Monday, August 1, 2016

There is a lot to reconcile in life. Whether it is your journey, your mate's journey, or your neighbor's. Everyone has "stuff" to reconcile. And the "stuff" can multiply and dissolve at any moment.

I grew tired of questioning. One reason I left Facebook and writing in general. One reason the blog became a source of increased anxiety versus the relief that I was used to feeling. Not sure if I'll ever go back and read through the experiences of our family that I've written about.

Emotionally, it's just searching for the balance that I require to be a decent husband, father, brother, friend, etc. without giving up on exploring the difficulties that are inherent to losing a sibling, seeing Meara continue to have seizures, teaching in a profession that increasingly tries to suck out the joy and authenticity that is vital to connecting with students.

Physically, I'm just like the rest of you. Constantly tired from chasing around my own kids and attempting to meet their needs.

Mentally, damn. I hope I retain my sanity. Scared shitless of sharing the same fate as my grandparents. I miss them so much. I saw how difficult it was on my parents to see my grandparents journey through dementia in the last phase of their lives.

Depression sucks. But it's also amazing. Amazing because when I have those moments of just sitting in a $5 Walmart camping chair watching the girls play with each other in the rocks and chase each other with sticks it makes me incredibly happy to be alive. Thankful for camping and going "off the grid." Thankful for the noise of a overly saturated life to quiet at least for a few days so I am reminded that joy is simple. At least for me. The simpler the day, the process, the experience the more I can breath and take in all of the many reasons why it's important that I've stuck with it until this moment. Screw politics, division, news, bureaucracy, war, trying to be "great" and all that bullshit. It's all sources of disruption and solves absolutely nothing. There will always, always be someone or many left behind. And if it's not your physical self, it will be your soul.

We weaned Meara off of Charlottes Web because we weren't sure if it was working. She was completely off for three weeks and her seizures increased, having more while awake and involved in activity. So, we are putting her back on it. 

And for the record, today is the 4 year anniversary of Meara's first brain surgery (the grids).

And lastly, This poem by John O'Donohue is for me and you Ben.

When you lose someone you love,
Your life becomes strange,
The ground beneath you becomes fragile,
Your thoughts make your eyes unsure;
And some dead echo drags your voice down
Where words have no confidence
Your heart has grown heavy with loss;
And though this loss has wounded others too,
No one knows what has been taken from you
When the silence of absence deepens.

Flickers of guilt kindle regret
For all that was left unsaid or undone.

There are days when you wake up happy;
Again inside the fullness of life,
Until the moment breaks
And you are thrown back
Onto the black tide of loss.
Days when you have your heart back,
You are able to function well
Until in the middle of work or encounter,
Suddenly with no warning,
You are ambushed by grief.

It becomes hard to trust yourself.
All you can depend on now is that
Sorrow will remain faithful to itself.
More than you, it knows its way
And will find the right time
To pull and pull the rope of grief
Until that coiled hill of tears
Has reduced to its last drop.

Gradually, you will learn acquaintance
With the invisible form of your departed;
And when the work of grief is done,
The wound of loss will heal
And you will have learned
To wean your eyes
From that gap in the air
And be able to enter the hearth
In your soul where your loved one
Has awaited your return
All the time.
by John O'Donohue

Friday, April 15, 2016

Finding Joy…in Matilda (the pet whale)

This rambling of thoughts is less about Meara specifically and more about my frustration with living amongst the world that she is growing up in.  Though it's not about my reality…more about the reality that surrounds me.  Does that make sense?  Yeah, doesn't make sense to me either.  I think that is why I find it somewhat of a struggle… my brain hurts trying to figure out why we continue to live so completely unaware of what is really important in this world.

Like…healthcare for all.  Real health care.  Not just expensive access.  I mean health care as a basic right, as education is…or should be.  And I don't mean in a political or "let's make it make financial sense" type of way.  I mean just as the right thing to do.  To provide for everyone. 

I see it in my students every day.  I see them asking what they can get, what's in it for me?  Instead, they should be asking, what can I do for others?  How can I do some good in this world for others?

What is our obsession with success?  Or personal achievement?  It's such a fleeting dismal potion that lasts a microsecond before the emptiness returns.  Seriously.  I see it in my students.  They accomplish something and maybe they see it, maybe they care, maybe they don't.  But it doesn't matter really because they've already moved on to what the next best thing is in an attempt to quench their insatiable thirst for fulfillment.  

