On Being a "Difficult" Parent

I'm officially intransigent. I think that means "difficult."

The last time Max had an infusion, one of his inflammation markers was elevated. I've learned that predicting a Crohn's flare up can be a guessing game er, prediction activity involving a slew of lab results and reports of clinical symptoms.

He'd just had an ear infection and ten days on antibiotics, so wonky labs could have been innocuous or a "false positive." It was also one result from a few inflammation markers checked every infusion--and the other numbers were fine. Evidently his GI specialist didn't think so, and through a rather uncomfortable round of "let's play triangulating communication" with me and his nurse a week after those labs, I learned he wanted to move Max to a six week rather than eight week infusion schedule.

Look, I know my kid is sick. He spent nearly five weeks in the hospital last winter before having three surgeries through June. But--and this is pretty crucial--Max hasn't reported a Crohn's symptom since the first surgery liberated him of a very sick colon.

I don't harbor illusions that my child is healed and cured of this disease. We travel to Kansas City for infusions every couple of months (I guess six weeks now) since last January. We make sure he takes his vitamins and anti-anxiety meds. I monitor how much he eats, his exercise--everything. I am not happy that the doctor is changing treatment based on a single lab result one time and the apparent dismissal of my explanation that Max has been symptom free (through the nurse triangulation channel, of course). I certainly am not happy such a thing happens without any examination or discussion with the patient.

In fact, his specialist used the word "intransigent" in an email to the nurse with whom we were triangulating to describe my attitude toward Max's symptoms in the past. Go on, look it up. Google that bad boy. Kind of sounds like an insult, right?

Before Max's hospital marathon, I may have misread some symptoms. I may have not understood the gravity of the disease and how things could spiral quickly. Max also struggles with anxiety, and I know the anxiety contributed to his downward spiral. This is how things happen with chronic diseases as families learn to manage and cope.

Things are different now. He has no colon. I monitor him more closely. He's receiving treatment and therapy to manage the anxiety And he's been doing well.

But now I'm a "difficult" parent. Intransigent. Pig-headed and stubborn and, in his specialist's opinion, blind to what's really going on with Max.

No.

I live with Max. I know what's going on. I know how many times he has a bowel movement every day. I know how he's feeling and what his worries are. I know what math group he's in and the book his reading group is devouring. I know his favorite Pokemon and the name he uses on Minecraft servers. I know he asked for a pill form of Benadryl before his infusions (given before Remicade) and I know the specialist hasn't bothered to change those orders to meet his request since making that request nearly six months ago. I also know that same specialist never had a conversation with Max's surgeon last spring. I know that's not necessarily how medicine works, but I know that's how I work. I know I expect more communication than a couple of phone calls with a nurse and a naughty note about me from the specialist to that nurse. I know I'm frustrated and sometimes mad as hell.

And I know, most of all, I love my son and will advocate for him to the best of my ability,

If that makes me "difficult," bring it on.

"My dad is pure evil." 

(Elliot, age 5)

Living in Fear

My son, Max, turns ten at the end of the month. In December 2011, only about a week and a half after his youngest brother, Elliot, was born, we rushed Max to Children's Mercy Hospital in Kansas City, Missouri because of blood in his stool, a positive test for malicious bacteria, and some joint pain. Five days, several blood tests, a colonoscopy, and sundry medications later, Max was discharged with a diagnosis of Crohn's disease.

He's had struggles over the last four years, little Crohn's/Colitis related things that anyone familiar with this monster will know well. Things took a nose dive this past December, and between mid-December and the end of January, Max spent five weeks in the hospital. The doctors tried new meds and more meds, but in the end, my almost ten-year-old had his colon removed on January 20th. All of it.

