Talk About It Weekend

The only experience with seizures I’d had, prior to Meghan’s journey with epilepsy, were with a friend in high school.  I remember staying the night at her house and being woken up by her having a seizure.  She had never told me she was epileptic and I wasn’t sure what to do!  I ran to get her brother who came in and explained what was happening to me.  After that I always felt like I needed to look out for her and there were a few occasions where I did have to call an ambulance and/or her mom.  I never thought of her as a girl who had seizures, she was just Faith and we were pretty good friends throughout our senior year of high school.  Unfortunately, after high school she decided to move to Indiana and we lost touch!  Maybe meeting Faith was where my actual journey with epilepsy began or maybe it was just coincidence? I don’t know? But it’s something I ponder every now and then.

After Meghan started having seizures it was really hard to find support and often times we felt alone!  Perhaps it was because there wasn’t a huge need for support in our area or maybe it was because we didn’t know where to look? I found a few online websites/forums and posted once or twice, but I didn’t feel a real connection to any of them.

It wasn’t until after I joined Twitter in 2008 and saw a tweet from Greg Grunberg about the Talk About It website that I felt some sort of connection!  Maybe I was awed because he was an actor from a show I watched for a while? I’d prefer to think I was intrigued because he was a parent, much like me, the only difference being he had the audience and resources to do what I had really wanted to do for the last six years… Talk About It!

Okay! Yes yes I’ll admit I was a little star struck too! *grin*

It took a while for the website to be up and running, but I was really happy once it was!  I joined and met Ken Lowenberg, a great guy who facilitated the online support group!  Ken often made the group feel as though it was the heart of the foundation; including us on upcoming events and helping us break the ice and get to know each other.  It really felt great being able to talk with people in real-time.  Meg was even able to Skype with another young girl her age who also had epilepsy.  So it was a no brainer (pun fully intended) when Ken told us about Talk About It weekend that we were all excited and wanted to participate in any way we could!

I found out the EFOF (Epilepsy Foundation of Florida), who cover my region, were going to be a part of the Talk About It weekend and after a few emails back and forth with Heather Steele Hernandez I was told we could participate in my community!  It was also around this time I found out EFOF had started a support group at one of our local hospitals! When it rains it pours people!  Heather hooked me up with a lady who helped run the support group and she in turn put me in touch with another lady and before I knew it we had a date to Talk About It! September 9th we would be talking about epilepsy right down the street from where I live.

When the morning of Sept. 9th  came I was a little nervous! I had never participated in something like this before and I wasn’t sure how we would be received! Not to mention it had been raining most of the night and there was still a slight drizzle.  When I arrived at our location Tina had already set up! So I snapped a quick picture and waited for the rest of our volunteers to arrive.

Finally we donned our sexy, little yellow jackets, armed ourselves with gobs of information, discussed our strategy and got into position.

The first person I tried to talk to brushed me off and made me feel a little anxious, but I didn’t let it prevent me from the task at hand.

My friend Lillian and I couldn’t believe within the first hour, at least ten of the people we’d talked to had either experienced or dealt with a seizure.

We were also pleasantly surprised so many people were willing to listen and really take in what we were saying!

 It was amazing!

I was definitely proud of my community!

Even though it had started off a rainy day we ended up raising over $240 and giving out over 300 pieces of literature!

I can honestly tell you we don’t feel alone anymore!

There are many communities out there doing their part to raise awareness and funds for epilepsy research and with the help of social media they’re reaching more and more families! is one of those organizations and it has helped our family build friendships with some amazing people and for that I’m truly grateful!

A big thank you to Talk About It, The Epilepsy Foundation of Florida, Lundbeck  and Publix for making this weekend possible and allowing me to be a part of it!

A Seizure at School

Last Tuesday I got a call from one of the nurses at Meg’s school telling me my little girl was having a seizure.  The nurse couldn’t give me a lot of information, she told me a boy from the class had just come down and the other nurse had just left to go treat her.

