Unschooling Cancer

2011-11-14T21:35:00.000-08:00

There was a moment today when I laid down, covered my face with a shirt (yes, dirty laundry scattered about my room, so when I reached for the nearest thing, I grabbed a shirt -- a cute light blue hoodie. A hoodie passed down to me from my mom because I don't shop). I covered my face with the hoodie and cried.

I cried because there are days when I am the worst mom. Moments when I yell and have the meanest look in my eyes. And that is never, ever the mom I thought I would be.

I cried because we have changed our plans so many times in the last 6 years. This roller coaster the kids have been riding. And I can't blame cancer for all of this. In fact most of our moves and life changes have been cases of the grass being greener over there.

And frankly, right now, the grass is pretty green. So why don't I just sit down in this field and have a picnic with my kiddos?

My tears today, the worries that brought them on, are trivial. And not only by comparison to cancer.

The little red-headed monkeys are happy and healthy. They have friends and loving, supportive teachers. They are growing and thriving.

So I looked back at our Caring Bridge post from this day in 2008. I was so sure it would be bleak and depressing and remind me of just how lucky we really are. Instead, this is what I found:

"Just a quick update:
We are home....finally! L is doing very well and so are the rest of us. We've got a few days of being homebodies, then it's back to Brenner."

So it revealed something else, even more important. We were in the middle of hell. And we found reasons to smile and use exclamation points!

We are home now. We are together, even the dogs! And even though I had a bad day, I'm not going to dwell on it!

My Cup Runneth Over ... could I get a new drink?

2011-01-01T00:45:00.001-08:00

The kids are on day 6 of fevers.

Lindsay declined to stay up to celebrate the New Year saying, "I'm sick. I need my rest!" They do need their rest. Hell, we all need our rest. We have had very little sleep since Monday. Not cancer-parent sleep-deprivation, but we're so out of practice!

Lindsay has managed to sleep well despite her low grade fevers and annoying cough. She's remained pleasant, even helpful spirits. Michael ... not so much.

His fever has been in the 101-103 range for much of the week. He and Lindsay both slept well Monday night and Matt and I made the mistake of saying, "Wow. They slept really well! It could've been way worse." Yep. Jinx.

Michael hasn't slept well since Monday. He wakes up when Lindsay coughs, covers his ears and yells, "Her coughing is (cough cough) too (cough cough) loud!" Yes. That is Michael coughing while he complains! He cries out "I scared! I need to snuggle!" And when I bring him to bed he sees dad and screams, "I don't like dad! I don't want to be near dad!" When Lindsay tries to get in the bed and snuggle he screams, "I don't like Lindsay! I don't want to touch Lindsay!" When we try to give him medication - for fever, for cough, regardless of flavor, he clasps his hands tightly over his mouth. We count patiently to 3 ... 1 -- 2 -- 3. Nothing. "Michael, you need this medicine to help you rest. What can we do to help you take it?" Nothing. "Michael, would you like to rinse it down with juice?" Hands still clasped tightly, eyes bugging out of head.

So I raise the stakes.

"Michael, we can do this the hard way or we can do this the easy way..." ... This is a line I stole from Ashton and Big Guns. It seemed like a good idea at the time. Ashton and "Big Guns" are cancer-fighting super-hero parents. Big Guns apparently uses this line for oral meds with their little cancer-fighter. Umm... Lily ... did you talk to Michael? Did you share your book, "101 Ways to Avoid Taking Medications?" Because "we can do this the hard way" resulted in sticky cherry syrup flying across the room leaving what can best be described as a blood spatter stain on my 400 thread count sheets. 4 letter words were muttered (by Matt, for once ... not me!). Attempts to medicate were aborted.

After the fact, we giggled. We reminisced about Lindsay's behavior in the hospital. Screaming. Kicking. Crying. Refusing meds, procedures, etc. And we said to ourselves, "Oh, poor baby. She has cancer. She's so scared!" And we were ENDLESSLY patient with her.

Fast forward two years. And 3 year old Michael (same age as Lindsay when she was being treated) is now behaving the EXACT same way! No cancer. No hospital. No scary procedures. And we are not even close to being as patient. I should be saying "Poor Michael. Second children are so neglected. Especially when first children dealt with cancer!"

In all seriousness, I sometimes wonder if parents have a limited amount of patience. Like a cup that gets filled when you decide to have kids. And you can dole out little bits here and there but it doesn't get replenished so choose your moments of patience wisely. I doubt this is the case, but ... Matt and I were SO incredibly patient with Lindsay as a baby. She was "colicky" for lack of a better word. We walked her, bounced her, used the sling, the baby carrier, white noise. We did not let her cry it out. We did not force her to go to relatives or friends who wanted to hold her but didn't know how to soothe her. We did not sleep much that first year. Then Michael came along, the easy baby. The sleeper. The smiler. The "put me down I need a nap, please" baby. And life was great. Then cancer. WAY more patience being poured from the cup.

And now Michael is three. And though he is still my sweet little fella, he is 3. Terrible threes, anyone? And Matt and I are WAY less patient than we ever were with Lindsay. And if you put their behavior side-by-side, played a video, I'm guessing we'd see that Michael's "3 year old behavior" is way tamer than Lindsay's. Where did all the patience go?

So while I usually avoid New Year's Resolutions, this year's will be:

1. Be more patient.
2. Find ways to replenish the Cup of Patience.
3. As much as possible, draw from the children ... let them refill the Cup of Patience.
4. Get a pedicure. This has nothing to do with the Cup of Patience. My feet are really crusty and need some attention. I figure if it's a New Year's Resolution, it'll happen ... right?

So, how do you refill your cup?

A Nearly Normal Christmas

2010-12-26T18:22:00.000-08:00

Since Lindsay's diagnosis and remission, holidays have taken on special meaning. Even though I am grateful for every moment we have, every tradition that cancer could have stolen, there are often tears welling in my eyes. I think of what might have been. And sometimes those are tears of "what may come".

