The other “c” word

Me, the mom2 Comments

Sometimes, it can be really helpful to talk about your problems.

My husband recently discussed our daughter’s cancer with the gas company and wouldn’t you know it, the next day a crew came out and fixed the gaping hole they had left in our yard a year ago. Never mind that they should have fixed it anyway or that they had been promising to for months. Tragedy got the ball rolling when nothing else worked.

Although effective, his strategy did cause some confusion when I asked how he had changed the company rep’s mind.

“I used the ‘c’ word,” he said.

I stared at him.

“You called her a c—-t?” I asked.

His eyes went wide.

“I told her our daughter has cancer.”

Oh, yeah. That “c” word.

Three years ago, our daughter was diagnosed with neuroblastoma at the age of 18 months. A type of pediatric cancer, neuroblastoma either grows aggressively or just lingers, sometimes taking years before it dies off on its own. The doctors are hopeful our Charlie has the latter. Already she has endured 12 rounds of intensive chemotherapy, six rounds of less intensive chemo and six surgeries. She is now off treatment and the tumors aren’t growing. As a family we’ll be holding our breath for a few years but as far as having your child get cancer goes, we are the lucky ones. (Don’t tell the gas company, though. They owe us.)

Please understand, I am not trying to make light of this disease or anyone’s struggle with it. It’s just that I’ve had a long time to deal with this, and crying inconsolably on the floor curled in a fetal position gets old after a few weeks. I’m also aware that any time I talk about Charlie’s cancer, I’m really only telling part of the story. She is the one who has been fighting this and one day she’ll be able to tell the story herself, no doubt much better than I can. But for right now, I’m the one who can type and the only perspective I can share is my own.

In the beginning, I didn’t want to talk about it. Talking about it made it real and I didn’t want it to be real. It was easier to tell a few friends and family members and have them relay the news to those who needed to know.

Once she started treatment, her condition was obvious to all but the criminally stupid. She lost her hair and was painfully skinny. Of course, logic is no impediment to some, such as the old man smoking a cigarette in front of her doctor’s office who reprimanded me for her appearance.

“Why would you shave that poor child’s head?” he demanded.

I looked pointedly at the sign behind his head that read “Pediatric Oncology and Hematology.” Nothing. Tempted to say, “She lost a bet,” I instead explained in small words what should have been obvious. (Why, you might ask, would anyone smoke in front of a children’s cancer clinic? Sadly, her doctors share a building with cardiothoracic surgeons, so it’s not unusual for the pediatric patients to run a gauntlet of carcinogenic smoke to get to treatment. Whoever came up with that brilliant office sharing arrangement should be shot.)

But if I was out without her and saw people who didn’t already know, I wouldn’t tell them. It just seemed like an awkward thing to bring up in, say, the aisles of the Food Lion. (“Jack just started transitional kindergarten and Charlie is battling cancer. OMG, is that the new Hamburger Helper?”) The few times I did share the news were — bad. People got upset, understandably, and I felt lousy for ruining their day. Also, once people know they feel inconsiderate talking to you about anything else. Trust me, sometimes you really want to talk about something else. Anything else.

But once she was through the worst of her treatment and the tumors had stopped growing, it became easier to talk about her condition. Perhaps it was because I didn’t feel the need to escape it as much myself, and it’s easier to share good news than it is to punch people in the gut with tragedy.

Also, I am proud of her.

I shy away from the term “cancer survivor.” For one thing, she’s not in remission, but also it seems like an insult to those who have passed away from the disease. There were many amazing children she met during her treatment — Gabby, Carter, Pieter, Miranda — who were just as fierce in their struggle and endured more in their tender years than any human being should in a lifetime. They didn’t lose their fight against cancer. The treatment stopped working. The cancer found a new way to grow. Unfortunately, cancer is a powerful, indiscriminate dick — it wouldn’t pick on children otherwise — and has an enormous capacity to change the rules and overcome whatever is thrown at it. These children didn’t lose their struggle any more than Charlie won hers. She simply got lucky.

And yet…

…and yet that child put up the fight of a lifetime. Before she could even take her first steps she had been pumped full of poison and poked with needles and sliced open in three different places. She endured weeks of confinement to a hospital bed when she should have been learning to walk, vomited for hours when she should have been figuring out her favorite foods.There were times when I looked at her and felt like saying, “It’s okay if you want to give up. I don’t want you to, but I would understand.” But this baby, this child in diapers who slept with her fingers entwined in my hair every night and cried when the end credits rolled on “Mickey Mouse Clubhouse,” found some way to keep going.

You better be damn straight I am proud of her.

Sharing her condition also helps explain her developmental delays. Although she has recovered physically from the chemo and is the size of a strapping 5-year-old, developmentally she is somewhere between the ages of 2 and 3. Or, in the words of a little turd at her ballet school, “She talks funny. She’s wearing a diaper!” (“You talk funny!” I wanted to shout. “And your mother is an alcoholic whore!” Instead I chirped, “She’s just catching up!”)

There are times when I would like to talk about it even more. For example, those instances when she’s throwing a tantrum on the floor at Target — she is mentally a 2-year-old, after all, and 2-year-olds excel at tantrums — and I get the stink eye from some old bat who forgets what it’s like to be a parent. In those moments I would love nothing more than to shout: “She has cancer! What’s your excuse for being socially awkward?” And then maybe spit on the floor. I don’t know, that feels inappropriate. I could probably get over it, though.

But it was only recently that I discovered the best use for sharing her story.

Even though I can be private about some things — say, my child getting treated for cancer — for some reason complete strangers feel free to tell me things they really, really shouldn’t.

“I always wanted kids,” said the cashier at the Container Store to me one day, for no apparent reason. “But my first husband didn’t want them and then my second husband, well we tried and tried and then it turned out he was sterile.”

Um, I’ll just take my receipt. Please?

