Momming

Blocking and Unblocking the Sun

Posted on by Beth Caldwell

Since being diagnosed with terminal cancer, I have had one goal: to live long enough to see The Girl start kindergarten. She was 2 and a half when I got diagnosed back in March of 2014, and starting kindergarten in 2017 would fall past median survival for me. Thinking about her having to start school without her mother brought me to my knees every time I thought about it. It’s the thing that would bring me to tears, that would break my heart–it was my biggest fear, by far.

Today, The Girl went to her first day of our district’s Kindergarten Jumpstart. It’s a week-long program for kids entering kindergarten, a couple of weeks before the official start of school, where the kids get to meet the kindergarten teachers and some of the other school staff, and learn the layout of the building, and meet the other kids, and just start to get a sense of what elementary school is all about. No, today isn’t the official first day of kindergarten for The Girl, but it’s close enough.

And I’m here. I’m alive. My recent MRI testing showed no signs of leptomeningeal mets. I’m still dying slowly, but I’m no longer staring hospice in the face, and The Girl has started kindergarten. This is the day I have dreamed of for three and a half years, and it’s here. It’s here.

How did the first day of kindergarten go, you ask? Perfectly normally. The Girl was excited and nervous at the same time, and was scared when it was time for Mom and Dad and The Boy to say goodbye at drop-off, but she powered through with the promise of ice cream after school was done. I’m guessing millions of other families had a really similar first day of kindergarten experience today. Being normal when your life is anything BUT normal is pretty amazing.

I like to think of myself as a pretty good writer, but I have absolutely no idea how to describe this feeling. I mean, none. Maybe because it’s not just one feeling–it seems to be a collection of relief and pure joy and PTSD and reliving all the awfulness of the last 3 years and pride in my big little girl and holy hell, just everything, all at once. It seems fitting that today would be a day of a solar eclipse, a time where the sky makes us stop and take in the amazing wonders of our world, to experience darkness and lightness at the same time.
#BestDocEver says I need a new goal, and he’s right. I don’t know for sure what it’ll be–I would love to be the mom of a teenager, which is almost 3 years away. I’m not sure my heart can take 3 more years of the kind of hope and terror I’ve been living with…but I’m not sure I can muster the strength it takes to keep living the metastatic life without that combination of hope and terror. The time I spent believing that I had lepto mets and only had a few months to live, I lost all will to do anything. I didn’t even care about advocacy work. The depression of that hopelessness was pretty intense, and obviously wasn’t good for me. So, maybe looking towards parenting a teen isn’t a bad goal?

Worst Wife Ever Moment: March Madness

Posted on by Beth Caldwell

Hello, my name is Beth, and I’m a college basketball addict. I get a little twitchy when the season is over as I go through withdrawal. And when the season starts back up again, I’m giddy, but not even remotely as giddy as I am when the tournaments begin. For those not in the know, we call tournament time March Madness. This is when I go on a college basketball bender.

I became an addict in college, when I was in the pep band. (I played the flute. Next question: do you still play? I mean in theory I still could, but I haven’t in a looooooooong time, so I’m guessing my skill level at this point would be somewhere around middle school band.) Being in the pep band means you’re part of a Band Family that spends a ton of time together and has all the drama and love that a real family has. It also means you go to a zillllllllllllion basketball games with your Band Family. So, a lot of my favorite memories from college involve watching basketball, both women’s and men’s games. Which means there’s all sorts of positive emotions that I associate with college basketball, which of course feeds my addiction.

Right now we’re really just at the start of my bender. It’s Championship Week, when each of the college sports conferences has their championships. Today The Hubs took The Kids to Emerald City Comicon, so I’ve spent most of the day watching women’s basketball games, including watching West Virginia upset Texas in the Big 12 semifinal. I’ve been a West Virginia fan since college, because lots of folks from our band were friends with folks from the WVU band. So, anytime West Virginia is playing against a team that isn’t from a school I attended, I root for them. It was rad watching those two teams battle it out right up to the end of that game. AND, I loved that their Mountaineer mascot at that game was a woman.

I’ll be honest: this is an addiction I have no intention of recovering from. I intend to spend every March for the rest of my life trying to convince my kids to get into college basketball, and if they don’t, well, I guess that means that The Hubs is going to have to do some serious single parenting on game days. And during March, almost every day is a game day.

