Bald and Bare

My husband is bald.

He's been bald before. And he's a good looking bald man. But people who know him ask quiet questions.

They know things have changed around here, in regards to the tumors. They know we're on higher alert, that we still haven't balanced seizure medications. That we're getting more frequent MRIs and now EEGs and that things are not as constant and simple as they had lulled us into believing they were. Each time I think about how much time has passed, I can't help but recognize how unfathomably fortunate we've been. Seven and a half years. We've been doing the astrocytoma thing for seven and a half years. And I haven't seen M bald for seven of them.

M's hair never really grew back quite right on the radiation side. And it's been thinning rapidly over the last year or so. So M made the call to bic the lot of it- return to the cue ball aesthetic.

It works on him, the handsome devil.

But it means things. It must mean things.

No matter how shapely his skull or how bright his eyes, people wonder when they see the scar.

He's fine. He's fine. He's fine.

(Part of a panicked part of me deep in my chest wants to scream, He's NOT!, and I ignore that. Most of the time.)

He's fine.

We're cutting our Christmas in Minnesota a little short for him to make it to his next set of MRIs, to make sure he gets them before his doctor has her baby. Because you accommodate your friends like that, and M's neurology team, they're are friends.

We've known them for years. Years. And we all know that really, M is fine.

(Even if the RNs we joke with suddenly seemed stone faced and breathless when they ordered more frequent tests. That was just me seeing it, right? That wasn't real. That wasn't what was happening. That was nothing. I don't have to think about that.)

He's fine.

And let's face it, the baldness works for him. He's tall and handsome and manly and broad, his eyes are brighter when they're not competing with his receding locks. They twinkle brighter. His eyebrows seem darker, more dramatic. Sexier, even.

Baldness works on that man.

I had worried that the kids wouldn't recognize him. The toddler, anyway. I worried she'd freak out when Daddy appeared looking like a bad rendition of himself. But of course she didn't. Instead, M stormed into the kids' bedroom, and announced, "Guess what? I wouldn't let Mommy brush my hair, and look what she did!!!" Today he even helped me get them all to agree that really, they could use a trim, too.

(What's good is now they see him bald and normal. Now if the tumors are growing or back he won't have to lose his hair, and he'll look normal to them. Now if he's sick and he gets sicker and I have to tell them about how sick their daddy is, at least he'll always look like Daddy to them.)

He's fine.

I like it. He likes it. He likes that he can snuggle up under my million of blankets with me and not overheat, now that his excess heat escapes through his giant hot bald head. I like that I can warm my hands on it, as I sit up holding my kindle after the kids are asleep.

I like tracing my fingers over its topography.

But it does kind of feel like I'm losing something. This isn't like last time he was bald. This time the hair is really gone. There's no hope that maybe it will grow back. Of course it won't grow back. Thirty two year old men who go bald don't suddenly have their hair grow back.

No amount of hair clubs for men can make it grow back. And that's okay, because this time it's not chemo and radiation making it fall out. So that's okay.

M's first bald day, seven and a half years ago

M was never scared of aging. Aging is a triumph for him, his little "Fuck You" to cancer. He loves the affectations of middle age, which are more hipster-ish and honestly sexy on him than he would dare admit. Age is a triumph for this man.

(But suddenly it's not for me, because it doesn't matter if he's young or if he's old. I don't want to lose him either way. I don't want to lose him to cancer or seizures or Alzheimer's or heart disease or diabetes or anything. I don't want to lose him period, and if he gets old someday he has to die.)

He's fine. He's a fine bald man. A foine bald man.

He's my gorilla bear. Just a little less furry. He's my favorite man. He's my favorite human.

I can not panic. I can differentiate between irrational hysteria and what truly is.

(It's not hysteria if it's true. It's not hysteria if it's right.)

Still, as always, I am comforted by that little voice of panic. Because I know something true about myself- when the shit gets real, I am a rock. I am solid. I am unyielding and unbending. I take care of what has to be done. I take care of it. If the panic is there, things are okay. things aren't so bad. I have the luxury of harboring a few waves of fear.

Because M is just fine.

Drowning in the Creep

M and the kids tracking each others footprints in the snow on Thanksgiving

I love Thanksgiving. I've always loved Thanksgiving.

For Thanksgivukkuh last year, I bought my kids a wonderful book- "Rivka's First Thanksgiving." In the book, a little girl in Brooklyn learns about Thanksgiving, and convinces her orthodox Lubovitch community to celebrate the holiday.

Because as first generation immigrants to America, the story of being welcomed in and protected by a new community spoke to her.

And being immigrants fleeing religious persecution in Europe, the story spoke to her more still.

In many ways, Thanksgiving is like American Passover. You gather with your family to recreate a meal, a meal where peoples of different backgrounds came together to celebrate that they would survive. Squanto was like Moses to the Pilgrims, and Moses would have been a stranger to the Jewish slaves.

It's a lot like Passover, really. Almost uncannily. Except instead of an afikomen, you get pie for dessert.

I love Thanksgiving.

On Amazon!

Which is one reason I can't stand Christmas Creep.

For many people, Christmas is the only thing they seem to like about Thanksgiving. For many people, Thanksgiving is wonderful because it gives them permission to stop holding back in their Christmas zeal, and the minute the table is cleared after dinner it's time to ring those sleigh bells and move onward towards the real winter holiday.

Only the thing is, unlike Thanksgiving, not all Americans recognize Christmas.

Thanksgiving is wonderful to me in that it is so comprehensively American. From Turkey tamales to three sisters stew, from pumpkin crumble to persimmon pie, every corner of America is filled with people celebrating what might be a largely fictional story, but is a fundamentally hopeful one.

Christmas? Not so much.

For me, as for most non-Christian Americans, Christmas is an annual giant, exclusive party that seems to grow by a day or so every year.

And I had no idea how much more lonely it would be for me once I had interfaith children.

As you probably know, M borders on agnostic and I dabble with atheism. But we appreciate the traditions and familiarity of our respective faiths.

The historically Jewish city of Chefchaouen in Morocco-
where the Jews who built it so strongly identified with their heritage that they painted the city blue.

We always planned on celebrating Christmas and Channukah with our kids, and we've celebrated both holidays with them since the first. But the fact of the matter is, to be Jewish is to be excluded. Not just here, in the United States. Everywhere.

We, as Jews, exclude ourselves.

And in a way, I think that is what has allowed us to survive this long. As isolated strangers in non-Jewish communities, we have always excluded ourselves. Like Tevya says of the Cossacks in Anatevka, "We don't bother them, and so far, they don't bother us." Until of course, the Czar decided some bothering was due.

We carved our niches out of the communities we wandered into, and although we lived side by side, we lived separately.

Not so, in 20th and 21st century America. We managed to make ourselves seen, and heard, and somehow welcomed for the most part. We accepted the mantle of "whiteness" the civil rights movement offered us. We started seeing ourselves as Americans as well as Jews. Something we certainly never did in Russia or Morocco.

