the whole story

A friend of mine asked me recently for a quick summary of what my son has been through. He wanted to know a little backstory on our life with him and before him and his diagnosis and prognosis and all that. I sat down and ran through the list. Then I ended up writing something I should have written a long time ago.

Jess and I met at her brother John’s wedding in June of 1999. I was with the other groomsmen, setting up chairs. The door to the sanctuary blew open and I saw my future wife standing outside in the parking lot. Not thinking, I quickly slammed the door, turned to her brother, and yelled, “There’s a beautiful girl outside!” All the groomsmen ran to look. Then John sighed deeply and said, “That’s my sister.”

I spent the rest of the day trying to get her attention. I stuck grapes in my cheeks and acted like a monkey. You know, stuff like that is tough to resist. When that didn’t work, I wrote my number on a piece of paper tablecloth, ripped it off, and gave it to her mother.

My job was lighting the floating candles on the banquet tables. I would pick one up and touch the flame to the wick, and drop the candle in the jar of water, and Jess followed behind me, lighting the floating candles again. She’s been cleaning up my messes ever since.

After five years and two healthy daughters, life was looking pretty rosy. We decided to go for one more child, and might have had more if Fin hadn’t been such a surprise. And boy, what a surprise. His birth was difficult, he was huge, and after a lot of pushing, Jess had an emergency c-section. I was allowed to peer over the curtain and see my only son. I cut the umbilical cord. Then they took him to the NICU and we went back to our room and had supper, all smiles.

In the middle of our dinner of hospital pork chops, a doctor came to visit and said our son was not breathing so well. He said they gave him oxygen and C-PAP, and we’d hope for the best. We put down our forks. He was just born an hour ago, and now we were hoping for the best? What did that mean?

The next week was not easy. He got worse. He was put on a ventilator. He ended up on an oscillator. There was a feeding tube down his nose. They shaved part of his head and put in an IV. We got to hold him every now and then, but there were all these tubes. We smiled and put on our bravest faces. Then there was the family meeting. After a month of trying to wean him from the ventilator, he was not tolerating it, and the doctors were out of ideas. We were sent to Portland and a new team of doctors would weigh in with their opinions.

They immediately had things they wanted to try, and he had surgery to close a vessel between his heart and lungs. It worked, and the next day, he was looking like a different kid. Then he coughed just right and the device they put in place popped out. They had to do the procedure all over again. We spent the first surgery nervously tapping our feet and learning how to play Sudoku. We spent the second surgery in the bar.

For five weeks, we stayed with my in-laws in Portland. For five weeks, I was out of work. They made me sign FMLA paperwork and saved my job. Fin got better and better. He was weaned off oxygen successfully and prepped to go home. The day before we were scheduled to return to Bangor, we stopped in his room to see him back on oxygen. We asked what was happening. The nurse said she had a theory; he didn’t need the oxygen, he needed the flow. She couldn’t explain it. But as it turned out, she was absolutely right.

However, pursuing that thought was put on hold. On New Year’s Day in 2010, Fin woke up screaming. My son hadn’t made much of a sound up until that point. Months of being intubated had left him with very little voice. But that morning, his cry was loud and clear. We picked him up and found a diaper full of blood. We rushed him to the hospital and he stayed there for a long time. They diagnosed him with ulcerative colitis, but he also had RSV. He was put back on a ventilator. Then back on an oscillator. We were right back to the day he was born.

Slowly, his systems started shutting down. His lungs, his heart, his kidneys were all affected. RSV was ravaging his already sick body. Then the doctors found that air was trapped in his abdomen, and it was not supposed to be there. They rushed him to the OR for emergency exploratory surgery. He had a perforated bowel and the equivalent of a bowel movement in his abdominal cavity. The doctors told us they could take out his entire small intestine and leave him a short gut kid, or we could sew him back up and let him go peacefully. We were all for the latter. But our pastor and pediatrician were in the room, and I could not make that decision with a good conscience. I said if there was a chance, we had to take it.

I didn’t have to make a choice. Half an hour later, the doctor came out and told us that the pieces of intestine he’d given up on completely had turned pink again. He only had to take the bad stuff, and then give him an ileostomy, and Fin would be okay. After calling everyone in the family and telling them Fin wouldn’t make it through the night, we called back and told everyone about the miracle. Fin would pull through.

