Whenever Sonzee's seizures start to occur more often and increase in intensity, it is only a matter of time before my tightly woven sense of control quickly starts to unravel. It begins with me reminding myself that watching and waiting is the best course of action. It then turns into a friendly email to her epileptologist, usually accompanied with a video or two for her so she can share her opinion (which 95% of the time is agreeing with my observation and thus giving me a little jolt into reality). I then brace myself because I know her follow up email is going to include a medication increase, and by this point I am only half on board with her suggestion. 1/3 of the time the first boost in medications does the trick temporarily, but the other 2/3 of the time we might as well be syringing her additional doses of water. Then a few days go by and we realize things are getting worse, the emails continue back and forth, the seizures are more often and longer and scarier, resulting in us maxing out all the current medications she is taking. Despite knowing that this will most likely do nothing, we have no choice...right?
Besides the obvious negatives of the medication change not doing what its sole purpose was intended to do, there is now the figurative ledge I find myself trying to balance on as the winds pick up their speed. The moment by moment nerves, the anticipation of the unknown, the fear of realizing that our options are dwindling and even if they were not, we know nothing will work for long. The desire to figure out the trigger(s), is she getting sick? is she sick but her body is hiding it well? is it just CDKL5 in all its glory? I am overwhelmed with doubt, my mommy-gut is confused and challenged, I am numb and do not know what the right answer is. The chaos of the situation fills me to the brim and I feel like I am standing in a room that just spins around me and I cannot find the door. As the room spins and walls close in on me, I am supposed to believe that "I can do this", that "I can handle this, and "that I am strong"...but I am only human.
No matter how many times or how often we find ourselves here, in this exact situation, I have not learned how to handle it properly. I can carry on small talk and keep my feelings inside. I can fake a smile, and make myself laugh, I can put on a good show, but it takes everything in me to make it through weeks like these. I can only take so much of this before I break. I do not understand how this situation is meant for someone like me, because honestly, I am only human.
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