I have a daughter with multiple special needs. Her name is Anna Grace and she was born in 2001. We didn’t know at first that anything was different, but as time passed, she began missing milestones. “Failure to thrive” and “microcephaly” were the first two labels… many more would be added over the years. Her current labels include: PDD-NOS (autism), intellectual disability, epilepsy, Ehlers-Danlos Syndrome, microcephaly, hypotonia, hypothyroidism, kyphoscoliosis, sensory integration dysfunction, hearing loss, high myopia, mood disorder, and she was failure to thrive from 6 months to 3 years. She sees numerous pediatric specialists and has undergone every test possible, but we do not have an underlying diagnosis for her challenges. Her physical issues stem from having EDS and her geneticist feels like she has another genetic syndrome that is causing her cognitive and emotional problems. Currently in a self-contained classroom focused on functional academics, Anna’s skills range from preK to 2nd grade. I don’t know what her future will bring… but I do know that she will not drive or live independently. I just want her to be safe and happy. Anna has a big sister, nine years older than her; her name is Jenny. Jenny is extremely bright, graduated from college in 2014 with a degree in criminal justice, and got married to her high school sweetheart. Anna also has a little brother, three years younger than her; his name is Dominic. Dominic also has ADHD and is intellectually gifted. He also struggles with a complex mood disorder and had PFAPA Syndrome through most of his childhood. I have invested everything of myself into being the best mom these children need.
Being Anna’s mother has consumed me. Every moment was taken with research, scheduling appointments, shuttling between therapies and appointments, meeting with school officials, and worrying about her future. Jenny was thrust into her teenage years with a stressed and tired mother. When Dominic was born, we didn’t know the full extent of Anna’s issues, nor did we realize the serious stress his birth would cause her. His infancy caused her seizure threshold to lower enough for Anna to develop epilepsy and she was hospitalized twice during Dominic’s first six months of life. I began blogging about Anna many years ago to connect with other parents… that blog started as Anna’s Journey and became Elusive Tranquility. I also created a series of YouTube videos about our experience with PDD-NOS. She wasn’t diagnosed with autism until she was five and it was a surprise to us. Through the videos and the blog, I have connected with so many amazing parents. None of us are alone in this journey.
It’s a hard life. I lost myself along the way. My foray into blogging, digital art, and photography was something that was driven by needing to reclaim my identity… something that was just mine. (And by the way, Holly Anissa is my first and middle name!) I found a way to pour my emotions into something tangible. Sometimes I’m lucky enough to share that passion with others by doing an art project, an invitation, or a photo session for another family. But mostly, I create for myself and have found my voice as an artist. Anna is always my muse… she inspires me.
Though she never played with toys, Anna received a baby doll when she was five years old from her big sister and a connection was made. She named him George Washington. Since then, she has added more baby dolls including several reborn babies and she loves those babies so much. Anna will not ever have a baby of her own and it’s poignant to see her play with her babies. She usually becomes obsessed with one thing at a time and those obsessions completely take over her life. Her current and past list of obsessions has included Andy Hurley (the drummer) from Fall Out Boy, Sheldon Cooper from The Big Bang Theory, the Minions from the Despicable Me franchise, Elsa from Frozen, and Murr from the Impractical Jokers. Anna also loves America’s Funniest Home Videos and fail videos. YouTube has become a fascinating playground in which to search for newborn baby videos and AFV clips. I love how easily she laughs. She would like a friend… one real friend. I hope she can have that some day. Thank you for learning more about her and for gaining a deeper understanding into why this site exists. <3