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It’s epilepsy awareness month. I wish I was organized enough to come up with a thought for each day to share – instead I’ve made this list of 20 thoughts I’d like to share. My list isn’t super-scientific, and it’s filled with my own opinion. I hope it can be a conversation starter if anyone reading this wants to know more about our experience with epilepsy.

1. Epilepsy is random. Seizures happen, and most of the time there is no way to predict it. We know that Grace has more seizures when she is waking up (it’s a big transition the brain makes when going from sleeping to waking, so more can go wrong), when she is tired, when she is sick, and when she is stressed. The thing is that when a seizure comes, we just have to wait for it to stop before we can move on. Sometimes we are late. Sometimes dinner gets cold. (Sometimes I want a sign when I walk in late to places that says “Grace had a seizure and we were delayed.”)
2. People can have seizures but not have epilepsy. You are diagnosed with epilepsy when the seizures are recurrent and non-provoked.
3. For some people with epilepsy a helmet to protect your head is a must! For us, we never know when a seizure will happen, and we know her head can go crashing towards the floor at great speeds. So, Grace wears a helmet. Seizure helmets don’t however have to be brown. Grace’s first helmet was an ugly brown color. The man who ordered it didn’t give us a choice. In my opinion if you have to wear a helmet you might as well have a little fun with it. That is why Grace’s helmet is pink.
4. Epilepsy is a central nervous system disorder.
5. Infantile spasms (which was Grace’s original epilepsy diagnosis) is a rare form of epilepsy. It is considered “catastrophic”. Because it is so rare we quickly learned that we’d have to leave Des Moines to get Grace care. It took us two weeks to figure out what it was for sure. I’ll never forget our pediatrician looking at the small screen of our digital camera at a short movie we’d taken of Grace “crunching”. We had to wait 24 hours after that for her first EEG to confirm what we suspected.
6. An EEG (electroencephalogram) is a test that detects electrical activity in your brain. It takes about an hour to get it set up. Because they have to glue sensors to Grace’s head (and she doesn’t like people touching her head) it’s not a very fun process. Then they record your brain activity for about an hour (or longer). I have prayed for Grace to have a seizure more than once when she is hooked up to EEG wires so that the doctor can see what is happening. I have lost count of how many EEG’s Grace has had.
7. Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s combined – yet receives fewer federal dollars per patient than each of these. (cureepilepsy.org)
8. Epilepsy doesn’t just affect a person, it affects a family. Grace’s epilepsy affects much of our family life. Not all in a bad way. It requires flexibility. Working together. Awareness. Travel. Multiple trips to Target for meds. Patience. Meetings. Paperwork. Emails. Home health nurses. Therapy appointments/exercises. Space in our home for all the medical things that we need for her. We are trying not to let it hold us back from doing things we want to do. Although I admit, sometimes we hesitate, or delay, in order to build our confidence that we can do what we desire.
9. The official color of epilepsy awareness is purple.
10. Epilepsy is not a monster. I belong to some national parent forums about epilepsy. They are helpful. But one thing that constantly gets me is how parents refer to epilepsy or seizures as a monster. I can’t do that for Grace. Here’s the thing. We have tried mightily and multiple things to stop Grace’s seizures. She has tried and failed at least 12 medications. We went so far as to have part of her brain removed. The seizures still happen. I am not comfortable with thinking that try as we might there are still monsters in our little girl. In our girl there is stubbornness, charm, knowing, goo, fun, thinking, wisdom, and innocence. No monsters. Not here. I want to clarify that I’m not judging those other families – I’m just telling you that is not the picture we are going to use here.
11. Epilepsy is isolating. It’s hard for people to understand. Relate to.
12. Grace has intractable epilepsy. That means that she still has seizures even though we are treating her for them.
13. Epilepsy looks different in different people.
14. Epilepsy is not contagious.
15. Epilepsy can’t stop you from dancing. With the right support epilepsy doesn’t have to keep people from doing what they want to do and enjoying life. For us Grace’s participation in dance signifies that.
16. The bathroom is one of the most dangerous places in the home for someone with epilepsy. Think of all things that can break, you can hit your head on, drown in, and there’s a locked door so no one can get to you. Ugh. When Grace is taking a bath nothing can interrupt that. I won’t leave her for anything.
17. Epilepsy is. I can be mad about it, sad about it, nervous about it, but it’s still going to be there. I’d like to help people understand it. Thank you for taking the time to read this.
18. There is no cure for epilepsy.
19. When we are asked to explain Grace’s epilepsy to her peers we explain it like this. We tell them that epilepsy means that Grace has seizures. We tell them a seizure is like a storm in Grace’s brain. Everything can be going along just fine…blue skies, beautiful day, and then all of sudden out of nowhere a storm pops up to disrupt things. (A seizure happens just like that.) The storm can be short or long but then everything’s ok again, the beautiful day returns. (The disruption in her brain is done and her brain goes back to doing its thing.) They seem to relate to that explanation.
20. I love someone with epilepsy. There’s a saying about how having a child is like having your heart walk around in the world outside of your body. I can totally relate with the thought. Grace having epilepsy adds more vulnerability and risk to that. It scares me at times. Her being out in the world has also brought some wonderful people into our lives.

Thank you again for listening.
Joy

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