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.

Getting Up*

My oldest son competed in his first middle school track meet last night. When I was in high school, we called various members of the team hogs, dogs, and frogs--throwers, runners, and jumpers. Owen decided to try a little bit of everything: shot put, long jump, and the 200 meter dash. So I guess he was a hog-dog-frog... the image is a little terrifying.

This happened during the 200:

Yes, that's my son on the ground. He's fast on the soccer field, but a straight sprint might not be his thing. After the race, he was worried I'd be upset because he didn't perform well. Think about it for a minute, especially those of you who are parents. Would you be upset?

My answer--which came in the form of a question as my answers often do**: What did you do after you fell?

Owen: I got up.

Me: And then?

Owen: I finished the race.

That's all that mattered to me. I felt for him. Going down hard in front of a stand full of parents and your peers is tough, especially in 7th grade. Maybe I broke some parenting rule when I shared this photo, but no, I don't think so. I'm much prouder of a boy who crashes hard and still finishes than one who wins all the time. No one--anywhere/anyone--wins all the time.

Life is more about what you do when the bad shit happens.


*I really, really despise the word "get," but here it feels somehow appropriate. Forgive my lazy verb choice.

**I wonder if it's difficult to have me as a father?

I Broke My Kid

That's how it feels, anyway. Owen has a "buckle fracture" of his ulna in his right forearm resulting from a rather daredevil episode on his bike. Yes, the bike he just learned to ride without training wheels earlier this summer. Yes, I was supervising when said breakage occurred.

I should be fired as a parent.

I had all sorts of fancy blogging planned for today about the "chilling effect" and "free speech" and "self-censorship", but I'm playing Candyland and Chutes and Ladders instead, trying to patch a hole in my wounded self-concept of parenthood.

I'll get to that post, I always do, but for now...in the interest of public safety, I give you:



Be safe people.