Epilepsy Awareness Month

November is epilepsy awareness month and I happened to explain to a parent at my school what SUDEP was.  She was asking about Meara and she had heard of SUDEP.  Concerned, she asked if Meara was at risk and I responded yes.  I could tell that she wanted to ask more...

She is at a higher risk for SUDEP because the bulk of her seizures happen at night, while she is sleeping, and also because her seizures are not controlled.

I guess I don't speak about it because I honestly try not think about it.  Every night, I give Meara a kiss before I head to bed.  She's asleep and she doesn't hear me but I give her one last "I love you" for the day and expect to see her in the morning.

So I know the question that the parent wanted to ask me was "how do you live this way?"  I live this way because I have no choice.  Because Meara has no choice.  No one did anything wrong, no one made a bad choice.  This is what God intended for Meara, for Megan and I, for our family.

I will tell you this.  The perspective I have is worth more than I could put a price tag on.  Maybe I was already headed there with Ben, but Meara just pushed me to exactly the place that I expect to live every day.  That is…never take a minute for granted.

I take one day at a time.  One moment at a time.  I don't know if Meara will see me grow old, I don't know how much time we have together.  All I know is that I expect to grow old and play with her children one day.  I expect to walk her down the aisle and reluctantly give her away to someone that will never be good enough for her (at least in my eyes).  Well, maybe he will.  He better be.

I will not waste a minute worrying about things that don't matter.  I will take one day at a time and be grateful for this moment with her.  

There are so many things in life to worry about.  SUDEP should be at the top of the list for Megan and I.  And although its always at the back of our minds I will say that I'm not going to waste a minute expecting it because she and I both need to live in the moment.  Take nothing for granted and thank God for this day together.

Epilepsy is real, its frustrating, its exhausting.  Both for Meara and for us.  But it won't sentence us to a lesser existence.  If anything, it has given us the wisdom to realize just how lucky we are to be her parents and to be walking this journey with her.  How she decided to be born into our family is beyond my understanding but I will tell you that she is the greatest gift I could have ever received.

So, for epilepsy awareness month, or in fact, for all the parents and children living with a chronic medical condition please do one thing for them today. Live. Live as if nothing is promised and be grateful for each breath, each morsel, each sip, each giggle, or tear that you get to experience.

And…give a caregiver a break…they need it.

Time...it keeps stealing moments.

You know you've wrecked your garden when you neglect it. Better yet, in my case... I've planted the seeds too deep.

If it all were to make sense I would have figured this out a long long time ago. Problem is no one comes around enough. Speaking of my fits of clarity of course. 

I now know that whatever is meant to follow in step with this life I've apparently chosen...well, I've managed to find bits of peace of mind.

I have a marriage worth more than anything that you can dream up. Love like ours is something that doesn't happen that often. For someone to love me through these depths...it's something she was born for. Who else could walk my side and love me this much? No one else.

I have three daughters, their hearts beat in rhythm and but their melodies are chimes that bend to the wind...always at the mercy of their own yearning. The wind bellows and it steals the song right out of their hearts...for all of us to hear.

God, grant me the time to take all of this in. Give me strength and tenacity to keep turning the pages.

Driving...driving...into the wind.

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

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.

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.