Day 1,071: Today My Son is Four

“The prime purpose of being four is to enjoy being four; of secondary importance is to prepare for being five.” –Jim Trelease

My son turns four today. He is a boy now, no longer a baby, creeping deeper into a childhood that will lead to an adolescence that I still fear I will miss. Every once in a while, I can envision what he will look like when he’s older, or daydream about whether his nutty personality will translate into years of entertainment or danger. I don’t have as much reverse nostalgia as I had in 2011, when the sight of boys of just about any age could send me into an unexpected tailspin of grief, but it’s there sometimes all the same.

I am not one of those mothers who laments the time that has passed. I don’t get wistful over babies or clothes my kids have outgrown or memories of their past selves. Perhaps I would have never been that way, as I am not particularly sentimental. I’ll never know now whether that is the natural state of affairs or the change in perspective that cancer brought into my life. I am the mother who gets this aching feeling when I think about my children’s future selves, the various phases and ages that I can only imagine. I would love to speed up time and see them as adults, safe and secure in their grown up sense of themselves, but of course I don’t want to miss everything as it actually happens.

Reverse nostalgia; one of the side effects of cancer treatment that I didn’t see coming. I don’t know why I feel this more intensely with my son than with my daughter. Perhaps it’s because I am a woman, and I was once a girl, and therefore I can see her in myself and imagine her in ways that aren’t available to me with him. Or maybe it’s because his personality is so extreme and I don’t know how in the hell that’s going to play out over time.

Or, maybe it’s because he was just a baby, nursing happily on my cancerous breast, when our lives turned upside down, and I had no idea back then if I would see him reach kindergarten. Of course, I still don't know that, but the possibility is seeming more and more likely as time passes.

Four is an age that is often overlooked. People have few memories of four. Children aren’t enrolled in traditional school yet. Sometimes, preschool friendships survive into adulthood, but not often. Adults are prone to underestimating the feelings or experiences of kids that age. At four, you are too young to make big decisions, but too old to be immune from the ramifications of small decisions.

What can happen at four that really matters?

When I was four, my mother died. She bled to death internally after an operation. She was resuscitated and brought back to life. She was in a coma for weeks, in bed for months. My grandmother took care of us during that time. There was a huge snowstorm that year that effectively shut the city down, and I walked to preschool through snowdrifts taller than me anyway. When I was four, I stopped sucking my fingers. I could read and write and I kept stats at my brother’s little league games. When I was four, the only decade I had ever known turned over. When I was four, things happened that were important.

When my daughter was four, I was diagnosed with cancer. She spent almost her entire fourth year dealing with a mother in aggressive cancer treatment. And yet so many other things happened as well. I just asked her what she remembers about being four, and this conversation ensued:

L: Oh, I don’t know. That was such a long time ago.
A: But then, if she doesn’t remember, how will I know what to do when I’m 4?
L: It just comes naturally. You knew how to be three, didn’t you?

Ah yes, children don’t understand anything, do they?

My son is so little, and so old. He is so aggressive, and so empathetic. There is a storybook that we read where a bunch of animals have a sleepover, and the owl is left to play checkers alone because he is nocturnal. Augie always says that he would like to be in the story, so that he could play checkers with the owl, and he wouldn't be alone. He wants us to understand that he doesn't feel SORRY for the owl. He understands that the owl might be happy; he simply would like to offer to keep him company.

Augie is the one with rhythm, the one who can’t stop singing and who remembers every lyric to every song he's ever heard, who loves to get naked and ask inappropriate questions about alcohol, the one who looks jealous in a real, grownup way every time he sees his parents kiss. I’ve written about him before, but I often don’t know what to say. His personality is, in some ways, best-suited to short-form writing; Augie is like Twitter personified. He is just something else.

The things he says are just too much. Sitting at the breakfast table when he was 2 years old and could barely speak; he turns to me and says, 19 more years, mommy. 19 years until what? Until I can have a beer. When I asked him why he couldn't just listen, he said, You know I'm three, right mom? I'll listen when I'm six. This is the kid who, at two and a half, when asked what he would ask for from Santa for Christmas, got a really mischievous look in his eye and said: A Mountain. He's always asking about girls, always shaking his booty. Always giving us reason to just shake our heads.

Teenagers and young adults love this child. He steals the spotlight away from other kids, away from our daughter. He uses his cuteness to get his way, with other people anyway, since it doesn’t work for him at home. He is charming and manipulative and devious and willful. He’s funny. He loves animals; in fact he loves them enough to give up his mamas cold turkey so that he could watch the class hamster for the week of his birthday. Last Wednesday, I told him he couldn’t have the hamster come home with him if he didn’t give up his mamas at night. He looked at me and sighed. I know, mom. But not tonight. And he put one in his mouth and held onto the other one and would not budge. Not tonight. And then the next night, Thursday, the night before we were to bring her home, he gave his two mamas to his father, and he was done with them forever, just like that.

.

This one, where do his questions come from, how does he know what he knows? What’s behind those eyes? He will deliberately disobey me, make a mess, take his pants off, start singing and dancing, punch something and start making animal noises all within the span of three minutes. And then, he will pause. And he will ask me a question:

Mom, when we die, who is left alive?

And his father and I will raise our eyebrows, and his father will begin to talk about the memories that our loved ones have of us. I am a mother, so I say this: when I die, you will still be left alive.

And he will sigh, looking at us like we have obviously failed to understand the question.

No, I mean, when we die, who's left? What’s left?

And all we can do is look at each other, knowing that he knows what we know.

Happy four, kiddo. I’m so glad I was here to see it. Here’s to more years of you teaching me a thing or two.

Day 1,039: Mommy, I Don't Want You To Die

It's the moment that every cancer survivor with young children dreads. I had just put my exhausted kids down for the night and sat down in the office to check email. A few minutes later, I heard a door creak open and I shouted, "Go back to bed, Augie!" But he was asleep. My daughter was crying, saying, I'm scared! I told her to come in and tell me what was wrong. She said through her tears:

Mommy, I don't want you to die.

My heart caught in my throat. She has never said this to me before, not when I was going through cancer treatment, not ever. I know she has thought about it, but she's never said it out loud. Here is the conversation that ensued:

K: What? Why are you worried about that? I'm not going to die, at least hopefully not for a long time. Everyone dies eventually, but we hope we have a good long life first. Why are you worried?
L: (sobbing): I don't know.
K: Well, is it because I had cancer?
L: I don't know.
K: Honey, I'm not dying.
L: I don't know I just worry because the gym teacher said that if your heart rate gets up too high, like when you exercise, you could die, you could just collapse and die and that happened to someone he knows!
K: (pissed that the teacher would talk to first graders about this): Well, yeah, I suppose that's true, but that would only happen if something is wrong with your heart. And nothing is wrong with my heart.
L: How do you know?
K: Because I know. Remember when I did chemo? They gave me a test, called a MUGA, to check my heart function. They don't let you do that kind of chemo if you have a weak heart. They told me my heart was perfect. I saw the test result. And then, when my heart was acting weird due to chemo--remember that? (she nods) Well, my heart was beating like 130 times a minute when I was lying down! And I was fine. If your heart is beating too fast, your body knows to stop, unless your heart is sick. But even then you don't necessarily die. Remember my cousin J? (she shakes her head). Oh, ok, well, anyway, when he was born his skin was blue. They needed a helicopter to fly him to a hospital and do emergency surgery on his heart. They thought he wouldn't live through that. Then they thought he wouldn't live through the week, through the year, and on and on. I was your age when he was born. Do you know how old he is now?
L: (doing mental math): 30 or 31?
K: That's right. A lot of bad things can happen to people and they don't die. And sometimes people die without anyone knowing it could happen, and that's sad, but it doesn't happen that often. We all have to die, but not for a while. I mean, I could live to be even older than twice the age I am now!
L: And when you're twice your age I'll be like 40.
K: 44, kiddo. So we all need to try to take care of ourselves, like eating right and exercising and SLEEPING, and adults shouldn't make you worry about stuff you can't control. He should be telling you about how to be healthy because it will make you feel better, not because you will be worried about people dying! Now do you want me to tuck you in?
L: OK (not crying anymore).
K: I love you. It's too late to read. Go to sleep.
L: OK. I love you too.

