only me but, More Importantly, Potocki-Lupski Syndrome (PTLS). I thought to Myself, not that I know what it is like to be a New PTLS Family Member, but What is The First Thing that They want to know? About PTLS, Right?! Well, Yes and No. They want to know about PTLS but, Most Importantly, They want to know if Their Child is going to Okay or not. In Most Medical Situations, from Syndromes to Illnesses and Ailments, They want to know “How Bad is It?” PTLS is NOT Bad for the Record, nor is it as Bad as You think it is. I looked over at My Christianville Classics List (By The Way, New Family or Not, You can always check that List) and I was Shocked to find out that A Newsletter that I had written explaining Who I was and What PTLS was was Not a Classic! So, with that Said, I am going to make it one.
So, Without further a due This is Christianville Classic, “A Family Letter”. This Newsletter was a Part of My “Letters to Loved Ones” Series.
This Newsletter was written on September 25th of 2013 (Refer to Newsletter 369)
So, Let’s Start This Week’s Continuation of My Series, with yet another question. When was the Last Time that You wrote a Letter to a Family Member? By That, I mean, A Family Member can be Your Uncle, Your Cousin, Your Grandma, or even Your Aunt. It can be someone in your Immediate Family, or someone in your Extended Family. It is, believe it or not, Rare to write a letter to a Family Member unless They are Serving Overseas. Thank You for Your Service, By The Way! The Most Common Written Letter is a “Love Letter” but, a Family Letter? Well, Most People will tell you while leaning back, “Ehh, We have Email for That!” True. But, Again it is Rare and Getting Rarer. So, In My Case, Because I have 3 Families (Immediate, Smith, and PTLS Family, respectively) I’m going to write to My PTLS Family. So, without further a due, This is The Christianville Spirit Series, “Letters to Loved Ones!”. For the 2nd Installment of the “Letters to Loved Ones” Series, I’m going to write one to My dearest PTLS Family.
“Dear PTLS Family Members,
Hi! For Those who don’t know me, My Name is Christian Centeno, I am the son of My Mom, Julie Smith-Centeno. although I liked to be referred to as “Christian Smith-Centeno” but, I answer to both. I am now 26 Years Old (I am now 31 Years Old) and Yes, I have PTLS. I am actually proud to say that I have PTLS (or Potocki-Lupski Syndrome). Also, known as Duplication 17p11.2 and Yes, all that Medical Lingo Matters! I have had PTLS My Whole Life, although I didn’t really know until I was about 9 Years Old but, it didn’t really matter much to Me. It doesn’t matter to Me now. For Those that are wondering, “Why am so I Proud to have PTLS?” Because it makes me Unique. Not in a “I’m-Better-than-You” kind of Way but, in a more “I’m One of God’s Many Unique Creatures in This World.” So, People will always ask me, “How do You handle having this ‘disease’?” First of all, It is NOT a “Disease”! It is a Unique Chromosome Disorder, and, How do I deal with it? I have lived with PTLS, My Whole Life so, It became part of My Life. Anyway, The One Thing I wanted to tell you, besides Giving You an Education about It, is that Everything is Going to be Okay! Life through My Eyes, it is pretty Awesome! Excuse Me if I sound like My Mother for a minute, but Your Child is going to Talk either words or through their eyes; Your Child hears and understands Everything and I mean, Everything, Believe Me, I drive My Mom crazy when I hear her talking on the other side of The House and I have always understood what was being told to me; Your Child might want to have a Girlfriend (like I did) or Boyfriend; Depending on the Child’s choice, They could go to Homecoming or Prom (I went to Homecoming, but I didn’t go to Prom); and, Finally, as scary as it sounds, Will find someone and Will get Married (As I plan on doing). A little note about PTLSers having Children, There is a 50/50 Chance of their child having PTLS. As for Me, I don’t plan on having Children for that Reason, Crying or Children/Animals in Distress really bothers me, as well it would be Hard for me to take care of. So, Will they get to Go to College, Get a Job or Drive? Well, College will be up to the Child’s Discretion and Abilities. As for Me, maybe I’ll take a few Continuing Education Classes but, College isn’t high on My List. A Job is a Definite Yes! I have, had one before and I was really good at it. and, Driving...Well, I’ll put it this way, If we lived in a Small Town where Everyone knew who I was, then maybe I would Drive but, considering I live in a Big City, it might be Hard. Of Course, That is not to say that I never Drove before. Because My Brother had me drive around the Neighborhood and When I was younger, We had a Go Cart and I drove that a lot around the yard. So, Your Child will get there eventually, it just takes a lot of patience. So, If you are reading this and you have been here a while, You pretty much know all this. For Those that are New, Welcome to The Family! Remember though, that No Family is Perfect and Remember too, that Family should always come First! I believe that we are literally, a Family, we may not be Blood, but We Are Family!
I Love You All, PTLS Family!
Your PTLSer,
Christian Smith-Centeno”
So, as You can see, whether You are New or a Veteran, We welcome you with Open Arms, a Hug, and Lots of Encouragement. All in All, Family may be what you make of it but, Family is Important!
Thanks for Reading The Christianville Spirit. Remember the Importance of Family!
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