Map in Senator Schumer's office - Stony Brook & Setauket represent!

Hope on the horizon…

I swear I am trying to get better about blogging.  Each time I post, as I click the “publish” button sending my ramblings into cyberspace, I make a promise to myself that I will blog more often.  Then I procrastinate, followed by total avoidance.  When I do finally get down to business, I obsess over […]

HOPE for blog

Birthday Wishes

I truly understand what people mean when they say life is a gift.  Today I turned 43 years old, which is something many women would not want to publicize but I know firsthand that aging is a privilege.  My phone has been blowing up all day with birthday greetings and while I should be happy […]



If you don’t already know him, Javier is a hysterical, quirky kid who loves life and proudly marches to the beat of his own drum.  He loves his Nintendo Wii and Katy Perry almost as much as he loves writing risqué mad-libs and eating bacon in any culinary format. When Javier was 3 ½ years […]



Something about a birthday makes me feel the need to reflect on where I’m at, where I’ve come from and where I hope to go.  This year’s birthday, I spent way too much time frivolously daydreaming about what type of person, parent, wife I would have been had I never heard of Duchenne…  Imagining what […]



Picture day at school is a ritual that all kids are forced to endure not just on the day of, but for decades (I wish) to come.  Forced smiles in front of a staged backdrop that implies serious learning is going on when glamour shots is not in town will be pulled out for years […]



SUNDAY, PAST MIDNIGHT and cannot sleep.   Stared at Javier for what felt like a really long time. Still unable to stop or even slow the racing in my mind… listened to him breath, watched his restless sleep, tossing and turning in discomfort caused by cumbersome leg braces. Tick-tock, tick-tock… not sleeping is nothing new; writing […]