Friday, February 17, 2012

Photo-a-Day 17 Scary to Sweet

Apparently I suck at this photo-a-day thing.  Yesterday was pretty much one of those days where I just managed to get through and that was about it.  Marissa had an epic bad day - like probably the worst on record.  Her bad days have thankfully decreased in number thanks to her intervention team, but unfortunately the severity of her behaviors has continued to escalate.  Days like yesterday are a reality check for me; they make me wonder how we're going to handle things as Marissa continues to get bigger and stronger.  She has some behaviors that are very violent.  I spent a solid 10 hours yesterday just trying to keep her from hurting herself.  Add to that the stress of not knowing why.  I can't just write it off to her being a sassy 2 1/2 year old or maybe coming down with a cold.  I have to think about three cranial shunt catheters and four valves, seizure activity, a gall bladder shunt, and the myriad of potential complications that could be happening inside her little body.  My wheels begin to turn, I begin to feel panic and she probably feels my stress, too.  By the end of the day yesterday, I was completely and totally spent.

Today, she is better.  I have no explanation for what was going on yesterday.  I guess it doesn't really matter because it has obviously passed and that means that for now, shunts are fine and seizures are stable.  Today - she is happy and that makes me happy. 


Jessi said...

I'm sorry about your bad day. I wish I had some amazing advice, but I really, I just want to tell you how beautiful this picture is! Wow!!

Kimberly said...

Oh Shannon - my heart just breaks for you and for sweet little Marissa...I can't even imagine the exhaustion and the pain you must live with as you try to help her in the best way you can...not really knowing what is happening for her. I am praying for healing...for both of you.