And when the moment came, somehow you knew that the way to ease her mind and make her feel better was not to act as if disease wasn't real, but to acknowledge that it is, and yet people can still survive. You knew, somehow, that denying death or talking about it as if it wasn't imminent or permanent would not be a comfort, so rather than pretending that death wasn't coming, you hugged her and said that it is, but not yet, not tonight, not yet. And she slept like a baby until she woke early in the morning from the sun streaming through her window. She was the first to wake, and you were the second. You stopped into her room for only a moment to say that you were going to the gym. She didn't even look up as she said, ok mom, I'm not hungry yet, I'm just playing with my robots. She looked up at you for just a second, and you acknowledged each other, not as mother and daughter but as two people living impermanently and perfectly in the world, right now, on a sunny day in spring before anyone else had roused themselves from sleep.

Day 924: A Letter to My Daughter on Her Fifth Birthday

As I have been trying to help promote this year's Listen To Your Mother--Chicago show (submissions are due January 15!), I thought it would be a good idea to include the text of the piece that I performed in the 2012 show; this piece, in this exact form, hasn't been posted here yet. You can see the video on youtube (turn up the volume!), read the producers' feelings about it, or ponder my own thoughts about what the experience meant, but maybe the most useful thing would be to show you what I said. And yes, I mean said, not read. Because Lenny was in the audience, and I said this to her.



A Letter to My Daughter on Her Fifth Birthday

by Katy Jacob

Dear Lenny:

Today you are five years old, and I am writing you a letter. In some ways this entire breast cancer blog of mine is a long letter to you and your brother. I write it with the selfish hope that if I don’t survive, you will know something about me, other than that I loved you and cooked good dinners and made you laugh. It seems to me that almost everything about how a parent loves a child is selfish. We want things for you, we steep ourselves in denial for you, but really we do those things for ourselves, because you have taught us how short our lives really are. You make us wince with your innocent curiosity: “When I am grown will I still see you every day?” “How old will you be when I’m grandma’s age?” “Will I have long hair, or do you think I will get cancer and my hair will fall out?”

And it is upon hearing those questions that we make choices. We make the choice to acknowledge the imminence of separation, illness, and death, and then to just let it go. If I could make any choice, I would go into the future so that I could know you as a grown woman, and see the answers to your questions for myself.

In the meantime, I am astounded by you, by how you are such a…Lenny. Parents like to say that their children are a part of them. That is simply not true. Take, for example, your memory. You remember all of the things we say, all of the things you’ve seen, all of the people you’ve known. That’s just a part of you, like so many other things. We did not make you smart, or fragile, or funny. We did not make you shy around people and comfortable on a stage. We might have taught you empathy but could not teach you the appropriate times to use it. We did not make you fussy, or willful, or contrary.

We might have given you your looks, but we did not tell you how to handle them. I still laugh when I think of that birthday party we attended when you were three, after the fourth or fifth father told you how beautiful you were and you looked him right in the eye and said, “I know that. Are there cupcakes?” As you get older, I know how weary it will make you as the questions turn into propositions and the appreciative glances turn into unwanted stares.

I wish I could make a different world for you. When you ask how old you will be when this happens, or that happens, you are really asking, “Mom, what will I be like? What will the world be like?” And the answer is that the world will be the same, but you will not, because that is what happens with people who live in the world. I can remember being five, being as happy and friendly and shy as you are today. What I don’t remember is when that was lost, when I learned how to be mean, to fight with my fists, to run and not stop running. In the scheme of things I wasn’t that much older than you.

I want so desperately to protect you, even though I know I might not be there to do that. On some level you know that too. That knowledge is a burden that I gave you, but I didn’t tell you how to deal with it, because I really didn’t know how. I realize now that all I could do was deal with my burden myself, and that you would learn from me how to deal with yours.

I only wore a wig for a few weeks, and only for a few minutes a day when I walked you to school, because I didn’t want you to have to answer questions about cancer. I spent close to a thousand dollars on hair, and then spent six months just walking around bald. And that is the lesson I was teaching you, though it was hard for me to see it at first, until I learned that you were giving preschool cancer tutorials, telling everyone: “My mom is on chemo. It’s medicine for people with cancer that you get through a needle in your arm. It made her lose her hair and it can make her sick. Soon she won’t have to do it and she will feel better on radiation.”

As with many things over the last five years, I just didn’t see that one coming. That is the gift you have given me—the gift of being continuously surprised. It is difficult to find a way to thank you for that, or to repay you. So what would I give you if I could give you anything on this day? I could be trite, and tell you to be yourself, to enjoy life, to have no regrets, to find something that you love to do, to be a part of improving the world. But the truth is I just want to know that you’re there.

Perhaps that is what I am trying to pass on to you, this strange ability to be a comfort just by being. It might be a better way to walk through life than any other. Or maybe I tell myself that to make it seem acceptable that I am not the things that I am not. I am not the perfect nurturer. I have been stern, and angry, and busy, and sick, and scary. I often read the newspaper and ignore you. I am the reason we watch sports on TV, not cartoons. I leave the house a lot to exercise. I cook and clean and collapse on the couch and I rarely get down on the floor to play with you.

I want to offer to you the one thing that I can’t promise you: I want to still be there. I want to see and talk to you every day. Someone once told me that if he didn’t see me all of the time, it would make him sad, but he wouldn’t miss me, because he knew he would see me again. I will always remember how he paused before he said, but even if I didn’t, it’s enough to know that you’re out there in the world, and that you’re all right. Lenny, if I ever get to a point where that’s all I can ask for, and the last thing I know is that you and your brother are there and that you’re all right, it will be enough. Happy Birthday, honey. I love you.

--Mom

Day 915: The Ghost of Christmas Yet to Come

Our Christmases look much like the Christmases of other young families in places like Chicago at the front end of the 21st century. We bake cookies. We try our damndest to encourage our kids to believe in Santa, in magic, and we get teary-eyed when they explain, using their wonderful childlike logic, why they do believe in things that seem impossible. We attend adorable holiday performances at preschool and elementary school, even arriving extra early to get a front row seat so we can take a video of our daughter shouting out her lines in her coveted role as an elf, recording for posterity her pride in being one of only three first graders awarded a speaking part. We buy too many presents for our kids. We tell them to listen for hooves and sleighbells on the roof, and remind them that Santa won't arrive until they are asleep. We change our handwriting and choose different wrapping paper for the presents from non-magical adults. We, my husband and I, have been together almost ten years and yet we don't really know what presents to bestow on each other, so I buy him clothes, which he doesn't want but always likes, and he buys me jewelry, which is always different than what I would buy myself but looks like me all the same. We throw a big party. We drink a little too much. We bring our families, strange as they are, together. We take time off of work. We love each other.

And so it goes. Like all parents, witnessing Christmas through our children's eyes reminds us of our own years when we were caught up in the magic on the other side, happy to be on the receiving end of all the efforts that adults put into making us smile. Like all couples who have children together, but who at one point did not, we remember the holidays that we spent when we were younger and newly in love. We remember our first Christmas in our first house together. We think about the first Christmas that we had as a family, our family, the one we made, as a choice. And I at least think about my youngest child's first Christmas, which was the last one he had with parents who still believed that the world was offering our beautiful little family a long and unopened gift that just couldn't possibly end.

I spent today, and most of the last month or so, very much wrapped up in the joy and stress and reality of this Christmas, this present-day, 2012 Christmas.

And perhaps we are not that different than other couples in this, in what I am about to say. Perhaps I should not speak for my husband, who might not feel this way at all. But I have these moments, these moments of clarity both large and small, where I am reminded of the Christmases yet to come, including the ones that I will never see. It's that glimpse of the void that is part of what makes us all human, but it is something else too, something less dramatic, more practical, really.

It doesn't happen often, but I think about holidays, seasons, life events that might happen in my absence. I don't do this out of self-pity or in order to bring some kind of dramatic flair to my life, but rather because I've been put in a position to think about it.

