Monday, July 29, 2013


   Sorry that I didn't have a chance to write yesterday! We arrived pretty late at our friend's house and we stayed up and talked. So I was worn out!!
    But  we just landed in Nauvoo today! And let me tell you even though we've haven't had the chance to walk around it is beautiful!! I love it already!! 
   We just finished organising both trucks so that both of my sisters could fit the stuff they traded in each others trucks! Haha took a bit of effort! 
   I'm hoping tomorrow I can wake up early enough to go see the sunrise at the temple just down the street! Should be beautiful! I am seriously in love with this place! I would love to live here, the humidity is just perfect!! I just can't get over how the people made this place from a dump to a beautiful city! Took so much time and effort! So grateful I have the chance to be here! It's amazing what these people went through and experienced! I hope one day I get the chance to thank them for everything they did!
   Well even though its not late I am pooped! Spent way too many hours in the car, and I'm getting up early so I'm gonna sign off for now, but thanks for reading seriously! I need to get some more inspirational stuff on here I feel like I'm just telling you my everyday life haha! Well tomorrow is my favourite day!! Tribute Tuesday!!
Night guys! And thanks again for reading! Feel free to leave questions or comments! 


Saturday, July 27, 2013

Pre road trip!!!

   Tomorrow is ROAD TRIP time!!! I can't wait! Getting out of Utah finally! I love it but I spend way to much time in this state. 
    I'm headed out tomorrow to meet my sister Ali up in Cove Fort then headed somewhere I think Nebraska, then we will hit Nauvoo!! I'm so excited to see this place! I haven't been there since I was little, It'll be fun! Then I'm trading cars with Ali and hopping in the car with Cami (one of the twins) to help her move to Texas! Where ill see Tara (the other twin) and help Cami move into her house! It'll be crazy but so much fun!! I can't wait to travel! Been getting stir crazy in this place!  
     After I help Cami for a bit I fly back to SLC for my surgery the next day. Then that same week I get my EARS!!!! I'm gonna be gone from my house for two weeks! Yippee!!! I might be slow at updating the blog everyday because of travels and stuff. Ill try and update when I can! 
    Thank you guys for reading this it means a lot! I'm gonna start sharing some more stories soon I hope! 
Comments and questions welcome!! 
Over & out

Late post!

   Well I've been trying to figure out what to post and I figured since a lot of people are always amazed by this I would share it! 
   A lot of people with tracheas or trachs are afraid to swim for one reason or the other! Me? Nope I was born to swim! I'm a full out water girl! Ever since I can remember I've been in the pool or the tub just some sort of water! I have learned to swim with a trach I can't explain how to do it, it just comes naturally to me. 
    One story that my mom always likes to tell is when I was a toddler and we lived in VA we were getting the back door screen fixed so I decided to go play outside by myself! Well this wouldn't have been such a big deal except our pool was right up against a brick wall "The Great Whicker Wall" so I could easily lean over and play in the water! And I didn't know how to swim at that young age! So instead me being a smart toddler;) I decided to just lean far enough so I wouldn't fall but could still play! And at the time I had a old fashion band hearing aid (I hated that thing with a passion) so when one of the tubs floated by with a rope around it I just hooked my hearing aid on it and let it float away! 
    Well mom who was getting frantic because she couldn't find me, finally decided to look outside. Now she couldn't whistle because I could fall in. So she quietly snuck around and grabbed me and my hearing aid. Which wasn't ruined in my attempt :). And I had to be watched 24/7 from then on! 
    See I was born to be in water! I still love going swimming and stuff I wish we had a boat though so I could go to the lake and stuff. But maybe later in life! Well it's late and I'm on a road trip so I better go! But thanks for reading!! 
Over and out! 

Thursday, July 25, 2013

Throwback Thursday! Potty time in NEB!

