The Binder

The binder

The day I got engaged was one of the best of my life. Not only because of the engagement, that came at the end. The whole day was beautiful and loving and warm and sunny and spent with my favorite person in the universe. And then he ended the day by proposing, which was a cherry on top of the enormous chocolate fudge banana split that had been my day.

The next day was the third worst of my life. Within a week of getting engaged, and experiencing the second worst, I was learning a whole new world of vocabulary. "GBM," "glioma," "intrusions."

I was already pretty brain tumor aware. I'd been misdiagnosed with not one, not two, but three brain tumors. Of course, each time a doctor bullied me into getting an MRI or CT scan, the answer was the same. I did not have a brain tumor. I had painless ocular migraines, or synesthesia, or dysautonomia. All neurological problems without tumors to blame them on.

So when, in the winter before we got engaged, my future husband complained about problems with his left arm and leg, I worried.

"You should see a doctor," I said.

"It could be neurological," I said.

But of course it wasn't, he replied. He'd pinched a nerve. Or he'd forgotten to stretch properly. Healthy, strapping, brilliant, baseball playing engineers in their early twenties didn't have neurological problems.

He was happy. He was active. There was nothing wrong.

It took me months to convince him to see a doctor. I wasn't really worried. I mean, he was right, wasn't he? We were living together by then, and I saw him every day. I didn't see anything wrong with him. But when he came back from softball practice and complained that his left leg just didn't quite move the way he wanted it to when he was running bases... I worried.

So he saw the doctor. The doctor performed what were no doubt the standard tests. And at the end of the exam, he shrugged away M's concerns.

"You're a healthy guy. I'm guessing you have a pinched nerve. We could do a neural pathway test, just to be sure where it is, but really what you need to do is stretch better."

"That's what I figured," M no doubt replied, and they agreed the neural pathway test was a waste of time, energy, and money.

Of course, what the test would have found was that the thing blocking his neural pathways was in his brain. And that probably would have let to a CT scan. And that would have shown what we found instead the day after we got engaged.

Don't get me wrong, I'm not complaining about this turn of events. Because M was tied into a terrible HMO, having the opportunity of an emergency surgery to change medical teams got him superior care. Because of M's absurd ideas about honor and nobility and commitment, he would not have proposed to me if he thought he was about to die. Because our engagement was followed by trauma and chaos, our families never had the opportunity to doubt us as a couple, despite our differing religions, lifestyles, and backgrounds.

We were lucky. Unfathomably lucky.

Hardly anyone is ever so lucky.

So for Brain Tumor Awareness Month, I'd like to share something with you. A little piece of what it means to be aware of brain tumors. So aware that they swallow your entire life and become the one thing, the only thing, you are certain you understand anymore.

This is The Binder.

That week after our engagement, when I was learning to speak Brain Tumor-ese, my future mother-in-law started taking notes on a legal pad about what was happening. Recording it, in case the information would come in handy.

I rolled my eyes at her, I'm sorry to say. Or I would have if I wasn't trying so hard to be compassionate and understanding of everyone else's feelings at the same time as my own. I was angry at everyone, I thought their acceptance of M's prognosis would effect him like a contagion, and if he caught even a hint that they expected him to die, he would. But taking notes seemed harmless enough. They might even come in handy.

I had no idea how handy they would be.

Before M even began treatment, the legal pad had morphed into an enormous binder. Everything we could need, anything anyone could need, it was there.

It's still there.

It lacks a table of contents, and the past seven years have faded the labels on the tabs,
but I know what's in there.

Every six months, we go back to the hospital for another set of MRIs. And every month, I lug this enormous thing with me.

Those pink spots are bits of tissue from M's brain tumors.
Hard to be more aware of something than when you're literally holding it in your hands.

It's both an organizational nightmare and wet dream.

Every doctor, pharmacist, therapist, social worker, nurse, patient liaison, insurance representative, etc. we ever
needed to interact with or ask something of, ever.

It still has everything we could ever need, all the information we've ever collected. All the data. All the forms. All the files. Everything.

Every medication, every dose

It's not just the technical details, either. That legal pad of Grandma's became my confidante. M never read the binder- so I was more honest with it than I was with him. If I thought he was depressed, or struggling, or weakening, it went into the binder. And then I could bring it up casually with the doctor, M never being the wiser for my worries.

Reams of pages of the journal, dates and times of seizures, appointments, what we talked about, mental state,
everything.

And it was more than that. It was a constant reminder of everything we had to do, and of everything that Brain Tumors mean. Lab reports. surgical reports. MRI reports. Doctor's notes on official hospital documents. Discs of MRI images of white shapes inside my husband's brain.

Booklets titled, "A Patients Guide to Understanding Brain Tumors," and "Temodar: Your Questions Answered." As time wore on and the binder became heavier and heavier, changes had to be made.

I got a second binder.

I still live with these. And in a few weeks, when it's time for M to go back for his every six month check up, it will come with me. Just the one- the second binder is full of information either for only our references or that has outlived its practical usefulness. Until, as his doctor likes to warn,  "when" his tumors grow again.

Personally, I like to believe "when" means when he's ninety, dying from something totally unrelated, and his weakened immune system allows new tumor growth.

I could live with that.

This is what Brain Tumor Awareness is.


---------------------------
Click here to read about my engagement and what came after.
Click here to read more about "when."

2013 in Pictures

Before I wax rhapsodic about what I did and didn't accomplish this year, let's have the photo spam. My favorite pictures of 2013:

January
Our decision to get a vasectomy was the right one. Even if I still feel sad every time I think that I'll never be pregnant again. Because I am insane.