During our holiday party, we were happy that of the 50 or so guests, our kids' best friends were able to attend. Lenny has had a best friend since age 2, and Augie since 7 months. I never believed that children that young could make such meaningful bonds until I witnessed it for myself. Those bonds have lasted through different schools and now even different towns. And as Augie's buddy was leaving, we decided to take a few pictures of them. The photos of them are usually just blurs of little boys making superhero poses...but not all of them, not this time.

When I saw this picture, with the two of them looking like pint-sized frat boys, I had to turn away and shut my eyes so that no one could see my tears. For the first time ever, I could imagine what my son would look like as an older child, a teenager, even a man. In absence of the three year old voice, the goofy mannerisms and outlandish behavior, I could see him, as he will be someday, this good looking little boy of mine.

And it brought me back to all those days in 2011, when just the sight of boys--teenagers especially, but even older children--would make me wistful with that strange, reverse nostalgia that comes from something like cancer. I used to wonder, what would it be like if he was taller than me? If he had a deep voice? If he was embarrassed to be seen with me? If he began to date girls just like me or the opposite of me?

And will I live to see any of that?

Of course, none of us knows what we will live to see. I have lived to see more in the last two and a half years than many women diagnosed with triple negative breast cancer. I have seen a lot more than a lot of people who are no longer here for one reason or another.

But I still think about it. And while it makes me wistful, and somewhat sad, to imagine the things I might miss, for the most part, the tears are not tears of sadness.

I am grateful for the strong belief that I have, that every parent has, that he will grow up, that he will become a man, that he will live a wonderful life, with or without me. It is the almost frightening power of that belief that brings the tears.

That belief is so strong that it enables us to invent magic. On some level, maybe we as parents need this Christmas type of magic to be real, so that we can convince ourselves that through some magical force, our children's lives will be beautiful and eternal, even here on Earth.

Like many parents, I gave a lot of thought to what I would tell my daughter if she asked me about certain recent events that took place in a first grade classroom.

My daughter is in first grade.

Do you hear me?

My daughter is in first grade.

She has not asked me a thing, and I don't think she knows about it. I have no intention of telling her if she doesn't ask. But I did figure out what I would tell her if she wanted to talk about it:

Think of all the adults who have protected you all of your life. You have attended daycare since you were three months old, and every adult who has ever cared for you, and every teenager for that matter, has loved you. They would all protect you, no matter what. I don't have any idea why such horrible things happen. But I want you to understand something. Do you remember when I had cancer, which is obviously a bad thing? Do you remember how easily I talked to you about it, how I told you what would happen, and how we didn't keep things from you? Do you know why I was able to do that?

Because it was happening to me, not to you. And I could take it. I could stand it.

And I know, because she's my kid, that she would understand what I was trying to say.

And I know, I just know, that they will have a million more Christmases, whether I am here or not, and the magic it takes for me to believe that is the magic that Christmas is made of, and that is good enough for me.

Here's to a wonderful Christmas that was yet to come just a few short years ago, when it was hard to see, but it happened all the same.

Like magic.

Day 890: Magical Thinking

A few days ago, I wrote a post about my strong belief that Gilda's Club should not change its name. I decided not to make that a KatyDidCancer post, because to me, it was broader than that. When Radner spoke of "Delicious Ambiguity," she admitted that she had wanted to continue to believe in "magical thinking," even through her cancer diagnosis, but at some point she just couldn't anymore.

Doesn't that happen to all of us at some point? Of course it does. Part of what makes childhood unique is the strong power of magical thinking. Make-believe games, imaginary friends, playing more with the box than the toy inside it, and the ways that children continuously remake themselves, are all ways that kids learn to navigate the world.

I think this is really important. My kids go or did go to Montessori school for early childhood education, but I don't believe in the Montessori philosophy that says that children should only play "real" games, lest they not be able to tell the difference between fantasy and reality. I don't believe in this because here I am, 37 years old, and I want someone to tell me:

What the hell is the difference between fantasy and reality?

Truth is often stranger than fiction. Take it from me. I've learned that the hard way.

Around this time of year, there are millions of parents who navigate ways to try to keep the idea and the magic of Christmas alive for their kids. We aren't religious here, but we are serious about our Santa. The kids even believe in Santa Mouse--he stuffs the stockings and you have to leave him cheese. Trust me, it's a book--and a classic one, at that.

Augie is three and a half and believes in Santa whole-heartedly. I've wondered about Lenny, though. Last year on Christmas eve, we showed her the Norad tracker online. Santa was in Estonia, on his way to Helsinki. I told Lenny how long the tracker said it would take him to get from the one to the other, and then asked her when Santa should arrive in Chicago. Lenny is a geography nerd. There she was, 5 years old, and she knew all about Estonia and Helsinki. Then, she put her fingers on the computer, did a little calculation in her mind, included the time zone change, and guessed to within 45 minutes of the tracker's estimate.

How can a kid like that believe in Santa? Her logical mind is telling her one thing, but her magical thinking heart was telling her another.

So you know we really screwed up when the tooth fairy skipped over this house on Lenny's third lost tooth. We had to make up a whole story about the weather being the reason she couldn't make it. I know she wanted to believe us. And I know that she didn't, but she played along anyway.

I played along too, most of my childhood. I tried to pray, came to the conclusion I was talking to myself. I listened for hooves on the roof on December 24 for as long as I could, until I fell asleep. I ignored my parents' handwriting on all the notes from various magical beings. I cried when my brother told me there was no Santa, even though I knew that already.

Having children proves to you that there are very few differences between being a child and being an adult. Even children wish they could believe in things that seem impossible. As an adult, you take great joy in the magic. I swear my mom was still playing Santa when I was 20. We tried to keep the magic in the season even when the season proved to be ridiculous, like the last year we had a real Christmas tree, when I was maybe 17 and my brother 20. We bought the tree, they wrapped it in that stuff, put it on the car. My mom drove us back to the house we grew up in, which would sell to another family the next year when my mom moved into a three room apartment, and the whole drive we wondered what that strange chirping sound was. We got home to find a bird had been dying in the wrapping the whole time.

My brother had to vacuum the dead bird out of the tree. The next year, we bought a small fake tree, and that is the tree that stands in my house to this day.

Oh, how life steps in, even when the visions of sugarplums are dancing.

But the mind, or maybe it's the heart, is stronger than reality sometimes. I don't think that changes with adulthood--it just shifts. It is that heart, that mind over matter, that allows us to keep plugging along, laughing, loving, working, while death sits tapping at our shoulders.

Having children just makes this clearer.

Yesterday, Lenny pulled Gabe aside and whispered in his ear. There's really nothing for me to add to this.

Daddy, I want to tell you something. I just realized that I can believe in things that I can't see. Last year, I thought that Santa Claus was just someone in our family who left presents under the tree when everyone else was asleep. But now I realize that's not true.

Because who would want to stay up until midnight?

Day 886: S*** Moms with Cancer Say, Part Two

There's this pervasive rhetoric out there that cancer makes you some kind of uber-parent. After cancer, you are apparently supposed to be infused with a Zen-like understanding of the universe that enables you to calmly and rationally deal with any parental situation put before you. You are supposed to change dramatically, and yet not allow it to be OBVIOUS that you have changed, or why. So you aren't supposed to bring up the Big C at the same time that your life is supposed to be changed for the better because of it.

That's a bunch of crap.

I've said it before--I'm an impatient person. It's entirely possible that cancer has made me less patient, not more, but we will never know, will we? Because this is the only Katy that there is. I started thinking about how we might have some slightly altered conversations at my house the other day, when I got pissed at Gabe for forgetting to feed the kids any lunch on Thanksgiving. I was cooking for two days, and then I went for a walk, hoping they would have had a snack by the time I got back. I even reminded him about it before I left. But no, they were all too busy playing outside. I know I should have been basking in the post-cancer bliss of appreciation for the beautiful weather, but instead, I was annoyed by how hungry they were just an hour before Thanksgiving dinner. So I said this:

I have been cooking for two days. You are NOT eating right now. You will just have to be hungry until dinner. OK, fine, you can have a banana--but that's IT. Your DAD was supposed to REMEMBER to feed you. (Turns to guilty party). Jesus Christ honey, how can you forget to feed your own children? I mean, WHAT WOULD YOU DO IF I WAS DEAD?!