    So sorry for not posting yesterday it was a crazy day celebrating July 24th with the family! Had fun, got to see some amazing fireworks and hang out with Corrina! 
   Well this story isn't as funny as the last one but it came into my head to tonight as I almost peed my pants laughing hard in the car coming home from a mission call opening! 
    I was about 2-3 I think, I got the age wrong in the other story so sorry bout that! And we were living in Nebraska at the time, loved living there so much fun! And my sister Ali was babysitting me and my just older than me sister Lyndsey. Well anyways I was a late bloomer in a lot of ways because of hospital stays and stuff. As I'm told by mom I'm not sure if its right though. And I was watching a show when all of the sudden I had to go to the bathroom so I run over to Ali and sign bathroom in ASL I believe. So she freaks out and picks me up and races to the bathroom but behold my toilet seat wasn't there! I couldn't hold myself up yet on the ring of the big seat yet. So Ali starts yelling to Lyndsey to go find the potty seat well I'm there dancing because I have to go so bad, Lyndsey couldn't find the seat and by that time I was gonna burst so Ali picks me up and just sits me on the loo and let's me go! And as soon as I'm done Lyndsey come back with the seat in her hand! 
    It's not as funny but like I said it came to my mind as I was driving home having to go to the bathroom really bad! It's been a long day and I have to pack tomorrow for the road trip so I'm gonna log off for tonight but any questions or comments will be welcomed and feel free to message me on Facebook! Thanks for reading!! Sorry for no pictures my pictures are all on the mac so I have to get some new ones now! Thanks for the patience!  

Tuesday, July 23, 2013

Tribute Tuesday!! Mmhmmm

   Possibly one of my favourite days now:) 
Lets see so this person is pretty freaking awesome and has been such a inspiration to me through out everything I've been through:) 
   Not sure if this person realises it but I freaking love them! As I love all my friends so much:) it's taken me a while to think of a person to do today, there are so many people in my life and how can I choose just one person to do? Well finally at the end of the day I've come up with this one person, she kept coming to my mind all day so she was the one:)
   This person I've known for a while since 6th or 7th grade and we've been such amazing friends through out it all! Yes hawt babe AMY Im talking about you! 
   I seriously wish I had just one picture to discribe our friendship! But all the pictures on my phone got erased but they are on the computer ill have to upload one later :) 
     This girl is amazing I seriously wouldn't be who I am without this her example! Haha the things we've talked about are amazing. Haha the memories! ice skating,  talks about life and boys, the long walks in between classes, and the amazing hugs this girl gives are wow! I could seriously go on and on about this girl I seriously am amazed by her everyday! The love that this girl radiats is amazing everyone who knows her loves her! And what's not to love about Amy?!
     Amy thanks for having such a impact on my life I will alway look up to you literally ;) and spiritually! Love you so much! Can't believe this is our last year of high school together! Lets go out with a bang shall we? Love you sweet girl!  
       That's all for today folks! Next time ill have to do a guy! Haha we will see! Questions and comments are welcome! I figured out that if you want to comment you have to have a blog so find me on Facebook if you want to message me or anything! Thanks guys 
Over and out!

Monday, July 22, 2013

Just another day.

   Today has been slightly boring. Got good news though! I'm taking a road trip with my sister Ali and meeting up with my other sister Cami in Nauvoo then helping Cami move to TX! Should be fun I'm super excited!!! 
   I've been packing all day for it even though I don't leave until Saturday hahaha! 
   Other than this I've haven't really been doing anything. I really don't have a topic for today. I'm thinking of making it Memory Monday, but that's like throw back Thursday. I'm not sure. 
  Sorry it's so boring today! Tomorrow will be better! Tribute Tuesday! 
Wednesday- wacky Wednesday ( where I find a random story that I like)
Saturday- surgery stories 
Sunday- selfie ( where I tell a random story about myself)
These are my ideas not sure ill do them for now:)  thanks guys for reading! Thanks for everything in fact! 
Random but love this picture! 

Sunday, July 21, 2013

What does longboarding, music, driving, and reading have in common for me? Relaxation!