I do not like to live in fear. Show me the monster, and I will meet it head-on. Now that Max has had a very necessary surgery, he's living with a "temporary" colostomy bag. Temporary in quotes? Yes. He's had one subsequent surgery to resection/restructure his small bowl, and we should have another to "reconnect" his "parts" down the road. Here's the fear and frustration part: his GI specialist and surgeon disagree as to the timing of this final surgery. The GI doctor is full of "what ifs" and "possible problems." Talking to him is a lesson in bodily horror, something with which I struggle, both as a writer and a human. Yes, there are possible problems if we reconnect. The surgeon is more optimistic. Neither agree--neither have even spoken to each other as of this writing--but we are faced with a decision: When to do the final surgery.

I do not like to live in fear.

I've learned all too well that life will bring tragedy regardless of what we do. I lost my father to brain cancer, my first wife to postpartum psychosis, and Max has this awful disease. None of them "asked" for it with dangerous living. This isn't another story of someone "getting what he deserves." I cannot and will not believe in a prosperity gospel when two good, caring adults and one innocent child face such monsters. Bad things happen to everyone, and we are defined by how we respond.

So what to do about Max? In two hours, I'll listen to his surgeon make a case for re-connection. Max has expressed his lack of love for the bag--something that if things do not go well after re-connection, he may have to live with, anyway. I've always been one to steer into the storm rather than trying to run. The storm is coming either way, and when we lie to ourselves about having control... well, that's a fast track to fear.

I will not live in fear.

Our National Park Tradition

I feel another "significant" post brewing, but it will wait for another day. Today, I bring pictures from our recent trip to Rocky Mountain National Park and one of my favorite stories about Aimee.

National Parks were/are an obsession of ours--I still have our map of all National Parks hanging in the basement (with color-coded pins indicated which family member has been where). In 2000, Aimee and I took a road trip to Yellowstone and Grand Teton. We camped for five nights--four of them in Yellowstone--and enjoyed all the sights. The view of the Tetons from Jackson Lake... spectacular. We rented a boat, a small craft with an outboard motor, and headed onto the lake. The boat's owner gave us a bit of advice which caused contention:

Stay within a mile of shore.

Of course, Aimee (being the adventurous type she was), aimed the boat for the mountains and gave it the gun. My knuckles whitened as I clutched the gunnels.

"What are you doing?" I asked.

"Staying a mile away from shore like he said," she said.

"No. No. No." I glanced over my shoulder at the swelling waves. The tiny boat would easily capsize in the middle of Jackson Lake. "He said within a mile of shore."

She didn't agree, of course, but the look of sheer-animal-panic on my face convinced her to turn our ship around. Aimee and I weren't able to share enough National Park adventures before her death (could there ever be enough National Park adventures?), but the boys and I will keep going...

I hiked to Fern Lake early on Saturday morning, the date which would have been our 11th wedding anniversary. Aimee and I made the same hike on our 6th wedding anniversary (June 16, 2007), just over a year after Max was born. I was early enough to miss the crowd (it's a tough hike, but a popular one) and have some alone time with the lake, the trees, the mountains, and my thoughts.

Elliot was not impressed by the lack of oxygen above tree line.

Max, Owen, and I on top of the world. Okay, at least on top of a granite formation on Trail Ridge Road. 

Max and Owen showed me how to scramble on the rocks near a waterfall. Going down was easier than up.

Owen, Elliot (in the stroller), and Max on the lookout for yellow bellied marmots. We always find marmots at the "alpine communities" stop on Trail Ridge Road.

Take care, and happy adventuring.

Yesterday was Father's Day

And I spent it in Colorado with my sons. Owen, Max, and I climbed rocks for a beautiful waterfall view, played our third round of mini golf, and snapped photos of a bull elk outside our cabins.

Pictures forthcoming. I promise.

Many folks have already read the article in yesterday's Lawrence Journal-World, but for those who haven't, here's the link: Lawrence Father Recounts Wife's Eight Year Battle...

Thanks to Karrey Britt and Nick Krug for their professionalism and care in putting Aimee's story together.

