|For a person like Calvin who has
poorly controlled seizures, especially grand mal seizures, the
risk of SUDEP is one in 100 over one year. Other risk factors for Calvin include his nocturnal seizures, his developmental delays and his onset of epilepsy at a young age.
SUDEP is not well understood, although current research indicates it may be related to heart rhythm problems and/or respiratory problems during a seizure. So although we listen to a baby monitor at night and can hear Calvin's grand mal seizures it is possible we may not hear a problem related to SUDEP. The fact that Calvin's seizure medicine can cause respiratory suppression is an additional risk.
Knowing this about my son's condition has made me acutely aware of his mortality. I still feel like a new mother who repeatedly checks in on her infant to see if he is breathing, which I do every night, several times. And though I dread Calvin being suddenly whisked away from me, in turn I very consciously relish each minute that we have together. I lavish him with caresses, tickles, hugs and kisses. Mornings we linger in bed and he puts his little arms around my neck, pulls me close and squeals with delight. These tender moments are pure sublime and allow me, if just for a time, to forget the rest.