Harry the Fireman

If he has his way, Harry will be driving firetrucks by the time he’s old enough to reach the pedals.  For as long as I can remember, this kid has been obsessed with anything that has wheels, but his heart belongs to firetrucks.  I feel like one morning he woke up and decided to live […]

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 […]

Some like it HOT!

I know some people are going to roll their eyes at me for saying this, but I do really like the hot weather.  I would rather sweat any day than to freeze.  One of the things that keeps me inside instead of on my run is not knowing how to dress, or dreading the cold […]

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 […]