   Relaxation is a big thing for me, if I can't have time to relax then I get really stressed out. I have to have time to myself, it's the time that I need to think, and to get things off of my mind. 
  Lately I have gotten into the sport of longboarding, it's a cheaper way of getting around, and it's so much fun for me! Mom doesn't like me to do it because she's afraid I'll fall and break my face. Riding around seeing the beauty of riding on trails and just around town is relaxing for me. It just clears my mind gives me more room to think!
   Music is one of the best get aways for me. I can escape everything but still be around people and hanging out. Music touches my soul better than anything. I love playing guitar, uke, and a bit of piano. I'm just starting to learn how to play harmonica, so I can travel and still have my music with me. My iPod is chuck full of music when I have a bad day I grab my beats and I just listen for hours and sleep. When I was in Ohio music was my get away from the pain. That is where I learned to play uke and I fell in love with it. I could take it with me to the hospital and the music therapy people would come in and we would play for a hour each day. I believe it's what helped me get through that ordeal. I still love to pic it up somedays an just mess around and write new stuff along with guitar. I'm not very good but I love it so much! 
   Now me being 17 and having a car I drive a lot. I roll down the windows and I blast my music. I get as faraway from everything I can which is often going to dixie rock or snow canyon and I just sit there and listen for a bit well I relax and just think. I seriously sometimes just want to take off and go to Cali but then I realize that I don't have the time, money, or gas. Which often bums me out. But one day ill get out there!  
   "One of the greatest ways to escape the world but to still be in the world is to loose yourself in a book" I don't know who said it but its so true. The Harry Potter series has always been my favorite and it always will. I grew up with them with the magic and the adventures.  the adventures make me forget the world and the magic makes me remember that there is a better life out somewhere!  
   Well it's a early post today! Last night I had trouble coming up with a topic so I figured once I came up with a topic today I would write it as soon as I got it! So here we go! 
 Thanks for reading seriously thanks so much!

Saturday, July 20, 2013

Hope = superman?

                                            "The S on my chest means Hope" 
    Superman brings hope to many people including me, we all know that he isn't real just for me knowing that there is a superhero out there that stands for hope is amazing to me.
    Hope is a funny thing. We can all hope for things but that doesn't mean that'll happen, it doesn't guarantee anything. But it gives us a feeling that it MAY happen. For me I have hoped for a lot of things but not all of them have happened. I hoped that I wouldn't get an infection, but I got it. I hoped that I could beat the infection, and I did. I hoped that life would get easier and it goes on but that isn't happening all the time.
    See many people when they think of hope I believe that they think that it has to happen, because of the hope they feel.  What we hope for doesn't always happen. 
    I hope for many things like I said before and some of them have worked out and some of them haven't. Either way I've learned that we can't give up. I just have to keep moving forward. And hope some more. 
   The reason I brought up superman is because he gives hope to people for a safer future, he has a lot of pressure on him and he doesn't let that get to him. he helps all he can. He is somewhat of a god to some people. But in actuality it's just an actor with a tough job to do. 
  I love superman and I always will. He gives me hope for a new beginning and a better future. 
   Me and my favourite shirt! Well one of them.

Friday, July 19, 2013

Check ups! And Laser Treatment!

   Today has been busy last night me dad and I drove up to Kaysville, because I had two post-op appointments to follow the surgery that I had on the 2nd of July. ( The ear one) 
  Everything is okay with my ears, the only bad thing is that I can't swim for three months! I am not very happy about that! If any of you know what the heat is like in St. George then you would understand that I am going to die! I can dip my feet and such but I cant get my head wet. UGH! The heat is around 100 everyday and that is the low so I am gonna be spending a lot of time dipping my feet, and going to the river! 
    I want to go to California so I can go to the beach but that wont work because I have doctors and school starting! But I might be helping my sister Cami drive out to Texas next week or something, it depends on how much return tickets are from Texas. Hopefully I can! We would hit Nauvoo, and see all the church sites and things, it would make a great end to my summer. I really hope it works!
   Well this is way off topic hahaha the doctors appointments went great except that I cant swim! We also got a laser treatment so that I don't have hair sticking out from under my ears! 
   Gosh I can't wait to get my ears! I'm so excited only 20 more days! I have several pairs of earrings already but we all know I'm going to be buying more of them! 
  I think this is all for today! I can't think of anything more to write! 
going to Logan tomorrow to spend time with my other Grandma, should be fun! Then on Sunday my nephew Hank is being blessed! So I should have plenty of things to write about soon! 
  Thanks for reading I was looking at the blog and over 2000 views! That's AMAZING guys! thank you so much for sharing and reading this! Any comments or questions, leave them below and I'll get back to them as soon as possible!

