Ever heard of SUDEP? It stands for Sudden Unexplained Death in Epilepsy. It is similar to SIDS in that it is unclear as to the actual cause of death.

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 use of more than one anticonvulsant medication, 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 in an effort to hear Calvin's grand mal seizures it is possible we may not detect a problem related to SUDEP. Regrettably, 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.

And just so you know, this ain't no April Fool's Day joke, but I sure wish it was.

Please share.
Give to cure epilepsy: http://www.calvinscure.com

photo by Michael Kolster

No comments:

Post a Comment