I haven't been able to get the word suffering out of my head recently. It just follows me around like a real-life version of Jiminy Cricket, constantly there, unable to shake, just lingering. Every time I watch her seize, when I see her confined to a chair, when she is laying in the same spot on the floor, as I lift her from point A to point B, essentially all. day. long. The mental follow up thoughts are why, and for how much longer? It really is such a delicate place to be, unable to comprehend life without her in it, and wondering when G-d will end-all of her pain and suffering so she can actually be able to truly rest.
I often wonder what she must be thinking and experiencing herself. What does life look like through her eyes? We don't get the opportunity to know her thoughts or feelings. We assume the majority of what she is communicating. We make unthinkable decisions on her behalf. Her body does the same thing on repeat daily, with only stopping if she is sick. Days full of seizures and the aftermath that they bring. Medications that I am sure cause side effects she doesn’t even complain over because it is her norm. She is forced to experience constant seizures that are unable to be controlled and unwilling to give her an opportunity to truly participate in life.
It breaks my heart to watch her suffer like she does. It breaks my heart that we have failed to bring her any type of relief no matter how much we have done or how much we have tried. It breaks my heart that there is not a single thing we can do to stop this vicious cycle of attempting a remedy and failing miserably or sometimes less miserably. It doesn’t help and I don't want to be told: "she doesn't know any different" because that does not make it okay. It does not make it justifiable. It does not make me feel even an ounce better. And most importantly, it does not reduce any of her suffering.