Graduate

On Friday, we saw Tommy's neurologist for what is hopefully the last time. The. Last. Time. When you've been seeing a specialist regularly for 2.5 years, it feels a little strange to break that relationship, but good. Very good. When we began weaning him off seizure meds in January, we hoped so big that this would be it. The end of our journey with epilepsy, but we were afraid to hope too big because epilepsy has a way of squashing your hope.

It's been a long journey, yet I recognize that our journey has been much shorter than that of so many others. Still, you guys. My baby looked like this when our journey began. That shaggy hair and those tired eyes from keeping him up for a sleep dep EEG and the always present pacifier. He was SO LITTLE. Remember how I rode in the MRI with him?

I get a choke-y tight feeling in my throat when I remember how terrifying those days were. We have come so far.


When we hit the two year mark (October!), his chance of remaining seizure-free forever hits 80%. It's amazing how this disease works, because one day I had a healthy 15-month-old who didn't like to sleep. And then, out of nowhere, he had three seizures in one week. Just like that. There are no signs with the type of epilepsy Tommy had. No fever. No illness. Nothing. Just one day, he fell down and had a seizure.

And just as suddenly, almost two years later, his neurologist tells us that we don't have to consider him actively epileptic anymore. I don't have a child with epilepsy. I don't. It is really hard to process that, because I did and now I don't, but I fully recognize that I could again and my God, that's a lot for your brain to handle. I asked her what we should do on his forms for pre-school. Do we write that he has epilepsy? She said no, that we don't want them to hover, that we want them to let him to climb to the top of the jungle gym and yes, yes, we do. But we also want them to know that he has a history of seizures, so we put that under past medical history, just like we would a broken leg. She said that often times, she still has people come in, but because Tommy shows no developmental delays and because he's never shown seizure activity on an EEG, there's no need for us to come back, unless he has another seizure, of course. No more yearly EEGs or blood tests.

I thanked his neurologist profusely for all she's done for us, for listening to us when the neurologist at our local hospital wouldn't. For being caring and loving Tommy. She told us that she loved these graduation ceremonies, even though she would miss seeing us. I know that we were probably one of her very minor cases, but she always treated us like his epilepsy was a big deal--she always understood that every seizure was so very scary.

This is the end of our journey, I hope, but I know that so many are still in their journeys. Epilepsy is and will always be a cause near to my heart. As we left her office, I found it hard to not cry, because it was big and overwhelming. We let Tommy choose a restaurant that night to eat dinner and celebrate, though I wasn't sure if he understood what we were celebrating. Someday he will. Someday he will understand this part of his life that was so big, during which he was so brave.

Tommy's Team 2013

Last week was an exhausting whirlwind of a week. This week proves to be even more of a whirlwind. I'm steeling myself for it with the promise of June and SUMMER. I can do this. You will not beat me, May.

Saturday was the Epilepsy 5k, which we did last year. I feel guilty because I didn't throw myself into fundraising like I did last year. My attention was on campaigning for the referendum that our school was trying to pass (which we lost. by 4 votes. DO NOT GET ME STARTED) and I will admit that fundraising fell by the wayside. Life is just so busy now. Luke is playing t-ball. His science fair was Friday night and that was honestly our focus all week. Although we did the research well in advance, we left the poster board until this week (rookie mistake). Since it was his science fair project, I let him do most of the poster board, except that he obviously couldn't type. Friday was hectic. I left work, ran to the grocery store to get stuff for his science fair and sides for the picnic to have after the walk, then straight to Luke's school to set up for the science fair. We didn't get home until 7, then I had to get things together for the walk.

I didn't find us a sponsor for shirts this year, so I bought shirts out of my pocket for the newcomers to the team. In hindsight, I probably could've found us a sponsor. I just didn't try and that's my fault, but buying shirts is the least I can do for those who do so much for us. Who give to a cause where their only connection to it is my son.
Like I said, I was so focused on campaigning for the referendum that the walk became secondary. Still, we managed to raise $1305. This is a lot less than we raised last year, but last year, I was very much actively fundraising and Tommy's epilepsy was not as managed as it is now. We also had more team members, many of whom raised a couple hundred dollars each. I'm proud to have raised over $5000 for the epilepsy foundation in the course of these two years.
I am beyond proud that despite how busy our lives are these days, despite two members of our family being at a t-ball game, we still made time to walk.

Maybe next year the weather will be nice?