A good example: last night was the Duke-UNC game, a huge rivalry game. I camped out on the couch with some cheese fries (that The Hubs made) and a glass of wine (that The Hubs poured me) and watched the game. When The Girl asked me to play princess play doh with her, I was like “I’m watching the game, want to watch it with me?” And of course she’s like “Uh, no, I want to play princess play doh” and I’m like “Then ask Daddy to play with you because I’m watching the game.” Which meant that Daddy got to play with a prince made out of play doh. Did I mention he also made dinner for everyone?

Poor guy. 

At least I’ve managed to get The Boy interested in basketball. He plays some, including in an afterschool club, so I’m excited to see if I can get him to switch from being obsessed with the NFL to being obsessed with college basketball. I like watching football, I guess, but I really need someone to dig on college basketball with me. The Girl says she’s really not into sports, which makes me so sad because she’s probably gonna be tall, so imagine what a great basketball player she could be! Le sigh. So, it’s all about The Boy right now. He’s agreed to watch the Selection Sunday show with me next weekend and to fill out a bracket.

Which gave me a great idea: why not encourage my fellow college basketball addicts to be come Worst Wives/Husbands Ever and obsess over the Big Dance with me? So, here’s that you’re gonna do: Download the ESPN Tournament Challenge App and sign up and create a bracket. (It’ll be blank for now because there we won’t know who’s in the tournament until Selection Sunday. If you sign up after Selection Sunday, you can work on your bracket right away.) Then, there’s a link that says “Create/Join Group”and you want to click on that, and then search for Brackets With Beth and join our group.

Is there a prize for whoever wins? No, because I’m cheap. But apparently if you do well compared to everyone else on the ESPN app, ESPN will give you some sort of prize? I have zero shot of winning that–I couldn’t even win my office pool, let alone a pool that includes the entire country–so I haven’t event looked at what the prize/s is/are.

Now go turn on your TV and watch some college basketball, and make your spouse take care of the kids! 

#EpicCaldwellVacay is finally here!!!

Posted on by Beth Caldwell

YOU GUYS! For a very long time, we’ve been planning a seriously epic vacation, and it’s FINALLY HERE!!! I’m writing this from 35,000 feet over somewhere in the Midwest, on my way to New York with The Hubs and The Kids. We’ll be spending a couple days in NYC, then boarding Cunard Line’s Queen Mary 2 to sail to England. We’re blowing a chunk of my 401K (because I’m technically retired now, so I might as well spend it, amiright? And if I end up being some miracle breakthrough of cancer science, well, I guess I’ll go back to work!) and sailing in a Queens Grill Suite. This comes with butler service. BUTLER SERVICE!!! Our butler will arrange cocktail parties for us, unpack for us, shine our shoes, serve us dinner course by course in our suite…basically, make sure we have everything we could possibly need.

The suite is called a Queen’s Grill Suite because this is a British ship, so we upper crusters don’t dine with the lesser people. No, we have our own special dining room, called the Queen’s Grill. (There is also a Princess Grill, for the not quite as fancy suites, but if you’re gonna blow part of your 401K, I mean, you might as well do it all the way.) We also have our own bar just for suite passengers, so we don’t have to drink with the hoi poloi. In addition, the suite itself has a bar, because of course it does.

The kids are looking forward to going swimming, seeing a show in the ship’s planetarium, and spending time at the kids’ club, which is staffed by child care workers who have been certified by the British government. I’m looking forward to going swimming, drinking Scotch, and dancing in the ballroom in my brand new gown on formal nights. The Hubs is looking forward to drinking Long Island Iced Teas and sleeping.

Our ship will land in Southampton on August 16, and then we’ll be taking a quick tour of Stonehenge before heading to London. Our former nanny, who’s just finished her master’s degree, asked if she could come with us (she’s paying her own way, you guys!!! Seriously, best nanny ever) and we were like “OMG SERIOUSLY YES!!!” So she’ll be meeting us at the ship in Southampton. We’ll spend a couple days in London, then take the Caledonian Sleeper to Inverness. We’ll be staying near Loch Ness for a few days, then our nanny heads home and we head to Oban for a few days (we’re staying near the whiskey distillery, because of course we are) and then finish our trip in Edinburgh, where their big festivals will be happening. And then we fly home.

