Still Miles to Go

Sometimes when dealing with something as ugly as mitochondrial disease, it can be difficult to keep the focus on the good and the cure, rather than the sick and the disease. For this reason, I feel incredibly lucky and blessed to have such an amazing support network of friends and family. Even through the bad, they are able to keep a smile on my face and laughter in my belly. They are able to remind me not to focus on the disease, but rather they push me to fight for the cure, to become part of the cure.

This week is Mitochondrial Disease Awareness Week. But rather than tell you more about the disease – I think I’ve do a pretty good job for the mito-illiterate – I want to share with you all the good and amazing things I am blessed to have in my life. Because living with mito is not just about living with the disease, it’s about living.

This summer has been full of adventure and fun. Keith and I got the chance to explore areas of our “new” state more than we have the past two years that we’ve been here. For instance, we took our first excursion to Canobie Lake Park:

Hampton Beach in New Hampshire for Fireworks on Wednesdays:

The Museum of Science with one of my tutee’s:

And the New England Aquarium:

We also got to meet some amazing people!
We finally got to meet my friend Matthew when he staying at CHB. He’s an amazingly fun kid who sings rap songs, tells jokes, and plays away the day with My Little Pony and Zoobles:

We met Senator Brown (R-MA) and his aide, Brad, while lobbying for Mito legislation:

And we met and became friends with Mrs. Massachusetts, Jane, who has helped us out with a few of our events:

We also met Demi Lovato while picking up my little niece from Children’s after her 3-day stay:

Finally, the past month or so has been devoted to planning for tomorrow’s Mito Mission: Possible Patient Education Meeting. The meeting aims to give patients and their families education and resources so that they, too, can become part of the cure.

Now I’m off to go live a little more by playing at the park with two of my favorite little munchkins.