Meanwhile, my own disjointed and perhaps lonely opinion is that it's not about achievement or personal fulfillment.  It's about joy.  It's about creating a world around you that is bigger than yourself.  Meaning, we aren't more important than one another.  We are just part of something that is so much bigger than what our brains can possibly comprehend.  And maybe it's our purpose to spend time with one another in meaning, in authenticity.  Maybe, just maybe our egos are something that get in the way of loving one another.  

There are many regrets that I have in life.  People I've treated unfairly, people that I've judged, and mistakes I've made.  Not a day goes by that I don't realize my own imperfection and mortality.  The one thing I know is that the good that I can do has nothing do with proficiency, intelligence, personal or professional aptitude or achievement.  

I bet my grandfather never really thought about personal or professional achievement.  I could be entirely wrong.  I often am.  But I bet he thought a lot about his "pet whale" Matilda.  Sure, we would tease him about his pet whale, half believing this incredible fish story.  But, all of us grand kids knew it was true.  Every time Captain Lenie would head towards Antarctica there would be Matilda, swimming right alongside the H.E.R.O.  My point is...my grandfather found incredible joy in the sea and on this boat…his boat.  In the vast nothingness (and yet everythingness) of a otherwise remote and beautiful landscape he felt himself called.  Why else would he keep going back except that he found joy?  He was a rebel, but he always did the right thing for the right reasons.  There wasn't much of a blueprint.  He followed his wits, his heart, his obstinacy.

And yet, although my grandfather wasn't much of one to say "I love you" I do feel a great deal of him in me.  He captained his ship his way.  And it was the right way.  

Why can't that be enough?  Why can't we all just find our own way?

When my life is over everything around me will be what it is.  I am just a small, very small part of this whole thing.  Just one heartbeat.  It's as simple as that.

Bring on the joy.  Bring on the opportunity to step forward.  Bring on the opportunity to hear one simple melody that makes things a little better…even if it's only for a short while.

Thursday, March 10, 2016

Light...

Everything that broke my heart has made me rethink why and how I should spend my time living.  Everyone has their share of hurt and everyone has moments when they lose their mind.

Then, light.  And imperfection. And joy, and love.  And laughter.

Every day is a complete restart.  It's me reminding myself that I don't need anything that I don't have already.  It's reminding myself that the only destination that I have is right here.

I spend time worrying about how long I have Meara.  I also thank God that he gave her to me.  I am thankful that I can hold her hand.

My mind is my worst enemy, my heart my best friend.  I've spoken everything I'd like to say, I have expressed everything that I believe in.  But living in this world provides extreme conflict.  It's okay, that others have their focus and importance placed on things that are of no concern to me anymore.  That is the separation of our journeys.  Everyone has their own sense of belonging and the pursuit of it.

Meara had her parent teacher conference yesterday.  She is growing immensely.  Major themes are that she is kind and a hard worker.  Teachers love to work with her.

I can't help but look at the standards for learning, society's expectation for what is important, and feel the disconnect and agitation of walking through it though.  I pray that I stay strong and remember to live in the moment and not compare this life to anyone else's.  

Ben is here with me throughout the ages.  He's always tapping me on the shoulder and saying "Bubby, stop being stupid.  Pay attention to what really matters and stop worrying about what other people think of you.  Live.  No regrets.  Don't look back.  Just move forward and live for today.  Screw up and make a memory.  There is no time machine that can take us back.  Don't forget to live your life because you are spending time worrying.  You don't need anything that you don't already have.  The next destination is right this moment.  Don't be stupid.  I love you."

You know, for a brother that is eight years younger, he really knows how to teach.  And he's still teaching me.  I give this moment my fullest attention.

I owe Meara this life.  I promised her love, protection, guidance, patience and infinite embrace the moment I held her for the first time.  Everything else is just…not important.

This life is a pilgrimage.

Friday, November 27, 2015

A Pilgrimage

Megan shared a blog post with me from Thanksgiving 2013.  It was frightening.  An opening that felt incredibly intense.  A sense of fracture and imagery that just pierced the already fragile day to day existence that I've come to inhabit lately. 

Meara is doing well.  She's active in school and with her friends.  She's the light she's always been.  She is still having seizures.  The Charlotte's Web isn't providing control.  Maybe it is keeping her from having more seizures than she would without it.  We don't know.  We have to make a decision soon whether or not we'll keep her on it.  We are almost at max dose.  After this, it is just waiting for something else.

I've been searching a lot this past year.  I can tell you that I've never been so tired and exhausted.  I feel incredibly old.  Physically, emotionally, spiritually depleted.  I'm hanging by a thread most of the time.  Wondering if I've hit the other side of the journey where I'm just on a slow crawl towards the end or…maybe there is a new birth in my future.  

