It’s obvious that I’m not on social media. Not trying to make a statement. It’s just not for me. I thoroughly enjoy interacting with people in person. Megan knows this because when she is trying to get us home from someone’s house she and the girls will be waiting in the car for me and I’ll get a text saying “I’m leaving without you.” My best friend James knows this because at work I’ll come down to his office to chat whenever I’m not teaching kids. But Megan is good about keeping me informed of things that I might miss because I’m not “connected” to the social media world.
One of those has been the life of Cameron Boyce.
I’m not good at holding things back. For those who know me well, it is just for better or worse the way God made me. It’s impossible for me to hold back tears. I would rather talk about the elephant in the room than shove it under the carpet.
For some, that means I share too much. For others it means they find comfort that they aren’t the only one having a difficult time.
I’ve been super candid about my challenges. Ben, Meara, grief, depression, self worth issues. And although I’ve found peace these past few years I won’t stop sharing the difficult things that need sorting.
One of those is Cameron Boyce. Meara only has seizures at night. Just like Cameron did. Meara is a happy kid. Just like Cameron was. Meara has taught me countless lessons in life. Just like Cameron did for others.
SUDEP wasn’t talked about by our doctors, especially at the beginning. To be honest, it’s still not a real discussion point in Meara’s appointments with the specialists. And yes, she is at risk of the same event that Cameron Boyce had.
It’s why she sleeps in our bed every night. It’s why I’m in charge of grabbing my phone and starting the timer while Megan starts talking to Meara encouraging her to fight her way out. This happens every night. SUDEP is a battle for Meara, for us, every night.
During the day we go on about our business, me to work, to teach. Megan as she holds down our fort and takes care of our daughters’ every need before she heads off to teach at night. And we appear normal. But all is not normal. When the sun goes down and it’s time for bed, the battle begins.
Meara asked us recently the question that we were hoping she’d never ask. “Will I die from a seizure?”
We can’t control her seizures, we can only react. But what I can do is encourage the people that I interact with to love those around them. Tell the people in your life that you love them. Even if it seems weird to do so. Don’t wait to make that memory that has been sitting on your bucket list.
I’m nothing. Honestly, I’m not something special. I’m just as anonymous and small as anyone else. But I can help others understand that they belong. That they matter.
Meara’s gift to me is the understanding that how I treat people, how I go about my day, and love others is what gives me purpose. Belonging.
“One of the deepest longings of the human soul is to be seen.” - John O’ Donohue
So maybe we all have our stuff, our challenges, our struggles. What’s keeping you from sharing them? I have found more belonging by being truthful and transparent about our journey with Meara’s epilepsy. Maybe we’ve lost some fellow travelers along the way, but we’ve also picked up a army of loyalists who aren’t afraid to live authentically with us.
I challenge you to do the same.
Epilepsy sucks. No other way to say it. But my daughter is perfect because God made her and we are showered with her love and light as she makes this journey with us.
My wish, my prayer for you, is that you have belonging. Love you all.
