Conundrum

April 18, 2013 acs, cancer, dadding, fundraising, karate, relay for life, teratoma No comments
Don't let this little ninja beat her old man.

Friends,

I have a conundrum.

My daughter is set to clean my clock in fundraising in this year’s Relay for Life. She has all of the advantages: she’s cute as hell, she’s a cancer survivor, and she has the best damn father on the planet.

I’m sure you’re all saying “But, Ben – *you’re* cute as hell too!”  And you’re right – but somehow, she still wins.  This is unacceptable.

Once she realizes her father is fallible, well, that’s the end of things.  It will only be a matter of weeks until she has stolen my car and my tattoos, and is joyriding straight to the American Girl store with my debit card.

Please, don’t let that happen.

In the past, many of you have been generous enough to donate to my cause.  If you can help again, please do.  Every little bit helps.  This year has seen more cancer impacts in my life than the last several combined.  The mother of Emma’s close friend passed away in February. Members of my close karate community, and my close blogging community have had diagnoses. I’m sure you’ve felt its impact in your life.

If you can help, please visit my donation page.

There are some incentives:

For a donation of $50.00, either to me, or to Emma, I’ll write an approximately 500 word post in your blog on a topic of your choosing.  For a donation of $100.00, I’ll write a personalized short story of approximately 1,000 words, or two 500 word blog posts – both the story and the posts can be about anything you choose.  I’m flexible and eager to please!

1. Click here to donate to me, or here to Emma (either is ducky by me, it all goes to the same place!).

2. Leave a comment here letting me know that you did so.  Make sure to fill out the right email address in the comment field.

3. I’ll email you to schedule the writing and topics!  It’s that easy!

4. If you are in need free of copywriting, editing, design, or other creative work, hire me! 10% of your bill for services through May 15th will go to my Relay for Life fundraising, and I’ll match it with 10% of my own.

Over the coming weeks, you’ll see info about this in the blog fairly often.  My postings will continue to be about dadding and Emma, but will feature donate links.  Please, take advantage of them.  You can help another family not have a story like mine to tell.

Boston

April 16, 2013 Uncategorized One comment

As you’ve no doubt learned by now, yesterday a cowardly, weak man or group of men attacked my city. As of this writing, well over one hundred injuries have been reported, and at least three people have been killed.

One of those three was an eight year old boy.

Across the internet yesterday, I saw remarkable acts of generosity and kindness – the kind of things Bostonians have not previously been known for, but now will be. Just as we welcomed thousands of strangers into our city to run in our marathon, so did we offer up our homes to those strangers when they had no other place to go when terrorists attacked our home.

We are stronger than those evil attackers, whose ideas lack the power of persuasion and thus force them into acts of violence, could have possibly believed.

As this investigation stretches on as it may for days or weeks or years, we must remain as strong in our resolve, in the inherent goodness we have demonstrated on this dark day. It would be easy, so very easy, to stray from this goodness. Across the internet yesterday, from friends and acquaintances and absolute strangers, I also saw calls for the immediate death of those responsible upon their discovery. I saw people clamoring for vengeance from a place of hurt, and anger, and, of course, terror.

I get it. I have no idea what I would do if I happened to be the person to come across these small-minded, stupid, violent, and weak individuals who killed an eight year old boy. In my city. In the place I have called home even when I wasn’t living there.  This is the place where my daughter was born, where most of the truly monumental events in my life have occurred. If I had my hands on these wicked, subhuman pieces of offal, you can bet I’d want to be the one to see them dead. I’d want to reach my hands through their chests and squeeze their worthless hearts until whatever souls they have moved on to their eternal torment, but not before I caused them some real hurting first.  I really get it.

And this is exactly why we can not react this way. These terrorists, they don’t deserve a trial. But we do.

We can not let the the worst that these cowards have to offer overwhelm the best that we are. We can not let their act of terror force us to act as though we have been terrorized. We need to shine the light of day on these weak, pathetic men and show the world how very little terror they have the power to sow. We deserve the grand sight of these worthless people handcuffed and dragged into the courthouse, hiding their faces from the cameras – and by extension the people they have failed to break with their violence – and we deserve to know that they are no better than any other common murderer we drag into those courthouses to face the justice they have earned. We deserve to know that they are languishing behind bars for the rest of their worthless lives, without redemption, unable to break the system they have attacked.