February
Three of the most delightful children I've ever known

March- a tie
SI and DD helping Aunt Genocide with the four questions. The first time we've had a Passover seder without my parents, and hopefully the last for a very long time

March- a tie
Grandma and Grandpa came to town for Easter, and we walked up to the chapel for services. It was a beautiful day, despite my panic fueled humiliation. 

April- a four way tie
People have told me since they were born that my kids should be models. Well, if I were going to send a picture of DD to an agency... it would be this.

April- a four way tie
I love everything about this picture. Everything.

April- a four way tie
That's one stylish guy I'm married to.

April- a four way tie
We went to New York City for my cousin's bar mitzvah... and if there's one picture that sums up everything about it that meant the world to me, it's this one- my daughter playing with my cousin, while my great aunt watches. My children had never met half of my family. Never. And of course, everyone loved each other instantly. I will never forget it. And neither will they.

May
Poppa, SI, Aunt Something Funny, and DD.
We went to Grinnell for my father to receive an honorary doctorate. It was amazing, and wonderful, and beautiful, and one of the best long weekends we have ever shared.

June- another tie
I finally got to introduce my children to my best friends, and it was magical and amazing.

June- another tie
The bride- a friend of mine for fifteen years- kidnapped my children and took photo after photo after photo with them.

July- another three way tie
We saw the Body Worlds Animals exhibit at the MSI, with our Spanish loaner teenager.

July- three way tie
DD steering the River Queen in Au Sable

July- three way tie
SI steering the River Queen in Au Sable

August
SI and DD were flower girls at the wedding of another friend.

September
DD and SI second first day of school

October- another tie
SI and DD turn four years old

October- another tie
Our family of superheroes

November
I don't care about how much happened in November. This is my favorite picture. Aunt Something Funny reading to her nieces. It just doesn't get better than this.

December
The three sweetest little girls I know.

Now- onto 2014!

Each year, I eschew the traditional "New Year's Resolution" in favor of a to-do list. But rather than a bucket list of things I want to do, I give myself a checklist every single day of simple tasks I'd like to accomplish to make my life better.

I've been doing this for years now.

I know how many paintings I painted and how many books I read, and nearly how many hours I played with my infant twins in 2009.

I can tell you ridiculously mundane details about 2010. For example, I read 21 books that year, three shy of my goal. I cooked on 239 days.

In 2011 I wrote on 321 days. I cooked even more often, and I read a whopping 28 books.

In 2012 I started focusing on more self care. I managed to eat two meals on 347 days. Yeah, I measure that.

So what about 2013?

Me, hard at work, writing a book

Goal: Wrote Daily (365)
Outcome: 293
I feel like I should be shocked I wrote so little, but then I consider what I DID write. I was published on HuffPo a dozen times. I finished a first AND second draft of an entire book. You know what? I might not have remembered to sit down and pen a haiku each day, but I'm very pleased with what I accomplished.

Goal: Ate Two Meals Daily (365)
Outcome: 336
This number went down. And while part of me wants to feel guilty that I did so poorly at feeding myself, I have to remember... I kept getting sick. I kept not being able to eat. And maybe I wasn't as good to myself as I should have been, but I feel better than I did a year ago. I feel healthier (cold notwithstanding) than I did a year ago. I'm going say I succeeded here too.

Goal: Maintained Hygiene Daily (365)
Outcome: 281
Yes, this is still totally unacceptable. But I did better than last year, horrifically enough. And every day that RH is more independent and each day that her big sisters are more interested in playing with her is a day where I can take five minutes to splash some water on my face and brush my teeth. I'm determined to bring my weekly shower average up to at least a two. I think I can do it.

Goal: Went Outside 6xWeek (312)
Outcome: 268
I know I could do better, but I'm pleased to know this number is going up. Plus, now that RH finally walks, I'm confident there are more trips up and down the stairs in the coming year.

Going to BlogHer and meeting this awesome lady?
(And lots of other awesome ladies?) Rocked it.

Goal: Had Alone Time 5xWeek (260)
Outcome: 238
I totally nailed this one. That said, I only nailed it because I enforced nap time so strictly. If this week is any indication, 2013 will bring a fairly dramatic change in nap time. Mostly, in that most days I'm not sure the big girls will take one. And that's a little terrifying. I'll have to find another way to get some time to myself.

Goal: Exercised 3xWeek (156)
Outcome: 123
Pretty damn close! Of course, the bulk of that "exercise" was grown up private time, which I recognize only counts if you're a) very athletic about it, and b) take an awful long time. So I recognize that I didn't *really* get as much exercise as I like to pretend I might have. That said, the new year will definitely have me sweatin' with Richard Simmons some more, so I'm hoping that 2014 will blow that number out of the water.

Goal: Observed Sabbath (as much as 52- but realistically closer to 35)
Outcome: 29
And you know what? That's not half bad. Considering the number of nights M and I had Friday dates, or were out of town on a Friday night... I'd estimate we lit Sabbath candles at home four out of five weeks. So I think I can do better, but I'm glad it's becoming so habitual. Which is really the point of all of this.

Goal: Finished Book 1xMonth (12)
Outcome: 9
This is where I really failed. Especially considering how many books I started. I have four unfinished books on my Kindle, and two on my shelf. If I'd managed to FINISH them I'd be really pleased with myself. Instead? I'm kind of embarrassed. This year- less WordFeud and more reading!

Goal: Made Art 1xMonth (12)
Outcome: 13
CRUSHED IT. Yes, I counted costumes and cards as "art," but let's be honest... it's a creative enterprise, and there are lots of post-modernists who would completely accept a gallery show of homemade children's Halloween costumes as a legitimate thing. So I'm taking it.