When I started training for this 5k, I really wanted to race it. Even though it's untimed, I wanted this to be my comeback with regard to my injury. However, my feet have flared up for the eleventy-billionth time and have been an absolute wreck for the last week and a half. It hurts to walk, let alone run, so I haven't been running at all. I wasn't even sure if I was going to run, but I decided to give it a try and walk if I needed. The course was at beautiful Cantigny Park and wound past trees and flowers. Once I settled into an easy pace, I was so happy. There weren't many runners, just hundreds and hundreds of walkers, so it was peaceful. My feet were sore, but seeing kids in wheelchairs who are unable to walk at all because their epilepsy is so bad puts it in to perspective. So what if my feet hurt? I can RUN. The course was hilly, with a really steep hill just after the halfway point. A few people dropped to the side to walk, but I pushed myself up it and kept going, only to find out that the course looped around and made you go back up the hill. The second time I was mixed into walkers and a woman hit me in the face while she was taking off her sweatshirts. This made the hill even more fun! Soon, I was out of walkers and rounding the corner toward the finish line. Since I was going at such an easy comfortable pace, I wondered if I even wanted to push it, but I did and gave a double fist pump at the end. It was, by far, my most enjoyable 5k. I didn't race it. I didn't push myself. I didn't care at all about the numbers on my watch. I just enjoyed it. I watched the scenery go by. I read the facts about epilepsy on the signs throughout the course. I learned what the money raised for the 5ks does. I thanked all of the volunteers, which I don't usually have the breath to do during a 5k. Maybe I need to do more 5ks like this.

Afterward, I walked back to the last turn in the course and waited for the rest of our team, where I was stalked by wild turkeys (did you know that I'm afraid of turkeys? Cuz I totally am). Shelli, Martina, Lily and Tommy were the first to arrive, so I finished the course (again) with them and we waited for everyone else with cheers, then had a very cold picnic, followed by the kids playing on playground for, oh, four hours due to my sister falling and requiring an ER trip and stitches (she's fine!).


With the walk yesterday and for awhile now, I kind of felt like, should we be there? Because we've been over a year seizure free and he's no longer on seizure medicine, but then I saw a team with a sign that said seizure free since 2010 and I smiled. Of course we should be there because even though we it may not be a part of our daily lives NOW, we will always be touched by epilepsy. Always. We will always be a part of this community, a part of the community of parents who know what it's like to be so powerless against a disease you cannot predict. I will always remember the moment that I first held my seizing child in my arms and my heart stopped and stopped and stopped, and even though you never know what each day will bring, I realize that my God, we are the lucky ones.

Tommy's Team

Last year, forming Tommy's Team was a no brainer for me. Although the weather failed on us, with grey rainy skies, it was a beautiful day. One of the best I've had. To see all those people out there supporting us, supporting our cause--making it their own--was a feeling I can't quite describe.

This year has been a little different. So far, Tommy is still successfully off his medicine and although we hold our breath, breathing becomes a little easier each day.
Yet, epilepsy is still so prevalent, even if we no longer fill a medicine dropper two times a day for Tommy, even if he hasn't had a seizure in over a year. My best friend Keli's daughter was just recently diagnosed with epilepsy. As I texted with her and felt her pain from seeing an otherwise normal, healthy child go through all that she did in a single day, I thought back to our day of tests when Tommy was first diagnosed... and how no parent should have to go through that. But they do. Daily. Like it was for us, it is for them--unfair.
Friday, Shane came home from a work after talking to a student whose sister is epileptic. Like Tommy, she seemed to outgrow it around the age of four. Then when she went through puberty, the seizures came back and she had to go back on medication. In this way, epilepsy is one of the worst monsters ever, because it can lie in wait for years. And in this way, I know we will always be looking over our shoulders waiting for it to strike again.

For these reasons and so many more, we will walk again. To raise money so that someday, no parent will have to go through those tests again. Or that maybe when they do, someone will say to them, "Here is what we can do. Your child will never have another seizure again."

If you live in the area, I would love to have you walk with us. If you walked with us last year and have your shirt, please wear it again. I don't have a sponsor for shirts this year, but I'm going to do my best to get shirts for anyone new who is walking with us. If you can't walk with us, but would like to support our team, there are many things you can do. Donations of even the smallest variety are appreciated.

This year, we have some wonderful people supporting our team, too. Shrinking Jeans is currently hosting a DietBet weight loss challenge. It just started four days ago and runs for twenty-four more days, so you have lots of time to join and attempt to win the cash prize at the end. This is a great chance to jump start your spring weight loss. When Christy and Lissa emailed me and said they'd like to donate a portion of the earnings to Tommy's Team, I was beyond touched.
Another amazing piece of support is this beautiful necklace, created by Cameron. When she emailed me to ask if I was interested in her designing a necklace where the proceeds would go to support Tommy's Team, I was so touched and excited and well, I couldn't wait to buy one myself. Cam and I actually "met" when I bought a necklace that said "hope" from her shop while pregnant (pictured here) with Tommy--very fitting.

I am beyond excited and touched at this generosity poured toward Tommy's Team and moreso, toward the epilepsy foundation and epilepsy research. This year, as with last, we walk with hope for a seizure free future. In some way, I hope you will join us.

