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Archive for April, 2017

Searching for Patterns

Brooke and I at the beach last summer


I gave up on religion a long time ago.  I still say a prayer every night before I go to sleep, but honestly, it’s more a combination of habit and hedging.  Lately, I am finding less and less reason to believe.  

***

It started a little over a year ago: a call from the nurse, a rush to the school.  Even as the events were described to me, I really could not visualize what had happened. Twelve days later, it happened in my arms – my worst moment of fatherhood and now I cannot not see it every time I close my eyes.

A visit to the doctor, a prescription and then…

…nothing.

Nothing for twelve days, thirty days, three months, six, the turning of the calendar, ten months and then…

…a speed bump…

A seizure?  Maybe.  We’re not sure.  It was something.  No, yes, we’re pretty sure it was a seizure.

A few weeks go by…

And then a late night event, stumbled upon because one of us heard something – something that could have easily been brushed off as nothing, something that thank God we didn’t ignore.

We up the medication.  Another couple of weeks and then…

BAM! BAM! 

An MRI, an EEG…nothing unusual, nothing abnormal, nothing to report. Nothing to tell us what to do.  A new medication…a new hope and then…

BAM! BAM! BAM!

And another one today; I literally ran to be with her…

Daddy is here, Mama is here.

Nearly once a week…for four weeks…no, five weeks, no four…

I hate that I can’t remember if we are at six or seven in the last two and a half months! How can I not remember?

I look for patterns, for triggers, for reasons.

Is it light? Is it sound? Is it the weather? The season? Her hormones? 

Is it her diet? Is it her iPad? Is it the water? The environment? Her…what?
Hey, GOD!!! What is it?  

Answer me! Tell me! Help me!!!…help her.

And then I remember: I stopped believing in You a long time ago.

I’m…scared.

***

And so I keep looking for patterns, for triggers, for reasons.  

Her doctor has recruited more doctors.  She now has a team.

I will be Daddy.  

I will hold her, and hug her and kiss her.  I will sit with her, be with her, love her.

I will look for patterns, for triggers, for reasons…

…and I will run.

***

If you are so inclined, I would be grateful for any donations to my New York City Marathon run to raise funds for the Epilepsy Foundation. You can donate —> here <—. I run because it is something I can do to help scientists and doctors find answers; to help them help Brooke. Your incredible support has already pushed me past $10,000.  I have set a new goal of $15,000, which would be over 30% of the team’s overall goal of $49,000 by November 5th.  You keep pushing me to push harder.

As always, thank you for your ever present support of Jess, me and more importantly to us, of Katie and Brooke.

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Every Moment

Brooke on my shoulders, taken almost a decade ago…


Every twitch, every shake, every sudden movement.

Every prolonged silence, every glazed look, every lost in deep thought.

Every loud noise, every patterned sound, every random anything.

I hold my breath, my heart jumps, my mind races.

Every phone call, every text, every email.

Every “Daddy”, every “Honey”, every “Hey”.

Every cough, every irregular breath, every moment…

I hold my breath, my heart jumps, my mind races.

Every race, every run, every mile.

Every push up, every pull up, every sit up.

I do because every moment…

I hold my breath, my heart jumps, my mind races.

Every moment…

Every, single moment…

Every…single…moment…

I hold my breath, my heart jumps, my mind races.

***

You can donate to my fundraising campaign to help end living in fear of the next seizure —> here <— .  Thank you for your love and support.

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300 Seconds

Timer set to five minutes…300 seconds


As a marathoner I was always counting: mileage, pace, time.

It was constant.  

Toward the end of a marathon, or any race for that matter, I would distract myself from the pain in my legs and lungs by constantly running the numbers of how far I had gone; how many miles were left; what my current time and pace were and what I needed to do over the remaining distance to achieve the time I wanted. With every step the variables would change, so I would run the numbers again and again and again.

It got to the point that I would find myself doing similar things when driving long distances.

