This, too, shall pass

It is 3:23am and little bear finished her seizure about 5 minutes ago.  She is back up to the 4ml dose of Zonisamide we attempted to give her last week while in the hospital.  We are trying to give this drug a chance, get her to a therapeutic level and then judge, but my gut says to jump ship.  I know part of that feeling is out of fear and the complete loss of control we have found ourselves in.  The other part of me believes whether it is now or a month from now, Zonisamide is not going to be her saving grace.

So here we are, here she is in this situation, and here I am back to my middle of the night posts and waking up to alarms and seizures.  I am angry and sad.  This is NOT what I want for my two-year-old, this is NO way to live, this HAS to stop.  But how?  Where is the magic?  Where is the cure?

I am doing my best to not play the "what if" game, to not analyze our decisions with a microscope.  I am telling myself that this would have been the outcome regardless of stopping Sabril, that this was all in the plan because we are in the dreaded toddler years of CDKL5.  That we are not responsible for her current situation.  I do not know if this is 100% true, but I also do not know that it is not.  I know I should try and be open minded.  As her doctor reminded me last week, we are running out of options, so I really want (need) this medication to work.

I am so beyond broken for little bear.  This is absolutely horrific to experience as a parent.  I am hopeful that we will eventually get her seizures under some sort of control, until then, the message I received in my bath bomb before bed is going to be what I make my brain focus on every time I close my eyes.

3am

It is 3:00am and little bear and I are awake.  Lately this has become our middle of the night routine, although the time varies.  Tonight it has been since 2:19am that I heard her breathing change and she made a noise, the type that makes me second-guess her seizure freedom so I run to her crib.  False alarm, little bear is only participating in one of the other fun-filled side effects of having a CDKL5 mutation, sleep disturbances/all night parties.

I put on her red ladybug starlight figuring that since she is awake she might as well take full advantage and work on her vision (and hoping) this will keep her from wanting me.  The time passes and her breathing changes, I of course get up every time (reluctantly because I am scared each time will reveal that in fact she is seizing) and each time (thankfully) she is just chewing on her fingers or sucking her thumb.  Regardless of how many times this continues I cannot seem to shake away the worry and feeling from the pit of my stomach.

As usual in our house both of her sisters seem to be woven into her and of course it has turned into a full on party with little girls calling for us or wanting to cuddle.  (Thank g-d little man loves his sleep far too much to join in).  I have gotten all three back into their respective beds, but I know for sure I will not be back asleep anytime soon.  It is 3:11am, little bear has now kicked off her blankets, and she wants me to put them back on.  I tuck her in (again), give her head a rub, and a kiss, and turn off her ladybug light telling her it is sleepy time.  She literally chuckles at me, makes a little protest, but obliges.

Back in my bed I listen to her breathe.  I know no matter how content and quiet she is I honestly will not fall back asleep until she does.  As if sitting here awake will change whether she has a seizure or not.  I have decided that no matter how long this streak continues, the further in we get, the worse the heartache will be when it is over.  I have tried to create ways to protect my heart, but I know there is not anything I can do to cushion the potential blow.  It is 3:17am; she is not showing any signs of wanting to resume her slumber, despite her bodies attempt to let her know by yawning that maybe sleep would be a fantastic idea.

The worst part about her middle of the night shenanigans is my mind has nothing to do but run wild and free, and it is exhausted so you can only imagine the places it goes.  The silence is a conniving place, you would think it would bring about peace and contentment, but after almost an hour, I have still not recovered from the initial panic and fear her wake up brought me.  It is now 3:27am, every so often, she starts to talk or she gets ultra-excited and starts to kick her feet, I would love to know what she is thinking.  One thing is for sure it has nothing to do with going back to sleep.