I know y’all are like “OMG how can I follow along with this epic trip?” I’m glad you asked! I’ll be tweeting as much as possible, using the hashtag #EpicCaldwellVacay, and those tweets will also feed to my blog’s Facebook page. Expect lots of pictures of castles and whiskey, but I’ll also share any epic meltdowns, mine or The Kids’, because I’m keeping it real, y’all.  As time and Internet access allows, I’ll also blog about it.

YOU GUYS I AM SO STOKED!!! Oh it’s on. It’s on like Donkey Kong. #EpicCaldwellVacay has begun!

Peaches come in a can

Posted on by Beth Caldwell

This post is not about cancer. This is a classic Cult of Perfect Motherhood deprogramming post. It’s about my grandmother, who happened to have breast cancer, but that’s not what this story is about. It’s about peaches. Canned peaches, to be specific. 

Recently, I tweeted while having a blood transfusion that I had canned peaches with my hospital food brunch, and that they reminded me of my paternal grandmother, and then I thought, I should tell you all this story because it explains a lot about the sense of humor I’ve inherited from my family. And it also gives us a lesson that will help us all do a little deprogramming.

So, my grandmother was your typical 1950’s style housewife living in a small town in Oregon, and every year, she’d can her own peaches. She’d go get a bushel of them from the local growers, and do all the work that’s involved in canning peaches. Which is a lot of work, but since my grandfather loved them, she made them.

Then one year, my grandmother missed the peach harvest. You know, because she was busy raising four kids. So, she went down to the local grocery store and bought canned peaches, you know, like, the cheap store brand ones. And she brought them home, and she hid them in the cellar. And anytime my grandfather said, “Honey, how about some peaches with dinner” she’d say “Sure thing, I’ll go get them from the cellar.”

Then she’d go down to the cellar, open a can of peaches, dump them in a mason jar, screw the lid on, and bring them upstairs and say “Honey, can you open the lid for me, it’s so tight.” And my grandfather would open the jar, and they’d eat the peaches, and my grandfather would say, “Sweetheart, nobody cans peaches like you do, these are the best peaches ever.”

So, now my grandmother knew that her husband couldn’t tell the difference between her peaches and the cheap store brand canned peaches. So she was like “The fuck I’m gonna do all that work anymore.” (Except, she NEVER would have sworn, but you get the idea.) But, she also wasn’t going to tell my grandfather she wasn’t doing all this work and lose all the compliments about the peaches. So she just bought the peaches at the store that come in a can because they were put there by a man in a factory downtown. And she kept putting them in mason jars and fooling my grandfather. For, like, 30 years.

The only person who knew this was going on was my aunt, who was sworn to secrecy. My grandmother made my aunt promise not to tell anyone until she was dead. So, my grandmother passes away in her 80’s (not from breast cancer, from regular old age stuff) and like five minutes later, my aunt’s like “Dad, there’s something you need to know about your wife.” And she tells him about the peaches, and he thinks it’s the FUNNIEST THING EVER. Literally the next time I saw him, he was like, “OMG I have the best story about your grandmother.” (Except he didn’t say OMG, but you get the idea.)

When my grandfather died, my local BFF left a can of peaches on my doorstep, which made me smile. And every time I eat canned peaches, I think of my grandmother, and what a sassy, awesome woman she was. And I think, “What peaches thing am I doing because I think it matters to my family, but really they don’t give a shit?” What peaches thing are YOU doing right now?

A Very Heathen Christmas 

Posted on by Beth Caldwell

Here’s the deal with our family: we’re not religious. We’re heathens. It’s not that we don’t believe in God necessarily, it’s just that we can’t be bothered to care either way. We’re also not anti-other people’s faith, unless it involves them being a dick. Hate faith we’re super opposed to. But if your faith is about kindness and love, then you get down with yo bad selves.

Just because we’re heathens, though, doesn’t mean we don’t love Christmas. (Well, I do anyway; The Hubs is a bit of a humbug, but he grudgingly tolerates my Christmas cheer.) This is how I feel about Christmas:

 

yes, those are Mickey Mouse ears on my Santa hat.
 
