Sunday, February 13, 2011

The blog post.

I will not apologize for my status. I know you think it was a bipolar moment, and you know what, maybe it was. But I will not apologize for it.

My status wasn't about anyone in particular so I don't know why so many are taking it as I trashed them personally. I have never once, and will never trash a CHD parent. Or belittle what they have gone through. Because I do know, for them it is hard. I don't know how hard, and I can't imagine what it's like to have a child with a fatal illness.
But I do know what it is like to live with one.

I am not looking for attention. Even though I know that what you all think this blog post is for.

I am a CHDer. And your right, I was too young during my first surgeries to remember them. But I do remember the doctors appointments. I remember all the blood draws. I was terrified of needles. I remember waiting in the waiting room, hearing other kids crying, knowing that I was next. I remember the echo techs who pushed to hard, and made me cry. Knowing its what they had to do. But even though its something that needed to be done, that doesn't make the pain any better. I remember waiting in the ex rooms. Man I hated them, it was always cold in there, and I always had to take my shirt off. I hated having to take my shirt off. I hated the waiting. The tests. The horrible tasting medications.

I am also bipolar and at the moment, have a concussion. Do I complain? Sometimes, but it is my facebook and I can post whatever the hell I want.

Sometimes I don't know how to deal with this stuff. I don't know how to deal with the bipolar, I keep upping my meds and it doesn't seem to help. This post concussion syndrome is so very new to me. I don't know how to deal with it either! So do I vent on my facebook? Yes sometimes. Because I gotta get it out some how.

What I'm trying to say is this. I am not looking for attention (though I know you'll think this is my way of trying to get it. I'm not stupid) I post my feelings because it is MY facebook. I have a right to my opinions. I am a survivor, I am the one living with a life threatening illness. I am not going against any parent or research. The fontan was new when I was a baby, now its a common thing. I helped with that research! So how can I not be for it? I am not belittling what a parent goes through either. I know its hard on them.

I make the pictures/videos for awareness and awareness only. I do not have any hidden motive.

So trash me all you want. Your just making yourself look bad.

1 comment:

  1. Jessica, per usual, I noticed the hubbub after it was pretty much all said and done.. I'm sorry that you were so attacked.. or felt so attacked. I'm sorry for the CHD moms who reacted personally.
    I think we are ALL working towards a common goal and it just gets so hard sometime.

    I have said before, I'm not sure I would voluntarily be a piece of this "CHD world" on FB and online if Seth were stll alive.. I dont' know if I could handle the unsurety with all the bad things happening all around. I understand how those emotions can get out of hand in these situations.

    But Seth's not here and I am. And I know YOU and I love you. Big hugs. Hangin there