Friday, August 26, 2011

{un} normal.

I'm glad that we posted the VLOG.  I'm glad that you got to see us talk about random nothings and laugh a little.  Because to be quite honest, I feel like even though this is my own blog--hearing about Mabel and the trials of our every day might be old hat. 
I mean I could have based our VLOG around the fact that it is 12:16 am and Mabel has been crying for almost 2 hours straight interrupted by a huge massacre of vomit and then resumed by more crying.
A baby crying is one thing. 
A baby crying who doesn't like to be held or consoled because her body can't tolerate it is completely another.
I could have talked about how scared that makes me and how she is rolling from side to side in my bed because I'm far to fearful to leave her alone for even a couple of minutes. 

I could explain how when she takes her seizure meds at night, often she throws them back up.  I cannot gauge how much she has vomited so on nights like tonight, as she gets more worked up and the longer she cries--the more she seizes.  It's visible and aggressive and sometimes it is quiet and calm.  Either way, it's the middle-of-the-night episodes that are not talked about often enough.
It's the fevers that could mean nothing or the ones that could mean everything that are hush hush...
What else is not talked about enough?
The fact that the silly moments, like the few in our VLOG, are rare.  And even in the midst of the silly--so much of it is forced.  I see a different 'me' when I watch that video than the 'me' from 7 months ago.  This me is slightly damaged, a little less playful and a lot more confident.
I could have spent a few minutes talking about the moments when I am broken on the kitchen floor, pulling at my own hair and sobbing to the Lord for my baby. 
Or the moments when Daniel & I fight and fight and fight some more...only to realize that this process is different in each of us and the loneliness expands.
I could talk about how my every thought, action, breath is consumed by Mabel.  I cannot eat breakfast, take a phone call, go to the store, enjoy a walk, play with the kids, kiss my husband--
without thinking about Mabel.
and the word 'disease.'
Do you know how dirty of a word that is?  It feels dirty.
It feels decrepit and outcast.
It feels raw and lonely and bare.
It feels like looking over at your {finally quiet} baby and watching her arm twitch and tremor as she is trying to fall asleep.  It's watching her finger do the same at a random moment and knowing that you have no way of stopping it--and neither does her own brain.
It feels like no one gets it. 
Not these late, sad, scary nights.
Not these long, hard, emotional days.
No one gets it and very few attempt to try.
It's just she and I.
Me & Her.
So I could have vlogged about that.  But I chose silly and normal because that is
for everyone else involved.
This...this 12:25 moment in my big bed. 
Is anything but that.


Anonymous said...

Ramee..I do know the word disease. We are more than conquerers through Jesus than that dirty little word.
I know you probably get sick of ppl telling you that and it gets tiring hearing that..but after the word cancer was given to me...nothing has given me more strength, courage, or character.
I'm praying as always, and am here if you need anything.

brandy said...

Praying for you!! ((hugs))... I have no words.. except my heart hurts for you and things that are uncontrollable.. :( I'm praying for you and your household.. don't ever feel like you can't continue to blog about what you are going through.. it gives people like me the ability to pray specifically for the situation and what you are dealing with!!!

brandy said...
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