I'm only making two changes in my 2014 goals. Instead of "Made Art," it will be "Finished project." And I'm adding another one- "Sang."

It shocks me how little singing I've done recently, and I know I'm emotionally healthier when I sing a lot. So now, it's a daily to-do. So- you can expect there will be many more karaoke nights in 2014 than the last year saw.

Happy New Year, one and all!

My First Easter, or Why Is That Jewish Clown Crying in Target?

Thank you, internet, for this picture of the Jewish Easter Bunny.

Grandma called me and asked, "Should I bring Easter baskets for the girls, or are you making them?"

I kept asking M, "Do you want to make Easter baskets?"

He kept hedging. Finally, two days before Easter, he had a decision.

"I'd like to do the Easter baskets ourselves. You know, start our own family tradition."
"Great," I said, "You should go get Easter baskets then."
"I don't have time for that. You do it."

I hesitated.

"This is your tradition," I started. "Really, you should do this."
"You'll do fine, I'm sure. We don't need to do exactly what my family did. We'll do our own thing. Just go get the kids some Easter baskets."
"Like, the plastic wrapped ones in the store?"
"No, you make them yourself."
"And... what goes into an Easter basket?"

He stared at me blankly.

I repeated myself. "How do you make an Easter basket?"

Again, the blank look. "You get a basket, and you put the stuff inside."

"Describe one to me. Illustrate it."

He looked at me like I was from outer space.

"I've never had one! What goes into it?"

He heaved a deep sigh, and said, "It needs fake grass, and you hide jelly beans and stuff in the grass. It needs a chocolate bunny, and it needs a cellophane carrot thing filled with candy. And giant robin's eggs. Not those little ones."

Giant robin's eggs? "Just one chocolate bunny?"

"Oh yeah, just one. Not that much candy. It should have more toys than candy."

"Toys? Like... what? A book?"

"Yeah, a book would be good."

Pinterest is not my friend.

I bit my lip. I was a little embarrassed that I still felt lost and confused. I had never once in my life had an Easter basket. I'm Jewish, why should I have? But I knew he was right. He had no time to go to the store. I had a job interview that day, I would stop at Target on the way home, and pick up the stuff for Easter baskets. It would be over quickly.

"Fine," I said. "I'll make the Easter baskets."

I began covertly checking Pinterest for some sense of context. What goes into an Easter basket? Gardening supplies? Homemade cookies? Pajamas rolled into gigantic carrot shapes? All of it was overwhelming, and looked improbable. At least it seemed like a starting place.

M went to work, and I dressed in the closest thing I could find to appropriate clothes. I put on my best Fluevogs, and went off to my job interview. As this is still me we're talking about, I cobbled the outfit together at the last moment. It involved putting on a pair of sort of sexy rugby socks- but I had to pull them ridiculously high.  They were tight around my thighs, almost uncomfortably so, but they looked professional under the skirt. It was either that or bright orange leggings. I figured I'd just take them off when I got home.

The job interview was over quickly, which made me worry. It also gave me plenty of time to spend at Target before my sitter needed to leave.

As I neared the parking ramp, I began to feel very nervous. What goes into an Easter basket? I kept asking myself. It seemed like a lot of pressure.

I warmed up by getting myself two new cardigans and two new skirts. I put them in the cart, thinking they'd be great either for working the new job, if I got it, or just for looking nice for the spring. Feeling slightly better about myself, I turned the cart around and approached the Easter section.

The nice feeling disappeared instantly.

I watched the moms and grandmas hurrying through the aisles with a sense of purpose. I studied them, the way they simply grabbed things, as though dictated by a higher power, and pushed their carts towards the grocery section. They looked busy, harassed, but not at all bothered by the task at hand. I approached the two aisles of baskets with a sense of foreboding.

So. many. baskets. So many colors, so many sizes...

Baskets that were lined in fabric, baskets that looked like animals, baskets made of plastic, of wood, of felt. Baskets in the shape of stuffed heads. Spiderman, Yoda, Princess Aurora...

My stomach lurched.

I grabbed a gigantic basket. Huge. It was a ridiculous price. I put it back. I picked up the cheapest basket I could find. It was so chintzy looking, and tiny. A book would never fit in there. I put it back.

I circled the aisle for twenty minutes, my blood pressure rising, my throat tightening. And then I saw them- the baskets. A pink one, for DD, a yellow one, for SI, and another half a dozen colors to choose from for RH. I grabbed three baskets, and moved to the candy.

My understanding of Easter baskets

Reece's pieces in a cellophane carrot shape. Perfect. Jelly beans, check. Chocolate bunnies...

I stared at the wall of chocolate bunnies. And panic set in.

You see, the only Easter baskets I'd ever even seen up close were the display baskets in store. Baskets full to overflowing with toys, half a dozen chocolate rabbits poking out. Maybe a stuffed animal or two. M hadn't said anything about the stuffed animals.

I stared at the bunnies, and my head started swimming. Only one, I thought. I decided that if there was only one bunny apiece, I needed to make it count. I grabben the Lindt bunnies, and began to turn to the toys.

That's when I saw the giant peanut butter cup bunny, and I thought of M. M would LOVE that bunny... I thought. And then it hit me- M was the one who was crazy for Easter. Should he be the one getting a basket?

