Since I know you all rarely see a picture of me.  I am PROUDLY behind the camera 98% of the time.  I will more than gladly stay there for the rest of my life!  I do have some family pics from the beach that I plan to proof soon but they are on my laptop and I have not had the energy (or the drive space.. imagine that an entire TERABYTE is note enough drive space) to transfer them to my main drive.  So… since I know many of you are my “bloggy friends” and have never met me in real life… this is me.  Brain ninja’ed and all.  I am a red haired, freckled, no-one’s step child   Anyone who has known me for any amount of time knows, that I am a straight shooter.  I say what I mean, and mean what I say.  I don’t really know how people would describe me to others but honestly, it doesn’t matter as long as they would call me mom, wife and child of God.

So back to the title of the post… I was asked yesterday… “so how are YOU feeling today?”  It is the now ominous ELEPHANT in the room that everyone knows is there but everyone is afraid to say something about.  For fear of what I don’t know.  I mean do you think if you mention it I might fall down and stroke right in front of you?  No.  I am not dying… I am just living with a brain that is not performing to meet my standards… shall we say.  LOL  I will likely live to an old age, in a lot of pain with a nice small disability check.  Sweet right?

I went from being a 26 year old wife and mom to three who was expected to hold up the weight of the world (almost literally at times) and do more than any human should (MOST literally at times) to now a person whose husband has to lay out her pills because he is afraid if he calls her and asks her – she will honestly not even KNOW if she has taken them.  This is the same person who has scheduled and dosed her daughter with medications, catheters, feedings pumps, tubes, heart meds, IV’s, PICC lines, Broviacs, up to 37 doses a day around the clock without a second thought.

In talking to a friend on the phone, she said to me… “well I didn’t expect to hear anything but YOU… normal Amber being just what you always are… never defeated… just so YOU.”  Its true.  I will NOT be defeated.  I am not upset by this honestly, well most days.

What am I?

I am tired.  My brain exhausts my body so that I physically have the inability to function some days.

I am frustrated that my SELF still wants to move and function at my normal “super” human rate but my brain and body can no longer keep up and often times I find myself trapped inside and becoming extremely pissed off.  I search for words that just aren’t there.  I start sentences that I cannot finish.  I draw blanks on important things that I should know like my kid’s BIRTHDATES.

I am a bit angry.  Angry that I cannot do the things that I used to be able to.  Angry that I am failing… everyone.

I am in pain.   A lot of it.  All the time.  period.

I am absent.  Often.  With my seizures being so frequent I evidently have times when I am just not “here”.

I am no longer in “control”.  Which is scary for me.

I am scared.  On so many levels.  I cannot begin to tell you how and why.  That would be a whole post in and of itself.

I am sorry.  I am sorry to my family that I have become such a huge burden already.  I am sorry that my kids will not have the mother they deserve.  I am sorry for the sacrifices that my amazing parents are making and my husband.  I am sorry for so many things that I cannot control and wish I could.  It just sucks to be sorry… really it does.

I am over it.  I am ready to move on.

I am above ALL a fighter.  My daughter laid in a hospital bed for a year’s worth of days and she taughter ME how to be a better person, mother and daughter.  She changed me.  She is standing here beside me playing her Disney “cd” player and I wonder if she knows that some days SHE is why I get out of bed.  If she can do it…. I can too.

So when I am asked… “How are YOU doing?” from now on… I am simply going to reply… SHE won… and I will too.

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