and so peacful until...

I'm on day nine of a broken dryer (heats, but doesn't tumble; makes a horrible mouse-squeaky-death sound). We had an appointment today to get it fixed.

At first he said he unplugged it and it's fine. But then he went ahead and checked it, the belt is about the snap and idler (I pinky-promise that's what it was called) was about to go out. He picked up the parts and fixed it.

Then, of course, he discovered  part, that ties into the motor, that just idly spinning, and it's a fire hazard. Seven days to get that part in. Seven days.

Dear dryer, you are not funny. Dear warranty-holder of dryer, as you certain that's the best you could do?

I will be having a date with the laundromat soon. A date, not a double date.

(Toddlers in laundromats are no fun, I've already tried.)

Merrily, Merrily

I'm on my third - no, wait, fourth - cup of coffee.

Tomato season is about over, the boys harvested our garden. Aaron complained about the tomatillos, covered in blooms but no fruit two years in a row.

The boys are home from school, causing a ruckus with Emery. It's loud, gloriously loud. Reminding me the quiet is overrated.

And I Keep Hittin' Repeat-peat-peat-peat-peat-peat

Emery turned two a few weeks ago - two!

If Griffin is my heart, Darwin is my soul, then Emerson is my joy. All of my joy.

Likes:
Pointing, grunting, using very little words. Will sweetly call me, "Mama!" But if he needs something, I quickly become, "MMMMMAAAAAAAA!!!"

Hugging his daddy and brothers when they come home, calling both of his brothers, "Dar!"

Trucks, trains, trucks, helicopters, trucks, airplanes, trucks, automobiles, and trucks.

Chocolate chips, pretzels, rice soaked in chili, and trying to eat everything he's allergic to.

"Petting" the dog. (Where "petting" is really "licking" and ewww.)

Helping with laundry, playing with mama's straight pins. 

Sneaking out the back door.

Slamming doors.

Dislikes:

Fingers pinched in slammed doors.

Being told anything along the lines of no, hands off, and not for you.

Being asked to talk.

Naps.

Sleeping.

I really cannot being to put into words how utterly fantastic you are Emery, happy birthday my little love.

PS. Please start talking and sleeping soon.

Hell, I Still Love You, New York

Summer is over, and for the first time it's bittersweet.

Griffin and Darwin returned to school today (fifth and third grade, someone please explain to me how that happened), and my summer travel is over.

Aaron? Well, let's just say that poor boy has put in a lot of hours and flew out on an emergency trip Saturday afternoon. Sigh.

I've been home just over a week, and New York was... pretty much what I expected.

Big.

Loud.

Busy.

I didn't expend it to zap all my youthfulness and age me quickly, but when there's a song about a New York Minute, heh - they weren't kidding.

The BlogHer Conference was held at 6th and 53rd...

... and although the majority of my time was spent in the hotel at the conference, I did manage to sneak away to see Times Square at night...

... take a subway down to Ground Zero (but didn't realize we needed tickets into the memorial)...

 ... so we visited St. Paul's Chapel ....

... and took a cab to babycakes in Chinatown...

But yes, I was gluten'd by the hotel we were at, it was not awesome. Luckily I figured it out rather quickly and took necessary steps to avoid going to the ER.

It's a special type of talent to gluten someone with a bowl of fresh fruit.

My "find me gluten free" app worked fantastically, and I was kept alive by Naked Pizza...

and  Lili's 57...

New York is a bit of a dirty mistress for me: lights, glamour, excitement, but there's no way I can keep up with that crazy bitch.  

So Bless My Heart, and Bless Yours Too

I feel that parenting is a bit like gardening.

You go into with the best of intentions. You think you know what you are getting yourself into, and you dive in.

Then, after a bit, you look around and wondering what the hell you got  yourself into. Are you doing it right? Are you giving too much, too little? Surprises come up, you ask the best experts you know, you change what you are doing and hope for the very best.

Last week, while attending the BlogHer'12 Conference in NYC (more on that trip on another day), I got a call from the local children's hospital - we've been expecting Emerson's recent scope results for his eosinophilic esophagitis.

I took the call, ducking out of the iphonography session, to speak to the nurse.

His eosinophilic cells more than quintupled.

There's simply no other way to put it: I feel fucked.

He's already avoiding all the foods he's allergic to, still taking his god-awfully-expensive special formula. And the numbers took a massive jump, what the hell?

