Zoo We Mama! I know most people think going to the movies is just a regular thing, but for my brother and I it was a real milestone. My brother and I read the series Diary Of A Wimpy Kid together, and I mean full out voices. When the movie finally came out in theaters, I was sooo happy. I’m 17 now and have had my license for a year and have been waiting to take my brother to a movie. A lot of things changed when Ethan was diagnosed with Epilepsy. I would always ask if he wanted to do anything with just me, but I always got the same response, “I only want to go if mom goes too.” Obviously not the response I wanted to hear. He just gets nervous about being in a crowd.

It has now been 35 days and no seizures, so finally tonight we made a date and went to see the movie. I finally know Ethan is comfortable and we can do all the things I have been thinking about together! I will graduate next year and head to college and I need to show my little bro a good time before I leave him alone with our boring parents.

I have to admit, sometimes people forget that it isn’t only Ethan who has to deal with Epilepsy. When Ethan has a seizure, I feel completely helpless just like he does. My mom and dad rely on me a lot when they can’t be home and it took time, a little crying and a little yelling for them to remember that I need them too! But in the end, I am so happy to be there for my “Little E”  whenever he needs me.

All I have left to say is this was the BEST first date I have ever been on!!!

Purple Day is March 26th – Wear your purple to support epilepsy awareness globally. Visit www.purpleday.org.

Three years ago I received a phone call to my dorm room saying that my younger brother had suffered a seizure. I was shocked to say the least and ever since that night a lot of things have changed in my family. The best way to describe how my family works now is to think of us as a bowl of epilepsy soup.

There is no question in my mind that my mom would be the broth keeping us all together. She is always trying to think of the positive and our ‘soup’ just wouldn’t be the same without her. My dad would definitely be the noodles.  You can have the broth but it just doesn’t work without the noodles.  My dad keeps us all on track whether it is my brother’s medication or just life in general. There is no question that my younger sister would be the spices, aka flavor. She has been the person to bring laughter to a lot of difficult times. As for my brother, he would be the spoon. I know you are thinking that the spoon has nothing to do with the soup but it plays one of the most important parts. You can’t enjoy the different components of soup without a device such as a spoon. My brother “spoon” has brought us all together, not only when he was diagnosed with Epilepsy but more recently through all of the different things he has been involved in, such as Purple Day.

Now I know you are thinking that I forgot about myself, but you’re wrong because I didn’t.  If our family was soup, I would be the grilled cheese. Whenever you have soup you probably always want to have some grilled cheese too, but that doesn’t always happen.  I am currently in college so I don’t get to be home often with my family. But just like grilled cheese I would always prefer to be there with the ‘soup’.

Purple Day is March 26th – Wear your purple to support epilepsy awareness globally. Visit www.purpleday.org.

When my wife told me we were asked to be guest bloggers on Dr. Greene’s site I was very excited. Any time my family has a chance to talk about epilepsy we are more than willing.

My 11-year-old son Ethan was diagnosed with Epilepsy in March of 2007. At the time of his diagnosis it was a very frightening time due to the fact we really knew nothing about this disorder. I felt like it was a death sentence for him, not knowing what his future would hold. The only exposure to epilepsy I’d had was with two classmates who both had the disorder. The only thing I knew was that sometimes they would have an episode called a seizure.

I witnessed one of my friends having a seizure and I can tell you now that the wrong things were done for him. That is the biggest reason I like to talk to people about epilepsy. Knowledge is the key thing people need to have when dealing with people with seizures. The more we read and researched about the type of Ethan’s epilepsy, the more we realized that things were not that bad. The doctors can tell you it will be ok, but until you read and see it for yourself there is always that doubt.

I know for me personally, I have learned so much by reading many blogs and joining lots of forums. Parents and patients alike can learn so much from each other.

Keeping a diary that lists every seizure is also very important. With Ethan’s seizures, we noticed his seem to be cyclical. All of his, but one, happened in the months of August-September and December-January. Ironically, Ethan’s very first seizure was on March 26th, the same date as Purple Day all across the world.

Every person is different, so there is no clear cut case when it comes to epilepsy. We have tried vitamins and altering his diet. We had Ethan tested for possible allergies as well.