Thursday, July 18, 2013

Throw back Thursday! Fence+Big head = not a good combo

Well it's Throw back Thursday, trying this out see how it goes!
   Im telling this story as it has been told to me and everyone else! This story took place a long long time ago when I was still a cute little baby probably around 3-4 not sure. We still lived in Virginia at the time, love living there so beautiful! But anyways so my sister Lyndsey and I were  playing outside on the swing set. And apparently the neighbors across the fence had a really cool play thing that I must have really wanted to play on or something. Because what happened next was quite funny! 
  So we are playing and I get off the swings and I go to the fence and my sister is oblivious to the whole things she is still swinging! But I get to the fence and I found a spot where my body fit through but my head wouldn't follow! So I'm stuck with my body where I want to go; the neighbors playhouse, and my head stuck on our side of the fence.  I start freaking out cause I'm stuck and I can't get out so Lyndsey runs to the house and gets mom. And eventually almost everyone outside trying to figure out what to do in order to get me out! Well my other sister Ali must have been having a bad day or something. Because she came out and I hope I quote this right! " YOU IDIOTS SHE STUCK HER BODY THROUGH FIRST!" Then she went back inside! So eventually we got me out but it's still to this day the favorite story to tell guest when times get boring! I sometimes get embarrassed or I join in! It's quite humorous, thought I share it with you guys! 
  Well that's all for tonight we just got to grandma's after a long day and I'm ready to go to bed! Thanks for reading and like always if you leave questions or comments ill get back to you as soon as I can! 

Wednesday, July 17, 2013

Boring day!

  Well today isn't gonna be as good as yesterday's. or any other day. 
   It was actually quite boring today. Got something's sorted out for school and went longboarding around town. That was a ton of fun the trails could have been nicer but can't complain. Wanna go to Cali and skate though! That'd be fun! The home of the longboard! 
  Went to the temple with my Young Women that was very uplifting for me found somethings that helped me a lot! Ill share those another day maybe! 
  Yeah nothing much today tomorrow we are traveling up north for a doctors appointment (go figures) then just hanging out with the cousins and hopefully Annie at lagoon! 
  Sorry today isn't a very good one I'm still trying to come up with a good theme for Wednesday nothing's come to mind yet! Got a good one for tomorrow though Throwback Thursday!
  Well night, any comments or questions leave them below and ill get to them as soon as possible! Thanks for reading! 

Tuesday, July 16, 2013

Tribute Tuesday! "By small and simple things are great things brought to pass."

  Well this is one of the day ideas that I have I'm trying it out to see how it goes! Hopefully this person doesn't kill me! 
   I met this person about what three or four weeks ago, around there. But anyway I was already hyped up because it was EFY week and what's not to love about that? ( it's a program that youth have a chance to do for the Mormon church) I was signed up with my best friend Annie from last EFY and I was all ready to go party:) but before we can even begin to party we have to meet out counselor and company or group whatever you want to call it. And this is where the tribute person comes in. Our company had thee best counselors ever! Seriously loved them to bits! 
   But one of them stuck out to me especially, yes Amberleigh if you are reading this it's about you. Don't get mad!  This girl is amazing! The things she taught me through example were enough to blow me away. But the things she taught through the Spirit, man no words.  
   I have so many examples but there is one in particular that I would like to share. About Wednesday of this awesome week my stomach started hurting so I tried eating but it made it worse so I kinda stopped eating an stuck to drinking liquids, that night was pizza night, best night of the week! So we partied and stuff and I drank water and sprite, I was starting to feel a little better so we told stories and I tried eating a piece of pizza. Didn't stick well that night though. Ended up throwing it up later. Well the next day I was feeling a bit worse so I finally told Amberleigh and we got some stomach medicine. I think it made it worse not sure though. But we were walking around SLC that day, it was a long but beautiful day.  And at the church history museum (which is pretty cool I might add; well what I saw of it) I got nauseous and we ran to the bathroom and I spit up/ threw up/ gagged. Well as soon as I got out I started having severe stabbing pain in my stomach. So long story short it got so bad that I ended up in the hospital (whoppdeoo) and Amberleigh stayed with me or I think a hour or two not sure.  She held my hand and talked and kept me calm. I may have looked calm on the outside but inside I was freaking out and crying my eyes out. Mentally of course. 
   Well in short my parents finally arrived after most of the test had been done, and she had to go. I remember asking her to stay but she couldn't cause she had to get back to the comp. I don't know if I ever felt so empty after she left. I think that is when it finally hit me that I wasn't gonna be going back. And I bawled when she left and we hugged and stuff but I felt like I had lost a sister. It was nice having mom and dad there but I needed my new family by my side too. I knew they were praying for me and I'm so grateful for that!  
   The next day they still had no results and I felt a lot better so they said they would release me! I got all excited and I begged Mom and Dad to drive me back to EFY so I could say goodbye to my company. I knew it was gonna be hard but I couldn't leave them knowing the last thing they saw of me was me in tremendous pain. So finally they said okay and we drove back and I spent an hour with my company:) the best hour that I ever had with them we may have just say around and talked but it was so much fun and I love them for that! 
  Well wen time came to leave I completely lost it. I hugged everyone and saved the best two hugs for last my bet friend Annie and Amberleigh. Those two people were the hardest to say goodbye to. Still get a lump in my throat thinking about it. 
  Amberleigh thank you for everything you taught me. I can't even put into words how grateful I am to have met you! Life is mysterious on knowing when we need to met people at a certain time. " By small and simple things are great things brought to pass." Thank you again. Love ya spiritual sis! 
This is saying goodbye.  Good thing you can't see my eyes they were RED! 