After the look Gabe gave me for that one, I thought it would be worth sharing some other gems as an addendum to the first installment of this, written almost a year ago:

What do you MEAN you don't like this dinner? Do you understand that this food is absolutely DELICIOUS (shoveling food into mouth, so glad to be able to taste it and keep it down)? It isn't a requirement that food taste good you know! YOU STILL HAVE TO EAT IT!

So, do you think I should wear my hair for Halloween, like as part of my costume? No? Well what should we do with it? Do you want to play with it? No? How about one of the other wigs then? The normal ones or the green one or the purple one? Maybe one of your dolls could wear them.

You're awake because you're having nightmares about a dog getting bitten by tics? Well, you know, that's not so bad. I'm sure the dog will live. We all need to sleep now.

You injured yourself? Are you bleeding? I'm sure you'll live.

So you have injured yourself and it's just bleeding a little? OK let me get a bandaid. You'll live. Tell your dad if it gets worse, because I'm going to the gym.

Lenny, have you lost weight? You don't have any weight to lose! Take it from me! You will feel weaker, not better, if you get smaller. Here's some butter to eat and also some two pound weights. Start lifting!

No, I don't remember when the dinosaurs died. None of us remembers that. No, we were not zero, we were nothing. Humans didn't exist. Do you want some raisins?

Yes, your dad and I are going out two nights in a row. We still like each other and life's short.

No honey, I don't really remember when you first learned to walk.

I'm going to the doctor. Jeez, kiddo, it's only a checkup. DON'T WORRY ABOUT IT!

Yes, Daddy is having surgery. What's the big deal? Lots of people have surgery. Why do you need to know why? Wait, why are you crying? Oh shit it's just surgery so we can't have any more kids! There's nothing wrong with him! Why is he doing the surgery and not me? Well, I've done enough.

Look whatever your name is, you had better listen to me!

Lenny, if you don't take care of your hair, we are cutting it super short. These tangles are ridiculous. Augie, you will just have to put up with people raving about your curls all the time. You both know something they don't know: IT'S JUST HAIR.

Don't fake cough at me. Pretending to be sick isn't funny.

So I see that your favorite stuffed animal right now is a demon with a pitchfork. What's his name? Little devil? Cute.

I know it's a school night, but we are going to go to dinner and go mini-golfing, because tomorrow is my birthday and I'm really happy to turn 37. You won't get enough sleep but I don't really see how that's relevant in the grand scheme of things.

Yes, I see that your brother has grabbed onto your leg and won't let go, and you look pretty annoyed about it. Go ahead, hit him a little. You told him to stop at least five times, and you're pretty strong. Use it while you've got it.

Are you really going to keep using that pacifier? You know what, fine. I'm not going to stop you.

Yes, everyone dies. Hopefully not any of us anytime soon.

And then there are all the silences, the times when I don't say anything, because my kids ask me about what they will be when they grow up or where they will live or they talk about getting married, not even really knowing what that means, and I just slightly turn away. Still wondering whether I'll get to see any of that. Still a sucker for Augie's go-to strategy for getting out of trouble, even when he breaks a vase that held branches of the pussy willow tree from my dead grandmother's garden and it came down to me to discipline him. He sobbed, asking, "Is it going to be all right?" And I said No, the vase won't be all right. It's broken forever and you need to apologize and listen when we tell you not to do things, like throw stuff in the house. You might need to use some money in your piggy bank to help replace it.

And then he looked at me with those big brown eyes, asked, "kiss?" and grabbed me by the back of the neck and swooped in like he always does, something I'm sure he learned in one of his past lives, and because he believes that this fixes anything and I don't really believe I'm in a position to argue, I responded: And yeah, in general? It's going to be all right..

This photo was taken 10 days before my cancer diagnosis.

Day 850: What We Keep Inside

The other day, my daughter told me that she had a surprise for me from school. I assumed she had made me something in art class or that she wanted to show me a spelling test. Instead, she handed me a small pink bag with a pink ribbon pin and a small card inside of it. I asked her where that came from, and she told me her teacher gave it to her. I didn't get into it at the time, because she didn't seem like she wanted to elaborate. Today, after Gabe and I returned from a wonderful night away in Union Pier, Michigan, the following conversation ensued:

K: How did your teacher know I had cancer?
L: Because I told her.
K: Why did you tell her?
L: We watched a video about kids and adults who had cancer.
K: Wow. What did you think about kids having cancer?
L: (Shrugs). I don't know. I hadn't thought about that before the video.
K: Well it doesn't happen very often.So did your teacher ask you if you knew anyone with cancer?
L: No. When we were watching the video I was thinking about you.
K: OK, so then you told her?
L: I told her the next day. She gave me the surprise because she said she had bought presents for people in case there was anyone who had a family member with cancer.
K: That was very nice of her. Do you remember when you found out I had cancer?
L: No.
K: You don't remember anything about it?
L: I remember when you had surgery the first time. Meemaw stayed with us at our old house.
K: Were you worried about it?
L: Yes.
K: Why?
L: I didn't know what it would be like.
K: What what would be like? The surgery?
L: The whole thing.
K: Did it bother you?
L: No.
K: Nothing ever bothered you?
L: I remember when you didn't have hair. That bothered me. I liked it better when you had hair. It looks better.
K: Do you remember anything else?
L: I remember that we ordered food or other people cooked food for us a lot.
K: Right. Were you worried?
L: No.
K: I just ask because a lot of kids worry when their parent has cancer. Do you ever think about it?
L: No, I never think about it.
K: OK. So...do you not like to talk about it?
L: I don't want to talk about it.
K: Fine. Time for dinner!

Oh, how they fib, how they hide their feelings from us in order to spare us, even at six years old. I know very well that Lenny remembers almost everything about the entire ordeal of my breast cancer. She brings up random memories all the time. She still sometimes uses cancer as a measure to remember when things happened: Oh, that happened before we knew you had cancer. That happened when you were bald. We didn't go to that party that time because you had cancer.

She was the four year old who at day 25 of radiation said this to me: "Mom! Only eight left!" Because she had been counting down backwards from 33 and she had never told us that. She even correctly removed the weekend dates from the equation.

Lenny refuses to cut her hair these days and I know why. She asks me all the time when I will grow my hair out. She tries to console Augie when he gets fixated on death by bringing up my cancer, and using it as an example for how bad things can happen that don't always kill you. She will even qualify those statements with things like "well at least not right away," no matter that we have NEVER discussed cancer returning with her.

Obviously she thinks about it. She waited a day after the video, cornered the teacher when she was alone, and told her about it. Obviously she worried. She cried, she was angry with me, she gave all of the kids at preschool tutorials about chemo. She talks about "the first surgery," knowing very well that there was a second one.

Lenny remembers everything. It's one of the things that makes her Lenny.

I have noticed since she has started first grade that she keeps things from us. She gets a bloody nose, is sent to the principal's office until it stops, and I find out about it from another kid's mom. Boys call her names or give her noogies and I find these things out eventually, but not right away. When she does tell me these things, she is honest about whether or not they bother her. But the rest is just a cloud of omitted information, the kind that she used to provide without being asked, in full detail. This is a part of growing up, and it doesn't bother me, considering how I swear to God I never told anybody anything that had much import--not my mom, not my closest friends--when I was small.

I remember that feeling, that desire to shield the world from the things that I knew were problems, in order to spare them the notion that my life was not so innocent after all. I knew that I was a child, and that children weren't supposed to think about such things or have anything bad happen to them that they would then think about, and I wanted to protect adults around me from the knowledge that that wasn't true. And now I have this child who has always hated conflict--ALWAYS--even when she was just a tiny kid. She gets scared at the most basic animated movies, not during the scary parts, but when people or animals do something that would get them in trouble. She's been this way since she was less than a year old--the thought of negative consequences must just hang over her like a cloud. It's funny, because no one ever got in trouble in our house until Augie was about two years old. I don't know where that came from, that extreme conflict-avoidance--but I do know that she uses it still.