I am convinced it has to do with my red hair. When you are a redhead, you always remind people of someone they know. (Ugh, and it’s always the ex-wives. Ginger ladies, please, stop getting divorced so much, I’m begging you.) As a result, they are always taking small talk to places it just doesn’t belong when you are around.

But now I have a wonderfully powerful weapon against that, which I only realized on a recent outing to TCBY with Charlie.

We had barely taken our seats when the bearded youngster behind the counter started talking.

“I almost didn’t make it to work today,” he said.

“That’s too bad,” I said.

“Yeah, it was really bad,” he continued. “It was, like, emergency bad.”

I cringed.

“My girlfriend was bleeding everywhere?”

Stop.

“And we thought she might be having a miscarriage?”

It.

“We had to go to the hospital and everything.”

Right.

“We really want this baby, which surprises everyone because we are so young.”

Now.

“I’m really sorry,” I said and don’t get me wrong, I was sorry. It just seemed like there might have been someone more appropriate for him to talk to about this. Someone who knew his first name, for example.

He nodded.

“We won’t find out until Monday whether she lost the baby.”

And then it hit me: fire with fire.

I turned to him and pointed at Charlie.

“She has cancer.”

He stared. Silence ensued. A cricket rode past on a tumbleweed  and I went back to eating frozen yogurt with my daughter.

Yes, talking about your problems can be pretty helpful indeed.

 

This post originally ran a year ago. I am rerunning it now to mark the one-year anniversary of my attempts at blogging. Many thanks for everyone’s kindness and support.

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OMG Yes, Complete Stranger, I Would Love to Hear What I’m Doing Wrong as a Parent! Thank you!

Me, the mom2 Comments

This is, WOW, awesome. Here I thought I was just running into the Food Lion to pick up bananas and milk, but thanks to you, Lady I’ve Never Seen Before, I also get a detailed breakdown as to why I suck as a parent. SCORE!!!

It’s super sweet of you to tell me that children shouldn’t be treated as servants, since you happened to overhear us talking about chores. I mean, some people would say expecting children to help around the house teaches them responsibility and self-respect but I could be wrong.

If I’m lucky, in the next aisle I will be informed that today’s parents spend too much time on their phones. Bonus points if I am not actually looking at or even holding a phone. Because sometimes parents need to be reminded of how much they suck balls even if they are not doing anything obviously wrong at the moment.

I have my fingers crossed that we’ll run into someone at the checkout who can tell me children should be outside playing, not running errands with their parents. What was that? You mean to tell me when you were growing up you played outside unsupervised all day, rode your bike around the neighborhood and only returned home when the streetlights came on? That’s freaking amazing. I mean, I did that too but then this was before mass media broadcast stories almost daily about kids being abducted, trafficked and/or slaughtered.

What’s that? In your day you weren’t afraid to give your kids a good “whupping” if they acted up? COOL! Sounds great. You must have only had to do that once if it was so effective. And I’m going to guess you smoked at the dinner table and let your kid sleep in a crib coated with lead-based paint.

Yes, please, tell me I’m being overprotective by escorting my 8-year-old daughter to the restroom. I’ll be sure to ignore the other stranger who tells me it’s reckless to let my 9-year-old son stand directly outside the restroom door to wait for us. I mean, yes, kids certainly are snatched from under their parents’ noses when they are less than five feet away. Not when they are on their bikes riding around in parts unknown, though. Under those circumstances the Magical Shield of Childhood Innocence protects them.

Please tell me, as my children and I make plans to go to the park later, that they should be going on their own. Although, do be a sport and let me know if your friend/neighbor/fellow parenting expert plans on calling the cops on me if I let my children play unsupervised on my own front lawn. I want to make sure my makeup is perfect for my child endangerment mug shot.

What’s that? Your children never quarreled because just one look from you made them stop in their tracks? Amaze balls! Did they, by any chance, wait until your back was turned and then proceed to pound the crap out of each other? I seem to recall scenes like this from my own childhood but I could be wrong.

Please, please, please could you tell me more about how parents are raising a generation of whiny, overprivileged, self-centered monsters? Because if children were raised so well in the past, I’d like to know how we ended up with our current Congress.

Wait a minute, are you saying you don’t even have kids but your expertise exceeds mine? Well smack my nuts and call me Matilda. Your gifts are truly astounding.

Seriously though, this unsolicited advice really helps me up my parenting game. To have someone tell me what I’m doing wrong, especially when it is the exact opposite of what another concerned random f**kwad just told me, provides me with such clarity and insight.

If you have the time, could you please give me a vague but virulent assessment of what the “so-called experts” (i.e., men and women who study child development and have learned more in the last 30 years about how little peoples’ brains work than was previously known in the entire history of humankind) are getting wrong? Because that would just, like, make my g*d**m, f**king day.

Baby showers and obscene cupcakes

Me, the momLeave a comment

The following is about baby showers but features some adult content. If you are easily offended, in particular by references to genitalia, PLEASE don’t read it.

My 7-year-old daughter recently got married. It was a tasteful, understated affair that took place at recess. The groom is a sweet young man who recently moved to the States from India. He talks very little. She talks all the time. They make it work.

While they’ve yet to sort out living arrangements, I have already met the in-laws and even attended a baby shower for the groom’s mother, who is expecting another son in late May.

The shower was beautiful and full of tradition. The mother is one of those women who actually glows during pregnancy, unlike those of us who spend all nine months either vaguely or violently nauseated and craving forbidden deli meats.

The men and women wore traditional dress, music played, flowers perfumed the air and a feast was served up buffet style. There was a ceremony during which guests conferred blessings on the expectant mother and not once did someone microwave a fun-size candy bar in a diaper and make everyone guess what kind it was.

I couldn’t help to contrast this with a baby shower I recently helped organize. Although most of the women showed Southern flair and ingenuity in terms of decorations and food, my own contributions were less than stellar.

