As much as I would like to think that having Sonzee doesn't impact us much more so than if she were healthy, it's simply not the case. My priority is always around the health of my children, but especially on little bear, because the slightest cold can make life hell. Ensuring she stays the healthiest possible and that her seizures stay at bay is, in reality, not even something I have any control over. Yet it doesn't stop me from focusing my attention on both of those things daily. I can tell you from experience, it's nearly impossible to focus on much of anything else when you are consumed with the return of seizures, but I can also tell you it's impossible not to be consumed by them.
I always took her little retreat from seizures with a grain of salt, never once fooling myself into believe it would be permanent. (In fact I had given up any hope that she would even get an extended break from them-so I'm thankful for the time she had). The fact that they are back doesn't surprise me, nor am I devastated, because it happens. CDKL5 happens and this is just what comes with the mutation. However, what I didn't miss and the thing I dread the most is the uncertainty that comes with the seizures. The unknown triggers, the guessing game of when they will happen, the attempt to plan a day when odds are it will NOT go that way, the daunting task of considering medicine changes, wondering what or if anything will help them, not knowing which decision we make will be the one we wish we had not. All of the above is what I HATE in addition to watching her seize, but lucky for me, it comes as a packaged deal.
I know when seizures are around my ability to focus and be anything other than physically present is gone. Older kids miss homework, activities are put off or missed, my patience runs thin, my ability to put up with anything is gone, I am simply in a constant state of numbness and just functioning to survive. So with the warm welcoming we have received from the seizures this past week, I should probably just accept the fact that my best is just not going to be good enough in the weeks/months to come.
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