Wednesday, December 30, 2015

"helper"


One of these kids begged me to take her to the roller rink today. 
Since Punk had no plans for the day, after a check-in dr. appointment for Rico the guys hung out at the house, while I took the girls out for a spin. 

I grew up at the roller rinks in California. I'm one of those adults that can still skate backwards, and cruises around much faster than I probably should. So when Yoda asked if we could get out of the house and go to the roller rink, I was all over it. (After two attempts in the sixth grade Punk swore off roller rinks forever, but Kooka was game to go again.)

Yoda was pretty stoked, because she remembered from last time, that there were "skate helpers". 


Skate helpers. Ever seen one? These things sound like a great idea, like the perfect way to give your kid the independence they need to learn to skate. 
If independence looks like a terrified koala on 19 wheels navigating it's way through a New York City traffic jam, then yeah, I guess it gives your kid "independence."

See that frowny face at the top? That's what one lap with a skate helper will do to you.

You ever help an old lady using a walker across the street? How about an old lady whose walker is balanced on a set of roller blades? What about on old lady with a roller blade walker, on a sheet of oiled glass, while wearing shoes made of raw bacon? Yeah - it was sort of like that. Add to the fact that my protégé's center of gravity is two feet lower than mine, and you have the recipie for blown spinal discs.

As Yoda navigated her way around the skate floor, I was forced to crouch behind her like a hunch-backed giraffe with osteoporosis. The three minutes it took us to get around just once was excruciating. Kooka will be the first to admit that she didn't start out much better. "I might have taken out four small children on that first lap," she said. But blessedly, she never asked me to follow her around with my hands in her armpits at .05 miles per hour.


Two hours was enough for all three of us, so we headed home to the guys. 

Rico was really excited to crack open a welcome home gift from "Ick and Ruff" - chosen family from Rico's childhood days. It was a crate filled with New York bagels, lox, pastrami, cream cheese, smoked salmon, some Italian cookies and a cinnamon twisty thing that he insisted we were all pronouncing wrong. We probably are, but watching him make fun of us is the most fun we've had all week - skate helper included.


Health update: a few test results have come back negative, a couple of hepatitis results (they are continuing to test for less common strains) and something that you can only contract by petting a rabid wildcat in a Siberian snowstorm. The fevers continue. So does the fatigue. We'll keep hunting, and we appreciate all of the tips and leads you send us.





Sunday, December 27, 2015

I'm sorry for the lack of real updates. 

The things I want to be able to write aren't true, and the things that are true I don't want to write.

He walked about 50 yards with a walker today. But he can't shake the 102 fever so he climbed right back into bed. 

I wish there was more I could say, but I guess I don't really know how to be this person. I don't know how to make this sound like there is light at the end of the tunnel whe it feels like the hole just keeps getting deeper and deeper.

Saturday, December 26, 2015

grateful

It would be pretty easy to fall into a pit of despair right now. But the truth is, we are lucky. And in case we have trouble remembering it, I'm leaving this list right here.

We are grateful
 - for doctors and nurses and people who keep searching.
- for the 17 pills Rico takes each day to help him.
- for the neighbors who bring us pots of turkey chili, and fruit, and bread, for the ones who take our kids Christmas shopping, offer to play with Yoda, send us texts to say, "please don't respond unless you need us, but if you do, we're here."
- for the relatives that drive from Wisconsin and offer to do our laundry.
- for snuggly blankets.
- for public school, and the teachers who know our family and our children and give them love and support when their lives seem uncertain and chaotic.
- for funny notes and texts and pictures from everyone to keep Rico's spirits up.
- for our family - born and chosen, who keep giving unconditional support from afar.
- for kids who keep traditions alive and keep the house running when we can't.
- for mochas and tea.
- for the squishy couch we bought in October, never realizing how much we'd be needing it.
- for just a little snow - and the neighbors who shoveled it.
- for Gram, who laid in bed and said, "You guys better take that walker," even when we told her it was ridiculous. "You say that now," she said, "But Rico's gonna need it, and mine is like a limousine."
- for all of your prayers.
- for our kids' friends who love them and watch movies with them, and hug them and keep them sane.
- for Christmas at home - well, except for the part in the ER.
- for the security team at the Children's hospital who made sure Yoda and I were safe during a code green.
- for tips and insight and all of the weird possibilities you guys send us - we need all of the help we can get.
- for a snug, warm home to be together.
- for this being the year that I decided to make an attempt to chill out and meditate and quit caffeine
- for the homemade soaps Kooka gave us for Christmas.
- for the drawing of our family from Punk.
- for those friends that can come into your house and don't feel slighted when you totally ignore them to go take a shower while they entertain your five year old and let the dog out.
- for Ativan - not gonna lie, quite thankful for Ativan.
- for love - we feel surrounded by it, and are so grateful for all of you.

Friday, December 25, 2015

tired

Getting real tired of your $#!+ 2015.

Spent our first Christmas in the ER. Yoda woke up in the middle of night with stomach pains, the day just kept getting better after that - fever, vomitting, lots of good Christmas cheer.

Reluctantly, we left Rico home and headed to the Children's hospital. Punk and Kooka were already in Wisconsin. Yoda's going home with some Zolfran, Amoxicillin, and a nasty case of strep.

Happy holidays. Let the good times roll.

Thursday, December 24, 2015

merry christmas

It's Christmas Eve.

At out house this is the big kahuna. There is church  and candles and presents and games and games.

Today is a little different.

"I'm not better," are the first words he says this morning. We know it is true, but we keep hoping. His low grade fever is climbing, the sweats keep coming, but for now he is snuggled on the couch and knows that we love him. Today we are grateful for each other, we are grateful for our neighbors who check in on us, bring us fruit and say things like "no need to respond to this text - just let us know if we can help."