But not this Christmas. Only two years post-cancer, only our second Christmas in remission, and somehow I managed to make it through Christmas with almost no cancer tears! There was joy and very little "what if". The children delighted in the Christmas lights, the stockings, even their cousins' elf on the shelf (apparently not phased by the fact that Elfie was there to guarantee good pre-Christmas behavior). And I delighted in the normalcy of it all.

Of course I grieved for the children who have lost battles this year. I felt sad for the children newly diagnosed. I empathized with the mother's trying to make the most of Christmas in the hospital. But none of this was amplified by Lindsay's battle. It was merely the sadness any mother would feel when they hear of a child suffering.

Christmas may be over, but I will always remember this year as a huge milestone. Yes, there can be normal after cancer. I feel it more and more every day!

My Survivor

2010-10-10T17:48:00.001-07:00

Just 30 hours after hearing Lindsay's bloodcounts are good (still in remission!) we celebrated with 3000 blood cancer warriors. Raleigh's Light the Night 2010 was awesome. We played, picniced, walked, celebrated, and remembered the warriors who lost their fight.

cancer week

2010-08-21T19:17:00.000-07:00

Cancer week is almost over. Two years ago today was the day before port surgery, the day before we started chemo, the day before the beginning of who the hell knows. Two years ago today was the worst ekg in the history of ekg. Two years ago today was the most amazing echo tech and the smoothest procedure up to that point for L. Two years ago today was a 4 hours pass to leave the hospital - one of only two she would receive during the 6 months. We went to TGI Friday's because we didn't know a thing about W-S. And guess what? It was a blast. Papa Tom and Uncle Kevin came. I HATE that my mom missed it. She had M and we had no idea we would be getting a pass. L ate cheesy yumminess. We were expecting her appetite to fall off the next day with chemo (little did we know she'd be a chemo warrior princess). But clearly I am digressing.

Cancer week is almost over. And it has mostly been a week like any other. Except I have been full of tears like I haven't been since the hospital. Some of this is because of friends who have relapsed. Some of this is because of hormones (no, I'm not pregnant). Some of this is because I had three hours alone in the car to think way too much.

And as cancer week winds down, school continues to go well. We are doing a math project that involves the seasons. We took a picture of the kids in front of this tree and will re-create it through out the year as the seasons change. L (who generally is not a fan of having her picture taken) consented since "it's schoolwork!". M is just happy to get to wear a dress outside. Life is good. Despite the fun we are having, I find myself constantly fretting over the fact that L will not be in kindergarten. Oh, life could be so much more normal and simple. But then I would be doubting that decision for a million reasons too. And she is really happy to skip down the homeschooling path hand-in-hand.

Cancerversary

2010-08-17T23:37:00.000-07:00

I'm awake tonight. 2:37:28 am ... not atypical.

The reason I'm awake is that I had a headache. And to avoid it turning into a migraine, I took Excedrin. And now I'm wide awake, but, thankfully headache free.

The reason I'm explaining why I'm awake is to point out that I'm not awake because today is the 2 year cancerversary.

Though, I will freely admit that my Excedrin-interrupted sleep was punctuated by intense, but undefinable fear about the children's safety and well-being. Each time I awoke (until I finally gave up and logged on), I had a sense of either panic or dread. Hmm...

At any rate, today is 2 years to the day that we found out Lindsay might have leukemia. I say "might". The doctors said, "probably" and "almost certainly". Matt and I were in total denial. I just knew it was going to be Rocky Mountain Spotted Fever or some bizarre virus that her body would beat the hell out of. Well, shit.

The interesting thing about leukemia is that we "count" from the day she was diagnosed. Which makes this horrible day a cause for celebration. Counting is relevant because the farther away you are from diagnosis, the better your odds are. Two years out means your odds of relapsing at about 5%. Three years out means you're likely to stay in remission. Ten years out means secondary cancers are much much less likely. 20 years out means, "Hey, 20 years ago I had cancer. Isn't that f-ing crazy? Let's have a glass of wine and roll our eyes over how ridiculously terrified my parents were."

Happy cancerversary. We won't be celebrating... any more than we do every day :-)

Embracing Embarrassment

2010-08-04T00:52:00.000-07:00

I've been thinking a lot about embarrassment lately. Lindsay tells me I've embarrassed her from time to time. Mostly after an academic exercise. When she figures something out quickly. I may simply smile. I may mention her success to Matt or my mother. "Mom," eyes rolling "you're embarrassing me." It's one of the few times she whispers.

Embarrassment. What is it? What is its utility?

I spent a little time online looking up the word, to be sure I was spelling it correctly. I found a blog about a spelling bee entitled "Spelling Bee Embarassment". Without a hint of irony. But I digress.

What is the value of embarrassment? And why is the pleasure someone takes in our accomplishment both rewarding and painful? Even at the age of five!

As a teenager, I remember repeatedly feeling that my father was trying to embarrass me. In retrospect, I don't think I was wrong. I also remember feeling embarrassed by my mother, though I don't believe that was her goal. At that time, I vowed to never attempt to embarrass my kids. But how can I help but smile when L succeeds at something? When she relishes a discovery? When she sings her heart out. And if I don't smile? If I don't enjoy her joy? Will that harm her more than the embarrassment of my pride?

I imagine she would just die of embarrassment if she knew how I go on and on in this blog!

Late Night Penny Math

2010-08-03T18:56:00.000-07:00

L could not sleep tonight. Perhaps it was a later-than-usual dinner. She ate a veggie burger, pasta salad ("it's even good cold" ... hmm, that should tell you something about last night's dinner), chips, carrots, and water. Then went swimming. Maybe all that just-before-bed excitement was too much. Whatever the cause, she kept getting up - asking for water, hugs, you name it. Eventually I asked her if she just wanted to hang out. There's nothing work than lying in bed awake.

So we talked and had some nice mommy, daddy, first child time without the whirling dervish (sound asleep after a wild and crazy day). I asked her if she wanted to do some math. We really hadn't done any during the day. We'd worked on a story, picking out words (word find with matching), and other language arts type activities. You would have thought I'd asked her if she wanted ice cream. SO I broke out the pennies.