Epilepsy Awareness Month

This post has been sitting in my drafts all month. Call it writer's block, call it heart block. I'm not sure why. I wanted to write this post, I really did. I wanted to write it in November because November is National Epilepsy Awareness Month. I've written about epilepsy before. Two years ago in November when Tommy was recently diagnosed. More recently in April when we were fundraising for Tommy's Team and so many of you graciously gave to us.

I wanted to write again, though, because this cause is important to us, because so many people do still reach out to me with questions about epilepsy and seizures and about area doctors. Instead I stared at this draft for a month and here it is, the last day of November and I don't know what to say.

I want to tell you that if you've come here because your child has seizures or because your child was just diagnosed with epilepsy, stay strong. There is hope. If you've had to see your child go through tests, it's painful. It's unfair. You wish you could take the tests for them, as you pray that the results are normal. Or that if they're abnormal, they at least give you answers. What a strange thing to pray for.

This may sometimes be the face of epilepsy, as the parents of epileptics see it.


Brave. Making a tough guy face at the camera, with a head full of electrodes and bandages. You feel like he is braver than you because you couldn't imagine being so brave at three, let alone now.

This is also the face of epilepsy. A healthy, sweet boy. Introspective. Not smiling for the camera because he was D-O-N-E with the photo session at that point, but still letting his mama hold him close.


He hasn't had a seizure for over a year now. I didn't think I'd ever be able to say that. I'm so happy, but I'm also so scared. I'm scared because he lived 15 months of his life without ever having a seizure and then one day, he just had one. Just like that. This is what epilepsy is. I know this. And so, I move forward with the realization that he could have one tomorrow. With each day that passes, I sometimes forget. I forget that he has epilepsy and then, I remember. When he's quiet in the next room a little too long. When he moves in a strange way. When he trips over nothing. Then my breath catches and I wonder if that's the moment that my heart is going to shatter.

Please don't get me wrong. I'm hopeful, I am. I am so hopeful. He's never had any abnormal test results. We have no indications that he won't outgrow this. I've just learned to be distrustful of this disease and it's hard to shake that, but I still carry this hope with me, in a tiny little corner of my heart.

I guess I didn't really teach you anything about epilepsy, except this: my little boy is so brave. Whether he has more seizures or never has another again, I will always treasure his bravery through this journey. I never imagined this as a parent. I never could've imagined this as a parent. It's not something that you sign up for or something that you ever worry about when you're pregnant or when you're holding your new baby in your arms, and trust me, I had plenty of worries, but here I am. Here we are. What I know is this... whatever happens, epilepsy hasn't beaten us yet--and it never will.

2nd photo credit goes to Donya

Is it okay to hope a little?

Friday we saw Tommy's neurologist, for the first time since February. It was our longest stretch seeing her, because it is his longest seizure-free stretch. As the months tick by, I'm afraid to breathe these words in more than a whisper. Afraid to talk about it, much less type it. Even now, I'm so afraid. I am so afraid I'm going to jinx it, that our carefully placed house of cards is going to crumble once I hit submit this post.

I know this is silly, but October scares me. October will be one year since his last seizure. October will mark the two year anniversary of when his seizures first began. I kind of hate October. All the what ifs and the fears and the whys swirl around in my head. What makes him seize in October. What happens? What can I do to make it stop? Is he going to have another seizure? Please, God. No. I can't do this anymore. Sometimes we forget that he has epilepsy. Sometimes we've allowed ourselves to hope that he will never, ever have another seizure again and I just don't know what I will do. I know it's a possibility, but I just don't even like to think about it.

Anyway, we had a good appointment. There's so much that I want to share with you, but I can't just yet because my mama heart can't handle it all at once. It was positive. Hopeful. And I just have to hold on and make it through October, then I can share more about Tommy and what his future holds.

For now, I want to tell you how proud I am of this boy. He doesn't really like doctors and he gets nervous, but he sat so still while they took all of his vitals.


Then we found out he needed a blood draw and he didn't even shed a tear. He whimpered a little when the needle went in, held my hand, then he just sat and watched. Better than most adults!


He earned himself a Spiderman sticker and a cookie from Au Bon Pain for that. I am so proud of him. Next month, he will have to have another EEG. I hope and pray the results will be normal as they have always been. Epilepsy is exhausting, though, because there's no test that can tell us if he'll have another seizure, really. We just wait each day as we have been and pray that this boy goes to bed healthy.

