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If my life were a movie, the name would be. . . (Journal Entry)

"My So Called Life." I'd probably want to share about my life's experiences living with fragile X and the many lessons I've needed to take away. I'd also include the ups and downs that have leaded me to where I am now. I think it would be important to help people in our community better understand who I am & how amazingly far I have come through everything life has thrown at me. I know it would be slightly awkward at times during this film for everyone to get an idea of what's it is like to be a person with an uncommon---genetic learning disorder and the ways I've been able to overcome it. My life is not perfect by any means whatsoever, but I have learned a lot with doing all I can to be a better person, self advocate, leader as well as mentor not only in our society- but within the disability community here in Utah. I may never at times--like what my learning disability is, but it has allowed me opportunities to make some of the absolute if not sweetest friendships with people who even though are different have so much to offer. I may never understand why I ended up stuck with something like this, but it has given me much more to keep learning and growing from everyday. I have definitely needed to put into perspective why things in life are not what we asked for but had to come to earth to be able to help others grow. 

(To Be Continued)

Free Write

Over the last couple of weeks, I have been journaling about random topics that have gotten my mind off things. They have given me a lot of unique perspectives on stuff and trying to do my best in making this somewhat of a high priority. I used to journal almost all the time until it was getting to be harder to keep my notebooks where they needed to be and they got torn apart easy. LONG STORY SHORT--I have just recently found myself getting back into this again and have quite enjoyed it more than I would have ever expected to. 

I am grateful for the many opportunities that I've taken to do much needed self care. I usually would think about this and never want to do much about it unless it was necessary in a time of anxiety getting into my path of where I need to be. I am definitely feeling so much comfort and peace from my Savior each day that passes on when I know things have felt more overwhelming than they need to be. I have been very much strengthened as I walk along this journey of life that has not always looked perfect-- but has just simply given me a chance to learn into the person I need to become. 

Some of these topics are:

My biggest fear that no one knows about is...

I wish I could invent...

If I could achieve only one thing in my whole life, that would be...

As you can see, this has allowed me so much unconditional love for myself and the advocate I want to be for others in the disability community. I may never understand a lot of what I am told from people-- but at the same time it has not always been easy to sink in either. I am definitely seeing a much brighter side of life than I have been able to see for a while and now I can only hope to feel reassured that all of this will be over soon. I have continued to remind myself that I can do all things with Christ and I know he will not ever leave me in a position that no one should see themselves up against. He has brought me a sense of confidence that I am stronger than I think and can overcome any trial that life throws into my path. He has guided me into the direction of my self advocacy that I need to be on and remember who I am in his eyes, regardless of what other people may think. 

He has allowed me to grow into the person I need to become and never lose sight of what his plan is for my life. I am grateful to him for answering my prayers and knowing that he will stick with me on every step of this journey. He knows that I am not perfect and have to allow him to walk beside me on what I know is going to benefit me more than I could ever imagine. 

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ONE WEEK AGO---I participated along with my twin sister and best friends in our seventh annual "Night To Shine" sponsored by the Tim Tebow Foundation. It was truly an incredible experience for all of us to be treated like royalty and have a prom night we'll cherish forever. I am grateful to have been a part of it once again this year and getting to celebrate who I am with so many other individuals with disabilities--was incredible. 

I was able to connect with some other friends whose faces I'd not seen in nearly forever and it was special to be able to catch up for a little bit. I really loved being able to have an event to keep my mind off things that have been going on in my life recently and just getting reminded of how important I am in this world, touched my heart. All of us got checked into the event after 5pm and immediately were assigned buddies who would give us our corsages before heading off to make our entrance on the red carpet. 

Shortly after that, we entered into the event with a scrumptious dinner and a beautifully decorated space with all the sparkle you could ever imagine!!! We quietly sat down to have our meal and then quickly did as many of the activities we wanted to participate in which included: (Cartoon Drawings of us in less than four minutes, limo ride, dancing the night away, laughing till our hearts were tired, drank sparkling cider on the way home, stay hydrated with water, enjoyed some treats as well.) 