These cowards deserve none of it. They deserve slow and painful deaths. They deserve to feel every second of the anguish their victims have felt and will continue to feel. They deserve our worst. When they get our best, though – when see every day they how they were unable to break our core principles with their act of terror – that will be the torment they will live with for a long, miserable, and just time.

And in this, we will persevere. Next year, we will open our city again to the world, and thousands of people will run in triumph, embraced by their loved ones and strangers alike as they cross the very line which yesterday divided the worst of humanity and the best of humanity. We will remember what happened yesterday.  We will mark this grim anniversary with a celebration, and somewhere, in a tiny, windowless cell, the bastards who did this will watch, and hear, and see exactly what they failed to accomplish while they spend the next many years waiting for the death that we refused to give them in our agony. And we will have won.

 

On Cancer and Ass-kicking!

March 20, 2013 acs, cancer, fundraising, karate, relay for life, teratoma, writing 5 comments

You may ask yourself “Self, is this that blog that that beardy guy used to write in?”  You’re in the right place (especially if you asked yourself that in a giant suit and a David Byrne voice).

Life’s been bananas over the past months.  Emma and I have traded illness and injury, and work got crazy.  The latter problem is about to be remedied, however, as I have been laid off as of the end of this week.  Get ready to see a whole lot more of me ’round these parts.

In that vein, I’d also like to give you the opportunity to see a whole lot more me around YOUR parts. Not in a sexy way.  Why?  Do you want me around you in a sexy way?  Ok.  Also in a sexy way, then.  But MOSTLY what I meant was that I’m offering up my services as a guest blogger!

“Ok,” I can hear you wondering, “that sounds AMAZING, but what’s the catch?”

Well, there is no catch!  Except this one, that is:

Each year, dear friends of mine from my karate dojo participate in the American Cancer Society’s Relay for Life in Natick. We raised over $6,000 dollars last year, and we want to top it this year!  For a donation of $50.00, either to me, or to Emma, I’ll write approximately a 500 word post in your blog on a topic of your choosing.  For a donation of $100.00, I’ll write a personalized short story of approximately 1,000 words, or two 500 word blog posts – both the story and the posts can be about anything you choose.  I’m flexible and eager to please!

If you’ve read much of this blog, you know the impact cancer has had on my life. Everyone in my dojo, and just about everyone in my life has been impacted in some way.  If you want to help fund finding the cure, here’s how you can do it:

 

1. Click here to donate to me, or here to Emma (either is ducky by me, it all goes to the same place!).

2. Leave a comment here letting me know that you did so.  Make sure to fill out the right email address in the comment field.

3. I’ll email you to schedule the writing and topics!  It’s that easy!

Over the coming weeks, you’ll see info about this in the blog fairly often.  My postings will continue to be about dadding and Emma, but will feature donate links.  Please, take advantage of them.  You can help another family not have a story like mine to tell.

Thanks, friends.

 

Turns out Warning Signs Are There for a Reason

March 12, 2013 dadding 27 comments

Friends, this week marks the 100th edition of YeahWrite, a truly amazing collection of bloggers and writers-and most importantly, a whole community of people I regard as friends. I’m linking up with them for the first time in months.

This week also marks the one year anniversary of this here blog, and hot damn, but I can’t thank you all enough for your support, encouragement, kind words, and even the editorial suggestions you send my way! Where I am in life, as a person and as a writer, is so much better than it was a year ago. So, thank you, thank you.

Picture this:

February, 2013. Walt Disney World. Your humble narrator is finishing his second and final day at the parks with his intrepid and fairy-crazy daughter by taking a ride on Thunder Mountain.

Thunder Mountain, as you may be aware, is “The Wildest Ride in the Wilderness!” Led around a badlands landscape by the voice of an old coot (“Gold! Thar’s gold in them thar hills” should be his refrain) the pair made full use of the front-of-line guest assistance card the daughter earned through a difficult medical life. Signs posted of dire consequences for those with high blood pressure (check), back problems (check), pregnancy (totally NOT check), loose morals (double check), and the like.

