Friday, September 15, 2017

Parents, listen up.


 I decided to write this post especially for the parents. You guys do an amazing job at raising your children. I have nieces and nephews, I don't know the whole raising thing but I know to some extent.  This post isn't to criticize your teaching methods at all just another thing to think about as your child grows up.
  All through grade school I had to deal with the pointing, stares, whispers, bullies and a lot more. My class always had my back because my mom would go in on the first day and teach them about me so I wouldn't have to deal with people bulling me in my own classroom. But that doesn't mean it didn't happen, other classes who didn't know about me whispered, pointed, laughed, made fun of me right in front of my face not realizing I could hear just fine. My class mates stood up for me but some times I'd tell my teacher or another adult. But that didn't necessarily stop it. Sometimes it made it worse because the kid or kids would be mad. It didn't happen all the time but sometimes it did.
   So this is my two cents for you parents raising your children, teach them that it's okay to not look "Normal", teach them that not every one is the same, that nobody talks the same, nobody laughs the same, and that we all bleed the same color red. Teach them that if they see a child being bullied you stop it. That if someone is feeling all alone you include them, teach them to talk to one new person daily so they start to see more than their inner circle of friends,  teach them to open their friend circle to everyone in middle school my friends and I had a table that we invited people to sit at everyday, it opened our friend circle and by the end of the year we had about five tables smashed together full of our new friends, teach them to not laugh, point, stare at someone just because they look different. I mean honestly nobody is normal, one of my favorite quotes is from the movie "Incredibles" it goes like " Normal? What do you know about normal? What does anyone in this family know about normal? We act normal, Mom; I want to be Normal! The only Normal one is Jack-Jack and he's not even toilet-trained!" Why do I love this so much? Because I guarantee you every person who isn't "Normal" feels like this at some point in their lives.
  Teach your child to reach out and accept people and if they have a question just ask the person. I promise we've heard it all before. Don't try and stop your child in public if they have a question. They are trying to understand. Let them ask. So they understand that it's okay to be different.  And please teach them love for everyone. Teach them to have an open heart and mind when they meet someone. Please I ask you so that kids like me and other children don't feel like they don't matter, or that their ugly, or stupid, or whatever kids come up with. I promise you to have a child who feels like their the only one in the world to feel left out or depressed is the most horrible thing. How do I know? I've been there and I never want any other child to feel that way.

  Please think about this as you are raising your child. You are doing an amazing job, keep up the good work. Be proud of your children because they are something to be proud of. Never stop loving them even the days when you could strangle them. Most children learn by example so I invite you to do all the things I have just stated above, not just for people who look different but for everyone. If yo have any questions feel free to leave them below and I'll get to them. Thank you for reading.
  Oh for those who don't know I have an article out that's getting pretty famous here's the link to the article.
and heres the link to the video
I invite you to share it so I can get my message out.  Thank you once again!


Friday, July 7, 2017

Bullying... not cool guys.

