Ugly Like Me...

Dear Sophie. When I grow up.

I noticed in my status share about the car accident, I mention that it could have gone one of two ways-I could have walked away w/o hurting someone or I could have killed someone, like a CHILD.

I never, not once, considered a third option until recently. I never gave myself permission to think about MY life UNTIL maybe yesterday. It's a strange reality, when you stop and you face the fact--I could have died.

All I noted (in terms of me) was being surprised nothing was bleeding, except a knee. I could have sworn my face was broken. I was shocked I was alive, but it was peripheral. If you look at my car, it's obvious I could have died, but I didn't feel like I had the right to worry about me.

So this poem and video from my niece, Sophie, in its own way, blinded me. In its own sweet way, it pulled out of the car and back to life.

Her poem and her video made me realize, I don't see myself at all- like I  having anything to offer this world. Like me being here, left no dent in that. No affect?

My friend Alex once said that when he grows up, he wants to be just like his children. I so get that. It took a little girl, to get me off the couch, faking another Saturday, and to open my eyes to my WORTH.

I never thought about how I could have died too, or how that would impact my family and my friends. That's shitty of me...I'm worth something, I am here for some reason.

It took my niece coming over and handing me this poem, up top, and playing me this video she made for me, describing me, to SEE that perhaps the world would have lost something by losing me. And what a sweet gift that is.

So Sophie, I never saw those things, these things, but I promise I will try to, if you do too. And take Zoe with you on that journey of light. Don't let her lay blankly on a couch of guilt someday if I'm not here to help. this to me.

I have apologized to the victims and the cops and the paramedics, but I never apologized to my niece, or any of my loved ones. So here goes- I’m sorry Sophie. I’m so full of love for you. And for Tony and Zoe and A.J. and oh my it is my nephew's birthday (Happy birthday Ryan) and my parents and everyone. I almost hurt them (you) too. I’m sorry.

Children teach us so much. Sophie, when I grow up, I wanna be just like you!

 

PS-When I was ready to speak, this was what I shared on social media. Sophie's video is below. God bless you, always. Peace.

I was in a car accident this morning. My car is totaled. If my airbag didn't deploy, I would have broken every bone in my face. My knees are exploding from the front of the car squishing up like an accordion. I wasn't going to say anything out loud, but I feel like it is my obligation. I have to say this-it is all my fault.

I looked down to try to get my coffee in the cup holder, it was spilling, and I didn't realize that while I was trying to save the coffee that the monster pick-up truck in front of me had stopped. AND THERE WERE TWO BEAUTIFUL CHILDREN IN THE BACK SEAT OF THE PICK UP TRUCK. I chose not spilling my coffee over children by choosing to look down.

I was in bad shape, but when I got out and saw kids, I stumbled over to them, my knees buckled...and I just apologized so profusely. I don't think I could live knowing I hurt a family because I didn't want my coffee to spill. Their car wasn't hurt, the kids were fine. The dad or guardian was so worried about them and I think I saw a tear under his left eye. No joke, don't take your eyes off the road.

Don't fumble through your pocket-book for anything, don't turn back to look at your kids, don't check your phone. Don't take your eyes off the road. I could have killed somebody today…a kid! My life could have went one of two ways and I'm so grateful to God that I didn't hurt anyone. So, so grateful that the family is okay, and it didn't go THAT way.

The guy was obviously mad at the beginning, but he saw how distraught I was and he tried to joke they were more concerned about not spilling their drinks. But the irony is that the entire thing was over spilled “something”. For real, don't be an asshole like me and take your eyes off the road. It just took a second, one second and I could have killed someone. So I am taking it as a lesson. Thank God it wasn't the kind that cost someone a life and I'm passing it on now. For real, keep your eyes on the road at all times. It just takes a second. xoxo

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    Karie Anne, Laurie Hoch Adamkiewicz, Emily Birchler and 111 others like this.

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Losing my eyes and finding the light.

  So far the only expression I have used is "losing my legs." It is the basis of a second children's book Chris Bivona and I ran with.  I use the expression a lot.

For some reason, I always thanked God my disease didn't present with Optic Neuritis-the inflammation gets inside your eyes and you lose your eye sight. The majority of the time, it comes back.

This does not mean that it is not scary as fuck to lose your vision.

My only condition to letting my doctor send a nurse to put a pump in was IF I ever lost my sight. And voila, a few weeks ago that began to happen until one was covered; not in black or darkness, more like a sheet. But not bright white. Rather, it was colorless and cold.

Life is doable with with one eye. It almost feels like you lost one eye contact. But then something wonky starting happening to my other eye-which is atypical.

I told who I needed to tell. I work with one of my dear friends. I live with the most devoted husband. We managed. But again, it's one of those things you fake with a trembling heart. But when with loved ones you lie your ass off, save that ONE friend who you can be vulnerable with; the one friend that considers it an honor you share scary shit with them, even if it scares them too.

Never take THEM or LIGHT for granted.

There's always that negative girl inside me that says, "You could be one of the 2% it doesn't come back to!" And then blows a puff of shitty smoke rings in my face just because it can.

So I had a plan, ignore. The more I relaxed and dismissed, the sooner it would calm down and come back. I had to be realistic though, when it got BAD bad, I did not drive etc. When I got home and my husband was here, I slept. It is all my body wanted. This weekend was me, pretty much not moving despite the many awesome plans I had...err..planned?

But it hit me last night, I could read on the television what I couldn't read in the morning. Today, I did not move. I opened my eyes in my bedroom a little while ago and I noticed the light changed. It was moving and shifting, bending across my body. It can caress me as long as it is telling me it is coming back. I'll take it.

So I took these pics. This is what it looks like to be in your room all day. Sick before your infusion. Weeks after barely seeing. Warm light! The kind the aides and abets seeing the world! I am so so joyous to see it, but the thing about light, is that it is NOT ONLY  meant to be seen. I could have no eyes and I could feel it like a motherfucker. It can be heard in a beautiful song as well. I would find it again without sight. And yes, I realize I am tempting the universe's irony by saying that out loud.

I have an innate understanding that my eyes may forsake me, but the light never will. It is called faith.

 

But I figured, for now, but be forewarned, I'd share boring bedridden pictures. They are boring. Although, being bedridden isn't half-bad when you are exhausted.  One is lucky to have a bed when one is exhausted, most have to try to go to work and fake it.  But then you get crazy and start watching things like Forest Gump. I put so much on in the background, as I sleep. But it can be exciting when the light begins to mess with you. When you catch yourself wondering, "What the heck is stinging my eyes?"

When it folds over every inch of your boring, Carolina Blue bedding, and your tired body realizes it. It is a gift. I will take any light that is assigned to me; let it be spiritual (albeit physically dark) or what not. But I can't pretend that didn't scare the bejeesuz out of me. Whatever light we address, it is not to be taken lightly.