We've been doing lots of math on paper. Mostly because she enjoys it and ideas aren't hard to come by. It's everything we did in school. Straight up arithmetic, patterns/ sequencing, greater than less than. But I haven't been so good with "manipulatives". I still remember the first time I heard the word "manipulatives". It sounded like such a made-up teacher word. Like, "I need a 5 syllable word for 'things you hold'" ... "ooh! 'MANIPULATIVES'". Anyway. Silly name. Good concept. And yet I never think about manipulatives (except when we're eating and end up doing "pretzel math" or "M&M math"... yum).

Tonight was penny math. We ventured into division (without calling it division), and Lindsay took right to it. It will probably be a long time before we divide on paper, but dividing pennies into equal groups was a fun start to what can be a challenging concept. I even gave her 5 pennies and said, "Divide these into 2 equal groups". She made 2 groups of 2 then quickly rejected the 5th. How nice that she didn't get stressed out by that extra penny. So we called it a "leftover" and said we'd better eat it in a day or two or it would go bad!

Can't wait to see what unfolds tomorrow!

Story Starters

2010-08-02T08:04:00.000-07:00

Once up on a time there was a witch who ...

was mean. The she freaked every body out. THE END.

I once knew a

M: witch,
L: that went to the Arctic and scared polar bears.
M: And the witch ate her breakfast of piping porridge.
L: She didn't have any hat.
M: And she didn't have any eyes.
L: And she did have a face that didn't have any eyes.
L: She had purple hair.
M: And a note.
L: She ate peanut butter and jelly sandwiches. She went to the Arctic and scared polar bears away. But the best thing she liked was getting to watch TV all day. THE END

Down in the village I saw a

L: donkey.
M: There was a princess named Belle.

(then a big fight ensued over a plate ... oy)
Mom: THE END!

Watercolors in the Rain

2010-07-27T19:26:00.001-07:00

The kids spent the afternoon in the sprinkler. They ride their plasma cars or bikes in and out of the water. Michael soon tired of this - we've had the sprinkler out almost every day for the last 2 weeks. The temps have topped 100.

So, I broke out the side walk chalk. He drew a seashell in green, then decided to explore chalk in the water of the sprinkler. The effect was beautiful. The driveway is black asphalt and the water both blurred the chalk and deepened the color. It looked like Burt's drawing's in Mary Poppins.

As Michael started this project, it began to rain. We turned off the sprinkler. Lindsay left the ballet she was directing in the garage and joined him in the rain. They covered the side walk in pink, green, blue, and yellow water.

After sidewalk chalk we came inside and were cleaning up. Lindsay panicked. "Mom! We haven't done any homeschooling today!" I tried to explain that she'd been learning all day -- hiking, playing the "listening and looking game", on our nature scavenger hunt, reading books in the car, reading books in the house, singing with her Sandra Boyton CD, making lunch together, reading about dingoes then pretending to be dingoes, reading about wild cats of North America, practicing bike riding without the training wheels. These were all enriching activities. She was unconvinced. I was thrilled. Not that she wanted to sit down and "homeschool" but that she had had a fabulous enriching day and didn't once feel like I was trying to "school" her! Success!

Still it was not surprising that she asked to do "patterns" a few minutes later. She loves figuring out and I'm sure it feels like homeschooling to her. The only problem? She's so good at it, I'm hard-pressed to create any that are challenging. We've done shapes, colors, numbers, equations. So I wrote the following:

1/2 , 2/4 , 3/6 , 4/8 , 5/10 ...

She paused for all of 2 seconds before writing 6/12. Now, at 5, I don't think she understands what these fractions mean. We've talked about halves and fourths when cooking and when drawing circles, but I don't think she's aware of the divison symbol - except for seeing it on measuring cups. Still... to get the numerator and denominator and not to get flustered by the new arrangement of a number on top of another. I was excited! So, I decided to up the ante a bit:

1/3 , 2/6 , 3/9 ...

I had to leave the room to help Michael. When I came back, 4/12 was written in sequence. My mom was standing a few feet away. I asked if she helped her. Nope. How is this possible? We certainly haven't practiced counting by 3s. Much less within the context of a fraction. See why I'm at a loss on how to make this more difficult? She wanted to keep going, but I couldn't think of anything, so I resorted to shapes. Please, send suggestions!!

Hi. It's been a while.

2010-07-26T22:01:00.001-07:00

And so much has happened. Let me explain. No, let me sum up.

1. Working way less (3-8 days a month)

2. Staying home way more. Matt back to work full time in Raleigh.

3. Trying to sell the house. Matt living in tiny apartment in Raleigh.

4. Enrolled Lindsay in Raleigh magnet lottery. Lindsay protested, begged to be homeschooled. Didn't match to any of our choices. Enrolled her in Spanish language immersion program here. Lindsay protested, begged to be homeschool. Thought I knew better since Lindsay loved preschool. Decided to move to Raleigh despite house not being anywhere CLOSE to selling. Enrolled L&M in summer art camp in Raleigh that is a preschool during school year. Kids LOVED it. Decided to register Lindsay as a homeschooler (oops, haven't done that paperwork yet) and home/unschool but send her to Arts Together preschool because (1) she loves it (b) there just happened to be 1 spot left in the entire preschool (3) they have yoga in the afternoon and (d) the teachers are FABULOUS.

5. Put Michael on the waiting list for Arts Together. He says, "I like black now because Miss Lauren (dance teacher) has black hair and wears a black shirt".

6. Working WAY more days this month than intended so spending time at my parents house so they can babysit. Being back at home, now that's humbling.

7. Started "officially homeschooling" - way more structured than I'd planned. Tweaking it. Some days I get out the workbooks. Other days I just record what we do to prove that Lindsay is "accomplishing something". I know I'm not a radical unschooler. I don't have it in me. But I do believe in natural learning. I don't want to do more damage at home with curriculum and my own agenda and strip Lindsay of her natural love for learning. And Lindsay is INCREDIBLY aware of and resistant to being coerced in anyway. "Try this!" ... "NO!" So we take it one step at a time.

