This past weekend was the Perfect Storm of Uncool events: my birthday (not one of note, though my increasingly creaky back says otherwise), Mother’s Day and Li’l Diva’s annual dance recital. I write about the latter in this piece, which first appeared a year ago in Stamford Magazine.
It’s the heart of spring, a special time with weather warming, flora blooming and vacations approaching that ignited me so as a child but as an adult reduces me to ash.
Field trips to Cove Island, to Dorothy Heroy Park and – gasp – to “The City.” School concerts. School plays. Daily rehearsals for said concerts and plays. Little League practices. Little League games. Going back to the Little League field to retrieve a jacket left in the dugout. Funny how perspective changes when you go from kid to your kids’ chauffeur.
A week ago, though, after I picked her up from high school tennis practice, she sat in the minivan and sobbed.
She had made the varsity tennis team, not just as a freshman but as a 15-year-old who really had only held a racket in earnest for about six months.
Li’l Diva’s coach just told her she needed to be in uniform and ready to play in the next day’s match. And in the one on Monday. This Monday. As is today.
The Li’l Diva in her orange and black best, ready to hit the courts.
My conversation with the school nurse at the start of every academic year ends with me say this: If anybody comes down with chickenpox, call me immediately -- it could save my daughter's life.
Chickenpox – deadly?
Most adults remember chickenpox as an irritating childhood rite of passage. No one ever died from excessive itching, right? I didn't, though I still bear a small, circular scar on my right cheek from my fingers getting the best of me during my bout. U.S. Centers for Disease Control and Prevention statistics, however, show that before development of a vaccine in the mid-1990s, chickenpox killed more than 100 children annually and hospitalized over 10,000 for complications, including pneumonia, meningitis and encephalitis. The more severe consequences tended to happen to those with underlying health issues, such as a comprised autoimmune system.
Parents tread a thin line between success and failure at raising their children, and rare is the time when your own kid inks that line as clearly as our daughter Li’l Diva did.
This tale, like so many we were supposed to learn in school but cheated only ourselves by simply poring over the Cliff Notes, begins in medias res with a shocking discovery. Enter my wife -- concerned look, furrowed brow, a question tinged with accused failure on her lips.
"Have you ever had the drug talk with your daughter?" Note the girl is mine. Possession is nine-tenths the other parent's in troubled times.
ME: Practice those (windmilling ala Pete Townshend) power chords again?
LI’L DIVA: (rolling eyes) No.
ME: Ahem. Learn anything new?
LI’L DIVA: Yeah, some song by … The .. Clack?
ME: The Clash?!
LI’L DIVA: Yeah.
ME: (eyes popping) Which one? Which one? “Should I Stay or Should I Go”? I actually sang that in our band in high school. We never played any where outside of my friend Tim’s basement before --
LI’L DIVA: No.
ME: “Rock the Casbah”? We also --
LI’L DIVA: No.
ME: "(White Man) In Hammersmith Palais"?
LI’L DIVA: What?
ME: Which song?
LI’L DIVA: “Train” something …
ME: “Train in Vain”?
LI’L DIVA: Yeah.
ME: I have The Clash on Broadway box set you can borrow and -
My Love is perplexed which is annoying because that’s my household specialty.
“How does Cure JM only have 2,800 votes in the Chase Community Giving contest? It only takes a minute and a few clicks on Facebook. I’m not expecting us to win $250,000 again but we should be able to get to number 11 for the $100,000,” she said to me last night after an hour of conference call brainstorming with other parents of kids with juvenile myositis.
She looked at me.
“Hey, I’m trying,” I said. “I’ve Facebooked. I’ve tweeted. I’ve emailed people. Now I’m hitting people up via instant message. I never IM people. My online friends are thinking I’ve been replaced by a pod person who will next be trying to convince them to try some tasty soylent green.”
:: crickets ::
“Soylent green,” I said. “It’s people.”
:: crickets leaping to their deaths::
Then I threw my daughter under the bus.
“Hey, what about the girl? What’s Li’l Diva doing? This is all to benefit kids like her. She has a Facebook account. I hear the youngun’s love the Facebook and the mouse clicking and the liking and the poking!”
Li’l Diva was summoned away from another cringe worthy episode of Dance Moms to face the parental music.
She spoke like the middle-schooler she is.
She said, “I don’t want other kids to know I have a disease.”
Correction. She spoke like the average, normal middle-schooler she is underneath the makeup she started wearing this year to hide the telltale mark of juvenile myositis – the bright butterfly rash across her face.
My Love and I looked at one another.
“You don’t have to say you have the disease,” My Love said. “Say you are just trying to help kids who do have it.”
All I could do was nod.
+ + +
Cure JM Foundation, the tiny nonprofit that searches for a cure for our daughter's autoimmune disease, is SERIOUSLY in the running for $100,000 from Chase Community Giving and still has a chance for the big $250,000 grant.