After going through all his records (in the hallway, where I barely had reception) and discussing his behaviors (still wakes up at least three times a night, screaming bloody murder plus a whole gamut of other stuff, like refusing to talk even tho he can, punk), the nurse let me go so she could talk to the doctor.

Later that evening, she called back letting me know that the doctor didn't want Emery to have any food for the next three-or-so weeks (just special formula), until we came in for an office appointment.

Hahahaha, yeah, right.

This after nearly a year of hissy fights and fights and stop chipmunking your food in your cheek and swallow and here, try this and mmmmmm, doesn't that taste good she wants us to cold-turkey him off food?

Again. Fucked.

Tomorrow I need to call them back, because this whole don't feed the child anything business simply isn't working - his face is breaking out, he's screaming, miserable, and constantly signing for "more chocolate chips."

This whole parenting thing isn't easy. Neither is gardening, really.

But sometimes you get to step back, take a look and realize: you're doing best job you can - and look! Everything is blooming.

You Light Up My World Like Nobody Else

Someone around here turned eight.

He is tenderhearted and awesome. Outgoing and shy. Brave and cautious. And promises to live with me forever.

I'm a lucky girl.

As We Sit Alone I Know Someday We Must Go

I believe that people do what they think is best... love the best they can.

I didn't have a spectacular relationship with my grandma. She didn't tech me to sew. Or cook, or garden. We didn't take nature walks, didn't play dress up. At most, she'd hand me a discarded pile of used copy paper and a tin box of blunt crayons.

She did share her secret stash of chocolate chip ice milk, still perfectly squared in a specially-designed tupperwear ice cream container.

And she did have the priest re-bless me every time I stepped foot in her Catholic Church.

My grandma passed away last week, and we buried her on Tuesday. It's been a roller coast of emotions: happy she lived a long life able to watch her nine children and 21 grandchildren grow; heartbroken that she (and I) lost my mom at such a very young age (I was four, my mom 28); sad to be reminded, in pictures, of what an awesome person my grandfather was.

And I'm... mourning. Mourning what was, what could have been; how it all could have played out so drastically different. And I'm not dumb, I know looking at me was painful - oh, so painful - for her, to see her daughter in me and not have her around. No parent should ever experience the loss of a child.

Maybe. How I've hung so many of my life experiences and broken relationships on that little wishful word.

Despite how much I wish everything could have been different, I'm grateful for the time I got to spend with my grandma in this short, short lifetime.

There Are Certain Things That Should Be Left

It's taken half a year, but I'm finally released. 

Released from doctors, surgeries, procedures, lab tests, emergency room visits. Sadly, these are all the memories I have this year. When did my irises bloom? I haven't a thought, but I've met a lot of excellent nurses who can put an IV in my armpit like no one's business.

The surgery to correct my sphincter of oddi in March fixed me enough so that I could eat, but not enough to be out of constant pain. The doctors explained it was my pancreas (that they should have, but were unable to, put a stint in during the procedure) and thought we should wait until September to revisit it. Aaron insisted they handle it immediately, and thank goodness.

In late May I had another procedure, supposedly 30 minutes to put a small stint in my pancreatic duct, which turned into a four hour surgery to reroute and correct pancreas divisum that was so severe, the doctors seriously doubt the scar tissue on my pancreas will ever heal.

So. There you go. If there's a 25% chance of something happening, it won't. But if there's a less than 1% chance, I'm your gal. 

Except for lottery tickets. RIDDLE ME THAT.

 So now, we're done. The stint had to be removed (because I wasn't in the 95% of people that just have the damn thing fall out naturally) and we're over two weeks out. I can start an exercise routine (I've been pushing the stroller around the block the past few evenings - my legs and shoulders hurt), I can go be out in the world and not worry about crazy stabbing kill me now pains (unless I'm gluten'd), and I can just go be.

Which is fucking fantastic.

So now I'm watering plants and children. Enjoying the sunshine. Trying to figure out what the hell happened to my garden. Not lying in bed all day.

I really can't describe how fucking fantastic it all is.

She Loves A Lot of Things

Griffin's school play is tonight, and he's all out of sorts because I didn't get him a white shirt and black suspenders. One would tend to think that a white shirt and black suspenders wouldn't be so difficult to attain, but after a month of looking I simply refuse to pay full retail for a white shirt and black suspenders for a one-day, two-run school performance and never be used again.