Currently he takes an all natural vitamin B, all natural omega fish oil and aloe vera juice. He does not consume anything with aspartame or other artificial sweeteners. We try to limit his intake of artificial colors and flavorings as well. To this point it seems to be working.

Ethan has been seizure free since January 17th, 2009 and he was recently taken off his medication. We are keeping our fingers crossed that he will be seizure free for life.  I hate that there is still so much misinformation about Epilepsy. It is great that there are things out there like Purple Day to get people talking.

As for right now, it was so exciting to watch Ethan play his first season of basketball and I know he can’t wait for baseball season. I volunteer to coach the team every year and it brings us all together even more. Ethan loves to catch and plays first base too!  Ella is the dug-out mom—all of Ethan’s friends have crushes on her and listen to everything she says (not!), and Gracie keeps book for the team (she gets her organizational skills from me, not her mom!). As for my wife, she is definitely a bleacher coach—so annoying—but I couldn’t do it without her. Another trying summer at our house for sure!

Purple Day is March 26th – Wear your purple to support epilepsy awareness globally. Visit www.purpleday.org.

Do you ever have those moments where you suddenly stop,look around and say, “How did I get here?” That was me last week folding laundry.  It’s like you live your life and then it hits you–what your life really is! It’s so surreal that Gracie is graduating from NIU in May. Ella is picking out a hairstyle to match her dress for her junior prom and Ethan is SO pumped up for baseball to start. What is even more amazing is that for the first time in a long time that is really what our life is about.

When Ethan was diagnosed with Epilepsy it swallowed our WHOLE family and it took a long time to feel like we could take a deep breath again. Well, we made it! Purple Day for us last year was so exciting. It was such a great way to feel connected as a family to something so important to us.

Volunteering has been a part of our house since the kids were small. There is no lesson more valuable than to give and not receive. To spread the word about Purple Day, we decided to make it part of our Christmas card last year. Turns out our family and friends weren’t the only ones who loved the picture of the kids in their Purple Day shirts, because that very photo was selected for the Purple Day 2010 poster! To say a picture is worth a thousand words is an understatement. With that quick photo, taken by our neighbor, we have been able to speak hundreds of thousands of words about Epilepsy. It has given our family, and especially Ethan, the opportunity to be heard in ways we never thought possible…uh..like this blog for example!

Ethan has been off medication for 35 days now.

“So how are things at your house?” It’s a simple question, right? Well, our family has taken a complicated road but we now have a really simple answer……Things are great!

Purple Day is March 26th – Wear your purple to support epilepsy awareness globally. Visit www.purpleday.org.

I have so much to do the week of PURPLE DAY. Today I’m going to the local library, which I am totally stoked about, to read a book about Epilepsy to the kids. Then I’m going to my friend Tyler’s house to hang out. I still get nervous about spending the night places so I don’t do that.

 

My family is really awesome though. They all have roles when I have a seizure. They all talk to me because I can hear really clearly. My mom is in the front and my dad is in the back (because it is really hard for him to look at my face when I have a seizure – it really makes him sad, he says). My sister Ella runs around everywhere like a gopher. She gets towels because I get sick and then gets water. She is cool! I always talk to my sister Gracie later on the phone because she is at college.

My friends are the best. When I had to wear a helmet to protect my head, no one made fun of me. They actually thought it was cool. They always threw me the pass at recess because who wanted to hit the only kid wearing a helmet? Score for me! Everybody took turns being my buddy because the school had someone go to the bathroom with me (kinda freaky) but my friends have been there the whole time.

My class got to hear me on the radio the other day when I was interviewed by a local station about Purple Day. I am hoping all this attention will get me plenty of dates later! My school is so pumped for Purple Day and I designed a shirt with my sister Gracie for all of us. It has the picture from the Purple Day Poster on it. I also went to my first movie with Ella. It was fun! I think she will tell you all about it in her blog. If there is anything I want kids like me to know, it’s that you can do anything you want. I still play baseball, basketball, swim, and play guitar.

Well, I need to get to the library, so gotta go ! Wish me luck!

Purple Day is March 26th – Wear your purple to support epilepsy awareness globally. Visit www.purpleday.org.