Term Begins

 

My first ever term with the UDDC begins next month and cannot fathom how much my life is gonna be different once I get started up with things. I know that my responsibilities have yet to be decided or even assigned to me, but I have so many unanswered questions to ask when the time comes. I am excited about this new chapter of becoming a more self determined advocate and leader in the disability community---which sometimes I genuinely feel like I've not done my fair share of things to make them happen. I cannot wait for the opportunity of being able to make new friendships with the other members and hopefully learning so many more skills from them throughout this process. (FYI: This disability council are kind of the watch dogs over so many things and cannot wait to be one of them or unless I end up being a bunny instead!! LOL)

I have definitely blogged about this one too many times, but I know my experiences of simple growth & maturity will guide me into where I need to be headed into next. I am not certain if I am gonna do much of anything perfectly which is not gonna be the case whatsoever, I feel overwhelmed with gratitude to have a opportunity of a lifetime with so many amazing individuals. 

LONG STORY SHORT---There are so many more times for me to fail and try again throughout this new experience of my life, but I cannot wait to share them with such extraordinary and talented people whose influences are gonna touch my heart for the better. I may not blog nearly as much about things, because it could not be worth sharing with people and yet I know there will be unforgettable memories to make with such awesome friends!!! 

Life with this COVID stuff has not been quite the same for me and realizing once my duties with a brand new disability council kick off in a few weeks...I cannot imagine what the feelings of excitement and thrill that are going to come over me along this spectacular journey. I may be sounding a little bit some what repetitive about all of this craziness here, but I know there are only moments to come with smiles or laughing until my heart is tired!!! 

Free Write

I've had such a complete whirlwind of mixed emotions from this past week and little do I have any idea about what I'm getting myself into. It has been a little bit crazy spending time online with various people and trying to communicate to each other, what needs to be taken care of so that nobody feels like they are being left out in the dust. I know there are many amazing people behind me who will continue keeping a smile on my face and making certain that I can set an example for others, long after I leave from both of my council duties are finished. 

With my new leadership roles that I'll take on this year, I am slightly concerned about not trying to take any of the feedback from anyone to heart. I know my sensitive side will be easily noticed from people & trying to make certain that I can keep it in tact may be a little difficult. I have certainly felt overwhelmed by all of the adaptions that I will need to make in order to stay professional--but not let any of the littlest reminders open up any wounds. Life has been such an emotional roller coaster for me this year alone and if there is anything I can focus on--is just simply balance out my typical fun side with being a good youth member of the Utah Statewide Independent Living Council. 

Shattered Heart

After being emotionally drained two years ago upon returning back home--- I can only hope with all of my heart that this does not end up revisited again!!! Originally I had looked forward to being there and away from the damage life had been putting me through--but I do think this next time around is gonna turn out a lot better!!!!

Moderator

Earlier Today-- I didn't want to necessarily get my hopes up on becoming the new chair person for my youth leadership committee, but the person who has taken the spot is gonna do an extraordinary job at presiding over stuff and I could not be more than excited for them to take on this new role!! I am grateful for the experiences that lie ahead of me this year and working alongside the best of the best people in our state. 

New Secretary 

I'm certainly more than relieved to have a position like this one, and keeping accurate notes on tab if I can even think about what has to be recorded down-but also trying my hardest to not get behind with stuff either. I have little to no idea about what could happen next for me down this road, but I can just give it my one hundred and ten percent regardless of what countless mistakes I will keep making thru out the coming year. Please stay tuned for more stories and updates to come!!! 

Overwhelmed (Honest Truth)

I have definitely never felt more overwhelmed in my life with trying to think about the next phases of my life that are coming up. I know this is all completely new for me and there is only so much for me to keep learning along the way-- but it is a little bit intimidating because everyone that I will be doing stuff with have so much more experience than I do in various areas. All I can do is make an effort w/ trying to make certain that I am not the kind of person who neglects their responsibilities to let all of my new peeps have their voices heard too. 

I am grateful for the many amazing people who are gonna support me along this new journey, but I cannot imagine what kinds of new things I will have to learn from them (let alone need to be firmly considerate about too. I truly hope to keep up with a continuation of my platform with self advocacy and getting a chance to expand it in ways that I never would have imagined possible. It is certainly a lot of tough stuff to discuss as well as get out there in this world, but someone has to make an effort with knowing that they are not gonna let any of the obstacles get in their way of being successful in this world. 

Sparkled Out

Utah Developmental Disabilities Council (First Virtual Meeting)

I've genuinely never wanted to keep away from this in any blog post and quite frankly with the new opportunities that I'll have in front of me...It will only give me more chances to share my ambitious and bubbly personality with others. I am grateful for this amazing experience of a lifetime and can't wait to learn as many things as I can possible about the disability world. It is definitely going to be a new adventure for me to take on as I try to give my input on things and what should be happening in the next several months ahead...which I know is either gonna strengthen me or wear me down. I am confident things will turn out a lot more fun than I would have least expected them to, but I know it's just a matter of giving it my best shot before anything becomes official.

