About Us

We're not the typical family (who is anymore). My husband and I are what you would call a May December Romance. I'm May. He's December. It works for us. We always planned on having just one child (it was our compromise) and she arrived in the October of 2010. Our little Rae. She truly is our own personal sunshine. She is everything we wanted and everything I needed to feel complete (Yes, I'm one of those women that needed children). We live in mostly sunny, always humid Northeast Florida about 10 miles from the beach (we hardly ever go...I hate sand). Here's a brief introduction to our immediate family.

Evie (aka Rae): She is the sun we all orbit around. A two year old firecracker that is blissfully unaware of her differences. She laughs at inappropriate humor and physical comedy, giggles when I cry (no empathy I tell ya!), and, like many non-verbal children, when she's done with something she lets us know with a scream. She loves to watch Little Einsteins and Sid the Science Kid. She is doted on by all her family and all our friends.

Candice: I'm a stay at home Mom/therapist/taxi service/researcher/masked crime fighter (j/k). In a former life I was a student of History and Literature (finished my BA in 2010) and I briefly worked in HR. In my spare time (hahaha...what's that!), I work on family ancestry, bake, sew, work on art projects, and blog (I actually have 4).

Dude: My often quiet, seemingly calmer, usually more rational better half. Jacob allows me to be myself, even when I'm just being difficult and crabby. He is an industrial mechanic and much much more. He is the December to my May. He dotes on his little girl (which means he allows her to watch way more cartoons than I do) and is the softer touch between the two of us (I swear when she's older he'll give her anything in exchange for a kiss).

Mimi and G-Boss: Mimi is my soft place to land and my best friend. She is my Mom. G-Boss is my strength and my "fix it" man (no matter what needs to be done for Rae he will make sure it happens). When I feel like I can't keep going, I think of him and remember that the drive to push forward is inside me just like it is in him. We're very fortunate to live so close to my parents and I thank God everyday to have them here. Once a week, Rae goes to their house for a sleep over so Jacob and I can have "date night" (which sometimes means we go to be early...how exciting!).

Munkle & Family: They don't live in Florida, but they are always just a phone call or Facebook message away. Munkle (my brother) is a good mix between my Dad and my Mom. I always know he has my back. Yvonne, his wife is studying to be a nurse and if I have a minor question about Rae's health I call her. They have two wonderful children, Ethan, who just started playing football, and Claire, who loves to play dress up and dance. We don't see each other too often, but we're always there for one another...no matter what.

Rae's Hypotonic Journey: The diagnoses we have to date are...
  • Rett Syndrom (1 Feb 2013)
  • Gene Mutation, m.2882T>C (4 Oct 2012)
  • Global Developmental Delay (14 May 2012)
  • Epilepsy (9 Mar 2012)
  • Hypotonia (20 Feb 2012)
  • Myopathy (26 Apr 2012)
  • Scoliosis (20 Feb 2012)
The root cause...Rett Syndrome...officially diagnosed on February 1, 2013. After nine weeks of testing completed by Dr. Shoffner's team at Medical Neurogenetics, we finally received the desperately sought answer. It is both a blessing and a curse. A curse because we now know way more about what the future may hold. A blessing because we now know way more about what the future may hold. The day we received the diagnosis I hit the ground running (typical me). I contacted the International Rett Syndrome Foundation (IRSF) and Girl Power 2 Cure/Rett Girl. It is a community of dedicated, strong, been there done that families who will be my go to when a question/concern arrises.

When I started this blog, I hoped to reach out to other families that were trying to find their way through the hypotonic maze, but it has become so much more than that for me. It is a one of the best therapeutic ways I have found to help me sort through all the highs and lows of being a special needs mom. It has also allowed us to keep family and friends updated on how Rae is doing and where we are in this journey. I hope you find some humor, comfort, encouragement, and enjoyment from reading about our little ray of sun.