Today the little things seem huge and holding his hand is the best gift of all.


Wednesday, December 23, 2015

home

There are some things worth staying up past your bedtime for. Having your daddy home for Christmas is one of them.

He can't leave the house - he can't even leave the room - but he's here, and he's not in pain and we get to love him as much as he can stand. He'll go back to meet with doctors on Monday. There is still so much to figure out.

All the kids have been wonderful this week, but Kooka has been a regular elf. She has made our home feel like Christmas this week. She made Christmas cheeseballs all by herself, cookies too. She's wrapped presents, read stories, helped with homework and never forgets to turn on the Christmas lights.

We'll keep the updates coming, but for now, we are just hoping for a peaceful night.

grrrrrrrrrr

Today we spoke with the head of Rico's medical team.

We don't even know what to feel. 

On one hand she says that the all x-rays look clear, and nephrology looks good, as does his oxygen level. His blood pressure is relatively stable and he is able to eat and drink.

On the other hand she says, that since he is not in immediate cardiac or respiratory distress, that she cannot keep him here. We would normally take that as a step in the right direction. But then she continues, "Many malignancies present this way, and we are still waiting for results of your histo plasma antigen work up, as well as 15 other tests. In short, you are in a precarious situation, I strongly contend that there is something very wrong with you, but I cannot keep you here."

So for today, we will take him home, wrap him in love and continue the good fight. It's not exactly the Christmas miracle we'd hoped for, but we'll take it.




Tuesday, December 22, 2015

waiting


There are still no answers.

There are symptoms, and they are able to be somewhat treated, but there are no causes, so reasons, no real relief for him.

There is oxycodone for pain. Four medications for blood pressure. Occupational therapy for his arms. A walker for his legs.

He was healthy three months ago. He was body surfing with dolphins and stand-up paddleboarding, he was running bases with neighborhood kids in the park. How does this happen?

The nephrologists are the specialists - they deal in blood pressure, quirks and kinks in that system, and they've said there is no reason for it. So we just keep waiting.





sorry

Today there is another chest x-ray. Maybe PT will come in and see if they can get him to walk a bit. Yesterday there were some balance issues, today there is weakness in all of his limbs. They're running blood cultures for rare diseases - things carries by rabbits and ticks and goats that live in swamps.

For the first morning ever I am not with him. Yoda is being presented with an award in front of the whole school. Rico and I talked about it, and decided that I should be here this afternoon. We'll see what the evening holds.

I can't believe that this has been less than a week. In so many ways it seems like a lifetime ago. I know I look like a stoner. I walk into Target and my eyes are completely glazed over. I'm not even sure why I am there except that we are out of goldfish crackers and I am trying to maintain some semblance of normalcy in our house. I'm sorry if I don't look at you. If I do I will cry.

I cry every time I walk into his room. I cry every time I leave.  I don't think they are tears of fear. I'm not sure what they are. I just know that when they fall down my face the only feeling in my heart is love, and how right now I just can't seem to love him enough.

Monday, December 21, 2015

Everything





"Whatever comes our way - oh we'll see it through, and you know that's what our love can do."

questions

I wish I were exaggerating about the room.
But I'm not.

I'm also not exaggerating about how many questions the infectious disease people ask.

We go over the usual questions- viruses, travel overseas, IV drug use.

When that doesn't work we move on: kitchen renovation? the house flooding last year? the 4,500 ticks that held congress on Rico's raspberry bush? pets? neighbors with pets? neighbors' pets who might be overly promiscuous? suspicious birds who might be cooking meth in the maple tree outside of our window? do we know any storm troopers? are we familiar with the cruciatis curse?

And then there is this question: Any contact with animals, or anything that might be considered out of the ordinary?

There is no way.
No answer to this.

Of course things have been out of the ordinary. That's one of the reasons we love each other - everything is out of the ordinary. We planned it that way. Rico just looks at me, so I start, "Everything?"

"Let's start with animals - everything you can remember."

"Ok, well we have this kinda Dr. Doolittle thing. We're not really afraid of much,"

"OK."

"Well, there's the dog, he's vaccinated.
A warren of bunnies that we nursed this summer.
A baby turtle we found.
A whole crap ton of parameciums and stuff that he waded into the pond to get, so that Mr. Tickles could have a comfy place to swim.
All of the mosquitoes in Mississippi.
A couple of mice.
Two pigs.
This herd of free-range goats we found living in an abandoned movie set on an island in an Alabama swamp.
A sea anemone.
Eight monarch eggs.
Eight monarch caterprillars.
Eight monarch butterflies.
A few horses.
A donkey that bites.
A starfish we found in the Gulf of Mexico.
Sand fleas.
Something we think might have been a giant jellyfish, but we only touched the top of it.
Ladybugs. Approximately 2,435,270 ladybugs.
Four stray dogs that we chased and returned to their owners.
A pack of Kentucky lorikeets.
Dust mites - we can't see them, but we know they're there.
Three chickens. But if nuggets count it's more like sixteen chickens.
A few toads.
A bullfrog - we think it was a bullfrog - we argued about it for a while.
Some stingrays.
A peacock.
A bunch of those blind crickets that you only find in caves in Tennessee.
Forty-two random spiders.
However many bats happen to live in the Mammoth cave system
Annnnnd all of the questionable organisms living in a sketchy restroom in a Missouri McStop."

The poor lady is scribbling furiously, she can barely keep up.  "Any snakes?"

"God no! We're not crazy. There were definitely NO snakes!"

What the hell they are going to do with this information is anyone's guess.
Right now our biggest fear is that they will come back with nothing - that life will just keep being scarier than snakes.




not cool

I don't care what anybody says. This place is depressing. 