The blue streets of Chefchaouen

But part of the appeal of the United States, for all immigrants, has been that it is a country without a single faith. That it is a country without a unifying culture. That it was and has always been based on ideals of freedom from religious persecution.

And the fact is, to be so thoroughly surrounded by a single holiday that you do not celebrate is smothering. To be vilified as being a "Scrooge" or a "Humbug" for feeling no love for a holiday that means nothing to you is a form of duress. It is a culture that says, "Pretend you believe this, or you are not one of us."

For most of my life, that feeling of isolation and rejection for not trimming trees or writing letters to Santa was something that felt natural to me. That felt like as much a part of my heritage as the bland, mindless way the Shabbat bruchot came to my lips as a child waiting for Friday night dinner.

It is not the same now. Now, I have children. Children who love Christmas, and whose love of Christmas hurts me.

I feel petty and unkind and shallow saying so, but it's true. That I am and must be complicit in their affection for Christmas only makes it worse.

I have little love for Jesus, in whose name countless atrocities have been committed against my ancestors. In whose name, as a child, my best friend sobbed and begged me to convert, because she didn't want to go to Heaven if she knew I was going to Hell. I have made my peace with Jesus, for the most part, who I think was probably a man trying to do some good, if he existed, which I can never know.

But I don't understand what American culture has done to his birthday. And in his name.

I don't understand how Santa Claus came to be, or why I must lie to my children, in however sheltered terms, rather than saying what I know is true. But I continue to lie to them. I tell them that he is real to them, because they have somebody who loves them and wants to make him real. The way fairies are real to some people, when somebody loves them and wants to make fairies real to them.

It's a pretty lie. It's one that I had hoped wouldn't hurt me to tell. But it does. Because I cannot make Santa real. I can only drive this wedge further between my children and myself, isolating myself more and more from their understanding of the world and their understanding of mine.

Our friends, Santa and Mrs. Claus with their favorite elf, visiting our children several Christmases ago.
Friends who love our kids enough to make Santa real for them.

For me, and for most Jews, to be Jewish is to be excluded. It is to be separate, to use our own favorite turn of phrase, to be "Chosen."

Part of what we choose is this otherness, and I wonder if my sister wasn't really right when she warned me about having children with a Lutheran.

"Can your children really be Jewish, if they grow up in a house that has a Christmas tree?"

I said I didn't care, but I know now that I do. I care very much. I want them to feel what I feel about my heritage, about my ancestry and my history. Their ancestry and history.

I want them to learn that part of being Jewish is being isolated from the larger community. That as welcome as we may think we are, we are always waiting for the tides to turn. I want them to understand that on Thanksgiving we are all American, and we are proud, and we are humble, and we are unified. But on Passover we remember that in every generation there comes somebody who would try to destroy us. That in every generation there is a genocide, and we have made it to this day by seeing the tides when they turn, and remembering who we are and where we came from.

When, in October, my children squeal with delight at the sight of Christmas lights in a store, I feel more lonely than ever in my life. My children, these people I made who shared my blood and my body, and will always share my history and my life, my children have been anxious for Christmas to come since that first sparkly snowman made his appearance on the Costco floor.

They gush about Christmas. They tell me what they want, they tell me they want to see Santa, they tell me they want to make Christmas cards and have Christmas stockings and a Christmas tree.

As they have had every year.

And I ask them, "What about Channukah? What about lighting the menorah each night? What about singing Channukah songs with me and Poppa?"

For them it's an afterthought. Something nice that will happen as well as Christmas. Not their isolated holiday warmth, not the oasis of familiarity in a Christmas dessert, where costume clad volunteers on the public train stare with fear in their eyes when someone responds to their, "Merry Christmas!" with "Chag samayach to you!"

They learn that fear young. "Did you know?" an eight year old friend asked me, her face pale and numb, as we arranged Barbie shoe filled traps for each other on her bedroom floor, a la Home Alone, by the light of the garlands strung down her bannister. I was too ashamed to speak, now part of the mechanism that had built and shattered what would become a formative childhood experience.

It wasn't that I didn't believe, it's that I knew the truth. And the truth was my parents kindly but sadly explaining that I should not tell other children the truth. That I must distance myself to protect them. That my distance was essential to their happiness.

As a child, I resented Christmas, and I could not escape it. I could not escape singing Christmas songs at my public school. I could not escape the constant talk of what Santa would bring to other children, and not to me. I could not escape the ornaments and tinsel in every grocery store, on the light poles downtown, on the bulletin board outside the Principal's office. I could not escape the trees, covered in candy canes or tiny toys, standing resplendent in all my friends' homes- shrinelike on their velvet skirts, revered in their untouchable beauty. I could not escape the Christmas stories on my television, every beloved character celebrating the very holiday that excluded me, until I couldn't bear any longer to watch even the Muppets imply that I, like Scrooge, was a "humbug."

For me, Channukah became meaningful not because of the story, a military holiday as opposed to a religious one. For me, Channukah was meaningful because after all the loneliness and sadness of my friends slowly distancing themselves from me, I found myself surrounded by the familiar songs and faces and foods of my people. My holiday. My little light in the winter dark.

Now, as always, my friends are beginning to shrink away. Earlier and earlier every year, with facebook quizzes about "Holiday Movies" based on "It's A Wonderful Life" and "Miracle of 34th Street," as though by erasing the word "Christmas" from their enthusiasm I can join in, I can pretend that my own experience includes Santa Claus and Christmas Miracles, as if just by being American I must be part of this, as though despite making myself visible as someone "other," I am at fault for neglecting my cultural duty to watch the Greatest (Christmas) Films Of All Time.

I find myself less patient with my inability to participate. I find myself feeling like a liar more and more, even as I tell my children that Santa is only real if somebody makes him real for you.

"I can't make Santa real for you," I say, and this is also a lie. I am complicit. I am the one who fills the stockings when their backs are turned. I am the one who lies by omission, by saying that Santa is real for anyone, ever, when Santa is a fiction who brings comfort to the majority of our neighbors, but only ever hurt me. Only ever guilted me into prolonging the moment when my friends would be crushed by the destruction of their happy fantasies.

The truth is that I don't want my kids to believe in Santa. Not because I don't think they can't really be Jewish on a fundamental level if they have a Christmas tree in the house. I think that it's hard to really empathize, to really understand who their ancestors were and what they faced if they don't understand what it is to be other. To be excluded and to understand that purposeful exclusion is a threat, but at the same time that self imposed exclusion can be safety.

Jewish men praying under guard in a Polish shtetl in 1940

Last month, the children cheered when they saw a Christmas tree in Costco, and I ignored it, stony faced.

"Is Christmas soon?" they asked, eagerly.

"No, first comes Thanksgiving. And then Channukah," I said.

"So why are there Christmas trees?"

It was a simple question, and I answered it simply.

"Christmas Creep."

"What's Christmas Creep?"