Every day, I am just trying to focus on the love I have for my family, and for everyone to be honest.  There is a sad darkness to life that can just drag you down.  Every time I see Meara have a seizure I can feel the stress hormones in my body take over.  Although I reassure her and remain calm and talk her back to sleep I can feel the intense toll it takes on my physical body.  When I explain to others at a birthday party or gathering of some sort the whole experience of her life it just hits me in the chest all over again.  You'd think I'd be stronger by now.

I talk to a therapist about this.  I ride my bike like a freaking animal.  Driving the hurt of life right through my legs and sometimes so hard I wonder if the crankshaft on my bike will just crack right off in the middle of my commute.  Megan is kind to let me sleep through the night.  I love on my children and drink three cups of coffee a day.  I try to be present for my students every day, a lot of times shoving aside the insane ridiculous amount of music "standards" and opting instead to have honest conversations with them about life because at that moment in the lesson that is the message they are sending me… that they want to know why music is important in the grand scheme of things…and also how it can save them.

I do all of this with the hope that it will somehow erase the pain of Ben's absence from my everyday life.  I somehow hope that it will bring closure to losing Mom McGuire so suddenly and without notice.  I try to use it as a way to assure myself that Meara will be okay even though we can't stop the seizures.

It's a lot.  Life.  Sometimes I ask God to take me now so I can be relieved of the incessant stress.  So I can be freed of the feeling of failure here on earth.  I'm trying so hard to be a light in the midst of all this darkness.  And somehow…I just keep on feeling that feeling of coming up short.

There is a sense of guilt that when I read back on reflections of our journey with Meara that I haven't somehow gotten "stronger" through all of this.  Although I feel as though my priorities have changed (for the better) I feel rather weak.  When I read the posts from the past few years I realize grace.  I realize a pilgrimage through darkness.  I realize that nothing is promised.  And I realize that the only thing we can do that really means anything here on this planet in this temporary human existence is to love.  The flip side is that love hurts.  Loving Ben hurts.  Loving Mom McGuire hurts.  Loving Meara hurts.  

But love is the gravitational force that is the only way up.  Yes, it will drag you down.  Far down.  Bloody knees scraping on the pavement kind of down.  But it also brings you up.  Up to the realization that there are only a few things that really matter while we are here on earth.  

I do believe that this is part of the pilgrimage.  Life is nothing but fracture, fragmentation, wandering like a nomad from event to event.  But one day I'll see Ben again, see Mom McGuire again…hold Meara without seizures.  In the meantime, the whole goal is not to waste time on things that mean nothing.  To leave things alone that are absent of heart and to instead follow the light.  

Living an honest life is infinitely harder than pretending.  It is also redeeming because I hope that when I look back on my life that I won't have regrets.

I hope that I've loved Meara enough.  I hope that I've been the dad that she needs me to be.  I hope that all the times I've let her down, let Megan down, that I can be forgiven.  I hope that my life will mean something.  That I haven't just taken up space here.

In the words of Gregory Alan Isakov "…and God's been living in that ocean, sending us all the big waves and I wish I was a sailor so I could know just how to trust, maybe I could bring some grace back home to the dryland for all of us."

Tuesday, September 22, 2015

Grace

Ask Megan.  It's been quite some time since I've written.  Part of it is that I need solitude.  I need to pursue the truth that there is something bigger than me.  This journey, this space, whatever it is that you want to call it, this place that I inhabit…it is all demanding, relentless, and filled with grace.

Meara is evidence that a life worth living is a life where you aren't afraid to get your ass kicked. I'm not really speaking of her, she kicks epilepsy's ass every day.  What I mean is that she teaches me that I should be vulnerable and authentic everyday.  With that comes failure, falling down, imperfection, and wait for it…grace.

I miss writing.  I need to pursue this idea that I am not in control.  I need to explore in depth the notion that "the more I learn, the less I know."  I spoke with a friend today and I said that I'll never be the same person I was before.  She said that of course you won't be.  You are becoming the person that you are meant to be now.  It is difficult to say goodbye to the old me. 

I'm not interested in rules.  I'm not interested in expectations, achievement, accolades, success, blah, blah, blah. I only care about connectedness.  I care about love.  I care about compassion.  I care about grace and redemption.  I care about being around people who are willing to have their ass kicked and talk about it.  I am interested in knowing the real struggle.  An authentic life filled with bravery, courage, and feelings.  I want to think less and feel more.  

I'm not really interested in feedback.  I am interested in truth.  I am interested in the pursuit of truth, compassion, and grace. I won't fake it anymore.  I can't.