It also warned the riders to secure all belongings and eyewear.

Friends, your intrepid narrator did what he had been doing throughout his rides on the park: he ignored the warning signs (one might suggest he has the habit of doing so in his dating life, but who asked “one” anyway? Jerk.). Tower of Terror? Psh. It could not dislodge the glasses from his face or the pack from his hand. Mission to Mars? He laughed at its G-forces. Teacups? Ok, the Teacups gave him some angina, but whatevs. He survived, with all of his possessions intact.

When he looked at the face of his young companion as they spanned the back seat of the roller coaster, her grin made the hundreds of dollars spent and hundreds of miles driven immaterial. He reveled in the joy on her face, and felt it spread to his own. His wide grid changed the shape of his face, altering in minute ways the wind pattern coursing over the mountains of his visage.

Where the wind had once flowed harmlessly over the front of his glasses, it now insistently tugged at a low corner, and a tragic series of events unfolded-culminating in the glasses being ripped from his face, clattering on the tracks below, and being pulverized by the next coaster car to pass.

His grin turned to horror, and her grin turned to a Gaussian blur as his ability to see disappeared into the Floridian sky.

The moral of the story, friends, is to buy one of those nerd-straps for your glasses before going to the world’s most expensive theme-park. Or, you know, get LASIC.

Early Summer In the Garden of Good

November 28, 2012 birth, cancer, dadding, NICU, teratoma 2 comments

The summer of 2002 descended on Boston, warm and delicate, the heat feeling tentative and playful, quite unlike its oppressive August cousin. June is often my favorite month of the year, but this year still had much in the way of fear and doubt hanging up over it.

I was sitting next to Emma’s bed, holding her newly active six-month old body as she explored with hands and feet, tangled in tubes and perpetually setting off alarms. I was adept at deciphering their tones by now, knowing to reach up blindly with my right hand and finger the “silence” button, using instead my eyes and ears and slowly acquired experience as the father of a kid with tubes to know if she was actually in distress, or if she was simply manipulating wires into thinking thusly.

A nurse approached the bed.

“You should go outside,” she said.

“Are you kicking me out?” I joked, but I was a bit confused.

“Nope.”  She pointed her finger around my little family. “YOU should go outside.”

Emma had never been outside walls of a hospital before. I panicked at the thought, giddy and terrified.

“Ok,” I squeaked.

Thus began a hunt for all of the many things needed to show this little kid a different view of the world.  Portable crib. Oxygen tank. Portable suction macine. IV bags. Feeding pump, formula bags. Spare G-Tube. Cool mist. Trach collars. Spare trachs. Pulse oximeter. Emergency pager. A nurse with enough free time to accompany us. A doctor to sign us out. Blankets, and tissues, and gloves, and handwash.  And diapers and all of the other things a baby needs.

It was a lot, and the first glimpse I had of what moving around in the real would with this baby would be like.

About two hours later, after Emma had a nap, we were ready to go.  Wheeling that baby through the hospital, but not going to surgery, or tests, or something that would end up in more news one way or the other felt different.  It felt so normal that it felt strange.

Outside the second floor of one of the buildings in Boston Children’s Hospital is a lovely courtyard garden. Walled in red brick, it’s a hidden oasis of green and trees and benches and short paths.  Only about fifty feet on each side, it felt expansive and wondrous, and warm.

I looked at my child, ready to find the wonder and excitement of the outside on her face.  Instead, I found her foot in her mouth.

To an infant, everything is going outside for the first time.

Instead, I wheeled over to a bench where I could sit next to the crib, and put my hand on her tiny head.  I sat there for fifteen minutes or so, breathing in the warm, and the green, and telling Emma that the world had so many more colors in it, and so many more temperatures, and so many more things, and that it was her job to simply get better, and to go and see all of them.

Shortly, the nurse needed to get back to her other patients.  We gathered the equipment, waved goodbye to the trees, and moved upward on currents of summer wind to her home.

