The Adventures of Chopper & T: Sharing my heart

There are no guarantees in life. Hopes and dreams are often times fulfilled in a way no one expected. I'm not saying in a bad way, just a different way. My daughter Tiana Hope was born with a rare brain disorder called Pachygyria, or Periventricular Heterotopia; along with Megalencephaly. This rare neurological condition means that the neurons did not migrate outward as they should have, leaving behind neurons that cause seizures which in turn leaves behind less grey matter which causes developmental delays, mental delay, autism, sensory & behavior issues, along with much more. Early intervention was key. Her condition was not fully diagnosed until much later, but that didn't stop me from getting her all the help and assistance I could. This included many nights of of research, second opinions, doctor appointments, paperwork, fighting for therapies, more paperwork, and creating ways myself to assist her along the way.

I've learned as we've both 'grown' that it truly is the little moments that matter. Slowing down to appreciate them instead of holding on to fear and worry was a challenge. Each and every milestone has been a celebration, not only of Tiana's progression but of who she is. When T was 7 we adopted a stray pup, an American bulldog we named Chopper. Chopper and T were best best buds. Tiana may have been my angel in disguise but he was hers. I knew one day we would share our experiences with hopes of helping others. Writing, prayers and her crooked little smile kept me sane throughout our journey.

I decided to self publish "It's My Life & I'll Smile If I Want To: a journey towards inspiration", a poetry book that essentially stemmed from my daily journaling. Sharing the raw emotions I struggled with will hoefully help others know they are not alone on their journey. Then of course there's "The Adventures of Chopper & T. I wrote this to help spread awareness that we all have differences, that it's ok to ask questions but being a friend is what matters most. This book is a zany adventure story that shows how art, music, and nature can help with emotions while also bringing awareness of rare and invisible disabilities to children at an early age. I shared the vision I had with illustrator Alexandra MacVean who captured them both perfectly with her whimsical and bright illustrations. An activity book and sensory tote bag is in the works, with a completed vision for a book series. Donating my books to many local libraries and schools has been important to me as I believe this will offer more awareness to the community.

My daughter is now 20, living with five other amazing young ladies. She will always need care, she will always require an advocate and she will always illuminate joy and love. I intend to be there for her forever and always. Letting go is the most difficult thing I've had to do, and as a mom to a child with special needs I cannot, nor will I ever fully let go. I am learning to loosen my grip a little more each day. Yes, she may be childlike despite her age, but Tiana Hope has grown into a beautiful young lady- finding her way, at her own pace. Words cannot express how proud I am of all her accomplishments. Her determination has shown me just how strong I really am. To all the mommas, poppas, siblings, and caregivers- stay strong! You are not alone!

Please subscribe to my blog and like my author page on Facebook along with Instgram and Twitter.You'll find links to my books, upcoming events, helpful tips, inspiration, including posts on our new adventure: the boat life living aboard Summer Reign! Our goal is not only to cruise but to provide sunset sails for parents and caregivers as a respite for all they do. I am available for speaking engagements, school events, story time and Creative Journaling sessions called Project Journal: Learning As I GrOw.

For the record, I think someone at Disney overheard me saying her name and shared it at the castle. Tehehee. T is my true princess!

Remember; always follow your dreams, be inspired, and find adventures along the way!

~ April XO