Monday, July 15, 2013


  Hey sorry it's been a couple days I haven't been feeling well I've had a virus on top on a headache. Not to fun! 
   Well not quite sure what to write about I haven't figured out all the themes days yet, if you guys have ideas that'd be great! I have some but not much! Nothing much has happened, oh wait that's a lie! 
   Okay so Friday about we get a call from Paul Tanner the artist who is doing my ears, and he said that I'm having surgery on te sixth of August to put magnets onto the post somehow. Then right after surgery and three days after I will be spending two hours laying still getting the moulding done. So this means that on the ninth of August I will be walking out of the hospital with brand new ears!!!!!  AHHH IM SO EXCITED!  Earring shopping at city creek:) I'm denfinatly going to try on a pair of Tiffany's earrings just for fun:) 
  That's about the only major thing happening soon.... So yeah I knew I had to write about that before it happens! So I guess that would be tonight! 
   Well this is probably one of the shortest post I've done. Not informational but fun in my opinion! It is a stroll in my soles and its a upbeat part! So yeah, as you can probably tell I'm tired. Been a long day for me! Ready to hit the bed! 
  So yeah if you guys have any ideas for themed days that would be great I have Tuesday and Thursday maybe Wednesday not sure.. So please share ideas! Thanks for reading, leave any comments or question and ill try to get back to them! Thanks guys! 

Friday, July 12, 2013

Monster University

       Sorry for not posting last night I wasn't feeling too great and I had a busy day!
Yesterday my family and I saw Monsters Unviersity, its a really cute show! even thought the kids in the row behind us were very annoying! I liked the moral of the whole movie! for me it was " No matter the set backs and the hardships you can always reach your goals!"
    I especially liked the part near the end when Mike and James were in the human world and they were at the river where James admits " I know everyone thinks I'm scary (brave), but I'm terrified!" That is so true for me in a lot of ways!
   I've had a ton of surgeries and a lot of other things in my life, and its scary sometimes! Life is scary a lot of the time going to the doctors and the hospital all the time. It's not all fun and games. Sometimes its hard to be brave, sometimes you just have to let go and cry.
  Being brave isn't about not acting scared or pretending to be something your not. It's about knowing when its appropriate not to show your fears and knowing when its okay to just let everything out. Yeah I act brave all the time and people always say that I am. And I will admit that at times I am but I don't always want to be. Apart of being brave is knowing when its okay to show your emotions and knowing when its not.
  The last part to this " I'm terrified"  I don't like to admit it to a lot of people but I am terrified every time I go into surgery or have a procedure. There is always that fear that something might go wrong or something. I hate having that fear that I might not make it, even though it may be a small surgery you never know! I watch a lot of medical shows and people always die in those in simple surgeries! I probably shouldn't watch those shows but they are so good!  Off topic sorry! just a little insight to me I hate going to the doctors and stuff but I love medical shows, its really weird.
  But anyways! I really liked it because even though James is such a big guy he isn't afraid to show that he is actually scared. That is hard for someone to admit. I should know! Its scary being scary. It's confusing but it makes sense if you think about it.
  Disney has always been one of my favorite types of movies they always have such a good moral, they are clean, and they are fun for any age! This movie was especially good for me! The moral was so inspirational for me, its a really good movie and I recommend all of you to see it!!!