Yeah, there's a brightly lit atrium, with a grand piano, there are courtyards all over the place, there's a caribou across the street, none of which matters much to a guy who - on a good day - is allowed to sit in a chair for five minutes.

They moved him today. He was originally placed in a surgical ICU ward, which even the nurses admit is a bit of a catch-all spot for critical patients when no other rooms are available. He is not a surgical patient and not recovering in the same manner, so they've moved him.

It's not better.

His new room was likely built in the late 1920's. I can hear the chorus of hipsters from here; "Oh my god, state-of the art is sooooooo mainstream, at least your room has character." 

And it does. I mean, it's cool if you like stuff like haunted prisons, no running water and windows that are painted shut. It creeps me out. And I'm not the only one. "What the hell," were the first words from Rico's lips. "This place needs a serious reno," were his second.

Infectious disease comes in today, then maybe physical therapy to see if he can walk. I think if he had the option he'd run.


Sunday, December 20, 2015

Chosen

My friend Christina lives minutes from Mayo. She stopped to see us today and I was reminded of what she always says, "friends are our chosen family."

We've chosen so well.

Our chosen family is the backbone of our home right now. They are the ones keeping our kids, making sure they eat, picking them up, dropping them off, walking the dog, leaving encouraging notes, offering to fill in the gaps, remembering that the only soda I ever drink is "brown with ice", bringing us care packages full of Advil and cookies and carrots and celery. 

We have felt so completely surrounded by kindness and love, and we are so so grateful for all of you. (Yeah you-if you're reading this we know you're with us in spirit, and we are so, so lucky.)

somebody

The thing about hospitals is this - no matter how much coconut cream pie they serve in the cafeteria, no matter how many rainbow windows they have, or even how many anesthesiologists they have working on a Sunday - the fact remains:

Nobody wants to be there.

It's not like people are sitting in bed tonight going, "Hey, Mary, I've been looking at some brochures. Where should we take the kids for Christmas? Aspen? Cancun? Med Surg Unit at Mayo?"

I've mentioned before how many wonderful people work there - we are lucky to know a few, but still - it's a hospital - it's not anybody's ideal.

And as wonderful as people are, as highly regarded as any place might be, I have spent enough time in hospitals to say this much: If you ever find yourself in that bed, you better damn straight have somebody who loves you in that room with you. Nothing is foolproof. Hell - there's even an official sign in each ICU room that says so.  Something like: "Hey fam, let's be real - you know this guy wayyyyyy better than we ever will - help us make a $#!++y situation less $#!++y. Pull up the covers, give him a back rub, cut up his food, refresh his water  - we're all in this together."

When somebody forgets to turn the pressure cuffs back on (and they will) your "somebody" can flip the switch or stick their head into the hall and ask for instructions faster than your nurse can get there.

When you need a drink of water and your nurse is busy attending to a code blue down the hall, your "somebody" can ditch into the dietary room and get ice water.

When alarms are going off like crazy in your room for ten minutes and you think you might be the next code blue, your "somebody" can look at your monitors, take the remote control out of your hand and reposition that little oxygen reader on your finger.

When four nurses have been in and out over the past six hours but nobody has noticed that your IV hand looks like a grapefruit with five little smokies growing from it, your "somebody"will check your extremities and grab whomever happens to be walking past your room and ask them to remove the IV that has fallen out of your vein and threatens to explode your favorite set of fingers.

Your "somebody" can straighten your pillow as many times as you want.

Your somebody can hold your hand all night, even when the nurses say "you can't sleep in here." They'll just bring a book into the room and pretend to be reading all night.

Your "somebody" loves you best of all.

Right now - Rico's "somebody" is home - and not happy about it. Though it will feel good to sleep in a bed, hug my kids, eat some grapes from my own fridge - it's the little things.  I'll be back tomorrow - and he better damn well have both of his hands.




unicorns and fish

Seriously unicorn night light?! This is not the night for you to go on the fritz. You and Daddy are the two things that stop tigers from breaking into our house in the middle of the night and carrying us to Colorado.

Oh - and beta fish that's suddenly all lethargic and refusing to eat - throw the kid a bone - she's got enough on her plate.

what we know

What we know is a whole lot of nothing. 

They have been able to drop his blood pressure with IV meds, so he is able to talk more, sit up, and watch TV for the first time today. He smiles and talks to people who come into the room. He's hungry for the first time in days. Those are the good things.

The less good thing is that they are still looking for a needle in a haystack. 

I am sort of appalled that they don't have to explain much to me in here.  At this point I have actually spent about a a full month of the year sleeping next to someone in a hospital room. Nobody needs to explain why they give dilaudid or what nephrology does. We know why they are giving heparin and why the pressure cuffs are on his legs. We've heard the word "pheochromocytomas" so many times that even I could tell you how it's found, that it's benign, treatable, and that it's also not likely to be causing his issues right now. I'm not appalled that I've spent this much time in a hospital, I'm appalled that my dancer brain has somehow managed to soak in all of this bio-medical information.

Today has been spent meeting with interns, reviewing radiology, more ultra-sounds and titrating medication, to hopefully get some oral meds to work. Punk's godmother, and one of my favorite people in the world, stopped to see us. She's an RN in the pediatric ICU here, and came bearing snacks, stuff to color and a "brown soda with ice."

There are pages of health history to fill out, clipboards full of questions, but we get through it. It is tough to find quiet space to concentrate. Even the quiet places are filled with intense conversations, hushed telephone calls, the constant beeps of somebody's something.

His pain seems to be more manageable today, and the blood pressure is high, but stable (as long as he's laying down), and he smiles a bit more. He is still Rico. He still gets pissed when the doctor and interns congregate outside his door to talk about him. They invite me out to listen. They are not keeping anything from him, there are just so many of them, so much equipment, so many questions, there is more room in the hall.

