Tuesday, September 6, 2016


Waiting.  It seems to be a majority of what I am doing these days.  Waiting for appointments, waiting for offices to call me to schedule said appointments.  Waiting for tests then waiting on those results.  Waiting to start medications, waiting to wean medications.  Waiting to see the outcomes of all of the playing we do with her medications.  Waiting for her skills to emerge and hoping that none of them disappears.  Waiting is not my strong suit by any stretch of the imagination, but the absolute worst waiting of all...waiting for the damn seizures to return. 

I feel like Debbie downer sitting here waiting for the shoe to drop, but let us be honest and realistic...it is bound to happen.  She has been spasm/seizure free for 18 days and 3 hours as of this posts composition.  This is by far her longest period of freedom since her last round of spasms that we treated with high dose steroids.  I have experienced this waiting game before.  It was as soon as I started to think we might have outsmarted the seizures that they rudely showed back up at our door, not welcomed.

It is challenging not to let the fear get the best of me, yet I know it does nothing good for anyone.  So while I am part of this awful waiting game, I try to enjoy and cherish every moment.  I try my best to balance between encouraging little bear to gain new skills while being skeptical that I might have pushed her too hard, which might trigger them back.  I try to video every smile and giggle so I have them documented and ready for the future when I have to watch them as reminders of what she is capable of while also viewing them to keep my hope.  I try to surround her with the things that make her most happy because this is the time she can enjoy them the most.  

I really dislike this part.  The part where I am most excited about how far she has come and so fearful that she will lose everything she has worked so hard to gain.  This for me is that part of the coaster where the tracks are hidden and it is uncertain which way the ride will continue.  Will we keep moving steady, take a slight climb, or drop 40 mph downward with little to no warning?  Regardless of the way this portion of the ride will end, one thing is for certain...my harness is pulled snugly against my chest.

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