What epilepsy looks like...

Want to know what life is like with epilepsy?

It's trying to remember which medicine to take at what time and how much of each of the anti-seizure medicines to give now... the amounts are constantly changing.

It means making sure that both seizure monitors are on and connected every night... then getting up again to make sure they are still connected... then getting up again...

It's being woken up by seizure alarms at 3:00am, grabbing emergency medicine, ready to inject it.

It's watching your child shake out of control and counting down the 4 minutes before you inject the first emergency medicine.

It's desperately trying to get a hold of a doctor to let them know that your child had another seizure and trying to figure out what to do next.

It's deciding on which of the side effects will be the easiest on your child knowing that if you decide on the wrong medicine, more seizures will come.

It's sitting in his bedroom, just like right now, listening for a seizure to happen when there are so many other things that you need to do.

It's trying to explain to your child that they aren't sick when they take so much medicine, but not knowing how to say they aren't going to get better.

It's the strange looks that people give when your child doesn't speak well due to epilepsy and damaging seizures.

It's watching your child try to be friends with other kids and then seeing your child's disappointment when the other child walks away because you can't speak well. It's the pain of what you just saw and wishing your child didn't feel alone and had a friend who could understand.
 
It’s the small victories though that keep you going.  It’s the smile in the morning and the funny things they do that make you keep trying.  It’s hearing your child say something a little better that keeps you encouraged.  It’s the little steps forward after taking so many steps backwards that give you a little hope.  It’s knowing that Jesus created him just the way he is and just for us to love and accepting him just the way he is.