Our Broken Brains

Anyone who knows me, knows that I've dealt with migraines for a long time. For awhile, I just figured they were my lot in life. And really, they were okay. I got them once a month. I would take an Excedrin Migraine and pass out, then when I'd wake up, I'd feel better. It went on that way for awhile. I tried dietary and lifestyle changes Then Luke was born and they got worse, but not too much worse. Then Tommy was born and they got worse, way worse. I was missing work, left and right. Excedrin Migraine didn't even begin to touch them. Stupidly, I still figured it was my lot in life and soldiered through. I tried chiropractic care and that really did work for awhile, but then they came back, with a vengeance.

I'm stubborn to a fault, so it took awhile before I admitted that this shouldn't be my lot in life. It took a few bad incidents this fall, where I had migraines that lasted 48 hours before I admitted that something wasn't right. I was missing too much work. More importantly, I was missing too much of my childrens' lives.

So, I finally, FINALLY shut up with all of my "lot in life" crap and called a specialist. Only the specialist I called was so very special that I had to apply to be his patient. Luckily for me my head was busted enough that he totally wanted me for a patient, but unluckily for me, there are apparently a lot of busted heads out there because although I called in January, the earliest they could get me in was... June. I know. But hey, I've been having migraines since I was 15. The wait from January to June seemed like NOTHING.

The office called last week and said they had a cancellation and could get me in a week early, if I was interested. Unbroken head a week early? Sign me up! Anyone who follows me on twitter knows that I was 800 kinds of nervous for about 800 stupid reasons, first and foremost being that I was absolutely terrified that the doctor was going to make me have an MRI. Remember a year and a half ago when I had to go in the MRI with Tommy? And I kind of alluded to the fact that, oh hey, this was awful? Well, it was AWFUL. So awful that I hope to never, ever have an MRI. In fact, if something should happen that I need an MRI, maybe just take me out back and shoot me instead. And yes, I'm aware that having an MRI done by yourself is probably very different than going into an MRI on your stomach while trying to calm down your panicked 15 month old who you really, really hope doesn't have a brain tumor. Logically, I get this. Illogically, I want nothing to do with an MRI ever again.

Luckily, the doctor put me through a series of physical tests that determined that it's not a tumah, so I don't need an MRI. EXHALE. Anyway, long story short, this neurologist was awesome. We had a great discussion on the genetic connections between migraines and epilepsy and he explained that the brain at the start of a seizure is the same as the brain at the start of a migraine, which I find very interesting. He also brought to light some connections between distance running and migraines, which explains why I've had some nasty migraines after running longer (for me) distances. This doesn't mean that I have to stop running, he just wants me to ease off the distance for awhile. He put me on a daily preventative and gave me a prescription abortive for any breakthrough migraines. There is, of course, no guarantee that it will work or that I won't have a whole slew of side effects that make it not worthwhile, but I have hope and faith that if this doesn't work, we will find something that will. I can't tell you how amazing that makes me feel. For a long time now, I've woken up every morning, every SINGLE morning, and immediately ran through the way I felt to see if I had any signs of an impending migraine looming. Do you know how awful it is to have that on your mind first thing every morning? I look forward to a day when I can just wake up and greet the day.

Don't be stubborn like me. If you're dealing with some sort of chronic issue, don't suffer. It's not worth it. If you have migraines, you don't have to deal with them. You shouldn't have to deal with them. When the doctor asked me to rate the pain of a my migraines, I went the English teacher route and told him that I've had two kids without any pain meds and would much rather go through childbirth than have a migraine. That is absolutely true--that's how bad they are for me. How ridiculous to suffer through that on a sometimes weekly basis. Here's hoping for a less painful future!

For Hope

"Lord save us all from a hope tree that has lost the faculty of putting out blossoms." ~ Mark Twain

When the boys were babies, I used to watch the rise and fall of their chests sometimes. I'd stand nearby and place my hand on them to feel the steady rise and fall, the assurance that they were okay. The first time Luke slept through the night, my heart panicked when I opened my eyes to the sunlight. I rolled over, placed my hand in the bassinet and was reassured that yes, he was still breathing. The thought that a baby could just stop breathing while sleeping was so scary and when they passed that stage, I was so grateful. It was one less thing to worry me.

And then Tommy was diagnosed with epilepsy and I learned about sudden unexplained death in epilepsy... and you know what? That's just not fair. Suddenly I was back to tiptoeing into his room every night, multiple times, placing my hand on his chest and waiting for that reassuring rise and fall. Only this was different than when I had infants, because I wasn't able to hope so much, because it might be something that he'd never outgrow. I wrote about feeling like hope was dragging around behind me, like a lead balloon. It was so hard and heavy, for a long time. I kept it inside of me mostly, but it was such a crushing weight. Somehow, the loss of hope is heavier than anything in this world. For awhile, I thought hope might never return. It's so hard to hope when all you see when you close is your eyes is the image of your child with twisted blue lips and a pale face.

But it did... it always does, and I found the sweet hopeful, happiness that we had before his diagnosis.