"Christmas Creep is when people are so excited about Christmas, they forget there are other holidays that other people celebrate. Including Thanksgiving, which is next."

"Why do they forget there are other holidays?"

"Because they don't need to remember, sweetie," I said, sighing, pushing my cart into the cold parking lot. Pushing it past other carts laden with trees and lawn reindeer and mountains of tinsel.

They don't need to remember, but I do. Jews do. "Never forget," and all of that.

The truth is that Christmas Creep isn't just about forgetting other holidays, it's about forgetting other people. And worse than that, Christmas Creep is about forgetting Christmas as well.

My husband, the Lutheran, hates Christmas Creep more than I do. For me, it's a familiar angst. For him? It's a reminder of what is constantly being lost for people who DO celebrate that particular holiday.

M tells me that he didn't really learn what Christmas was about until he was in college. An adult. Until he left home, Christmas was about getting. Now, he says, Christmas is about family, and love. Seeing his cousins in Minnesota, who he sees so painfully rarely. Seeing his aunts and uncles and remaining grandparents. Meeting babies and seeing how absurdly much children have grown. Physically being with the people you love.

But it's hard to explain that to a child through the haze of tinsel and and the twinkling of fairy lights.

Just under half of M's family (half of them)- an eight hour drive away

M can't stand the Christmas Creep, not because it makes him feel alienated from the world around him, but because it makes him resent the waves upon waves of distraction from what he actually cares about.

Neither of us are likely to jump onto the Holiday Fever bandwagon before we've thoroughly enjoyed our Thanksgiving weekends. Neither of us are eager to give up time with our families to buy things we don't necessarily need for a holiday we feel, in the case of both Christmas and Channukah, shouldn't be about presents anyway.

Despite this, M loves Christmas. He loves putting on his cheezy Christmas sweater, drinking quarts of eggnog with a grin on his face, hanging a wreath on our front door. He loves the lights and the stockings, the tree and A Muppet Christmas Carol. He loves gingerbread houses and red and green m&ms on Christmas morning.

I've always known Christmas was important to M, and it never bothered me. It still doesn't. I love seeing him happy, and I love making him happy. I go to church every year with his parents, smile and shake hands with the pastor, sing along through all the carols. The first date I ever took him on was after he came back from spending Christmas with his family. I drove him up to Sauganash, and parked the car, and walked hand in hand with him in the snow through a magical world of Christmas lights brighter and more complex than any in the town where I grew up.

And it was beautiful and romantic, even to me, somebody who doesn't care about Christmas.

I understand that there is something special about Christmas for people who do care, and part of me has always been dedicated to helping M create that magic with his children. Who also happen to be my children.

And M has been equally understanding when it comes to my need to pass along traditions to my children. He has agreed with me on the importance of a Jewish preschool, not for religious indoctrination, but for the introduction of a long and complex history we both want them to know. He has been at every family seder, cracking jokes about gefilte fish and still eating it. He has learned the Shabbat bruchot, and sings them with more enthusiasm than I did at our children's age. And it has also, in a way, pained him. And I know that.

Some of M's relatives like to wear shirts with slogans like, "Put the Christ back in Christmas." And both of us are all for that. Because it's honest. Because Christmas isn't "the reason for the season," but Jesus is the fundamental reason for Christmas. And the more we as a society get back to remembering that, the less Christmas Creep we'll have. The less we'll be constantly bombarded by messages to buy buy buy buy buy, and the less I will feel like I have to protect my children, not just from losing their sense of their cultural identity, but from losing ANY sense of cultural identity.

M and the girls watching football before Thanksgiving dinner, while Grandmommy and I cook and chat,
and my sister and Poppa take turns napping away what ails them

I know that M often feels that he has no cultural identity. That compared to me, a person from a self-excluded group, a person who deeply feels tied to history and culture that make me unique from society at large, he occasionally feels bland. Empty. As though his own culture has nothing to offer but Hallmark and Black Friday.

He struggles with putting to words what his culture is, besides being White America. He is like a fish who cannot see the water, having lived it and breathed it beyond the limits of his own existence. And he is learning, but it does not help him define it.

It does not help him explain to his children, my children, what is and is not meaningful or important, what is or is not a privilege or an identity, what is and is not good or bad or empty fluff.

Nobody seems to believe that Christmas is about presents except children. But they're picking it up somewhere.

So what is it? Is it about Jesus? Is it about family, about sharing the warmth of love and joy and familiarity in the coldest months? Or is it about casting divisions between "us" and "them"?

I don't know. I may never know. I don't even know that I want to know. Knowing the meaning of Christmas might be a little too close for comfort to me. Having a true understanding of what Christmas is and what it means puts me so much closer to its epicenter than merely hanging stockings over my mantle, and lying to my children about the reality of fictional characters who brings gifts bought with my energy, my money, and my love.

I don't want to sympathize with Christmas Creep, because I want to be able to focus on the things that matter to me, and I cannot emphasize enough- that is not Christmas.

To me, Thanksgiving opens the winter, with welcoming arms and the promise that the winter will pass, that I will spend cold months ahead in the warm embrace of my friends and family, that the food will be abundant and the cheer even more so, despite the short days and the bitter cold.

To me, Channukah is a week when I reflect on winters past. When I gather with my family and share stories so old they've become legend; from the revolt of the Maccabees to one time my four year old sister forgot her lines in our family Channukah play and announced to our "audience" that her song was rewinding.

To me, Passover is about winter ending and spring beginning, with a warning. We survived another winter. Another spring has come. And again we must remember that next year might be different.

And in the middle there lies Christmas.

I look forward to the days spent in Minnesota, surrounded by M's family, who have become my family. I look forward to hugs and cookies and catching up on news. I look forward to laughing at M's aunt's inappropriate jokes, and drinking beers with his cousin on the farm. I look forward to seeing my children get to know their cousins, in whatever limited capacity they can with so little exposure to each other, and hoping that someday they will feel the bond of love and family for these people who share their history, their heritage, their genes, and their traditions.

Chicago's Sauganash neighborhood, where I took M for our first New Year's Eve together. To look at the Christmas lights.

I do not look forward to church, but I go because I am part of this family and I want my children to know that and to be as well.

I do not look forward to the endless Christmas trees on the street and non-stop Christmas Pop on the radio. I do not look forward to people I love asking my children about Santa, and building my complicity every time I keep my mouth closed in a smile.

I cannot look forward to Christmas, because before I am even ready to approach it, it's here. Christmas Creeping its way under my skin and fatiguing me before I can acknowledge it. By the time Thanksgiving groceries are bought, I am done with Christmas.

But I'm not done. I'm never done. I'm an American citizen, and each year Christmas is more American than apple pie for Thanksgiving dessert.

And now I am less done than ever, because each day my children see a new toy in a catalogue, and they want Santa to bring it to them, so I set them to the task of simply circling toys I know I have no intention of buying.

That I neither want to buy nor can afford.