I ask her these questions in a seemingly offhand way and she knows it's not offhand, that this is some serious shit. So she shrugs, feigns amnesia, tells me it's nothing.

That's ok. Lenny is fine, she has handled everything very well, and she will continue to tell people things about it when she needs to, as she did last week. She's little. She's my kid. I have no idea what else to tell her about it outside of what I told her in front of 300 other people that one day in May.(If you want to see the video--here it is!) This whole thing has made me realize that I really need to revisit my Cancer Mentors idea. If a four year old, or a six year old, can hide things so well, Lord knows what teenagers are thinking.

When it's a kid in your own family, you can only hope that she talks to you when she needs to, that you have made it clear that it's ok, and that some other adult with a little bit of distance has the wherewithal to bring it up. And then you can let it go, and not say what you wanted to say when she told you about that cancer video, because you know the sentiment would make her squirm:

Oh honey, I was thinking about you too. No matter where I am. No matter what.

Day 838: What is That Like?

So, it's still October. That means that it's still the time of year when people should be preparing their inappropriate Halloween costumes and finding yet another way to make trick or treating less fun for kids, but in addition they are buying pink and talking about how important it is to save the boobies.

Those of us who have at least temporarily survived breast cancer who have a voice in the universe, no matter how small, use that opportunity for different purposes. I'm going to use mine this October to continue hammering some things in about what it is really like to have breast cancer affect your life, your likelihood of getting old, and everything else. This time, my message will be brief.

Here are a few small, everyday examples of what it means to be a young breast cancer survivor, from a few different perspectives:

Your mom obsessively reads your blog posts, probably clicking several times a day if nothing new shows up, because she knows that is the only way that she is going to learn what you are really thinking. She has been on hormone replacements for menopause for over twelve years, and yet it is YOU who had breast cancer. She would like to trade places, but she can't. She often asks how you are doing and sounds a little bit panicked each time. She is completely convinced that because you had stage one cancer and did extensive chemotherapy, that your cancer will never return. She hates when you remind her how easily it could return, and always asks the same thing when you tell her about another woman with early stage disease that later metastasized: Was it in the lymph nodes? She no longer worries about getting breast cancer herself, no matter how many aspirations she endures for issues in her breasts.

Your older brother checks the blog often too, and always reads it. He never says anything about it, no matter what strange or uncomfortable thing he has just learned from his over-sharing little sister about her marriage, her teen years, or her body. He asks you if he should donate to certain races or causes when he is asked to do so, wondering if somehow that would offend you. He is back to calling you once in a blue moon when something needs to be decided, but you both remember when he used to call you every day because he liked to hear your voice and know you were still there.

Your husband carries many things within him that he will never be able to discuss with other men, even if they ask, which they don't. He doesn't really want to go to cancer-related events with you, because it is hard for him. This makes you angry with him. He says he would like to act as if the whole thing never happened and you say that's nice, I wish I had that option, knowing that of course he doesn't have that option either, but that he WISHES he did. He jokingly offers to shave the teenage babysitter's head for her if she decides to go that route, but he doesn't really think it's funny. He researches things online and doesn't tell you about it. He cries more than other husbands. You wish you had more patience for all of this, but in fact, you have less.

Your son asks about death a lot, because he is three, and some three year olds do that. He knows you can die from being sick. He wonders if this will happen to him. He says, but you only die if it's a really BAD sickness, right? And your six and a half year old daughter chimes in: No, you don't always die even from that. Mom had cancer, and she didn't die, and cancer is really bad. He nods his head in ageless understanding, and this idea comforts both of them.

Your friends often act as if nothing ever happened, just as your husband would like to do, and that is both good and bad. Sometimes they say the wrong thing, and you always let it go. Sometimes they say the right thing, and you appreciate it greatly: You know, you would have had cancer whether or not you decided to write about it. So, I can honestly say that I like your blog.

You write a blog, because really, what else can you do? You did all the right things in the first place. You have survived for not quite two years past treatment. You hope there is much, much longer to go. You know that no one knows how long she has, but you also know that there are many, many things that have happened to your body that make your chances for a long life slimmer than other people your age. You still love October, even though it marks the anniversary of one of the worst things that has ever happened to you, and is being used to remind you incessantly of one of the other ones. You have cheated death four times.

You are tired of it.

Day 865: I Remember This

For the second time, a guest post from Martha Jacob! This is in response to the post I wrote yesterday called Guilt.

I remember this:

a little girl (you) who for her seventh Christmas wanted a knock-off Cabbage Patch doll.

a mom (me) who was so excited. Now we (you and I) could play house, dress the baby, feed the baby, put the baby to bed. I got out my doll crib and high chair from my childhood. Fixed them up for the doll you had already named (Sarah Winnemucca Marthagene Jacob), the doll I imagined would be “our” baby.

the Christmas morning when you unwrapped Sarah and her wardrobe (picked out by a Santa mom who couldn’t wait to help you dress her). You were so happy. So was I. Now, I said, you (we) can play house. You can dress Sarah. Feed Sarah. Put Sarah to bed.

the little girl (you) who looked at her stay-at-home mom (me) and said with an incredulous look Mommy, what are you talking about? Sarah is six. She is going to school. I am going to work. I am not going to play house.

wondering, hmmm, let’s see. Your role model (I thought) was me. I’m a stay at home mom, I thought. Most of the mothers in this neighborhood are stay at home moms. You never watch tv (you never sat still long enough). The only mom you know who works is….Grandma Marthagene. Hmmm…. and you loved Grandma Marthagene to death and you went to visit her at work and, hmmmm.

a mom (me) who dressed Sarah Winnemucca Marthagene and fed Sarah Winnemucca Marthagene. She did sleep with you, but stuffed animals slept in her crib. You never played house. She went to restaurants with us, but you never played house. She went everywhere with you, but you never played house.

thinking Oh she’s missing so much.

But of course, you weren’t. You were who you are.

I also remember this:

a young mom from down the street who came to my house crying one evening when I was trying to make dinner. We sat on the porch swing. Dinner could wait. She was, after all, crying.

that new young mom saying How do you do it? How can you be happy being a stay at home mom? You always seem so happy. I hate it. I can’t do this. I love my son, but I can’t stand staying at home.

listening to her go on for awhile and then saying Then why are you staying home?

her incredulous look when she said Isn’t that what I’m supposed to do?

saying No, you’re supposed to do what makes you happy because that’s what will make your baby happy. Unhappy moms make unhappy babies.

her saying But I’ll feel guilty.

my saying But you shouldn’t. You will be doing the best thing you can for both of you and your son will love you as much as if you stayed home. You’re his mother. No one else is that.

my saying Look sometimes I feel so selfish. I always wanted to play house. I get to play real house now. We would have more money if I worked, be better off probably, but this is ALWAYS what I wanted to do. I get to dress dolls and feed dolls and put dolls to bed. Real dolls. But I also get to do whatever else I want. It so happens I like housework, but if I want to do some project around the house (and I always wanted to do some project around the house), I do. I should probably feel guilty because I have this freedom (I didn’t). It isn’t freedom to you, it’s jail.

my saying Get out of jail and be happy.

her saying Thank you, but I just don’t know what I should do.

my dinner being late that night. My thinking I hope she goes back to work. And, as I found out soon, indeed, she took my advice and went back to work.

that young mom coming over weeks later and saying Thank you. I’m so much happier. And sometimes I feel guilty. But mostly I feel ok. I love to work. I’m so much happier. And she was and she never came crying at dinnertime again.

Both are true stories.

You were, apparently, always going to work outside of the home. You are who you were.

No one asks a dad if he feels guilty not being home with his kids. No one blames a dad if he doesn’t stay home with his kids – or take paternity leave or watch football at night and ignore the kids or whatever other stereotypes there are about dads out there.