Yesterday, we walked and ran for people who might not have that hope. We walked and ran because epilepsy is not stronger than us. It's not. It might be big and scary, but it won't beat us. We walked and ran because maybe someday, there will be a cure and maybe someday, parents won't have to go through what we did. As I ran yesterday, I studied the faces of the people I passed. Some wearing team tshirts, some not, and I wondered how they were connected. I wondered what they went through to lead them to this place.

On the way home, Shane asked me what connections the people on our team had to epilepsy, if their children were epileptic. I said, "No. Their connection is Tommy," and that's it. Some of the people on our team are friends of friends. Some of them, I didn't meet until yesterday. Some of them held my hand through his diagnosis and cried with us.

And those who couldn't walk with us because of time or distance or commitments or illnesses were there in spirit, through donations and support. As of today, Tommy's Team has raised $3345. This amount far surpasses my wildest thoughts on what we could do--and we did it all because we aren't going to let epilepsy win. Because, no matter what, this disease is not stronger than our hope.




Huge thanks go out to the sponsor of our tshirts, Caribbean Pools & Spas

Tommy's Team

With each day that ticks by, I can't believe it's been so long since Tommy has had a seizure. Since early October. That's so many months, so many days. I could count them all, but I try not to because I don't want to let epilepsy be that much in charge.

We just took Luke to Kindergarten round-up. We had to fill out medical forms. Or rather, they gave us medical forms to fill out, but we had nothing to write. It made me realize that even if Tommy has no more seizures between now and Kindergarten, we're still going to have to write down that he has epilepsy because it doesn't just go away. Even if he outgrows it (and 2/3 of children do), he's still going to have a low seizure threshold and the likelihood of him having another is higher than it would be in a non-epileptic person. It's like the monster in the closet that goes away when you turn on the light. You swear it's there and you know it is, but you can't see it. That doesn't make it any less there.

The monster can't take away hope, though. And what I hope for is a seizure-free future. Did you know that epilepsy is historically one of the most under-researched diseases, even though it affects more people than multiple sclerosis, cerebal palsy, muscular dystrophy, and Parkinson's disease combined. Not so many decades ago, people with epilepsy weren't given a normal life. They were institutionalized. They were thought to be possessed by the devil. In some countries and cultures, they still are. It makes me wonder where we'd be if epilepsy research received more funding. If instead of putting epileptics in institutions, we sought to find a way to stop their seizures.

We live in a different world now, and I am so grateful. Still. STILL, there are so many misconceptions about epilepsy. When Tommy was diagnosed, we had family members question it. We had family members act embarrassed and appalled and some of these family members still don't believe or admit that he has epilepsy, they still insist that he must not be having seizures and it breaks my heart and makes me so angry. It makes me wish they could be by our side when he's had a seizure and see what it's like and see that it's not embarrassing or appalling but scary and that when they question us, they belittle what this little boy has lived through in his small life. We once thought he was going to die, and we were so glad when the diagnosis was epilepsy and not something else. Why can't they feel this way, too?

So as I hope and pray for this seizure-free future that may never happen, I also hope and pray for education and understanding. For an end to the stigma surrounding this disease. As you know, we're working hard to raise every little bit we can for epilepsy research by walking in the Greater Chicago area epilepsy walk. Thanks to the absolute generosity of so many of you, we've already raised over $2000! It never ceases to amaze me what we're doing. As we're running down the month of April, I want to remind anyone who was thinking of joining the team to please do so soon. I'm going to be turning in final counts for t-shirts soon and don't want to miss anyone. I can't wait to reveal the t-shirt design, because I'm pretty excited! And as always, if you could offer any monetary support, we would love that, too.

Most of all, thank you for reading and following and supporting us in our journey.

Holding Our Breath

When Tommy first started having seizures a year and a half ago, we ended up meeting with the on-call pediatric neurologist at our local hospital. After breezing into the room and introducing herself, then talking briefly to Shane (I was with Tommy while he was having an EEG done), she announced that he wasn't having seizures. My heart soared and I hopefully said, "Oh?" thinking she was going to say he just had some sort of temporary sickness and we'd never have to go through that again. Instead, she said, "Yes! He's having temper tantrums and holding his breath." Just like that, my heart fell and the protective mother in me took over. I explained that while Luke did take away a toy from him shortly before one seizure, during the most recent one, he'd been walking toward me smiling and then he just fell and began seizing. I was angry. Hurt. Insulted. I couldn't believe that this complete stranger would think that I didn't KNOW what a temper tantrum looked like, that I'd somehow mistake that for a seizure.