Yeah, I’m basically Buddy the Elf. I freak out at the end of the Macy’s parade when Santa comes. And I decorate like crazy. My favorite part of Christmas decorations is the lights. It’s our rainy season, and it gets dark at about 4:30 these days way up here (did you know Seattle is north of Maine? Look it up) and Christmas lights make it feel more hopeful and cozy instead of dreary. 

Don’t get me wrong, I get that for Christians this is a holy day and I know the story of the birth of Jesus. In fact, I tell it to my kids. It’s important for them to know that stuff if they’re going to live in this culture. We just also tell them that whether they believe Jesus was the son of God is up to them. And we celebrate the kindness in the story–the wise men bringing Jesus gifts, the angel bringing good tidings. 

The Girl isn’t sure about Santa anymore, The Boy still believes in Santa. I think he’s worried if he says Santa isn’t real, the gravy train of presents will stop. Which is probably why he’s all “Sure mom, I’ll take a selfie with you and Santa.”

Santa asked “Where’s your selfie stick?”
 
I used to have a coworker who was Jewish and she was like, “When I moved to Seattle, everyone kept inviting me for Christmas because they felt bad I nowhere to be that day, and they just didn’t get thy it’s just a day to me.” And I was like, “That’s because we’re all heathens out here and it’s not a religious holiday for us. It’s a day to eat a lot and watch A Christmas Story nonstop for 24 hours.”

Heathen Christmas is pretty awesome. There’s presents and chocolate and we hang out all day in our PJs, and Jesus looks down on us from this picture.  

He looks pretty happy, don’t you think? 

The Cat’s Out of the Bag

Posted on by Beth Caldwell

You may remember that when I went to speak at a hearing at our state legislature last month, I asked The Boy what he thought I should tell them about why cancer research is important. As I told the House finance committee, “He said, ‘Tell them that without research, maybe even one of THEM might get sick, or even die.’ And my heart sank for a moment, and I asked him if he was scared that I would die, and he got very quiet and nodded. And the worst part of all this is that I couldn’t tell him that I’ll be OK, because that would be a lie.”

When I first thought about going to the legislature, I thought, “Maybe I should bring The Boy.” The Girl is still too young for such an outing, but at 8, The Boy is curious about my advocacy work and wants to participate. When I told him I might be going to some protests about cancer research funding, he said, “Can I come? Will you get arrested? I want to go to jail with you!” I laughed at him because A, I’m not getting arrested, and B, if I was, there is no way in fuck he’s getting arrested with me. Maybe if I live another 10 years and he’s an adult, but we all know the odds of that happening.

But a trip to a committee hearing seemed like it could be a good lesson for him. I want him to learn about speaking truth to power, and using our words and our ideas to convince people. These are important values for me, and I know it would be a memory that would stick with him, to watch his mom doing that.

On the other hand, I knew that for my testimony to be effective, I was going to have to speak about my prognosis. Up until now, we’ve carefully avoided that subject. I’ve told him things like “I’ll always have cancer, so I’ll be having treatments for it for the rest of my life” but we haven’t talked about the whole “rest of my life” part being a lot shorter than he expects. A sunny Thursday afternoon in a committee hearing didn’t sound like the best time for that conversation either. So, I gave up the idea of bringing him along, even though he really wanted to go.

Fast forward to after the hearing. He gets home from daycamp and he asks how it went, and I told him it was awesome, and The Hubs, without thinking it through, says “I recorded it so you can watch Mommy talking at the hearing.” Uhhhhhh…you mean the part where I repeatedly mention that I will die of my disease? But the cat was out of the bag, and I thought to myself, “He’s aware that death is a risk with cancer, we know that from what he told me to tell the legislators. Maybe it’s time.”

So I let him watch it. And when he heard me say “I will die” he turned to me, and said, “Mommy, are you going to die?” And I said, “Someday, sweetie, but not today!” in as cheerful a voice as I could muster. But being the child of a lawyer, he knows bullshit non-answers when he hears them, so he said, “But are you going to die of cancer?” And I said, “Probably…but, I have a very smart doctor, right? And he’s taking good care of me.” And he said, “OK” and his little ADHD brain moved onto other things.