I went back to the baskets. I found a nice blue one. I put it in the cart. Then I went back through the candy, grabbing another one of everything. I remembered M's request for "giant robin's eggs." There were the miniature robin's eggs, and there were the regular robin's eggs... but that was it.  I circled the candy again, scouring every shelf. Giant robin's eggs? I circled again, more slowly. I started to feel an odd pain in my left hamstring, and ignored it. Again, I circled the candy section. No giant robin's eggs. Feeling hopeless and useless and utterly incompetent, I grabbed a bag or regular old robin's eggs and began rehearsing my speech of apology and contrition. I then collected the Reece's bunny, and stared at the four rabbits in the cart. Another panicked thought reached the surface.

What about you? If all four of them get baskets and you don't, the girls will want to know why. Do I really want to explain why mommy and daddy don't celebrate Easter together? SHOULD I? Isn't doing this as a family more important than differentiating between religions and beliefs?

My lips dry and feeling that odd pain growing stronger, I circled back to the baskets again. I got another one. I grabbed more Reece's pieces, another chocolate bunny, and moved over to the toys. I felt my feet ache in their gorgeous high heels. I willed myself to ignore it, and moved on.

I had just laid eyes on these cute little cups. Like the ones Grandma had gotten the girls for Christmas. I froze.

What about Grandma and Grandpa? Won't THEY need baskets?

I turned around again. I spent the next ten minutes searching for two more different baskets, and finally found what seemed to be the very last ones. All matching, but none the same. Now I had seven baskets, seven chocolate bunnies, seven Reece's pieces carrots... but what else?

I started stopping random moms. "What do you put in an Easter basket?" I asked. They looked at me like I was crazy. "Toys and candy?" "Right, but, which toys? Which candy?" They backed away slowly. I started sweating.

I stared into the vastness of Target. It was like looking into the abyss. Everywhere there were Easter signs, "Easter pajamas," "Easter shoes," "Easter toys," "FOR EASTER," "FOR EASTER." "FOR EASTER," was everywhere.

Pinterest- you're not helping.

I went tearing through the store. I picked up objects at random, wondering, Would M like this for Easter? Would Grandma? Would Grandpa? Would RH? Is THIS something that people do for Easter? Should I get Grandma a new nightshirt? Is that weird? Would Grandpa like this book? Maybe movies instead! The girls can get movies in their baskets! Easter dresses! Slippers for Grandma! Bunny shaped cord organizers! Yes! FLOWERS FOR EVERYONE!

I thought back to every commercial I'd ever seen.

Do people give each other clothes for Easter? Do they give each other food? Movies? Should I get M romantic stuff? What the hell do I get my father in law?

I started having heart palpitations, but I kept moving on. I realized that my left leg was going numb, and tugged at my absurd socks, throwing things into the cart all the while. A hungry caterpillar rattle for RH! Sundresses for DD and SI! Books, books, books! DVDs! Herb gardens for me and Grandma! All the while, stopping random strangers, gesturing at my cart, and practically screaming into their faces, "Does this look right?"

It was in the underwear section, picking up some new underpants for DD and SI that I completely lost it. My feet were aching in my interview heels, and I could hardly put weight on my left leg. It stabbed and throbbed simultaneously. When I shifted the elastic where the socks cut into the meat over my knee, a stabbing pain shot down my thigh, and my leg buckled. I leaned over my cart, buried my face in a heap of little girl nightgowns, and wept aloud, "What the HELL goes into a freakin' Easter basket?!"

I limped to the checkout lane, leaning heavily on my equally heavy cart, and began unloading the loot. As the things came out of the cart and onto the little conveyer belt, I began stashing them under the chewing gum. Mostly the things for my own basket. I don't deserve Wonder Woman pajama pants, I muttered under my breath, shoving the offending item beneath the Mentos. I crammed a copy of Skyfall behind the stack of People. I grabbed a bottle of water from the tiny fridge, opened it, and took a staggering, desperate swig.

A checkout girl from the next aisle over tapped me on the shoulder and pointed to my blouse. I looked down, and realized that it was unbuttoned nearly all the way to my skirt's waistband. In buttoning it up again, I discovered my own lipstick smeared all over my shoulder. I had a moment to imagine myself...

Half topless. Lipstick smeared like the Joker. Sobbing into a shopping cart overflowing with... so much junk.

The harrowing sounds of reality brought me from my humiliated reverie. "Your total is $504.18."

I burst into laughter. It was almost tears. The poor check out girl ushered me out as quickly as possible.

I called M from the parking lot, and without preamble announced, "I just spent five hundred dollars at Target."

A pause. I imagined he wasn't screaming yet because he was still at his desk and it would draw the attention of his office mates. When he spoke, his voice was on the verge of cracking. "On WHAT?"

"...Easter baskets?"

"Oh my fucking god. You know it's all got to go back, right?"

I turned on the engine for the car, and discovered that I have been in Target for more than two and a half hours. I was already half an hour late for the sitter. At least when I get home, it will be nap time, I told myself.

But upon arriving limping up the three flights of stairs to our door, I discovered the sitter had failed to enforce nap time. My children were in the midst of their post-nap time un-napped meltdowns. Screaming, flailing, hitting. I didn't even get my fancy and incredibly painful shoes off before enforcing time-outs and calming hysterics. After collapsing on the floor and engaging in a pseudo-shouting match with a child who was beating her tiny fists against the floor in protest of my removal of the torture devices I once called socks, I initiated bedtime two hours early. No child protested- a small miracle. M returned as I was organizing my dozen Target bags- to at least take a look at whatever small disasters I had brought home.

He stood in the doorway, jaw agape as he surveyed the damage. Seven baskets. Stacks of books. Heaps of $5 DVDs. For a moment, it looked like he might yell. Then his eyes turned to my face. His voice tender, full of concern, he asked, "What happened?" I burst into hysterical sobs.