That are as much the "reason for the season" as the yet unpacked suitcases from our Thanksgiving trip littering the foyer.

I am learning through my children what it is to be included in this holiday, and I fear it means I cannot teach them the benefits of the inclusion of exclusion.

I am teaching them the importance of family, and of sharing traditions with family, even if that isn't the lessons they learn about Christmas.

I am teaching them the very things about Christmas I despise each time I offer a Santa platitude. Yet I offer Santa platitudes, despite each word breaking my heart as it tears my children farther from me.

As my Lutheran husband would smile and shrug and say, "Diyenu."

M and RH last Passover

This is otherness in America. But what good is my exclusion, what good is my culture and my heritage and the relative safety of my isolated rhetorical shtetl, if my daughters are on the outside, while I am in?

If I can't embrace my otherness, what is left of my heritage for me to hang onto?

Is a Jew without her tribe a Jew any longer? Or am I something else? Something lost, and sad, grasping for an identity that can never be this version of American which only comes when the days shorten; or something hard, and cold, unable to find the warmth of any tradition when it's all obscured by the never ending "Holiday Sale" that sucks the meaning out of anything joyful?

If not even my children understand what it is to wander, but not be lost in the fold of their family, I am utterly alone.

And there will be precious little left to be thankful for in Novembers to come.

I will be a child again, standing back from a tree covered in toys I cannot touch, resenting it for bringing me no joy when the children around me gasp in awe.

Only those are my children.

And if they cannot know what it is to stand outside of Christmas and never come close enough to touch it, I fear they can never know me. And without my children to keep me warm, to stand by my side and hold my hands, it is a long, cold winter indeed.

Or, it's not.

Or, it's exactly what I agreed to a decade ago, when I felt myself falling in love with a man I took to look at Christmas lights for New Year's Eve. When I braced myself to feel exasperation and frustration on a cold walk on the last day of the year, and instead found pure delight and peace by looking at the smile on his face as he took in the displays.

I watched him grinning at the lights, and he said, "Thank you."

Because he knew I hadn't expected to go on that date to make me happy, but had done it for him. And he knew that seeing him happy was all I wanted in the first place, and getting that, I was also happy.

He and I agree that the best part of any gift giving holiday, Christmas or Channukah or any old birthday, is the moment when somebody you love opens the gifts and their face lights up. They are transported in their joy, and it is that joy, not the contents of the box, that you have given them.

It's a joy that knows how much you care. A joy that knows how deeply you love.

I love my children. I want them to experience joys I never did.

Our menorah, over our stockings and nativity scene

But it comes at a cost for me. It comes at the cost of becoming complicit in a lie that hurt me. In a culture that rejected me and laughed at me for being rejected. It comes at the cost of being part of the mechanism that perpetuates my own otherness, even, yes, from my own children.

It is a cost I accepted long before I had to pay. I still accept it. I am still learning to love Christmas, not for what it means but for what comes from it. Time with a family that is now my family, the beautiful joy of people whose love means everything to me, pretty lights in a dark, quiet street.

But I can only stretch so far.

The growing "season" overwhelms everything, including perspective.

I do have to remember- I do not have the luxury of forgetting other holidays, other people.

I see the water.

Dignity versus Nobility

It's been a long couple days in front of my computer.

Brittany Maynard chose to end her life on Saturday, surrounded by her loved ones. And as a result, I can't get away from the story.

It's all over facebook (although my friends and acquaintances thankfully have enough tact not to post it directly to my wall). It's all over the radio. It feels like it's everywhere.

A woman with the same brain cancer as my husband, three five years older than he was when he was diagnosed, and three years younger than he is now, ended her life in order to avoid suffering. When I say the same cancer, I mean THE SAME CANCER. The same size tumor. The same location. The same stage.

I've been cautious not to form much of an opinion. I've been careful to remind myself that she is not me, that she is not M, and that she was experiencing grief and fear and the desire to live a beautiful life in her own individual way.

I respect her choice, but as much as I sympathized with her and pitied her and wished for her to control her destiny to the best of her ability, it still enrages me now that she's gone. (Yes, I know, classic stages of grief.)

And here is why- it comes down to the word dignity.

To die with dignity.

I believe it is every person's right. But that word means many things.

M wanted, when he learned his diagnosis (but not his prognosis, mind you), to die with dignity. For him, that meant finding a medical trial to participate in. For him, that meant giving his death, not only his life, meaning.

He said over and over to me, he did not want to be defined by his brain cancer. He didn't want memorial funds in his name to raise funds for brain cancer research. He didn't want grey ribbons on all his friends' car bumpers, or 10Ks, or telethons. He wanted to be remembered for what he did, not what the cancer did to him.

He wanted to be remembered for his work on buildings that would stand for generations. He wanted to be remembered for his sense of humor and his brilliance. He didn't want to be forever associated with a disease. He didn't want to be Lou Gehrig.

He wanted to be himself, in control of himself. Just as Brittany Maynard did.

Only his idea of dying with dignity wasn't completing a bucket list of places to visit and things to see. It was saving other people. It was giving his death to other people, in the form of a medical trial. Of using his death to help understand the cancer, and perhaps keep other people from experiencing the same fate.

This contraption held his head down to a table for treatment.
The marks are for aiming the beams of radiation directly at the tumor.

At the time, the word that came to mind for me was noble. I thought he was unbearably noble. But he didn't see it that way.

For him, it was about dignity. About standing and facing his fate and making something better of it.

In a way, Brittany Maynard did the same thing. Her way of making something better of her death was to try to ensure that all other terminally ill people in the United States have the same option- the die before living is too painful to endure.

I know what kind of pain Brittany Maynard was facing. I know it. In one of her last statements, she said her helicopter flyover of the Grand Canyon was followed by her worst seizure yet.

Seizures are no joke. I know.

But dignity isn't just making sure you avoid pain. Dignity is prioritizing your humanity over your fear.

Yes, the right to die is incredibly important. And of course I have no way of knowing what options for treatment Brittany Maynard had. I don't know if a clinical trial was a possibility for her.

And as I've said a thousand times before, I don't believe that suicide is a selfish act. That Brittany was thinking of others is obvious to me, she made sure to say she hoped her husband would remarry and have children someday. She understood that life goes on for the loved ones of a dying person.

But at twenty nine years old, less than a year younger than me, I wish I could stare her in the eyes before she made the choice NOT to undergo any sort of treatment that would effect her quality of life for those last months, and ask her, "Who are you doing this for?"

I don't know if M's trial is saving any lives. I believe it could. I truly believe it could. It was dangerous, and it was frightening, but it worked.

And if it hadn't, doctors would know going forward what not to do, and why, when another terminally ill patient came along.

So maybe Brittany Maynard died with dignity. Maybe she did.

But maybe that kind of dignity isn't enough. Maybe, for me, death should be about more than dignity. It should be about more than avoiding suffering.

It should be about what you give the world with your life and death.