But at bedtime that night, as I was tucking him in, he said, “Mom, I’m going to miss you when you die.” And I said, “Oh sweetie, I want to hug you right now.” And we hugged while I pulled myself together and I said, “We all miss people when they die. I miss my grandparents very much, and I know Nana and Papa miss their parents too. It’s normal to be sad when someone dies. But you know, we will always have our memories of them, so they’re not really gone.” And that seemed to bring him some comfort, and we hugged again. I walked out of the room, down the stairs, and halfway down the hallway before collapsing in a puddle of sobs on the floor.

But the thing is, I knew this day would come someday, when he was big enough that we couldn’t really hide it from him anymore. He figured out the Easter Bunny a couple years back, and when that happened, we got him excited about participating in hiding the Easter eggs for his little sister. And now that he knows Mom will probably die of cancer, he’s excited about the idea of coming to a die-in with me, and talking to elected representatives about funding cancer research to save his mom. He’s ready to be a participant in making the change . I didn’t know if I’d live long enough to see this happen, and even though it breaks my heart to see him scared and sad, it fills my heart with joy to get to see him reach this milestone.

Speaking of die-ins, a few of us in Seattle are planning one for here in town in the not too distant future. If you’d be interested in helping out with the planning (it’s not easy for terminally ill people getting chemo to organize an event, so we could use the help!) or attending it, drop me a note at cultofperfectmotherhood@gmail.com.

The Narwhal

Posted on by Beth Caldwell

The Boy’s school is all about project-based learning, and this year, they did a big project on whales. Each kid picked a whale (The Boy chose the sperm whale, which had me doing my best to hold in the giggles, because I am actually a 12 year old boy inside) and they wrote reports about them, and they went on a whale-watching field trip, and in art class, they made paper mache whales. Now, even though The Boy’s whale was the sperm whale (snort), somehow we ended up bringing home a 4-foot-long narwhal at the end of the year, the narwhal being perhaps the only whale that makes me snicker even more than the sperm whale.

This is what the narwhal’s fin looked like when it came to our house:  

I’m not sure how it was injured, but when The Hubs first told me about the narwhal, he said, “How would you feel about us bringing home a huge paper mache narwhal with a broken fin?” And I was like “A what?” And then there was our poor injured narwhal friend, riding around in the minivan. Luckily, my oncologist and his wife (also a doctor) came over to hang out, so we had two highly skilled medical professionals available to repair him with packing tape. The Boy served as the anasthesiologist and The Girl served as the nurse. She’s good with a blood pressure cuff. I’m pleased to say that the procedure was a complete success.

Isn’t it beautiful?

  
For several days after the end of school, the narwhal rode around in our minivan with The Hubs. Because, I guess the narwhal likes going on outings? I mean, who doesn’t, really? For example, when I went in for a blood transfusion, I took a selfie in the car, and you can actually see its golden horn in the background. YES, THE NARWHAL PHOTOBOMBED ME.
  

Still, it’s not awesome to have to live in a car, so I brought the narwhal into the house while cleaning out the minivan, and now we’re trying to figure out where to put it. I was worried that my friend Natasha, who’s been helping with decluttering my house (do you live in the Seattle area? You should hire her, she’s ridiculously good at this) will not be pleased to see that we’ve taken in a 4-foot narwhal…except, she’s awesome, so no, she thought it was fucking AMAZING that we have a narwhal living in our house now. In fact, I bet by the time you read this, she’ll have helped me hang it from the bathroom ceiling or mount it over the fireplace or wherever it ends up.

Although the narwhal is clearly happy in its new forever home, there is one more thing the narwhal needs: a name. And now I turn to you, dear readers. I’m too cheap and too lazy to run a genuine contest here on the blog (still haven’t monetized this bad boy, I’m clearly doing blogging all wrong), but whoever comments below with the best name for the narwhal will get a shout out from me all over Twitter and Facebook, and the knowledge that you’ve done a great service to a majestic sea mammal. 

In conclusion, I leave you with a classic of the internet to help inspire you as you ponder what the narwhal should be called.

http://youtu.be/VhujEQhg764

Summer Loving

Posted on by Beth Caldwell

School’s out for summer! School’s out forever! OK, not forever, but it may feel like it this summer, because it’s my second summer of active treatment. Last summer, you’ll recall, was the end of my first set of chemo, followed by mastectomy recovery. This summer, it’ll be chemo all summer.