Suffice to say, we made up our mind pretty quickly that Tommy would never be her patient. We left the hospital that night and the next morning, we took Tommy to University of Chicago. It was like night and day, comparing the two. Our appointment at University of Chicago lasted two hours. He'd already had all of the tests done at our local hospital, so none of this was testing. First we met with the resident, who went over a more comprehensive medial history than I've ever given. He examined Tommy. Then he took the test results from our hospital, his chartings, and conferenced with the pediatric neurologist. Then she came in and the first thing she said after introducing herself was, "Your son is definitely having seizures." I wanted to cry. Not because she said he was having seizures; I already knew this. Instead I wanted to cry because she LISTENED to us, because she took the time to care about my son and not just slap a blanket statement on him. I know that at a major hospital like U of C, she must see so many children who are far worse than Tommy, but she didn't blow us off and she understood that we are scared and looking for answers.

Sometimes with epilepsy, though, there are no answers. She couldn't tell us why he was having seizures or if and when he'd have another, but she gave us hope for a seizure-free future. These days, we're actually holding our breath (except for Tommy, who prefers to just yell at the top of his lungs), as he hasn't had a seizure since October. Since OCTOBER. We've never had such a long stretch. I don't know if this will be it. I'm afraid to even hope that this will be it, because epilepsy is such a tricky disease. There is still so much unknown about epilepsy.

This is why I'll be running for Tommy on May 12th. I'm choosing to run for the Greater Chicago Area Epilepsy Foundation for a few reasons. One, we don't have a very active local affiliate. Two, Tommy sees a doctor in Chicago, and I would like my money to go to research in that area. Three, I know a lot of awesome people in the greater Chicago area, some of whom are already signed up to walk or run for Team Tommy. How great is that?

Looking back on when Tommy first began having seizures, when I first opened up and blogged about it, I could not have gotten through that time without the support of this community. It was a scary, uncertain time for us, moreso than I could ever put into words. And so, as I was thinking about how I could bring more attention to epilepsy awareness, it hit me that I wanted to give back to the people who supported us, too.
With that said, I can't afford to give back to all of you; unfortunately, I did not have the winning PowerBall ticket, but I definitely want to give back to one of you.

With this post, I'm giving away a $30 gift card to one of these five awesome places: Starbucks, Sephora, iTunes, Amazon, or Dunkin' Donuts (winner's choice!). I thought to myself, Where would I like to spend someone else's $30 and these were the five that popped into my mind, so I hope you all think like I do.
What can you do to enter? Go to the epilepsy facts page and tell me something new you learned about epilepsy. That's it! Just learn something new and carry it with you.
For additional entries, you can do a few things. Join Team Tommy (Team Tommy will be walking on May 12th in Wheaton AND May 19th in Chicago and we will have t-shirts)! Don't live in the area? You can donate to support Team Tommy. Have you already joined or donated to Team Tommy? Awesome! You've already earned extra entries.
Finally, you can tweet or Facebook or blog about what we're doing. I would add up how many extra entries you can earn, but I don't teach Math.

Giveaway will close Monday, April 9th. Good luck--and THANK YOU from the bottom of our hearts.

I'm With Him

I had a really great day Friday. It started with dropping Luke off at preschool. I don't get to take him directly to his preschool class very often, so this is kind of a big deal. Before I took him to preschool, he wanted to go to his Extended Care room so he could introduce his teachers there to his brother. Isn't that sweet? Even though my boys get a little crazy with each other sometimes, the love they have for each other is pretty awesome.

After dropping him off, I took Tommy to get his haircut, where I had a very awkward encounter with a woman who thought I was named Serena and had just bought her house. By the time I realized what was going on, it was too late to correct her and I had to pretend to be Serena to be polite. I couldn't get out of there quickly enough! Following his haircut, Tommy and I went to Starbucks, where he asked for a donut. Of course I got him a donut--and one for me, too.

Then we went and visited Julie at work. In typical Tommy style, he refused to acknowledge anyone in Julie's office, but he made himself very comfortable.

Of course, when we left her office, he immediately began chattering away about Julie and her office and the pizza he ate for lunch.
We also rode some elevators and saw some fish.

And then we made our way to the fourth floor of the Comer Children's Hospital, where we saw Tommy's neurologist.

It's amazing how easily this comes to me these days. How when I told people that I was taking off work on Friday to take Tommy to University of Chicago, they were immediately troubled. "Oh no, we just have to see his neurologist. It's routine." And it is. Epilepsy is routine for us now. Tommy having a neurologist is also routine.

There was a time when it wasn't, though. Many of you followed me through that time and I can't thank you enough. There was a time when it was big and dark and scary. There are STILL times when it is big and dark and scary, but mostly it lives in the back of our mind. We know how long it's been since his last seizure (he's in his longest seizure-free stretch yet!), but we don't watch him every minute worrying that he'll have one. Mostly, we just let him be a kid. I know we're lucky. Some epileptic children have more severe cases than Tommy. It's strange to say that we're lucky, but we are. If sitting in a pediatric neurology waiting room has taught me anything, it's that it could be so much worse.

