The Hardest Conversation

This is long so please bare with me!

Seeing all the posts about Cameron Boyce conjured up a lot of emotions, maybe because I knew Meg would be seeing it too and now she’d be exposed to some of the ugly truths that were out there and associated with epilepsy. It made me reflect a lot on our own journey and how things have evolved and changed as she’s gotten older.

When I opened my phone and read the news I froze. It hit me like a punch in the gut! My heart began to ache as it often does when I see these tragedies in some of the groups I’m in and when I think about how some of the foundations like Danny Did and Chelsea Hutchinson came to be.

I wondered how Meg would react to the news? When she was little it was easier to shield her and keep everything happy and positive, but now she’s almost 17, the information is out there, and she was going to see it!

We live in a social media culture where a smorgasbord of information is available at our fingertips. The internet is unedited, its raw and it can be pretty harsh. News like Cameron Boyce’s death is often splashed all over the internet in mass amounts without any thought for who might be reading it. People make assumptions without facts and lose filters they’d normally have in person. Emotions run high and it can be overwhelming.

I’m not speaking sanctimoniously, it’s been a learning moment for me too, I’ll admit I’ve participated in this culture. We see a post and are quick to post our fears not thinking who might be on the receiving end. At the same time the good parts of social media aren’t lost on me as I know the power and global reach of social media when it comes to raising awareness. A double edged sword I guess?!

When Meg was little we advocated hard, I was fiercely protective and unapologetic for it. We were in and out of hospitals, and I wanted to protect her in any and every way I could. I wanted to learn everything and put all that information out there, because in my mind the more people knew about epilepsy the safer she was. I took a lot of flack from moms who said a lot of hurtful things and gave very critical, unsolicited advice. I was often written off as hypersensitive or as a “helicopter mom” that one was used a lot! The truth is, most of the time, I really just needed friends. It can be a difficult journey and as parents we beat ourselves up plenty, wondering if we’ve made the right decision on the meds, the procedures, the doctors, the hospitals, the care, etc… If you really want to help someone be a friend, be inclusive and don’t judge, but I digress!

We made some unbelievably supportive friends online (one of the most positive parts of social media for us) and we even got to meet a few of them when we ventured to D.C. to participate in the National walk for Epilepsy, but as Meg got older and as kids became assholes (like they do in middle and high school) Meg decided she wanted to be a bit more private and I respected her wishes.

When we told Meg about Cameron she thought it was a hoax, but we told her his family had confirmed and we saw her mind start to churn. She’s been a huge fan of Cameron since he was on Jessie and most recently as Carlos in Descendants. We knew throughout the day she would be bombarded with all the posts and comments. She was going to have questions!

“Mom he died from a seizure!”

I thought carefully about how to respond.

I explained that a seizure doesn’t always mean epilepsy. There are many addictions and other disorders that can result in seizures and told her we shouldn’t assume anything.

A few days later it was confirmed that Cameron did, in fact, have epilepsy. We talked about how there are many different types of epilepsy, the importance of taking meds and safety. We discussed how we wish we’d known Cameron was epileptic and I explained that while some people choose to use their fame as a platform to raise awareness others like their privacy.

We continued to have little chats here and there, but as the articles seemed to quiet so did Meg’s questions and up until today she seemed okay with it all!

Today was hard!

Meg saw a post from one of Cameron’s co-stars in Descendants. Apparently Descendants 3 comes out tomorrow and the co-star has posted a tribute.

“Mom Cameron had epilepsy and he died from a seizure…” she paused and rubbed her face. I could tell she wanted to ask me something, but was struggling.

“It’s okay baby you can tell me what your thinking.”

“I just don’t know how to say it!”

I knew what she wanted to say, I had been dreading this moment.

I took a deep breath and said you’re wondering because Cameron had epilepsy and he died from a seizure if the the same could happen to you?

She looked at me like I’d lifted a huge weight off of her and hugged me really tight!

“He was 20 mom!”

I’ve always been honest with her and as hard as I knew it was going to be I had to finally tell her about SUDEP (sudden unexplained death in epilepsy). I explained that it was rare and just because this had happened to Cameron didn’t mean it would happen to her. We don’t know everything that led up to Cameron’s death, if he’d missed his meds, if he’d been drinking, etc… we talked again about the the different types of epilepsy, the importance of taking meds and keeping your doctor informed of changes. I told her how all disorders have risks from diabetes to heart disorders. Her eyes welled up…

“There are days I don’t mind being epileptic and there are days I hate it, today I hate it!”

My throat tightened!

“I know! I wish so much I could take it from you, but this is one thing I can’t fix baby I’m so sorry!”

I could feel my eyes starting to well up too.

We both hugged each other and cried. In that moment I just wanted to take it all away, all her pain and all her fear. I don’t know if I handled it well? How do you handle such a hard question? So I did the only thing I could in that moment…

“Oh my goodness, Meg your crying and I’m crying and it’s raining, we’re a hot mess!”

She threw her head back and laughed glad, I think, that I’d injected a little humor into the conversation. She looked at her watch.

“Why are you looking at your watch?”

Meg smiled at me through her tears.

“I was just thinking it would be funny if daddy walked in right now!”

“Oh my gosh, right!”

We hugged some more and Meg grabbed her phone. I was glad we were able to laugh a little and she seemed content with everything we’d talked about.

“I love you Mommy!”