I remember this:

a tiny little girl (Lenny) who pined so terribly (broke my heart) when I stayed with her for a weekend while you and Gabe went to California. She stared at your pictures, couldn’t go through the picture album that Gabe had made about her first year enough. She stared up at airplanes in the sky when we went for walks. Mommy and Daddy took an airplane like that to California I told her. And they’ll take another one home to you very soon I would say every time.

thinking She must think I’m out of my mind. She was what one and a half? Mommy and Daddy are in that tiny little thing? How, she must have thought, can that be? But still every time we went outside, she looked up for that airplane and Mommy and Daddy.

a tiny little girl running into your arms (first) when you got home saying Mommy Mommy!

you, a working mom, having a little girl who loved you so much.

The debate is worthless. Children who are loved love their parents and want their parents to be happy too.

Guilt is fruitless. For whatever it is spent on, it is lost on. It is fruitless.

and any kind of guilt about anything for anyone who has cancer is more than fruitless. However you or anyone gets through it is no one’s business but your own. If one out of three or four of us will one day have to deal with cancer in our own way, then we will deal with it in our own way.

I wouldn’t have you any other way. Lenny and Augie wouldn’t have you any other way. You wouldn’t have had me any other way. However we did it or are doing it now, it works.

I could feel guilty because I don’t help out with the grandkids that much or quit work so I can help out when times are tough (and boy have they been tough in the last few years).

But, hell. I always did hate to babysit when I was a kid. Loved being that stay at home mom – but the operative words were stay at MY home mom. Doing what I wanted.

I will always be there when you need me, but my days of playing house are pretty much over (although I do still love housework). I didn’t go back for a Ph.D. for nothing. By the time I quit work you won’t need the kind of help you need now that the kids are small.

Oh well.

I bet you love me as much as before. I bet Lenny and Augie love me as much as they always have. Don’t have any doubt about either.

And, you know what? No guilt.

Love,
Mom

Day 864: Guilt

This has been a weekend of babies for me. I went to a party today to meet a high school friend's newborn baby girl; afterwards I met up with another high school friend who had recently had her first baby. Last night, I went to see an independent film, Be Good, which was about what happens to people when babies rock their worlds upside down. I held these tiny little girls and realized how long it had been since my kids were that small; Lenny was so tiny for so long, and somehow, still, you forget. I sat through the film, which I enjoyed quite a bit, and saw everyone nodding their heads in understanding as the new mother dreads leaving her baby and going back to work.

And I began to realize something. So often, women talk about how guilty they feel as parents. Guilty that they don't spend enough quality time with their kids, guilty for working, guilty for staying home, guilty for having someone else watch the kids, guilty for carving out time for themselves.

I have never felt like that.

I struggled quite a bit when I went back to work when Lenny wasn't even three months old. I had to do it--Gabe was self employed, my income was steady, and I held the health insurance. Also, I wanted to work--just not that early in her life. It's absolutely ridiculous that we as a society think a 12 week old baby is old enough to be left with anyone but the basic food source, but, hey, that's America. I worried about her because she took so damn long to drink a bottle and I knew they wouldn't spend that much time with her. How could they? I was right--she was always so hungry when she got home. I remember kissing her before I left for the office and feeling a pang--but it wasn't guilt.

I knew I would be overwhelmed, and tired, and way too busy and I knew I would have to travel soon and the whole thing was really stressful.

But it wasn't guilt. I didn't feel guilty when I went back to work when Augie was six months old. I didn't feel guilty that I earned no income at all for four and a half of the months I was home with him, either. I didn't feel guilty that Gabe might have been one of the only dads alive to use a month of paternity leave to watch his baby by himself so the kid wouldn't have to start daycare until after New Year's.

But no guilt. I think it's the wrong word. Babies at that age don't need you. Now, they need SOMEONE. They need love, and nurturing, and they need to be fed and cared for and they need to learn how to be people in the world. But they don't need YOU. When I went back to work, Lenny was so little that she never knew any different, and Augie was a little pissed, but not nearly as angry as he would be a few short months later when his mom would stop nursing him all of a sudden. I liked working. I didn't really want to be home all day. I would have liked a few days a week at home--but not every day. Why should I feel guilty about that?

As a parent, I just don't feel like I have time for guilt. Growing up, my mom was home until I was about 11. And yet--I don't think she ever played with us, not really. She fed us, and talked to us. She colored with us when it rained. She sang to us on our front porch swing. But we played by ourselves or with our friends, and she did her own thing. I never resented that--that's just how it was.

So it's hard for me sometimes, when I hear other moms talk about how crucial it is to spend as much time actively engaged with your kids as you can, when I realize that Gabe is the one the kids play with, when I get confused when people tell me that everything changes when you have kids. I feel like I am supposed to feel guilty about not feeling guilty.

I didn't change when I had kids--not really. My life changed, sure. But me? I still read the newspaper in the morning and ignore everyone. I still yell at them to get out of the way when the game's on. I don't allow them in the kitchen when I'm cooking. I give them that mom look that I perfected years before I ever had kids (an ex boyfriend used to tell me he could feel me giving him that look through the phone) when they dare to come into our bedroom unannounced. I go on walks by myself because they're too slow to go with me. I spend a lot of time writing blog posts. I have never used baby talk--not ever, not even with other people's kids. I just talk to them--like they are normal, albeit small. I used to get so bored when I was home alone with the kids when they were babies, because I'm not used to sitting still. And then I realized, I don't have to sit still. I'll just get the stroller, make them walk with me. Walk around them and do what I need to do while they play on the floor.

Now, don't get me wrong. I got down on the floor with my kids and kissed their bellies and all of that. Just not for long. And I like holding other people's babies--or at least I like holding the babies of people I like. I'm no huge baby-lover, no overdeveloped maternal instinct here. But I love my kids. And maybe more importantly, I like them.

I just figured they would like me too. No matter how I was--because I'm their mom.

I could have felt guilty, but at some level I knew it wouldn't do any good. And now here they are--these kids who play games like "office" and "spinning" and pretend to make coffee or just otherwise do things that mimic me. Or, even better--they ACTUALLY do things that I do. Lenny reads the weather page every morning. She understands football. She knows how to flex her biceps. Both of my kids know how to make coffee. Augie likes to wear nail polish.

You know, every time I hear friends complain that their husband just comes home from work and plops down on the couch and turns the game on, I want to say (besides, um, that's what I do...), you know, someday your kids will look back fondly on those days their dad would watch the game from his special chair. They will remember the chair, and what brand of beer he drank, and they will remember trying to get his attention and being playfully batted away, and you know what? Those memories are just love in disguise.

But I still live with this secret--this guilt that never was, this thing that sets me apart from all other young mothers in my situation.

I never, not for one day, felt guilty that I had cancer.

I felt many things: terror, grief, anxiety, depression, confusion, anger. But not guilt.

There is some unwritten rule that if you have cancer as a young mother, you are supposed to do everything after diagnosis "for your children." You are supposed to stay alive for them, go through chemo for them, protect their feelings above and beyond your own.

But I didn't.

I wanted to live for myself. I did chemo because I had to if I wanted to be able to say that I did what I could to fight the triple negative beast. I wore a wig for a few weeks to walk Lenny to school because I didn't want her to answer questions--ABOUT ME. I didn't want to be the subject of that conversation. Once I stopped caring, I didn't ask her how she felt. I was telling her, look honey. I'm sure you don't like having a bald mom. But I don't like being bald either. We don't always get what we want. You'll get over it.

Of course I got lost in my own sadness when I thought of not seeing them grow up, when I wondered if they would ever remember me. BUT THAT IS NOT GUILT. In some ways, that is selfishness. I wanted to see those things, I didn't want to miss out, I loved them so dearly and desperately. It broke my heart to wean Augie so violently.

But it didn't make me feel guilty.

I think I've just broken about 10 breast cancer taboos by admitting this. We breast cancer survivors are supposed to be martyrs in a sense, living just to show others how to be strong or brave or "beautiful anyway" or some other shit. But all we want is what everyone wants, and that's more time to be ourselves in the world. And if I was a hardass mom before, well, I'm sure as hell still going to be one. I had my moments of crawling into bed with Lenny to feel her little body next to mine, when I was in my darkest place and I wondered if I would die. But I didn't do that out of guilt.

