Friday, March 24, 2017


Crying is not really my thing.  In fact, prior to Sonzee I am pretty certain there were maybe a handful of people who I allowed myself to cry in front of.  I like to be the strong person, the one who sort of (pretends to) hold(s) it together for others, the one who likes to stay in control.  Then came Sonze.  The girl who has changed so much about my world and the person formally known as "Randi".  I am not sure if or which version of myself I prefer over the other, but I really miss the me who did not cry as much.

There was a time after I became used to watching her seize that they stopped evoking any type of emotional response.  Yes, it is heart wrenching, yes, it is unbearable to watch, yes, it is absolutely tragic, but it is also part of our every day, and it is our typical.  I remember the days when she was a newborn and I would drive with my eyes staring at the rear view mirror waiting for her to seize so I could pull over.  I now honestly cannot remember the last time I watched for her to seize while driving.  There was a time when she was tiny and little that I would hold her in my lap while she was actively seizing and I would say to her "you are okay", and then one day it dawned on me that nothing about seizing is okay, so I stopped.  I used to get tears in my eyes at the sheer thought of a seizure coming on and then after some time it all just became matter of fact.  For the past couple of months, I became an expert at being able to watch her seize and carry on conversations, or just peak at her in her crib in the middle of the night and then go back into my bed knowing that her alarms will tell me if there is actually something I can do for her.  Maybe it was because I expected them to stop, maybe it was because I was in denial about their forceful return, but this week the tears are back.

I have said more times than I can count that we were warned about the dreaded "CDKL5 toddler years".  I thought I was mentally prepared, or maybe it I was just in some form of denial that it would not be so bad for Sonzee (I really should know better by now, she is Sonzee).  After all, we made it without an admission for anything other than tube replacement for 10.5 months, but then again, she just turned two.  I think a little grace period after she hit official toddler zone would have been nice.  She is only 6 weeks into her toddler years and already her seizures and GI system are becoming worse.  There does not seem to be a permanent fix for either of these, so I have a feeling I am just going to have to get used to crying.

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