Sunday, November 13, 2016

Leap of faith

There are so many challenging parts of having a child with CDKL5 that I find myself starting a post with "one of the most challenging parts of being a parent to a child with CDKL5" more often than not.  Yet again here I am finding no other way to start today's post...other than...one of the most challenging parts of being a parent to a child who has a CDKL5 mutation is constantly having to take leaps of faith.

There is really no other way to live this life without constantly having to throw your hands up in the air saying "I quit" and just giving in to whatever is instore.  Sometimes you get lucky and the outcome "works in your child's favor", more often than not, you are left angry that you, your family, and especially your child are in this predicament, and that you actually felt the slightest tinge of hope that things would "work out".

It is usually after you have exhausted the 10 most common of solutions that you allow yourself to go to the next level of solutions that you normally wouldn't ever consider, but now you really have nothing to lose.  The sad part is, at this level of options there is always something that is being sacrificed, but it is the lesser of all the evils your child is facing.  It is so infuriating to be placed in this position, but then again nothing is inviting about holding a CDKL5 parenting position.



So here we are...again...being faced with making a decision that doesn't come without a consequence but if it is successful could prove to be one of the MOST beneficial outcomes for our little bear.  The balance of the side effects of her new medication weighed against the possibility that her pain could become obsolete makes it a "no brainer" at this time.  So with the notion that this could be Sonzee's saving grace, we again hold our breath and take another leap of faith.

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