I remember how guilty I felt over not feeling guilty. I asked my mom if there was something wrong with me, to feel the way I did, to feel like I wanted to avoid my kids because it was too painful to be around them at the beginning, when I was supposed to be hugging them 24 hours a day. And, as all good mothers do, she told me a story. I will not do it justice--she would have to tell it to you herself. I suggest you ask her if you ever get the chance--it's really pretty fascinating.

She reminded me of something that happened when I was four years old, the same age as Lenny was at my diagnosis. My mom was 29, and she decided to have a hysterectomy. She had had issues for years, had been anemic her entire adult life, and she was happy to have the operation. My dad had a vasectomy years before that, so there was no question of wanting more kids. She went in to the hospital, and told us she would be home in a few days.

My mother bled to death from that operation.

She hemorraghed internally following the procedure. She realized she was dying--she saw the white light, talked to the ancestors from hundreds of years ago, was happy to go. Then, she thought of us, and wondered what would happen to us, so she screamed.

Nurses came in, and told her she would be fine. Her doctor, a man that many women in that feminist era didn't like because he called women honey and things like that, came in and asked what the hell is wrong with that girl? Nothing, doctor, she's just scared. Yes, something is wrong with her or she wouldn't be screaming.

And she flatlined, and he stripped the veins from her legs and sewed them into her stomach, induced a coma, and saved her life.

She was in the hospital a long time. Even once she got home, she was bedridden for months. My grandmother took a train 65 miles to come live with us so my dad could work. She cooked our meals, bathed us, walked me to preschool through the blizzard of '79. I took naps with my mom, but otherwise, I rarely saw her or talked to her. I knew she was there--but it was so different.

Finally, she got up and about. I threw something at her, angry for all the time she was "away." And she told me, enough of that. Mom's back.

She stopped telling this story long enough for me to ask if she felt guilty during those months. She told me that she never felt guilty, because she had to do what she needed to do to get better and live and be there for us, and to be able to be herself. She told me something along the lines of a phrase I learned from another cancer survivor 40 years my senior: You are the most important person in your house right now.

And that's unfair. But life is unfair. The kids will get over it. Gabe will get over it. I told myself that as I walked away from everyone on chemo days, went right upstairs, got sick, took to bed. I told myself that as I got skinnier, as I fought with doctors, as I telecommuted when I hadn't slept for five minutes in five nights. I told myself: Don't feel guilty. You need to do what you need to do to get through this in order for anyone to get over it. You don't have time to feel guilty.

I must have been remembering this story one day at the tail end of chemo when I made the decision to tell all of the people who had generously made food for us for four months that I was ready to cook for my family again. I went into the kitchen and started to get dinner ready. I was bald, and I had no eyebrows. I was in menopause and I had hot flashes every five minutes--literally. It just got worse with the oven on. I had scars all over my left side and soon I would have radiation burns as well. Lenny came in and asked me what we were having for dinner. Lasagna again?

No, I said. I haven't decided yet.

She looked at me strangely--almost suspiciously. She pouted and said, well, I don't care. I'm not hungry anyway.

I told her not to talk to me that way. I asked her why there were rugrats in my kitchen. I said:

Mom's Back.

And she continued to pout, but I saw that glimmer in her eye. I saw her skip into the next room.

There was never any need to feel guilty, because you know what?

I'd never left.

(For those who don't know--I have started a second blog, in order to give myself permission to write about the random things in life rather than the cancer things. You can now also find me at LiveChickenOnSix.)

Day 853: Childhood, Defined

One of the unique markers of parenthood is that it gives you the opportunity to actually observe childhood. When you are a child yourself, you are just living your life, aware that you are small, but lacking the experience that informs what is special about childhood. Then, once you are grown, if you choose to have children, you see these once helpless people begin to do things for themselves. You observe a series of firsts, and you take an insufferable number of pictures, and you record the cute things that your children say, and you think back to how it was when you were their age. You juxtapose your own experiences onto theirs. The fleeting nature of time makes you wince, or cry, or hug them tighter. You think about how short childhood is, compared to the rest of life. You use words like innocent and precious.

You spend most of your time being hopelessly wrong about everything.

I took my daughter to school today. I recorded my feelings about leaving her at her first day of first grade. I lamented how sad her brother seemed to be that she wouldn’t attend Montessori school with him anymore. I shed a tear or two. I wished she would have looked up to say goodbye as I waved to her at the same time that I was glad that she was so greedily reading the new workbook at her desk.

I did what parents do. I thought about milestones, new phases in life. I acknowledged that in a blink of an eye that child will be in high school. I considered how absurdly fast six and a half years have gone, and part of me would have liked to hold that image of her tiny six year old body at her desk for a long time.

But only a part. The rest of me is happy for her and glad that she is big enough to do some things she couldn’t do for years, because I know that’s what she wants—to get older, all the time. I know that being little has its disadvantages. I’ve learned some things, perhaps due to the things that happened to me as a child. When traumatic things happen, you either choose to forget how you felt at the time, or your feelings are imprinted so strongly in your brain that it would be impossible to forget them, no matter how long you live. I am in the latter camp, and I can honestly say that I remember at least some of what it felt like to be a child.

It was hard. Now, don't get me wrong. I had a mostly happy childhood, in spite of everything. I was loved and had friends. My home life was troubled and we didn’t have much money but I was never hungry. I was girly, I was a tomboy, I was a lot of things. I worked. I shielded other people from difficult truths and from my own emotions. I kept a lot to myself. I learned how to say goodbye with grace—to people, experiences, old ways of being. But I had no control over what happened to me, and I remember that. I didn’t make big decisions. There was a world and I lived in it, in a small way. I was important, but not in charge. There were so many things that I didn’t understand, that adults didn’t want me to understand.

I don’t remember my first day of first grade, or of any grade. And that is not because the years have taken their toll with my memory. It’s because those days were just not that important to me. There are many, many other things that I do remember. Lenny might remember this day. She might not. Her brother might quickly get over her absence in his daily life. He might not. Their parents chose their reality, but could not choose how they felt about it.

Yesterday, the kids played so beautifully together for hours that I felt that something important had shifted. I figured that those 10 days together in the north woods, with no other kids to play with, must have caused it. And then I heard crying. Mommy, Lenny won’t play with me anymore. I want someone to play with me. And I walked into my daughter’s room, to see her reading on the floor while she ignored her wailing brother. She looked at me half-defiantly. I just want to be by myself.

And I know that—I have always wanted that, birth order be damned, I’m the younger one and I’ve been trying to be alone for 37 years. I’ve wanted to be alone as a child, a teenager, a young woman trying to figure out how to be in “adult” relationships where people actually want to be around you all the time, as a mom. I manage my family’s schedule such that I am by myself (usually exercising—walking, spinning, strength training—such good excuses) for at least two hours every single day. I got it, I understood her.

And I took the book out of her hand. Lenny, this is the last day that you have to play with your brother without worrying about homework or your school schedule. You will play with him all day.

I was being a tyrant, making decisions for her that I knew went in opposition to what she wanted. I expected a fight. She just smiled, summoned up that coddling tone of voice that makes her sound like a grandmother and said, OK Augie do you want to play marbles? I’ll let you have the shooter.

Because she understands. She and her brother have been figuring out how to balance their different temperaments all their lives. They are only successful at it because they love each other so much, and because they both understand, she more than he, how little time they have to be together.

He knows, to some extent. He talks about not seeing Lenny every day, and we assume he means because she is no longer at his school, but really, he means, someday I know we will live in different places. So he grabs what he can. He wants her next to him when he’s eating a snack. I see him look at her lovingly and then check himself, right before he puts her in a headlock. He says Lenny I am trying to wrestle with you.

I am trying to love you.

So she elbows him in the ribs, just like we taught her to do, and loves him back.

They know about the arc of life, and its complexities, just like we do. It’s just so hard for us to admit that they know. So they shield us from their understanding.

