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

Appearances Can Sometimes Be Deceiving!

I once told a good friend of mine who has five children, two with infantile spasms, I thought (still think) she is an amazing woman! I praised her because her journey with Epilepsy has been much harder than mine and yet every time I see her she seems to have it so together; she’s always had such a strong faith and just an air of strength about her.   It wasn’t until she sent me a heartfelt letter laying out all the truths and fears she had and would face in her lifetime that I understood we weren’t so different! We actually shared a lot of the same insecurities and fears, she was just a little better at hiding it on the outside than I and truth be told that letter only made me respect and love her all the more!

Let me be the first to say I have insecurities, I definitely have fears and I’ve become an expert at the what if… game!  There are times I’ve doubted my strength and felt as though my faith was broken. I’ve had moments where I’ve felt I needed much more than I’ve supported my family and friends. I’ve been hurt by a person’s insensitive comment and resisted the urge to tell them exactly what I thought and instead tried to reason with and educate them.  I’m all to familiar with that sucker punch in the gut, where you feel helpless, can’t catch your breath and all you can do is cry, because it’s the only thing you have left in that moment!  However, I’ve also come to understand it’s during these moments, after that release, we’re able to pick ourselves up, dust off and draw strength from places we didn’t even know existed!  We see our child’s smile, the comfort they find in us, their innocence and realize we have to keep moving forward no matter how difficult it might seem, because they need us and simply put we love them!

I always envied how strong I thought my friend was, but I now understand her need to make everything look okay on the outside. Without trying to sound to much like Lady Gaga, I have come to appreciate that we all have a poker face of sorts, not necessarily because we want to, but sometimes because we have to! The alternative would be to bare our souls and share how vulnerable we really are!  I wonder though, is that such a bad thing?  Don’t get me wrong, I don’t think we should walk around with a dark cloud over head, telling every stranger we meet all our life afflictions!  But when and if we decided to share our true emotions with someone in similar circumstances, I think it will enable us to connect and empower each other to become stronger, because we’ll realize all those insecurities and fears we’ve been feeling aren’t a lack of strength at all, in fact they’re quite normal!

A Dolphin’s Tale Inspires Compassion and Strength

Two weeks ago we took Meggers to see Dolphin Tale, a movie about the discovery of a young dolphin caught in the ropes of a crab trap which would eventually lead to the loss of her tail and her incredible journey of learning to live without it.  Although some of the story was dramatized for Hollywood, it is mostly based on a true story and one that resided very close to where we call home.

Harry Connick Jr., Morgan Freeman, and the kids Nathan Gamble and Cozi Zuehlsdorff will keep you captivated throughout the movie and you’ll soon find you have a special place in your heart for Winter and the people who work at Clearwater Marine Aquarium.

My husband and I both found ourselves choked up at how Winter’s journey has inspired and connected with so many amputees and children with various disabilities.   I think we both silently related our own daughter’s struggle with epilepsy to the story and found it to be a heart warming tale of compassion and strength.

If you haven’t seen it we would definitely recommend it!

So my music pic for today is Safe by Westlife!

  Meg decided we should visit Winter the dolphin, so this past weekend took a drive down to the Clearwater Marine Aquarium and we were quite excited to see the place packed with people.   We arrived just in time to see… well for Meghan to get on her daddy’s shoulders and see Winter and Panama’s show.

Winter happily displayed her tail and was playful with her trainers.

If you plan on visiting don’t worry if the show is packed out there’s plenty of time to get up close and personal with Winter, Panama, Hope Nicholas and all of the residents at Clearwater Marine Aquarium!

The trainer in these photo’s is called Cami and she was really sweet.  We told her how Meg had brought little Mrs. Scorcher, her class pet, with her and asked if she would take our camera and little Mrs. Scorcher to get a photo for us.

She did one better… she let Meg come over and get a picture with her and Panama.

She also let little Mrs. Scorcher wear Winter’s actual prosthetic tail.

If that wasn’t enough to make Meg smile from ear to ear, Cami shared a little secret with Meg…

  She told her if she went over to visit Hope in her tank and held up little Mrs. Scorcher in the window, she would come see her as she loves to look at things.

She was right…

Hope was curious and Meg was beyond excited to see her up close and personal.

We had such a fun day!

We decided to see if Winter might like to see Mrs. Scorcher too!

It was kind of funny really…

Here we think Winter catches sight of Mrs. Scorcher.

she seems to roll over to take a better look!

and then nonchalantly drifts over…

closer…

… and closer

… till she was hanging out right in front of us!

We really enjoyed our visit to the Clearwater Marine Aquarium (CMA), they really do some great work over there.

A big thank you to the trainer Cami and an intern named Dana for taking the time to make our trip special!

We learned a little something about each of the animals that reside at CMA as well as a little bit about the ocean and wildlife in general.

Meg for example has decided she’s not a fan of Crab Traps!

However, our family is and forever will be fans of wildlife and people who spend their time trying to protect it!

If you would like to adopt one of CMA’s residents or make a contribution to help please visit www.seewinter.com.