The OKO Tower, currently under construction in Moscow, and one of the projects M is most proud of.

When you're young, this is a much harder question. In your twenties, what do you really have to contribute to the wealth of human knowledge and understanding and beauty?

As you age though, you give more. You can't help it- living in of itself is giving.

My heart breaks for Brittany Maynard's family. Especially for her husband, who at least got to enjoy marrying the love of his life without the shadow of this prognosis and planned death over his head.

And I know that M is not typical. That his story is profoundly unique. But when I look at him, this man who at twenty four, the day after proposing to me, was diagnosed with the same brain cancer, and has since married and had three children...

I can't help but question the information Ms. Maynard was given. I can't help but question her motives. I can't help but question whether this wasn't about dying with dignity, but making a point.

And I would scream from the mountaintops to anyone else with a stage four, inoperable glioblastoma, "You can have more than dignity! You can be NOBLE!"

Maybe it's just from watching the man I love struggle always for what is best and most right for others, but I would always choose the latter.

Someday, the time may come when M is ready to choose to die. But I know him, and I know he would only ever make that choice if he thought living, under any circumstances, would give no more to the world than it would take from it.

M and his dad watching a pig race with the kids-
seven and a quarter years after being diagnosed with terminal, inoperable brain cancer.

I hope that is an equation that other people suffering from terminal illnesses can consider.



Edit:
In response to the question- what if *I* were diagnosed with a terminal, debilitating illness?
At this point in my life, if it were in fact the same glioblastoma, I might consider planning for a Brittany Maynard-esque death with dignity. Because the process of going through personality changes that might make me angry or even abusive towards my children is something they are not yet old enough to understand. My choice would be based on my desire to cause them the least amount of trauma- leaving them with memories of me intact. Again, the equation would be that living would give no more to the world than dying would take from it. But if faced with a similar illness before I had children or once they were old enough to understand the effects of diseases of the brain, my calculation would probably be different.

Hope

Dancing with the love of my life

 This morning was much like any in my house.

I didn't get a shower. I didn't get breakfast. I stared foggily at a two year old who felt determined to scream over nothing and everything, while wrangling five year olds into ponytails and socks. I changed a diaper, I made breakfast, I made lunches, I threw on clothes and boots and snapped on three little raincoats and ushered my children out of the house and into a rainy morning to take them to school.

Then my littlest person and I climbed back into the car and began our drive home again, and in the ten minutes it took to get from point B back to point A again, I listened to the news.

Chicago has a mayoral election coming up, and for months it's been pretty obvious that Karen Lewis, the head of the Chicago Teachers Union, would be running. Only now she's not, because she is instead starting treatment for brain cancer.

So, like many mornings at my house, I blinked myself fully conscious an hour after dropping my kids off at school, made myself some food, and thought about oral chemotherapy, long diagnostic brain surgeries, radiation, and potential outcomes.

I know what Karen Lewis and her family are going through. Trying to decide what steps to take next, trying to decide how much to tell whom, what to believe, what to ignore. What to do.

In fact, this is something that's been on my mind a whole lot lately, ever since the video came out of Brittany Maynard talking about her decision to die with dignity.

Take a few minutes to watch before we move on.



That incurable, six month prognosis... that was M. Same cancer. Same stage.

The thing is, different doctors have all manner of different opinions. It's entirely possible that if she'd had M's medical team, they would have said "eighteen months," instead of six. And what would she have done then?

It's entirely possible that since she's been treated for the early stage tumor before the late stage one grew, she wasn't eligible for trials like the one that saved my husband.

I don't know.

Really, there is so much about brain cancers I don't know. There is so much about gliomas I don't know. There is so much about cancer, period, I don't know.

What I do know is that each cancer is made from the cells of the patient. Every tumor is as much a part of their body as their heart, or their kidneys, or their brains. It's just that the wrong information is making the wrong cells grow, and spread. Cancer is your own body attacking itself.

And because the cancer is part of you, it is unique. As unique as each individual person.

So every story is different.

But some things are the same. You don't want to frighten yourself or your loved ones. You don't want to believe the worst, you're afraid to believe the best. You look at days instead of years, and you begin to truly weigh the difference between quality and quantity.

Our babysitter asked me, after reading last week's post on M's cancer, what our children know.

The truth is that since early summer, M's been having minor seizures, and the girls have started noticing. It's hard not to notice. And M hates it. He hates it when they see him that way, weakened or ill. But as always, I try to be realistic.

The truth is we know so little, and this may simply be our normal now. This may be the way life is for us, with Daddy occasionally having a seizure, so the girls should know what to do.

I've told them Daddy is okay, that sometimes he has these seizures, and they might look a little scary, but not to be scared. I've told them that if Daddy starts to have one, they should come and get me. I've told them that this is why Daddy takes medicine every morning and every night, to stop the seizures.

And yes, I've told them that the seizures are because Daddy was sick. Very sick. That Daddy had a sickness called cancer, and it was in his brain, and he got lots of medicine that made him better.

"Cancer" is a word that holds some meaning for them. They've known somebody who died from cancer. They know people who have gotten better. These are things they remember. My five year old daughters are old enough to remember that sometimes cancer means you don't get better.

"But Daddy got better," I tell them.

"Daddy is just fine," I say, "but he has to take his medicine every morning and every night, because sometimes you don't get all the way better. That's why Daddy walks a little funny. That's why Daddy sometimes has seizures. But you shouldn't be scared. Daddy isn't sick anymore."

Only that's not really the truth, is it?

The truth is that when M was diagnosed, he was 24. He was so young, and so strong, and so healthy, it seemed impossible to me that he could possibly succumb to something as mundane as cancer.

And he didn't.

When he was diagnosed, and he doubted, I rolled my eyes. "Most people who get this are old," I said, in my 23 year old way. "They're in their fifties and sixties and stuff. OF COURSE they die. The chemo kills them faster than the tumors. But you won't, because you're young and strong and healthy. So long as you can beat the chemo, you can beat the cancer. And I know you can do it."

Karen Lewis is in her sixties. Ted Kennedy was in his seventies. And yes, Ted Kennedy was dead in a matter of months. And maybe, yes, it is about youth and strength.

But youth and strength come in limited supplies. My idea of what it means to be old has changed now, now that I have really crossed the threshold to adulthood, now that I have seen young and old fall to the same set of diseases, I know how naive I was.

I still don't know that I was wrong, but I know I could be.

And now M is not the strong, young, healthy man he once was. He's not twenty four and athletic, a towering Greek god of a man who promised to spend more of his life married to me than not. He's a thirty two year old father of three, tired from working a job he doesn't care for, exhausted from studying to improve his credentials, maybe even a little jaded from seven plus years of survival being the benchmark of success.

I no longer believe in the truth of words like "cured," and "remission." Those words mean one thing- "waiting."

I know that Karen Lewis is just beginning to wait. And while today I know I sound less than hopeful, there are other days that "I'm waiting for it to come back" and "I can beat it" mean the same thing.

