Elephant

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.

Cranioplasty

Next Wednesday Meara will have a cranioplasty to repair her skull. She has missing pockets in her skull due to the hydrocephalus that was incurred from her last brain surgery.

Because her skull is vulnerable we don’t have a choice in this surgery. The longer we wait to do this the higher risk of damaging her skull from a simple accident, fall, etc.

When the surgeon is finished placing the implant called medpor, the plastic surgeon will then remove as much of the existing scar tissue as possible and pull her scalp closer together. She will still have a scar but hopefully it will be smaller and less noticeable. For Megan and I it is her battle scar. A story of where she has been and what she continues to fight every single night. For Meara, an almost eleven year old, this gives her a chance going into middle school to feel like a normal child. Which she isn’t. She is not normal. She is a warrior.

Going through the process of the VNS surgery in April was a good reminder for Megan and I. How to handle the waiting room. How to handle the recovery. How to help Meara manage the pain.

When you think of a surgeon opening up your child’s skull it’s surreal. Something that no parent wants to go through.

But this isn’t about me or Megan. It’s about Meara. It’s about making her stronger. As if she hasn’t proved her strength, resilience, and determination over and over again.

This is about healing. Meara continues to have seizures every night. Megan and I do not get proper sleep. But we continue. We continue because our daughter is stronger than epilepsy. She is a warrior. And because if she can get up and take on the day then we can too.

The ocean knows how to heal. If we continue to let the ocean heal it will. I believe that for ourselves. Some things last. Like love. If Megan and I love each other. If we love our children. If we love others. We will heal. And so will Meara. That is, hear me, that is...the only thing that will heal. Love. If we let it. If we let love takes its place, and let it do its work. We will all heal.

Gifted?

Disclaimer: maybe a vulgar word or two will be embedded in my thoughts and emotions within this post.  Read at your own risk.  I take no responsibility for how you receive my amateur attempt at explaining whatever journey this is that we are on.  My slanted opinion is not sterile nor washed for political correctness.  Oh, my grammar. Yes, the grammar will suck.  I apologize in advance.  Make no mistake, you will get the point regardless. You might not agree but you’ll understand my angular conclusion.

Okay, you are still here.  Good luck to the both of us.

I want to discuss education.  Yes, the rabbit hole of philosophical musings and controversy. If I hear one more parent ask why their gifted child is not being identified I am going to rip the imaginary tape off of my mouth and color the precious oxygen around me with the reasons why every single child is gifted. Therefore…no need for a gifted label.

Since when did math and science become the exclusive measure of success and purpose for leading a meaningful life?  I call bullsh*t.  Oops, I warned you.

Problem solve this. Culture gives the highest praise to particular areas of learning. Why? My grandfather joined the merchant marine at age fourteen.  He had no high school diploma much less college.  Through experience and determination he ended up claiming the title of a master navigator, and captained the R.V. HERO.  A research vessel with a reinforced ice breaker hull that explored Antartica for the U.S. government.  Work ethic, grit, passion, and most of all a commitment to following his instinct, his calling, his passion.  And then doing whatever he had to do to get on with living this life he loved with purpose.

Meara is a daughter, a student, a dancer, an artist. She completes her assignments in all the academic content areas and listens to her teacher. I know this because her teacher told us. I say she is gifted. You know why? Because she is missing parts of her brain. And she still has seizures every night. But you will never find the word “gifted” launch out of my (or Megan’s) oral harbor because guess what? Every stinking kid out there is a gift. Every single one of these innocent minded small beings has a gift. And every single kid is “gifted” in something. Even if it’s in empathy, compassion, in being a good human being.

I’m not raising my children to do what the institution says they should do. I’m raising my children to ask the question “What can I do to make a difference in the world?” Instead of “What will I be when I grow up?” That question is empty anyhow. You know what you’ll be when you grow up? You will be you. Perhaps a wiser and more experienced you.

I am part of this institution by the way. I am a parent, a teacher, a participant and observer of society. So pin the tail on me. I am technically within the scope of blame for this institution that is incessantly obsessed with the use of the word, label, whatever we want to call it. In fact, if I were a lawyer I’d sue myself.  For holding my tongue and not speaking my mind earlier.

For a brief moment entertain existence without joy…or love.

Shakespeare…imagine being his teacher.  Would you want Shakespeare to choose a profession that some institution deemed “practical” or lucrative?  Or would you rather he follow his own creativity and vocational call and wait for it…become Shakespeare? Freaking Shakespeare. I do not want to imagine literature if he had followed some imaginary advice of a imaginary institution. If he had thrown his creative talent by the side to make room for a empty yet institutionally approved life.

Ponder these words if you ever feel curious of why we have more youth experiencing anxiety, depression, even suicide:  “If I lose myself...I am nothing.”

Somehow I don’t read this as “If I lose my job…I am nothing.”  I read it as “If I fail to be authentically me…I am lost.”

Neighbor, friend, family member…I dare you to use the word “gifted” when we discuss your child.  Don’t be surprised if I give you a few reasons of my own as I opine why every child is gifted in their own right. Maybe just maybe I will convince you to lose the label and see your child as something, someone more than just the content that they learn.

Next time you say "My kid is gifted.” I will reply “Hey, my kid is Meara.”