Wednesday, August 19, 2015


As a parent we don't want our children to be in any pain, suffer or face any problem.  No matter the situation, it is our natural inclination to jump right in and try to find a resolution.  In nine out of ten times the solution is easy.  A bandaid for a cut, a tissue for tears, antibiotics for a cold, a hug and a kiss, or a gentle pat and the words "you're ok".  Then there are those times that aren't that simple.  When you have a toddler that you can't understand and you have to perform what feels like a triathlon combined with a doctoral program just to figure out the best way to console him/her.   You have tried the bandaids, the hug, the kiss, but nothing seems to be working so you offer a sippy cup and randomly they have no idea why you look so frazzled because all is right in their little world.  

With every decision we make we are doing it with our specific child in mind.  How can we make his or her life better, more productive, just plain easier?!  Sometimes our choices are exactly what 99% of other moms and dads would do.  Sometimes our decisions come with outsider opinions or bias.  Sometimes we just don't simply care what others have to say because we know what is best for our child.  

A lot of factors can influence our decisions.  We may feel judged, think we are judged, or be fearful of the judgement that may come along with our choices.  We may let that fear determine our course of action.  We may be nervous of the outcome, we may be scared, we may  simply be unsure of ourselves, and full of doubt.  So what then do we do?

Growing up my mother would always say, "you make the best decision based on the facts you have at the time" (I may have mentioned this in a previous post).  I like to refer to this quote on a daily basis when it comes to our decisions for Sonzee's medical care.  However, lately I have found myself at a crossroads.  

We all know the controversy behind medical marijuana and its impact on seizure control.  If you know Sam you know if we never had a Sonzee with a mutated CDKL5 gene we would never be entertaining the use of marijuana.  If you have talked to Sam recently he will be the one to tell you he went to Harvest of Tempe and we have Charlottes Web oil (from the documentary) sitting in our fridge.  He will be the one to tell you it is actually me who has not given the green light.  Why you may ask?

1. It would mean adding a third drug to her daily routine
2. It would mean we would have 8 medication alarms throughout a 24 hour time period
3. It would mean she might have seizure control, but it's not a guarantee.
4. It would mean we have now used our last gun in the arsenal (without using other pharmaceutical medications).

While our neurologist is extremely excited, I am petrified.  What will people think of us as parents? Why do I care? What if we use it and it doesn't work? What if it does? To quote one of the most famous antagonists of Disney, "life's full of tough choices, isn't it?!"

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