The clock ticks and I watch the second hand as it makes its way around. It is after midnight and I am wide-awake listening and watching her breathe. I cannot remember the last time I slept more than an hour or two straight without jumping straight up in sheer panic.
Having a child with a seizure disorder will impact you in ways you never knew were possible. That startle you experience when you hear your baby cry out, or any baby for that matter, because it reeks of the sounds your child makes at the beginning of her seizure episode. The fear you carry with you daily, like a heavy weight, just waiting and wondering when the next seizure will take place. It is awful. It is scary. It is my life.
I do not remember how things were prior to Sonzee, but I know things have changed. I have lost the ability to differentiate between what is "typical" for any baby, and what is specific to having a child with special needs. I know I used to sit and watch my oldest while she slept to make sure she was breathing. I still periodically pop into each of my kids rooms when they sleep to ensure they are covered and breathing. That is no different. I do not remember how my other kids woke up from naps. I know I did not sit and wait with baited breath wondering if it would be accompanied with shrieks, limb extensions, holding breath, and a red face.
It is odd the things you become accustomed to when you encounter a new normal. The shrieks, red face, limb extension, and breath holding are what I now expect. When Sonzee wakes up by simply opening her eyes and looking to the side, I still panic for a second wondering if this will be a new type of seizure. When she smiles or makes a giggle sound, my first thought is she is having reflux, my second a seizure, and then after all the other CDKL5 norms are eliminated do I then relax and realize she is just expressing herself. Similar to a soldier on the battlefield, the scars from the previous events remain fresh and raw permeating into every subsequent action, thought, experience. I am guessing this is just another bump in the road, another concept I will have to learn to wrap my head around, another new normal I will have to add to my long list of things I need to accept.
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