Youth Leadership Committee (Elections)

TOMORROW MORNING---I have another virtual call with this committee to elect a new chair and there are countless thoughts running inside of my head. I am not even sure if someone like me could emotionally handle the load that would be on their shoulders or if I am even the kind of advocate or candidate that my group would like to be take over things?! All of this new stuff has been surreal in more ways than one and quite swamped with knowing how I could take on another task--which if I must admit could either lead me into a direction I need to be in or who knows?? Maybe I have a lot more that I need to keep learning from such incredible people who go above and beyond in making dreams turn themselves into a reality.

Post Virtual NINJA Con 2020 (Mentor Spotlight)

One of the most heartfelt moments for me was getting to speak for a minute about what leadership means to me on a personal level. It was legitimately not something I had practiced being emotional over by any means whatsoever--but somehow prior to me talking about the subject: (I'd mentioned that I am the crier of the group just so everybody would know that & then preceded to read off my paper what leadership meant to me.) It was such an emotional moment for me to share what was in my heart with everybody who participated on the conference with us--but also realizing I may not ever know when my next chance would be to mentor a NINJA Conference again!!! Only time will tell with that legitimate part of my life and how things are going to lie down with it--but I'm more than willing to lend a helping hand in anyway that I can possible. 

Usilc Newbie

It's almost surreal of me to think about the upcoming opportunities that lie in my path and not even sure what could happen next down the road. I have little to no idea about what I am getting myself into... but I am thrilled about the opportunity of a lifetime to work alongside with such phenomenal, hard-working, genuine, self less people ever!!! There is only so much for me to learn along this new journey to get out of my comfort zone and give those with disabilities a voice, that needs to be heard more often than anyone else thinks it should not. I am grateful for this lifetime opportunity of being able to stretch myself in ways that I didn't ever think were possible and doing it with my closest and dearest friends, is nothing short of a dream come true!!!

Spotlight Moment: (Earlier Today)

It was such an unforgettable moment for me to not only be recognized in a short period---but hearing the qualities about myself in front of people who have touched my life for the better, is just absolutely indescribable!!! I truly love being a part of such an amazing non profit organization whose given me a platform to expand my horizons on about self advocacy along with other things in between. I know it is such a new experience for me to do stuff like this, but if this my lifetime opportunity to take this chance on--I would much rather not miss out on it. I legitimately almost had tears in my eyes while sitting there trying to keep myself together and knowing how incredibly far I've come from where I was before.

Fun Moments Ahead:

Not sure what these will look like yet--but I am hopeful there will be a lot of laughs and smiles to share with my new peeps in the next little awhile. I will most definitely keep myself as professional as I can possible without trying too hard to draw attention to others... If you know what I mean?! It's most certainly gonna be a very legitimate fun time with such extraordinary people and getting lots of chances to know them better is truly going to be an experience I will not soon forget. I certainly loved being able to bring smiles to the faces of my friends who participate on the call this morning and just simply enjoyed getting to learn how running a council works. One of my favorite moments from this morning was when I noticed a friend playing with their hair and putting it on their face--as if it was a mustache, but somehow I wanted to give it a mini shout out and said: (I am not even sure what it is I said exactly after telling this person how great their temporary mustache looked & then saying that it looked so cute!!! Talk about a true statement right there and then the next thing I knew my friend was laughing pretty hard for a second which if you ask me is a success!!! 

Ground Zero

(Old Story - Summer 2012)

EIGHT YEARS AGO----I visited the big apple with my mom, older sister and her husband which I will admit ended up being a very unforgettable trip for me. (Minus the fact we tagged along with them because they were going to be dancing in a ballroom competition at the hotel we were staying at which was so legitimately nice if you ask me!!!) I really liked getting to walk around the sites that people have either seen on television before or has gotten toured millions of times. I truly liked walking around the 911 Memorial and Museum-- looking into the clear glass cases with pieces of rubble that was salvaged up from that unfathomable/tragic day. I remember looking at all of those endless names of victims who put their lives on the line, so that I could still be here today. I couldn't even believe this happened to a country that does not see violence or let alone any form of terrorism to pull us apart. I know this is the nineteenth anniversary of a day that nobody wanted to see happen or let alone watch unfold on their television screens, but life has been able to continue forward even during the hardest of times. None of these individuals knew what was gonna happen the next day and then only come to find 