This is probably pretty accurate.

I told him about the peanut butter bunny, and then the fifth basket, and then the seventh basket, and the EASTER EASTER EASTER signs everywhere, and the books, and the moms looking at me as though my head was on backwards, suddenly realizing as I said it that I must have looked insane with my lipstick smeared to my ear and my shirt hanging open.

Calmly, he helped me set aside the things to keep for each basket. A chocolate bunny. Fake grass. A book. A carrot shaped cellophane filled with candy. A bubble wand. It looked... right.

I filled a 13 gallon trash bag to overflowing with the things to return. As the scene began to look like a normal evening in our home, he asked, "What about the clothes you got for yourself? Where are those?"

It was my turn to stare at him blankly.

I knew they weren't in the car. I was careful not to leave a single bag, lest it contain chocolate that might melt in the afternoon sun. I scoured the house.

Nowhere.

And I thought back to the only place it could be- the place where I suddenly remembered a half topless crazy lady looking like a horror show who had opened a bottle of water, taken a single swig, and then left it on the counter without paying.

In the cashier's rush to get me out of her store, she must have forgotten to put the last bag into the cart. It would have been the last bag, too- the clothes were the first thing to go into the cart.

I began to cry again, curled into bed, and hoped that sleep would come quickly. "Good thing you got the giant robin's eggs!" he said. I nearly punched him.

Bright and early the next day, I once again found myself at Target. It had been about eighteen hours since my last visit, and I felt notorious. Conspicuous. I was terrified that despite my lack of heels and limp and lipstick, I might be recognized.

I set my trash bag full of freshly purchased goods on the Customer Service counter, and asked if there was any chance they had found a bag with some skirts and cardigans in it at the check out the previous day. The woman took my receipt to a manager and told me we'd have to wait a while. Over the next half hour, I told her my tale. After all, it's so awkward just standing next to a gigantic bag full of candy that you know is just getting thrown away. My guilt was palpable. I had to confess.

As I told her of my panic, of my desperate search for the right baskets, she suddenly perked up. "Oh! I THOUGHT you looked familiar! I saw you here yesterday!"

As I felt the blush of pure mortifying horror rush to my face, I looked down to hide my shame. I discovered that my blouse was partially open. I surreptitiously buttoned it up again, now waiting in silence for the manager and my new cardigans.

They found the record of my clothes, and allowed me to take them back with me. As the Customer Service lady went through the entire bag- the four baskets, the four Reece's carrots, the chocolate bunnies, the herb-gardens-in-a-bucket, the bunny shaped cord organizers- she kept shaking her head and laughing.

"You know, these would have been lovely Easter baskets."

With my tail between my legs, I got into the car to hit my one last stop before Easter could officially commence. I had to get several dozen eggs from the grocery store. I picked up the cheapest eggs I could find, and returned home. Exhausted, but hopefully redeemed.

While I was out Grandma and Grandpa arrived from Minnesota, and they were playing with their grandchildren when I arrived. Naptime began peacefully. Grandma had all sorts of things to put into the Easter baskets. A lot of things I had just returned to Target. Clothes, toys, bags upon bags of candy.

As Grandma emptied my grocery bag, I heard her laughing.

It was Easter, and I had returned from the store with a bag full of brown eggs.

BROWN eggs.

You know...

For Easter.

Next year, this is M's job.

Our finished Easter baskets. Hopefully, worth my utter public humiliation.

My Little Unicorns

My Little Unicorns

My children have become very picky eaters.

This is absolutely my fault.  For the last year- a third of their lives- I've been trying to take it easy on myself.  That meant that while I was going to school and M was going to school and I was pregnant, I didn't do a lot of cooking.

Now, I love to cook.  But when you've got to choose between doing your homework or making a healthy meal, I chose the homework.  And for that matter, if you have to choose between getting your kids to eat their food quickly or getting them to try new things, I was going to opt for quickly.

By the time RH was born, the girls only ate a small list of foods.

Beans, corn, avocados, mangoes, PB&J, grilled cheese, string cheese, pizza, melons, berries, grapes, peas, french fries, and tortilla chips.  Oh- and breakfast.  For breakfast, they're always pretty much awesome.

I think that's it.

So, that was a problem.

As soon as my post-surgical swellings and whatnot started going down, I decided to take control of the situation and get my kids back to eating all sorts of food.

How was I going to accomplish this feat?

Phase One

It came to me in a flash.  Grandma had made macaroni and cheese with wheel shaped noodles.  With peas mixed in.

Now, my picky eaters only occasionally eat mac n' cheese.  And when they do, they only accept elbow macaroni.

And they absolutely refuse to "mix" foods.  It's a common toddler fixation- each food must be separate.

I saw the effort she'd put into the meal, and my heart dropped a little.  My picky eaters were not going to eat that food.

Unless...

As we got ready for dinner, DD began to tell me that she wanted to be a unicorn.  "Me too!" piped up SI.  And thus was my brilliant idea born.

"You CAN be unicorns!"  I said, "All you have to do is eat unicorn food!"

"What is unicorn food?" they asked me.

"Circles," I said, "Unicorns eat circle foods.  Like apples, and peas, and unicorn noodles.  And guess what?  Grandma made us unicorn noodles for dinner!"

You would have thought I told them that I had a real life unicorn in the kitchen.

Phase Two

They actually ate their circle foods pretty well.  I had told them, that if they ate their unicorn food all up, they would start to turn into unicorns.  So after dinner, while they ate a few last unicorn noodles, I hopped into my studio and whipped up a couple of horns for them.