And he did. He got better and better. We took him home and fed him intravenously and changed his sterile dressings in our kitchen. He got bigger and stronger. Eventually, he was able to lose the bag that collected poop right above his belly button. His colon was reconnected. Things were looking up. Until he got sick again. We noticed that although he was sleeping and his chest would rise and fall, he was not moving air. After a few nights of this, he turned blue, and stopped breathing. We rushed him to the hospital again. And again, they told us, they had to start over. We were back to square one.

Finally, at eleven months of age, they discovered something. His airway, which they knew was floppy from looking down on it from the top, was scoped with a camera and a light. They found that it was completely flat. In fact, it was nearly nonexistent. How the kid was able to breathe at all was impossible to tell. But he had done it. He’d done it for a year. The roomful of doctors saw pictures of his airway on the screen and all gasped. We were sent back to our room with a diagnosis of severe tracheobronchomalacia. His airway was floppy and weak all the way down into his lungs. Everyone who had taken care of Fin apologized up and down. They didn’t know how they missed it. We said it was okay; survival had been number one. But, we asked, what next?

No one knew. We found ourselves in Boston. The doctors there determined that Fin should have a tracheostomy. For five weeks, Jess stayed with him in the hospital, and I traveled back and forth with the girls. For five weeks, Fin was unconscious on drugs, a hole in his stomach so he could eat, and a hole in his throat so he could breathe.

And he has thrived. He’s grown. He’s found his voice, and then some. He’s gone on road trips with us, charming people everywhere. He’s been to Disney World twice. And he’s been through Pre-K and kindergarten. He’s gotten sick a few times, but nothing too scary. He sees a specialist for every major system and they make adjustments as necessary. When we think back on what he’s been through, it seems like an unfair lifetime of problems for one little boy, but he’s managed to survive. I think back on that nurse who told us he didn’t need oxygen, he needed flow. She was right. The vent gives him the flow and the pressure to keep his airway open. Her name was Posey, and I think of her every time I look at Fin’s trach ties, which are made by a company called Posey, and it says so right on the back of his neck. They told us that with tracheobroncomalacia, the first year would be the hardest. Boy, were they right.

Sleepless Love

Isnt it just sad

That you’re awake overflowing with emotions
Yet there is no one with whom to share them with
Your veins are pumping adrenaline
Just like when she’s about to kiss you
But youre just sitting in a dark room

You try to listen to music
To distract your thoughts
But suddenly every song is of love
They all remind you of her

Of the things you been wanting to tell her
Of the things that you been wanting to say to her
If only you had more balls
She could be in your arms right now

It is these moments that make you realize
How much a stranger can sway your heart
No words are needed
The silence and the gleam of her eyes
The light of her smile
Is all that you needed

How painful are these sleepless nights
Chains of sweet torture
The ones you cannot break free from
Your only hope is to
Simply accept that for those few minutes you saw her
It will take years to forget just one minute

I need my future wife to understand that that butter container isn’t really going to have butter in it

lol my dad said that i would always be single because i like girls and my future wife will probably leave me in the future because we can’t have biological children and i pointed out that i could adopt and he said that it had to be biological children, because OBVIOUSLY the only thing that bonds two people together is having biological children. 

and so any future girlfriend i have will eventually get tired of me and leave. 

also my mom said that i can’t possibly be a lesbian because no girls have ever been attracted to me. i don’t think being lesbian works like that, but whatever floats her boat.

