A Field Trip and a Momma Melt Down

I’ve spent her whole life protecting her! I’ve nursed every cold, sat by her side and curled up with her in hospital rooms. I’ve encouraged her when she felt nervous or shy and watched her exceed the limits people have put on her.  I’ve raised her to be kind, respectful, loving and She’s a great kid, with a good heart.   Now she’s getting older and I’m having such a hard time with letting go.  She’s ready for the independence and I know I have to give it to her, but nobody told me it would be so damn hard!

Today she went on her first big field trip, at her new school, without Erich or myself.  I knew she was a little bit nervous, but excited and I didn’t want her to see my anxiety.  We got dressed and she ate a little breakfast.  I brushed her hair and helped her put it up into a ponytail. We talked about the rules and before I knew it she was out the door and on her way to school.

The door closed and I could feel my nerves churning.  My anxiety began to rise and fall like a rollercoaster and I couldn’t breath.  My tear ducts and gag reflexes unleashed on me like a tidal wave.  I was in a full-blown panic attack.  Funnily enough, my head and thoughts were clear… I know she can do this, I need to let her do this, she’s fine, you’re fine, etc… but my body was unleashing all the physical challenges that makes an anxiety attack the unpleasant experience it is.

I knew I couldn’t go into work like this… The tears were rolling down my face, I was an emotional wreck to say the least.  So I called work to let them know I’d be late and headed over to see the one person I knew would get it, the one person who has seen me through all my ups and downs,  someone who has been through it all with me and my three siblings, my mum.

I walked into her house and she could tell right away something wasn’t right.  She looked concerned as she rose to greet me and asked what was wrong?  I unloaded on her and a big smile spread across her face as she opened her arms and said “now you know how I felt those years you were in Italy!”  When I was little my father had taken me for what was supposed to be a two-week vacation, but  ended up being a two-year custody battle for my mum, a story for another time.  She gave me the biggest of hugs and made me giggle cry.  She made me a cup of tea, we talked about everything, she told me about experiences she’d had raising us and we laughed and cried together.  After a few more hugs  I was ready to head to work.

One of the many great thing about Meg’s new school is they kept me updated all day through text messages and even sent me a few pictures.  They told me I could call anytime to check on her, which gives a mom like me such comfort.  I’m please to say I didn’t call, but I did respond to a few texts they sent me.


I couldn’t wait to pick Meg up and hear all about her day and how much fun she had. She was excited to show me the prank snake she purchased with her tickets she won playing video games.  She especially liked a simulation snowboarding game and my heart swelled with joy when she told me she liked being independent, but would like to go back again with her daddy and I to try the bumper boats.  She’s gaining her independence, but she’s still my little girl and I think I will hold onto that for a little while longer. Till next time…

PS If you’re a mom who sometimes finds it hard to let go, don’t appologize for it.  It’s normal and sometimes it’s harder when your child has a disorder they deal with.  I can tell you Epilepsy has been a long hard road for us, with lots of ups and downs.  As long as you recognize and give them the independence they crave and you prepare them for the real world you’re doing a great job! x

Letting Go Is So Hard

This past Saturday we decided we were going to head out to our favorite corn maze, Sweet Fields Farms.  The weather was beautiful, a welcome change from the life sucking heat and humidity we’re used to. We were getting ready to walk out the door when our friends called to let us know the wait to get in was two hours! I’m not gonna lie, I  was a little disappointed, but we were happy they were doing so well.

Not to be discouraged, we heard about another little farm not to far from Sweet fields and we decided to give it a try. When we arrived at the Farm there were quite a few cars, but it didn’t look to crowded.  The layout of the farm was really nice albeit a little smaller.  We found a spot at some picnic tables nestled beneath a few large oak trees and it wasn’t long before Meg asked if she could go into the corn maze with her friends.

  

My stomach dropped as I tried to come up with excuses as to why she should wait, but  I could see in her eyes she really wanted to go!  Her body language was screaming please let me be independent and after laying down a few rules and making sure she and her friends had their phones I agreed to let her go.  She squealed with excitement and disappeared into the maze leaving me to ponder my worst fears…

What if she has a seizure?  What if someone tries to take her?  Stop! She’ll be fine! You need to let her do this!  My hubby had gone to get food and was unaware of the huge step I’d just taken. So I sent him a quick text message to let him know I’d given our daughter a taste of freedom. To which he replied “Okay!”

