Blogs & Poems
Creating the Special Needs Standard in Our Mind
Currently, I am one of those moms now that weirdly asks things like “Oh, when are they supposed to eat again?” or “Oh wow he walks and he’s only 18 months?” The standards in my mind are so fuzzy – before I became a mom I had some general idea, but now that I’m a […]
Alternating Hemiplegia of Childhood – A Genetic Disorder – What is it and how can you understand it better?
February 18th, 2023, John and I decided to give our girl a chance. She had received a difficult diagnosis a week earlier – a diagnosis we were at the very first step of learning. She had symptoms other children didn’t have, and the symptoms other children had were ones that would change my girl’s life […]
Learning the Lessons of the Pit – even when you are no longer there
In my planner this week, on the very top, I wrote, “Remember being in the hospital.” To me, I know exactly what this means. To my audience, however, and those who may pick up my planner and read it I( mean, why not? It’s always in plain sight at my house!), I would like to […]
Medical PTSD: An Example of What It Looks like in Real Life
Three or four years ago, I would’ve walked the halls of a hospital ICU to visit someone. I was disconnected, I looked at the doctors as strangers, and I didn’t know what any of the monitor numbers meant. The smells didn’t bring back any memories – the alarms were simply annoying. I’d go along with […]
Looking, Reaching, Touching & Smiling – The Unseen Skills in Toddlers
Before Paige, I never imagined that patients with syndromes were different when children. Or should I say, I never imagined a baby with disability. My imagination never got past what I saw. With neuro-typical people, we imagine them as children – they fit the normal standard. They met all of the normal standards, and that […]