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.

Blueberry Banana Bread

I was in the mood for a something a little sweet the other day! I had a few over-ripened bananas that kept staring up at me from my fruit bowl every time I walked into the kitchen! I swore I was going to use them in a smoothie, but alas they were even a little to ripe for that! I grabbed The Joy Of Cooking, my go to cookbook, and looked up their easy Banana Bread recipe to see if I had all the ingredients I needed?

  • 1 1/3 cups of all-purpose flour
  • 3/4 teaspoon salt
  •  1/2 teaspoon baking soda
  •  1/4 teaspoon baking powder
  • 5 1/3 tablespoons unsalted butter
  •    2/3 cup sugar
  • 2 large eggs
  • 2 very ripe bananas
  • 1/2 cup of coarsely chopped walnuts or pecans

Yep! I had everything except the nuts!  Hmmm… what to do? What to do?  For some reason blueberries kept popping into my head, but I didn’t have any blueberries? I looked through my cabinets and came across Ocean Spray Blueberry Craisins! Will they go? Ach what the heck let’s try ’em!  I set my oven for 350 degrees and whipped together the ingredients!  I poured it all into a small loaf pan and popped it into the oven for 50 mins.  The result… A yummy, scrummy blueberry banana bread that goes perfectly with a cup of tea!

For more delicious recipes check out Food Fight Friday over at Run DMT.

Hooray It’s Purple Day!

Purple Day started with a little girl named Megan Cassidy and her dream to spread awareness so that others with Epilepsy wouldn’t feel alone!  Within a few short years and with the help of social media sites like Facebook, Twitter, Pinterest, etc… her dream has become a global reality!

So what exactly is Purple Day?

It’s a day (March 26th) when people around the world wear purple or create purple projects within their community to support someone they love and/or talk about epilepsy!  Last year my daughter’s cousins threw her a purple picnic with lots of purple treats!

This year we’re making purple cupcakes, having another Purple Day Picnic and talking about what to do if you ever come across someone having a seizure!

So… I thought today on the blog I would post a first aid guide to seizures!

So here goes…

What To Do In The Event Of A Seizure

1.  First check to make sure the person you believe to be having a seizure isn’t choking.

2.  If the person having a seizure has fallen and you can see they are visibly hurt call 911.

3.  Try to remain calm, even though they can be scary to witness, most seizures only last a few minutes. Time the seizure, if it happens to last longer than 5 minutes or the person has multiple seizures call 911.

4.  Do not hold the person having a seizure down, even if they are thrashing about, and DO NOT PUT ANYTHING IN THEIR MOUTH – they will not swallow their tongue!

5.  Try to make the area around them safe by placing something under their head and removing any objects that could hurt them.

6.  If you can try to turn them on their side as this will help keep their airway clear of saliva or incase they get sick during the seizure.

7. Try to pay attention to what they are doing! Are they swallowing repetitively? What body parts are moving? Are their eyes moving in a certain direction? If it’s a persons first seizure all this information can help an Epileptologist!

8.  Check for a Med Alert bracelet/necklace! Sometimes these items will display allergies or give information about who to contact!

 9.  Often times a person coming out of a seizure is still in a confused state, they may not realize what happened, be a little out of it, embarrassed or scared.  It’s important to talk to them calmly and let them know they are safe.

10.  Make sure the person is fully alert before you give them food, drink or leave them.

Knowing this information is important as there are over 3 million people in the US who live with epilepsy, 50 million people around the world and 200,000 new cases every year!

There are also 50,000 epilepsy related deaths per year!

So what can you do on March 26th to support Purple Day?

Here’s a list:

Get seizure smart and know what to do in the event someone has a seizure

Wear Purple

Tweet a fact about epilepsy and add the hash tags #PurpleWave2012 #PurpleDay

Talk About It

Blog About It

Have a purple picnic

Attend a Walk or 5k in support of epilepsy

Do a penny drive with your school to raise funds

See if your school or work will have a ditch the duds and wear purple day

Most importantly treat a person with epilepsy no differently than you would treat a loved one or a friend!