8. Lindsay remains in remission (YEAH!!)

9. Lindsay's blood lead levels remain slightly higher than typical. This is something that happened a year prior to her being diagnosed with leukemia. Long story. Rental house, crappy landlord (would love to post a link to his prominent profile but will resist, you know who you are you jaguar-driving insert-expletive-here), crappy painters hired on the cheap by aforementioned landlord. Lead levels up, leukemia a year later. My suspicions have been up ever since. Michael's levels are normal (he was too young for significant risk of exposure when we were in the rental). We hoped Lindsay's would drop, apparently that happens. But they haven't. So I'm up in a state of irrational anxiety. The kind that mothers are good at, but cancer moms perfect. My fears are as follows: (1) did we cause her leukemia by allowing her to be exposed to lead paint (thus far I am unable to find any connection and her levels are actually within the "normal range", just a tad higher than most kids), (2) if we didn't cause her leukemia, will this low grade lead exposure cause some other problems for her down the road (obviously the IQ reduction that has been published is not apparently a problem, she's so bright... but... what would she be like without the lead exposure, without the chemo, without the 6 months in the hospital without Vitamin D)... she how crazy it feels in my head?

10. So, I'm awake at 1:22 am, in my parents house, thinking about how tired I'm going to feel tomorrow morning. But I'm also kind of looking forward to that cup of coffee and just getting the day started.

11. I'm also thinking about advertising this blog a bit more. Now that I've gotten the crazy out of my system, what do you think? Should I recruit readers? Or just write for the 2 of you who are reading :)

Kids in the Tub

2010-03-28T15:38:00.001-07:00

The kids are in the tub. Today has been blurred by antihistamine and Sunday doldrums. Factor in cold and dreary weather, and parenting has been at an all time low.

They have to see who you are. You are human. You are a person with emotions and reactions to their behavior, just as they are a person reacting to yours. This is a summary of advice from my mother. My mother who never ever seemed any less than the perfect mother. Even when she was losing her temper.

When my mom did lose her temper (it seems that happened more when we were little than big) I used to imagine she wasn't my mother at all. She was, perhaps, a witch. But where did those pictures of my birth come from? Oh, well, she was a witch, so she cast a spell and created them. And now she was posing as my mother. Evil.

But mostly she was perfect and calm. An even-tempered disciplinarian and nurturer.

And I am none of those things on a bad day. But the kids are in the tub and I think it's going to be just fine.

blogging more often

2010-01-29T17:32:00.000-08:00

I didn't make any New Year's resolutions. Did you? What are they? Are you keeping them?

Although it's not a resolution, I have been running. By running I mean jogging with occasional uphill crawling. Still I'm thinking of doing a Team in Training marathon. We'll see. I have a few reservations. The fundraising is steep and at the moment the big training days are the day I work. Still, I think the sense of accompishment would be unparalleled.

Other than running, the new year has brought one other major change. I'm finally staying home with the kids and it's better than I imagined. More on that soon -- I promise!

Statistics

2009-08-17T17:15:00.001-07:00

I was looking at the pics of the kids who are being honored at the upcoming St. Baldrick's event. There are a couple of AML kids who I was hoping would be honored. I have no way of getting in touch with them, but thought it would be great it they were included. I scanned the pics, reading the diagnoses and looking at the pics to see who I recognized. That's when I noticed some of the kids didn't have their ages listed. Of course, I knew Emily and Holly were being honored. Emily had Ewing's Sarcoma. Holly had AML. AML. Just like Lindsay. 1 in 2. There was another child who didn't have an age. A little boy. I had to click on his page. Why did I do it? He had neuroblastoma. That's what they originally thought Lindsay had, after they ruled out ALL. Old wounds opened. Even as I cried for this boy and his parents, I also cried for Lindsay and for myself. There are some pretty simple statistics. I think about that Doors Song. Five to One, Baby. One in Five...

Mommy Day

2009-08-16T17:42:00.000-07:00

What a funny concept. A mommy day. Last week I think I worked about 55 hours. I ended the week with a 10 hour Saturday (no lunch) and arrived home at 6:30 pm. Matt says to me, "I think what you need is a day with the kids all to yourself. You've worked so much this week." I was thinking I needed a mommy day at the spa. Evidently Matt needed it more.

Of course, he's right. The more I'm away from the kids, the crabbier I get. And he and I are so so so very bad about splitting up when I'm home from work. He might go outside to cut the grass or run to the pharmacy, but that's about it. He rarely goes out with friends. By rarely, I mean he's done this once in the past 2 years. It happened to be on our 10th anniversary. And I happened to be working. (Don't worry, Grandma babysat).

Really I'm painting this picture of workaholic mother, enmeshed family. Nothing could be further from the truth. Well, maybe the enmeshed part. But whatever. I never bought into the 90s bullshit psychology that a close family is a pathologic family.

Back to Mommy Day. So Matt announces he's taking the camera, his book, and hitting the road. I'm thinking, why don't I get to take a novel with me when I head to work every day? So we kicked him to the curb, and started the mommy day right. With a cup of coffee and some arts and crafts. By arts and crafts, I mean, Michael colored one of the 8 million coloring books we were given when Lins was in the hospital. This particular coloring book is filled with Princesses. Michael's favorite. It has been colored many many times over.

"Michael, may I color her hair?" ... "NO!" So I got out the hole punchers and started making Halloween confetti (I know it's 2 months away, but last Halloween was spent on the 9th floor of Brenner's Children's Hospital. I'm really looking forward to this year. What was amazing is that Lindsay, who is generally all about being entertained by mom, was playing on the other side of the room with absolutely no interest in what I was doing. I watched for a while and it occurred to me that Michael wasn't really interested in whether or not I participated in the project. So I quietly got up and started doing some cleaning. This went on for 20 or 30 minutes.