The following is an approximation of the group chat I was involved in to determine dessert offerings:

Cupcakes or cake?

Cupcakes.

Since she is having a boy, we should make her cupcakes with little penises on them. (Okay, that was me.)

Yes!! But make them uncircumcised. (This from a mama who really, really, really hates circumcision and was trying to dissuade our friend from making the snip.)

How about some of each? That way she can have a visual.

Then the woman doing the actual baking sensibly interrupted our musings:

I can’t make penis cupcakes. That’s a little too hard.

That’s what she said! (Okay, that was me again.)

I could probably make a large penis-shaped cake.

Wait a minute, you can’t make cupcakes with penises on them but you can make a penis cake?

Yeah, I have this cake mold shaped like a penis.

Do I want to know why?

One of my friends is obsessed with penises. She says she’s a gay man trapped in a woman’s body. So for her birthday I made her a penis-shaped cake.

Riiiggghtt.

In the end, the party featured a cake with blue frosting and a marzipan teddy bear on top. We played silly shower games, such as tasting baby food and trying to figure out which kind it was. Then we drew encouraging messages in Sharpie on a pack of newborn disposable diapers. Of course, by then we had drunk some prosecco on the mom-to-be’s behalf and, since she is originally from Ukraine, we looked up obscene exclamations in Russian on our phones and copied the Cyrillic letters across the bewildered faces of Elmo and Big Bird.

Look, I’m not saying there’s one “right” way to do a baby shower. I just really hope my daughter’s in-laws don’t read this blog entry or she could end up divorced by her eighth birthday.

No, you really don’t have to “enjoy every minute” of motherhood.

Me, the mom2 Comments

It happens way too often.

Every day, somewhere in suburbia, an exhausted, unshowered mother wrangling one or more small children is confronted by a thoroughly rested, impeccably groomed older woman and told to “Enjoy every single minute! It all goes by so quickly!”

Whenever this happens to me, I am tempted to reply:

“Really? Every minute? How about when I am digging vomit out of my ear at 2 a.m. while my sick child cries in anguish and her sibling comes running into the room stage whispering, ‘Did she barf again? Where is it? Can I see it?’ Is that your idea of a good time? Is it, Brenda? IS IT??”

Of course I would never respond that way. And to be honest, I understand what they are saying, even though it is — in my opinion — a dumb thing to say to someone who may be having an incredibly difficult time responding to the demands of parenthood.

Most parents I know are appropriately grateful for their children. They understand there are plenty of people who want children but can’t have them and many who have had children and lost them. They are aware these people would gladly give their right arms to experience even the hardest parts of parenting.

But you can have gratitude and still find the experience of parenthood overwhelming at times; the two are not mutually exclusive. Spending every single minute in a state of grateful maternal bliss is mentally and physically impossible, at least without a lobotomy.

Also, it’s incorrect to suggest time passes more quickly when you have children. The good times do. The hours spent cuddling and laughing, playing games and reading stories are over way too quickly. The birthdays and Christmas mornings are finished before they start.

But the hard times drag. When your children are ill or in pain, when they are scared or sad, it doesn’t feel like time is flying. When you haven’t had a decent night of sleep in years, can’t remember what it’s like to eat a hot meal uninterrupted, or think of hygiene as spritzing yourself with body mist, parenthood stretches ahead of you in an interminable purgatorial sentence.

My children are 7 and 9. When I look back at their baby photos, I am amazed at how much they have changed over the years. But not once have I thought the time has whizzed by or exclaimed, “Hot damn, those days when you used to crap your pants and then smear the walls with your feces were over way too quickly!”

I may get slightly sentimental when I hold up their newborn onesies, amazed that they were ever so tiny. I may miss those baby giggles and what it felt like to rock them to sleep in my arms.

But I also remember the hard parts: the hours of colicky crying, being constantly on call, the lack of sleep and free time, the frustration of not being able to understand what they needed.

I’m sure that as my children grow, the memories of the hard times will fade. When they move out and on with their lives, and all that longed-for free time comes my way, I bet I will miss even the worst times. By then I’m sure it will feel like their childhoods went by in the blink of an eye.

However, I vow never to accost a bewildered young mother and tell her to enjoy every minute. Because if she’s having a bad day, she doesn’t need to feel guilty for not enjoying it. If she’s having a great day, she doesn’t need to be reminded that it will all be over soon.

Instead, what I find myself telling young mothers is, “Hang in there. You are doing great.”

Which may or may not be a compliment coming from a woman with mismatched shoes, a smear of poster paint across her forehead and a crazed glint in her eyes.

Six holiday traditions we will be skipping. From now on.

Me, the mom2 Comments

1. Waiting in line to see Santa

Between so-called “Christmas Creep” — the season starts in October — and the fact that every retail outlet now has a Santa, if you find yourself waiting in line to see the Big Guy, you will know you are doing it wrong.

This year my children have seen Santa at the mall, the YMCA, the park, the pet store, and even stumbled over one in a hotel lobby. Each time his handlers were practically grabbing children as they passed by, so desperate were they for visitors.

2. Breakfast with Santa

Just as waiting in line to see Santa makes no sense, neither does paying for the privilege. This is particularly true at an event such as “Breakfast with Santa,” as it involves multitasking, a skill set most children have yet to master.

We recently paid big bucks to attend such an event and regretted the decision pretty much the second we walked through the door.

The shrieks of toddlers assaulted our ears as we shuffled to find an empty seat in a dance studio crammed with more than 100 people. Families stood like starving dogs by the buffet table waiting for pancakes that were being produced in a back room at the rate of four an hour.

To help us pass the time, the organizers had helpfully left out coloring sheets of Christmas scenes, along with a cup filled with crayons. Our cup contained six black crayons and an orange nub, which made for some macabre-looking pictures.