This is a quick one-time vote (OK - two times if you vote then share the link and someone clicks it; three times if you are a Chase bank/credit card holder) that takes only a couple of mouse clicks. Please vote for us and our charity partner, Rett Syndrome Research, before Sept. 19 and spread the word.
The bad news is we are visiting a local children’s hospital today so she can get a 4-hour IV of a new med, Rituximab, that may or may not help and carries with it the usual suspects of “rare” side effects.
It’s the see-saw battle we fight regularly; the tightrope we walk between employing a treatment that may finally reset her immune system to its proper working order and risking the potential dangers, short- and long-term, caused by introducing all these toxins into her system.
We have done this for nearly a decade now and we will continue to until the right combination of science and luck cures her. Giving up is not an option.
There’s nothing you kind people do during today’s infusion other than keep her in your thoughts and, if you are inclined that way, your prayers.
If you would like to do something beyond today, here’s my request:
Some claim that I, a straight American male, am biologically
hard-wired to notice the female breast. I won't argue with science.
Unless the breast in question belongs to my tweenage daughter.
Just the other day there she was: a sweet little thing in a
princess gown, buckled snugly at 5-points in her car seat, singing about the
yumminess of fruit salad. Then I blinked, and ... OMIGOD! WHERE
DID THOSE COME FROM??!!
After I recovered from hysterical blindness, my little angel
announced that I needed to take her shopping.
For a bra.
"I need it for my dance recital Sunday," she said.
"My costume has really thin straps so the teacher said I should get a
strapless bra."
I know bra shopping is one thing she has done before (and would
rather do) with the adult women in her life. So why me, Lord? Why now?
Process of elimination. My wife was on a business trip; my
sister, on vacation. Ladies and gentlemen, I am literally … the booby
prize.
"Uhhh," I said wittily, "To Target."
+ + +
I'm surprised by just how big the lingerie department here is.
By big, I mean, their key demographic must be body doubles for Sofia Vergara.
It's also dazzlingly colorful like one of those candy stores where the walls
are lined with tube after tube of exotically flavored jelly beans.
After wandering around, we find the juniors section.
I have not been this overwhelmed by selection since I shopped
Home Depot for sheet metal screws.
"Will this work?" I say. "The tag says it's a
convertible bra."
"No. It has straps."
"Doesn't convertible mean the top comes off?"
"I don't know," she says.
And I think to myself, I hope you never will until you're
married.
It's then that I spot her: A woman by the sports bras with a
cart. It's overflowing with a mish-mash of clothing, sporting goods and toys.
More importantly, she wears a bright red jacket and a bull's eye name tag.
"Let me go ask that clerk ..."
"Daddy, nooooooooooooooooooo!"
"All right," I say. "Just remember that answer
when you're on stage and the girls make an unexpected curtain call."
Finally, we find some strapless bras. They are in hot pink. In “passion
purple.” Day Glo green. Vegas showgirls wear less flashy outfits.
Finally we locate a couple that would not be noticeable from a
nautical mile in London fog. They also happen to be in her size.
Not that my daughter knows her bra size. That would have been
too easy. I've been down this road before. Not with bras, but nearly every other
piece of clothing my children own because in own house – this dad does the shopping
from groceries to garage doors. So before we left the house, I went to my
daughter’s room, found one of her bras and checked the tag. Now, the next time
some marketing genius tells you women make the vast majority of family
purchasing decisions in the United States, you have the permission of this
member of the minority to kick that person squarely in the statisticals.
She heads to the fitting rooms, and I am alone. Suddenly, I
forget what to do with my arms. Fold them? No. Hands in pockets? No -- NO!
This keeps me perplexed while I wait. And I wait. And I wait ...
Suddenly, I am a child again. Waist high to a headless mannequin
in a tube top and bell bottoms in some long-demolished women's department
store. I'm confused. Lost. My mom has dragged me shopping with her again. The
hopelessness. The suffering. The boredom. … The boredom. Things start pulling
away and I'm falling down a hole walled with endless racks of frilly rack
holders. I'm weightless, I'm floating! Below, I can almost see my boyish self
...
Wait a sec.
I really can see my boyish self.
It's my 9-year-old son. I forgot we took him along on this
expedition.
"Son," I say, extending my right arm and index finger.
"Pet supplies, office supplies, greeting cards. Choose your
pleasure."
After a contemplative look, he picks greeting cards. I tell him
we'll be there in a few minutes.
+ + +
The next morning, the sun still rose in the east.
And this Sunday, when my daughter bounds across the stage for
her final curtsy, I will be there applauding and standing proud and tall.
She hastens down the aisle to Vivaldi. Joins in the chorus of voices singing In My Life and Lean on Me, her eyes and head swiveling with impatience.
Her name is called. She stands and I resist yelling her name to show her how proud I am in front of the hundreds of others there because it will only embarrass her at the moment and me in the reassessment.
