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.”  

Shallow

I was watching clips of the remake of A Star is Born. I haven't seen it in the theater.  There are many lines from the movie that resonate but it is the song Shallow I want to address. 

I also wonder if there is something else that we are all searching for in this modern world.  

"In the bad times I fear myself..." How many of us feel this way?  More than some of us might want to admit.  I am aware of the plot line.  The addiction.  Suicide.

This month is epilepsy awareness month. Every day is epilepsy awareness in our family.  Even MacKenna could explain to the average person what a seizure is and what it looks like.  She's four years old.

I realize that there is a myriad of reasons why we are affected by constant stress and worry in our family.  But we aren't the only ones.  And you don't have to have a child with uncontrolled epilepsy to be affected deeply by the woes of the world.

Some of us act in certain ways trying to cope.  Some write, create, read, exercise, dedicate themselves to self care and healthy lifestyle.  Others take to the bottle and pills.  I bet many just fill that void with stuff.  Material possessions, accumulation of wealth and status. 

Nothing will mask the truth though, and that is why we are not meant to do this alone.  God did not put us here on this earth to walk in solitude.  Solitude has it's purpose.  But it isn't meant to amplify the demons inside.  It is meant for silence and reflection.

We truly need each other. And I don't necessarily mean in a tribal way. We need the ability to see ourselves for what we are.  And just being honest, when I look into the mirror I don't always see the truth.  I tend to see something far more broken that I actually am.  Don't get me wrong, I am broken.  I am imperfect and less than.  But what I see is not necessarily accurate. This is why we need each other.  To remind each other that we all have value and worth.  That we matter to someone. 

For anyone out there who is struggling, finding that solitude isn't what you need right now, please know that you are not the only one who feels this way.  I am on the same journey.  

"Tell me girl, are you happy in this modern world..."

One day, my hope is that I won't fear myself in the bad times.

Peace, Love, Rest,
Aaron

Abiding

Need to speak. My heart is broken and my soul searching.

For lots of reasons I struggle each day. The list is long. Starts with lack of sleep, then the constant kick in the face from watching Meara battle epilepsy every night. Then the usual things parents worry about. General well being of the girls...school, friendships, normal stuff.

Every Thursday night we go to Noodles for dinner. Just me and the girls after dance. Megan works late Thursday nights. I’ve noticed most nights the server who brings our food is the same gal. Young. High school. She has 15-20 scars up and down both arms. Cutting. I want to tell her she is loved. It is in that moment that I know that I shouldn’t reach out. And I don’t. Not my place. But I do pray that she feels God’s love and that she realizes that she is worthy.

People are hurting. All around us. I look at the bigger picture, the massive collection of all of us and I see such anger and anxiety. I see sadness, hiding behind hopeless nights.

But there is so much more. There is love and grace. There is forgiveness and rest. Darkness is easy in this world. You could be surrounded by light and still find yourself in the depths. The whisper of despair can grab you by the throat and drag you for miles. It could be a relationship, the news, a personal tragedy, loss, or maybe a chemical of short supply.

All I know is that I see it, I feel it. Deeply. And for what it’s worth I can’t ignore it. Be it as it may, regardless of intervention or anything of the sort, I believe that we weren’t meant to do this alone. Which is why the world hurts so much. I don’t have the right thing to say. Or any answers. But if I look around I honestly believe that there is an army waiting to rescue us. The thing is, the army isn’t us. It’s something bigger than us. I’d like to believe that the army is forgiveness, grace, love. Realizing that no matter our personal beliefs, political aspirations, or personality that what unites us is all that matters.

So to the gal who kindly delivers our warm meal with your smile I say you are loved. You are worthy. You matter. More than you know. A lot more. To my wife and daughters, to all the people out there, I say hold on. You are loved. You matter. More than you will ever know.

Meara - Hospital Stay

Meara - Hospital Stay

Friends, update on Meara and where we stand on her treatment…

Next week, starting on Monday, Meara will be admitted to Children’s for a EEG study.  She will be in the hospital for three to five days.  The purpose of this EEG is to gather information to see if Meara is a candidate for RNS (neuropacemaker).  The goal and hope is that she has plenty of seizures, possibly even a status, in order to give the most accurate information to the doctors on where her seizures are currently originating from.

I know is sounds weird to wish for Meara to have seizures but in our case it makes sense for this stay.  Meara is actually looking forward to it, she gets to sit in bed and eat hospital mac and cheese.

Megan and I on the other hand, well, we’ve been through quite a lot over the years, many of you have witnessed.  I wish I could say that we’ve got this totally handled but the reality is that we have been under a great deal of sleep deprivation and stress the last year and a half.  Ever since Meara has started having status seizures the game went to a whole new level of intensity.  We’ve all been through sleep deprivation with having kids, teething, taking care of them when they are sick.  But this is every night for us and unless we get some sort of control it isn’t going to change.

Megan and I discussed the other day that there has been maybe a few times we’ve left the girls overnight so the two of us could get away together. Lots of people don’t have the luxury of getting time away as a couple and we are part of the that tribe. Quite frankly, with Meara’s seizures we just can’t leave her under these circumstances.  Finding someone who will wake up throughout the night and administer a med seems impossible right now. We are hoping that at some point that we’ll have a mechanism of control for her epilepsy so that we can fulfill that item on our bucket list.

My friend reminded me a few weeks ago that I should write more.  She said that I have a great deal to say.  Problem is, I think that what I have to say is so limited.  Not just in scope but I think also in resonation.  But here goes anyway...

The soul is a delicate thing.  It holds so much of who we are and what we experience.  The darkest moments and the bliss.  The intellect says one thing and the soul sometimes agrees.  Other times emotion takes hold and reminds us of how hard it is to survive in difficult places.  I am unsure I will ever reconcile this life.  Where some of us have so much and others can barely eat one meal a day. I don’t know that I will ever fully understand why there is so much dichotomy in our world when it comes to human existence.  

The reality is I won’t ever understand.  It will always consume my thoughts and emotions as I think of why there is so much suffering in the world.  I don’t have any answers at all.  Except to maybe make every next decision about how can we take care of people.  Maybe it is sustenance, maybe it is companionship, maybe it is helping someone feel not quite as lonely in the world.

Until next time, wish for seizures next week and we’ll keep in touch.

Love to all,

Aaron & Megan

RNS

Update on Meara:

Megan received a email from Meara's neurologist that even though Children's hasn't gotten FDA approval they have implanted two children with RNS (nueropacemaker).

So we meet with Dr. Koh on Monday to discuss Meara's case and (hopefully) see if she can be a candidate for the RNS surgery.

Wish us luck!  When we told Meara she cried happy tears.  We reminded her that there is no guarantee that RNS would work but that if she was willing to give it a try that it could provide the seizure control we are hoping for.

More as we go along.

Love,
Megan and Aaron