Statistics

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

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

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

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?

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

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

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?

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

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

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

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

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

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!