Still, if you really, really must have breakfast with Santa, may I suggest asking ahead of time whether live entertainment will be provided. If the answer is yes, run.

Because the last thing our jolly morning meal needed on top of crying children, people knocking into each other whenever they moved, and a perky MC shouting into a microphone (yes, shouting into a microphone) was a troop of pre-teen girls taking up precious space and oxygen with a dance performance to “Feliz Navidad.” But that’s exactly what we got, followed by a bizarre scene from The Nutcracker, in which the prince carried a cell phone and my son added to the narrative by calling out, “Yay, Clara! You go, girl!”

3. Any sort of “History of Christmas” presentation.

Many historical societies will stage these events, which can be great if done well or mediocre if done where I live.

To be fair, any historical society is really going to have to up the ante if it wants to capture the interest of people under the age of 20 because Christmas has never been more showy, glitzy, and over-the-top-fan-f**king-tastic than it is right now. Children accustomed to light shows and dancing reindeer might find a look back in time more alarming than cheer inducing.

We paid $40 to attend such an event in a local historical home that began with a 20-minute lecture on how Santa’s costume has changed over the years. Seriously.

We then watched two women with outfits from different centuries prepare to roll out Christmas cookies on a cutting board after rubbing it down with Chlorox disinfecting wipes. You know, like the pioneers.

A young volunteer who had removed the rings from her nose but not the purple from her hair directed my children’s attention to an old mantelpiece from which hung a sagging line of striped socks. She explained that Santa filled the stockings with fruit and nuts.

My son’s eyes went wide.

“Because the kids were bad?” he asked.

Oh these first world children. The volunteer explained that bad children received switches. She then had to give a brief explanation of corporal punishment to my wide-eyed children, who need only the threat of losing their iPads to cease acting like boneheads.

On the car ride home the children were subdued, occasionally asking questions such as “Did they have enough to eat back then?” suggesting they saw the presentation less as an interesting look back in time and more of an “Aren’t you lucky you were born in the 21st century?” teaching moment.

4. Attending a performance of The Nutcracker

Although this Christmas ballet is an annual treat for some families, I avoided taking my kids until this year because I’ve seen it one too many times and just the opening notes of the overture are enough to make me want to shove a sharpened candy cane through my eye balls.

Still, it’s important to take children to the theater if you can swing the price of admission because they need to learn how to be bored. And culture. They need that, too.

This year I bought us tickets for an abbreviated version staged by a local ballet school. Unfortunately, the producers abbreviated the ballet by cutting out some important details, resulting in a performance that can only be described as Dadaesque, despite a heavy-breathing narrator trying to fill in the blanks.

(“Is that God?” my son asked when the man’s voice first blared through the sound system. “God wouldn’t have left so many holes in the plot line,” I replied.)

Instead of ending the Stahlbaums’ party by showing guests leaving, the producers simply shut off the lights. When the lights came on again, the stage was inexplicably a snowy forest, where apparently the Cure was getting ready to play because troops of children in black were dancing around.

Then, holy crap! there’s Clara on a sofa. In the woods. Only then did the mice and toy soldiers fight it out. And then there were dancing snowflakes.

When the curtain fell on the first act, my son asked “Can we go now?” I almost didn’t hear him because I was crawling under the seats toward the exit.

5. Watching any Christmas movie made after 1967 (with the exception of Muppets Christmas Carol and The Snowman)

Look, I’m sure some good children’s Christmas movies have been made since How the Grinch Stole Christmas and A Charlie Brown Christmas, I simply haven’t seen them.

We tried watching Home Alone, which is billed as a Christmas classic on Netlfix, but the plot line made no sense to my thoroughly modern children.

When little Kevin McAllister’s parents freak out because they left him at home, my children seemed confused.

“Why don’t they just call his cell phone?” my son asked.

“Not many people had cell phones back then,” I answered, thinking of the shoebox-sized contraptions we thought were so cutting edge in 1990.

“Email?” my daughter suggested helpfully.

“Same.”

Also, the family is beyond obnoxious. My kids sat in open-mouthed silence during the first few scenes when the siblings call each other idiots and use the phrase “Shut up” approximately 30 times.

Finally, it’s craaaazzzzyyy violent.

“That’s really disturbing,” my son said when Joe Pesci’s head ends up in the path of a blow torch.

“Tell me about it,” I replied. “Such a talented artist and he had to take roles in schlock like this just to pay the bills.”

My son nodded.

“Yeah and his head’s on fire,” he said.

That too.

6. Elf on the Shelf

Over the years, many people have tried to indoctrinate us into this tradition with the promise “It’s so much fun!” I’m not buying it.

For those unfamiliar with the tradition, the elf is brought out at the start of the Christmas season (October) and is placed on a shelf to keep an eye over the children in order to report any bad behavior to Santa. To make it seem “real,” parents are supposed to put him in a different place each night, so that the children think he has moved.

I have some friends who object to this tradition on the grounds that they don’t want their kids fearing an inanimate narc who presides over their home like a hawk-eyed Stasi officer.

For me, it’s less about that and more about the work involved. It’s bad enough that at this time of year I have to mail the Christmas cards, shop for and wrap gifts, bake, decorate, have breakfast with Santa, attend abstract ballet productions, watch an overrated child actor bash two grown men with paint cans and reassure my children they won’t be getting switches in their stockings, now I have to remember to move a creepy-looking doll every night?

In the words of Kevin McAllister, “I don’t think so.”

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Look, kids! It’s Mother Miriam and Agnes of God.

Keller vs. Sullivan, Part II: Is there an Annie Sullivan in the house?

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The appointment starts with great promise.

The neurologist, young and eccentric, says he knows exactly how to help my daughter. Follow his recommendations, he says, and she’ll be talking, using the toilet and behaving like a typical five-year-old in no time.