It was simple enough- two colors of colored pencil, a bit of watercolor paper, and a ribbon turned into each unicorn horn.  They were thrilled.

The next day, we tried more circle unicorn foods.  It was easy- all you had to do what cut the food into a circle shape, and it was unicorn food.  And if it was unicorn food, my kids would try it.

Within twenty four hours, it was time for my unicorns to grow tails.  I used some rainbow yarn I had lying around, and made them simple tassles they could tie around their waists.

By the end of the week, we'd had a wide variety of circular foods.  Fruits, vegetables, tiny unicorn blueberry pancakes (they previously wouldn't eat pancakes with fruit in them), anything I could think of.  And my little unicorns had earned their hooves.

Phase Three

Although I haven't figured out what to turn them into next (SI wants me to turn her into a zebra, but DD wants me to turn her into a MAGIC unicorn), but the long term effects have started.  Already, they are much more willing to try new things- circular or not.  It's not perfect- but it's something.

I'm thinking that the next time they turn into another creature, it will be through eating orange foods.  Oranges (why won't they eat them???), sweet potatoes, carrots, cantaloupe (DD's favorite anyway), cheese...  Maybe orange foods will turn them into robots?  I don't know.

And after orange foods...

Greens.

And then?  Then I might just be done with having picky eaters.

Remember, Remember, the Fifth of July

Photo taken July 1st, 2007 by C. Lemanski

Today is a very important day in our family.

You see, yesterday was Independence Day.  And, just as it was five years ago, it fell on a Wednesday.

Five years ago, yesterday, we woke up late.  We lounged in bed for hours.  We got up and, in our pajamas, I made us an epic brunch of California Benedict.  We ate a dozen eggs.  We went back to bed, laughing and full.  We napped lightly, and then showered and got dressed.

Five years ago yesterday, M and I enjoyed our mid-week day off by heading to a friend's rooftop and backyard barbecue, drinking some Shandy, and sweating and smiling in the absurd Chicago heat.

We walked through Pilsen, where we lived, as though through a different world.  Every other block was blocked off, many illegally, for parties and concerts and fireworks.  There were music and colorful explosions everywhere.

I remember one moment in particular.  We were drinking beers at the party, and I caught M pointing and me and grinning.  His friend Bradley gave him a high five.  I had no idea what they were talking about.

It turns out, M was telling Bradley that he was going to ask me to marry him.

You see, M had this grand master plan.  On Friday, M was going to take the day off, and we were going to go up to Guppy Lake.  We were going to spend an entire week up there, TWO weekends even.  M was going to bring a bottle of champagne and a ring, and take me to my favorite picnic spot, and propose to me.

But on the Fourth of July, five years ago, he couldn't wait.  We walked home from the party just after dusk, completely surrounded by fireworks.  In the air, on the ground, shooting out of windows... everywhere.  We laughed, we held hands, and we went back to our incredibly cool and comfortable basement apartment.

And M asked me to marry him.  No ring, no pretense, just the colorful showers of light filtering through the curtains.

And I said yes.

We had one wonderful night.  We both went to work the next day.  At lunch, we met up and picked out a ring.  And then I went home after work, while M went to play in his company softball game.

I got in my pajamas, and read through an inbox filled with congratulations from friends and family.  And then the phone rang.

It was my future MIL.  She was in a panic.  A coworker of M's had called her, he was being taken to the hospital in an ambulance.  By the time the coworker called me, I already had my shoes on.  With my pajamas.

It took me less than fifteen minutes to take the usual half hour drive to the hospital- at rush hour, during the infamous congestion of the Taste of Chicago.

I cried most of the way.  I got lost for a harrowing moment on lower Wacker Drive.


Filmed on Lower Wacker Drive.  It is one of Dante's circles of Hell.


Horrifically, this song came on in the car:




I nearly crashed the car I was crying so hard.

The first time that, outloud, I called M my fiance was when I was looking for him in the ER.  A very nice, older doctor told me to calm down.  That he would be fine.

I didn't know then that that would be my mantra.

On the Fifth of July, five years ago, M had a gran mal seizure and strokelike symptoms.  He awoke in the ambulance.  He had several CAT scans.

They showed several masses in his brain.

I spent the latter half of the Fifth of July, five years ago, shivering in the hospital in my pajamas, joking with M about the copious amounts of dirt that just kept coming off of him.  He got three sheet changes while he was moved from gurney to gurney.  They were all completely full of ballpark sand.

When we finally left the hospital, there was already a new plan.  We weren't going to Guppy Lake.  We were going to spend the weekend with both sets of our parents, who up until then had never met, getting ready for M's exploratory surgery the following Tuesday- the Tenth of July.

On Tuesday, we went in early in the morning for M's surgery.  My parents, M's parents, my sister, two sets of M's ants and uncles, and M's grandfather and his wife were there.

M was so brave.  He didn't show a moment of hesitation.  We were going to do this brain surgery thing.

I have never experienced a longer day in my life, sitting in that private waiting room, next to the phone that was bolted to the table which might ring with information about the surgery.  Across from the clock that was bolted to the wall.  Cruel room design.

It took all day.

Finally, M's surgeon came into the room, told us that M's surgery went well and that a few of us could go see him in the recovery room soon.  But first he wanted to talk to "the parents and fiancee."

He took us to a tiny little consultation room.  Tiny.  And in that room he told us what he had found in surgery.

The masses were cancerous.  They were worse than cancerous, they were stage four of an incredibly malignant brain cancer called astrocytoma.