Gabe had offered Lenny a test run of our new routine, telling her on Sunday night that we could wake up early (7, maybe) on Monday morning and see how long it took to walk to the bus stop. I have been having trouble sleeping for the past week, perhaps worried about dropping my small child off with drivers I don't know, entrusting three different sets of parents with her after school care. I woke up around 3:30 yesterday morning and was restless. Around 4:00 I woke Gabe up, which is easy enough to do. Around 5, he emerged from our bed naked and went to the bathroom. He came back right away, looking petrified. Lenny’s awake. Both of us thought, oh no, did she hear us? And I asked what she was doing.

She was sitting quietly in bed reading The Secret Garden, one of those classic children’s books where the protagonist is an orphan with a total bullshit situation, waiting for us to wake up so we could walk her to the pretend bus. She didn’t mention hearing anything. She didn’t mention her dad walking naked in the hall.

She spared us, like so many other times. Like the time when she asked me where babies came from, when I was in the middle of writing a piece for work at home. I decided to take her literally. She didn’t ask about sex, after all. She wanted to know how a baby could be inside a woman’s stomach and then emerge into the world. I told her about the uterus, and that babies are born through women’s vaginas. She thought I was insane but ultimately decided I couldn’t make that shit up. She reasoned that because she had a uterus and vagina, she could one day have babies but her brother could not. I said he could have them in the sense of being a daddy to them, but he could not give birth to them like she could. So she asked, so what does the daddy do? He just has to marry the mother?

And I fed her a snack, not yet ready to get into the whole thing. Because what will I say? I’m no good at telling lies. I can’t be one of those parents who talks about fallopian tubes and zygotes and sperm as if any of that bears any resemblance to what a kid wants to know. I can’t be one of those parents who says sex is something you do when you’re an adult, when you’re in love, a man and a woman blah blah. Because none of those things are true. I remember learning the facts of life, from one of those books that my mother read to us. She allowed us to laugh at the funny parts, which was pretty much all of it. I was maybe 3 or 4, my brother 6 or 7, the same ages as my kids are now. My mom answered our questions—the ones we felt we could ask. I never asked the only question I wanted to ask.

Is that it? There has to be more to it than that, right?

Because I knew that I was a child, and my mother was a mother, and she would not know how to answer that question right then. Just as Lenny knew to pretend to go back to sleep and wait a few hours for the test run. Just as she will probably never ask about the rest of the facts of life—we will just have to offer the information. She doesn’t really know, and yet—she does. She’d like to spare us the trouble.

She knows that adults get to do things kids don’t get to do. I always say, who makes the rules? And she says you do, but I make the rules for my guys (stuffed animals). She believes this to be true. She believes I make the rules for Gabe, though I let him make some of the rules some of the time. And that’s what being a parent is—making the decisions, taking that burden on yourself. My daughter wasn’t sad to go to a new school—how could she be? She has been in daycare since she was three months old. I was not letting go of her and entrusting her in someone else’s care for the first time. She made it clear that at first she did not want to go to this school for “gifted” children, as she wanted to be in school with her best friend. Then she changed her tune, saying she wanted to go but not for the whole 8 years. And now, she isn’t saying that anymore—and it’s not because of her new-found love for the place.

She knows she lost. We made a decision for her, and she had no say in it. She had to take the test and pass it, she had to get through the crazy lottery system. But then, we signed the papers and she couldn’t do a damn thing about it. We aren’t alone. No matter what you do—stay at home until they’re six, homeschool until they’re 17, private school, public—YOU are making that choice for them because you feel it is the best one. Parents can tell themselves that their children should make choices, and that’s right. Small choices are empowering. And they are the only ones children get to make, as we shape their lives for them because we know better, because it is our job.

We switch their school or move to a new house in a new town and they see their friends less because they cannot control their own schedules or drive 30 miles. They get over it. Or do they? Lenny still remembers her best friend from her old daycare—and she hasn’t seen her in four and a half years.

Augie will get over not seeing his sister all the time. Or will he? He will accept it, of course, but it will make him sad and his sadness will be real, not a three year old sadness but the sadness of someone who understands that even your most beloved people leave and live their lives without you.

I know I sound dramatic. I should say that I do not believe that children are like adults, or even that teenagers are like adults. But I also don’t believe that childhood is lived the way that parents think it is lived. We think that kids don’t know that their childhood is short-lived—but they do. They know just about everything we know.

When I write a facebook status about my three year old telling me he will listen to me when he’s six, dozens of people "like" it. It sounds so cheeky. But he was serious. He was saying look, I know I won’t get away with this forever. When I’m six, I will be twice the age I am now, and maybe then I’ll start to mind. Of course, he won’t—not really. I never did. I never listened to a thing I didn't want to hear. Now, my parents might disagree. I was very well behaved. I never talked back. But WHY NOT? Because I knew that if I had a track record of being good, I could get away with more later. I did that at home, and I did that at school. At home, I minded, and I did well in school, and I didn’t cause trouble. So I got to drive my mom’s car, and be left alone in the house and go to parties. Hell I got to go to my boyfriend’s parents’ lake house for my 16th birthday—JUST THE TWO OF US. At school, I studied and wrote excellent papers and served as vice president of my class and volunteered—and so I got to wear what I wanted, and I never got in much trouble for ditching, and when I stopped trying entirely I was forgiven.

I can see what Augie will do, because I have done it myself.

How different am I today? How is adulthood that different from childhood? I think it is different in that we learn to keep things to ourselves, we gain coping mechanisms to manage our losses. But the things there are to keep, and the losses--those are really all the same. I still think about my best friend from 1st grade, who moved to the Philippines. I knew when she left that she would fade into the world and I would never know anything about her again. I wrote a story about her, and it won an award. I was seven.

When Augie tells me with pride that he can finally pump his legs while swinging, because Lenny told him to close his eyes, and he does that to concentrate but also because he says he feels like he is flying, I smile. I smile not because he is cute, but because he is RIGHT. When he gets stir crazy and needs some exercise and gets aggressive and out of control, I lose patience with him not because I don’t understand him but because I DO, and because I have learned how to tame myself and I don’t always know how to teach him. When a stranger stops me when I’m ordering ice cream and grabs my hand and says “my god you have beautiful children,” I look at them and not at her when I say thank you. I remember hearing about my hair all my life and how the attention made me cast my eyes down, and I want to say to her “you know, they are short, but not deaf. Why are you saying that to me, and pretending that they aren’t even there? I don’t have children at all, not really. They have themselves.”

They have themselves, and their experiences, which we are powerless to change, no matter how much we’d like to change them. Sometimes I think about the day when I will have to explain to Augie that I had cancer, and what that is, since he has no idea. He was just a baby—it would be like telling a child he is adopted, as if that should be relevant information in his frame of reference. But the thought lingers with me more and more.

Augie has been talking about death. He asks, how old will you be when you die? How do we die? When I die, I won’t see anyone anymore, right? He sits in the car on a long road trip with his “mama” in his mouth, and then he takes it out and asks, out of the blue, “When I am ten, will I die?”

These are questions that I do not answer correctly. Perhaps if he asked about a pet dying, or an old person, I could respond well. But he asks about himself, and I cannot bear it. I tell him not to focus on dying. We all die, but hopefully not for a very long time. We are all young and healthy now. And he nods and looks down, completely dissatisfied with what I am telling him. I ask who has been talking about dying at school, as if he couldn’t have had the thought in his own mind. He makes something up to pacify me. Gabe tries to help, and tells him that there are three ways that people die: They get old, get sick, or get in an accident. Lenny chimes in that you could get struck by lightning, which Gabe classifies as an accident. Then she says, or you could get sick, like…

And I shoot my dagger eyes at all three of them and say ENOUGH. WE ARE DONE WITH THIS CONVERSATION. Not even daring her to finish the sentence. She realized, I’m sure, that it was me she was sparing. After all, she couldn’t be sparing Augie. He let it go, then ran up to me, grabbed my face like he does when he wants a kiss, and said “hug.”

I don’t know why I worry about telling him. He already knows.