Initially I felt guilt. It was supposed to be Mommy Day. Isn't it my role to entertain and enlighten? But then I thought about John Holt. Oh, right. There are things that need to be done. The linens need to be washed. Lindsay also had things that needed to be done. She needed to create her own world of children playing inside her doll house. And Michael had important tasks as well. He needed to color and re-color Belle's beautiful hair. Seriously. We each had our own important task. And at that moment, peaceful co-existence was all that was required. Later, the task at hand was football and more physical and mental interaction was required. And I loved that just as much!

It turns out that Mommy Day was a big success. Matt re-joined us in the afternoon. I was hoping he would be a little refreshed. But, it turns out he spent the day reading on a park bench, photographing the neighborhood, running several miles and then cutting the grass. He was every bit as exhausted as when I came home from work yesterday. Poor fellow. Guess he really is going to need that trip to the spa.

zoo blues

2009-08-14T19:09:00.000-07:00

We used to be anti-zoo. Not that we protested and handed out fliers about understimulated animals. We just generally had a bad feeling about zoos. Now that we have kids, we've visited 4 zoos in 4 states (see the above photo).

It's amazing how priorities shift.

People defending zoos generally mutter something about conservation and then something about education. The conservation bit may be true. What do I know? I've never worked in a zoo. But I'm not so sure on the education bit. Now, from an unschooling perspective I supposed I should embrace the fact that kids are running, jumping, looking, investigating.

But in the traditional sense, there is very little educating going on. And since this is what most zoo-defenders are implying, that is the point I will argue. Sure, there are placards everywhere. "This is the North American Bumble Parrot. It hops from bush to bush, and poops more than it eats." But no one is reading that. They're looking for the next hot dog standing. Or throwing their quarter into a machine that flattens pennies.

I'm not judging. I barely keep up with my own monkeys at the zoo. There is very little soaking-in-of-knowledge. I take the "I'm a veterinarian, what do I know about monkeys?" approach.

So, while I love the zoo from an unschooling perspective, I'm not so sure about whether zoos serve the greater good. Animals pacing. Birds confined to small areas without the option of flight. Eh?

That said, the NC Zoo seems far superior in terms of animal welfare and mental health than the others I've visited. Again, just a feeling, not an expert opinion. God forbid I offend someone.

family bed

2009-08-14T18:55:00.000-07:00

I slept 11 hours last night. Michael couldn't sleep so I climbed into bed with him. That was 8 pm. I woke up at 8:50 with his fingers tugging gently at my hair. I think he had been awake the whole time. I fell back to sleep and when I woke up 20 minutes later, he was out.

I snuck out of the kids room and climbed into my own bed. Some time later, Lindsay climbed in to our bed. And later, Michael too. This is the way it goes. We play musical beds. And, generally, the sleep is blissful.

I slept until 6:45. When I woke up, I was rested. But would have rather snuggled even longer with the monkeys. They were sound asleep, side-by-side, in between me and Matt.

Tonight, after all that sleep, I'm restless. I'm need a good book. Something smart, complex, but not pretentious. Any suggestions?

What's Better than a Polar Bear?

2009-08-13T12:07:00.000-07:00

Evidently nothing.

Today I asked Lins, "What is your favorite thing in the world?" I was trying to come up with ideas for her 1-year-after-being-admitted-to-the-hospital party (we've got to come up with a better name). Without missing a beat she says, "Polar bears."

Okay. Polar bears. Well, I was hoping for a food. Or an activity. But polar bears. Hmm.

So, I tried again. "Lindsay, what's your second favorite thing in the world?" Again, without missing a beat. "Flamingoes."

Hmm. Okay. Flamingoes.

"Mama, ask me my third favorite!"

"Okay, Lindsay, what's your third favorite thing in the world?" a second's pause ... "Trains!"

I was starting to get tickled. "And your fourth favorite thing?" She was laying on my lap, head upside down, staring directly at her little table. "My little table."

"What about Michael? Your family?" She smiled. "Yes, yes, yes. Mama, you're my fifth. And daddy, you're my sixth. Polar bears, then flamingoes, then trains, then my table, then..." then... she lost her train of thought.

Don't you just love love love children?

cash for cancer

2009-08-12T19:25:00.000-07:00

When Lins was in the hospital, we absolutely resisted/ avoided/ shunned other cancer parents. It may sound strange. But becoming part of the "cancer club" was absolutely terrifying. You may as well sign the resignation. Admit defeat.

Fast-forward 6 months. Not a single day passes without the thought, "Is she pale?", "Is the cancer back?" When you mention this worry to friends, other parents even, they look a little surprised. Really? they ask. I try to keep quiet. Not acknowledge the anxiety. Or at least not pass it on to others.

So, something had to be done. Daily worry, fear, dread, anticipation. That's no good. I started looking at other kid's cancer pages (Caring Bridge sites). Something I swore I'd never do. I didn't want to get sucked into that world. And then another mom posted a fundraiser. St. Baldrick's. Get it? Bald-rick's.

I started nagging Matt. You should shave your head. Really. Lindsay would love it. And I nagged some more. I was practically begging him to join the cancer club. Finally I gave up. And that very day I came home and he had raised about $600.

We've been hitting up everyone we know for donations and on Sept 12, he's going bald. It will be almost a year to the day that Lindsay's hair fell out. Of course we can turn any day into an anniversary right now. This fundraising has jerked us out of our self pity and worry. Every hour on the hour we check our totals. We're like kids at Christmas, waiting for Santa to come. Hopefully he's bringing cash. It's going to a great cause!

not really an unschooler

2009-07-13T17:21:00.000-07:00

how can you be an unschooler if you don't stay home with your kids?

well, let's see...

there's the conversation when you come home from work:
(1) when your kids asked what you did at work today (yes, my kids ask this) you actually tell them -- I sat on my ass all day OR I euthanized a cat because the owner couldn't afford treatment OR I cut out a uterus in the name of resolving the pet overpopulation problem (Sure, you might sugar-coat it a tad, but ultimately you share your life just as they share theirs)
(2) you joke with them just as you joke with your husband and friends -- "Michael did you drive the car today?" sure, it's not the exact joke you'd use with your husband ... with your husband you might say, "What did you do all day? Bang the neighbor?" But the sarcasm and jest is similar. Just a tad more age-appropriate.
(3) you READ READ READ to them - you don't come home and try to engage in a "lesson". You just read, or paint, or color, or cook, or dance, or do whatever their brains and bodies tell them it's time to do. And you don't do this only because they are your children and you are hoping to entertain them. You do this because they are lead to do it and you're their mama who wants to participate in their joy.
(4) You try as hard as you possibly can to SILENCE the inner voice that is telling you "they're not reading on the level of other 4 year old" or "painting" or "speaking" or "potty-training as fast as other 2 year olds". You remember how much you resent being compared to your colleagues. And you TRUST THE PROCESS.

cancer schmancer, who wants a drink?