Every day is a different story.

I told myself when M was first diagnosed that it way okay. That if he made it to those "old" years, his fifties or sixties, I would accept his death with dignity. That we should all only be so lucky.

But each day we come closer to those years, and each day I am more certain that his death will devastate me just as much, even more, beyond repair. And there are nights that he works late, or hits the library to study before coming home, when I imagine.

I imagine that me feeding the children dinner without him, putting the children to bed without him, somehow smiling and laughing and talking with our daughters about their days is normal. That it is what I do, alone.

That it is as routine as making them breakfast and lunch and getting them into their coats.

Some days I imagine that M will come to the point where his doctors tell him it's too late, that he has no hope, and he can choose between palliative care or none at all. I imagine him making the choice to bow out of life gracefully, and what I would do- how I would tell our children their father would soon be gone.

I have a friend who's father died when she was seven years old. She recently told me how different her understanding of relationships is from another friend, who's father abandoned her family when she was the same age. How in one instance the child never doubted the love her father had for her. How in the other, the child grew up constantly doubting her value, her ability to be loved, whether she deserved to be loved at all.

I don't want my husband to die. I know it goes without saying, but I must say it. I do not want him to die.

But cancer doesn't care. Cancer doesn't care how many people love you, or how many people you help, or how many people depend on you.

So when the news comes on and I cry in the car, and the rain masks the tears on my face as I drop my children off at school, it is still a morning like many others at my house.

The truth about life is that it can end at any moment, but most of us never notice the sword of Damocles hanging over our heads. Most of us ignore how fleeting and fragile our moments are.

I try to be one of them, but I don't always have the luxury. Not when I'm spending my days filling out the cancer binder with new dates and new seizures.  Not when I'm reminding myself that I can handle bedtimes alone. Not when I hear about another person who has joined the exclusive club of the neuro-oncology corner of the cancer center.

Some days I must face what I don't want to face- my life is not normal. As normal as it might appear on the outside, volunteering for the preschool, making dinners, endless laundering... it is never going to be normal.

Because I am always balancing my need for honesty and my need for optimism, and when my children ask me, "Is Daddy feeling sick?" I need to decide how much is too much for a five year old to understand? How much is too much to expect of them?

To our children, M is old. He is as old as God, and as powerful, and as immortal.

And I, their mother, will someday be tasked with teaching them that he is none of those things.

That your fifties or sixties is still too young. That he is no more than human, and that yes, someday he will die.

Not when he's older than great-grandmommy, probably not. Probably not even older than Poppa.

Probably.

I can hope. God, I can hope. I can believe in the twenty five and a half years he promised me. I can believe in that.

But on days when another person is ill, and I am faced with questions like, "Will they get better?"

I would give anything to be able to say 'yes.'

The Routines of Bravery

On Monday, M and I went in for his regularly scheduled MRI and checkup with his neurooncology team.

In many ways, it was as routine as these visits can ever be. We talked more with M's doctor about her pregnancy than we did about M's condition. It's hard to explain, but sometimes you can't keep yourself from becoming friends in situations to like these. While we might not see M's medical team for dinners or playdates, we look forward to catching up on our lives together, to bumping into M's RN at synagogue, to squealing in delight at the not at all surprising news of new babies. We warned her, when she became M's doctor, she would get pregnant. We just have that effect on our physicians.

In many ways, it was anything but routine. Routine is what you do every day. It's dragging yourself out of bed to make breakfast and lunch and go to work or drive kids to school. It's brushing your teeth, and dodging calls from telemarketers and GOP surveys. It's rolling your eyes every time a bit of spam gets into your inbox after you've flagged it three times. It's that beautiful moment when you lay down on the bed and all at once your whole body tells you how hard it's worked today, and how incredibly amazingly blissfully pleasant it is to be horizontal.

It should never be routine to sit biting your nails for hours in the early morning while someone you love is getting sophisticated images taken of tumors that you can't help but worry are growing. Yet letting it become routine is a comfort. Telling yourself that one scan is no different than the dozens that came before makes the anxiety easier to bear. Telling yourself that you can adjust to anything, that anything can become normal and surviveable and commonplace is a necessity for existing beyond a trauma. Like astrocytoma.

This is life. And it is dreadful. And it is terrifying.
And it is so beautiful and wondrous and magnificent that every day we accept the terrors that come with continuing to live, regardless of what they may be.

For me, this week, the terror of "what if" was eclipsed by the other daily miseries I'd piled upon myself. My children brought home their own little nightmare, or rather hundreds of them, in the form of lice. Mice moved into my house. Our dishwasher broke. Our planned number of houseguests doubled as all air traffic in the area was downed. My doctor switched my medication to something that turned me into a comatose zombie. I planned and executed my twins' fifth birthday party. And for a swathe of it I parented solo while M took a much needed vacation with friends. And somewhere in there, I gave myself a little gift. The total hyperextension of my emotional energy. I could not find it in myself to worry until I was sitting in the waiting room, filling out the routine pre-MRI paperwork.

For me, this week, the beauty was watching my five year daughters exchange gifts they'd chosen for each other. It was watching as they let their two year old sister help them open their presents. It was five hours free to re-rearrange my kitchen from the affections of weeks of houseguests. It was hugs from little humans so sweet I didn't even care they might infect me with their pestilence. It was my mother-in-law beaming with motherly pride when she saw my first book, and my mother swapping apples with her grandchildren at the orchard, and the way M's belly presses against my back just right when he snuggles against me in bed, supporting my spine and warming me to my bones, and feeling his dimple in the air when he smiles in the dark.

These are not easy things to put to words. And nowhere is it harder to find a way than in the neurooncology ward.

I know how dreadful it is to be there. I know especially how dreadful it is to be new there. I remember our first visits so vividly, the fear and determination and guilt. The aura of hopelessness that surrounds some people, and the desire to simply look away- to not be contaminated.

When our visits began to feel routine, a woman named Shaneesha made them feel joyous. She knew us by name, she delighted in the growth of M's hair, in asking me about wedding planning, then honeymoon photos, and then pregnancy news. She was a patient services representative, and I looked forward to seeing her, to wasting the time of people in line behind us as I told her how ultrasounds had gone, or what we would do in New Zealand. Her last week at that job, we brought the twins in for the first time. She leapt over her desk, squealing with delight, and ran to them, and hugged them.

She made that terrifying place a home. And when she left, I decided I would try to do the same for another family just embarking on their brain cancer story.

Whenever we're at the cancer center, I talk loudly. I joke. I laugh. I talk to people, and smile.

So on Monday M and I made a minor scene, laughing and joking and smiling in the waiting room after hours of anxiety and MRIs, surrounded by quiet, fearful faces, and oxygen tanks on dollies, and colorful scarves and stubbly new hair. And when it was done we took the elevator down again from the top floor.

We shared the elevator with two people. A mother, steering a wheelchair in which her teenaged daughter sat.

