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.