The two most discouraging things he's heard today are:
1) He needs to cut back. He is not a cut-backer - it is part of his Rico-ness to never want to cut-back. We are still not sure what this means exactly, but we'll figure it out.
2) At this point, in the absence of any other findings, his doctor is predicting that this could very well be a case of essential malignant hypertension. Which in a nutshell means: welcome to your new normal. 

In this case, malignant does not mean "cancer" it just means that it causes some very bad things to happen to your body. The "essential" part means, it is always there - it just is.  If they are right, they can theoretically control the blood pressure with medication. But still, it sounds like juggling chainsaws.

Chainsaws that are on fire.

Chainsaws that are on fire over a pile of sleeping kittens.

What they say is: "We are keeping you safe. You will be in ICU for a couple more days at least. If we do not find a cause for this we have to control your symptoms and we are confident we can help you do that."

What it feels like is: Well, this sucks, but we're pretty sure these Flintstones vitamins will do the trick. Buy some incense and try not to stroke out.

Clearly he is in good hands, but after three months, some answers would feel pretty good.  He sends his love and really appreciates all of the good mojo you guys are sending his way.








Saturday, December 19, 2015

Keep on

The good news is that there is some good news.
There does not seem to be any end stage organ damage due to what's been going on. It's also good to hear that the Doctor here says that the local hospital was spot on and doing the exact same things we'll be doing here. 
The less good news is that we still know nothing.
We just keep on.

Mayo

Mayo.

This is where we wanted to be all along, but now that we are here, it doesn't feel much better.

He is still in ICU - a cardiology ward. The new lines they put in make his blood pressure go up, and he doesn't say much at all. There is a new drug to try, but he seems to resist almost everything. It works a little - at this point 182 seems like a victory.

I do know that some of the kindest, hardest working people I know are nurses at this hospital. It's comforting, but not as comforting as watching Shark Tank with my head on his shoulder.

mayo

I stop home to pick up suitcases and take Yoda to her godparents house. But there is no time.

I get back to the car and she says, "people keep calling you."

"People" at the hospital.

The ambulance is on it's way. I drop her at he neighbors house - thank god for them - and rush back to the hospital. He asks me to follow the ambulance - but I can't, I need to say goodbye to Yoda, to make sure she is OK before we leave. He tells me to go, to hurry - but be safe.

Then he says - not once, but three times to open a Christmas present when I get home, "Please," he says. "you will love it."

My tears just keep falling and I kiss him again and tell him it will all be OK. He is heading to Mayo.

News

At least there is some good news. After much back and forth, the social worker at Mayo called us back. We are hoping to get him in as soon as we can.

Yoda and I are hanging out at the hospital. She's developed a taste for their pancakes.

Friday, December 18, 2015

facts

OK - I'm sorry.
I did tell people that I would post some updates here, so perhaps I should stop treating this like my personal dumping ground for a minute.

Here are the facts:

His blood pressure is still in the 170-180 range unless he stands up then it's back to 190-200. He is taking oral medication now, and is still suffering from extreme headaches. There is some edema in his hands and feet - but the nurses say it's less than they have after a night shift, so he's ok in that regard.

For the first time in three days he was able to eat - some grilled chicken and angel food cake.

He is exhausted. His poor body is working so hard, he is always tired.

I will update more when I can. Sorry for the impersonal format - but he is quite popular and running his fan club is a full-time gig.

Thanks for all of your love.


rico - there are a million




shirt

He always leaves a shirt on the bed.

But not this time.

When he has to leave - when we have to be apart, he takes one of his favorite t-shirts, sprays it with his cologne and leaves it on my pillow so I can sleep with him at night. It has been like that for over 7 years.

There is no t-shirt right now. There wasn't time.

So I just hold his pillow and pray.

elixir

We've seen better years.

In January, when Gram spent ten days saying goodbye to us in hospice, I was certain that it was the most broken my heart would feel for a very long time.

In August, when our baby had two weeks of hospitalizations, I was positive that I had never been so helpless.

In September, when all of my kids left for school - when it was clear that all of them were becoming independent, I was sure my life would never be the same.

But this . . . this one is breaking my soul.

I'm not sure which parts are the hardest: the big kids asking what exactly "brain damage" entails; Yoda praying every night that her daddy is home for Christmas; having to leave him alone in that bed, when he says, "you are the only thing that makes me feel safe";  sneaking downstairs at night just to sit in his office - just to feel him, to be in his space - to soak in every piece of him I can; to see his coffee pot empty in the morning; to hear him talk to me in words that don't quite make sense, and see the fear in his eyes when he says, "I didn't mean that - those aren't the right words, I'm just really . . . "

Really what - we don't know. Nobody knows.

The doctors tell us he is critical but stable as long as he is medicated and laying down. But he is not OK and nobody is telling us that he will be. But we are all in agreement that we should move him - that a new set of eyes, a new set of ears may find a glimmer of something - an "x-marks-the-spot" - a place to start digging.

God I love him.

If love were the elixir he'd be Hercules.

The fear in Yoda's eyes is familiar. They are my five-year-old eyes. When somebody tells you your parent is very sick, when you don't know if you'll get a bedtime story or who's house you'll be at for dinner, when you say, "It's OK, we will take our stockings and tree to the hospital at Christmas. As long as we can be with Daddy it will be OK,"  when those things happen, your world cracks just a little bit.

Our world is cracking a little bit. We are holding it together - we will be OK. I will be with him every minute I can be, I will advocate for him, bring him ginger lotion, goad him into eating just a bite or two more, never-ever leave him without kissing his lips and telling him he is the most beautiful part of my life. The kids will step up. Punk will finish behind-the-wheel and try to get his license, Kooka will do an extra load of laundry, Yoda will draw pictures for his room and read him stories by his bed. He will let go of things he can't control, he will let us love him.