Lately, the numbers game in my head has changed.  I haven’t run as much in recent years, and it has been over three years since my last marathon.  Recent changes to our landscape however, have forced me to have a different kind of math running through my head…and this math is ever-present.  Today the number that is constantly going through my head is 300.  Over and over again my brain begins a simple countdown starting at 300.

But I never let myself get to zero.

Wherever I go with Brooke – to the market, to a restaurant, even a short, five minute walk with the dogs – I carry her diastat (her rescue medicine) with me in a small backpack.  It is the the emergency medicine we administer to her if she does not come out of a seizure within five minutes.  That’s 300 seconds.  300 seconds during which the body is not breathing.  I can barely hold my breath for 90 seconds. Multiply that by 3 1/3.

As short as 5 minutes is, 300 seconds is a painfully long time-especially if you are watching a loved one go through a grand mal seizure.

300 seconds is an eternity.

We have a monitor in her room now, but she likes to move about.  Whenever she walk out of view of the monitor, or goes to another room, or if I have to shower, or she goes to the kitchen to get herself a drink, the timer in my head starts.

300, 299, 298, 297, 296, 295, 294, 293…

Even with the monitor, one has to stay vigilant.  If I’m studying, grading, reading, watching a show, I still have to check the monitor.  What good is a monitor if you aren’t using it? 

…292, 291, 290, 289, 288, 287, 286, 285…

To be honest, I never get past 2 minutes without…

“Brooke, you alright?”

“Yup.”

I imagine she gets tired of the constant check ins.  Sometimes I change it up…

“Brooke?”

“Yeah?”

“I love you.”

“I love you too.”

I will tell you this, the girl knows her daddy loves her.  

***

But the counting is constant.

The counting doesn’t stop.

Lord knows that if at some point I call out to her and she doesn’t answer because of a seizure, I have to know potentially how long she has been seizing.

The counting is constant.

The counting doesn’t stop.

I count ourselves fortunate in that we have had to use “the rescue” only once.  

The counting is constant.

The counting doesn’t stop.

***

As I work my way back into running, I know I will pick up my old math habits again-the habits that eventually went away.  

I wonder if I will ever stop counting the 300.

***

If you are so inclined, I would be grateful for your support as I raise fund for the Epilepsy Foundation.  You can visit my fund raising page —> here <—.  As of this writing, you have helped me raise over $9,500.  My current goal of $10,000 will need to be adjusted.  The New York City Marathon team as a whole is trying to raise $49,000.  We are just over $20,000 at this point, in no small part due to your tremendous generosity.  I am grateful for your continued support of our family and of the causes we champion.

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Changing Landscape

Brooke having lunch with Clifford after getting set up for “their” 24 hour EEG.


When Brooke was first diagnosed with autism, Jess and I sat in our car and cried.  We did not know what to expect.  We did not know what lay ahead of us.  Our journey would take us down the typical path of the time: fear, anger and then demands for a cure.  We would eventually come around to the realization that Brooke’s neurology was not broken; it was, scratch that, it is different.

In those early day I found myself looking for a purpose.  I was a stay at home dad whose world had just been turned upside down.  Honestly, autism scared the shit out of me. I felt helpless.  How could I help my girl?  How could I make her better?  Quite accidentally I stumbled into running (a story for another time maybe).  At first it was a stress reliever, but the more I ran, the more “running for a cause” began to creep into my consciousness.  I eventually hooked up with Autism Speaks and ran in three New York City Marathons and one Boston Half-Marathon raising awareness and thousands of dollars in the process.  At one point I was literally on billboards in different parts of the country encouraging people to sign up to “run with Autism Speaks.”

Ultimately, Jess and I parted ways with Autism Speaks (another story for another time perhaps).  Simply put, we had evolved in our view of autistic individuals.  We began to listen to autistic adults.  What they told us was that there were other ways, better ways to help.  We began looking for other charitable organizations.  