  Oh and I am gonna start doing theme days Not sure what day is gonna be what but Ill figure that out soon I have some picked out thanks to my sister Ali!

Well I think that's all for tonight! You know the drill have questions or comments, leave them below and Ill try and get back to you! Thanks for reading this it really means a lot!

Wednesday, July 10, 2013


  As I go under my mind goes fuzzy and my eyes get dry. I blink and blink and they just tell me to close my eyes and take a nap... So like the idiot I am I always listen to them.
  This is what it's like to go under almost every time. Sometimes for major surgeries I fight it because its scary. 
  Waking up is always the hardest for me. That is when the pain just comes back all at once unless they start the pain meds before I wake up. 
  I have had a total of 32 surgeries so far in my short life span and yes there are more to come. I'm so excited for them... Not I don't like driving to the hospitals, my stomach clenches up and the nerves start. 
  I can't exactly put down a timeline just because if how many I have had, it would take forever! But all my surgeries have been on my neck and head except two gallbladder and tailbone. 
   Surgeries take a lot out of me. I just had one on Tuesday in fact. To get post in my head to get ears! 
 I'm tired and everyone has been sick so have I so I gotta go to bed. Thanks guys for reading this! Remember if you have questions feel free to ask! Or comments are welcome too!

Tuesday, July 9, 2013

The Stares, The talks behind backs, and The Making fun of.

The last post just wasn't a good one. It was a stupid post!
So this one is a new one that one of my friends have inspired! They know who they are :)  
   This post is for those who stare, talk behind anyone back, or make fun of people who act or look different. STOP IT! It'rs rude, stupid and ugh! 
It bugs me when people stare at me, I honestly would rather have them come up and ask me rather then just to have them stand or sit there and gawk at me. Some times I approach the person because I'm not a fan of stares, Not only is it uncomfortable, but its down right rude! I'm sorry if this post makes people uncomfortable but it needs to be said! 
   Yeah I know I get talked about behind people's back, yeah it annoys me but not that much. I can just talk them and set it straight. Not that bad for me at least haha.... I know I have embarrassed a couple people and I'm sorry if I have. I just would rather that the facts be out than the stories. 
  People seem to think that just because someone looks different that makes them a completely different person. I met one person that made me so mad! She basically said in front of a class that babies shouldn't be born if they aren't going to be "normal". That upset me so much that I nearly started crying in the class, which was stupid but I couldn't help it! How can people be so dense?! Nobody is normal, everyone is different! I mean yeah most people don't have TCS but still no need to be stupid and say that kind of things ESPECIALLY when I am in the room! 
   The making fun of.... I could go on and on about that! I know I cant but still you guys need to realize that the jokes or the things you say that are rude or mean. They HURT! Words speak louder than any other form of communication. When I was little that was a big problem for me and I would just ignore it. But it still hurt a lot, and even now some people are stupid and still try to make fun of me but I don't let it bother me any more. I mean yeah it'll always in a way affect me but it wont effect me as bad if I don't let it! I know that a lot of kids get made fun of and its stupid. 
   I shouldn't rant on about it but I just hate that kind of thing when people are so stupid that they don't think before they speak. 
   People with Treacher Collins Syndrome are normal human beings just like you guys. The only difference is that we have a lot of health problems.  We like hanging out with friends, playing sports, and being kids and adults!  I love being a teenager! I have friends which are my life, I know I've said that a lot but its true! I am starting hair school so I can be more sociable with the world and have fun playing with hair all day! I'm so excited to start!
   This post may not be as good as the first one but I just felt like something needed to be said, just because of things that have happened with me in my life so far. I know it's not just Treacher Collins people who have had it happen to them, this is for everyone who has had this happen to them! Something needed to be said, I'm sorry if this offends anyone but it hurts when you guys do these things! I know a lot of it is just jokes and stuff but please think before you act. I need to work on it too I'll admit that. 
  If you guys have any questions on anything feel free to ask! Thanks for reading!