There's so much that is unknown about epilepsy. So much research that is yet to be done, and so, we've decided to participate in the 2012 Epilepsy 5k. Do you live in the area? We'd love to have you join Tommy's Team . It's a fun run/walk (we will be doing the one in Wheaton, on Saturday, May 12), so you don't even have to run. Thanks to a tremendously awesome sponsor, we will have matching shirts (now I have two months to figure out how to design a shirt), and I promise to bring donuts. And hugs. Lots and lots of hugs.
There's so much that I can't do. I can't see in the future. I can't determine if Tommy is going to outgrow his seizures. I can't make it so that another parent won't have to go through this, but I want to help. When Tommy was first diagnosed, the epilepsy foundation sent us a huge packet of materials to share with Luke. It might seem simple, but the ability to explain to Luke what was happening to Tommy--when we could hardly understand it ourselves--made such a difference. This is one of the many things the epilepsy foundation does and one of the many reasons that this is so important to us. I am running for education--and for hope, for the hope that someday, they'll understand this disease a little better and no other parent will have to helplessly hold their seizing child, praying as the seconds tick by that it will stop, that they'll be okay. I want someone out there to have this future.

half marathon training [week 5]

This week was not the best, through no fault of my own. Thursday's monthly migraine knocked me down. There was no way I could run on Thursday and while I wanted to try and get my miles in Friday, I was still dehydrated and pretty lousy from Thursday so I thought it best to rest.

Monday was an easy three miles. Every time I have an easy three miles, the wind decides to scream. It was ridiculously windy, which has to be the worst weather condition. Despite the wind, I still managed an average 9:48 pace. I'll take it!
Tuesday was four miles. I did the first two miles in under twenty minutes and felt good, then my hip freaked out and I had to do run/walk intervals to keep it from spasming. I still finished with a 10:09 pace, but I know I could've done better if my hip hadn't lost it. I am pretty sure I need to head to Fleet Feet soon and get some new shoes, as I've had these for over six months and put around four hundred miles on them. Thankfully I have two gift cards, so I can budget new shoes!
Wednesday was strength training. I made it through another week of the Tough Mudder workout without dying. I might see little baby muscles popping out on my arms, but I'm not sure they're doing anything as of yet.

Saturday was my last step back week before the long runs start increasing. I'm glad it was a shorter run, because I was still sore and achy from Thursday. I felt like my legs were filled with lead, but I just kept pushing forward and finished five miles with a 10:40 pace. Not the best, but I finished it despite feeling like I wanted to throw in the towel halfway through. I always try and do my Saturday runs early. Not because I like to pop right out of bed on Saturday, but because it's SO NICE to come back home, shower, put on comfy clothes and have a whole weekend of nothing stretching ahead of me. It's such a great feeling.

As I know a lot of people are scheduling spring races and other spring things, I wanted to throw out there that I'm definitely planning on doing one of the Chicago epilepsy 5ks (this is why I started running last April... I saw these advertised and knew I HAD to do it next year, for Tommy). I would LOVE for anyone in the area to join me and run or walk for Tommy. You don't have to run, but if you want to try and run it, you have time to train for a 5k between now and May. Maybe this could be the goal you're looking for to get started. Right now I'm leaning toward the one in Wheaton, because it's a) $10 cheaper and b) looks like it's in a really pretty place. If you think you'd like to do this, you don't have to commit to fundraising or anything. If you want to fundraise, that'd always be great, but I'd just really love to have a few faces out there for Tommy and other people/families living with epilepsy. If you think you're interested, let me know which event would work best for you and leave your email address so I can contact you later on. I hope some people can join me!

Clearing Cobwebs

As we tiptoe up on October, I'm trying to shake my brain free of all the cobwebs that built up over the last year. I still remember the weather early October of last year. It was bright sunshine, blue skies, and warm. It never seemed to make sense to me that the weather was so beautiful while a storm was raging inside my head.

I suppose that's a blog post for another day, though, because I can't quite think of that anniversary yet. Instead, all I can think about is how my mind is finally clearing. I never, ever gave less than 100% in the classroom last year, but it was hard. 8th graders aren't known for empathy, so when I came back from a week of hospital visits, tests, and no real answers, one said "We thought you got fired." Another said, "Finally, you're back. What'd you do, go on vacation?" And my personal favorite, "We thought you were gone because you killed yourself." I know that 8th graders are tactless and I'm pretty good at reminding myself that their cognitive reasoning skills haven't fully developed yet, but to my heart that was already broken in so many ways, each of these hurt and irritated an already so fresh wound. So I had a school year where I gave my all in the classroom but hardly had a relationship with my students. I hated it.

