Sunday, October 30, 2016

the lasts

I am acutely aware that time is slipping through my fingers this year.  Every day is like trying to hold water - trying to save something I know is unsavable, yet knowing it is the only thing worth saving at all.

First are easy to keep track of, easy to relish. By it's very nature, "first" implies that there are more to come.

First words.

First steps.

First day of school.

But lasts, lasts are more uncertain. Some of them are clear: the last choir concert; the last day of school, the last homecoming dance.  But I know that right now, we are living many of our "lasts" and I don't even know it.

Senior year is hitting me hard.

When will be the last time Punk snuggles up to Yoda and reads her a bedtime story?  Is this the last year he'll carve pumpkins with us, or will he come back?

Our last school night family dinner? The last doodle I'll find in the kitchen? The last time he'll ask me to help him study for a test? The last family movie night?

And even some that I should know the answers to - I don't. He has the lead in the fall play - but will this be his last play? Will he audition for another? Will he get a part? Will he decide to try theater in college? Will he find something else.

We don't know.

So much like the entire first year of his life, I find myself relishing everything - because I just don't know.

We lived one of our "lasts" last night. Since 2008, Punk and Kooka have held an annual Halloween party. At first, it was just a few neighborhood friends, then it morphed into buddies from school, then a few girls from Punk's grade showed up. Eventually, the parties had to be split up - early for Kooka, late for Punk.

But this year, was different.

This year was the last.

We told ourselves that Kooka will carry the tradition - and she will - she had several of her own friends there last night. But I will miss the 70 or so classmates of Punk's that have been a staple at this party for almost a decade. Some of them stop in for cider and a quick snack, some of them hang out with Rico and I, some of them taking selfies in our decked out front yard, some of them hunker in for the long haul to play cards and watch horrible movies.

They know the rules - either dress up, or be subjected to dancing Michael Jackson's Thriller as a front porch solo.  They go all out - full body paint, hand-sewed, meticulously made-up, even shaving heads and lighting themselves on fire

(yeah - I'm a good chaperone like that).

It is one of the best parts of our year.

Last year Punk's crew dressed up as the Scooby Squad, this year - the Suicide Squad. The lengths they go to always amazes me.

I know Halloween is tomorrow. But I think I cried more over this Halloween party than I will at his graduation party. And then three years later, I'll do it all over again with some of these guys:

By then, maybe Yoda will have had enough of Halloween, maybe she'll be cool with a plate of taco dip and binge watching Twilight Zone.  I can only hope, because keeping track of the lasts is so much harder than I thought it would be.

several days

There are several days that I can count as the happiest of my life.

Each day my children were born.

The day I married Rico - the day I found him too.

The day the surgeon said "clean margins."

But I have another one.

It's October 26th. The day Punk passed his driver's test. I know I will miss driving him around, but maybe not as much as I anticipated. Because our first conversation was this:

Me: does it feel great?

Him: SO great.

Me: Yeah - like you can have some independence!

Him: Uh, no. More like so you and Rico will get off my case about having to drive. This is the best day of my life - because I'm never gonna have to drive again.

Monday, October 24, 2016

forgive me

I'm not sure why I suddenly have the need to write about six year-old me.

Maybe it's because six year-old Tiny is standing where I stood. (Though her vantage point seems to be much better than mine was). I see her through two lenses. In one, she is just a baby  - small, vulnerable, trying to figure out the world. Yet in the other, I realize how much she knows, how much she'd take with her, how much the world underestimates the power of her understanding.

In some ways she is like me - her memory is exquisite. I was almost three when my brother was born. But I can remember things even before that - things even my dad forgot until I reminded him - and he confirmed - like the condo we lived in for a few months, and how the playground was behind our house, and that we had barstools and two porch steps before the door. I even remember the day we moved, and that we ordered pizza from Shakey's.

All of this happened when I was two - and even now it is completely clear. I could draw floor plans of that house - I have.

So when people doubt - when they say I cannot possibly remember, that there is simply no way for all of those details to be stuck in my head - they are wrong. When people say this will all be a blip on the radar for Tiny - for any of our kids - they are wrong. They are well-meaning, but they are wrong.

I think that sometimes forgetting is just easier than remembering. Some people would rather forget than face the truth. Some people will say, "It wasn't that bad."

Even if it was.

So, yes, I am slightly obsessed with six - with what she will remember, what will stick in her heart.