They were inoperable.

He kept using the phrase, "extremely aggressive" to describe the cancer.  Not the treatment, but the cancer itself.

And then, bravely, my future father in law asked about the prognosis.

Sometimes, the doctor said, you see patients surviving five or ten years out.  Sometimes.

Not often.

He told us that we shouldn't expect it.

He told us that, with the advanced stage of the cancer, with its placement... most of the time patients only have about two years.  Maybe less.

But, he added, M was young.  He was healthy, otherwise.  Who knew?

It was like a dream.  I didn't cry.  Well, I cried a little, but mostly because I just didn't know what else to do.  I followed my future in-laws back to our private waiting room, where almost a dozen people were waiting for the news we would have to deliver.

Everyone wept.

M's grandfather, the pastor, prayed.

I did nothing.  I stared at nothing, I thought nothing, I felt nothing.

And as my family, and M's family, began hugging me and weeping, I heard myself telling them that everything was going to be just fine.

I told my future in-laws, M will be just fine.  He's going to beat this.  He's going to be okay.  Everything is going to be fine.


I said it over and over and over again.  I said it and I willed myself to believe it, because believing absolutely anything else was going to destroy my entire world.

Over and over and over.

From our "Save the Date" shoot- M newly hair-free

He's going to be fine.  He's going to be fine.  He's going to be just fine.


And nobody contradicted me.

I saw him in recovery, and he was groggy and in pain and confused.  But he told me to go home.  To sleep.  To come back in the morning.

I wouldn't have, if I had the emotional energy to argue with my parents and in-laws and sister.

I slept on the couch that night.  My future in-laws slept in our guest bed, and my parents slept in our bed, and I pulled out a blanket and curled up on the couch.  As I lay there, too conflicted to rest, my father came up and sat down next to me.  And while he sat there, and hugged me, I wept.

I wept like I have never wept before, or since.

I cried and cried and cried, because I had been happy.  I had been so happy.  I had absolutely all that I wanted from life- I had everything.  And after only sixteen hours... it was gone.  My life was gone.  I wasn't newly engaged and in love and ready to start out... I was preparing for widowhood.

I let myself mourn.

And in the morning, I started telling myself again, he's going to be just fine.


We went to the hospital, where he was slightly less groggy.  And we prepared to introduce him to the news. To tell him that he had terminal brain cancer.

But we didn't.  We couldn't.  Nobody did.  We told him what kind of cancer, what stage, and that it was very aggressive.  But we didn't give him the prognosis.  He said he didn't want to know.

I thought he was so brave.  And I knew I was right- he was going to be just fine.

We spent the next ten days getting him into a clinical trial for an additional treatment.  Banking sperm.  Fighting with his HMO.

And I kept telling everyone, he was going to be just fine.

Three days before our wedding, Ted Kennedy was taken to the hospital by ambulance.  It was big news.  It turned out that he had seizure.

Of course, M kept up on the developments of that news.

...and then the news came that Ted Kennedy had the same kind of cancer that M had.

...and along with that news, the reporters did their job of giving the whole story.  The entire story.  Including the prognosis.

M learned that Ted Kennedy probably had eighteen months to live.

That was three days before our wedding.

Nine months after his diagnosis.

He was halfway there.

And I told him, he was going to be just fine.

M's speech at our wedding,
"Thank you for your thoughts
and prayers.  We heard every one."

Five years ago, today.

Five years ago, and he has had no new growth, no new symptoms.

Five years, and his MRIs are clearer and clearer, less and less frequent.

Five years, and my husband is just fine.  His cholesterol is his biggest health problem.

Five years.

Every Independence Day, we celebrate our engagement.  And we celebrate the one incredibly happy day we shared.  Most years, I make California Benedict for breakfast.  Each fireworks display reminds us of one of the happiest days we will ever have.

I love my husband more than I can possibly say.  The last five years have been more than wonderful, they have been a gift.  While I can't claim to have cherished every day, I can promise you that I have never once gone to bed feeling bad about the course our lives have taken.  No matter how hopeless it seemed during the year of M's unemployment, with two new babies... no matter how exhausting it was with M working insane hours, with both of us in school, with me pregnant and with the girls at home... no matter how frustrating it has been to live our lives together, we have been unfathomably fortunate.

My husband is alive and well.  He is just fine.  Five years later.

His medical team doesn't talk about his prognosis.  They talk about the weather, our children, their children, even politics.

M?  He's just fine.  We're just old friends with the neuro-oncology department now.  Bitter enemies of our old pharmacy technicians.

The Fifth of July is always an odd day for us.  On the one hand, it is full of bad memories.  Memories of fear and confusion and pain.  On the other hand, it is a victory.  It's another Fifth of July that we can spend together.

Five years.  And no sign that there is an end in sight.

Shortly before our wedding, M told me it was his goal to have spent more of his life married to me than not.

Five years down, twenty to go.

I am so glad to spend every minute of them with my husband.  I am so grateful to have him with me, not folding laundry and forgetting to take out the trash.

There is nobody on this earth I would rather spend the next twenty years with.

Or the twenty after that.

Or the twenty after that.

Five years is a long time.  But not nearly long enough.

Here's to the rest of our lives- the long and open-ended ideal we all mean when we say "for the rest of our lives."  Not "eighteen to twenty four months."  Not, "for as long as we have."  Not for, "as long as you're mine."

Forever.  Until we are old and gray, and our children and grandchildren are grown, and death comes to us as the natural end to a life well and thoroughly lived.

Here's to every five years.

Here's to the Fifth of July.

...and to the Twenty Third of May

Here's to every single day.