I’m noticing that since I started chemo, The Kids have been more clingy. It’s to be expected–they can tell I don’t feel well. I’ve had to have two blood transfusions now because my body’s been gutted out by the chemo. I just have a lot less energy than I did before going back into treatment. It’s impacting my mood a bit too. I’m sad more, which is what always happens to me when I don’t feel awesome. And The Kids sense that, and want to spend more time with me.

Fortunately, we’re finding ways to make that happen even when fatigue keeps me in bed most days. Recently they started coming to our bedroom to cuddle with us in the mornings when they wake up. Which isn’t awesome when they wake up before 6, but most mornings it’s at a reasonable hour. We’re doing a lot of reading with them–I’m reading the Harry Potter series to The Boy, and The Girl really loves a book that my cousin gave her called Rosie Revere the Engineer. (I love it too, definitely one to check out.) We’re also watching movies together more often.

I know it seems lame to spend so much time indoors when the weather is nice, but that’s part of treatment life. I get out and about when I can, but with chemo happening almost every week, there are at least a few days a week when all I do is lie around. But the upside to all this lying around is that I get a lot more cuddle time than I otherwise would, while reading all those books and watching all those movies. It’s actually pretty awesome feeling all that love from The Kids.

I’m hoping as treatment goes on and I start getting into a better routine, I’ll be able to plan some outings for us around my fatigue days. The Boy asked if we could go to Great Wolf Lodge (did you know there’s a bar inside the splash park? OH YEAH!) and I’ve ordered a mastectomy swimsuit.  I’ll probably spend my time just laying near the wave pool, and shouting encouragement to the kids.

This is parenting with continuous illness. It’s not parenting the way other people do it. My kids don’t do organized sports and I don’t spend my weekends at soccer matches or little league games, because I’m too tired, and The Hubs has too much on his hands without adding stuff like that to the mix. We watch a lot of TV and read a lot of books and other people take the kids for play dates. It’s just simpler and slower than most families, and that’s OK.

Now, the interesting part about this is that the latest parenting trend is the 1970’s Summer. Have you read about it? The idea is that when we were little in the 70’s and 80’s, our parents didn’t sign us up for 4,000 activities. They just said “Get a popsicle and go outside to play” while they watched their stories. Well, now all the cool moms are doing 1970’s summers with their kids. Helicopter parenting is soooooo five minutes ago. How convenient for me, who literally can’t helicopter parent even if I wanted to, that the hot new thing in parenting is exactly what cancer is forcing me to do! 

You know, even before cancer, I was the type of parent who sat around with a drink shouting to my kids to go play in the ditch with their friends. So it’s not like this parenting style is actually that huge of a departure from what I would have chosen. But knowing that others actually CAN choose, and I can’t…I don’t know, it’s just rough. It’s getting harder and harder to read parenting blogs for me, honestly, because I see other moms agonizing about and defending their parenting choices, and I literally can’t be bothered to worry about most of that stuff anymore.

I never knew when I started writing this blog about the Cult of Perfect Motherhood that I’d end up with this particular perspective–that I’d see exactly how ridiculous it is to obsess over the things that modern middle class American moms obsess over, because terminal cancer has put it into such stark relief. It’s pretty powerful deprogramming…but I definitely wouldn’t recommend going about it this way.

Passing

Posted on by Beth Caldwell

I’m part of several mom groups, because finding support from other moms is seriously helpful. Not all mom groups are a good fit for everyone, but when you find one where the other women share your values, it’s pretty empowering.

I hadn’t talked about my cancer in one of those groups until recently. I find that when I disclose that I have cancer, and that it’s terminal, people react in predictable ways. There is a lot of “oh, I’m so sorry, how can I help, I wish I could hug you” kind of stuff, because most people are incredibly kind. Just, seriously, amazingly, beautifully kind. I suppose if I was in a group and they didn’t react that way, I’d know I was in the wrong group and I should run away from them.

After the initial outpouring of kindness, the secondary reaction is usually “You put my silly problems in perspective, I feel bad complaining about my challenges because they seem so minor in comparison.” And that’s when I wish I had kept on passing as a regular mom, one who doesn’t have a terminal illness. Because, I don’t want them to feel like they can’t talk about their struggles in front of me.

