In previous entries I have written about the guilt my mom may have grappled with, and I have also written about the guilt my friends may have had in the face of accidents.

But what about my own? Do I have any guilt that the O.I. has inadvertently brought on? Yes, plenty. Do I know how to deal with all of them? No absolutely not.

I feel guilty when my friends can't go places they really secretly want to go because it's not accessible for me. I feel guilty that someday my brothers might have a child with O.I. I feel guilty when family vacations are limited to what Sandy can or can't do. I feel guilty when I interrupt a crowded restaurant of diners who need to stand-up and pull in chairs so I can get past. I feel guilty when parents come up tell me "my child is severely disabled and is not nearly as capable as you are.." I feel guilty when I hear about babies with O.I. who are taken away from parents who are accused of child abuse. I feel guilty when I hear about how much my mother cried in my earliest days. The list could go on forever, each statement more absurd than the next.

Many of you are probably thinking, but Sandy none of this is really your fault or anything that you can control! I know, I know. Believe me I've told myself hundreds of thousands of times that friends are supportive. Family will always love you. Strangers are not blaming you. And you had no choice in this odd chain of events, it is what it is.
Yet that feeling exists. It's difficult to explain what it feels like but I will try: It is in the slow wave of red that washes over my face as I get embarrassed, it is in the uncertain eye-twitching awkward glance around the room, it's when I look down at the floor and mumble a useless "I'm sorry", it's tangled in that lump in my throat that I try to shrug away, sometimes it's in the complete blank stare that I give - eyes wide and filled with all the things that I could say but shouldn't need to. The feeling can be microscopic and a mere speck of dust on the tip of an eyelash, or it can be an enormous shadow that flicks across my face like clouds pacing in front of the moon. 

So how do I deal with it? Well that's an unfinished answer because I haven't really figured out how to exactly. Part of it is that I am getting better at my own self-confidence, and realizing my own self-worth. The notion that I am valued and not a free-loading burden presents itself to me in various ways every day. These are the moments when I wish my heart and my head were not such polar opposites; because the fact of the matter is at the end of the day no human being should feel guilty for being. Sometimes those moments of realization happen to snag on the fishhook of my attention, and then it wiggles desperately in front of my face until I think okay already, I get it - I have something else to be proud about! Other times these moments slip between my fingers no matter how many times they fall into the palms of my hands. But like a child splashing in the first real summer rainstorm I am out there, palms open and upward - grinning eagerly for that next opportunity to catch a drop of something sweet and joyous. All it takes is one drop for your entire hand to feel wet.  

In an odd way I am grateful that I am able to feel guilty at times. It means that a.) my friends & family are honest with me b.) that I am able to be honest with myself c.) that I am not living a life of false pretenses. This is the other way I attempt to deal with this sense of guilt that creeps up on me: I recognize that it is there. Sure it's never comfortable and it's never something that I look forward to doing, but every time it pops up I have been able to come away from the incident with more of myself intact than buried.