To a Place Where the Leashes are Made of Bacon, and Every Itch is Scratched

November 27, 2012 dadding, Yeah Write 34 comments

On the Friday before Thanksgiving, my parents’ dog Chloe died. She followed them down for coffee in the morning, and when it was time to stand up, her legs disagreed. She died at the vet, sedated and unafraid, surrounded by people who loved her.

Chloe was not always an easy dog to love. She came into the family not long after the passing of her predecessor Loxley, who was the kind of dog about which old men reminisce on their deathbeds. Chloe was a rescue dog, found chained to a tree in a cruel backyard, forced to bear a litter when she was just six months old, and with injuries and fears that plagued her the rest of her life. Boots seemed to scare her the most.

Chloe licked. On sweaty summer days, she licked the back of your knees as you ascended the stairs. It was maybe the grossest feeling in the history of feelings.  She licked if you sat near her.  She licked the air if you sat far away.  Perhaps the most frequently uttered phrase in that house in the eleven years she called it home was “Chloe, no licking.”

She was the only dog my daughter has ever really known.

On cold New Hampshire nights as Emma shivered with fevers and fear, Chloe would hop up on the foot of the bed, content to sit watch and provide comfort.  That ever-present licking was sometimes the only thing that would elicit laughter and smiles from her at her sickest.

In about an hour one Saturday afternoon, Emma taught Chloe the sign for “sit.” From then on, Chloe would see Emma sign, and she would sit. Emma would immediately rush over and take her licks. It was the damndest thing, this kid who can’t speak and this dog who couldn’t sign, communicating and loving the hell out of it.

The weekend before Chloe died, Emma squatted in front of the dog as she often did, admonishing her not to lick, knowing all the while that she was going to get licked silly, and laughing hysterically while she did. She reveled in the dog breath, bathed in the adoration of this well-loved mutt. She didn’t know she was saying goodbye.

The good news is that Chloe was ok right up until she wasn’t. She didn’t go slowly like many dogs, failing one piece at a time.  She was fine, and then she was dying.

That dark Friday, I sat Emma on the couch, and told her what had happened. She crumpled inward: wastepaper-faced, streaked with unending tears. She kept saying “I don’t want her to die.  I don’t want her to die.”  So I sat on the couch, and I wept with her, stroking her hair and tasting the saltwater of her ocean of sorrow.

After half an hour or so, she got herself under control, and the reailty of what had happened hit her. “I’m never going to see Chloe again,” she said, and the sobs came anew.

I am an atheist. I do not believe in God, and having sat in foxholes (admittedly, training foxholes, but foxholes nonetheless), I know the adage that there are no atheists in foxholes is a load of bunk.  I do not believe that I will exist as a spirit or a soul or any form of sentient being after I die.  I do not believe in heaven.

And yet, faced with the overwhelming sadness of my daughter, I told her that Chloe was in dog heaven now, playing with Loxley.  Emma smiled at the thought, even though she had never known Loxley, and she said Chloe was probably licking her to death.

In this, I believe.

All Hallow’s Read

October 25, 2012 all hallow's read, writing 4 comments

This is a story for children, inspired by Neil Gaiman‘s amazing All Hallow’s Read project. I wrote it in 2011, but have tweaked.  If anyone wants to illustrate, get in touch!

 

Under Alistair’s Bed

Alastair was a very brave boy.

He knew this, because his father told him every night after night-time stories but before lights-out.

“Alastair,” he would say, “you are the very bravest four year old boy in this house.  So tonight, dear son, tonight, you have nothing to fear.”  And he would kiss him on the head with his scratchy lips, and he would kiss Mr. Scruffbunny with his scratchy lips, and he would leave the door open just the right amount, and he would turn off the light.

Alastair was afraid, however, because there was something under his bed.

He tried to pretend it wasn’t there, like the brave boy his father believed him to be.  He sat in his bed and counted all the way to twenty-seven – the very highest he had ever counted – before he couldn’t take it anymore and decided to peek.

Very, very slowly, he turned sideways under his blanket and poked his head down the side of his mattress.  He kept his eyes scrunched very, very tightly closed so that whatever was under his bed couldn’t see him either.

