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 […]

Harry’s First Summer Camp

Sometimes I am just in awe of how the world works and the people who have been put in my life.  Through Harry’s muscular dystrophy I have networked a lot and met some really wonderful people.  Through running with the MDA’s Team Momentum I have befriended so many amazing people, one of those being a […]

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 […]

Pride

This weekend, Harry and I were able to shuffle up to PA to attend The Devon Horse Show and cheer on Harry’s Uncle Rusty as he showed his horse.  This is a very prestigious show; Rusty and his amazing horse Azor were up against incredible competition – 36 other horses!  In a crowd that big, […]

The Great Eval

My anxiety level has just peaked this evening due to our impending preschool evaluation tomorrow.  We have a meeting with our town’s special education program, and they plan to evaluate Harry for the upcoming school year.  Hold on, let me sip my wine and I’ll explain my two reasons for freaking out this evening, in […]

Love the Run

Hey, beginner runners!  I have some great news for you, a little secret I want to share.  Everyone hates their run at some point.  Sure, once in a blue moon we go out and the whole thing rocks.  There are probably also runners who love every second, and they can kiss my ass for all […]