But until he walks back in this house and says "Hey baby I'm home," none of us will be the same.

Thursday, December 17, 2015

He cannot be this sick. It cannot be like this.

I truly cannot count the amount of drugs they pumped into him today. I cannot count the tears.

I don't have words for how it feels to leave him in that little bed, connected to tubes and monitors.

The only words I have are his, the ones he used to say when we had to be apart:

"There is no love like this. No love like this."

He is right.

I am not whole without him sleeping in my arms.

Wednesday, December 16, 2015

name game

(This story comes with the disclaimer that OF COURSE my youngest child's given name is not Yoda. I needed to clear that up before I went any further, because well, if it were Yoda, we might have seen this coming - but it's not, so read on):

Yoda comes home from school today and says this, "Travenyon laughs whenever anybody says my name. It makes me feel bad."

Kooka and I both stare at her for a minute. "Let me get this straight, " I ask, "Tra-ven-yon is making fun of Yo-da?"

Her brown eyes are serious and sad as she nods her head.

Yoda's name can be traced back to ancient Greece, Denmark, Russia - it was the most popular name in Slovenia the year she was born. Granted, you're not gonna find it on a toothbrush or a keychain at the Disney store, but, hey Travenyon it's not like I have to look in a medical journal or a 16th century cookbook to find it - it exists, it's a real name.

She is like the youngest kid in the whole school, the tiniest kid in her class. She's painfully shy, she doesn't need this crap. What I really want to say is, "Tell him you have a big brother the size of three Travenyons!" No need to mention said big brother is as fierce as a luna moth - we'll leave that part a surprise.

But I don't say that. Instead I say, "Well it sounds to me like maybe Travenyon hasn't quite learned how to be a good friend yet."

She tips her little pigtails to the side and scrunches up her mouth. "What do you mean?"

"Well, some kids need to go to school to learn how to read, some kids need to learn math, some kids need to learn how to follow rules, some kids need to learn how to be a good friend, and maybe he is still trying to learn that part."

"He is not trying very hard. It makes me sad when he laughs at me every day."

"Yes. It sounds like he needs some more practice."

"But I think is an alternate possibility," she says. (She might be the youngest kid in the school, but she's two grades ahead in reading). "It is possible," she says, "that Travenyon is a just mean person - like those kids on Charlie and the Chocolate Factory."

Damn.
I was actually hoping she could hang on to the whole "Life is great, everybody's got potential" thing until at least the second grade.

I look at her, open my mouth to respond, but shorty ain't hearin' it. She shakes her head and says "bad nut."

Thanks Johnny Depp.

Tuesday, December 15, 2015

a little help

Sometimes it's hard to ask for help - at least it is for me.
It's even harder, when you don't know what kind of help you need.

It is sort of like that with us right now.
One of us is chronically ill.
Undiagnosably ill.
It feels like if we just had a name for the dragon we could slay it - but there is no name.

Right now it is three months of fevers and headaches and night sweats and weak limbs and fatigue. No specialist can name it, let alone cure it - and there have been several.

So if you know a dragon that sounds like that, and you have a name for it - please share it with us. We'll take all of the help we can get right now.

Thursday, December 10, 2015

movie star material

So, they are shooting a Hallmark/Lifetime movie in our town - and let's just say this:

About.
Damn.
Time.

This little city is almost disgustingly adorable. I'm surprised they don't shoot every Hallmark movie here - seriously, it's that cute.

So anyway, as I was teaching this evening, and they big kids were starting their second weekend of a play they're both in, Rico decides to take Yoda downtown to the winter festival.

Our city has this (also adorable) annual event, where they cordon off the streets downtown, light luminaries, bring in reindeer and a sleigh, give away free cocoa, the choirs carol - you get the picture. Obviously, Hallmark wasn't gonna miss this opportunity - why pay to rent reindeer and carolers, when somebody else has taken the initiative?

I'm teaching class when I get a text from Rico. The producers have asked for Yoda to be in a few of their shots with the reindeer. He signs the release. He tells me they are shooting a lot of footage. "They might not even use it," he says.

Oh they will.
They will.

Wanna know why?
Because her father let her dress herself.

When my 5 year old, makes her screen debut, she will be wearing: one pair of dirty pink snow boots, an equally distressed pair of ballet tights, a silvery leotard, one poofy purple skirt with trim I am not allowed to sew back on, because she likes to hold it when she feels shy, a black hoodie, and a giant red bow in her hair which must be placed on her head backwards and to the side, because "it look stupid any other way." Combed hair - fuhgeddaboutit - it's like half Amy Winehouse, half "does this kid even have parents?"

Oh, and let's not even take into consideration the sweet sweet irony of my two older children (who would ride those reindeer bareback across the tundra in nothing but their swimsuits for a chance to be in this movie), being out of town, when the one kid who doesn't even want to be in the church Christmas pageant because it's "too many people seeing me" gets her 5 seconds of fame.

At least it's better than the commercial she shot last month - the commercial where they asked kids what they loved about their siblings, and her answer was a deadpan, "Nothing."

She's clearly bound for stardom. If that doesn't work out, she'll have to fall back on her mad styling skills.

How mother allows child to be groomed for
public appearance (note professional stylist securing
hair #4752 into place)

Notice how white those socks are?
How those shoes have been POLISHED?



How father allows child to dress for the entire world to see.
It's a good thing I love him.

Tuesday, December 1, 2015

ug

That sort of sums up the month of November  - ug.

It's nothing we can't handle yet - but its a whole lot of stuff we'd rather not.