“We’re on our way!” is all I could say before hanging up.

My mind began to race though a gazillion questions

Did she fall? Was she in the classroom? Was she with an adult? Oh god the stairs! Did it happen in the lunchroom?  Was she hurt?

I could feel the back of my throat start to tighten and the tears start to well up in my eyes.

Stop it!  You have to keep it together!

I could feel anxiety starting in my chest and I was so glad my husband was home to drive and keep me grounded. Half way to the school the phone rang again and this time the nurse was able to tell us to head straight for the classroom once we got there!

It didn’t take long for us to get to Meg’s school, but it felt as though it took much, much longer!  As we walked up the stair to her classroom, my heart was still racing, and I just wanted to see my baby girl.  When we entered the classroom Meghan was lying on the floor, with the nurse by her side, throwing up.  I sat down on the floor in front of her to let her know we were there and to make sure she wasn’t still seizing.  Her eyes were a little dilated, she looked dazed, but she was definitely coming out of the seizure.  I scooped her up, held her in my arms and then I saw her teachers face, she was visibly shaken by the whole event.  She kept looking at me and saying… God Bless you! God Ble… I had no idea! I have such a new found respect for you! Again I could feel my throat tighten, I told her Meg was fine and asked her if she was okay.  I could see tears in her eyes and the concern on all of their faces and it felt good to know so many people were caring for my daughter.

It’s crazy how time can pass when you’re dealing with an emergency, sometimes minutes can seem like hours and yet, other times, it can feel like everything has happened in seconds and before you know it 20 minutes have gone by.  I think this is why there was a little confusion about how long Meg had seized!

From what I understand, the kids had just come back from lunch and they had put up tri-fold partitions to get ready for practice testing.  The teacher had noticed Meg’s partition didn’t look right and had tried to get her attention, but Meg had not responded.  Upon standing the teacher realized that Meg was having a seizure.  The kids were lined up and led out! Thankfully they didn’t really see much because of the dividers.  Meg was moved to the floor and laid her on her side.  From what the teachers described everything sounded characteristic of Meg’s normal seizures.  I gave Meg’s teacher a hug, thanked everyone and we headed home!

Once home we put a call in to her neurologist and gave Meg something for her headache. She slept for quite a while, which is pretty normal after having a seizure. By supper time Meg was more like herself, but we kept her home an extra day to make sure. It was so nice to receive calls and messages from the teachers and her friends; I honestly think it made her feel a little less nervous about it all.

Two days later, she went back to school and it was so hard to let her go!  Of course, I know things needed to be as normal as possible for her, but as her mom I just wanted to wrap her up in my arms and keep her home! I’ll admit I did walk her to class the first day back!  Her teachers all seemed confident and told me they were ready if she were to have another seizure.  Her friend had made cupcakes for her coming back and the kids went on as if nothing had happened, which I think was really important for her.

I can’t say I’m not nervous about another seizure happening at school, this was her second, but it helps to know her school is prepared and willing to stand by her and do whatever they can to make sure she’s safe.

Savage Attack on Epilepsy

I read an article in the Huffington Post this morning that just made my blood boil! It led me to believe that right-wing radio host Michael Savage doesn’t know his arse from a hole in the ground when it comes to Epilepsy!

Putting the ongoing heated disputes between Republicans and Democrats aside! Trying to use epilepsy as the reason Roberts upheld the Affordable Healthcare Act and trying to discredit him based on idea that his epilepsy might have made him a little slow or cognitively challenged is appalling! Obviously he was not to slow or cognitively challenged to go through the rigorous schooling needed to become a Judge or to be nominated as the 17th Chief Justice of the United States! As a mom of a child with epilepsy all I can say is how very dare you Mr. Savage!

There are many accomplished people who have epilepsy! What’s unfortunate here is the fact that you are perpetuating a myth in suggesting a person who has endured a seizure or who takes medication for epilepsy is not capable of making an informed decision! It is hard enough for the epilepsy community to dispel the myths and stigmas that surround epilepsy and you sir are not making it any easier! You should be ashamed of yourself for such an attack!

