Uncategorized
It’s been a while.
Life has been a whirlwind and I haven’t really had a moment to take it all in. I am grateful for the chaos though, as it keeps me too busy to get stuck inside my head for too long… Read more “Bittersweet”
Uncategorized
A couple of days ago, I asked my four year old son if he wanted to come change his baby brother’s diaper with me. As I slowly made my way over to the changing table, he ran (as he often does, because everything seems to be a competition these days) and arrived there first, stating, “I won Mommy! I’m faster than you. You’re slow. You wear leg braces.” Read more “Just ask me.”
Uncategorized
I have never blogged before. Maybe because it felt exhibitionistic or maybe because doing so presumes people will be interested in what I have to say. But recently, I have felt a need, an urgent and desperate need to express myself- to share what’s going on with me and my body, to help people understand what it’s like to live with a progressively debilitating disease and ultimately, to help raise awareness and call attention to this orphan disease. The truth is, hardly anyone even knows the name of this disease that I suffer with every day. Read more “It’s My Birthday”