My daughter, Haley, was born on Father’s Day, and after her birth I told my husband that I was good on Father’s Day gifts for 10 years. Ha! Little did I know that Haley was going to be the most amazing gift to our family and the WORLD! All children are gifts from God above. I know that. But Haley was a gift I never would have known to ask Him for.
Our “normal” with Haley lasted 9 months.
Then, I knew. I knew the future was going to be different than I had imagined. Yet, I didn’t know that it was going to be better than I had imagined.
After a couple years of testing, Haley, was diagnosed with Rett Syndrome in July 2015. Rett syndrome is a rare, neurological disorder occurring almost exclusively in females and becoming apparent after six to 18 months of early normal development. A quick Google search can give you many, many more details about Rett, but like any disability, there is a spectrum and no two individuals with Rett Syndrome are the same.
After Haley’s diagnosis, I immediately dove into research. I am a lifelong learner so Rett Syndrome and everything related was now my lifelong research project . . . and a form of therapy for me. Over the last 8 years, I have continually cycled through three main areas in my research: awareness, education, and advocacy. Each of these areas are valuable in making our world a better place.
I personally had little interaction with people with disabilities growing up, so I had to catch up on a lot of awareness myself before I could bring awareness to others. One of the most important things I became aware of was that 1 in 4 Americans have a disability. The disability community is the largest minority in America. Being aware that so many people around me have disabilities, I find myself much more forgiving, understanding, kind, and assuming the best in others . . . mainly because I need others to do that for me and my child.
After becoming deeply aware of my personal ignorance about disability, I spent hours educating myself on disability and the issues important to their community. I listen. I read. I ask questions. I am learning new things all the time and I do my best to never stop. Education can reduce fear and stigma often associated with disability. Also, education about disability produces empathy. And empathy can lead to action, like advocacy.
Advocacy is now in my blood and part of my every day. Because there is little awareness and education in our society about disability, advocacy is needed . . . not just by people with disabilities, but everyone. Advocacy is the key to people with disabilities receiving the services and resources they need to be participating and contributing members in our communities. Since Haley has entered my life, part of my personal advocacy work has included advocating for music therapy licensure in the state of SC, advocating for appropriate changing spaces in the public (so I don’t have to lay Haley on the floor of a public bathroom to change her) and advocating for educating elementary students about disability and the disability rights movement in America.
Haley has literally changed the trajectory of my life. Her life is valuable and a catalyst for systemic change in our world. I encourage others to begin their own journey of awareness, education, and advocacy so that together we can create a more inclusive world and a kinder one, too!