i’m not even mad. i’m just amused really. XD

My Mother Used To Ask Me

She asked If I ever felt anything for someone

As if the breeze aroused the sleeping tree

She asked if

Someone had made me fall over the cliff

Gravitating towards the desire of kisses

Like the ocean demands the shore it misses

She asked if

Someone had tattoed my heart with their glyph

Someone whom i wanted to hold hands

To not be devoid of vegetation as the desert sands

And maybe a little more

The desire to feel her electrifing essence; like the thunder Goddess Thor

I always said I did not

It was not was i sought

I thought that was stupid

That whole ordeal of cupid

I had no time for fuckery

No time to play tom and jerry

My time was too valuable to waste

On something that gave no paste

My time is only for school and work

My time is only to become someone in life

My time is only to gain knowledge

My time is only to gain sustenance

I used to think all of this

I believed all of this would bring bliss

I became all of this

Until I met you

The day you smiled i knew,

that like you, there is only a few

To my black and white monochromatic view,

You were the only beautiful colorful hue

I soon realized

That all i cherished was idealized

My goals had no life

All they would be is an empty rife

Even if they deemed successful

Rejoicing alone would be stressful

Nothing but another deadline to meet

Another boring day with the same fleet

But with you in the picture

Oh baby the will be no stricture

If you existed in that moment

I would infinitely spread our romaunt

You would make it all worth it

You would be the best befit

The adventure would have meaning

Just you and I with no intervening

My dearest love

Where are thou, ask the dove

Who carries this message;

White like the snow in winter

Fading into the distance like linter

Subsiding into the muddy green

I will become the castle to the flower queen

Beautiful rare rose

Whom my heart chose

You are the lovely panorama

I wish to see for the rest of my days



One day (a while ago now), I was idly day dreaming of some future date with Danielle (not her real name). 

My wife Stacy (not her real name) walked into my office. “What are you doing?” she asked.

“Looking at upcoming theatre shows.“

Stacy and I started a conversation about something else, while I scrolled through the listings on my computer screen. Just as Stacy started to reply to something I had said, I reached the bottom of the list and saw a show I recognized.

“Matilda!” I exclaimed, interrupting my wife.

Stacy looked at me funny. “That’s a musical,” she said.

“Yeah, Danielle is interested in seeing it.”

“What?!” Stacy yelled.

I tried to explain. “She mentioned it the other day.”

“You hate musicals!”

I started laughing. I tried to say, “I don’t hate musicals,” but I couldn’t keep a straight face.

“Yes you do hate them! You used to say, ‘Musicals are stupid, why can’t they just speak what they need to say?’”

I started laughing harder, like a kid caught red handed at the cookie jar, all excuses exhausted. 

“Look,” Stacy continued, “it’s okay if you like the musical. But maybe you won’t. Then you’ll be all torn, because you can’t tell her the truth, it’s too soon, she’ll break up with you for lying. You know you need to be honest, but if you’re honest, you might lose her.”

At that point, Stacy broke into song.

Who am I?
Can I watch a play unfolding musically?
Pretend I do not feel the agony?
This innocent woman by my face
Who judges me to love this place

Who am I? 
Two four six oh one!

I was laughing so hard that all I could do was try to not fall out of my chair.

Stacy continued, “Look, if she turns you into a wine tasting, musical loving….all I can say is you had better go to musicals with me too!!”

dear future wife,

i want you on your best days so i can witness that intoxicating smile of yours but, i also want you on your worst days so i can comfort you and remind you how amazing you are. how blessed i am to have you in my life. i want your tired smile and your drunken self, so i can kiss away that hangover. i want you on nights you can’t sleep so you can wake me up and tell me what’s on your mind, talk my ear off until the sun rises. i want you when you’re laughing at yourself because that is honestly the most beautiful thing ever. i want all of you, forever and always.

your future wife

—  loveisexpired (“dear future wife” page 144 out of 365)

To my future wife,

I hope you know the handful I am that you’ll be responsible for. Sometimes I leave my shoes or coat by the front door. I’ll start a hundred art projects in a year and won’t finish half of them. Books, too. I’ve been known to throw temper tantrums in public. Half of my half of our marriage will be affected by my parents’ marriage. That includes my judgmental mother and my absent father. I’ll probably tell my sister everything. I forget to brush my hair and take sleep aids when I don’t need to sometimes. I cry a lot, but I hate tissues and blowing my nose. I may need you to do all the talking when we go to make a major purchase because I’ll probably go blank.

I’m forgetful and messy and rather nervous. But I’ll always remember your favorite Bible verse, and how your mother’s birthday is close to mine. I’ll do my best to have a lunch packed for you, notes included, ready for you before you leave. I dread the moment you ask to listen to me play my guitar, but I’ll push through it with shaky hands. I won’t even stop when you’ve walked out of the room, because I bet you’ll stand outside the door just to listen a little longer. I’ll crawl out of bed quietly so I can brush my teeth and come back to kiss you just as you reach for me when you wake. And if ever someone steps out of line to make a pass at you, I’ll be sure to slide my hand in your back pocket and kiss your ear in front of them.