I am giddy with relief.

It’s a feeling all special needs parents know well. In a world where no one “gets” our kids — and some just get them flat-out wrong — when you encounter someone who not only gets them but knows how to help them, it’s like Christmas, your birthday and the season premiere of The Walking Dead all in one.

I call it the Annie Sullivan Effect, for the woman who taught a blind and deaf Helen Keller how to communicate. Like Sullivan, these women and men come into your child’s life and flip a switch you didn’t even know where to look for.

We have been lucky enough to know several Annie Sullivans. They hold a special place in our hearts and prime real estate in our prayers.

But as much as I adore these people, there is a massive drawback to meeting a real life Annie Sullivan. It makes the disappointment that much greater when someone who appears to have Sullivan potential turns out to be a JAGBA, (Just Another Giver of Bad Advice).

If there is one thing special needs parents have in abundance it’s JAGBAs. They leap out at us whenever we venture forth in public with our children or post about them on social media.

“Do you speak with him?” one woman asked when I explained that my then-3-year-old son couldn’t talk. “I mean, maybe if you modeled speech it would help.”

I was beyond tempted to reply, “No, we communicate entirely in mime. Look! He’s doing the ‘I’m-trapped-in-a-giant-invisible-box’ routine! Haha. Good one, buddy!”

While JAGBAs exist for all moms and dads, they can be particularly vexing for special needs parents because, unless the person speaking has a degree in neurologically atypical development, he or she has about as much chance of giving appropriate advice as I do of being crowned Miss Argentina. (It could happen but the circumstances would be very suspicious.)

Even once you do explain your child’s condition, some JAGBAs refuse to accept that this negates their words of wisdom. That some kids are wired differently challenges, well, apparently everything they believe about the universe.

Having seen up close and personal how differently some children develop, I can very comfortably say it is more bizarre to believe the “one-size-fits-all” line of thinking than it is to reject it.

Take my son and speech. Everything that helped typical kids learn how to speak, such as modeling speech, didn’t work for him. And trust me, we modeled out the wazoo. At his pediatrician’s request I narrated everything we did, much to the concern of people who found themselves near us in public. “Here we go up the stairs,” I’d say, as people inched away from the crazy lady. “Up, up, up the stairs.”

Even things that helped the majority of atypical kids learn how to speak, such as speech therapy and sign language, didn’t work. (And no, despite what some JAGBAs argue, learning sign language does not discourage kids from speaking. It’s not like they have the keys to the kingdom being able to sign “milk” and “potty.”)

So what did the trick? A new neurologist and an occupational therapist who determined the problem was with my son’s vestibular system. (Essentially, his sense of balance.) Instead of trying to get him speak, this therapist focused on movement. She pushed him on platform swings and swung him in circles. Within a week, he said his first words. Probably to get her to stop.

When you witness something like this, you don’t just drink the neurologically atypical Kool-Aid, you chug it.

That’s why I am ready to follow every recommendation this young neurologist gives. He has already built a reputation within the local special needs community for “thinking outside the box” and getting results.

His first suggestion is to take a stool sample so he can prescribe a course of probiotics and supplements for my daughter. Sounds good.

He then sends us across the hall so his nutritionist can devise a special diet for her. I am THRILLED. Eating has been a major issue for my daughter ever since she started chemotherapy and the constant nausea and vomiting turned her off food.

Toward the end of her cancer treatment she was fed entirely through a tube. When she began her recovery, her doctors recommended a liquid meal replacement drink to help her gain weight and grow as we gradually reintroduced solid foods. It has helped us tremendously but we would love nothing more than for her to enjoy eating again.

Unfortunately, the nutritionist is no Annie Sullivan.

The trouble starts when this woman — let’s call her Twiggy — enters the room, turns sideways and disappears. Okay, I’m exaggerating but she was worryingly skinny. I know it’s not nice to be prejudiced against anyone for their weight but I have a really hard time trusting anyone who doesn’t seem to enjoy food. Especially a nutritionist. I mean, what was she going to teach my daughter to eat? Altoids and laxatives?

She asks for a list of foods that my daughter consumes on a regular basis. It’s a short list and when I mention the name of the supplement beverage, her head snaps up and her eyes grow wide over protruding cheek bones.

“That stuff is poison,” she says. “It’s full of sugar and sugar feeds cancer.”

“Her oncologist recommended it,” I reply. “Her tumors have been steadily shrinking the entire time she has consumed it.”

She looks surprised.

“Ok, well, let’s get her off that,” she says and then lists on her bony fingers several nutrient-dense foods I would be thrilled for my daughter to eat but I’d be lucky to get my husband to try.

“Great!” I chirp. “How do I get her to eat all this?”

She looks at me blankly.

“We have a lot of trouble getting her to try new foods,” I explain. “Do you have any suggestions?”

“Just put it in front of her,” she replies, pulling out her phone because apparently we’re boring. “She’ll eat if she’s hungry enough.”

That’s when I knew it was all over. Because yes, most children will eat foods they don’t particularly like if the alternative is going hungry. But kids with sensory issues or oral aversions won’t, especially if they are too young or developmentally delayed to make the connection between hunger and food.

Her advice was the equivalent of Annie Sullivan telling the Kellers, “Just force Helen to develop a concept of language and a method of communicating.” Great in theory, but how do you get there?

In that instant it became apparent that, although this woman was well-versed in nutrition (she could correctly pronounce “quinoa”), she was pure JAGBA when it came to eating and the neurologically atypical.

I wasn’t alone in this assessment. A few months later, the neurologist added a feeding therapist to his staff so children could learn to eat these incredible diets being created for them.

And once again I was reminded that they can’t all be Sullivans.

In the grand scheme of things, it’s not that big a deal. Two years on and my daughter has almost caught up developmentally, even without the help of kale. Some people have asked why I even bothered with all the therapists and doctors if she would eventually get there on her own. The truth is, we had no idea if she would.

