TIMES WHEN MY SON'S EPILEPSY HURT ME
But didn't destroy me
- •When he got diagnosedThird grade of elementary. A time when our life was already full of transitions. I think at this point I thought there was no new challenge to face. And then his teacher talked to me about some "things" she was noticing. As a teacher, I had seen absence seizures before. So when she started describing these "things" I said "I think you're describing absence seizures". She was a close friend, but as a teacher, all she could legally do was tear up and agree he should go to a doctor.
- •When people didn't believe meDuring the early stages of his diagnosis, I faced a lot of skepticism. Did people think I was having him tested for epilepsy to get attention? I had people flat out tell me that just because he was having seizures didn't mean he had epilepsy (and yes, yes it does). Or that if I wanted to believe that's what he had, then they would go along with it.
- •When people couldn't face it"It's not that bad" or "at least it's not cancer" or "it won't change your life that much". Or the one that hurt the most from the person I wanted the most support from: "don't let it affect you too much". I guess denial is easier to deal with than the actual illness? But it was very painful and lonely.
- •When I had to be strongIt was scary for my son. It was scary for his sister. Their dad has never been one to talk about things, so it fell to me. I did my best to put on a brave face with both of them. And it was the hardest thing I've had to do as a parent. I cried a lot in the shower, cried a lot to my supportive friends. Didn't sleep at all for fear he would tumble down the stairs at night while having a seizure.
- •When we had to change everythingNo more swimming, bike riding, roller blading- basically everything we did every day. None of these things could happen until his medication worked. See, absence seizures aren't easy to detect. So my son could have been riding his bike, have a seizure, and continue to pedal. He would have been unaware of his surroundings and not heard me screaming if a car was coming at him.
- •When he went to schoolOf course I trusted his teachers. But being one myself, I know you can't focus your entire energy on one child. So I was scared, worried. I wanted to home school. He wouldn't have it, so I had to stay home and worry. We had our scary moments (he got left on the playground and locked out of the school) Because he had so many seizures, I had to stop teaching. And that was hard. But working and having to leave all the time was harder.
- •When kids mocked him"Why do you space out?" "How come you can't go swimming?" "Dude, what's wrong with your head?" I can't even repeat some of the other things that were said to him. It's still too painful, and it still goes on. He handles it with grace and courage, but I'm still learning how to deal with it.
- •When we found his leisonThere is a lesion in his brain, which means he will never outgrow epilepsy. Unless I'm willing to let the doctors operate on his brain. (I'm, hello, it's his BRAIN!) And it could paralyze him, make him not be able to talk, turn him into a vegetable. So the lesion is staying.
- •When I've been doubtedPeople thought he shouldn't be on medication. People thought I should feed him a different diet, not let him play video games (they honestly think this caused it) People also thought I should "just" do the surgery. People thought I should have known he was sick "I always thought you were such an involved and observant mom, I guess I was wrong" Needless to say, these are all people that are now in my past.
- •Every single dayIt's under control with medication, at least today. If he grows another inch tomorrow (he's been averaging six inches per month) we have to adjust the medication. So it's a day to day condition. We have to adapt and not take anything for granted. When asked how he's doing I usually respond honestly, "he's good, right now". It might sound negative, but it's actually the best news I have to give. And my son, his sister and I, have all made peace with that. Epilepsy doesn't win.