This year is already better. I'm redoing my short story unit plans in a way that is tedious for me but is very beneficial to my students, especially those who struggle with reading. It's been good to see the lower readers really grasp the concept of a story. And yes, it's been good to form relationships with the kids and know that they'll last.

I'm shaking off things in other ways, too. I've been struggling with running lately, but finally, this last week, I felt myself getting stronger. It's been so long since I've had that feeling that I embraced it cautiously. When I set out for a run yesterday, I told myself I had to go two miles without stopping. I made two miles and felt fine, even after conquering a big hill. I told myself I'd run until I reached the main road, then I could stop if I wanted. I reached the main road and didn't need to stop. I kept going until just after mile three when I had a nasty cramp in my leg. I stopped for less than a minute to stretch and shake it out and thought, "This is it. I'll end up mostly walking from here on out." Except that I didn't. I took a new route and enjoyed the sights. Before I knew it, I was at four miles and didn't need to stop. I felt strong and for the first time in a long time, I thought, "10k? I can totally do a 10k!" I pushed myself to a faster pace for the last half mile and ended at five miles out of breath but smiling. Running is so mental. I knew I could go five miles without doing intervals, I just needed to clear the cobwebs and forge the connection between my mind and my body.

This October is going to be good. I can feel it.

Two Months, Two Days

That's how long it's been since Tommy's last seizure (the last definite one, sometimes normal 18 month old behavior could be a seizure and it's hard, this is hard). I roll the days around in my brain constantly, like a job site posting telling how many days since the last accident. When we passed the two month mark, I breathed a little easier. Still, I'm waiting for the other shoe to drop, because I just don't trust this epilepsy monster.

Sometimes I gaze at him and wonder what's going on behind those eyes, like all parents do. Unlike all parents, I wonder how his brain is spinning, if it's going to misfire soon.


I still tiptoe in and place my hand on his chest every night. Sometimes I wake up in the middle of the night and worry. Sometimes I don't. It confuses my head lately that I got pregnant with Tommy when Luke was at the age Tommy is now. Epilepsy has made him my forever newborn, my afraid to let out of my sights and arms baby and will I ever have room for another?


Tommy fell down on the floor in the midst of an epic temper tantrum and Luke said, Mommy! I think he's having a seizure! I reassured and swallowed around the perpetual lump in my throat and wondered at the bigness of a three year old knowing the word seizure.


If you were sitting on the couch next to me right now and we were drinking champagne, I'd raise my glass and say, Here's to two months and three days.

Lead Balloon

I've been collecting Willow Tree angels since I was 15. Back before they were sold in Hallmark and every other store imaginable, this little florist by me sold them. It was one of the few places where you could find them, and I just fell in love. I haven't gotten any new ones in the last year or so, due to budget and Shane never remembering which ones I need, but this little boy with the Hope balloon is one of my favorites. I bought him for myself ages ago and I bought him for Sara Joy on sweet Joel's first birthday.

I love him and his hope balloon, but lately, my balloon has felt a little deflated. Like the helium has all gone out and instead of holding it aloft, I'm just dragging it after me.

I'm trying. I'm really, really trying, but there are so many heartaches with work and I wish I could talk about them, but you know I can't, life, love, everything. The dumbest things hit me and hit me hard, like realizing that for the rest of Tommy's life with me, I'm going to have to write epilepsy on his medical forms. When he starts school, his teachers will get medical info from the nurse stating that he has epilepsy. I drag that little hope balloon behind me with wishes and prayers that he will outgrow them, but how it was burst and drug down a little further when he had another seizure Monday night. As I type this, he's sitting on the floor with shoes on his hands clapping them together and how can I feel anything but hope when he's so healthy, so normal all the time, but. When people ask how he's doing, I never know how to answer, shuffling my feet and words, because of course he's fine when they ask. Of course he's a normal, healthy one year old, but. The seizures and the images I can't get out of my mind, his blue lips, twisted in a silent scream. I hate it. I know that blue lips are normal for his seizures. I know that they don't mean that he isn't breathing, but my heart shuddered on Monday while his little body shook in my arms and thought, nononono, this is wrong, so wrong.

Someone once told me that you can't rank pain. If you're having a bad day, a really bad day, you can't allow yourself to brush it off and say, Oh well, at least I still have a house/job/family, unlike some people. And while you should of course remember to count your blessings, you can't brush off your pain because someone else's pain is worse. I've caught myself doing that, thinking that I have NO RIGHT to be sad or upset at everything, because it could be so much worse. I know this. I do. But in the here and now of my days, I roll the word epilepsy across my brain a million times a day and it makes my heart hurt because of all the I don't knows. Will he outgrow his seizures? Or will he learn someday to tell when he's going to have a seizure? My brain misfires, too, with migraines and sleep paralysis, are his misfires related? Is it my fault? Will he have another seizure tomorrow? Next week? Next month? Never?

When will my heart heal?