I've felt this way twice before - once with Punk and once with Kooka. But this time is different - for obvious de'ja'vu reasons.

So please forgive me if I occasionally indulge in the past. Please forgive my six-year-old voice - but I think that the only way for me to be honest is be in that moment - in that space, and see the world through the eyes of that kid.

The voice of that kid hits me hardest when I go through my old toybox. The kids like to see my "treasures", and there are plenty: my teddy bear Harvey Mudd; the Mrs. Ticklefeather book Grandma June used to read to me; the little green safe that holds pennies I squished in the railroad track and my mom's favorite crystal; the Chinese Coke bottle my dad brought back from Asia - there's a lot of good stuff in there.

But then I get to the drawings - stacks of paper covered in Crayola. I am looking for something good to show to Tiny - to show her what I drew when I was six - but there is nothing here. All of my recognizable drawings are of Mommy with wings or me with tears. My writing is very legible for a six year-old, so why is it still so hard to read? Everything in this stack says, "get well soon" or "please come home" or "I miss you."

They are not all for my mama - some are for Grandma June, or Grandpa, or Granddad too - all of them dying. Me trying to save them with markers and paper and praying.

None of it worked

It's not often that I've felt sorry for myself. Especially about my mom - it's just how life is. But I look at Tiny, and I read those letters - and I remember the little girl who wrote them the night her mama died - and I do feel sorry for her.

Saturday, October 22, 2016

Road trip Day 1-4 Minnesota-Chicago

It was short - it was sweet, but it was our first real road trip in over a year.

And if I had to find one picture that sums up the whole experience it wouldn't be the one where Kooka danced at the Joffrey Ballet:

 Or the one where Tiny sort of learned to swim:

Or even the one where Punk mostly decided where he wanted to live for the next four years of his life:

It would be this one:

The one where Rico got out of the wheelchair, and pushed. After a full day at the Field Museum, Tiny was tired, and Rico gave her a lift (with Kooka for added stability). A year ago, he couldn't walk across the backyard without running out of breath and having to take a nap, but yesterday - there was this.

Of course he thinks pictures can be deceiving. he says they don't tell the whole story - and he's right, they don't. But it tells the good part, the part I like best.

But the reality is that being a disabled family is hard. Being a disabled family in the city is reallllly hard. The world may be more accessible, than it was 50 years ago, but it is also more crowded. The city assumes you use public transportation, it assumes you can run to catch an elevator, it assumes that handicapped parking a third of a mile from your destination is good enough.

But we can't do those things. Rico couldn't finish Punk's college tour with him - there was simply no way to keep up. Several people cut in front of us at elevators or just let the doors close, because we couldn't get in fast enough. We couldn't use metered parking because it was just too far to walk, and even then, the parking ramps with handicapped accessible spaces weren't much closer.

While we don't believe there is anything we can't do, we're still navigating how difficult it can be to plan our excursions.

Rico and I met in Chicago. One of the first things we noticed about each other is that we were both speedwalkers, and we could cover that city on foot faster than we could call a cab.

It's different now.

We still held hands.
Still snuggled in the wind.
Still visited the dinosaurs and the lions of Tsavo.

But it's different.
We all know it.
But still, I am grateful for how it is.

The sign said it took 132 guys to move this pyramid brick. But I had my money on the ballerina, two theater kids and a first grader.

Yeah - this happened.

SUE! Punk's favorite sine kindergarten.

MAC's at the Dells - yeah - it's worth the drive.

Zoe pointed us to Chicago dogs at Devil Dawgs - she wasn't wrong.

Chicago Children's Museum.

Best Restroom winner 2011

In honor of Pa, we stopped at the Vet's museum in Madison. If you go - it's free, it's short, and we loved it.

Monday, October 17, 2016

the first part

“Some day… there will be a story you want to tell for no better reason than because it matters to you more than any other… You’ll stop looking over your shoulder to make sure you’re keeping everybody happy, and you’ll simply write what’s real and true… That’s when you’ll finally produce the work you’re capable of.” 
-JD Salinger to Joyce Maynard 
excerpt from At Home In The World 

There are probably a lot of stories in my life that matter to me. But if my kids ever ask why I am the way I am - it will probably start with this part:

I am six. I am standing in the doorway to my mama's room watching the paramedics. She has been sick before, we have had doctors here, but this is different. They take tubes out and put masks on, and do all sorts of things that make no sense to me. They have never been to our house before. My daddy is standing in the same doorway with my little brother. I cannot believe that nobody, NOBODY from her family is in there with her. I try to go to her, but daddy holds me back, he says the "doctors" need to do their job. 

