It's 10:15 on Sunday night and I am sitting by my desk at home. It is the one night a week I allow myself to sleep at home when Sonzee goes inpatient, specifically because it is Sunday night. Not much happens on a Sunday night at the hospital, so it is "safe" to let Sam stay. I only sent one reminder text to have him make sure the nurses wore their masks when they changed the tubing on her central line, so I think I am doing well. The washing machine and dryer are running their cycles, there are lullabies playing in the kids rooms, and everything is calm; except I have already stopped myself twice after I swore I heard Sonzee's seizure sounds and I felt my stomach fall.
This happens every Sunday that she is inpatient and I sleep at home. I don't understand why my mind cannot take even a few hours off. Once I hear the sound, the panic fills my body and it takes so long for me to talk myself down. My thoughts start to bounce all over the place. I sent Sam a text and of course she's snoring away with some soft music playing in the background, calm as can be, so that should give me some comfort. Yet I feel like it is never really about the "seizure sound" when she isn't around.
The "seizure sound" is merely a lightning bolt that matches the internal struggle of chaos I feel over every admission she undergoes. Most probably because they are never straight forward simple admissions. They are always weighted and involve "small" but really massive changes. Her admissions are the times I am unable to ignore the medical complexities that are very much a part of her daily life. I have no choice but to actually face reality when she is in the hospital, and I would much prefer to stick on my smile and say "she's okay", "she's Sonzee", or some other simple pacifying phrase. I dislike the nagging panicky feeling that accompany the majority of the situations with her life, and I really dislike when there is no way to avoid dealing with them.
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