Perhaps I am just in the middle of a really hard season, or maybe the weight of being the mother of a child with a rare genetic disease is taking a toll on me? Either way, life seems to be moving [...]
What I had envisioned to be a relaxing soak after a really hard week, turned into a sob-fest. The ten minutes of peace, alone in my tub, was the only solo time I had to myself; the only time I [...]
Next week marks four years from when I first shared my son’s diagnosis with the world. As we approach this milestone, the emotion I felt around this time weighs on me. Remembering the [...]
It’s true that food prep makes life easier for parents but, when you’re parenting a child with any chronic condition or special need, food prep is a necessity. It is officially Summer, which [...]
“I can’t believe that almost 30,000 people just read the words ‘Tuberous Sclerosis’! You are spreading awareness! Thank you so much!” This was the first direct message that was sent to me [...]