"She is dying!" I shout at him.

"No - no she's not," he looks me straight in the eyes when he says this. Little brother stares straight ahead and repeats it, "No, no she's not." It is not like he believes it, it is just a mantra we tell ourselves every day.  He is three and I am six - but we know what truth is - and we know this isn't it.

My brain is frozen, swimming in an ocean of panicky frustration. I am trying to find a way to explain things to them. Is daddy really that stupid - or does he just think I am?

"I need to stay home from school today," I tell him, "When she dies, I need to be here."

He is firmer this time, "No, you are going to school right now."

"I can't!!" I shout

"You will."

"Then I am going in to kiss her goodbye and tell her I love her."

He grabs my arm, harder than he ever has. "No, you can do that when you get home."

My face is defiant, my eyes are hard on him.  I never disobey. I never talk back.  But even at six, I know this is huge. "You are lying! She won't be here when I get home."

"You worry too much. She's fine. Now get to school." He kisses the top of my head, but I yank myself away before he can hug me. I look at little brother. He is looking back at me. He knows what I know. 

Vicki lives next door. We walk to school together everyday. She asks why there is an ambulance in my driveway. I tell her that inside my house, my mama is dying. In the same bed where we watched CHiPs three days ago, she is wearing her velvety blue robe with the white flowers and she is leaving me.

"You always think that," Vicki says, "She hasn't died yet. She'll be fine." 

I look at the ambulance. The doors are all shut and the lights are not on. They're not in a hurry to take her anywhere. I don't talk to Vicki all the way to school. I don't talk to anyone. 

I'm in the first grade at Stine School. My teacher is Mrs. Fleischer. When I sit at my desk, she asks if I am OK. I nod, and try to smile. What if I am wrong about mama? What if I act like a big fat baby and then have to come to school tomorrow and admit I really didn't know what I was talking about? But Ms. Fleischer goes to our church. She knows my family and she asks if I want to take a walk with her. "No thank you," I say.

What would I tell her? I am six, my own family doesn't believe me, why should she? Besides, grownups have this uncanny need to quell a child's fear by explaining it away. But no one can explain this one away . . . there is no fear more ginormous than this - my mama is leaving me forever! And there is . . .no . . . .possible . . . .way . . . to stop the train wreck that is about to become my life. 

Mrs. Fleischer takes it easy on me all morning, letting me daydream at my desk and never once asking me to go to the board or read out loud. It's not until 10:30, when I am busy cutting a pig from pink construction paper, that the announcement comes over the loudspeaker. "Mrs. Fleischer could you please have J report to the principal's office?"

The entire class gasps. I am the smartest girl in class, the teacher's pet, the girl in charge of the class hamster, and I am being called to the office. This humiliation is deadened only slightly by the fact that I know what is waiting for me there. Both Mrs. Fleischer and the classroom aide have their hands to their mouths. I stare ahead, unblinking. Carefully, I close my scissors and put them, along with my half-finished pig in my desk, taking a moment to breathe before I close the lid. Mrs. Fleischer kneels next to the desk and whispers, "Would you like me to walk with you?"

"No," I tell her, " No thank you." Mama says to always be polite, "No thank you."  She glances at the aide and follows me anyway.

We get to the principal's office and daddy is standing there with little brother. I glare at my daddy. "She's dead isn't she?" 

The whole office is silent. I have never hated him before, but I hate him now, and I will make him pay.

"I came to take you to the park," he says like he's suddenly decided we could all use a skip-day.

"Why? So you can tell me she's dead?"

"Come on," he says, "let's go." There is a sad smile exchanged between the three of them, the principal, Mrs. Fleischer and Daddy, before he ushers me out the door.

Little Brother and I climb into the backseat of the our blue Grenada. It's October, but in Bakersfield, the sun never takes a break. The pleather seat sticks to the back of my legs. "Is she dead or not?" I ask. Daddy says nothing, and I fold my arms across my chest like I don't even care. Like maybe if I act like it's no big deal he'll let it slip. Grown ups act like things are no big deal. Grown ups act like cancer is no big deal, like dying is no big deal. Hell - they pretend it isn't even happening. "You might as well tell me now,"  I say.

He looks straight ahead and says, "Let's just go to the park." Little brother asks which one, and between sniffles Daddy tells him, "Anyone you guys want." 