I’m sure our friends were talking to me at this point, but I couldn’t tell you a word they said. I could feel my anxiety starting to kick in and the helicopter mom in me wanted to jump up and run into the maze after her.  All the what ifs had kidnapped my concentration and were attacking my rational thought process.

About this time my hubby arrived with the food and I nervously devoured a really good fish taco.  It’s funny how time works in situations like this, the minutes seem to drag on for hours.  I looked at Erich and he knew my mind was ready to explode.

Then it happened… I saw her! I saw this big, radiantly independent smile on her face and all my crazy thoughts and fears were replaced with a sweet, warm and fuzzy feeling. It was validation! I’d made the right choice! She was walking in my direction, full of joy, scanning the area trying to remember what table we were sitting at.  I jumped up, smiled and waved like a lunatic. She saw me and ran over, all excited, to tell me all about her corn maze adventure and I absorbed every word.

After that I relaxed a little and asked Meg if she wanted to take a few pictures with me and head over to the petting zoo.  It made me happy when she belted out her usual “Sure!”

The petting zoo was small and the animals were charming.  We were able to pet goats, pot bellied pigs, rabbits, fluffy looking chickens and a super friendly llama.  I basked in her delight and we wandered out to some of the other photo op and game areas the farm had set up.  Meg held her own at tug-a-war and posed with a skeleton.  We even went back into the maze.  All in all it was a great day!

You hear people say don’t blink they grow up so fast and now I know exactly what they mean. When she was little I couldn’t wait for her to do and try new things, now I just want her to slow down and time to stop. I’ll leave you with this song till next time…

Disney Should Stand With Special Needs Families And Continue To Create Magical Memories

I remember the first time we took Meg to Walt Disney World! It was for Mickey’s Very Merry Christmas, she was 4 months old and I was really nervous about the trip.  Meg had started having seizures just three months prior and we had spent so much time in and out of the children’s hospital they had begun to know her by name.  It was our first trip as a family and  I remember talking to her epileptologist and asking him if we should go?  Where were the hospitals?  What if she were to have a seizure at the park?  How would we handle the people around us?  Our epileptologist reassured us Orlando had great medical care for children with epilepsy “just go… enjoy yourselves!”  So we decided to go with our family, who had originally planned the getaway!

I remember arriving late and being so nervous, so full of anxiety!  The parade had already started so we made our way through the crowd and found a spot where we could see.  Erich had picked up Meg and there were these big, bright, illuminated toy soldiers marching towards us.  I glanced over  at my daughter, so content in her daddy’s arms, and I could feel my throat start to tighten and my eye begin to well, she was so beautiful and she was smiling!  I wasn’t sad!  For the first time, in our short journey, I felt like everything was going to be okay!  For that brief, but precious moment I could let go of all the fear and anxiety and just fully submerge myself in her joy!  Tears streamed down my face as the parade came to an end and we made our way to the hot chocolate and cookies stand.  My  husband looked at me and I didn’t have to say a word, he embraced me and even though we were standing in the middle of thousands of people we shared a special moment, just the three of us!

Eleven years later,  we are more informed about epilepsy and aren’t quite as nervous or scared about taking trips to Disney!  We now know with most parks or venues we can always call ahead to find out where the medical facilities are located and what their protocol is in the event of an emergency.  We know seizures can be scary, but we also know Meg’s seizures can be managed with the right combination of meds and her epilepsy should never prevent us from getting out and enjoying life.

Lately there’s been a lot of controversy surrounding Walt Disney changing its Guest Assistance Card Program.  Our family could easily benefit from this program, being my daughter has epilepsy and I suffer panic attacks, but we choose not to use it!

Why?

Not because we don’t need it, but rather we’ve always felt there are other families who need it much more than we do, but knowing the program exists is comforting!

I’m deeply saddened and disappointed by the poor choices of a few and outcries of others who don’t fully understand the negative impact they’re having on special needs!  They don’t realize how their actions  can and will change the system in place that has worked so well for so many special families.  It is so important for Disney to send a strong message that they stand with special needs as they’re such a huge force and really set the standards and pave the way for other corporations.  In my heart I feel Disney will do the right thing and continue to make magical memories while still providing accommodations to special families.  As for us, we take each day/moment as it comes and try not to sweat the small stuff!  We see every day and milestone as a blessing and are thankful for those who don’t join the lynch mobs, take the time to educate themselves and fight for the rights of others.

