Hospital Christmas

 Dear Friends,

Well, you probably expected that this would involve a medical update and you are correct.  I also wanted to present a simple request.  

First, Meara has an infection called staphylococcus capitis. Doctors are pretty sure that it entered her system during her cranioplasty a year and a half ago.  Apparently it is a slow growing bacteria which is the reason it took until now for her to experience pain/symptoms of the infection.  It is a common infection involving prosthetics (shunt). It is also the least resistant to antibiotics so that is a win.  Meara has been in the hospital since Sunday afternoon (12/13).  She had her shunt removed Monday night and a subdural drain installed in the meantime.  Tomorrow morning (Tuesday) we have another ultrasound to check on the fluid pockets in the abdomen.  If they are gone (from treatment with antibiotics) then we can schedule the next surgery to reinstall her shunt.  Today marks day eight in the hospital.  If I were a betting man, after talking with Infectious Diseases and Neurosurgery today, I’d say we have a 50/50 chance of being home by Christmas.  If we do she’ll come home with the PICC line to finish out her IV antibiotics.

I want to express my deepest gratitude to all the families and friends who have supported us during this unexpected hospital stay.  We are used to seasonal flu restrictions at the hospital but covid ramps it up a bit.  We couldn’t have maintained our sanity without the help with childcare, the meals, hospital decorations, and the phone calls, texts, and well wishes.

Here is my ask.  I hope with deepest sincerity that this is not a controversial ask but a very simple act of grace.  I think we can all agree that our society has been through the ringer over and over again during 2020, and before.  It is very easy to get into a space where we compete to see who has struggled the most, experienced the most pain, or deserves the most help.

Let me speak purely from my heart.  Everyone needs help.  Everyone needs grace.  Everyone needs love and support.  You never know what is behind someone’s curtain or what struggle they are facing.  It’s all over the map.  It might be mental health, finances, marriage, medical, etc. And no one is immune to needing a smile, a hug, a meal, a loving word.

It’s easy to resort to anger.  And to be clear anger can be useful at times.  But I’ve spent enough time being angry about things in my life to know that I have found more peace by forgiving, by loving, by taking the time to get know people rather than resort to quick judgment and assumption.

We all have our individual life experiences that are valid and true.  And it does shape our perspective and our thinking.  All I ask is that before you think of the world in a “us versus them” lens maybe instead think “how do I develop a positive and meaningful relationship with this individual?”  Because you don’t truly know what their story is until you get to know them.

This hospital floor is filled with all types of families and stories.  But epilepsy doesn’t discriminate.  And all of us on this floor have one common goal: keep our children alive and thriving.  It’s that simple, and yet that complicated too.

So, this holiday season, this covid season, this dumpster fire of a year, maybe smile first, say a kind word first, before getting into what divides us.  You never know, you might realize you have more in common with each other than you think.  

We love you.  We support you.  And acknowledging that we are in the midst of possibly the biggest rise in mental health crises in a generation (don’t quote me on that) go easy on people.  Personally, I respond better to a smile than a harsh word.

Happy Holidays Friends,

Aaron

Life goes up, life goes down... - Emerson Hart

I just realized that the last time I wrote was in August.  That might be the longest I've gone...

The 40's are just damning...just darkest of them all perhaps.  Just when you think you have some things figured out, there it comes, the cracks reveal themselves at every turn.  And yet, I am the lucky one.

Five weeks in for all of us, trying to do our part and keep the greater good ahead of the individual needs and habits.  It's hard.  And yet, in all of this chaos and uncertainty, there is a simplicity and spiritual implosion that seemed overdue.

You know what I'm talking about.  If you really get serious and refuse to blow smoke in anyone's face you'll admit that pre-COVID 19 we were all just asleep at the wheel driving harder and harder to meet some made up measurement of success, or happiness, or life meaning.  Whatever you want to call it, doesn't matter...it can remain nameless but you know exactly what I am talking about.

Consider this, an asteroid or volcano can take out the earth at any moment.  It has before and it is only a matter of time until it happens again.  We have had pandemics before, this is nothing new.  Just new to our generations.  We behave in our lives as if the amount we have in the 401K matters, or the size of house, or the salary we make.  How many degrees we have or how many lines we have in our email signature.  We have this idea that at some point we have made it, or that we will rest because the work is finally done.