We pick the one with the rocket slide. After an agonizing ten minute drive, Daddy sits us down on a small hill near the red and silver rocket, "I need to tell you," he starts, choking on his own words, "that Mommy died this morning." He can barely say it, giant sobs stealing his breath. Little brother looks from me to Daddy, enormous tears threatening his bright brown eyes. 

My face is frozen, no tears, no quivering lip, just silent, seething rage. "Is that all?" I ask. My long blonde hair whips across my eyes in the hot California wind. There was nobody to help with pigtails today.

"Well, uh, yes, I mean . . ." 

"Where is she?" It's a whisper, but full of loathing - I already know the answer.

"She's gone - at the hospital, I mean the funeral home."

"You said I could kiss her when I got home."

"She's not there honey," he reached out for me, sobbing.

I jerked away. "What are you crying about?" I spit at him.

"Well, Mommy is gone, and I miss her, and . . "

"You shouldn't be crying now - she's fine NOW, you should've been crying when she was sick, when she was scared, when she was in the hospital - THAT's when you should've been crying. It's no use now."

Little brother is hugging his knees, tears cutting silent streaks on his summer tanned cheeks. I want to hug him, but I can't because then I would cry, and mama said to be tough for him.

Daddy looks appalled. "Well, if you can be so strong, I guess I should try . . ."

"Yeah, can I go on the rocket slide now?"

He is just staring at me. I stare back. "Can I?"


I run. I run as fast as I can over the hill and up the hot metal ladder until I get into the very tip of the rocket. When I am safely inside, I curl up alone in a ball, and I cry and cry until the salt burns red welts on my cheeks. How will I live? I'm Mama's girl - what am I without her? I look out of the porthole at Daddy & Little Brother. They are my family now. Too bad there's only one of them I can even stand to look at. The other one stole my mama - he lied to me, then stole her away. 

It would take 10 years for me to forgive him. It would have taken longer if I'd known then what I know now: She was already dead when I saw her. He asked the paramedics to pretend to save her, so we wouldn't have to see her still, dead body. Then he sent me to school, and my brother into another room, so we wouldn't see our mommy leave our home for the very last time.

But Daddy didn't know my secret either. Mama didn't die that morning. She died in the night. And I know, because I was there.

Sunday, October 16, 2016

things we just don't take for granted

My whole family went for a walk in the woods today.

I'm just gonna say that one more time.

With emphasis.

My WHOLE family went for a WALK in the woods today.

All of us.

Me: I'm taking a picture of this - it's monumental.

Him: You look taller than me.

Me: I am taller than you.
Him: I don't like it. Duck down.


We also ate chili cheese dogs and root beers, while Tiny attempted to get a word in edgewise.  
But nothing about that sentence is surprising.

Monday, October 10, 2016

totally cool

I went to the doctor on Friday.

Mostly for headaches, but also because my wedding ring seems to be giving me poison ivy all of the sudden.

I've known my doctor since before Punk was born, but hadn't seen her in about a year.  After checking me out her official diagnosis was, "Holy $#!+."

Her second assessment was something like this:
"I've known you for almost two decades and you're more put together than ever. How is that possible? Like how can your life be in total shambles right now, and you're totally cool?"

"Totally cool" probably isn't the phrase I would've used. But still, I knew what she meant.

Anxiety is sort of a buzzword these days.

It's like my whole personality - how I've felt my entire life has become a millennial meme:

or two.

But I have never known any different.

Science is just now figuring out that early childhood trauma can set your biological being to overdrive.  When bad things happen to little kids they don't know the feeling of safety, so their body is constantly pumping out adrenaline. Biologically everything is life or death because your body doesn't know any different.

I don't know if that's what happened to me. I just know that I spent half of my life being scared of everything and the other half trying to cover it up. Ohhhh and I was good at covering it up. Like student council president good, state speech champion good, political campaign manager good. Everything was scary, with an extra thick veneer of awesome.

Why cover it up? Because being that person is humiliating. It's humilating and exhausting. It's especially humiliating if the people around you are the opposite of anxious. It's extra humiliating if you've been through enough therapy to "know better". It is is triple - maybe quadruple humiliating when people assume you don't like them or don't want to be around them.  Because that was never the truth.

OK - "never" is a stretch -  maybe sometimes that was true. But mostly it was this: my nervous system doesn't work like other people's. Mine is different.