Finally, when he felt his hair touch his floor, he popped his eyes open – snap! There, right in front of his eyes was a terrible monster staring right back at him!

It had a big, round head with horrible black and white spots.

That big ugly head had a whole pile of gross skinny arms underneath it, like tangled spaghetti.

Those tangled arms had big, spiky feet on the end.

“DADDADDADDADDADDADDADDADDADDADDAD!” yelled Alastair.

Alastair’s dad came quickly to Alastair’s door.

“What’s wrong, buddy?” he asked.

“MOOOOOOOOOONNNNNSSSTEEEEEEERRRRRR!” yelled Alastair, pointing under his bed and scrunching his eyes closed.

Alastair’s dad picked him up gently, and said “Let’s see about this monster, kiddo.”

“It had a great big round head, with black and white spots all over it!” said Alastair as bravely as he could manage.

Alastair’s dad bent down and looked under the bed.  He reached his hand in…and pulled out a soccer ball.  “Did it look like this, Alastair?”

“Yeah!  Just like that, dad!”

“What else did it have, Alastair?” he asked with a sleepy smile.

“It had gross goopy arms like a pile of spaghetti!” he said.

Alastair’s dad bent down and looked under the bed.  He reached his hand in…and pulled out a tangled old jump rope.  “Did they look like this, Alastair?”

“Yeah!  Just like that, dad!”

“Hmmm.  Sounds spooky.  Did it have anything else, brave boy?” his dad asked, a tired sparkle in his eye.

“Yeah!  It had great big feet with big pointy spikes on them!  They were SO SCARY!”

Alastair’s dad bent down and looked under the bed.  He reached his hand in…and pulled out Alastair’s soccer shoes.  “Did they look like this, Alastair?”

“Yeah, just like that, dad!”

“Well, brave Alastair,” said his dad thoughtfully, “you sure did have something under your bed – a great big mess!  But no monsters.”  And he picked up Alastair,and laid him back in his bed,  and he kissed him with his scratchy lips, and he kissed Mr. Scruffbunny with his scratchy lips, and told Alastair he loved him forever, and turned out the light.

Alastair snuggled under the covers, brave and warm, and went safely to sleep.

And so did the monster who lived under his bed…

Plan

October 5, 2012 birth, cancer, dadding, teratoma 8 comments

“What will you do if she dies?”

 

The social worker looked across the generic office, compassion weighing down the curves of her face, the heft of her words pulling the slack toward the floor.

 

We had just moved through an awkward reintroduction. This social worker had been a colleague of mine six years prior, in a different world. She was someone with whom I had interacted on a near-daily basis, and whom I very much liked and respected. Here in this otherworld of transition and torment, however, she was out of context and I had not recognized her. She was gracious and understanding, but I was off balance—and I had not started off particularly on balance.

 

It was in the weeks after my daughter had been diagnosed with her tumor, but before she was to be born. These days were an unrelenting sandstorm of fear-laden boredom, defined by constantly shifting dunes of depression and terror. Test after test showed worsening news, the tumor was growing remarkably fast, and it was beginning to stress the vital systems of my not-yet-born daughter.

 

And so they had us talk to a social worker.

 

“What do you mean,” I stammered. “I’ll mourn. I’ll crumble. I don’t even know what I’ll do when she lives.  How am I supposed to know what to do when she dies?”

 

“Will you have a funeral?”

 

With that, two doors to unimaginable futures opened wide, and shot beams of light along their walkways.

 

In one, I visited the grave of a daughter I never knew in life, but whose vital and living hand had brushed mine through the belly of her mother. In this future, I envisioned a gathering, and acknowledgement of the death which had preceded life but not import—but I also saw myself anchored by the grave of a daughter I would refuse to abandon. I would never be able to leave the region in which I lived. I would never be free to remember and move past, and yet I would always have this place to come, and watch over, and do the only parenting I would be allowed.

 

In the other future, there was nothing—no grave, no funeral, no acknowledgement that this being had been, even if she had never lived.  I was not free, rather, I was adrift. Bereft of the daughter I would never know, I had nothing over which to mourn. I was full of the grief I would never get to express, full of guilt, full of regret, and full of a sense of abandonment.

