Lava Lamps and Disco Balls; Epilepsy and Sadness

I don’t want to write this post. I’ve spend all weekend and most of today trying to avoid it actually, but I don’t have a choice. They sent me a free lava lamp.

Last week I never would have dreamed that I would be actively trying to forget one of my favorite days of the year, which is why I asked for the lava lamp to begin with. I thought it would be perfect for our now-annual Halloween dance party, and I pitched those lava lamp people this idea for a blog post centered around a party, with their product front and center and featured in all the pictures and paragraphs. I would associate their device with fun and happiness, and everyone would rush out to buy one. After all, they have new Halloween colors for their 50th anniversary! A spooky black and white model, or the one I chose in purple and orange. This was going to be a slam dunk post, and I was going to get a free lava lamp. How could I have known how the day was going to turn out?

The lamp arrived just in time, Friday afternoon. I pulled it out of its tall box and quickly assembled the pieces. My children were very impressed. My wife said “Why do you have a lava lamp?” Um, because it is awesome, obviously. The instructions said it would take 1-2 hours to really get going, so I plugged it in and put on a movie for the kids. Soon we would have a mood-setting new decoration for the party the following evening. Edward was so excited to go out for Halloween as Batman, and he grinned his five-year-old grin as we watched “Hocus Pocus.”

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And then, over the course of the evening and the next morning, Edward had 4 seizures. We had made it a whole week since being out of the hospital, and we thought we were going to be out of the woods. The several medicines that he was on were messing him up to the point of no longer being able to function as a human being, but we had cut back slightly on one of them and he had even made it to school on Thursday and Friday. His behavior and balance were getting better. Our hope was restored, only to be dashed once again. We got him to bed, praying he would be okay for the festivities he was so looking forward to, and I spent a long time staring at the lava lamp. It was finally up and running, and watching the globular plasma rise and fall and combine and separate, it brought me a bit of temporary peace. It was relaxing and mesmerizing, though nothing could take away my worry and fear.

The next morning, after another seizure, we gave him extra medication, despite doubling it up the night before. We were panicked, and it was the weekend so we were left with paging on-call doctors who didn’t have much help to give. Pumped too full of drugs, he spent the day barely able to walk in a straight line, eyes glazed over, angry and confused. Normally the further away we get from medicine time, the more he becomes himself, but not that day. For whatever reason, he got worse and worse as the day progressed. The on-call doctor said there was nothing we could do but try to get him to sleep, and if he continued to deteriorate, we’d be back in the hospital for observation. Happy Halloween.

Hope was slim and fleeting, but we grasped onto it as best we could and began to decorate for the party. I had a new disco ball that I hung from the ceiling, and of course I needed to give the lava lamp plenty of time to heat up and get going, so we hung spiderwebs, strung lights, and arranged our decorations all over the community room. Everything was ready except for our costumes. Since Edward was being Batman, he wanted my wife to be Robin. Ruby wanted to be a tree, and decided that I too should be Robin. Well, a robin anyway.

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We got our costumes on and tried to get ready for fun, making sure to point out our cool new lava lamp to everyone in attendance. In fact it was the brightest thing in the room, and if you look closely at the picture below you can see it in the center of the photo, shining brightly across the whole courtyard through the window.

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When it was time for trick-or-treating the boy could hardly stand. We borrowed a stroller from our neighbors and put him into it, pushing him around the neighborhood in a vain attempt to provide the kind of fun that he would remember. He cried out that he wanted to go trick-or-treating, never realizing that this is what he was actually doing. After a few houses my wife took him home; Ruby and I finished another few blocks, but she said her feet hurt and she wanted to go home too.

I went to the party for a few short minutes until my wife texted that he was screaming for me, so I left the lava lamp, the disco ball, the playlist, the snacks, the dancing, and I went up to his room where he was desperately wailing the kind of plaintive cry that you would only hear from a child who has had Halloween taken away. He begged us to let him go trick-or-treating, not remembering that he had already been out. He sobbed for the party. He broke down and asked us if Halloween was tomorrow. He didn’t really know where he was or what was going on, and as I sat by his bedside, holding his hands and weeping, my heart broke harder than it has ever broken before. I did not go back to the party. I sat in my house and I mourned bitterly for my son, and the simple things that he wanted but could not have.

My wife stayed with me for some time, and then returned to the party, where Ruby was dancing the night away. It was daylight savings night of course, so she got an extra hour to get down. They both walked in the door a little after ten, informing me that the party was a success and that all of the decorations, lava lamp included, were a bit hit. I was happy to hear this, but mostly I was sad. Facebook brought me even further down, as I scrolled through all of the pictures of my friends’ kids all dressed up for the night. I hated all of them. Eventually I helped my wife bring everything Halloweeny back into the house and I went to bed, miserable and depressed.

So now I have the unenviable task of making one of the worst nights of my life sound fun and exciting, and the thing is, the lava lamp is awesome! The kids beg us to plug it in every day, and it is soothing to look at. I can’t think of a recent purchase that is a bigger hit. But I can’t write about that party like I promised. I didn’t go to it. Sorry. Instead, I am telling the true story.

I have pledged not to write about my son’s health anymore, but what else is there for me now? Is there anything more important? Is there anything I am doing right now that supersedes this one issue? It is all consuming. If I didn’t mention it, I would have nothing to write about. It honestly feels like there is nothing else right now. This is my life. This is also Epilepsy Awareness Month, so instead of selling you something that is fun at parties, let me sell you on something else. Let me sell you on the notion that you need to be aware of epilepsy. Let me sell you on the idea of helping get rid of this terrible affliction. And let me tell you, if all of this is stressing you out like it is stressing me out, there’s nothing more relaxing that staring for hours at a lava lamp, which can be yours for as little as $21.99.

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Posted in Costumes, Edward, Epilepsy, Halloween, Health, Lava Lamp, Parenting, Party, Ruby.

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