Folks who are different in a way that makes them “the other” often pass in our society, especially if their difference is one that will lead to oppression. It’s why gay folks sometimes live in the closet, and light skinned black folks sometimes hid their African ancestry in the era of slavery and Jim Crow. If lynching is something that could happen to a group you’re a member of, hiding that identity from the world makes a hell of a lot of sense. But there is danger in passing, too. If one is found out, the lynching can be even swifter.

Obviously being someone with cancer is nothing like that. Nobody lynches people for having cancer, or for pretending they don’t have it. Instead, my cancer merely makes people look at me differently than they did before they knew I had it. I feel like once they know, they don’t see me anymore; they just see the cancer. It’s written all over their faces. It’s incredibly isolating, actually, and sometimes I just don’t want to be “that mom,” the one the other moms pity, the one who makes their problems seem petty in comparison. I just want to be part of the gang.

I used to feel the same about The Boy’s prematurity. When people would ask me how old he was, and I knew the actual answer would mean I’d have to explain that he was born 3 months early, I’d sometimes just tell them his corrected age (that’s how old he’d be if he’d been born on his due date) instead of his actual age. Sometimes I wasn’t up for having that conversation, telling that story; it was just easier to pass as a regular mom, and hide my preemie mom identity. It was a relief when he was caught up developmentally and growth-wise with his actual age peers and the “how old is he” question didn’t lead to uncomfortable questions anymore.

I wish we lived in a world where being different wasn’t so isolating, where our differences didn’t separate us. I also wish I could win the lottery and buy a bungalow in French Polynesia, but I’m not gonna hold my breath that either will happen. So, I’ve learned that coming out as someone with a terminal illness, rather than passing as a regular mom, means that I need to know how to re-establish the sense of community that my difference can destroy.

I do that by reminding the other moms of what we have in common: a mutual hatred of doing the laundry; children whose tantrums make us want to pull our hair out; sleep deprivation. And I also specifically say, every time, that it’s OK for them to bitch about what’s bothering them. Parenting is fucking hard, for everyone, and everyone should have a space to complain about it when they’re struggling, a space where they can ask for support, even if others in the group are struggling in different ways than I am. If my illness helps them feel like their lives aren’t so hard, I mean, that’s fine too. But I sure as shit don’t want to add “I feel guilty for complaining” to their list of stressors, and I don’t want to feel like The Other.

I still pass as non-disabled sometimes–at the grocery store, at parties with people I don’t know that well, that sort of thing. But where I am part of a community, I try to be as open about who I am as possible, and encourage the rest of the community to do the same. Coming together to celebrate our sameness, in spite of our differences, makes us all stronger, and makes all our lives richer.

Your IEP Team Doesn’t Hate Your Kid

Posted on by Beth Caldwell

You guys, we’re coming up on annual IEP review time for my kid, and maybe for your kid too. And so, I have something I want to say that might piss some of you off if you have a kid with a disability. But as a blogger I follow said recently, if you don’t like it, then off you fuck.

In all my years working in the field of special education law, I can count on one hand the number of times that I met teachers or other school personnel who hated kids with disabilities. Sure, every profession has its sociopaths, but the pay in eduction is so low, and the amount of power wielded is so small, that sociopathic special education professionals are pretty rare.

And yet, I can’t even begin to count all the parents I spoke to over the years who were convinced that the special education staff at their school hated their child. Because, the parents would ask for something that they believed their child desperately needed, but the staff would refuse to do it, or fail to do it. What other explanation could there be for school staff to refuse help to a struggling child? It must be hate, right?

No. No no no no and no. Just, no.

And this is a huge problem, because if you jump to the conclusion that hate of children with disabilities is the driving motivation behind a teacher’s actions, you’re not going to be able to overcome the real challenges that are preventing that teacher from helping your child. You’re also likely to say something in anger about that imaginary hate that will ruin your relationship with the person who is taking care of your child 6 hours a day, 5 days a week, 9 months a year. Which is a really bad thing. Trust me on this.

So, let’s talk about what might actually be going on, and see if we can get around the problems to a solution, shall we?