2009-07-11T17:24:00.000-07:00

A day will come when we are no longer unschooling caner, and we are just unschooling. Right? I just wonder when that's going to be.

I've always resented time away from my children. Even before leukemia. As a working mom with a stay-at-home husband, I am simultaneously grateful and resentful. I want to be home. I want to play legos. I want to make dinner. I want to take the kids to the Broad St Artists Co-op for steamers (and a cup of coffee for me, of course). What's wrong with that?

But after leukemia, it's worse. During chemo, I was the primary at-home. Well, really stay-at-hospital mom. I was there changing sheets, carrying back and forth to the art table, surfing you tube for jellyfish videos.

Then chemo ended. And thank god it did. But that meant an end to at-home and a return to work. Now I shouldn't complain. My typical work week is 4 long days. So I get three days with the kids. That's better than most. But this summer we're super busy and a little understaffed, so I'm working 5-6 days a week. And all I can think about is what have I learned from all of this? "This" being leukemia, not work.

I used to think I wouldn't be a good "at-home". That Matt is more patient and has more faith in the unschooling "process". "Trust the process" ... well, that's not my style. But life in the hospital showed me that I could do it. And now I wish I was. Instead I'm off to work at 7:15 am and home after 7 pm. And I feel we're pulling farther and farther away from unschooling as our lives become more and more conventional.

So, I need to stop looking at this as unschooling cancer. That's what I did in the hospital. It's unschooling. And whether I'm home or Matt's home, our kids are free-range monkeys. Learning, growing, living.

Disney and the Aftermath

2009-05-22T17:03:00.000-07:00

Disney, our Make a Wish trip, was phenomenal. Absolutely phenomenal. As one who has always been a little anti-Disney, thinking they are way too consumeristic ... well, I take it all back. The princesses, the mouse, the duck, all of it, was absolutely fabulous. Every minute. We stayed at the Give Kids the World Village - a resort with villas specifically for Make a Wish families.

But now we're home. And I'm back to work. And turning into the crabby mother bear that I don't want to be. Jealous of Matt that he gets to stay home. Short tempered when I have to leave for work in the morning. Complaining that I won't see the kids all day. Of course, I get a lot of time off. So I know I'm being unreasonable. Grown ups have to work. And I have a pretty good job. But I want Michael and Lindsay time!!!!

I'm sure some of this is the Disney aftermath. You can't be treated like a princess (or at least the mother of a princess) for a week, complete with all the ice cream you could want (seriously, ice cream parlor opens at GKTW at 9:30 am, banana splits, floats, cones, cups, sprinkles, you name it and it's yours). But I digress. You couldn't be treated like that for a week and not expect a little adjustment when you return to the real world. Could you?

Perhaps one of these days I'll write about how much I love my job. Or about how, deep down, I just know that Matt is the better at-home parent - he's so patient, easy-going. But today, I'll just moan about the fact that I want to go back to Disney and ride the tea cups and eat ice cream and watch the kids faces shine with delight!

Loving the Front Porch

2009-04-18T15:45:00.000-07:00

Some days I look around the house and think, "Jesus, we're home!" Generally I take it for granted. But every once in a while I remember. Then I take a deep breath and soak it all in.

There is no front porch at the hospital. No comfy couch. With only one room, you can't turn up the TV and laugh your ass off at The Office or 30 Rock. There is no grassy back yard with camping chairs and a cold beer.

Life at home is pretty good.

Life After the Hospital

2009-04-10T16:26:00.001-07:00

I forget about this blog. I'm not sure why. I run through my on-line to-do list: (1) gmail (1162 unread messages) (2) facebook (139 new requests), (3) caring bridge.

I haven't been posting on Caring Bridge lately. What would I say? That I have an ulcer. That on mornings when I go to work, I usually start the day vomiting. That I go to bed at 8 pm because I'm just that exhausted. No one wants to hear that.

Being out of the hospital is supposed to be wonderful. And it is. But every day I think about cancer. Even as her hair grows back, I wonder, will she get to keep it this time? Or is there another round of chemo waiting? And if there is, what then?

And with being home, there is the obligation of work. "Normalcy". The days are long, but we're slow. And all I really care about is when I can escape to see the fam. When we're busy, it isn't as bad. With being busy, there are interesting cases and income ... and that will help us get back on our feet after the 6 month hospital stay. But when there are no patients and still I have to sit at work, I'm furious. Wasted time. 0 dollars an hour ... I'd rather be home, earning at the same rate.

And I suppose I should be thankful. Thankful that we're out of the hospital. Thankful that we're all together again. Thankful that I have a job despite the shitty economy. But I'm not that kind of woman.

I'm waiting for something to happen. Holding my breath. Hoping it doesn't comes. How will I know when it's safe to breathe again?