I told him he can make do with a shirt from the closet and thrifted suspenders. It will be fine. Really, it will.

He wasn't so convinced.

The first performance was during the school day, and he was all smiles at pick-up. 

"Mama, my suspenders are snazzy."

Yeah, You Buckle with the Weight of the Words

At this point in my life, I should be able to recognize that my own manic behavior is a sign something is going to happen... but, no. That is a lesson I have not yet learned.

I certainly hope I learn it soon.

Yes, it has been awhile. No, it wasn't intentional. But I'm tongue-tied and twisted. I feel it needs to be said, but I don't know how to say it.

After I stayed up late, manically trying to write my last post, I went to bed. Two hours later I was up, Aaron called 911 and the medics who came to our home thought I was having a heart attack.

Nothing says welcome to thirty-five like medics telling you are you having a heart attack (even if you don't believe them).

Five days later I was discharged from the hospital with a diagnosis of an acute pancreatitis with elevated liver enzymes. No explanations why this happened - in fact, every reason why this could have happened was ruled out for me: I don't drink (especially since having my gallbladder removed), I don't smoke; my cholesterol and triglycerides were on the low-end of normal. The hospital did every scan possible to try and find a rogue gallstone blocking something - nothing (but I was told that I "won the award" for holding my breath the longest and best in the CAT scan). I was discharged to "resume my normal life" and "cross your fingers it doesn't happen again."

Two days later I was at urgent care with a fever a chills, more tests ran. I was put on a liquid diet.

Three nights later I experienced another "attack" but since I knew what it was, I took a pain pill and went to the doctor the next morning. More tests were ran.

The next day I was told to "urgently" see the GI that was over my care while I was in the hospital. I got an appointment to see her the next day.

She looked at my hospital tests and all the test ran since my discharged. She had an idea of what was wrong: I had sphincter of oddi dysfunction.

We had never heard of it. Only two doctors in Kansas City work with patients with this, and the wait lists are months long. And more tests have to be ran to rule out other diagnoses.

To get from there to here was a long road. Many test. Many ER visits. Nineteen days of a liquid diet followed by 25 days of a clear liquid diet. Threats of hospital admission or an in-home health aid to administer IV bags. Thanks to friends on Twitter and Facebook, my wait was cut shorter to get in to the specialist, but over 40 days of being on an exclusive liquid diet messes with your brain, with your organs. Yes, I lost 40 pounds in less than a month. No, I would not recommend it.

The sphincter of oddi is a tiny, one millimeter in diameter sphincter and muscle. When you eat, the food travels from your stomach to the digestive tract. The sphincter of oddi opens and allows the digestive enzymes from your liver and pancreas (and gallbladder, if you still have yours) to travel to your digestive tract and the enzymes help digest your food.

For a person with sphincter of oddi dysfunction, the sphincter does not open. Instead, it closes tightly and spasms which signals to the liver, pancreas, and gallbladder to release the enzymes - typcially into other organs and your blood stream.

When we finally got to my surgery day, they were unable to complete everything that needs to be done (which likely means more surgeries - yes, plural - this year); when they did a pressurized test of my sphincter of oddi, they said they would cut it open if it registered a pressure over 40.

Mine registered a pressure of 170.

The surgeon told my husband, "No wonder she couldn't eat."

Yeah.

So, no I'm not 100%. And that's ok. I'm slowly getting there. I can eat breakfast. And a decent lunch. And sometimes a snack. But no, my pancreas and liver are "still mad" and we're still figuring things out.

Aaron took four weeks off of work using FMLA leave to take care of me and run the household. This will be able to cover any additional hospital visits (goodness, I hope not) and potential surgeries for the rest of the year.

Life doesn't stop, even when it feels like you are 20 feet under water and struggling to survive.

Griffin turned ten...


Darwin continues to be Darwin...


Emerson continues to grow and has hit full-fledged "toddlermonster"...


I swear, that's the stink-eye of a teenager right there.

And spring has come to Kansas...


... even if it means I'm tempted to get a chain saw and destroy every last blooming oak tree in the city.

I've missed this space. As much as I don't want it to medical diary, it is what it is.

And it will be what it will be.

I'm hoping to find the happiness along the way.