This unthinkable act of terrorism on our country was like anything I'd ever seen before. It was such a horrific time for me as a young person to think--"Why would this ever happen? How did so many thousands of peoples lives have to be taken away for no reason whatsoever?! Why did those airplanes have to be hijacked by terrorists only to find out people's lives would be gone in an instant and all because they do not live in a free country?!!?!! Was this a complete accident or just something that would give us a reminder about how to treat other people?! Maybe it didn't click inside of my head like it does right now, but I am grateful for those who made it possible for us to enjoy our freedoms today. Let us never forget this September day of the lives who were lost in circumstances that nobody should have ever experienced and yet here we are--- remembering each and every person who did whatever they could to save themselves as well as those they did not know were going to not make it back to their families. Never take life for granted and while we are living in this unprecedented time in 2020, let us not ever loose sight of the fact we need to hold our loved ones a little tighter & snuggle them a little more often than we usually ever would. Life is gonna continue throwing endless struggles in and no matter the circumstances we ever find ourselves up against--Plz keep in mind that as long as we remember what is most important everyday, We can make it just through about whatever gets put into our path. 

Personal Escape

This young adult novel is about a teenage girl named Kathryn who is constantly tired of her family chatting non stop about her older brother Brett as if he were perfect. Kathryn also has got another struggle on her hands with tutoring the football star Jason West, who unbeknownst or even to make things a little worse, He is also a Mormon. And she is tutoring him for their Honors English class-- which if it were me I'd be a little nervous let alone not sure what to do!!! She decides to give it a chance after all and whenever he brings up the subject of religious talk-- Kathryn's parents let alone her family is not at all too thrilled about it.) Without going into much more details about this, She is handed this secret journal filled with personal letters written to her from the older brother that she never got to know... but comes to learn so much from reading about his journey with chemotherapy treatments. I may not ever know what it must have been felt like to read through those letters and not having any idea with how much life would have easily turned upside down. 

Safe Haven (Tetonia, Idaho)

Whenever I've experienced anything hard in my life--(minus this year alone) I always wanted to be able to have an escape to a place where I could get access into and enjoy the beauties of nature. I truly loved being able to spend quality time at my dad's five generation family cabin located in the small town of Teton County. These past two years, I have legitimately felt so much peace in my heart and being reminded about the simplicity of life and if you have not seen the unbelievable view of the Tetons and if you ask me--they are an absolute sight to see in person!!! I really wish this special place was a lot closer to home and not so far away--but at the same time, I know it would not be the same if it was here in Utah as opposed to being in Idaho. I cannot wait to return back there next year and when there is no more unexpected craziness going on in the world & being able to think about the legacy my grandparents left behind for us. 

Validated

LAST WEEK--- I participated on a miniature Zoom call with two of my favorite people and little did I know one of them would ask me about my disability. It was such an eye opening moment for me to understand that sharing my information with people is only gonna help them know who I am. I didn't know how else to approach this question without a need to respond and kind of vaguely explain what my so called life is. 

For those of you who have never known this about me, I have a genetic disorder called Fragile X Syndrome and it is basically where those X chromosomes do not work like they are supposed to... which if you ask me is kinda annoying-- but you get the idea?!! (There is more to tell about this but here is just a preview--but my mom also has it and my twin sister deals with seizures on a regular basis and I am kind of like her roommate if that makes any sense?? She and I can either one day be like best friends or each other's worst enemy... which for most siblings it is a fairly common thing that we deal with from time to time.) It is also known to be a lot worse in males than females--who like myself do not struggle with reading and writing or let alone much of anything that relates back to academics. It is also such a hardship for me in trying to learn abstract things and not knowing how to process the idea of what is being said-- but I can honestly admit that it does turn into something I wish never existed. 

With being an extrovert in this world, I have certainly gotten my fair share of not being appropriate in social environments. I may never understand in a million years why it is that I am not able to control this kind of behavior and learn that there is extra room for improvement. As I have struggled with on and off experiences with trying to keep my mouth quiet or feel an urge to get my opinion across in an brutally honest way. 

One of the hardest things about my disorder is that I may not know if there will ever be a legitimate or permanent cure for something like this. I am not necessarily gonna hope for that to come up with in the next few years or whatever-- but I do know that it will never define me!!! Without going into much more detail about this on a personal level-- I am grateful for the many things that I can do and not have others tell me what it is I am more capable of being able to take on. I will continue making endless mistakes in situations that never should happen and not having a clear understanding of how someone else perceives me to not take what they tell me close to heart. They might not have known in that moment of them bringing tears to my eyes and leaving it out there for me to take care of and not knowing where to turn afterwards. I've continued to have my NINJA friends reach out and remind me that if I ever feel a need to reach out to them as well as have someone to talk to--- I can simply just count on them to give me heartfelt advice whenever it is necessary. I am grateful for their support to me throughout this unprecedented year more than anything in the world and without them to catch up with on a occasional basis-- My so called life would not be what it is right now. I've even gotten invited to participate on another IL Centers online Zoom activities and what an amazing experience it has been for me to feel included despite the fact-- I am not one of their youth consumers. It has given me a second reason to not only participate on more virtual hangouts with friends, but to learn a lot of new things from them every single week!!!

(End of Part One)