It was shortly after this time that Brooke began to show some signs of epilepsy.  We had all the tests done.  Nothing.  They told us just “keep an eye on things”.

Then last year on St. Patrick’s Day everything changed.  I was coming home from the grocery store.  As I pulled into the garage, Jess was on her way out.

“She had a seizure,” is all I remember.  I dropped my groceries and we sped to school.

There would be one more twelve days later before Brooke would be put on meds.  

Despite the other stressful things going on in our lives, this part of it, the Brooke part, would, with the help of medication, return to a distorted sense of normalcy.  That normalcy would be shattered almost ten months later.

Over the last few months we have had to deal with seizures that are occurring at an increased frequency.  Medication are being adjusted as we go, but we are still in a state of uncontrolled seizures.

This new landscape has brought back 11 year old memories.  I think about that scared father a decade past and I realize that I am more scared now that I ever was then.  Yes, there are challenges to being autistic for Brooke, but epilepsy is a whole new thing.  Anyone who has witnessed a grand mal seizure can attest to the ultimate helplessness one feels.

***

The landscape for us has changed.  We have learned to embrace Brooke’s alternate neurology.  We continue to fight for her right to access, but long ago rejected the idea of a “cure”.

The landscape for us has changed.  The impact epilepsy has on any given moment is overwhelming.

The landscape for us has changed; my body has changed too – I am no longer as strong or as fast as I was nearly decade ago.  But my determination to help make the world a better, safer place for my baby girl has not wavered.  I stopped running regularly a few years back – I’m not sure I ever truly bounced back from my 100-miler.  

My legs are older; my lungs are older; my stamina is not what it used to be.  My heart is heavy.  But as the landscape around me changes, I must do the same, and sometimes changing means returning to the past.  

Without really thinking about it, after one of Brooke’s recent seizures, I signed up to raise money for the Epilepsy Foundation.  I will be running the 2017 New York City Marathon.  As of this writing, with your help, I have already raised over $9,200, nearly three times the required minimum and less than $800 short of my goal (with nearly seven month to go – perhaps I should raise my goal again?).

I had originally planned on returning the the marathon distance in two weeks at the Providence Marathon, but in my eagerness to get back into distance running, I injured my leg.  My run in November is too important to risk derailing my training this summer, so I am taking the time to let my leg heal.

I will not be as fast or as strong, but I will be as, if not more determined.  

This is what I wrote on my fundraising page:

No one should have to live in fear of the next seizure – not the one who suffers from epilepsy nor the loved one who can only watch, powerless, helpless. The next seizure is a fear that haunts every parent who has a child who suffers from epilepsy. 

Lives turn upside down; sleep becomes a rare commodity; relaxation a dream. Time is spent on the edge.

As a father these moments, these very worst moments of my parenthood, constantly linger at the edge of my consciousness. I am never not thinking about “the next seizure”.

It is exhausting.

I am tired.

But I know that I have to do something, something so my daughter, my family, my friends, you do not have to live in fear of the next seizure…the worst moments.

I know that we can’t solve epilepsy in one day or even with one fundraiser, but we need science to develop the tools to mitigate if not eliminate these worst moments. This is why I am raising funds to make a difference in the lives of people living with epilepsy.

This is why I am running again.

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives. 

Please support this cause by making a safe and secure donation to my fundraising webpage. Giving to the Epilepsy Foundation means you make the world a better, easier, more manageable place for the 3 million people in the U.S. who are living with epilepsy and seizures like my Brooke. 

Thank you for your help and support.

Luau

This week won’t involve any running.  Jess and Katie are taking a week long trip that has been planned for over a decade.  Brooke and I will be doing whatever Brooke wants to do for the April break.  I’ll continue to rehab my leg and focus on core strength.

If you are so inclined, I would be grateful for any donations to my effort to raise funds for the Epilepsy Foundation.  You can donate —> here <—.

Thank you for your ever present support of Jess, me and more importantly to us, of Katie and Brooke.

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