Friday, November 20, 2015

respect


Demand vs. Command. 
I've been thinking a lot about these words lately. 
I tell my kids to command respect. I've never used the word demand. It didn't seem right.
I looked up the definitions in Websters, and they were too similar to compare, so I looked in a connotation dictionary, and an emotional dictionary, and this is what I got:
A leader who demands respect does not gain respect naturally, in "demand", authority comes via the use of force. In "command" authority comes via respect. This emphasizes that in usage, command and demand refer to two different ideas.
• In command, there is influence.
• In demand, there is force.
I think this sums it up. I think that's why I can't wrap my head around anything that's going on in the world today. There are a lot of people demanding things.  
"I demand better service."
"I demand you to hurry up with that service."
"I demand quality education for my child."
"I demand that we stop paying teachers 'so much' money."
"I demand the right to practice my religion."
"I demand that you shut the hell up about yours."
"I demand that we finance my favorite charity."
"I demand we stop financing yours."
"I demand that you give me certain privileges."
"I demand you take that guy's privileges away."
This never works. It will never work. Everyone who is demanding things is simply creating more conflict. Demanding sucks. It's a word we associate with toddlers, ex-wives, divas. It ain't pretty.
Commanding respect on the other hand: Martin Luther King, Nelson Mandela, Ghandi, Malala Yousefzai, Susan B. Anthony, Elizabeth Garret Anderson, Rosa Parks, Aung San Suu Kyi of Burma. You couldn't find better company.
Good things happen when people talk to each other, not about each other, and certainly not at each other.. 
So here are my tips for having an actual meaningful, helpful conversation with another human being.
1) Listen to what the other person has to say.
2) Quit thinking of your rebuttal while they're talking.
3) Seriously. Quit.
4) Put yourself in their shoes. Really think. Really feel. Please don't tell me you can't, or you simply won't condone their words or behavior . What is it like to live in that person's heart? What circumstances led them here? If you can't do this you are likely part of the problem.
5) Ask them why they feel that way.
6) Share yourself with them. Your genuine self. Not soundbites, not what you read on Buzzfeed, not what your preferred homepage dumped into your lap today - share YOU, your humanity, your fears, your hope for how things can be different. You will likely find, that most of us really want the same things, but we are human, we are fallible and most important - we are still learning. We want the same things - equality, peace, a beautiful world to raise our families in - but life is complicated and we don't always agree on the best path to take. 
7) Command respect by being a fellow human being - someone that others know will listen to them and work for genuine solutions with others.  I've said it before, but I really believe it - when everyone plays defense, nobody wins. Nobody.



cupcakes

When the world is sort of cruddy (and let's not pretend it ain't right now), all I can really do is put her hair in cupcakes for crazy hair day and tell her the world is a wonderful place. If we both believe it hard enough, maybe it will come true.

irony

Irony is wainting 70 minutes past your scheduled appointment time, the whole while watching this pop up on their computer - reminding me just how valuable I am. Thanks Alina.

Tuesday, November 10, 2015

love is a potato

Hey kids,
Sometimes things get overwhelming.
I want to be a better mom and take you to Carribou and talk about life, and stay up later than late just laughing and joking and making fun of each other.  I want to turn on the fire and not leave the living room until all of our words are spent and there is nothing left to say so we just listen to the fire.
I hope you know that all of that stuff is there, but right now, all there is time for is Taco John's.
Right now, potato ole's mean love.

Monday, November 2, 2015

Scooby trick or treaters

Halloween 2015

Halloween. It makes me a little crazy. I'm more of a Christmas/Valentines Day chick myself, but everybody else in this house is Halloween OBSESSED, so I roll with it. Twenty of Yoda's friends joined her at the studio for a Halloween party on the 30th. An hour later 20 of Kooka's honor choir singers landed at our house for another shindig. Punk hosted his on Halloween night with about 35 (not to mention the 300 or so trick-or-treaters at our door). 

Social anxiety - whatevs - gotta do what I gotta do.

Yoda and Scrappy went as Dorothy and Toto. Kooka went as a zombie bride - which was double excellent, because one of her good friends had the same plan. Punk and friends take the cake this year with their Scooby Squad ensemble. (You can check out the video above). Leah was Eyeore and Rico and I created a creepy clown duo - where he was FAR creepier than I was willing to go. Seriously, I work with kids - I have my limits.


Dorothy and Toto




How is it possible that she's prettier undead than I am alive?

We live in the best neighborhood for Halloween.






Saturday, October 10, 2015

watch it

If you've ever lost a parent, if you watched this girl lose hers, or if you have a soul at all, you won't be able to stop the tears. I've watched it six times today.

Friday, October 9, 2015

yeah - what she said

It's sort of like this - what this girl says. Not all of it - but some of it.
It's like being at Starbucks without Ugs.
Like bringing a bag of Cheetos to your daughter's "progressive school" potluck.
Like living in a world of hipster lumberjacks when you can't grow a beard.

Apparently it's the new "uncool" and I guess I just don't care.

Read Coming Out As Christian on Buzzfeed.

Thursday, October 1, 2015

ScreamTown 2015





Punk says this is the most fun he's had on a shoot - ever.

Yoda says "Zombies are awesome. Plus I got to stay up really late."

Kooka says, "Why do I always miss this stuff?"

Steve the zombie says "Ahhhhggggggggrrrrrrrrhh!"



Punk in a commercial for SCREAMTOWN.












Monday, September 28, 2015

why can't we all just get along

I love social media. I really do.
I get to talk to cousins I would only see twice a decade, I see what my kids are up to, what their friends are up to. I get to watch people I care about grow up, get married, have adventures.

But periodically I have to step back.

Every now and then I can't even stand to open the page, and mostly it's because of this:

People are rude to each other.
They really are.
They are dogmatic and unforgiving and always believe that their opinion is the only one that matters - which is pretty easy to do when you're alone in your yoga pants eating a pint of gelato on your living room sofa. (I speak from experience)

Yesterday I read this little nugget:
"Kim Davis says what hurts most is when people say that God doesn't love her. You know, the same thing Christians tell Gay kids EVERY SINGLE DAY."