Also, as a parent you see your kid struggling with the basics and you want to help. You want your child to enjoy everything other children her age do: giggling with friends; the sweet, sunshiny taste of an orange; the pride of not crapping her pants.

Although there is far less call for Annie Sullivans around our house these days, I will probably always be on the look out for them. This is largely because I feel so out of my depth as a parent to the two unique, fabulous people that are my children.

So to any and all the Annies out there, thank you for what you do.

And call me if you have any suggestions.

This entry is dedicated to the miracle-working Ms. Lee. Thanks for being our first Annie Sullivan.

 

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In this corner, we have Annie Sullivan.

Keller vs. Sullivan, A Two-Part Series

Me, the momLeave a comment

Part 1: I’m sorry, Mrs. Keller

I’ve always thought Annie Sullivan was the bomb.

For those unfamiliar with the name, Sullivan was a 19th century educator who taught a blind and deaf child how to communicate with the outside world, paving the way for the latter’s life as a speaker, writer, activist and all-around badass.

The child was, of course, Helen Keller.

While both Sullivan and Keller have been lauded for their achievements, there’s someone else who deserves credit for Helen’s greatness.

That person is, of course, her mother.

Don’t worry, this isn’t some saccharine tribute to a complete stranger simply for giving birth. Rather, it’s an overdue and sincere apology to a person who deserves more credit than she’s been given. At least by me.

Some background

I have been borderline obsessed with Helen Keller since childhood. What can I say? She’s one hell of an icon.

And while long ago I placed Helen and her teacher on pedestals, I dismissed her mother as sweet but useless. This was mainly because I was a judgmental a-hole before I had children, with an unmatched ability to dismiss people I’d never met and experiences I’d never had.

In my defense, most of the books written about Helen Keller mention her mother only incidentally, focusing instead on her relationship with Sullivan.

The most in-depth portrayal of Kate Keller comes from the 1959 play The Miracle Worker, which chronicled — what else? — the early days of Helen’s relationship with Sullivan.

In the ultimate good-cop/bad-cop set up, the play portrays Kate Keller as kind but weak willed and dangerously indulgent of her child. This is in stark contrast to Annie Sullivan, a fiery yankee with a no-nonsense attitude who swoops in to instill order in the Keller household.

There’s no reason to believe these characterizations are far off the mark. Kate was the mistress of a genteel Southern household. Sullivan was the child of Irish immigrants and spent a large part of her life in a asylum for the poor.

What the play makes clear early on is that to thrive, Helen needs less of her mother’s kindness and more of Sullivan’s tough love.

A child lost

Although a work of fiction, The Miracle Worker is considered, for the most part, an accurate depiction of what occurred when Sullivan moved in with the Kellers to teach their daughter.

When it opens, 6-year-old Helen is depicted as near feral. Without the ability to understand what’s going on around her, she has been left in a protracted state of infancy. She is filthy and disheveled. One can presume — if one is me, anyway — that she is in diapers.

In the first few minutes, she attacks another child with a pair of scissors. A few minutes later, she tips her baby sister out of her cradle.

There is yelling and crying, and like the setup in a bad reality show, the Kellers are depicted as a Family in Crisis.

The audience learns that Helen’s parents have been advised to put their daughter in an asylum for the mentally ill. So far they have resisted but unless they can get Helen under control, they may have no choice.

Sullivan quickly identifies, of all things, Kate as the greatest obstacle to Helen’s success. Kate refuses to discipline or train her child. She dispenses hugs and cuddles instead of punishments and allows her daughter to run wild, stepping in only if the child has hurt someone or could hurt herself.

When Sullivan attempts to instill some discipline in the child, Kate frets that she is being too harsh.

Sullivan decides the only chance she has of getting through to Helen will be if her mother is out of the picture.

She’s right. It’s only after Sullivan moves into a small house with Helen and works with her one-on-one that she is able to teach the child the concept of language, thus changing her life forever.

What a kick to the maternal nuts.

What Kate did for Helen

While there is no denying that Sullivan changed Helen’s life for the better, I believe Kate’s contribution was as great, if not infinitely more subtle.

Helen Keller is inspirational not only for finding her voice despite physical setbacks but because that voice was so remarkable.

Her writing and speeches — which are still quoted today — show a soul filled with wisdom, joy and compassion. This is astounding when you consider she spent the first six years of her life in what was practically solitary confinement.

Until she learned how to communicate, Helen largely knew only silence and isolation. She had no way to express her feelings or even understand them.

She was also aware of the fact that she was different. In her early years she would feel people’s faces while they were talking and move her own mouth in imitation. She knew she was missing a piece of the puzzle. She also had to sense that few people wanted to be near her. Even her father and older brother gave her a wide berth.

But because of Kate, she also knew affection and comfort. Her mother’s kindness and total acceptance taught Helen that, as different as she was, she was still worthy of love. It’s difficult to imagine who she would have become without that knowledge.

Kate also showed a heroic amount of empathy and patience. While most people dismissed Helen as wild or even insane, Kate looked beyond her behavior and tried to understand what was going on in her child’s head. She knew Helen didn’t act out because she was a mean child. She was frustrated. She was lonely. She wanted desperately to fit in but she didn’t know how.

Kate Keller did more than just defend and mediate for her daughter. She kept her tethered to humanity.

That’s some hardcore parenting right there.

Could she have done this and still instilled some discipline in the child? I guess. Hell, she could have been a real super hero and devised a system of communication for the child as well but she didn’t.

All I can say is, from one mother to another: Kate Keller, I get it now. I’m sorry I didn’t get it sooner.

You rock.

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One great mama.

Observations from the field

Me, the momLeave a comment

“I volunteer! I volunteer as tribute!”
Katniss Everdeen, The Hunger Games

I thought Katniss Everdeen was stupid. All she did was volunteer to take her sister’s place in a fight to the death.