Everyone has been asking me about bullying since the previews for Wonder have come out. 
Honestly I was seriously never bullied that I can remember. 
In elementary school I had nurses and friends who protected me. I can never thank them enough for keeping me oblivious to bullying because I know for a fact it would have affected me in such a hard way. 
Another thing that helped was the first day of school I would always skip and my mom would go in and meet my class and explain to them who I was and what Treacher Collins Syndrome was. She would also explain that I was normal as everyone else I had lots of family and I loved to do anything that any other kid would. 
So When I had my first day it was like everyone already knew me. Made it a lot easier to make friends. 
However when I moved to Utah in 5th grade (my only hard grade socially) it became so much harder. Utah I love it but people can be so exclusive and rude sometimes. And me being in fifth grade and a normal "tween" wanted to handle school on my own. My mom still came and explain which did help but I was on my own I didn't have a nurse or friends to protect me here. At first they'd tease me and harass me I talk to my teacher but that'd never help. I remember this one time I was walking the track just minding my own business when one of my first friends in fifth grade different class just came up and walked with me and we talked. Became a daily routine so grateful for her and her doing that. Honestly it took about 3 months for anyone in my own class to really talk to me. But once they did I started to feel included and not so alone sure some people were still jerks but I ignored them. 
After fifth grade school life wasn't so hard socially. (Educationally is a different story.) 
I learned to ignore the jerks, talk to everyone so they'd feel included, and answer questions when asked. I adapted to my surroundings sometimes I did become sassy but I can't control that just who I am. I honestly had the best time for the rest of my school career.
So if you are getting bullied stand up to them and ask them why? Ask them if they have any questions. I find half the people who stare or are jerks are afraid to ask the question they've been holding on to for so long. 
If you are the bully then stop and apologize. No need to be one anymore. 
Don't be exclusive talk to everyone and anyone. Makes sure no one feels alone. My general rule of thumb through out middle school and high school was to always invite everyone to your table or your hang out spot to never exclude. 
Utah I feel you need this the most I love you I do so so much. But be including do not close the circle of friends because you're comfortable. Make it wide and inviting so no one has to fight their way in to not feel lonely. 
Be uncomfortable because only then will you become comfortable. 
If you're the one feeling lonely then you fight to feel included fight the barriers of the circle heck get in the middle and just talk to everyone. Just do it I promise you; you will be included even if you're just listening. People will include you. 

Monday, May 1, 2017

Medical Life Update

    So as I promised a while back here is the medical update post. Ive been putting it off because I had more medical stuff come up and I wanted to get that all sorted out before I wrote about it.
   Last summer my parents and I did a medical Blitz the goal was to find a solution for my chronic pain and a way to help me chew. We found but not without a lot of doctors throwing their hands up, MRIS, CTS, Pictures, doctor visits, phone calls, and so much more. I'll write about the chronic pain first..
   Well we were on the Blitz in Baltimore ( all the doctors we saw were on the east side of the country) We saw a Dr. Dellon I think that's how you spell it. He is a nerve guy who I saw a couple years back in Las Vegas he travels between both states. Anyways we decided to do a follow up with him in Baltimore, right away he found where the source of my pain was coming from. It was quite the miracle because all the previous doctors I saw for this nerve pain have always thought it was in a different area. So he gave us the option to do a surgery to get rid of the pain.  I couldn't believe it we spent less than a hour in his office and he told me he could help me. The only problem was he didn't take our insurance, so I decided to think about it for a while because I knew it would cost a butt load of money that we didn't have. Fast forward about two months later approximately I had decided that I needed to do this surgery to get permanent relief from this pain ( I had another option to control it and I'll write about that next.) In order to get the money to do the surgery that I so desperately needed my dad decided to set up a go fund me page. Oh man I still get emotional about it within three days we raised the money. I couldn't believe it people from all over the world were donating people I had never even met! If you're reading this and you donated I thank you from the bottom of my heart this surgery would not have been possible without your generosity! We set the surgery date and we went and had it recovery was good not too bad I did have rough days but nothing I couldn't handle.
   So now comes the exciting part.. ( not really) when we were on the blitz we also saw a doctor that I've also seen in the past. Dr Matthews, I'm pretty sure Ive written about him in the pas but in case I haven't he is a world renowned craniofaical surgeon and an amazing guy.  This is where the other solution for my pain problem came from. So this doctor has a device called a Mi health ( ) that I've fallen in love with I'm not sure on the whole science behind it but I put the link in so if you're interested you can look at it.  Dr. Matthews also proposed a plan to help my jaw so I could have the ability to chew because at that moment I was basically on an all soft food diet. Not too fun when you're craving steak I might add.  His plan was to take two of my rib bones and over lay them to my jaw to create a ramus bone ( the long part of the jaw) and to help it heal we wired my jaw shut. Oh I hated that part! I decided to go ahead with this surgery and we set the date for December 22nd not one of the smartest decisions I've ever made I might add. To be in the hospital on Christmas is not the funnest.  I was in the hospital for about a week recovering had a rough time with the recovery. I came home to the Ronald McDonald House in Charlotte. And the next morning my worst nightmare happened I got an infection on the left side of my jaw. We called the doctor and he came over to look at it, he had us meet him at his office so he could get a sample. It came to as puss so we went straight back to the hospital that night the next morning his partner Dr. Frank went in and cleaned it out.  I ended up staying another week trying to fight the infection and I think that was the hardest part for me. I was so weak until they found the right antibiotic I ended up getting a PICC line again 3rd time is the charm. But once they found the correct antibiotic I got tons better and was able to get out of the hospital. Just so you know this is a very condense version of North Carolina. I'll do another post on all the details and the emotional roller coaster.  So after having my mouth wired shut for a total of 8 weeks about and fighting the infection the whole time I was able to come home and start my life again. It was so great I can't even tell you what it's like to come home after an experience like that.
   But at work less than 2 months of coming home i managed to fracture the left side of my jaw which is the side that had the infection, so now I am going back to North Carolina next weekend and hopefully will be there only a week to do another bone graft and wire me shut again most likely. I'll come home wired shut and get unwired here in Salt Lake barring any complications.
  I know this isn't one of my best post but I figured I'd give you the run down on what's been happening medically. I'll do another post to update on the emotional roller coaster I promise.
If anybody has any feel free to ask!!

