You are More Than a Sum of Your Parts

Oye. What a week so far.  I started on a high note, and it sort of went downhill from there.  Add in getting sick, topped with preparations for our vacation on Sunday, and I am absolutely fried.  I had to go in to school for a little on Wednesday while running a fever because some […]

Preschool Bound!

If you have been reading my blog, you know I have been very frustrated with the preschool process.  It’s being going on for months now, and I have to admit I attacked it from the beginning like an angry mama bear.  I never gave the school a chance.  In my defense, I am programmed at […]

Everything is GREAT, but…

I love going to our appointments at CHOP.  The doctors there are really wonderful, and when you visit they make it multidisciplinary, meaning you make one trip and see a slew of specialists.  It’s already worthwhile to see our amazing doctor, Dr. Brandsema, but it makes it all the more worthwhile when we get to […]

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 […]

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 […]