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.