Her daughter was bald, with a mostly healed scar running across her scalp. I'd guess as much as three months had passed since her surgery.

I recognized the swelling in her face, she was taking steroids, which meant she was probably starting radiation. Her eyebrows told me her chemotherapy was probably oral, as M's had been. Her bald head the result of the surgery and the radiation, rather than an IV.

The girl sat in her chair with dark, intelligent eyes forward. She did not look as M and I laughed our way onto the elevator. With M's hat on, with his head a full four feet above hers, she would never have seen the scar on his head that so closely matched hers.

She did not look at me, but I knew the look in her eyes. Directionless anger, mingled with hopeless fear, and the fear of hope.

Her mother smiled cautiously, and I knew her as well. Determinedly optimistic. Keeping a brave face. Brave out of necessity. Terrified, and helpless, with nothing to offer but love and support as she walked through this new world.

The girl clutched a cane covered in fluorescent patterns, and I remembered M's own cane. How much he hated it, but how as a man he could accept a cane as an accessory- we talked about getting him one with a carved snake or lion's head for a handle. For a teenaged girl, it's a much more difficult affectation, and I was impressed with her creativity.

"Is that washi tape?" I asked.
"Yes!" her mother said. She beamed at me. "We're going to change it, though. She says it's too bright for fall."
The girl rolled her eyes, and I saw the human inside her, the constantly embarrassed teenaged girl. I smiled at the mother.
"Totally. Are you thinking about something more Halloween-y? Skulls and crossbones or something?"
I hoped maybe the girl would smirk. I thought skulls were delightfully subversive.

Her mother gave me a look that broke my heart. It wasn't admonition, or humor, or solidarity. It was gratitude.

The elevator doors opened, and more people came in. People who weren't traveling through the world of neurooncology. Our conversation ceased.

Seven years, three months, and six days ago

But I stared at the girl, and her mother. I wanted so badly to speak, to say, "I know what you're going through," even if I don't.

"This is my husband," I wanted to say. "He was diagnosed with a stage four glioblastoma seven years ago."

I knew the other passengers, the ones from lower floors, they would be mortified. But I didn't want to embarrass the teenaged girl. Not in that way.

"He was diagnosed when he was 24," I wanted to say. "We'd been engaged for less than a day."

"I know how terrifying it is be young and have cancer."

"You're not defined by this, unless you want to be. And either is fine, so long as you make the most of the life you have. It can still be filled with happiness."

"We have three children now. Our twins just turned five. They're five years old, and we didn't conceive them until after a year of chemotherapy was over."

"It's going to be okay."

But I couldn't say any of those things.

I wanted to give the mother my card, link her to my blog, hope she would stumble on a post about M's cancer and feel a little more hope. Show her how unfathomably normal brain cancer can become. How the brave face is a comfortable part of the routine, and she's already halfway there.

I wanted to touch the girl. Just lay my hand on her shoulder. I know how people must avoid her gaze. Wheelchair bound, bald, and doomed, she must feel a pariah.

I do not know that girl's story, but I know by now she knows the language of brain cancer and its treatment. I know phrases like "GBM" and "clinical trials" are part of her vocabulary.

I wanted to tell her how many people, older, sicker people, live for years with late stage malignancies in their brains. How easy it is to find them on the internet, if you can get over your fear of the other stories you might find as well.

I wanted to tell her life is brutal and cold and cruel, and it is unfathomably beautiful, and generous, and good. And that's not a contradiction, it's a fact. And once you accept that in addition to the terror and the grief and the bitter unfairness of it, there is still so much to take away. So much to revel in. Especially when you know how fleeting and ephemeral it is in every aspect.

Instead I walked to the car.

M sighed and squeezed my hand. "I wanted to take off my hat," he said.

That was all.

But that brief sentence said so much more. It said, "I know how hard it is for you to see people you might be able to reach and help, in some other set of circumstances, and know it's probably best to do nothing. I know how much that girl got to you, how you felt for her and pitied her and and didn't pity her, and how complicated all those feelings are. I know how much you wanted to tell her mom it would be okay, and that being brave is so, so important, and that her daughter knows it and loves her and will never find the words to say how much it means to her that the people taking care of her stay so strong. And I feel it too."

That's why I fell in love so hard with that big, goofy, brilliant man. Because he knows me, and he shares the parts of me that make me feel the most human. And in his frequent moments of compassion and tenderness, I am humbled that he loves me.

I watched my husband wrestle with the emotions of empathy for a stranger, and loved him more. I knew the more I loved him, the more I needed our trips to stay routine. And I knew he understood they could not be forever. And my heart broke for him, a man living under a question mark. And his bravery only made me love him more. And so on.

I know that someday, one of our routine trips to the neurooncology suite of the cancer center, to the gleaming top floor, won't be smiles and hugs, pregnancy news and baby photos, loud jokes and silent solidarity.

One day, someday, probably, one of our routine trips is going to end in an elevator going down, and we won't have jokes to share. We will have hopeless fear, and directionless anger, and I will keep my back straight and smile casually and speak as though I don't feel them, because I will be the one being brave. I will be the one being strong, offering my unfailing support, again.

I will have to make different choices than seven years ago, when I had the luxury of blind faith that all would work out for us, the young, the romantic, the immortal.

Seven years, three months, and two days is a long time to live under a weight that turns the cancer clinic into a routine.

It's the span of my adulthood.
It's the blink of an eye.

I'm planning to bring M's doctor a baby gift when we next return, early this time, to ensure we see her before the baby arrives. The sort of hand crafted gift I give my dear friends. The dear friends who have seen you through the hardest times and always greet you with a smile, as though the hard times will never come again. But they will. We all know they will.

I will never be ready.

I am always ready.

I live in simultaneous hope and fear of the day I know exactly what to say to make a scared teenaged girl smile.

The Best I Have to Offer

My favorite small humans

Tomorrow is M's birthday. We're going on a date, and that means tonight we're having a little family party.

The girls planned it.

That is why we're having a strawberry cake with chocolate ice cream, and the cake will be decorated with pictures of the whole family standing under a rainbow.

Yes, I'll post pictures.

That's why I'm still unshowered and my house is a mess. Because the priority right now is birthday.

Wrapping presents. Baking cake. Mixing frosting. Making ice cream.

And yes, picking flowers. And making a giant freaking mess.

I always feel bad about the way my home looks. Always. Because my home is always a disaster zone. Take the dining room right now- there are dress ups under the easel, there's laundry on the rack that's been dry and ready to hang up for three days. There's a mountain of coloring books and picture books under the toy table. The dining room table still has breakfast dishes, and craft supplies, and random crap all over it. My desk is a an organizational nightmare. There are random trucks and clown shoes and neck pillows scattered on the floor. There's dryer sheets and bean bags and a puppy in a baby carrier just hanging around underfoot.

That's just one room. And barely the tip of the iceberg.

That laundry has been there since Thursday.

