Updated: Nov 4, 2022
For a long time, I have wanted to bring awareness, change, and to assist the disabilities community with the challenges we face daily. I wanted to remove the disconnect that had been created as conditions progressed and society chose to wear blinders. Blogging was the last thing that I imagined doing, but if it is not being written, it has not been said. Both blogging and having a nonprofit organization, which you will hear more about in future posts, were out of my comfort zone and expertise. Anyone who really knows me, knows I am a behind the scenes type, who enjoys being in that space, but here I am now and there is no turning back! I strongly advocate for others and myself. I want to make sure that people with disabilities are always in the room, even when we are not physically there. We will not become afterthoughts, have hidden entrances, or endure uncomfortable accommodations for the lack of accessibility.
This blog holds space for those with disabilities to share their experiences, educate, and hopefully open minds to the challenges, as well as victories we experience. It also holds space for those that would like to gain knowledge on how to assist someone with a disability, and their caregivers. I will not leave out the selfless, caring, relentless, unending sacrifice of caregivers. One of my goals in this blog is to hear from caregivers, because what they do does not go unnoticed. My hope for this blog is that it will bring awareness, inspire, encourage, educate, and push for change. So, respectfully engage, share, and support each other in this space. You'll find that I often ask questions within a post to get the conversation started, and will do my best to weigh in on each comment submitted. I also encourage suggestions on what you would like to talk about or bring awareness to. I do not claim to be a expert about disabilities because it is different for each person but I will do my best to research and familiarize myself with each topic prior to posting.
I in 10 out of every 30 million people in the world have a serious lifelong condition, with more than half being children. There are about 7,000 different rare diseases. A rare disease, disorder, illness, or condition affects fewer than 200,000 people in the U.S. Check out NORD www.rarediseases.org for more information. I am blessed with the opportunity to live and see through the eyes of a person with a progressive physical disability. This has been my life since the summer 1996, when my world changed. It took two or three years after that to even get close to a diagnosis, and genetic testing in 2021, gave me a diagnosis of Limb-Girdle Muscular Dystrophy 2E. My daily life is a challenge, and I now require a little more assistance than I use to, but I continue to push forward. Some of my doctors have told me that they do not know how I am still walking or how I am not in more pain due to my disability. I know that both are a blessing for which I thank the Lord for daily. It is hard for me to ignore those things that I am unable to do anymore, but I try to be intentional about being thankful and grateful for what I am still able to do. People say they understand, but the reality is that this is something that you would have to experience to really understand, and even still, it is different for everyone. I will be sharing my story/journey along the way on this blog, but it will not be all about me, because this blog is about us.
I respect your time, so my blog posts won't be long, but impactful. I want to save room for discussions and digging deeper into the matters at hand. For me, it is about changing mindsets around disabilities and showing that not all disabilities are visible but should be equally respected. I hope you will sign up to receive emails for when new post are available. I am looking forward to this journey and seeing where it takes us!