Everyone was crowned a king or queen of the prom which if you ask me, is truly the greatest part of the event prior to getting a heartfelt message from Tim Tebow and his lovely wife Demi. It was definitely an amazing experience to feel the love of my Savior, Jesus Christ and know that everyday of my life, that he does see me as a queen. I am grateful for his unconditional love to me during the past couple of days and throughout my life on a regular basis. He is the one who has given me so much peace when I have needed it the most and has never left me alone when I needed to communicate with them. I am so grateful for his example of what it means to follow him and be one of his disciples that wants to strive as hard as they can to love others like he does. 

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Weekend Stories

Night To Shine 2023 - The Genesis Project (Ogden, Utah)

I'm incredibly excited for this long awaited prom night event to take place and celebrate who individuals with special needs are in God's image every single day. It is truly an incredible experience to be all dressed up in formal attire and dance the night away with thousands of honored guests like us from across the country. This will be my seventh prom with hosted by the Tim Tebow Foundation which sponsors Night To Shine every single year and they are an organization who continuously gives back to so many people who are in need & want help get back on their feet no matter what circumstances they are faced up against in life everyday. (Updates To Come)

USILC Meeting (Late February)

Serving on USILC as a council member has been at times such an incredible experience to adapt and learn more about how I can better improve the quality of life for individuals with disabilities in our state. I'll be honest with you here, it has felt like I will never know as much as most individuals that reside in the disability community. I genuinely will admit that I may not have as much experience like others do having served for years on various councils. This continues to be the biggest leap of faith I have ever taken as a self advocate and still hope to be the kind of disability leader, self advocate, mentor, colleague and friend that people I work closely with deserve. I may have made a fair share of mistakes with not handling situations as properly as I should have and can only hope to go forward without any stress or anxiety getting itself in the way. I have admitted too many times before that I am not perfect or even close to it. There is nothing I am more emotional about than when it comes to feeling like an outsider, which happens more often than it should. Minus how overwhelming this is for me, I am grateful to know there are so many supporters right in my corner who want to cheer me on every step of the way. (Stay tuned for more!!)

Mission Accomplished (Mini Version)

Over the past two days, I reached out to my legislators in regards to issues that the disability community needs addressed. I may not have heard from all of them at the same time or anything like that--but I am grateful to have gotten a chance to email these important people and let them know what funding we all need to continue on with our programs in the future. I did struggle at times today and over the past two days with trying to realize how simplistic and approachable this is when I am not overthinking about--literally everything on my plate. Did I legitimately somehow forget to mention it was over 16 legislators??? Yes, You did hear that right folks!!! Sixteen legislators I reached out to over two days about our ongoing funding that we need to keep our IL programs running smoothly at all costs. We are also genuinely asking to get funding so we can have an accessibility elevator put into our building so it is a lot easier for consumers who are in wheelchairs can easily get inside the center without any problems. But who knows what will be happening for us?? Only time will tell at this point :) 

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New Updates

NEXT WEEK---I will be making three trips to the Capitol building in Salt Lake with some of my friends to attend a legislative training put on by one of the governor appointed entities I serve on. I am grateful for the chance to learn more about how this all works and what I can do as a self advocate to make sure we're getting our voices heard. It is not always the easiest thing for me to walk up and communicate with people that I do not know very well about disability related issues. I may not have as much experience in regards to some of the things that are going on--but I do know it will make an impact with showing up and doing what I can to make a good impression. I do look forward to supporting my colleagues who work around the clock every day in making sure the disability community is a safe place for not only myself but every one else too. I am not sure how many legislators we will get the chance to visit and talk to at this event--but all I can do is my best with representing an organization that has such a soft place in my heart. If I am ready or not for this to take place next week--I better make sure I am prepared for a full day of being very educated & informed on what I need to do better. 