My Yearly Crisis, Amplified

Every summer, I go through a period of "existential crisis." Not a big, scary crisis as in "life has no meaning," but a baby one, as in "I no longer have a job to do and feel lost." I'm sure it's a common feeling for many teachers, although most might not choose the term "existential crisis."

Again, I defer to Wikipedia if you're unfamiliar with the phrase "existential crisis." While the wikis have their shortcomings, it is a good source of group think and common knowledge. Let's examine the first line of the entry:

An existential crisis is a stage of development at which an individual questions the very foundations of his or her life: whether his or her life has any meaning, purpose or value.

I'm not very fond of the word "crisis." It sounds too much like "emergency," as in, if you don't resolve this crisis, bad sh*t is going to happen. Soon.  Guess what... Bad sh*t has already happened.

I doubt there is any way to be truly prepared for a loved one's death, especially a spouse. Aimee and I chose not to include a unity candle lighting at our wedding because we both felt the idea of two people becoming one was a bit old-fashioned. Here's what I learned after nearly eleven years of marriage: you will become pretty damned entwined with your partner. If not exactly "one" flesh, the you learn the other's moves before he/she makes them. Losing Aimee has caused a major rift in my thinking about myself and my place in the world--in addition to the pain and grief of her death.

All relationships change over time, regardless of how intimate the relationship. But most changes are gradual, even if at times marked with periods of sudden, but small shifts. A death is a sudden, violent change. Think a football thrown to a receiver--the ball follows a perfect, arcing path to its target, and then a defensive player reaches up to tip the ball, sending it into an awkward, end-over-end spin out of bounds. Or think of what might happen to a planet should another object knock it from its orbit.

I'm out of my orbit. I'm the football tumbling out of bounds. Sure, I have plenty of meaning in my life--right now my boys, especially Owen and Max, need me to be emotionally present. Elliot's needs are fairly simple (although ever-present). Fortunately, he's going to day care during the summer to keep a consistent schedule. The other guys really need me right now.

And that is good--it is as it should be.

But my life, my meaning, is more than father to those boys. I've spent so long as Aimee's friend, lover, partner, and yes, caretaker, that I have to reexamine myself. And by "have to" I mean I have no choice. The change has come, regardless of my wishes, and here I am.

So this year's existential angst (a little more accurate than crisis) brings a good measure of "who am I, now?" with an eye toward the future and "what will my life be like a year from now?"

Baby steps, Aaron. Baby steps.

(Life) Revisions

The morning of Aimee's death, when the sheriff's deputies were asking questions as part of their investigation, I found myself making verbal revisions, shifting from present tense to past tense automatically. I'd say something like: "She wears--wore--these shoes all the time."  My brain had begun the hard work of understanding the world without my sweet, sweet wife.
I stumbled through that awful day with too many verbal revisions. Aimee is gone. Aimee did those things in the past.

At night, after the boys are in bed and when I do most of my private grieving, I sometimes have little breakthroughs. Last week, when thinking about all the things she won't do anymore, I realized I don't have to say "I loved Aimee." This isn't a necessary revision--I still love her in the present tense, just as I still love my father even though he's been gone for nearly 23 years. If grief is the cost of loving, at least love doesn't have an expiration date.

Yesterday was Max's birthday. I struggled; I spilled over with tears and frustration and all sorts of awful heartache after the boys went to bed. I miss Aimee--again in the present tense--and love her dearly. The way I love her has changed, but not the love itself.

And that, even in the blackest moments, keeps me going right now.

...

Another revision I should mention:

The "buzz bomb" from my "Culture Clash" post was actually called an "Overlord". Thanks to Janae for setting the record straight.

It still was less than spectacular. (Sorry, Jason)

Some News, Some Not

I made my first "sale" of the new year on New Year's Day. Considering the lack of material I have in the wild, I'm chalking it up as a "New Year's Miracle". "Jumping In" will appear in Dark Moon's forthcoming charity anthology, Slices of Flesh. The cover art is provided by Mike Mignola of Hellboy fame with Dave Stewart doing the color work. Yes, it's pretty awesome. Check it out at Dark Moon Books. The TOC is stacked with some big names in the industry, too. 

