Back to the Fields Part 2

We spent the entire day in the hospital on Tuesday. I know it is hard to believe you could be in an emergency room one moment and go get ice cream the next, but that is truly what living with epilepsy is like.

You can have a serious, status seizure that can be life threatening but once the seizure is over and the after effects or post ictal state is gone, you go on with life as usual. It’s kind of weird.

The neurologist has always told us to let Spencer do whatever he felt like he could do as soon as possible after a seizure. We don’t want him to live his life with the attitude of a victim. Having epilepsy or a seizure shouldn’t keep him from doing anything that anyone else does (for the most part). It shouldn’t keep him from doing what he wants to do.

That is one of the reasons I allowed him to travel to Tennessee after his last status seizure. After we left the emergency room on Tuesday, he wanted ice cream. So we went to Scoops, a new ice cream place that recently opened near our home. It is truly what Heaven must be like, but that is a post for another day.

I have to side track for a moment and tell you some information we received from the neurologist on Monday at our appointment. We were told that statistically if you failed to gain seizure control on more than three medications, it usually means you need to begin to explore other options to try to control your epilepsy… i.e. brain surgery.

There is a good chance if the part of Spencer’s brain that was damaged at birth from his stroke (which is where they are pretty sure his seizures originate from) could be removed, he could possibly achieve seizure freedom, a big “if” with a lot of possible side effects from the surgery.

We have never considered brain surgery because we didn’t feel Spencer’s seizures were out of control or disruptive to our lives. However, if the current seizures he is having could possibly cause further brain damage, then perhaps we need to consider surgery as an option, a lot of information to digest.

So back to our trip to the ice cream store. We were in the car discussing the seizure. This is when he confirmed he had been looking for me and couldn’t call out to me. He didn’t realize I was at the computer and went upstairs looking for me.

He is pretty passionate and emotional anyway, but even more so after a seizure. He said he wished he could just remove the seizure part of his brain and stomp on it. I ached with him and felt his frustration.

Seeing an opportunity to explore how he might feel about surgery I threw out the information we had received on Monday. I’d like to share our conversation with you.

“Spencer, did you know there is a surgery available that could remove the seizure part of your brain. You could actually have that part taken out.”

“Really?”

“Yes. They would take the part of your brain that was injured when you had your stroke at birth out and it might possibly stop you from having seizures.”

“Would it hurt?”

“No, the actual surgery wouldn’t hurt because you would be put to sleep, but it would probably be a long recovery and you would be in the hospital for some time. You know two of our friends (not named here) who are Epilepsy Advocates had brain surgery and they don’t have seizures anymore.”

He sat in thought staring out the window for quite some time. I knew the wheels were turning in that complicated little brain of his. Then he said this:

“Mom, if I had surgery and didn’t have seizures anymore, could I still talk to people who had epilepsy to help them, so they wouldn’t feel so alone?”

Words cannot express to you how this mama’s heart could be so proud and hurt so much at the same time. The realization that my child would even consider continuing to have seizures rather than be prevented from helping someone else going through the same thing was almost too much for me. Especially after the confirmation I felt I received this past weekend at She Speaks. I really feel called to a ministry that involves my entire family helping others learn how to “seize every opportunity.” To learn how they can take the obstacles and bad things that happen in their lives and use them for good.

God truly has something special planned for this young man and I don’t just say that because he is my child. I just hope I am a good enough mama to prepare him for what is in store.