1. Schools are fucking broke. This is first on my list because it’s definitely the #1 reason that I came across when dealing with conflicts between parents and schools. Schools are so broke that there have been court decisions in several states, including mine, saying that the state’s underfunding of schools is illegal. There’s a reason why your school’s PTA is always asking for more money: they need it just to keep the school afloat. Lots of schools are cutting staff positions in areas that particularly hurt kids with disabilities, like school counselors, occupational therapists, and nurses. On top of that, the federal funding out there for special education still doesn’t cover the whole cost of educating kids with disabilities. Shit’s fucked up, man, and none of that is because your kid’s teacher is an asshole. It’s because politicians aren’t doing their jobs.

That said, federal law doesn’t allow schools to deny services that kids need to receive a free appropriate public education just because a school is broke. So, if there is a service in your kid’s IEP or 504 plan that they aren’t getting and the school uses “we’re broke” as an excuse, I mean, I’d politely call BS on them. I’d also be first in line to help organize a fundraiser, because again, it’s not the school’s fault that they’re broke.

My son’s school is in a crazy affluent neighborhood that I don’t live in, and our PTA raises a crapload of money compared to most PTAs, some of which goes to things like extra help for kids with disabilities or other learning challenges. If your PTA isn’t spending at least some of its money on services for kids with disabilities, who are some of the most vulnerable kids in school, your PTA needs to be educated about why they should start. Remind them that things that help kids with disabilities also help other kids too–a school counselor is a good investment for all kids. Same with a nurse, an instructional assistant, etc.

2. They don’t know what you know. You know your kid better than anyone, even their teacher. Don’t withhold information about what’s going on in your kid’s life, or what tricks work on their problem behaviors at home, or what areas of struggle you’re seeing when they do homework. How can they help if they don’t know the whole story?

So, tell them you have cancer and your kid is scared about his mom being sick, and it’s making it hard for him to focus. Give them a copy of the allergy testing that shows what foods are dangerous. (I can’t tell you how many times parents refused to do this. It’s the dumbest self-sabotaging behavior I can think of.) Explain how hard it is for your kid to understand the word questions on his math worksheet and that it takes him 20 minutes to do 2 word problems. Bombarding them with dozens of emails isn’t helpful, but sending relevant information (and with a “Thank you for working so hard to help my kid” at the end of it) will help the teacher help your kid.

3. They don’t know the rules. And often, neither do parents. Because they’re complex and they change whenever new laws or regulations come out, which happens every so often. And because it takes time for new people to learn the ropes. I had a colleague who once told me that whenever there was a change in his state’s public employee pension plan that would encourage people to retire, he scheduled extra trainings for school personnel on disability laws. He said that sometimes he’d suddenly see a huge increase in complaints from parents, and he realized it was happening after the old hands left with their years of accumulated knowledge, and new people came in who didn’t know the ropes yet. (That guy is a genius.) In addition, lots of times parents think their child is entitled to something they’re not actually entitled to. Remember, schools are broke, and although they want to help your child, they probably aren’t going to be able to provide extras that aren’t legally required. They just don’t have the resources for that.

So, invite in an expert to speak to your school’s staff about the rules that apply to kids with disabilities, and to parents too. A lot of districts now have a special needs PTA, and that’s a great venue for getting both parents and school personnel on the same page. Often state and federal agencies will send someone to speak to you for free, and so will non-profit groups that support people with disabilities. That used to be my favorite work thing to do when I was still a working lawyer–to do presentations for groups about Section 504, because it helped prevent conflicts.

4. They don’t understand your child’s disability. This is more rare, and tends to be limited to rarer disabilities and/or newer staff, but it does occasionally happen. If your child’s disability is particularly unique, you’re gonna want to pull some medical literature out for the staff and share it with them.

5. You’ve already alienated them because you hadn’t read this post yet. I’m looking at you, parent who tried to get the special ed teacher fired because she wouldn’t provide summer tutoring to your gifted daughter with ADHD who’s already acing all her classes. Teachers are people. They’re patient to a fault, but they’re not going to stick their neck out for some entitled asshole who tried to get them fired when they were just doing their job. Be a grown up and apologize, and bring treats to the next IEP meeting. Because you’re a lady, assface. And because it’s what’s best for your kid.

I guess what I’m saying is, put yourself in their shoes, and see if you can’t figure out a way around the roadblock that is preventing the school personnel from giving your child what they need. You might be surprised at what you can accomplish.