Supplies

2009-02-15T20:51:00.001-08:00

Bird's Eye Paint
Originally uploaded by matt.redsquirrel

Being in a state of the art children's hospital has its advantages. Like an Arts for Life program. They call themselves "Art Teachers", but it should really be "Art Therapists". They come to the room (if your child isn't allowed to leave it... as is our case) and sit with you and do a project. In our room, we haven't totally gone for the pre-planned projects - you can imagine why. But the art teachers understand our views, some of the interns even share them. So they come in and present the project and then Lindsay does whatever project she creates. Sometimes she does no project at all. She sits and chats happily with the "teacher" as she does a project. Sometimes I do a project and Lindsay makes the creative decisions. This is most common when she's not feeling great. She picks the color of paper, the shape of beads, but may not go through the mechanical of cutting, gluing, etc. Often, though, when she starts making choices, she perks up, sits up and the mood changes. It's amazing it leads naturally into Lindsay taking over. The cutting and pasting (her two favorites) begin. And then, somtimes, she just creates. One day the project was a woven valentine heart. We cut rectangles, triangles, circles, and squares instead. Well, I made a heart - but she created all the shapes you can imagine.

The constant availablity of art has been an inspiration to me. I have always had a desire to paint. To spread paint and create colors on canvas. Even when I was at my most creative - probably in high school - I never took art classes or workshops and therefore always felt I didn't "know" how to paint. This hospital, this Institution, has, surprisingly lifted my creative block. I started buying canvases of all sizes and bringing them to the hospital. We already had some acrylics from my mom and I got more from the AFL teacher. So I started painting. And Lindsay joined in. The pressure to paint something that looks like something or that looks good or artsy or whatever, was gone. I was just helping my daughter to slice through the boredom of another day in the hospital. And as a result, we have made beautiful, fabulous art.

The best thing about canvas (rather than paper) is I have art that I can hang directly on the wall - no need for an art portfolio or to clutter up the already cluttered refrigerator. Also, no need to buy expensive pieces or more affordable "art" mass produced in China for my walls. I have my decor, my child's keepsakes, and my creative outlet all in one.

I think some of the hospital staff and even art teachers were surprised at our comfort level in turning a 3 year old loose with acrylics. But really, who cares if you get some paints on hospital sheets? So we paint a little each day. Then paint on top of the previous day's painting. And after three or four days, we have a family painting worthy of MOMA. At least, in my biased opinion.

Mommy, You're Talking Too Much

2009-02-06T13:49:00.000-08:00

Well, it's true. I've always been accused of having a big mouth. And while I know how to keep that big mouth shut in certain social settings, once I'm comfortable, I love to chat. And gossip. And tease. Well, we've been in this hospital, on this floor, for oh, I don't know 153 days (give or take). So, I'm pretty comfortable with some of our nurses. And when they come into our room, I enjoy the conversation.

Lindsay does not. She feels that adult conversation is over-rated. Downright annoying, in fact. Now, her annoyance isn't limited to my goofy, at times wholly inappropriate conversations with her nurses. Very early in our diagnosis, the hem-onc floor counselor came into our room. A quiet, shy man, he pulled up a chair and started to (more or less) read to me from his manual. Well, no one was up for that. Lindsay screamed, cried, protested in several languages. And he eventually dismissed himself -- never to return. The same sequence of events happened with the hospital social worker and the hem-onc psychologist.

So, it seems Lindsay is most annoyed by people in the counseling industry. Although, Lindsay surprised me when my dear friend, a child psychiatrist, came to visit. Lindsay had never met her, but actually invited her to color with us and to play games. Maybe the lack of a name badge helped.

Then there are the volunteers. Some are old, some are new, all wear coats, made of blue. Yes, the volunteers. It would be really unacceptable to disparage someone who spends their free time in the children's hospital on the cancer floor. They mean well and, for the most part, they are great. But imagine for a minute that you moved in to a new house. You settled into your bed, it had been a long day of moving boxes after all. And just as you were about to drift off, your neighbor walked into your bedroom, "Here are some cookies I made you!" You might think "yum, I love cookies", but most likely you'd be like, "um, hello! this is my bedroom". The next morning as you wake, there stands the same neighbor, hovering over you as you sleep, this time with a stack of pancakes. How long would this have to continue before you adjusted? For me, admittedly antisocial, I would not adjust. This hospital room is Lindsay's bedroom for 6th months. My bedroom too, I guess -- good thing we're comfortable co-sleeping! So when Lindsay started yelling at the volunteers, "WE DON'T NEED ANYTHING!" I didn't jump to reprimand.

And then there are the chaplains. Where the counselors and volunteers are a tad shy, willing to leave the room when a three year old starts yelling, the chaplains seem to feel they are exempt. The sign on the door says "Do not disturb" ... in they barge. Perhaps it is the direct line of communication with the Big Guy. Maybe they feel that their services are more important than, say, the volunteers. Lindsay doesn't seem to mind them. But Matt does. And he let's them know it. So, you know, maybe we can see where she gets it.

Finally, come the doctors. Smart. Dedicated. Focused. And ALWAYS, ALWAYS patient. In they come, white coats and stethoscopes. And Lindsay, bless her heart, does her best. If we're painting, they compliment the pretty yellow ... "IT A SECRET!" she screams. If she's wearing her tutu, "are we going to have a recital?" ... "I SHY!" and if it's the solar system book, well,she might, just might, teach them a thing or two about meteors and the fact that they are not "shooting stars" after all. If they ask for more information, though, beware ... "I DON'T WANT TO TELL YOU!!!!"

Clearly this is all self preservation. Maintaining her bond with mommy, preventing mommy from talking and shifting attention away from her. Keeping secrets - maintaining some sense of control in this nightmare. And, of course, conventional parents (be they doctors, nurses, or psychologists... wait, she doesn't have kids) probably can't fully understand why we don't reprimand this "rude" behavior. Although I will say, they often remind me that "She's just trying to exert some control". Bless their hearts.

How many more days? Who knows. Home can't come soon enough!

Edgier than Cancer

2008-12-12T14:00:00.000-08:00

So, like most people with a horrible disease, we have a Caring Bridge site. And I love it. It's an addiction, really. Every time Lindsay is deep in a benadryl or demerol coma, I log on and see how many people have read and who has signed the guestbook. Some days, the guest book is filled with annoying self help style advice - Take Care of Yourself, Trust Your Doctors, Don't Forget About the Other Child. What, I have another child? Shit.