Meara's Brave Journey.  When I titled this blog about her journey with epilepsy I wasn't thinking about my own bravery, Megan's own bravery, maybe your own bravery.  But really, that's what this is all about.  All of our bravery.  Our willingness to commit to vulnerability and acknowledge the adversity, the loss, the risk of sharing our emotions and inner depths.

Sanctuary.  Connecting.  Believing.  Resilience.  It's all right here.  Are you interested?

Saturday, July 26, 2014

Shunt Revision Surgery


This week the CSF built up in Meara's head and wasn't draining like it should.  Finally, after she threw up Thursday we called Childrens and took her in on Friday for a MRI and consult.  The MRI showed that her ventricle was enlarged, meaning that the shunt has stopped working.  Her neurosurgeon is back in town on Monday, so we have a shunt revision surgery scheduled for 8:00am Monday morning with an overnight hospital stay to monitor the head wound and to get the required three doses of IV antibiotics.  Hopefully they will only have to open her up near the actual valve but they will test the entire shunt that runs through her body to figure out where the malfunction is.  The surgeon will be able to identify the problem area once he is in.

Meara has had this revision before, two weeks after the original shunt surgery.  She knows what is happening and the only thing she dislikes about it is the IV.  Otherwise she is in great spirits and doing just fine.  If the fluid continues to build over the weekend and she throws up again then we head down to the hospital right away and the on call surgeon will perform the surgery.

I want to extend a special request for a family that we are blessed to know by being on this journey. Ashlyn is nineteen and will be having grids placed on Monday by the same surgeon that Meara has.  She and her parents will be gathering information from the grids and making a decision about possible resection in order to gain control of Ashlyn's seizures.  Please pray and send love to this wonderful family.  The surgeon will be operating on Meara first, and then operating on Ashlyn next.  This family is incredibly brave and we surround them with love and strength.

Hug your kids today, hug your spouse, hug a neighbor.  You never know what kind of stuff life will throw at you at any given moment.  So live in the moment and be grateful for what you receive.  We love all of you and wish you peace.

Love,
Aaron & Megan

Wednesday, July 16, 2014

Update following EEG and Neurology Visit


Meara had a EEG stay at the end of June.  Were were there for three days and during the stay she had one seizure.  The rest of the movement in her sleep they identified as arousals.  So, that is good news.  She might not be having as many as we think based on this snapshot.  

So, the current seizures are coming from her motor strip, or right behind it.  This means that a "third player" showed up.  The first surgery took care of the first player, the second surgery took care of the second player by isolating the activity in the frontal lobe.  The latest EEG did show some spikes/seizure activity in the frontal lobe that they disconnected in the second surgery.  Basically with the second surgery it has prevented the second team from affecting the rest of the brain.  Think of it as putting the "bad guys" on an island by themselves.  

In terms of a surgery perspective the next course of action would be to do a hemispherectomy and she would lose all motor function on her left side regaining some of it with intense physical therapy.  We've already decided a firm no to that route.  What it means though is that her current seizures could be affecting her motor control anyway.  Now, Megan and I haven't seen any noticeable loss yet.  Given the fact that she's had seizures since was two weeks old perhaps it is not out of the realm of possibility that her brain has moved her motor function somewhere else in order to avoid interruption or damage from the seizures.  Well, at least that is my own positive lean.  The other positive lean is that at least they are not affecting the cognitive part of her brain.  The meds affect her cognitive development but at least the seizures aren't. 

We had an appointment with Meara's neurologist this afternoon at Childrens and we informed her that we are pursuing the Charlotte's Web strain of CBD.  To our awesome surprise the neurologist shared with us that the hospital is in the process of securing a clinical study of a synthetic version of CBD.  She'll present to her boss next week.  They will have to choose between two different competing manufacturers of the drug and then hopefully begin trial within a few months.  We told her that we would like to be considered for the trial if Meara qualified.  This could be huge if it works.  If it does work it means that since it is a synthetic version and FDA study approved that we could travel with the drug and it would be included in our insurance formulary later down the road.  In other words, it would be legal across state lines and also managed by the doctors that we've been seeing for the last six years.  We are still on the waiting list with Realm of Caring but since we are at the mercy of how many crops they can grow/harvest it might take a very long time until they can take Meara on as a patient.  And it is important for Megan and I to keep in mind…that it might not provide control for the seizures.  But at least it is another route to pursue with a heck of a lot less risk and definitive deficit loss than another surgery.

Meanwhile, Meara is doing well.  She is highly active and looking forward to first grade next year.  She loves her sisters and continues to beat the odds.  Resilience baby.  Resilience.  

Love to all,
Aaron & Megan