 

I looked as far down each of those paths as I could see, looking for something brighter in either direction. There was no sparkle, no crescent of orange on an eastern horizon. There was nothing.

 

And so, with the leaden heart of a condemned man, I looked across the room at my newly reacquired friend, and planned a funeral for my daughter.

Preach!

September 26, 2012 ads, birth, culture, dadding 2 comments

Hello Friends,

Yesterday, I was honored to lead the Unitarian Universalist Association’s Tuesday morning chapel service. I tried to make the most of it, as this is likely the closest I will come to ever delivering a Ted Talk.

Several of you have asked if the service would be recorded, and, in fact, it was:

UUA Chapel – Dads in Ads, or Fathers Are People Too. September 25, 2012

Bear in mind that it is, in fact, a chapel service – so there are some introductory remarks and ritual, and even a hymn or two.  The total recording is less than thirty minutes.  If you are impatient, I think I really get going about 11 minutes in.

Enjoy!

 

 

Held

September 17, 2012 cancer, dadding, NICU, teratoma 4 comments

The third occurrence of the teratoma was underway, and I was powerless to stop it.

It was the first week of March, and Emma was just about eleven weeks old. These were eleven impossible weeks, weeks we should never have been granted, and weeks which felt gossamer. They misted and veiled with the knowledge that they could again be revoked, that the visible progress of this new tumor could hew the line between “here” and “gone,” and I would be left with nothing but a lifetime of absence.

Arrival at the NICU began with two minutes of hand-scrubbing, an excision of the outside world Emma had never known that she might live long enough to know it. The harsh, granular soap left my hands raw and chafed, dried in the New England winter. People who shook my hand in the years leading up to Emma’s birth would never have wondered about which line of work I was in, they simply would have known that it was indoor, and gentle. I was now engaged in my life’s hard labor, however, and my hands were toughening up, hardening against trials unmanageable by their work.

After a thorough drying and a spritz of hand sanitizing foam, I would enter the unit itself. Each entry forced a moment of gathering, of pulling the wool of our inner armors together into a semblance of protection. Here were babies, and here was where some of them would never leave. Here were babies, and here was where most of them would leave long before my daughter would, not having a further worry in their healthy lives. Both kinds cut deeply.

This week, Emma’s bed was almost directly in front of the doors to the unit. I could walk in and see her as soon as I crossed the threshold. I would walk to the side of her bed, and sit in the hard rocker permanently placed beside her crib. At this point, I had not yet been able to hold her. At first, her endotracheal tube had been to precarious in its placement, and any movement could have dislodged it and killed her. After, the plethora of wires, tubes, and surgical drains made it impossible to safely hold her. So I sat, and touched her head, and held her tiny hand, and talked to her about the world outside.

This week, though, her last surgical drains had been removed.

This was the day I would first hold my daughter.

Sitting in that hard chair, rocking and watching daughter move in that random, jerky, and disjointed way only babies can manage, I began to sweat. I had built up this day, this moment, this milestone as a measure of “everything is going to be all right. If I can just hold her, she’ll be ok.” Instead, this new tumor had arisen. Holding her went from reassurance that everything was going to be ok to “If you don’t do it now, you may never have the chance.”

As panic danced and whirled about in the darkest of my mind shadows, a nurse came along and slid her hands under Emma, lifting her several inches into the air. Wires swayed beneath her, willow branches in a gathering storm. The nurse turned, saw the panic in my eyes, and said “No. You need this. She needs this.”

With that, she placed Emma in my arms, and the world disappeared. Gone were the alarms, and the smells of the hospital, the worried pacing of the other families. Gone were the doctors and nurses and technicians, the detritus of ongoing medical work, the fear and the dreams.

All that remained was my daughter.

I talked to her differently that day. I talked to her about the milestone, and about how much stronger she had become over the last two months. I talked to her about how much stronger she would yet need to be to face what was coming. I talked to her like a baby, and she slept like the same.

I wept, and I grew, and I bested the demons of panic. This girl was protected.

And so was her father.

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