Monday, July 8, 2013

About me (mostly)

  So yes I'm a teenager and I have Treacher Collins Syndrome. I've had a total if 32 surgeries so far, there are more to come! Yippee... 
  Life has been good to me though, I've had a lot of cool experiences. My friends are my life just like any other teenager, I love reading and playing tennis. And I am a mormon, love being one too:) I try and do all everything I can to live a normal life. Though its hard sometimes with all of my health problems, but I do my best! 
  Life dose suck sometimes, just because of being a teenager and all the surgeries just take a lot out of me. And like anyone else I get tired of them. 
  About two years ago I went out to Ohio to do a series of surgeries that were suppose to help. They did in some ways but they also hurt me in a lot of ways. I had a total of ten surgeries out there and after the last one which was a cosmetic one. I got a infection. 
  Last year I fought the infection and beat it but I have been suffering with pain ever since then. It's been a pain, and It's been very draining for me in a lot of ways. 
  Ive been through a lot but I can't let it get to me all the time. I just have to keep moving forward. Yeah it's hard but I have no choice:)  " I travel the road less traveled sure it will have bumps along the way, but hey that's life!" I literally live on this quote! It's taught me so much! I can't think of anything else... Ill write more about my surgeries later I just thought you guys needed to get a better picture of me. I need to get this blog all set up sorry its so plain! If you have any questions feel free to ask! 

Sunday, July 7, 2013

The analogy of play dough

At EFY ( Especially For Youth)
Our group did an analogy challenge I guess you could say. 
Each one of us had to come up with an analogy and mine was a play dough one... 
Now imagine when you were born you are handed a piece of spiritual play dough. During your life you mould it though the winds and the sun are trying to dry it out these represent the trials that we will face during our life time. 
We have to keep working on it no matter what, until the last day when you can present the shape or masterpiece that you have moulded to Christ, only he can judge what you have worked on your whole life. He will be the one to say where you go in the next life! 
I don't know it's just something that I liked a lot! And I just thought I should share it. Because even though I have a ton of stuff that I have to work through I still have to keep moulding my masterpiece. I can't stop. Even though there are days when I want to be done. I have to work through the trials that He has given me when I need help then I have my friends and family  to help me out when I need it. 
I just loved this analogy so much it's helped me understand a lot of stuff. I'm so grateful for EFY  it's the best it taught me a ton of things! All the people have changed my life and I'm so grateful for them! I hope they know that! 
¡Corazones de hombres para siempre!


Saturday, July 6, 2013

What is TCS?

   TCS stand for Treacher Collins Syndrome. 
   It's a genetic disorder when some of the bone in the face don't form. Like for instance cheek bones, lower jaw joints, or ears. ( that's the basics for me)
The way I've heard it explained is that in the womb the body actually fight against it self because it thinks that it already has the bone to make the cheek bones an other stuff. So in the end they don't get made at all. 
    There are simple to severe cases. The simple ones don't need hardly any fixing but the more severe cases get the most surgeries and everything. My case is severe but not too severe. One of the most severe cases is in Florida and her name is Julia I think. She is amazing! 
    In my case I have to have a trach and a g-tube which are a breathing tube that helps me breath and a feeding tube which I hardly don't use anymore but it helps me get all the nutrition that I need when I need it. And it's helpful for when I don't want to take medicine by mouth!          Yes I have had many surgeries to try and help but sometimes they don't help. Some do help but some don't. There is always that risk with any surgery. That is the frustrating part for me. I've had a total of 32 surgeries so at but there are more to come. 
   I'm strong because I have no choice. If I don't then I believe I would just crumble. I have days when I just want to be done but I get over those with the help of my friends and family.  Friends are the most important thing to me. I hope they know that! Well I think that's it for this post if you have any questions feel free to ask!

Friday, July 5, 2013

The first post is always the lamest but...

   Well I didn't have anything better to do so why not make a blog? 
This blog is for the sole purpose of telling my story of Treacher Collins Syndrome and what it's like to live on a day to day bases with the daily challenges. 
   I will regularly do post not sure how often l. But I will an ill catch up on stuff later. But for now just wanted to welcome you and say thanks for helping me get this started! 
Lets spread the word on TCS!