Disney Meg1

Epilepsy The Thief

seizure

Epilepsy is a thief! It steals my daughter for minutes that seem like hours and renders me helpless.  It brings fear!  Fear of losing her, fear she’ll be bullied, fear of letting go, fear she’ll be treated as less, but…

epilepsy has taught me we are fighters, we are stronger than we thought and we will NEVER give up or lose hope!  We are determined to keep educating and searching until a cure is found and epilepsy is locked away for good.

Epilepsy is heartbreak, but it is also happiness in the people we’ve met who we might never have known without it!  Epilepsy is seizures, fears, tests, surgeries, medications, statistics, stigmas, tears, but it will not… it can not break me!

Origami Owl Epilepsy Locket

Did you know there are 65 million people living with Epilepsy worldwide?  Of those 65 million 375,000 live right here in Florida!  Epilepsy is a diagnosis usually given to someone who has 3 or more unprovoked seizures and a seizure, in its simplest term, is an abnormal electrical discharge in the brain.  Epilepsy is not contagious, it does not discriminate and it is not a disease!
With Purple Day (March 26th) not that far off, I thought what better way to get ready for it than to have an Origami Owl Fundraiser and have a portion of the proceeds go to the Epilepsy Foundation of Florida.  I also decided to have it online because I know there are purple warriors like us all over the United States and all over the world for that matter.
If you haven’t heard of Origami Owl, they offer a new and unique twist on personalized jewelry, beautiful customizable lockets with interchangeable charms! I first spotted theses lockets when, The Mom Buzz, a fellow member of The Tampa Bay Bloggers posted a link on Facebook and I fell in love with them.  I contacted Paula Hebner, the Origami Owl representative, and asked if she could make one specific for Epilepsy and I loved what she came up with.
oragam
There are so many choices! Perhaps you’d like a simpler locket with a few special charms for someone special in your life, maybe your mom, sister, daughter or a good friend!
ora
I am so excited to share this amazing line with you all and it’s so easy to get started:
1) Shop online and place your order at http://CreativeLockets.OrigamiOwl.com/
2) Click HERE or on one of the picture above and comment on this “event” that you placed an order, and make SURE to include your order number, so the donation gets credited to the Epilepsy Foundation of Florida.
If you have any questions, please do not hesitate to ask Paula Hebner, my Origami Owl representative, or you can contact her via email at phebner@cfl.rr.com or on Facebook at https://www.facebook.com/#!/events/411911052229915/
Some helpful tips if you run into ordering issues:
*Use Firefox or Chrome browsers (the website does not like IE or Safari)
*Use a physical PC. Mobile/tablet orders can be wonky.
*ensure your correct city is chosen from the drop down if your zip code covers more than one city *choose the shipping option you would like.
*clear your cookies and cache
~Unfortunately this fundraiser is only available in the United State at this time~

Let’s Talk About It…

It’s November! You know what that means… It’s time to talk about it!

Talk about what? 

Talk about Epilepsy of course!

Our daughter Meghan has Epilepsy so it’s important to us to spread the word about Epilepsy! 

We want to educate YOU! 

Did you know there are 65 million people worldwide that suffer from epilepsy or a seizure disorder of some kind?

Over 3 million of those people live in the United States and 300,000 of them are children under the age of 15!

Those are pretty astonishing numbers! 

Let me put it another way:

The number of people living with epilepsy or a seizure disorder is GREATER than the number of people living with Multiple Sclerosis, cerebral Palsy, Muscular Dystrophy, and Parkinson’s Disease combined!

You know what else is crazy…

One third of those 3 million people  live with uncontrolled seizures, because right now there isn’t a treatment available to them that works and for 6 out of 1o of those people the cause of their seizures is unknown.

So what do I want you to know about epilepsy?

I want you to know:

  • Epilepsy is a medical condition that is not contagious, but talking about it should be!
  • A person having seizures is not possessed by the devil!  A seizure is an electrical misfiring in the brain and can cause many symptoms, from convulsions and loss of consciousness to some that are not always recognized as seizures by the person experiencing them or by health care professionals: blank staring, lip smacking, or jerking movements of arms and legs. ~Epilepsy Foundation~
  • NEVER put something in a person’s mouth when they are having a seizure! Contrary to popular belief a person can’t swallow their tongue.  You are more likely to get hurt or hurt the person having the seizure, by trying to force their mouth open.

