Friday, March 25, 2016


I can remember back to the 90's when TLC's song "Waterfalls" came out.  I am pretty sure I had a cassette version of their album and had all night slumber parties singing and dancing along to that song as well as their many others.  I have been sitting here this morning thinking towards the future with Sonzee; her constantly changing medication schedule, overall health, and potential seizure control.  The lyrics of the song managed to find their way out of my mental storage.  It always amazes me how much randomness is stored in the recesses of my brain.  Even though this song was not written with Sonzee bear in mind, the lyrics ring so true to me.

Don't go chasing waterfalls
Please stick to the rivers and the lakes that you're used to
I know that you're gonna have it your way or nothing at all
But I think you're moving too fast
It continues to be extremely easy to get carried away in the extreme tidal wave that is CDKL5.  If my worry isn't directly related to seizure control then it is her overall development or health in general that leaves me with questions.  I am always trying to be one step ahead of the potential madness, always thinking in some way I will be able to outsmart it.  I don't know why I feel I am a match for a genetic anomaly.  Biology and science in general has NEVER been a strong suit of mine.  What I know about genetics has only been brought to my attention in the last year.  There is absolutely NOTHING I can do about her condition.  As a parent this has got to be one of the WORST things.  Knowing that no matter what you do, in this case, it won't ever be good enough.  It can leave you in a constant state of panic, a constant state of worry, and a continuous state of feeling out of control.

We are always trying to figure out what the best medical cocktail would be for Sonze.  It is a fine line to balance seizure control with quality of life.  We want to be aggressive to give her the best chance to be happy and develop as well as she can, but at the same time not put her into a medical coma or expose her to too many harsh side effects.  It is a constant state of weighing pros and cons.  It is a constant back and forth of wondering if what Sonzee's current state is, could actually be made better by a "simple tweak" or if we are only going to make things worse.

It can be rationalized that whatever change that is being fabricated in your head is the better one.  It is so easy to do the "if we do this, this will definitely make a difference in a positive manner because what we are currently doing isn't working".  Sometimes you can find yourself so caught up in "Fix it mode" that you can't see that what you have is actually really great. Only after you implement the change do you realize that not all changes are for the best.  Changes can lead to an unexpected and unwanted negative cascade of events that leaves you thinking, "what did we just do?"  I am not one to regret a decision, but regardless of regret, it is still an awful feeling when you think "maybe it wasn't really broken...maybe we shouldn't have attempted to fix it".  I know that in our situation we will always find ourselves faced with these types of situations.  It will be a constant battle within ourselves to figure out the appropriate time to "jump ship" on whatever course of action we are dealing with.  But, it is always good to have a gentle reminder to "not go chasing waterfalls."

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