Why this blog? I have a story to tell, and it might sound a lot like yours. Maybe hearing my story will help you make sense of what you’re going through.
Having von Willebrand disease (VWD) has profoundly shaped who I am and the way I live my life. It was been, in many ways, a solo journey. Neither my parents nor my siblings have VWD. I am a mutation. I’ve always found this an amusing anecdote. Jean. Fifth child of seven. Mutation.
Now I don’t mean to say that I’ve been alone on this journey. I grew up with two wonderful parents, six scrappy siblings and a gaggle of friends. Later, there were more friends, lovers and eventually a husband with whom I raised two remarkable children, both of whom have VWD. Many of these people have been with me all along the way, supporting and loving me—and I them. However, none has had a greater impact on my life than my mother. There were a couple of very close calls, and it was she who got me through.
I grew up in a rough-and-tumble working-class family. My dad was a skilled tradesman, and mom stayed home running a household of nine. My nickname was “Bruiser.” I always hated that nickname. I preferred to think of myself as part Dalmatian. No matter which way you looked at it, I was often a sight to see. Each Saturday night I’d sit soaking in the bathtub counting my bruises, “33, 34, 35…”
My VWD wasn’t diagnosed until I was a senior in high school, just a few years after VWD was isolated and named. Finally, there was a name for what I had. There was a reason why I looked like I’d been knocked about. And a reason I hit puberty feeling as if I needed a bucket between my legs.
As the mother of two children with VWD, it has sometimes been a challenge to keep things in perspective, especially when they were young. And even now that they’re grown, my heart can still skip a beat thinking of the complications in their lives from VWD. My son has uncontrolled epilepsy and attention deficit disorder, and from the moment he popped out of my womb he was a whirling dervish. It is a scary trio.
My daughter has a more mellow personality, yet being a female with VWD is a challenge all its own. Being their mother demanded a calm courage and a deep reserve of humor, and though I tried, I did not always succeed.
My posts are personal reflections. They aren’t intended to represent medical fact, and there isn’t any particular order. Rather, my intention is to candidly recount my experiences with VWD. I hope you’ll find some of my musings an affirmation of some of your own experiences, and I hope you’ll join in. Welcome to my blog.