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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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Free Entry

Self Advocacy Conference (Next Week)

I'm excited for this conference to kickstart on a positive note and can make up for lost time with all of my friends who I have sorely missed so much. It will be an amazing experience for everyone who signed up to participate with us and hopefully can learn some more things, in regards to being a self advocate within the disability community. I really hope that some of my NINJA friends will be there and can support all of us who have worked so hard into making this conference happen, which if you ask me is a completely and different story for another time. (More about this later on!!!)

NACDD Conference (Travel Process)

All I ever did was send off my issued state identification card in an email and in the hopes it didn't end up getting lost or misplaced somewhere. I am truly hoping this national conference will be an experience for me to remember and learn as much as I can about what other DD councils are working on all over the United States, which if you ask me I'm sure is pretty legitimate stuff. (Hahaha!!! Please stay tuned for more!!)

Ninja Conference Tribute (Repetitive Post)

"TEN YEARS AGO—I decided to take a chance to participate in a disability youth leadership conference & little did I know how much of an impact it would have on my life all these years later. It ended up being one of the best decisions I ever made with trying to learn as much as I could in regards to all that being a self advocate is. I am grateful for the kindness and unconditional love that everyone has shown me throughout these past ten years and just giving me an experience I’ll never forget. It is really bittersweet for me to have to say goodbye to what has shaped me into the person I am today and hope to be in the future. I LOVED all that this conference taught me as I returned back year after year, knowing my heart will forever be a part of this event I will keep close to my heart. I genuinely look forward to seeing what other things my friends will accomplish. Thank you so much for changing my life forever and giving me opportunities that I will keep close to my heart." #NINJAForLife

Headlines

NACDD Conference (Washington)

It's obvious that my chances of being selected for this are not likely and whatever does happen is all in the hands of who makes the final decision. I would love to visit another state in our country that I have never seen before and can only hope to one day see that dream come true. It would be an amazing experience to learn more about what other developmental disability councils are working on to make our lives have a lot more purpose instead of just being excluded from this world. I am not certain my presence will be needed at this national event due to the fact-- I am not as experienced in a lot of things as you would easily think but you get the idea here??? Unless I hear of anything more in regards to this, I will keep you all updated on whatever happens next in my life!!!

People First Conference (Two Weeks)

This unforgettable event cannot arrive soon enough!!! I am excited for a chance to educate and inspire so many individuals with disabilities about the importance of self determination, while including a very fun filled activity that I hope everybody likes. It has been such a long time from when I was able to have any interactions with my friends since the health epidemic arrived & luckily it is completely died itself out of here. I am ready for a chance to make up for lost conversations and laughs that will be shared with every one who will be in attendance with us. Please stay tuned for updates and stories to come!!!

Ninja Conference (Repetitive)

It's been a part of my life for almost ten years and that to me has come and gone a little too fast. I am so grateful for the opportunity to head up to an event I love so much and not being as involved as I used to be has felt really weird. I am definitely going to be the most sentimental person in the room as I make a way through something that I've never looked back with regrets. It has been extremely painful for me-- with not being as involved as I have been in years past and it feels weird all the way around. I am truly saddened that my tender time with this conference has to come to a bittersweet end and not knowing if there will be anything for me in the future is another story. (More about this later!!!)