I’m not easy to handle all the time, but I’m doing the best with the heart I was given and I’m giving it to you. You are the love of my life, and if you’re willing, I’d like to spend it by your side.

To My Future Wife

I don’t know who you are yet.  I don’t know what you look like.  I don’t know the color of your eyes.  I don’t know the color of your skin.  I don’t know your name.  There are a lot of things that I don’t know about you, but there are a couple of things that I want you to know.

You’re Already Beautiful.  Congratulations, babe, you did it.  You are already beautiful.  Seriously.  If beauty is a game, you’re a pro.  You are perfect already.  You were beautifully and wonderfully made.  You have nothing to fix.  Let me say that again, you have nothing to fix.  God did not mess-up on you.  I know what society is telling you.  ”You have to look like this, wear this, and have this in order to be beautiful.” Nope.  You’re already beautiful.  Beauty is more than what you put on in the morning.  You don’t need to lose weight to be beautiful.  You don’t need to pack on the make-up to be beautiful.  You don’t need to have all the curves installed to be beautiful.  You don’t need to have perfect skin to be beautiful.  You don’t need to act a certain way to be beautiful.  You don’t need to wear certain clothes to be beautiful and you definitely don’t need to take them off to be beautiful.  Oh, and you don’t need to have sex with me to be beautiful.    You’re already beautiful.  Feel free to grow to be a better, healthier, more confident you.  In fact, I encourage it.  But let me remind you that when it comes to being beautiful, you already won.   You are beautifully and wonderfully made.

Babe, keep your goodies in your basket.  I get it.  I really do.  When you have a nice car you want to show it off.  If you have a nice body, likewise, you want to show it off.  But, what makes a Lamborghini stand out from a Honda Civic?  I see Civics all the time.  Everywhere I go there is one of those bad boys sitting in the parking lot.  I can count on one hand every Lamborghini I’ve ever seen.  It is always exciting to see one of those.  The Honda, not so much.  Don’t get me wrong, your goodies are always going to be good.  I’ll say that again, your goodies are always going to be good.  But, if everyone and my mom has a look at everything you’re showing off, I’m not feeling like as much of a lucky ducky.  So please, for me, keep your goodies packaged away.      

You’re a princess worth fighting for.  I said “princess.”  You know, the princess you always wanted to be as a little girl?  Yep, that’s you!  But here is the deal, if you are a princess, you have to act like a princess.  The story goes something like, “The princess waits high up in her castle waiting to be rescued by her Prince Charming (thats me).  This ‘prince’ has to cross the treacherous lands, fight all the battles, storm the castle, slay the dragon and THEN he gets the princess.”

It’s a pretty cool story, really.  Prince Charming doesn’t just walk up to the castle doors, spit a little game, and off they go to happy ever after.  You’re a PRINCESS.  You’re worthy of a fight.  If you give yourself to someone who isn’t willing to fight for you, he isn’t worthy to be with you.  Your prince charming isn’t going to fight to take your purity, he is going to fight to protect it.

Don’t settle for me, make me go to work.  Don’t let me sweep you off your feet without putting in any work.  Remember, I have to “cross treacherous lands, fight all the battles, storm the castle, slay the dragon and THEN,” I get the princess.  Make me go to work.  Don’t let me have you easy.  You deserve a gentlemen.  You deserve chivalry.  Do not settle.  There are going to be a lot of guys who come through who might look like me, they might be dressed like me, and they might talk like me, but if they don’t put in the work like me, they don’t deserve you like me.  I am out here waiting for you, don’t settle for someone who doesn’t deserve you.  Don’t settle.

Our fairy tale will happen, but remember it doesn’t go from ‘once upon a time’ to ‘happy ever after.’  There is a battle that goes on in those middle chapters.Sometimes I am going to mess up.  Sometimes you are going to mess up.  I am going to say things I don’t mean and mean things I don’t say.  Sometimes I will forget that you are a princess and sometimes I will get distracted. But, together, through love, patience, communication, and the grace of God, we are going to win.

