Business Trip

NACDD Conference (Mini Story)

I'll admit that serving on two governor appointed councils has at times, made me feel like I'm a little bit of an outsider who wishes they knew a lot more in regards to disability awareness. It's obviously hard when I feel like everybody else knows more than I do, because they have more experience advocating for people with disabilities and I am just tagging along for the ride.

It was thoroughly enjoyable to learn about what other developmental disability councils are working on in their states and trying to get ideas from them in regards to making the UDDC better. I attended two break- out sessions that I really liked so much and was able to learn about ways we can make disability inclusion a part of literature, etc. I was able to share my feelings on what we learned from not being in the epidemic and trying to see how much we could grow from our experiences in it. 

Hotel Room Key Problem (Tenth Floor)

To make this very short--- I ended up going to the wrong number room in the hotel we were staying at and they had to call an engineer to come up and fix my entire door lock because the battery inside of it-- had died itself out. After waiting for a little period of time, the engineer person came up to my floor and helped me fix the door lock where you insert your room key into. Luckily, I was able to get into my room without any problems during the remainder of my stay there in Washington was a lot more pleasant and comfortable once I noticed my room temperature was set at 68 degrees. *(Much earlier that evening after getting into the hotel, I walked into my room and it was set at 62 degrees!!! Burr!! Talk about being extra cold when I just wanted to be in a nice warm bed and relax after a very long day of traveling in airplanes all day!!)

Coming Back Story (Mini Version)

We boarded the airplane that was going to fly us from DC all the way to Newark, New Jersey and then we would go from there back to Salt Lake. Our flight ended up getting delayed and canceled without any kind of notice whatsoever and being left stuck in the DC airport until we were able to make all of the new arrangements we needed to reschedule our flight to Chicago. There was apparently bad weather in New Jersey that would make the aircraft being unable to land safely. We were told that it would be an hour and forty five minute wait until they knew of anything else leading up to getting us back into Utah, which at the time felt an eternity because anything that I had expected to not go wrong ended up going in that direction. We were asked to deplane the airplane as well as gather all of our belongings and head back inside of the DC airport for what was supposed to be a four hour layover in New Jersey. We ended up having to rest up in the airport which if you ask me is not the best place to unwind from a business trip, but all of us made the best of what we had at the time. To make this story less complicated-- Our executive director had us grab all of our essentials that we'd need to have as we would have an overnight stay in Chicago. I was lucky enough to have grabbed all that I needed to make sure I was prepared and ready to go for tomorrow as we would finally head back home. (They did not necessarily feed us too much on the airplane which I did find rather odd because when you are on a flight for that period of time, all I wanted to do was have something in my stomach to hold me over.) #LikeForReals 

We had rescheduled our connecting flight from DC all the way to Chicago...but little did we know that was not going to end up being the case. There was a really bad rain and hail storm in Chicago and they were unable to land the plane, which lead to my anxiety being a lot worse than it needed to be. I forgot to mention that the unexpected turbulence that we felt like was as though we were riding on a rollercoaster, believe it or not--it's true!!! The pilot announced they would have to make a pit stop in Indianapolis which was right in front of us and at this point I just wanted everything to return back to normal and we could get on with the rest of our trip.


Prior to this happening I really tried my best to keep a smile on my face and yet the tears came, because I just simply wanted things to work out for us. (Luckily, I was able to get some comforting words and a very nice hug from my executive director who genuinely reassured me of knowing it would all be okay.) #TalkAboutAFirstTimeForEverything.

We finally made it back to Chicago and ended up booking a short night stay at the exact hotel that I competed at for the 2019 national miss amazing summit. It brought back a lot of memories for me as I walked into those doors and remembering the excitement that I had knowing it would be a once in a lifetime opportunity for me to share with people what was really important to me. Me and my colleague had a chance to quickly grab a bite to eat before heading to find our hotel rooms for the evening. We finally got a chance to get all cleaned up and off to bed for the night--which if you ask me after the crazy day we experienced--it was so very much needed!! (Did I forget to mention that the airplane was old & had no air conditioning whatsoever?? Yes...No air conditioning and wearing a mask on your face inside of an old airplane with a lot of people crammed into one spot is a lot harder to deal with than you would think--Believe me!!!) 