Um. No. No we don't.
I don't do that.
I've never done that.
I do the opposite of that.
I don't actually know anybody who does that. Certainly there are people who do. But they don't seem to run in my circle, and if they do, they've kept their mouths shut and their Instagram pretty quiet about it.

Another guy I know, who asked very politely what the difference was between attempting to abort a five month old fetus and trying to save a 5 month old preemie, was met with this:  "Quit denying women the life they NEED because of your own science-denying morals!" He asked a question. All the dude did was ask a question - a question that a lot of people have - a lot of people on both sides of the fence.

Oh - and then there is this:  "Giving the gays the right to get married is only leading to things like legalizing pedophilia."

No.
Noooooo.
Nooooooo it's not.
Sex and marriage are for consenting adults.

Boxing is legal, but you can't punch a seven-year-old in the head and get away with it. Boxing is for two consenting adults.

Alcohol is legal, but you can't serve it at a fifth grader's birthday party, or even a graduation party. You can't. I know people who tried. (Keep it classy class of '89)

Driving - also legal. But you still need to be of age, and believe it or not people have to get into your car willingly - or else we call it kidnapping.

The presidential campaigns are only making this worse - polarizing people who really need to get their $#!t together and do some good.

Because it seems to me that the only difference between religious and non-religious people (or political and non-political people for that matter) is assumed transparency. People can look at a Christian or Muslim or Jew, or even a Republican or a Democrat and assume they know everything that person believes. People think they know, because supposedly there's a book that spells it out (a book they've likely never read, but a book nonetheless). But books can be interpreted in all sorts of ways.

The difference is that when you claim to be non-religious, there is no manual. But pretending you don't have beliefs is assinine. You have 'em, you just get to keep them to yourself. You might believe the Big Mac is better than the Whopper. You might believe we should provide a free college education to everyone, or that we should privatize social security. You might hate Chinese people. You might believe that aliens walk the earth. You might believe that everyone should be vegan, but damn straight you believe SOMETHING, you're just not clumped into a large subsect of people and stereotyped on a daily basis.

Because you know what - there are books about religion, but there are no books about ME. There are no books about my kids, my neighbors, my relatives. People are complex. You can be a Muslim and stand for women's rights. You can be a Christian and be gay or stand with your LGBT friends. You can be a Jew and eat bacon wrapped shrimp. Oh yes you can.
Yes.
You.
Can.

Because people are people and maybe someday we can start treating each other that way. Maybe someday we'll realize that we're all on the same team here - that we're allowed to disagree and still get along.

My picture at the top - it's Yoda. The little girl in the red is my tentative, shy, sweet little kindergartener. My tentative, shy, sweet, little Greek Jewthran of a kindergartener. She's always nervous when I drop her off at school. She's holding hands with a fourth grader who came to her rescue. Nope, that's not a hoodie - it's a hijab. The Muslim girl saw my Jewish/Christian kid and came to talk to her and comfort her.

Or more correctly - this kindhearted fourth grader saw my suffering five year old and helped her. Period.
Why can't everything end like this?
When everybody is playing defense nobody wins.
Nobody.

Thursday, August 27, 2015

let me out




What was supposed to be a routine tonsilectomy has clearly been anything but. Eight days and two hospitals later my five year old is still on morphine and a steady IV drip. The Children's hospital is great, but if they keep giving out paint sets, stuffed animals, and Thirty-one bags every time the kid takes a bite of a Popsicle, we may never get out of here. 





Hell, I will drink that saline solution straight outta the bag if it meant I could blow this joint and get a chicken taco.

As a matter of fact, I did blow this joint last night, if only for an hour. While Kooka sat with Yoda, I dragged Rico through the underground tunnel system that connects this hospital, the major hospital, and the rehabilitation center just so we could get a McDonald's tea in the grown up hospital. 

As we ducked around corners, underneath heating ducts, past the old morgue, and through the electrical workshop, Rico asked me, "Are you sure you know where your going?"

"Oh yeah. If there's one thing I know in this building, it's how to get out of this tunnel."

Kooka asked me the same thing when I took her there tonight. "Oh my god, what IS this place? Do you actually know where we're going?"

I did.
I do.

Why?
Why in the name of god do I know how to get from the sixth floor of the Children's hospital, past the morgue, up the elevator, down the therapy wing, to the Mcdonalds and back again?

Because I used to live here.

Rico already knew. Kooka probably did too, but forgot. Either way they were both surprised that nearly 30 years later, I can still find my way around. For two months this place was my home. I even took Kooka to the fifth floor -station 52, to see my old room, which is now part of the sleep center. 

Ironic, since we never seemed to get much sleep there.

It is a great story. I hope someday I'll get to tell it to them. Maybe when we get out of here. 



Monday, August 24, 2015

furious

It started out like this:


Just a tonsilectomy.
By the time we got home she got herself dressed and asked for a bowl of pasta.
Night two she was less hungry.
By night three we were in the ER pumping five bags of fluid into her.

Night one was tough. 
But by the next day, we thought we were on the mend.
No.
This night was the worst.
Staff that didn't treat her well, pain levels increasing, a doctor refusing to humidify her sore throat, more morphine, an I.V. that fell out, a nurse that yanked out what was left with no warning.

I told her this would be ok. I promised her Popsicles and lots of my little pony movies.
I hate myself right now.

Tuesday, August 18, 2015

crazy konmari stuff

In an effort to put some pre-emptive brakes on the anxiety train that is sure rev up as soon as school starts, I've started to "konmari" my house.

Based on the book:  The Life-Changing Magic of Tidying Up: The Japanese Art of Decluttering and Organizing, the konmari approach virtually guartanees that I'll never have to really clean my house again.

