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!

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.

Our First Run/Walk For Epilepsy!

I’ve always wanted to attend the national walk for Epilepsy held annually in DC, but each year something seems to come up that prevents us from going!  We were unable to attend again this year due to hubby’s work schedule and because finances were tight! So… when my sister-in-law told us about a local 5k/1 mile fun run The Epilepsy Services Foundation hosts each year called the Hare Racing Experience we signed up right away!  We forwarded the race link on to our family and friends and soon we had a nice little group joining us for the race!

On the day of the race we all had a case of butterflies, but our jitters quickly disappeared and were replaced with excitement when we saw the number of people who had shown up for the race!

It didn’t take long for my husband to find Meg’s Aunty R, Uncle J, Pop pop who were all gearing up for the start of the 5k race!

This was hubby’s first 5k and we were so proud of him!

 Meg and I wished daddy luck, snapped a quick picture of him holding our Talk About It sign…

and then they were all off and he was lost in a sea of runners!

Meg and I headed off to the track field to find her cousins who would be participating in the 1 mile fun run with us!

The time passed so quickly and one by one our group crossed the finish line!

My anxiety was up and down throughout the day, but I was determined to push through it!

I wont lie there were definitely moment I wanted to run and I don’t mean in the 5k or the 1 mile, I wanted to sprint like a gazelle to the nearest exit!

I managed to keep it under control and before I knew my nerves were gone and we were lining up for our 1 mile fun run!

Meg was excited her uncle and cousins were running with her!

She flashed me a smile and then she was off…

and she did really great!

before I knew it she was lapping me!

She crossed the finish line with her cousins and high-fived her Aunt and Uncle!

I was so proud of my baby girl!

Everyone did a great job and we feel truly blessed to have such caring family and friends that are willing to talk about it!

Music by Rusted Roots

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!