It's obviously not the most fun trips ever...but my presence will be needed as much as anyone else who plans to attend & learn what they can. I know things are going to be slightly technical and big words are gonna be used but the main purpose to do my best. I am grateful for the opportunity to do this in person without feeling so far away from people that I haven't been able to see for a while since our world during those crazy times. 

Mini Shout Out 

My best friend Danielle will be celebrating her 31st birthday tomorrow!!! I look forward to spending time with all of my friends and making some new memories with each other. We are going to meet up at Provo Beach Resort to play various games and then later head over to her favorite Mexican place for us to have dinner. I am grateful for her friendship and example in my life of what a good friend should be, which if you must know is very important and something I never mess around with. I cannot wait to see her tomorrow afternoon and catch up with what is going on in our lives. I wish her all the best not only now but in the coming year ahead!! 

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EARLIER TODAY----I participated on a meeting with an organization that asked me and my colleagues from the speakers network to introduce ourselves. It was incredibly short with not being able to share as much as I would have liked to in the moment-- but I am grateful to have been asked to participate. I am truly grateful for the opportunities being a part of the speakers network has given me and I look forward with more speaking engagements in the future. 

As I look into this new year, I know a lot of the same things in my life will continue and help me learn more about becoming a good self advocate. I still have challenges with trying to know where I fit into things and knowing my specific role is... but I legitimately hope for the best. I obviously may not have nearly as much expertise in certain areas like others do, but I am determined in trying to keep growing more as a person. 

Night To Shine 2023 - This unforgettable worldwide event returns back in a few short weeks and I cannot wait to spend the night away with my friends. We are definitely looking forward to getting the royal VIP treatment and making memories that I know will be talked about for years to come!!! I am grateful for a chance to finally see this get headed back in person and being reassured of God's love for me as someone who is different than most. (Stay tuned for more!!)

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Mini Update

 LAST NIGHT---My family and I drove up to Salt Lake to Eccles theatre to attend a "Mat and Savanna Shaw" Christmas concert. It was the perfect way to lead into the holiday season with a message of hope about our Savior, Jesus Christ and remembering what he has done for us. I especially loved taking a little time away from being home and just getting into the spirit of what this holiday is about. I am grateful for the happiness and peace that comes from striving to be like our Savior, not only during Christmas time---but all year through. He is the greatest gift that any of us could ever want in this world & I know he's stuck with me through everything that life's had to offer. He has reminded me that I can do hard things and trust in him--no matter the circumstances I find myself in sometimes. He never fails to bring peace to my heart when I need it the most among so many other things along this mortal journey. It was heartwarming while at the Christmas concert to listen to songs about our Savior and not being centered on what gifts we'll have under our tree. He went about doing so much good for others & this holiday season I really hope to implement that in to my own life. I am grateful for his guidance and comfort in my life more than I can express. He continuously reminds me that I am not alone & even if I have made mistakes or done something I never should have-- He already took care of it. 

Some of my favorite songs I heard last night:

The First Noel

Breath Of Heaven

Piano Smash-Up (Believe from the Polar Express & Let It Go, from Frozen)

Where Are You Christmas? (From How The Grinch Stole Christmas)

Jingle Bells

Angels We Have Heard On High

I am incredibly grateful to celebrate the birth, life and example of my Savior Jesus Christ throughout this holiday season. He is the gift and nothing could ever replace what he did for me so many thousands of years ago--so that I could be here today. He showed compassion towards everyone whether they deserved it or not which to me, is something I want to share with people. I am so grateful to have the gospel in my life every day and being reminded of what I can do better in striving to follow the one who gave his life, so we could be here. I am grateful for his patience with me as I learn to navigate through difficulties that life may throw or want to help me understand. I am grateful for my testimony of him and want to do all I can to strengthen it so others will do the same.