Riiiiiiiiight.

But hey, I'm open to new ideas, so I'm giving it a shot.  The process starts by aggressively discarding stuff.

A lot of stuff.

O.K. most of your stuff.

Again, I am cool with this, because clutter stresses me out.

The whole trick to this konmari thing, is that you don't clean by room - you clean by category - which is brilliant - freaking brilliant. This is why: Whenever I tried to clean my closet before, I was completely forgetting about the clothes in the dresser and the laundry. Plus, I ended up reading old journals, flipping through pictures the kids had drawn, going through my first grade scrapbook, soon I was sucked into a vortex of nostalgia and it was never really clean.  

Fast forward to clothing day. I took every article of clothing I owned (The book says to pretend that whatever you don't bring to the purge you have to throw out if you find it - so I played by the rules and really dug for stuff.) I dumped all of it onto the living room floor. I picked up each piece and asked if it brought me joy, and if the answer was no - into the goodwill bag it went. After clothing day, I donated four huge hefty bags of clothing. FOUR BAGS - which is ironic, considering I always thought I had nothing to wear.  I did the same thing in Yoda's room, and even there I ended up with two large garbage bags to donate.

Bear in mind, I still saved things - baby clothes I'm saving for potential grandkids or college quilts - it's all still there, but the drawers have our favorite stuff inside - and that's all we need. Now they look like this:


Not that I'm saying this whole thing isn't without it's weirdness. The author suggests that the more grateful you are for your belongings, the better they will serve you. She says that you should thank each item before you return it to it's home.

That's not gonna happen.

I don't have time to thank the bag carrying my fries from the drive thru window to my car, let alone the 5 minutes it would take for me to meditate with my hoodie before hanging it up on the hook (on which I'm also supposed to bestow blessings). I wasn't crazy enough to subject my whole family to this - just Yoda and I, but one of the big kids saw the results and did show me a dresser full of properly folded clothes - so there's hope.

I've finished clothes, books, papers, toys - now I'm getting into the trickier stuff - kitchen, mementos, etc. Who knows how this will end up - but we have kept up the intricate clothes folding technique for a month, and so far so good. Now if we can just get the frog spawn, baby turtles, and small herd of caterpillars off the front stoop, our house might be clean.

Monday, July 20, 2015

saying goodbye



The worst part of birthdays is saying goodbye to the old year. Four was great. Happy 5 Yoda.

Tuesday, July 14, 2015

living the dream

Punk and I got to shoot a movie with two famous actors today.  We were extras on location, so it wasn't much, but it was pretty cool watching Punk live his dream - even if it was a 14 hour day for a 5 minute shot.

Saturday, July 11, 2015

road trip 2015



It was something like this - but longer, with more stuff.  Thanks for following our adventures - for all of the texts and pictures and comments and good mojo.

Friday, July 10, 2015

show me


Missouri.
The Show Me State.
I'll tell you what you can show me Missouri:

A summer day without menacing wall clouds following my van all day.
A restaurant without a smoking section (the half wall dividing your Denny's is pointless, we can smell it in the parking lot).
A highway without two-hour traffic delay.
A rest stop not swarming with gnats.
Something to do on the interstate. Seriously - anything. 
A van full of people who don't feel bitter about this place being the last leg of our trip.
A clean sidewalk.
A breeze - lord have pity, just a breeze without it turning into an F5 tornado.
Something to eat besides chain restaurants.

Show me a reason to love you Missouri.
Even a reason to like you.
Please.

memphis and missouri

Not gonna lie - yesterday was a little intense.
First there was Birmingham. Then there was this warm greeting we recieved at our Memphis hotel:

"Do not go outside. If you need something a security guard will escort you."

"You mean outside of the fence?" (the 15 foot locked, steel gate enclosing the entire property)

"No. I mean don't walk outside. Period. And park over there where the security cameras can get the best view. Do not walk outside. Lotta people don't pay attention to that fence, or anything else. Lotta windows get smashed, lotta people get hurt."

What.
The.
Actual.
Hell?

We knew that Memphis was recently named the most dangerous city in America. We didn't know we'd booked our hotel at headquarters.

Regardless, the people were great and we had no problems, but since we were all a little worn out from the day, we decided to have a quick dinner, swim and head to bed.

We try to incorporate a little history into our road trips, but this is also a vacation, we don't want to cry every day. Which is why Rico and I sidelined our planned trip to the National Civil Rights Museum today. 

Located at the Lorraine Motel in Memphis, Tennessee, the museum is probably most famous for room 306, the location of Martin Luther King Junior's assassination. We did stop at the site, which means at least one of us cried anyway.

Instead, we took our crew to Sun Records, also known as the birthplace of a Rock-n-Roll. Elvis cut his very first records here. So did Jerry Lee Lewis. Johnny Cash recorded here, as have U2, B.B. King and Maroon 5. 


Rico loved the tour. Kooka was also impressed. Punk and I thought there were too many people squished into too small of a space for too damn long while somebody talked too damn much. Yoda was firmly in our camp without the d-word.
As far as we were concerned, the 12 dollars paid off when we got to stand in Elvis' spot and rock out with his actual microphone.  We didn't play Jerry Lee Lewis' piano or U2's drums, but we could have.

Lunch was, in a word, disgusting.
There are no pictures of the completely unsanitary, fly swarming McDonalds we were forced to contend with for lunch.
You're welcome.

We've been doing this a looooooong time now, and regardless of what the travel brochures will tell you, there ain't nothin but nothin between St. Louis and Rochester. Quite frankly, there isn't much between Memphis and St. Louis either. Thank heaven for our mandatory frisbee breaks. Punk should qualify for some sort of frisbee scholarship by the time we've made it through Iowa.