But what if the asteroid hit tomorrow?  Would you worry about any of that?  Would all the money in the world matter anymore?  Of course not.  So what if you lived as if that were going to happen at any moment?

Best thing about COVID-19?  You don't need an overly complicated, scheduled life to find meaning or connection.  All  you have to do is turn inward or towards the very dear ones that you live with.

I've spent more time with my family over the past five weeks than I have in a very very long time.  

Meara has had a tough year.  Middle school sucks.  It does, no way around it.  You get it.  It's no good for anyone.  At least for honest people.  But hers has been especially tough.  The specifics on that is for another day, another post.  But related to epilepsy its been really hard.  Her seizures have gotten more intense and more frequent.  A few nights ago her two and half minute seizure caused temporary paralysis on both sides and temporary loss of vision.  The bad ones are easy to figure out because it starts with her saying "No! No! No! Daddy! No! Mommy! No! No!" and then it turns into a wrestling match to get her to stay on her back and not turn over so her mouth is not facing the pillow or mattress. 

I hate to say this but Megan and I almost high five'd each other when it was done. Know why?  Because we avoided the rescue med and a trip to the ER.  Now is obviously the worst of times to be going to the hospital.

We aren't entitled to anything in this world.  COVID-19 has taught us that.  Painful lessons, extremely painful.  For some it is missed graduation ceremonies, for some it is job loss, for others it is the ultimate...the loss of a loved one.

And here we are reminded that we are owed nothing, entitled to nothing but our own appreciation for what we have and experience in this one moment, right here right now.  Scary, right?  But what if that was the key that unlocked the handcuffs we've been operating from for most of our lives. 

I used to live in the moment, for the moment, when I was younger.  Along the way I found myself in the same trap as the rest of you.  Career, accumulation of stuff, of achievement milestones...somehow thinking any of it would give me rest when I reached the top of that made up mountain.

But it didn't.  I feel just as small as I ever have. And I feel just as inadequate and raw, and insecure as my worst day.

And you know what? It ain't bad.  It ain't bad at all.  You know why?  Because it's real.  So real.  Something I have done right over the past eleven years is work my way towards authentic living.  Beauty is the ability to say to yourself that brokenness and struggle is not something to be fixed, rather something to cast the reel and see what you can pull out of that reckless sea.

Yes, I am the lucky one.  I have a daughter who at any point could need a rescue med to stay alive.  I have a younger brother in heaven.  I have a genetic link to depression.  And wouldn't you know it, when my students describe me they always start with "Mr. E is funny..."

If you ever thought that you'd be done learning then it probably means you have a lot more learning to do.  What is the take away...here in my 40's...what is it?  What have I figured out?  Just that what matters most is not what others tell you matters.  It's usually staring you down, right in front of you.  But you are so afraid to shut out the noise, and the judgement of others that you completely miss it.  How long can we chase that tail?  For however long it takes...to get right back to yourself.

I've always said that I don't know much. I do know what music I like. I know that I love my wife and children so much that it actually hurts at times. I know the name of my best friend and I know that I am reasonably good at keeping children's attention and teaching them how to keep a steady beat, have accurate rhythm, and read notes off of a treble clef staff.  I know how to load a camping trailer, hook it up to a tow vehicle and calculate the payload so I don't destroy the axles. 

I know about as much stuff as the next person.  But I still don't know when this is all going to end.  Or where the finish line is, or what the real definition of success is, or if there actually is one.

And the real question that I guess should be asked...does it matter anyway?  Probably not.  At least for me.  The answer for me goes something like this:

You are who you are the minute you were born.  You've always been you.  Just learning along the way.  Emotionally, spiritually, mentally.  Just adding experience and knowledge while tripping over failures and lost opportunities.  But that's about it.  There is no getting control of anything.  It is just a ride...a roller coaster with a  seat belt to keep you from falling out...and you trust with all your might that it will hold you until the moment it is time for the ride to end.

Here is the awesome news ya'll...beauty can always be repaired. 

Beauty can always be repaired.  Get on it.

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.