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


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?