On the home front, Max has a diagnosis. We're currently seeking a second opinion. I believe healthcare, like any personal service, should involve choice. Doctors--while much more knowledgeable about medicine than me--are not experts on my kid. (It makes a parent a tad uncomfortable when the diagnosis changes in a week simply based on an offhand comment made to the doctor... Just sayin'.)

Dead Lands: Pass the Ammunition is coming soon. Like next Monday soon.

Stay tuned.

My Three Sons

First of all, Max is (somewhat) on the mend. Thanks for all the well wishes and positive vibes; I told him he had good vibrations sailing in from around the globe. He smiled. His condition (which involves some rather unpleasant blood where there should be no blood) continues to stymie the doctors, but we did escape the hospital in time for Christmas at home. His spirits are high and energy better than it has been, so I have hope.

With the infant at our house (Elliot continues to be the most chilled-out baby I've ever met), we didn't have to travel this year. Christmas at home was soooooo pleasant.

Owen is winning the best big-brother award this year. The hug Max delivered upon opening Owen's gift was a once in a lifetime moment. Evidently, Lego Hero Factory kits = "I love you to the moon and back, man" in Max's world. 

I'll start on something writing related soon, but for now I'm just circling the nest.

It's a good place to be.

His Name is (Elliot) Robert Polson

And no, I'm not making (too much of) an allusion to Fight Club.

Elliot Robert Polson with big brother Max. 

Elliot was born at 9:03 PM on 12/15/2011 after a crazy day of induced labor, nerve pinching, and cheerleading. The big fella weighed in at 9 lbs, 2 oz and was a neat 21 1/2 inches long.

He's getting reading to join his brothers' club some day.

(Yes, I know Polson and Paulson are spelled differently... Thank you very much.)

Welcome to this wacky family, Elliot!

WIP Wednesday: Monsters Everywhere

What am I working on? Monsters.

They're everywhere.
Max (my three-year-old) is responsible for the monstrous picture. Random scribbles or a child's interpretation of an Old One who visits in the wee hours of the night? You make the call. It creeped me out for some reason.

Speaking of crazy, who is crazy enough to write a short story with the same title as a novel? I am. Read "The House Eaters" at Rose & Thorn Journal. I imagine this is what might happen to Nick and Tabby (brother and sister from the book) in an alternate universe...

...and what's my fetish with the name Maggie lately?

This is What Happens in Summer

Man, take away my structure...and wham...I don't blog for days, I forget to shave...and what's my name?

I'm on point this week with the boys (my wife has an extended contract, and works through Friday). Happy to say I am writing, but fighting my instant lack of structure at the same time.

It happens every summer, and it is a good problem to have.

The best part of time off of the ol' job is more time spent with Thing 1 and Thing 2. Owen is learning to read. Man, how he lit up this morning when he realized (and showed me) that he can read Hop on Pop by Dr. Seuss. I'll have him devouring Lovecraft and Poe in no time.

Speaking of Poe, I have a couple of nonfiction projects rattling around in my head. Both are hybrids of my day job and my love of dark fiction. The first, a collection of Poe stories with teacherly resources, annotations, and other goodies. Sure, teacher's guides and annotated editions exist, but most are too pricey (publishers must think teachers/schools are made of money...wait...they are made with tax money) or just plain lame. Teenagers sniff out lame faster than...well, something really fast.

The second, and this one is a stretch, is a book about teaching horror as a way to reach adolescent non-readers. Most books I can find on the subject approach horror as one would in a graduate level literature class. I'm thinking about a course for at-risk readers with high interest material (good quality stuff, too--not just schlock and gore). Even my most reluctant students perk up at the mention of Poe. You should see the reaction when we read "In the Vault" by H.P. Lovecraft (Cthulhu might be a little over some heads).

So...am I already missing school, or do these ideas have any merit?