First Day of Preschool!

I can’t believe this day is finally here!!  I have been dreading the first day of school for quite some time, and it really snuck up on me.  Of course I couldn’t sleep the night before, then in the morning instead of pressing snooze I turned my alarm off, so we had to hustle a […]

Happy 4th my Friends!

Dear friends (and family), I hope you had a great 4th of July!  I wrote this blog in my head on my 5 mile race this morning with some great friends.  I really have some amazing friends that allow my life to continue happily and I don’t thank them enough.  I have friends who come […]

My Little Rock Star

My little man continues to impress me.  Today we had to visit the cardiologist because Emery-Dreifuss has a cardiac component which may cause arrythmias.  We need to be on top of his function and the electrical component of his heart.  I absolutely love our cardiologist and I was happy to see her again.  We went […]

The Curious Case of the “I Can’t Do It”s

Warning: I am going to break your heart, but I promise to also mend it.  Read fast and you’ll get to the good feels. Yesterday we went back to camp with our friends Sarah and Rock.  The rain kept us out of Central Park, but we had a great time again in the gym.  The group […]

Missing the Save

I’ll just come right out and say it, sometimes I feel strong and amazing and superhero like, like I can do it all.  I have these days where I feel like I’ve got it all under control, and I like it that way.  I make lists and follow schedules and it’s all a way of […]

The Monster Has a Name

Today, it was confirmed that Harry has Emery-Dreifuss Muscular Dystrophy.  I can’t believe that this monster stealing his strength has a name.  It feels surreal and uncomfortable, but also final and reassuring.  Let me elaborate. Our first round of genetic testing was the myopathy panel.  Myopathies are the cousins of dystrophies, and they are different […]