Our family, nearly five years later.

Here's to M.  The love of my life.

Nursing Woes

First things first

The birth story is coming, I promise you that.  But right now, I'd like to talk about nursing RH.  Or rather, the hazards of nursing RH.

She's a good nurser.  She gobbles down milk like no babe I've ever seen.  She chugalugs mightily.  You can hear her little glug glug glugging from across the room.  It's incredibly adorable.

Her latch?  Horrific.

Nursing in the hospital

Utterly terrible.

She has a few problems when it comes to latching.  For one, she holds her tongue to the back of her mouth when she opens up her mouth.  Even when she screams.  No, she has no tongue tie.

That means that, once she latches, she does one of two things.

A) She pushes the nipple out between her gums while she sucks it back and forth.  This is excruciating.  She also sometimes manages to catch a bit of areola in between her gums and lip while she's doing this.
B) She scrapes the front of the nipple incredibly hard with her tongue while she sucks.

Sometimes she does both.

This results in purple and blue, scraped and bleeding, achy nipples of constant misery.  Sometimes with blistered areolas.  Yes, that it every bit as painful as it sounds.

Of course, once she's had a few gulps and starts to get sleepy, I can disengage her and re-latch.  A couple of tries in and she's latched fine- happily chugging away and not causing anybody any pain.  At that point, nursing becomes positively lovely.

Before that can happen though, there is the first part.  The part where I am terrified of putting my nipple into her mouth, lest she mutilate me some more.  The part where I scream and cry and thrash, trying not to cause any more damage before I can get her the hell off of me.

Four nurses in the hospital evaluated our feedings.
My doulas watched this procedure.
RH's pediatrician has chimed in.
They all agree.

There's basically nothing I can do.

The girls know that this is how babies eat

She's getting better, but as she gets better, she also gets stronger.  And as she gets stronger, she gets more aggressive.  She has over the last thirty six hours (or approximately twenty nursings) discovered that she is a speed demon.  She is now capable of snapping her jaws just and beginning to suck so fast you can't even see it happen.  So fast, the my nipple ends up caught perpendicular in between her gums while she begins to suck hard enough to move a golf ball through a garden hose.

There is nothing I can do to fix this, but to wait.  To try to be patient and keep correcting her latch.  While my nipples swell and ache and bleed and maintain a vivid purple color.

The thing is, this isn't exactly unusual.

This is the third baby I've nursed, and the second who seemed determined to inflict pain in the early days.

SI?  She was vicious.  Entirely different, though.  She would get her latch, she would nurse perfectly for a few moments, and then she would clamp her jaw shut like a vice.  There was no opening it.  And I would scream and cry and beg and plead, and do my best to pry her tiny jaw open, all to no avail.

DD was a perfect nurser, almost from the word go.  She never did anything to cause me pain until the day she weaned.

So I know how this goes.  I went through six weeks of agony with SI before she just nursed like you always assume a baby is "supposed to."

And now here I am with RH.  Who keeps fixing one problem, only to invent a new method of torture.

Only this time, DD and SI are around to watch.

DD is terrified whenever I start to nurse the baby.  She wants to know if RH is going to hurt me, if she's biting me, if I'm going to cry, if I'm okay.

She's making cute little noises!

I feel so guilty.

And Grandma and M... they don't like it either.  I wouldn't if I were them.  But frankly, their repeated suggestions that I pump and let somebody else take a turn feeding her for a day just make me mad.  I don't WANT to take a break.  I worry that taking a break is just going to set her back instead of moving her forward.  But it's tempting.  Because my nipples?  They're usually in agony.

Yes, I want to pump.  That's because I have such ridiculous over supply.  Because frequently, RH will torment my nipples and then have nothing to eat.  But I *like* nursing.  You know, once the ungodly awful part has passed.

I'll snap at M about it.  But I won't snap at my MIL.  I'm too grateful that she's here, taking care of my home and my toddlers while I'm recovering.  (The three of them baked delicious sweet potato muffins today.  Who could complain?)  But I'm just going to keep up putting my nipples directly in harm's way and trying to stifle the screams.  And trying anything I can think of to make them hurt a little less.

Gel nursing pads keep them raw, but help with the bruising.  They make my nipples ache each time I take them off.

Cloth nursing pads stick tot the drying blood and then peel away the scabs when I try to take them off.

No nipple shields mean that I'm constantly leaking milk on myself.

Every time a cool breeze goes by, my nipples scream.  Every time I step into the shower, each drop of water makes me wince.  When DD or SI or even M try to give me a hug, a flinch away from the pressure against my chest.

Nursing?  Not so glamorous.

I know it's going to get better.  I know it is.

I know how to get us a good latch.

Me and my girls- you'll be seeing a lot more of this picture

I know what a good latch feels and looks like.  I know how nursing works- I was an awesome cow for almost ten months with my twins.

But I am a sore and tired cow this time around.

One week down.  One week of improved nursing, one week of improved attacks.

Hopefully this time next week things will be better.

Hopefully.

And if not, I suppose at least I have one recourse when it comes to bolstering my spirits that was denied to me for most of the last year.

At least now I can pour myself a drink.




FYI- My MIL is awesome.  As I type this, I am eating pigs in blanket (with fake pigs) and a spinach/strawberry/raisin/almond salad with black currant vinegar, she has put my children down for a nap, and she is snuggling my infant.  She is awesome, and I mean no disrespect whatsoever.




...also, I have spoken with a lactation consultant, who is perplexed enough that she's making a house call this week.  Here's hoping I'm doing something wrong and she can fix it.