Sophie’s Trip to Disneyland

by Amy Silverman Not long ago, we let Sophie play hooky from seventh grade for two days, and took her to Disneyland. I considered it an educational trip – every time we go, it seems, Sophie gets a little smarter. Some evidence: When Sophie was just shy of 5, she made her first real foray into potty training after the promise of Snow White panties in exchange for dry pull-ups. At 7, she showed compassion and […]


I held my hand against the tiny baby inside my belly while she moved and thought of the past few months. During the 20 week sonogram the technician told me it appeared that there might be a cleft lip & palate, water on the brain, clubbed feet, dilated kidneys and no stomach. The doctor said she wouldn’t live to or past her birth and referred me to another physician. The clubbed feet & water on […]

Five Ways for Exceptional Parents to Get Involved with Rare Disease Day-Tuesday, February 28, 2017

Rare Disease Day is an international awareness campaign that takes place on the last day of February each year. It is the one day the world comes together to recognize people with rare diseases with the goal to raise awareness among the general public and decision-makers about rare diseases. Why do rare diseases need an awareness day? As it turns out, rare diseases are not so “rare.” There are approximately 7,000 rare diseases that combined […]

Chapter Two: M.A.S.H.

by Brandy Pavia When I was a kid, I loved playing M.A.S.H (Mansion/Apartment/Shack/House).  If you’re over 30, don’t act like you’ve never played!  Strangely enough, each time I played, I’d almost always end up living in a mansion in Hawaii, with Keanu Reeves, our four kids, and a stretch limo.  Those answers may or may not have been rigged, but I’m pleading the fifth.  You’ll be surprised to learn that things didn’t quite pan out […]

Why I’m Buying Brain Hats for Both My Daughters – Including the One with Down Syndrome

by Amy Silverman I will admit that I was kind of meh on the whole pussy hat thing, but as soon as a post about the brain hat popped up on Facebook I was all over Etsy, looking for someone to make me three. One for me, one for my daughter, Annabelle, and one for my other daughter, Sophie. Not long after, I heard that there was heated discussion on some other feeds about how […]