It is not an exaggeration to say that if you ring my doorbell unexpectedly, my body will react in the exact same manner as if a pack of velociraptors had suddenly burst forth from behind the couch. It's not that I don't appreciate that plate of homemade cookies, I know you mean well, and I am actually happy to see you - but damn, I also sorta thought you were trying kill me.

Ice maker rattles at night? We're dead. Well, maybe not, because I do sleep with that three-foot steak kabob thing next to my bed just in case. That should give us a running start.

Kid has a fever? Don't even start with this one - especially now - every fever is huge.

Invite me to a potluck? WTH were you thinking? Might as well ask me to give an impromptu maid of honor toast. Don't invite me? Well that's awkward - because now you've just confirmed how weird I actually am, and the fact that the entire world is judging me for it.

You can't win.
Don't try.

But when Dr. M said I was more "together" than I had been since she'd known me. She was right.

In past three years I've delivered two eulogies for the two people who raised me. I've heard the ICU doctors say, "I wouldn't leave if I were you - not even for five minutes." I think the easy answer would be to say that I have a new outlook. That I've somehow seen the light. But I've seen a lot of light in my day. Too much damn light - approximately ten freaking gigantic lights that could burn out my retinas. SoI'm not sure that's it.

I think it might be simply - admitting it.

I have anxiety.
But I also have a great family who gets it most of the time.
I also have a ukelele that keeps my hands busy.
I have a jar of happiness to help me focus on good stuff.
I have a lot of kids who dance with me and use up all of my extra energy.
I have lots of books to read because sometimes I have to fill my brain with new thoughts.
I have a little flip flop necklace that reminds me of good things to come.
I have amitriptyline for when there is too much adrenaline and I can't get it out, but I still need to sleep.

But I have anxiety - and I'm cool with it now.

For today at least.

Friday, October 7, 2016

hurricane help

Lots of people in lots of places need lots of help right now.

Sometimes it's hard to know where to funnel your resources so they will do the most good for the most people.

We happen to know some of these people personally - so if you want to make sure you're contributing in a way that will be most beneficial - we can recommend this:

If you are wanting to donate money to help the people of Haiti recover from the devastation of Hurricane Matthew - I have a couple of ideas for you.
SAKALA - a grassroots, Haitian-led organization - is collecting funds to respond to #HurricaneMatthew in Cite Soleil by repairing homes and supplying clean water in the face of a likely spike in cholera. They do amazing work. If you want the money to go to other amazing Haitian run and led organizations, we will make sure it gets to amazing people doing amazing work. You can donate to SAKALA or The Haiti Justice Alliance (c/o Paul Miller, 2118 Erie Dr., Northfield, MN 55057) Please give what you can. The Haiti Justice Alliance is a 501(c)(3) nonprofit and your donations are tax deductible.

SAKALA was founded in 2006. 10 years later, we're still going strong fostering peace and possibilities in the neighborhoods of Cite Soleil and the world beyond.

Wednesday, October 5, 2016

changing minds

It's been a little over three months since Rico's surgery.

Three months that he's been dealing with the usual bout of crap that one deals with when you have something the size of a cell phone removed millimeters from your femoral artery and nerve.

The one thing that seemed to work for the constant electrical jolts that seize his leg and sometimes the rest of him, is Lyrica.

It's commonly prescribed for fibromyalgia patients, but it also seemed to do Rico a world of good.

But now, he can't get it.
Not like it doesn't exist.
Not like the doctor said, hey we have to wean you (they don't - people use it forever).
The doctor WANTS to give him his Lyrica.

But nooooooooooooo.

Even with three months left of his prescription, which Blue Cross was paying, the one thing that kept Rico out of pain is being dangled above his head because the insurance company (and I quote) "changed their minds", and would like him to try FOUR other cheaper prescriptions before they will allow him to go back to the one he knows works, the only thing that brings him relief.

Da hell?
Are they gonna stop paying for oxygen until he tries three other reactive gasses?

"We're sorry Mr. H, but here at Blue Cross we're always looking out for the bottom line. You're going to have to use straight carbon monoxide for the next two weeks."


He's laying next to me right now, trying to sleep - but he can't, because somebody at Blue Cross is willing to go through all of the paperwork and red tape to push four other medications on him. It's torturous - truly.

They told him to take some Tylenol in the meantime.

I hope the guys at Blue Cross are tossing and turning as much as Rico is tonight. And I hope when they wake up, they realize they're being @$$holes and "change their minds" back.

- Posted using BlogPress from my iPad