The word that hurts my heart

I've had this blog post brewing in my mind for quite some time. I started notes about it over a month ago. It was painful to write, and I couldn't bring myself to finish it or post it. But now that some time has past I'm finally ready to. At least I think I am. So here's my notes that I started six weeks ago... 

"Eight years later...still can't get use to the word "deformity." Hard to swallow. My brain understands it. But my heart hurts. It stings my ears and cuts my heart (yes I realize that's a tad dramatic). But ever since Amaya was ten days old I've heard words like defective, abnormal, weird, different, etc. those words hurt.
And I cannot talk about or blog about this without tear filled eyes. It's something I struggle with...coming to terms with the language and the feelings they evoke. I know medically PFFD is an abnormality, a birth defect. Yet it hurts because it's not PFFD that's defective. Is implying that my child is defective. And she isn't."

I'm not sure how to end this post. I've tried to make peace with the word deformity, as well as other words. Yet, eight years later I still struggle. I think mostly it is because when you talk about PFFD and it being a birth defect or a deformity, you not only talk about it but about the person who has it. And it's hard to distinguish the two: that the PFFD is the abnormality not the person. And that even though their leg is "deformed" they are not. And as a parent it's hurtful to have any word like that associated with my child, even remotely.  My brain and heart have a hard time seeing eye to eye on this issue.

Thanks for reading along and letting me vent. And for seeing Amaya as more than a child with a birth defect, or limb deformity.