If Evan Could Change One Thing...

Tonight at dinner the kids were talking about their lives and Aria said, "I'm pretty happy with my life and there is very little I could change to make it better, very little!"

Then Evan said, "Me too. If I could change one thing to make my life better..." I'm thinking he'll say Pokemon cards, DS games, iPod, etc. and then he looks at me and says, "and maybe you can help with this mom. The one thing that would make my life better is no more seizures."

That one little sentence shows the irony of the lives we are living. Evan trusts us and believes in us and our ability to fix the problems in his life and yet if this is his one wish, we let him down every time.

When he was little I used to think it would be easier when he'd be able to talk about his seizures and what it's like to live with epilepsy but I was wrong. Being more informed is better in many ways, but never easier.

Christmas begins with a Seizure

It's almost predictable in the epilepsy world to begin Christmas with a seizure. I don't know if it's the excitement leading up to Christmas morning or simply Murphy' Law rearing its ugly head.

It's not the first year things have gone this way for us and I know of a lot of families dealing with seizures on Christmas. The lucky ones don't call 911 or visit an ER. It puts a unique twist on how the morning and the rest if the day goes.

For our family there were no 911 calls and for this we are thankful. Evan was groggy and seemed to be going through the motions as he opened his gifts until he opened Pokemon cards and Beyblades of course. By the afternoon he was back to being his normal cheerful self and loved going to the Chinese restaurant for Dim Sum.

We have so much to be thankful for and we say this everyday. Maybe Santa will do better with my single wish next year.

Seizures are Serious

Last night we were talking with Evan and out of the blue he brought up one of the more serious impacts of epilepsy. He said, "I know seizures are pretty serious and sometimes people die from a seizure...but it's very unlikely that would happen to a child, right?"

Rob and I exchanged glances not knowing exactly what to say. Do we tell him that children do die from seizures? Do we say that we just heard of a 6-year-old child who was taken from this world too soon? Do we confess that this is our biggest fear? No, that reality is too cruel and too hard to comprehend at his age. Instead we nodded reassuringly.

That conversation hung with me all night. I'm not ready to have a conversation with Evan about his mortality and I don't think he is either. I know our choice to avoid this conversation is right for the moment but I also know we need to figure out how to tackle this tough topic.

Then at a little after 11:00 we heard Evan kick the wall and make a strange noise. We rushed onto his room to find him having a seizure. We gave him the medication to stop the seizure and waited...6 minutes. Too long but not as long as the last one. I couldn't help thinking about his comment earlier in the evening and that we were once again spared from my biggest fear.

New Member of the Family Coming Soon!

Now that I have your attention, I am NOT pregnant! Evan has been approved to receive a service dog that will be trained as a Seizure Assistance Dog. It will probably be roughly a year before this all happens but we are very excited about it.

The first thing we have to do is fulfill a fundraising commitment to 4 Paws for Ability who will train a dog specifically for Evan. We will be raising $13,000 and have just begun this endeavor.

If you want to keep us with our progress, we have a blog set up and you can sign up to get email updates as well:

www.dog4evan.com

I know that this marks the beginning of a new chapter and we are all very excited about it!

Who is Evan?

If I had to use one word to describe Evan, I’d choose comedian. He loves to tell jokes and make people laugh and his comedic timing is beyond his age. He is also charming, sensitive, thoughtful, active, smart and extremely social. He loves Pokémon, riding his bicycle, playing video games and reading. He adores his older sister and the two have a very close relationship.

Evan’s doctors, therapists and teachers use different words to describe him: Tuberous Sclerosis, Epilepsy, Retractable Seizures, Cortical Tubers, Angiomyolipmoma, hypomelanotic macules, Processing Disorder, Hemiperesis, Increased Tone, Pronation...

Both descriptions are correct but we strive to provide an upbringing for Evan that will not define him by his disorders. We are well aware of how they impact him on a daily basis, but he is so much more than the sum of his challenges.

"Only" 5 Minutes

This morning Evan had a seizure and I was on my own because Rob is at the American Academy of Neurology conference. It was not really that big of a deal that I was alone because we've done this so many times, but I know Rob felt guilty for being away. He shouldn't because there is nothing that he could have done to change the events if he were here, but I guess that's just part of being a parent -- a really good parent.

I talked to Rob after the seizure had stopped and Evan was sleeping peacefully. Later I thought about how odd our conversation had been. The seizure "only" lasted about 5 min and I gave "just" one dose of rescue meds to stop the seizure. It has been 17 days since his last seizure and we commented on how great that was too. None of this is good, in fact, it's pretty bad. Yes, it's an improvement and we're happy to see that but this is not a good situation.

I hate the feeling of chasing after the illusive ideal of seizure freedom. I hate epilepsy and all the challenges and restrictions it brings to my family. I am fearful of what it will do to Evan if we can't get in front of the seizures and the effects it will have on Aria as she watches from the sidelines.

I got Aria off to school and then waited quietly for Evan to wake up. When he did he was feeling great. He was in a cheerful, talkative mood and went to school at 10:00. When I dropped him off he was chatting dramatically with the school secretary as she escorted him to class. He told me when he shows up late to school after having a seizure everyone is happy to see him and shouts, "Evan's Here!"

The Toughest Question

When I thought about the hard questions my kids would ask growing up, I figured the tough ones would be about where babies come from, if Santa is real, relationships and questions of my own experiences as I entered adulthood. I've already dabbled with answering the first two. I know there will be more questions that will test me, but I kindof know they are coming and in some small way I'm expecting them, ready or not. My approach has always been to be honest and give them small pieces of information until they are satisfied with the response.

Tonight as I was helping Evan get ready for bed, he caught me off guard. He looked up at me and asked in his sweet 7-year-old voice, "Mommy, do you think I'll have another seizure?" It felt like a kick in the stomach. I'm glad he's old enough to talk about his epilepsy and how it impacts him but it also means he's aware enough of the seizures to initiate a conversation. I smiled weakly and said, "I hope not" to which he responded, "I hope not too." He said he hoped he didn't have one on Christmas or Christmas Eve. I told him about the seizure he had last year on Christmas Eve and how he woke up in the morning, opened presents and had a great day, just as if it had never happened. I assured him that if he had a seizure we'd take care of him and he'd probably feel fine my morning and he seemed to agree with that.

This conversation was spurred by a seizure Evan had early this morning. It was only 3:30 am and it lasted 15-16 minutes. We gave him the rescue medication we keep by our bedside and after 5 minutes when the seizure wasn't stopping we gave him another dose and called 911. By the time the EMTs walked into the house Evan's seizure was ending. We didn't go to the hospital, but this is the longest one he's ever had. Evan always goes back to sleep and wakes up at the normal time for school, often not remembering having had a seizure. But he remembered this one -- I guess it makes more of an impression when a bunch of paramedics arrive at the house.

As the sedative effect of the medication took hold, Evan told them with his eyes closed that if he was going to ride in the ambulance, he wanted to go to the hospital in New York. We all chuckled and I thought, yep, that's Evan, even as he drifts off to sleep he's cracking jokes.

I'm sure there are more tough questions to come on this topic, but in some small way I'm expecting them, ready or not.