Long Story Short---We ended up making it back into Salt Lake safely and then was able to find my mom after not having clear directions about where to find her outside of the airport. I did enjoy being involved with this event in a state that I have always wanted to visit and check out---which if you must know it was a dream come true!! I wished had an extra day with seeing a lot more sights and sounds of what DC had to offer but we had to get back home sooner than later. 

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Free Write

NACDD Conference (Two Weeks)

Yay!!! I am excited for this opportunity to attend an event in the historic state of Washington, DC and in hopes of getting a chance to sight see while trying to capture photos of how beautiful that state is. I look forward to learning about what other developmental disability councils are working on and trying to find some ideas for our UDDC to put into our curriculum. It is definitely gonna be an experience to remember as I navigate through this world of what DD councils do on a regular basis and trying to have a lot of fun at the same time!!! I can only hope this experience will be one that I can look back on with a smile & just simply make the best of whatever comes in my path. I am very excited to learn one of our colleagues who will be presenting at this event and look forward to hearing what they have prepared to make their session one that nobody will soon forget.

Brave (Official Lyric Video)

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One of my good friends reached out to me about sharing my perspective in regards to what disability pride means to me and since I had missed my chance last year, I decided it was the best time for me to share a little bit about myself. I will give you a brief glimpse into what I prepared for this social media post that will be getting shared within the next few days ahead:

"I have a genetic disorder or a learning disability called Fragile X Syndrome, which basically means that my X chromosomes do not work like they are supposed to and are literally hanging themselves by a thread. (Just an FYI: It can be cured with medications that I have taken my entire life to help me focus and concentrate on whatever it is I am working on to help me not be distracted.) This has been a part of my life forever and can only imagine what would happen long after there is a very legitimate and permanent cure for something like this---I will not struggle anymore with things that have been difficult for me to understand."

It's been really hard to keep this on the down low for some time and the more posts you see on social media will be in regards to this topic. I am grateful for the opportunity to share a little bit of my story, which is a lot more than I've ever shared with people outside of my friendship zone. It's been such an ongoing struggle for me to hide all of this from people and not want to let them know more about what kind of person I am rather than being known for my visible challenges. I may tear up easier than most people in this world do because I'm such a tender hearted person who knows when they have made an absolute mistake to reflect on ways they can fix it rather than fall apart into a million pieces. I am truly grateful for this experience to be highlighted in a post that everyone who knows me will read through and hopefully be inspired. 

(Stay Tuned For More) 

One Month

It's hard for me to believe that in less than a month, I will conclude my service with being on the best disability leadership committee ever. I am grateful for the memories and experiences that I was able to share with my friends who made it an adventure every time we had a meeting over Zoom. We definitely learned and grew so much more as individuals than I think we ever could have imagined possibly seeing ourselves as in a million years from now. I am grateful for the heartfelt moments we shared together as a group and even when it was hard to keep a smile on my face, I tried my hardest to get as much out of the meetings we had as I could instead of just leaving you all hanging out in the dust. 

It was such an incredible journey for me to serve as a committee member, secretary and chair of this YLC so much more than you could ever know. I truly loved being able to create our meeting agendas and make them look cute in anyway that I could while keeping a professional outcome, which if you must know was not something I took lightly. I loved being able to listen to your ideas on what we could work towards with making our committee the best ever and trying to never lose sight of what we can do rather than focusing on what we can't do. I especially liked being able to come up with and answer our icebreaker questions as we prepared for what we had on our agendas to look forward to talking about. I will greatly miss being on our meetings every three months and learning from you all about what we can do to make the community that we live in a better place. 

I am so grateful for the unforgettable memories and lessons this committee taught me about what it meant to be a leader within the disability world. It was such a delight to be in charge of what we needed to have a lot of deep conversations about how we could make this community we live in better and accepting of lots of people like ourselves in society. I will greatly miss you all so much and cannot wait to keep working w/ USILC in the distant future on ways I can be more engaged with disability related issues, which I know-- are still tough for me to understand sometimes but I can only hope for the best outcomes possible as I move forward with my advocacy journey. I love you all so much and wish you all the best of luck as you continue on with things that I cannot wait to hear about if we ever see each other again!!! 