I understand I might have written this a little late, but I don’t care who you were yesterday, I care who you are today and who you will be tomorrow.  Make a change if you need to.  Let us grow together.  It is not too late.  It doesn’t matter what you’ve done or how many of these items you have missed, it just matters what you are going to do now!  You are beautifully and wonderfully made by the hands of a perfect Creator, live like it!

~Prince Charming~

My future wife

I hope my wife is good at hair.
I hope she is good at hair so she can do our future child’s hair every morning before they go to school because she will know that I am terrible at it.
I hope my wife is patient.
I hope my wife is patient because sometimes I need more than a minute to figure everything out.
I hope my wife is bold.
I hope my wife is bold so she will educate any discriminating parents of our future child’s friends.
I hope my wife is strong.
I hope my wife is strong because even though I am strong enough to carry her burdens on my shoulders, I will need her for the times that I break.
I hope my wife likes to cook.
I hope my wife likes to cook because the last time I tried to boil water, I ended up preheating the oven on accident instead.
I hope my wife is fearless.
I hope my wife is fearless because spiders will always scare me and I will always run to her to kill it for me.
Lastly, I hope my wife is ready.
I hope my wife is ready for every adventure, every doctor visit, every love letter, every TV show marathon, every concert, every kiss in the morning, and every kiss at night. I hope my wife is ready to love.

what i look for in a girl (maybe my future wife?)

  • as beautiful on the inside as she is on the outside
  • blond hair blue eyes
  • short (cause im 6'3" and love it when you have to stand on your tip toes to kiss me;)   
  • curves
  • sweeter than cherry pie
  • lets me meet her parents 
  • lets me smooch her on the cheek anytime anywhere
  • on a lazy day will watch old cartoons like scooby doo and disnesy movies and cuddle on the couch
  • doesnt mind that i will randomly and spontaneously bring her flowers for no reason other than i love her
  • will talk to me for hours about anything 
  • makes me smile just by looking at her
  • will let me just hold her in my arms and fall asleep together
  • be able to trust her 100%
  • wont randomly stop talking to me for no reason
  • will let me hold and hug her if shes sad, and will do the same for me
  • some day will bring a new life into this world with me
  • will let me hold her hand and show her off around town
  • will sing along with me to songs on the radio
  • wont mind that i will tell her how beautiful she is every day of my life, and when i say it i’ll mean it, just as much as the first time i’ve ever said it.
  • will help me construct a pilllow fort to cuddle in
  • she better like trucks that are jacked up all the way to heaven
  • she better like to roll some coal
  • lets me have a big garage and lots of jacked up toys
  • i hope she likes mudding
  • knows how to cook and will teach me how to cook and actually just end up making out while supper burns in the oven
  • lets me kiss her to  calm her down
  • lets me play with her hair ;)
  • lets me play my guitar for her 
  • will let me teach her how to play guitar/already knows?
  • wears cowboy boots  … or (cowgirl boots? dunno sounds kind of insulting?)   boots.. yeah i guess boots works,,,,,….. like all the time, and i hope she wont mind that i even wear my boots when i wear shorts.
  • lets me touch her butt like whenever ( this ones for me i dont even care what you think)
  • ok so im already in love with the theoretical girl i just made up……
  • and in that case, i hope my future wife exists.
To my future Wife.

Late night car rides. Random dance sessions. Long hoodie hugs in the fall and winter. Good morning texts. Spontaneous adventures. breakfast, lunch, dinner, and of course the midnight snack run. Deep conversations, and stupid ones. tears and laughs. The presence of GOD in our lives always.

All of these things and all the love I can give to you. To whom ever you are this is my promise to you. Til the end of time.

a letter to the girl i will marry, from me, another girl:

i will put myself between you and large insects, busy highways, mean people, and scary things in general. 

i will hug you when i am sitting down and you’re standing so that i can press my cheek against your boobs. (i love your boobs.)

i will make you whole wheat pancakes on sunday because whole wheat pancakes are amazing and you will be blown away by my cooking skills. 

when we snuggle and i’m the big spoon, i will slip my hand under the hem of your t-shirt and rub your tummy until you fall asleep. 

i will write poems inspired by the dimples in your cheeks or the scent of your body wash or the way you sleep with your head on my chest.

i will look after you and give you lots of orgasms and love you unconditionally for as long as i live.