*Video courtesy of The Talk About It Foundation

  • Treat a person who has seizures no differently than how you’d treat any other friend or family member!
  • If you ever have a seizure find yourself an epileptologist you feel comfortable with and talk about your options.  You may only need a small amount of medicine to control your seizures! However there are other treatments available like VNS and even surgery.

Most important TALK ABOUT IT!  Don’t be afraid to ask questions or go online, there are lots of really great places to get information:

So are you gonna help me get the word out?

Cool!

Here are some tweetable facts courtesy of Ken Lowenberg of The Talk About It Foundation.  Use the hashtags #EpilepsyAwareness

#Epilepsy  #TalkAboutIt

If someone is having a seizure, NEVER put anything in their mouth! #Epilepsyawareness

If someone is having a seizure, NEVER hold them down or restrain them in any way! #epilepsyawareness

#Epilepsy is NOT Contagious but talking about it should be. #epilepsyawareness

#Epilepsy is NOT a mental illness. #epilepsyawareness

65 MILLION people around the world live with #epilepsy.#epilepsyawareness

NEARLY 3 MILLION people in the United States have #epilepsy. #epilepsyawareness

BETWEEN 4 AND 10 OUT OF 1,000 people on earth live with active seizures at any one time.#epilepsyawareness

There are 200,000 new cases of #epilepsy in the United States. #epilepsyawareness

ONE-THIRD of people with #epilepsy live with uncontrollable seizures because no available treatment works for them. #epilepsyawareness

For 6 OUT OF 10 people living with #epilepsy, the cause of their seizures is unknown. #epilepsyawareness

50,000 people die from epilepsy-related causes in the United States every year. #epilepsyawareness

90 PERCENT of people with #epilepsy live in developing nations. #epilepsyawareness

9 OUT OF 10 people with #epilepsy living in Africa do not receive proper treatment. #epilepsyawareness

Be Safe And Seizure Smart On Halloween!

We love Halloween!

Dressing up, going door to door, seeing all the different costumes people come up with and walking up to the spooky decorated houses is so much fun!

However, we also have rules to keep us safe and seizure smart while we’re Trick or Treating!

Here are a few things to remember to keep your kids safe and seizure safe:

  • Make sure you don’t skip your seizure medication.
  • Have a cell phone and emergency meds on hand if you are walking long distances.
  • Trick or treat with a friend of family member familiar with your seizures.
  • If you are photosensitive avoid houses with strobe lights.
  •  It’s a good rule of thumb to check all your candy before eating it, but definitely don’t eat it if you’re on a restrictive (Ketogenic or modified Atkins) diet.

A great suggestion I got from my sister-in-law Denise over at RunDMT for kids who are unable to eat their candy due to dietary restrictions:

  • Check out the Halloween Candy Buy Back Program!  Some dentists will buy back your kids candy and then ship it overseas to the troops!  So not only will your kid be making money… they’ll be helping out our military overseas! It’s a win win!
  • Wear reflectors or glow necklaces so cars can see you.
  • Always walk on the sidewalks when possible.
  • Always look both ways before crossing the street.
  • NEVER enter a home for candy!

It’s important to be safe and seizure smart, but it’s also important to make sure you have FUN!

Here are a few fun facts about Halloween I found over at the Epilepsy Therapy Project:

  • The celebration of Halloween started in the United States as an autumn harvest festival. In pioneer days, some Americans celebrated Halloween with com-popping parties, taffy pulls and hayrides.
  • In the late nineteenth century, with the large influx of Irish immigrants into the U.S., Halloween became associated with ghosts, goblins and witches.
  • Jack-o-lanterns are an Irish tradition. In Ireland, oversized rutabagas, turnips and potatoes were hollowed-out, carved into faces and illuminated with candles to be used as lanterns during Halloween celebrations.
  • The pumpkin originated in Mexico about 9,000 years ago. It is one of America’s oldest known vegetables. Pumpkins generally weigh from 15 to 30 pounds, although some weigh as much as 200 pounds. The majority of pumpkins are orange, but they also can be white or yellow. They are rich in vitamin A, beta-carotene and potassium, and their seeds provide protein and iron.

Facts taken from Candy USA: http://www.candyusa.org/Classroom/Facts/default.asp?Fact=Halloween