Most people have a hero in their life that they look up to on their journey to discover their purpose. Our heroes can change over the years from a flying superhero to a successful entrepreneur, and anything in between. And sometimes we get the opportunity to meet that hero and bask in their greatness. I, however, have the privilege of raising my hero who has not only changed me completely as a person but has also shown me my purpose. My daughter, Hannah, who is seven years old lives with a disease called Rett Syndrome. My heart breaks that she has to endure this disease every single day. But her joy, courage, and strength have inspired not only me but many others. Hannah’s purpose and mine are intertwined because she is the message that so many people need to hear, and I am the person to write and tell her story.
Hannah was born on March 30, 2012, in Monroe, Louisiana. She was perfectly healthy and hit all of her milestones up until 12 months. We were completely unaware and shocked when she started to regress after her first birthday. She was mouthing almost anything she could get her hands on and slowly started to lose some of her abilities. At one time she could crawl, feed herself, speak, and play with toys independently, but now requires assistance for every activity. At the first sign that something was wrong, we started to visit doctors and began several therapies hoping it was just a delay that she would overcome with time. With continued regression after a few months of therapy, we knew that something more serious was going on with Hannah. We went to other doctors and ended up doing genetic testing to test for several possible syndromes.
On December 18, 2014, Hannah was diagnosed with Rett Syndrome. We were absolutely devastated and scared for what lie ahead for our daughter. We immediately began to research and build relationships within the Rett community of parents, doctors, therapists, and loved ones. Hannah’s regression continued and every day was a different day, but we began to adjust to Hannah’s needs and those of her brother and our family.
When Hannah was around the age of three, I got the idea to write a book about her and her brother, Hudson. I didn’t know if I would publish it, but I at least wanted a keepsake of their incredible bond and a story that would highlight Hannah’s love of ocean life. I didn’t know where to start with my book but was later inspired to move forward after attending an acting seminar with my son. The host of the seminar shared a story about using your talents for the greater good. This message resonated with me and I went home that evening and wrote the entire book of The Adventures of Bug and Boo- Under the Sea. But so it goes, life happens, our family moved states and the book got pushed to the side for months. I was disappointed that I hadn’t continued this project, but little did I know at the time that the book and its entirety was not yet complete.
As Hannah became older and her symptoms of Rett Syndrome became more apparent, other kids and adults started to take notice. Kids especially were curious and wanted to ask questions, but a lot of times their parents would discourage conversation. Not in any way to be mean, but they thought their kids would say something wrong or we would feel uncomfortable. I understand this point of view because I too thought this way before Hannah. If we ignore it then no one could get upset or have their feelings hurt…or so I thought. After many experiences like this, some good and some bad, I realized that it was all about educating people. Kids learn by asking questions and if we do not take the time to educate and answer appropriately then they will draw their own conclusions. This is where the fear of the unknown sets in.
This is when I realized that I could use the book as a tool in the classroom. I was a former elementary teacher and I knew that I could help other teachers and their students. If we start learning about all members of our schools and communities then we could become a more inclusive society. We would look at people for who they are and not what makes us different. I also knew that this conversation needed to begin with the younger students and my book was the perfect vehicle to start a dialogue. I changed a few pages in the book to reflect my new mission and wrote a Teacher’s Guide that would not only assist the educator but use worksheets to extend the conversation past the book. I added ways that students could get involved and even suggested that they take the initiative and adapt things in their school to accommodate all students. When we get to know everyone we realize how much we have in common and open the door for incredible friendships and relationships.
I currently share our book and journey with students, teachers, and organizations. It is a complete honor to be able to tell Hannah’s story and give a new perspective to so many. I love speaking to students and I learn just as much from them as they do from me. Hannah has taught me so much and I am so passionate about sharing our message with as many people as possible.
I have completed my second book for The Adventures of Bug and Boo Series and I hope to have it out at the end of Summer 2020. I am also working on a Christmas Edition for 2021. With every book I publish, I plan to add to the Teacher’s Guide. I hope through hearing other’s perspectives, ideas, and stories, I can make this guide as universal as possible.
Our book is available on Amazon or you can buy an autographed copy from my personal inventory.
You can find me at…
The Adventures of Bug and Boo on Facebook
@hooksdenay on Instagram