Whenever Sonzee goes through months of multiple daily seizures I
do get numb to them. Some of them bother me more than others, but overall
"I am used to them". I feel like when I say that to people I
genuinely believe it. Seizure are part of all the amazing offerings of
CDKL5, well really it is more than that, THEY are the essence of CDKL5 at its
core. However, it is not until Sonzee experiences a break in her seizures
and they return that I realize how much I was fooled into
thinking I was/am used to them. I guess I was not aware of just how
talented my brain has gotten in constantly shielding me.
I have watched this little girl
seize since she was a newborn. I have seen her body move in ways that are
just not normal. I
have seen so many several types of seizures that my descriptions typically
involve some morbid explanation that leave some of her doctors uncomfortable,
but they at least understand what her body is doing based off my words. I
always try to accompany my descriptions with a video, but it is obvious that
even the professionals find it uncomfortable to watch. Which makes me
realize just how not okay this situation is, no matter what my brain tries to
convince me of.
There should not be any parent
who must "get used to" witnessing seizure activity in their child.
This should NOT be an effect of a disorder. My brain should not have to find a way to cope
with this. It just should NOT be. I do not think I will ever understand
why the hallmark of a CDKL5 mutation must be the most volatile atrocious
experience you can possibly watch your child go through. My brain clearly
has limitations with its capability of comprehension in this department.
I guess I will just have to give it a couple more days and I will be back
to the state of numbness that I get accustomed to and prefer.
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