Which brings me to this blog. Which I've neglected. I started it because I wanted to be able to write about cancer. Whatever the hell I felt like saying. About being a mom, about being tired, about being scared as hell. Yes, hell, is a word I have censored in my Caring Bridge posts. Also "fuck". As in the following, which I chose not to post:

When Lindsay was first diagnosed with AML, all I could do was to walk through the halls of the oncology unit saying 'FUCK' to myself. I would try to think of another word, try to articulate my feelings and fears into a well-phrased, four-letter-word-free statement. But there was no other word. Fuck. That summed it up. I remember the advice of my college professor, Doug Fry. "Foul language" he said "is for people who don't have a vocabulary that is advanced enough to state what they really mean. I think I have a decent vocabulary, but it fails me now. Fuck.

Television is Raising Our Kids

2008-11-14T00:23:00.000-08:00

On August 18, our lives took a radical shift. Lindsay went from being the healthiest child ever - no colds, good appetite, off the charts in height - to being a cancer patient. With that radical shift came a shift I never could have anticipated. The era of television.

As an infant and toddler, Lins was raised in a practically TV free home. We didn't turn the TV on when she was awake, and we made a point to never let her watch "Baby Einstein" or any other children's programming. When she turned 2, we started to have occasional TV "special treats", but they were quite limited. Maybe for a long trip (say, from Wisconsin to North Carolina) or if she was sick. Still, TV just wasn't a big part of life.

In the spirit of radical unschooling, I have felt that, at some point, television needs to be a choice the child makes. If for no other reason, I believe depriving and restricting something that is potentially so addictive only leads to the addiction. Still, I have also believed very strongly that TV and food factor into overall health. And health is an area where my unschooling ideology is less than radical. So, I try to provide healthy choices of food rather than dictate what can and cannot be eaten. And I try to limit the access to a television, ie spend more time outside, so the television is less of an issue or temptation.

Enter leukemia. There was a television playing some inane cartoon in the pediatric ER suite. We left it on. After all, we sat in that room for 4 hours with a 3 year old and a 18 month old. Neither had had more to eat than a graham cracker. And we were hearing words like, "Leukemia" and "don't worry, the prognosis for childhood cancer has improved dramatically over the last couple of decades". A meltdown was imminent. If not the kids, then us.

For the first few days of Lindsay's hospitalization, there were lots of people in and out of the room. Lots of finger pokes, catheter checks. Everyone was a stranger. Everyone was terrifying. So Thomas the Tank Engine was our constant. Our friend. Played over and over, to soothe, to distract. I repeatedly, nervously told the doctors, "Really, she never watches TV at home." How funny that, while they were telling us our daughter had cancer, I was worrying about their opinion of my parenting.

And now, Lindsay is hospitalized for a month at a time, with only a few days home in between each round. And most of that time she is restricted to her positive pressure hospital room. Many times she's hooked up to fluids. So we paint. We play lots of games - monopoly, uno, yahtzee, sorry. We read. We play on the computer. But even with all of that, there is still all the time in the day where a normal family would be outside - playing in a park, going for a walk. So now we turn on the TV.

Michael - 18 months, has been watching his fair share too. Will he be less intelligent for it? More of a bully? Overweight? All I know is that we are a family of four, with a toddler and a preschooler, living in a hospital room for all intents and purposes. If the tv helps us get by, I'm going to try to stop worrying. Instead, I'll listen to Michael singing "Doe a Deer" with Julie Andrews, and think of everything that he's learning that I'm too stressed to teach him right now.

When cancer does the schooling

2008-11-11T18:20:00.000-08:00

Lindsay sailed through the first 2 1/2 months of her AML chemo. They told us she would need a feeding tube 3-4 days into the process, but she just ate right through. They told us she would have nasty infections, end up in the PICU. She had two day-long fevers. They said she would be tired, lethargic, develop sores and need morphine. She played, danced, sang, and begged to go home.

Perhaps we became a bit overconfident. On the surface nothing changed. We continued to Purell at every turn. Lindsay wore her mask on the few occasions she was allowed to leave her positive pressure room. We posted signs and reminded volunteers and staff to wash their hands. We discouraged visitors. Most importantly, we avoided confidence in our writing and speech. We never said, "Lindsay is doing great!" Instead, we wrote, "Lindsay has done well so far."

But, after 2 and 1/2 months, I decided to start this blog. And I really wanted to name it unschooling cancer. A play on "schooling" something. Since we're unschoolers, I thought it would be appropriate. But even as I started the blog, I worried that the title was a bit cocky. Something of a jinx itself. And just a few days later, cancer started schooling us. Or, perhaps, unschooling. But I don't think so. It doesn't feel like unschooling. It feels rigid, inflexible, but there is also a wild uncertainty to it all. So perhaps a touch of unschooling.

Nonetheless, cancer has reared it's true and very ugly head. We ended up in the pediatric intermediate care unit yesterday with a case of pneumonia. We have slept intermittently, but mostly spent our nights watching Lindsay's respiration, taking her to pee after lasix, and changing her bed sheets after diarrhea. It's been a rough road. We've been schooled.

Halfway?

2008-11-05T19:55:00.000-08:00

I thought my first post would be all about AML, Lindsay's story, that sort of thing. But here we are, at the theoretical halfway point for chemo. And I can't blog about cancer today. Because today Barack Obama went from being presidential-candidate to President Elect.

And I am filled with pride, joy, hope, optimism. Pride is the strangest piece of this. I am so proud of my country, and I haven't been in a long, long time. Perhaps it was dubya was good for this country, because he drove us into such an abyss that we have embraced this new face, this new voice. And, perhaps, we would not have embraced him otherwise.

Of course, I'd rather have risked it without the past eight years. I suspect Mr Obama, with his eloquence and grace would have won our hearts with or without the specter that is the dubya presidency. But maybe not with such open arms.

So, tonight, as Lindsay sleeps gently in her bed, her absolute neutrophil count at 7, I have a little hope for our country, at least.