I tried to clean it last weekend, so that a professional housecleaner could come to my home and do the deep cleaning.

She deemed it uncleanable and gave me my money back.

I am constantly embarrassed by my home. I go to other family's homes and I see their floors. Their carpets, and I see their spotless countertops, and their little rows of matching shoes... and I feel ashamed and incompetent.

That's how I feel most days.

But there's one person in this world who always makes me feel better about my home.

I've never seen her home. I've never seen her family. But she's in my home twice a week, every week, and she knows when I make some pathetic excuse about how busy we've been, it's nonsense. This is just how we live.

And that person is RH's physical therapist.

You might recall RH started physical therapy about a year and a half ago to help her compensate for a possible spinal cord tether. Since then, two times a week, this woman comes into my home and plays with my children. She takes all three of them to the yard so I can take a shower. She plays games with them, and she compliments them.

And before she goes, she compliments me.

I am not the best parent in the world. Despite what my husband and kids say, I know I'm not. I know there are parents out there who make more nutritious meals for their kids, every day, from scratch, and at least once a week my kids have veggie corn dogs or fake chicken nuggets courtesy of Morningstar Farms, smothered in ketchup that's 99% corn syrup.

I know there are parents out there who keep their homes clean. Like, REALY clean. Who have EVER wiped down the baseboards. Who go through the house putting away toys once the kids are in bed. Who never leave dishes "to soak" in the kitchen sink overnight.

I know there are parents out there who are more engaged than me. Who spend all day homeschooling, or unschooling, or going on adventures. Who ration out screen time carefully. Not like me, who uses Disney Princess movies that I despise as a nearly daily opportunity to brush my teeth without being interrupted.

I know there are parents who get out of bed before the kid so they can get in an uninterrupted workout routine, whereas I stay under my covers until the very last moment it's humanly possible.

I know I'm not the best mom out there.

This is one of DD's "collections." You can find them in drawers, corners, baskets,
and hats all over the house. Only the flowers don't look so good anymore.

I know that today I've already threatened my kid with a spanking for screaming and crying and ignoring me when I tried to talk to her about headbutting her sister so hard in the face that it gave her a nosebleed. I know that today I ignored the fact that my toddler was wearing "princess shoes" before "princess shoe time" because it was the first time all day she's stopped yelling about anything and everything, even though our downstairs neighbors have more than reached their limits when it comes to the constant noise of three small children above them. I know that I've got a pee soaked cloth diaper draped over the edge of a diaper pail with no bag in it because I'm not going to risk waking a sleeping toddler just in the name of sanitation.

I know I'm dirty, and exhausted, and I smell like days old migraine sweats and somebody else's piss, and in a few minutes I'll take the world's fastest shower so I can finish baking a fresh-from-scratch strawberry birthday cake and write "Happy Birthday Daddy" on it.

But an hour and a half ago, when RH's physical therapist left my home, she stopped to talk to me as she does every Monday and Wednesday.

"RH is doing so well," she says.

"And SI and DD are so smart and so polite," she says.

"And they're so good with her. They're such good big sisters," she says.

"I don't know how you do it. You must do a lot of reading," she says. "Your girls are so sweet. I'm so impressed with how you deal with the temper tantrums. All the talk about choices and talking them through what they did. I tell my sister how good you are with that kind of stuff."

And I am flabbergasted that she says these things. I cannot imagine that she could mean them. This sweet woman, with two kids of her own- also four and two. She thinks I'm doing something right.

This is the woman who, one particularly rough day, SI greeted by announcing, "Mommy THREW DD onto the floor!" Which isn't what happened, but it had JUST happened. And I was sitting on the floor, hugging DD and telling her I'm sorry she fell when I yanked her out of her seat, but she needed to use TWO HANDS when she grabbed for a full cup of milk and I needed her to move instead of freezing so I could get to it before all the mess all over the dining room was soaked in milk. And while I panicked that now a state child welfare worker was going to have to report me for potentially abusing my child, she looked at me and said, "Would you like me to take the kids outside so you can have breakfast with a little quiet?"

I'm a mom who snaps more than I'd like to. I get angry, and I get frustrated, and I'm constantly outnumbered. Outnumbered by three kids who are all going through growth spurts and won't eat cheddar cheese if they know there's gouda in the house, and hate mangoes until all they want to eat is mangoes, and trash every room the moment I've finished making it livable again, and no matter what I do I can't keep up with them.

But I'm lucky. Because twice a week, another mom who's constantly outnumbered and exhausted and can't keep up with her kids either comes into my home and tells me I'm doing a good job.

Part of me hopes RH needs twice weekly physical therapy for the rest of her childhood, so I'll always have that twice weekly moment of reassurance.

Part of me feels intensely guilty for my gratitude that this woman has no choice but to come and relieve me for an hour twice a week of the constant attention of my own kids.

My little chaos machines

Today we're baking a cake, from scratch, and I can do that. I can do these fun things, and take pictures, and laugh, and have a great time with my kids.

I can help them wrap presents and I can enjoy this time with them, and I can make a gourmet freakin' dinner for M's birthday- grilled tuna steak with tequila salsa for him, quinoa garlic patties for the rest of us, a spinach strawberry salad for us salad eating adults, and curry roasted cauliflower for everyone. I can acknowledge I'll be cleaning up those dishes for another three days. I can acknowledge that while the cake cools, the children will be trashing the living room.

I know it's coming.

I know what my life looks like, and what it looks like is chaos. These are my priorities.

And although I'm ashamed, constantly, of the results of those priorities when it comes to my shabby house, my monstrous dust bunnies, my perpetually nearly-not-dying house plants and the random used bandaid that turns up in the middle of the floor, I'm not ashamed of my choices.

I'm happy with them, because they are the choices that make me happy. Rather than force myself to feel the constant frustration of my children's enthusiastic mess, I just let them live in it.

Rather than feel the constant exhaustion of not looking beautiful enough, I put my hair in a ponytail and settle for an Ariel assisted tooth-brushing.

Rather than argue with an obstinate two year old that she's making an invisible neighbor miserable, I accept the tongue lashing I'll get in ten minutes on the phone.

Facts are facts. The fact is that my house is a disaster.

But my life isn't.

And even when it feels like it is, because people can see my disastrous home and therefore must have access to my disastrous life... the physical therapist smiles and tells me my kids are great, and I must be doing something really right.

Today is our celebration of M's birthday. Fresh fish, a pink cake, chocolate ice cream, home-made wrapping paper covered in his daughters' drawings.

He deserves it.

I deserve it.

And my children deserve the best of what I can give them.

I can't give them a spotless home. I just can't. But I can give them the best of my love. I can give them the majority of my attention and affection. I can give them hugs and kisses, and songs, and stories, and green eggs and purple oatmeal, and teach them to squeeze lemon onto sliced strawberries.

I can let them make a mess.

For me, I think that's the best I can do. Because my life is messy, and they're a part of it.

And I think they know what a big part they are.