Always Connected: Always Protected: Raising a Son With Special Needs

Willie had his first seizure at 3 months. It was a doozy: over 2 hours long. There were many more. Monitoring Willie's seizures has become a hobby,  the positive spin: an obsession, the negative.

For years we carried pagers and the newest of cell phones to be reached if Willie had one of his Status Epilepticus Seizures: the ones that do not end without intervention. Back in those days, you had to go to the hospital and get Intravenous Valium to calm down your brain to stop the seizure. There was always at least a one-night stay in the hospital afterward. Talk about DRAMA.

Every night until he was at least 13, we slept with the Baby Monitor on, to hopefully hear if Willie' s brain decided to go haywire once again. One night we forgot to turn it on, Willie's seizures slowed:  we purposefully didn't turn that monitor on most nights anymore. You had to accept a safety: a complacency that Willie was OK. The Grand Illusion.

But on our recent visit to Willie's Fabulous Neurologist, it seems that seizure monitoring has changed. At the end of the appointment, the Doctor said "never let Willie take a bath alone!"  After 21 years of loving baths, no one has ever said this to us. Yes, it was implied when he was young, but my Man-Boy still loves those baths BUT requires privacy.

After I pulled myself together, I said to the Doctor, "um, what? How do you manage that with a 21 year old?."  It was then he handed me the brochure for The SmartWatch, the newest Seizure Monitoring device.  The outside of the brochure says "Always Connected. Always Protected." Another Grand Illusion? Perhaps, but something that can make us constantly vigilant Moms hopefully sigh a breathe of relief. The perfect panacea.

So I slept on this decision and slept on it and then some more. And in the end, I have decided to skip The SmartWatch. I don't want to be "Always Connected; Always Protected," for I know that can never be true. If the seizures, those big, bad scary ones that do not end, start again, I will discover them: Hopefully. Willie's last one was in the Ocean and thankfully, his teen caretaker figured something was wrong after Willie didn't get up out of that Ocean.

In the meantime, I check Willie more than most Mothers of 21 year olds. The Phone ringing sets off my adrenaline every time, wondering if Willie has had another seizure. If Willie sleeps later than usual, I go in his bedroom and check him. Check, check, check, I am "Always Connected" by my Maternal Heartstrings but "Never Protected," for that is the life of seizures.