Wednesday, April 12, 2017

It Ain't All Sunshine And Butterflies

      So this post is about to get real guys.... Like real real the depressing then happy real if you get what I mean....

      Life honestly guys it sucks sometimes, we all know this. As far as I'm concerned NOBODY'S life is perfect! We all have our bull crap that we go through! And this is mine ( this is where it gets real guys)

    See life as a person with Treacher Collins Syndrome (TCS as I often refer to it as) is crap sometime, (I can't speak for anyone else when I write this is my own thinking and experiences.) endless doctors appointment, 100+ hours of surgeries, probably years of hospital stays, millions of dollars put into medical stuff not just surgeries, dissapointments, depression, and the stares. I haven't logged all my hours in the OR yet but I'm sure if I did I'd be well over my age. Spending hours at the doctors and hospitals you learn really quick what to take and what not to take with you, the money spend on medical stuff is astounding and that's what insurance pays. But flights for surgeries, hospital bills, gas bills, bills, bills, and more bills! t adds up to a lot! 
    The emotional side is a completely different story, the bad news that a doctor can't help you can destroy a person you build up so much hope and sometimes they take it down in a single sentence. Having a surgery not work for one reason or another is devastating the hours spent prepping for it and having it not work out in the long run is so freaking frustrating. I'll admit depression it hits hard, oh there are dark dark dark days. There are days when I do go to the store or something and I'm usually pretty good about ignoring the stares or smiling but if I have had a bad day or I'm just sick of it I do snap. It doesn't happen very often but it dose. Its annoying! Imagine going into Target and walking around and people are just gapping, honestly I have wanted to wear a mirror so they can see how ridicules they look.  But then I figure ehh I'm working it so let them stare. ( this is why I never leave the house in sweats or pjs.) 
    But one thing I've learned through out every single thing I've gone through is that its okay. its okay to go through crap, its okay to have people stare, its okay to feel depressed. Because the thing is YOU ARE ALLOWED TO FEEL WHATEVER YOU WANT TO FEEL. BUT IT'S WHAT YOU DO WITH THAT FEELING THAT WILL AFFECT YOU.  My therapist told me that once and it has stuck like glue to me. I love it!  So I have no clue if this will help anyone. If it dose great if not it helped me so great! 
   I know its been a while since I've written but thats because I've been going through a lot, I'll write another post on that soon. It'll be a long one.