It’s been a long time since I thought about those first few days with my daughter. Actually, that’s a lie. There’s not a day that goes by that I don’t think about the encephalocele, that pesky bit of brain matter growing out of the back of her head. The still-growing scar on her misshapen skull makes damn sure of that.
It’s always peeking out, just below her curls.
I wonder what she’ll think of that, someday, when she realizes that she’s not quite like the other kids. I know there will come a day when she hates it, another when she accepts it, and another when she realizes just how grave a situation it was… and what a miracle it is that she is still around today.
I know enough, thanks to my nursing background, to know what an absolute miracle it is that she’s walking around, talking, and demanding that I paint her bedroom pink. Not a day goes by that I don’t thank her for showing me the way, for helping me find my light, and for using that light to help others.
She’s the reason we, this Motley Band, are here. She’s the sole reason that this site, which has helped so many, exists. Without her, I’d just be some blogger with a blog that I use to pontificate about the underrepresentation of kumquats in today’s media. I’d still be Your Aunt Becky, but I wouldn’t have done this. Any of this.
In her short life, she has altered the path of so many. In her three small years, she has done so much more than I ever will.
While I could sit here, raging against her birth defect – which has given me a wicked case of PTSD – I don’t. I celebrate it. I celebrate that one tiny bit of brain that has changed the course of my life forever.
Today, I ask you to share your stories of birth defects, birth trauma and birth injury. There are so many of us out there in the shadows, waiting to share how their lives have been changed with a few small words, a diagnosis.
The greatest stories remain untold, of course, not from a desire to tell them, but from a lack of an understanding ear.
In here, in this cozy library, fire crackling in the background, as we sit on overstuffed leather chairs, we are ready to lend you our ears.
We’re ready for your stories.