Posted in Boston, Energy for Life, Friends, Gift of life, Hope, Hospital life, Immune Deficiency, Keith, Legislation, mito, Monthly Dose of Hope, Tutoring, umdf, Vampires on 9 August 2010| 2 Comments »
While tutoring last week, we took a trip to the Museum of Science. While there, we spent quite a bit of time in the Theater of Electricity. T seemed so enthusiastic about the technology that I joked she could be an engineer when she grew up.
“No. I want to be something else.”
“Well, what do you want to do when you grow up?”
“I want to cure mitochondrial disease.”
I do, too.
Posted in At the Doctor's, Boston, Friends, Hope, Immune Deficiency, Monthly Dose of Hope, Tutoring, umdf on 30 July 2010| 1 Comment »
We’ve had a relatively busy week. We spent the last four days driving into Boston for various reasons. This is not usually the norm. I usually go in about 3 times a week to meet with tutees and go to various medical appointments; Keith goes in to Waltham 2-3 times a week. This week just happened to be “one of those weeks”…
Posted in Energy for Life, Hope, mito, True, umdf on 27 July 2010| Leave a Comment »
I was recently told that people were worried about me. After initial confusion – followed by slight flattery – I realized why: I suck at communication. People only hear when things are bad (because Keith calls) and I fail to communicate that – most days – I’m doing just fine. So here we are. Because I’m not likely going to get any better at communicating regularly (just being honest!) and I do really want to keep everyone informed, I started a new blog. I’m hoping that through this page, I can keep you – my family and friends – updated on our life – the good and the bad. I want you all to realize that most of our life is pretty normal; we work, play, and enjoy life. We might, however, do it a little differently. Also, I’m hoping that, through writing, I can bring some awareness to mitochondrial disease and some of the other issues we face. Please feel free to pass on my writings as part of my goal in this blog is to open a window into living life with a mitochondrial disease – and a smile!
The woods are lovely, dark, and deep,
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.
-Robert Frost
Still Miles to Go 