“I love you too!”

We snuggled and watched some videos together and while it had been a difficult moment my heart swelled with pride at how well she handled everything.

Payin’ It Forward With Pumpkin #AJO

It's Pumpkin Season at Dunkin (coffee, iced pumpkin coffee, and pumpkin donut)

~ Photo Provided by Dunkin Donuts through Tilson PR~

Nothing quite says fall like Pumpkin!  So I was super pumped when my friend Teresa over at Making It All Work invited me as her plus one to sample some delicious and fabulous fall treats at Dunkin’ Donuts this past Tuesday!  I have to tell you it didn’t take much persuasion as I’m a lover of all things pumpkin and it turns out pumpkin is what was on the menu!

We arrived and were greeted by  Maru who asked us if we’d downloaded the Dunkin’ Donuts app yet?

Um… but of course!

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Apps rock!

Especially when they give away free stuff and this particular app does just that! Not only does this app give you special offers, it also helps you find the nearest Dunkin’ Donuts!  AND it doesn’t stop there…  you can also buy a Dunkin’ Card and pay for your purchases and/or buy gift cards to send to your family and friends for the holidays!  How cool is that?!

I know very cool right!

After we discussed the app we met Maria the store manager!  I was so impressed to learn that Dunkin’ Donuts actually allows its staff the creativity to come up with a donut of their own.  Maria’s particular store, located at 4012 Armenia Ave in Tampa, came up with a Latin infused Guava filled donut topped with a vanilla cream icing and toasted coconut.  I’m not a huge fan of Guava, but I have to say it was really good!

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My mouth was watering and my taste buds were dancing when Maria started bringing out all of the pumpkin items.

First we sampled their new Pumpkin Pie Donut

Pumpkin Pie Donut & Coffee

~Picture provided by Dunkin’ Donuts through Tilson PR~

This was one of my favorites donuts, filled with a pumpkin pie flavored buttercream and then topped with a white icing and sprinkled with graham crackers!

Next we sampled the pumpkin donut and their little pumpkin counter parts the munchkins!

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I was begged to bring home some of the pumpkin munchkins by my little one who informed me I was “The BEST mom EVAH!” as she sat and ate them!

Win!

Oh wait…

Did I tell you we also got to try their different pumpkin coffees?

Pumpkin Beverage Line Horizontal Lifestyle

~Picture provided by Dunkin’ Donuts through Tilson PR~

I couldn’t make up my mind which was my favorite:  The Pumpkin Iced Coffee or the Pumpkin White Chocolate Latte!  I guess, because the weather can run hot and cold a little further into the season I could go with the Latte on the cooler mornings and the Iced Coffee when it gets sunny and hot!

My all time favorite thing pumpkin is Dunkin’ Donuts Pumpkin Muffin!

Pumpkin Muffin

~Picture provided by Dunkin’ Donuts through Tilson PR~

I must have one of these bad boys every year when pumpkin season rolls around!  As a matter of fact I may end up going out and getting another one today!

If for some reason you’re not in a pumpkin kind of mood, but you want something a bit more hearty for breakfast Dunkin’ Donuts also offers the Angus Steak Big N Toasty!

Angus Steak Big N' Toasted

~Picture provided by Dunkin’ Donuts through Tilson PR~

We were given samples of this sandwich and I can tell you a few of us took a second sample because they were really tasty!

We chatted with Mura about the things we liked the best and then thanked her for the opportunity!  As thank you for coming out she handed us each a swag bag with a lb of coffee, a cute DD mug and a $20 gift card inside!

I didn’t think much about the swag bag till later that night when a friend sent me a link to an article about a young girl name Alyssa O’neill!  My heart ached for her family and as I read on I couldn’t hold back my emotions when I learned Alyssa had suffered a sudden seizure which had ultimately taken her life. SUDEP (sudden unexplained death in epilepsy) is a fear of mine and a fear for most parents of children with epilepsy, but  for this family it had become a reality.

The day before Alyssa passed her parents had received a text from their daughter about wanting to try a Pumpkin Spiced Latte and unfortunately it never came to pass, but in an effort to remember their daughter they bought and paid for 40 Spiced Lattes which were given out to strangers.  They only asked that #AJO (Alyssa’s initials) be written on the cups and that they tell the people who received them about Alyssa’s story.  Moved by this others began to pay it forward and #AJO went viral.

Immediately after reading the article I thought of the gift card I’d received and the next morning I headed out to my local Dunkin’ Donuts.  I pulled the manager aside, shared Alyssa’s story, and asked if I added a little money to the gift card could they mark it with #AJO, retell Alyssa’s story and pay it forward.  The manager agreed, I thanked her and headed home feeling like I had helped Alyssa’s family in some small way tell the world about their daughter!

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I am deeply, deeply  sorry for the O’neill’s loss as no parent should ever have to bury their child, but I’m also thankful for their simple act of kindness!  People, including myself, were moved by Alyssa’s story and began sharing pictures on twitter and Facebook.  Now a simple act of kindness to remember their daughter has become a movement!   #AJO pay it forward has gone global and attracted the attention of news networks, talk shows and celebrities.  Your daughter can never be replaced, but her memory will help so many others including my own daughter, by bringing attention to Epilepsy and SUDEP!

~While I was invited to sample these products, the review and opinions on them are my own.~

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.

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Epilepsy The Thief

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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!