(To Be Continued) 

Five Years

Summer 2017-2021

FIVE YEARS AGO----I decided to quit my store maintenance job of almost two years and wanted to take a chance with being involved on the speakers network. It has been such an incredible experience for me to educate individuals with disabilities about issues that affect our everyday lives and getting that message of hope out there, that they can accomplish many of their dreams. I am grateful for the confidence boost this experience has given me over the past five years and learning how to be more comfortable when it comes to talking in front of large groups. I have no legitimate plans to stop advocating for the disability community and hoping to continue this platform of mine where I can keep getting my voice heard, rather than being silenced from people. It's almost hard to believe five years has come and gone so quickly.. but I am very certain there are only more people to educate about issues that need to be addressed, which if you ask me is not much of an understatement. It has been such a delightful experience to be asked to come back to not only but a few disability conferences or workshops to teach about these topics that we need to bring to the table. How did these many years arrive and leave so quickly?? It has been such an amazing journey for me to take on with my fellow colleagues and learn more about what we can do to spread awareness about how we can make the disability community a better place than it is. 

(To Be Continued)

New Song

Hilary Weeks - Soul On Fire

If you've stuck with me on this blog for the past six years, I have obviously written up about some of my favorite songs and yet here I am again doing the exact same thing. This song I have linked into my blog post today has become one of my favorites and I cannot stop replaying it multiple times. It has reminded me so many times about who I really am and what I can do regardless of what others think--which if you must know is a completely different story. It's been a whirlwind of emotions for me to reach this point in my life and not feel the least bit of gratitude for what I have accomplished. I have neve felt more than just slightly envious about not being more involved with my favorite things after this summer ends and I can't imagine what else life has in store for me, once I say a tearful goodbye to what has shaped me into who I am now. 

It's always hard for me to write up about songs that I love so much & trying to sound eloquent as to why it has impacted my life as much as it has. I am grateful for the peace it has given to my heart as I learn about why I have to leave things behind for others to love as much as I did. I felt disappointment with pretending not take what I wanted to do one last time personally and yet this week has definitely shown me, that all I can do is just keep my soul on fire. I'm certain that my colleagues and friends know I have so much more that I need to offer towards the disability community as these next few years pass on. I know there is a lot more unconditional love and potential within myself that needs to be shared, whether I am ready for that or not. I know my heart will always belong to where this journey of mine began and can only hope to see myself grow into the person I need to become. 

I know this is a very spiritual song for those who are reading through this, but I am hopeful things can only continue to make me the person I need to be in the future. I am grateful for the ongoing support & love that my friends have given me as to whether or not I deserved it throughout the last few years. It's been heartwarming for me to see how I am never alone when things get tough and uncertain--but I am grateful to know there is a lot more I can do to tackle my problems. This song has helped me feel a lot more at peace when my anxiety has gotten itself out of control and wanting to get in the way of every single trial that life has ever given to me. #SoulOnFire #HilaryWeeksMusic

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 Self Determination Presentation (Next Wednesday)

One of my colleagues and I are excited to teach about this important topic at the tenth annual NINJA youth leadership conference next week. I am looking forward to giving this message of hope for those delegates who will be participating with us and learning about what it means to be self determined. It's definitely a treat to return back to a conference where my self advocacy journey began and luckily this experience will be one to remember. We also have a fun activity incorporated with our presentation that hopefully everybody likes answering questions to and not feeling bored out of their minds, if you know what I am saying??? #NinjaForLife

Friendly Send-Off (August 2022)

I'm not certain if this will end up being a surprise or just one of those heartfelt experiences that comes once in a lifetime?? It is definitely going to be a very tender moment for me as I see my time with this youth leadership committee come to a bittersweet end & not knowing what the future holds is a really emotional feeling to think about. I can guarantee there will be tears involved with seeing my years of service with this committee not being needed and realizing my youth days are over will be even more tender hearted than I could ever put into words. I am not ready to grow up and not be involved with an area of my life that I have grown to love so much--but can only hope for the best as I tearfully move on with other things. (More about this later!!!)

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