This idiot here offered — once again — to chaperone a school field trip.

I don’t have a great track record with field trips. (See here.) But I had high hopes for this one. My daughter is no longer in a special needs classroom. Her classmates are, for the most part, neurologically typical kids without sensory issues.

A trip to the nature museum sounded easy.

Here are some of the conclusions I reached after that day:

  1. Teachers should be allowed to call off field trips without any warning if they feel like it.

The morning of my daughter’s class field trip, the temperature reached 94 degrees (34 degrees celsius) with 75 percent humidity. (It’s fall, y’all!) This wouldn’t have mattered except we had a 40-minute walk there and back.

“I didn’t realize it would be this hot,” the teacher said. “Oh well.”

Tack on the hour we spent playing outside at the museum and many of the children were exhibiting signs of heat stroke by the time we made it back to school.

2. Teachers should be allowed to do whatever they want, whenever they want.

Just, because.

3. Kids really do say the darnedest things.

This is one of those truisms that exist for a reason, such as, “Your children’s favorite restaurant will always be in the most crime-ridden part of town.”

(Seriously. I’ll never forget taking my niece from Scotland out to the Steak n’ Shake and watching her eyes light up when a sheriff’s cruiser pulled up out front.

“Sheriffs are real?” she asked with delight.

“They are,” I replied. “Maybe we could go out and say hi…”

There was a loud thump as two deputies slammed a skinny, bearded teenager across the hood of the car and cuffed him.

“Or not,” I said. “They’re, um, busy.”)

But back to kids saying funny stuff.

On the walk to the museum, a 7-year-old girl in glasses and braids sidled up to me and asked, “Did you do anything fun last night?”

“We played Uno,” I said.

“That sounds fun,” she said. “Me? I was in a car wreck.”

“What’s your name again?” I asked.

At lunch time, when I was speaking with some of the children about the Harry Potter books, I accidentally let it slip that Ron Weasley dates Lavender Brown.

“Spoiler alert!” one of the girls shouted.

Another shook her head and said, “That’ll never last.”

But the most amusing words by far were spoken by a chubby-cheeked, 6-year-old girl named Clara. When she fell off the swing, she soberly informed me she had hurt her booty. When some of the older girls told me in a panic that she was injured, pointing at a bright red patch on her arm, she gravely informed me, through a thick lisp, “It’s just a little psoriasis.” (Ith jutht a little thoriathith.)

4. Academic situations still freak me out.

Part of our trip included a lesson in the planetarium on the sun, the phases of the moon, and constellations.

It was all fun and games until our super chipper, heavily pierced tour guide (“Call me Britney!!!”) began asking questions.

“Does anyone know how long it takes the Earth to rotate on its axis?”

“How long does it take the Earth to orbit the sun once?”

“Can anyone point out the Big Dipper?”

Suddenly I felt the familiar panic these question-and-answer sessions always induced as a child. It didn’t matter that I knew the answers, or that I had zero chance of being called on. My palms still broke out in a sweat and butterflies flitted through my stomach.

I knew I had become too emotionally invested in the moment when a boy who had been blurting out correct answers claimed it took 35 years for the moon to orbit the Earth and I had to stop myself from exclaiming “Loser!”

5. There really is something in the water.

Kids these days grow up fast, and I don’t just mean metaphorically.

My daughter is in a mixed first-, second- and third-grade classroom, meaning her classmates range in age from six to nine. While I expected the third graders to be larger than the first graders, I was unprepared for just how mature modern eight- and nine-year-olds look.

When one boy asked me a question about the museum’s iguana, I could barely focus on his words, so mesmerized was I by his wispy, Menudo-esque ‘stache.

One of the third grade girls stood at my height. I am 5’ 4”. She is nine.

On a trip to the restroom, one second grade girl confided in me that she was menstruating.

I’m starting to think all my friends who eschew products from animals treated with growth hormones are on to something.

6. Teachers don’t make enough money.

I know, I know, everyone thinks this — or pretends to — and for a variety of reasons.

While I could say there is no paycheck large enough to cover marching kids through a heatwave or not strangling the ones who play that STUPID FRICKING bottle-flipping game, the one that comes to mind has to do with teacher training.

Before we departed for the museum, I was scanning the books on the classroom shelves, creased tomes with titles such Basics of Mathematics and What in the World is a Homophone? (Don’t worry, I read that one wrong as well.)

It dawned on me, not for the first time, that teachers have to know a lot of stuff and not just the actual subjects they teach.

There are thousands of people who spend their lives studying how children’s minds work. There are countless methods and techniques for teaching each subject. Teachers are expected to learn all of this, remember it, and apply it correctly without losing their minds.

I remember the textbooks used by my friends who studied education in college. They were as thick and dry as bricks, full of incomprehensible phrases they actually understood. I could barely remember to staple my papers before I handed them in and they were using words such as “metacognitive” in a conversation.

And let’s not kid ourselves that all the subjects they teach are simple. Basic addition is one thing but could you confidently give a lesson on the correct usage of the accusative form following a prepositional phrase?

In summation: kids are funny as hell; teachers are smart as hell; North Carolina in October is hell.

I’ll have more following the next field trip.

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My expression when it was all over.

 

 

 

A very angry thank you

Me, the mom7 Comments

To the doctors, nurses, techs and child life specialists who choose to work with pediatric cancer patients, I have one quick question: What the %*&@ is wrong with you???

You know there are easier ways to make a living. In fact, I would be hard pressed to find a more demanding way to earn a paycheck.

Sure, there are other professions with long hours and stressful conditions. Not one includes telling parents their children might die.

Perhaps no one mentioned this in medical or nursing school, but there are fields where the chances of watching an infant vomit and defecate blood are next to none. Podiatry comes to mind. Urology, perhaps.

