I wonder what it is like to be a child of a parent with epilepsy. We have tried to talk about it with our now five year old but we can’t tell how much he really understands.
We have been fortunate that Ryan has not had a seizure in front of our son. Trust me, Ryan has had seizures in the house while our son was home but luckily our son was sleeping, eating, or could be distracted at the time.
Our son also knows that daddy has to be in the hospital every now and then because “the doctors are trying to see why daddy’s brain is making his body do things he doesn’t want it to do.” Our son also knows not to play with toys that have flashing lights in front of daddy (although we try hard not to let any in the house) because the flashing lights aren’t good for daddy’s brain.
Often I watch my boys rough housing (as boys do) or I listen to them working on a project together and I’m overjoyed. It is so great to watch and hear them bond. It makes me happy to know that Ryan is feeling well enough to be interactive and playful.
Yet there is always the voice in the back of my heading making me worry that it will be that moment, that it will be that very first time, when our son experiences Ryan having a seizure. What will our son do? What will I do? What effect will it have on our son?
As I said, we have been fortunate so far. I hope that we can shield our son forever but I’m sure that’s not possible.
If there is anyone out there who is the child of a parent with epilepsy, I hope you will open up to us with tips, stories, and support on what we should expect and how we should approach our five year old son about this very serious issue.