In the future, as you are scavenging around for information that you feel might make your political point and/or resonate with your listeners please take into consideration what you are planning to say and those you are affecting in doing so!

Michael Savage Links Justice John Roberts’ Epilepsy Medication To Obamacare Ruling

You can find some great information and get to know the facts and myths associated with epilepsy by clicking on this LINK or visiting Talk About It or the Epilepsy Foundation websites!

Random Ramblings and Fears

Today I feel like an emotional basket case! I haven’t blogged in a while and it’s not for lack of wanting to it’s because I didn’t and still don’t quite know how to express what I’m feeling! There’s so much going on in my personal life and I tend to have a hard time separating my feelings into categories! Family… check! Epilepsy… check, check! Instead they all mull around in my brain and make me feel overwhelmed and a tad over emotional!

Meghan has been doing great all things considered! I know I’ve mentioned to some of you about the remedial reading course she’s taking in order to be promoted to 4th grade. She loves her teacher and she seems to be progressing nicely! My only worry is they don’t have a nurse on staff or someone who can administer diazepam if she were to need it. Luckily we live literally less than a block away from the school where the class is being offered! Not that it makes it any easier, I stress about it constantly, but I can get there in about a min if anything were to happen! I am definitely going to approach the school board about making sure someone is available for those programs in the future.

Last week Meg had another seizure! It was upon waking and started out with the usual swallowing episodes, but quickly turned to what sounded like choking and she started to turn blue. I know these things have a tendency to go hand in hand with seizures, but it didn’t make it any easier to watch. I’m used to dealing with focal seizures that progress into leg and arm twitching, her blank stare, random noises, but the last few she’s had are much more violent with thrashing, tongue biting, choking sounds and it kills me! I know she doesn’t remember them, but I can’t seem get them out of my head and I’m petrified. I’m scared to death of SUDEP and the seizures not stopping! I feel like lately I’ve been in a constant state of worry and fear. Recently the doctor suggested and scheduled a PET scan and told me these are generally done to determine whether or not your child is eligible for surgery.

Surgery… another thing that scares the bejeezus out of me! Will it work? Won’t it work? How do I explain it to her? How the hell do I get through it and stay strong if she is a candidate? Will she come back to me the same way she went in? What happens if something goes wrong? What if it doesn’t work? What if it does?

STOP! Take a deep breath! You aren’t there yet! One day at a time! Stop living in the what ifs and live in the present! It’s hard to do sometimes, but I feel as though I constantly have to remind myself to do this! It feels like I’m always preparing for the worst. When we go out, in my head I’m thinking, where’s the safest place to take her if something happens so we can administer her rescue meds? What if someone tries to capture it on a cell phone?

Stress? Yeah! I feel as though I’ve come to know her quite well.

So on days like today, when Meg is at school and I feel like a complete and utter emotional nutcase, I realize I need to take a few moments to let it all out! I have to allow myself, at least for few moments, to take off the happy mask and release what I’m feeling from that box in my head labeled Place Emotions Here! It doesn’t make me weak! It doesn’t make me crazy! It doesn’t make me a bad mom! I think it allows me to process what I’m feeling and get my feelings into check so I can be level headed and taken seriously when it comes time to make decisions, meet with people or answer question. It also allows me to release all those fears and live in the present with my daughter, to laugh with her and teach her life lessons.

I’m not perfect, I’m still learning how to manage all the emotions that come along with epilepsy let alone the ones associated with just being a Mom! I can tell you I’m beautifully flawed and I say this because I know the emotions I feel come out of a place of complete and utter love for my child! I still get nervous and scared, but I’m also a fighter! I want my child to live and to succeed to the very best of her ability! I may cry and beat myself up every once in a while and I might have to learn through mistakes along the way, but I will do everything in my ability to make sure that happens.