Or, hey, you know what? F—k medicine altogether. As far as I know, investment bankers don’t have to repeatedly stick a needle into a shrieking toddler to start an IV in impossibly small veins.

Yes, other people deal with anger on the job. (Does anyone like a telemarketer?) But in no other profession is the vitriol as relentless and undeserved as it is for you.

Sometimes it comes in the heat of the moment: a parent snaps after weeks, months, even years of watching their child suffer, and turns on those trying to help.

Other times, it comes from the realm of the Perpetually Righteously Indignant, those terminally wise fools who enjoy spouting off to anyone who will listen about how oncologists love nothing more than a new diagnosis or a relapse because it means more money in their bank accounts.

There is a special place for people like this. I’ve heard it’s very warm.

And then there are those who believe doctors are part of a conspiracy to keep the cure for cancer under wraps because, as the logic goes, if you cured cancer, the medical industry would lose out on a valuable source of revenue.

Look, I love me a good conspiracy theory. Is it possible that pharmaceutical company execs are conspiring with each other to keep a failsafe cure for cancer from coming to the market? I dunno. I have some serious reservations about this theory but then I didn’t spend all those years watching The X Files and not learn a little something about the possibility of the implausible.

But if this is the case, do I believe the doctors and nurses working with pediatric cancer patients are “in” on it?

Oh hell no.

Because it would take one hell of a monster to subject children to the misery and uncertainty of chemotherapy and radiation if there was a magic pill that could quickly and painlessly make all the bad stuff go away.

What I would suggest for those who think caregivers are in on the Great Cancer Caper is to spend 24 hours on the job with a pediatric oncology doctor or nurse.

Change the sheets of a toddler who has just thrown up for the tenth time in an hour. Listen to the screams of a 5-month-old whose chronic chemo-induced diarrhea has left his bottom covered in sores. Comfort the parents whose child just died in their arms.

Then come back and tell me if you think there is any amount of financial compensation that could make this worth it.

But back to you, oncology types.

What gets me about you people, is that you choose to live the way most people can’t.

Most people get to exist quite happily outside of the pediatric cancer bubble. Before my daughter was diagnosed, I was one of them. Like everyone else, I thought of kids with cancer only when an ad for St. Jude’s came on the TV, or when watching old episodes of Highway to Heaven. (I don’t get out much.)

These often saccharine depictions, which are still too overwhelming for some, don’t even begin to capture the horror of pediatric cancer.

You live the reality.

You spend your work hours in the trenches with these children, witnessing more pain and suffering than any human should have to. You spend your down time walking or hiking or mud-running to raise money for cancer charities. You celebrate the victories. You cry at the funerals. You honor the birthdays of those who will never grow up.

It takes one hell of a person to do that. I mean, the words “bat” and “s—t” come to mind but that doesn’t really capture the high regard in which I hold you maniacs.

All I can say is, on behalf of all the families that have been or will be affected by pediatric cancer, thank you. Thank you for choosing to do what you do, to put up with what you put up with.

Because your lunacy makes it possible for cancer families to keep going.

Y’frigging nut jobs.

Sign here to end the abuse

Me, the mom2 Comments

It shouldn’t happen to a child but it does.

Every summer, across the country, thousands of privileged, middle class kids are forced to attend institutions known as “summer camps.”

The travesties they endure in these cleverly disguised tear factories cannot fully be depicted in writing. Suffice it to say, “campers” are coerced into such “fun” activities as swimming, making crafts, playing games and singing songs, all when they would much prefer to be at home rolling around on exercise balls.

Forget what you think you know about pediatric suffering. Forced labor, starvation, domestic violence — nothing can quite compare with the indignity of lanyard making and games of “Hot Potato.”

The choice is obvious: children should be allowed to play video games for eight hours straight or trail two inches behind their beleaguered parents mumbling, “Bored, bored, bored,” every single day of summer vacation if they prefer, instead of being subjected to the hyper happy ministrations of attentive teenage counselors with names like “Tinkerbell” and “Meatball.”

Until recently, experts were divided as to who was most at fault for the existence of these licensed pits of despair.

Some blamed the school system for ceasing to hold classes for 12 weeks every year. On further scrutiny, it became clear that teachers forced to direct and focus the energy of the nation’s children year round would, in professional parlance, “lose their s—t.”

Others faulted parents, who selfishly refused to drop everything — or cease employment — for three months to direct and monitor the activities of their children every waking minute of the day.

Still others, mainly those who raised their children decades ago or don’t have children of their own, have repeatedly claimed this concern over filling children’s time is ridiculous. This group of experts, many of whom never removed the cigarettes from their mouths while putting their children to sleep in lead-based-paint-coated cribs, have said children should entertain themselves, playing outside with friends, roaming the woods, riding their bikes.

Of course, in this day and age this option is only available to parents who live on quiet cul-de-sacs with trusted neighbors not listed in the sexual offender registry who are within walking distance of woods not being used as shoot-up galleries by junkies. And then only if the children wear helmets, are slathered in factor 70 and checked thoroughly for ticks in the evening.

Even those who do enjoy such a prime real estate location would more than likely find any efforts to encourage this enjoyable independence in their children stymied by bystanders — mainly those who raised their children decades ago or don’t have children of their own — who would report them to authorities for neglect. (Click here to read about the arrest of a mother who let her 9-year-old walk to the local park unattended, or here for the woman investigated because she let her three children play in their own backyard while she folded laundry inside.)

Still, children shouldn’t be forced to suffer just because modern-day parents pretty much suck balls no matter what decisions they make.

Sign here to stop the madness. And consider our other petition against the indignities endured by teenagers whose parents drop them off right in front of the movie theater instead of around the corner, BECAUSE THAT IS SERIOUSLY F—KING EMBARRASSING.

 

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Seriously, this s–t needs to stop.