She’s not the star pupil, not by grace of her report card or test scores or attitude or ambition, but she’s as bright and luminescent as they come to me even when she greets my “Morning, Sunshine!” with a grunt or answers an inquiry about how something went with her default adjective: “good.”
She is the third to last student to leave the elementary school stage, the ironic end for one always in a hurry to finish every assignment every given to her.She refuses to pause and pose whenever I get near. In nearly every photo, she’s a blur.
As of this morning, our family needs less than $650 to meet our fundraising goal of $20,000 to help The Cure JM Foundation in its mission to find better treatments and a cure for juvenile myositis, the potentially devastating autoimmune disease Thing 1 continues to battle. Please be consider giving a small charitable, tax-free donation to help our daughter’s cause.
Visit our FirstGiving fundraising page to donate online by credit card or to find instructions on how to donate by mail-in check.
If that sends a sinking feeling through your chest, know that it has done the same to me a few hundred times the past two weeks. That's when our daughter, Thing 1, began showing all the signs of a full-blown relapse of juvenile dermatomyositis.
"Flare" is the more proper term. That's what the doctors call it when the disease, a barely smoldering ember in her body for several years, bursts back into visible flames.
The butterfly-shaped rash, cheek to cheek across her face.
The blotchy redness on her elbows and knuckles.
I can't tell you what's going on in the blood and muscles and immune system of that gangly 11-year-old body of hers. That's why we're halfway across the United States meeting with her specialist today.
Blood draws. Close-up photos of the microscopic capillaries of her fingernail beds. Strength and flexibility tests to see if the re-emergent disease has sapped her muscles. Maybe a few X-rays for good measure.
Despite her beet face and speckled arms, Thing 1 says she has no pain and only sporadic weakness and tiredness. She did break into tears at soccer practice on Thursday when I made her, along with her teammates, run a third lap for their failure to completely finish running either of the first two.
"I was running, but I got tired, Daddy. You know why!" she sobbed as I pulled her aside before the drills started.
She couldn't tell me that 9 years ago.
My little girl, age 2, puffy and swollen, covered in these crimson splatters. She'd come home from daycare and fall over asleep on the couch, no thought of eating dinner or even a meek plea for a "Blue's Clues" video. Later, she'd struggle to stand then ask me to carry her because her legs couldn't support the weight of her body. She just didn't have the vocabulary to tell me then.
"What have you been telling the kids at school when they ask why your face is all red?" I asked her one night last week.
"I just tell them I'm hot," she said. "Red hot."
Why children have juvenile dermatomyositis, one of the variations of the juvenile myositis (JM) autoimmune diseases, remains a mystery. Defective genes and out-of-whack chromosomes are suspects. Their flawed designs become evident when a child's immune system kicks into a perpetual overdrive, triggered by at sunburn or maybe an environmental pollutant.
We don't know what kick started the disease in Thing 1 nine years ago; we have a good idea of the culprit this time: the alleged urinary tract infection that kept her from this year's Opening Day in early April. Alleged, I say, because her urine culture can back negative despite all the obvious painful, burning and feverish symptoms.
"It must be some kind of virus," our pediatrician told us. I've learned, as a parent not just a JM parent, that first lesson taught in U.S. med schools is "don't say that you don't know -- just blame an undetectable virus!"
I don't want to sound bitter or anger. I am not. Flares tend to be a normal occurrence in JM kids.
I am disappointed.
I am tired.
I am worried we are back to Square One.
I haven't been letting my wife, My Love, know just how worried. She has enough of a burden to bear supporting our family, putting up with me and fighting feeling of guilt over her daughter's sickness. I may be the cynic when it comes to the world, but I'm the court jester in our little Uncool family who tries to keep everyone on the upbeat even when my sarcastic tongue may say otherwise. I am the optimist when it comes to my daughter's health.
Today, eff it all.
Nearly nine years of pills and shots and IVs and there we were, down to a small handful of meds. No muscle issues for, jeez, six or seven years. Skin nearly pristine for the past three outside of those persistent purplish spots on her eyelids.
Every few months when we'd come out here to Chicago, I'd be sure it would be a day the doctor told us we could take Thing 1 off another dose of one of her immunosuppressants.
Today, I'm thinking they'll hook her up to a bag of Solu-Medrol steroids any minute. They might even want us to cancel our flight and stay here an extra day or two for a few more rounds of that temporary JM extinguisher. At best, I'm expecting to head back to the airport with a fistful of orders for a mess of meds I thought we had seen the last of some time ago.
Today, I know enough about JM and kids who have had it and beat it (or at least lived long and fairly normal lives with it) to be anything but confident that this is probably one of many bumps on this long, ugly journey with my daughter.
That is not the gift I wanted today, which in true cosmic payback, is my birthday.
However, it is a gift I know I must accept.
+ + +
Maybe the timing of Thing 1's flare is fate. Maybe it will help us continue our family's work to make people more aware of this stupid disease so we can find better treatments and, eventually, a way to eradicate juvenile myositis and juvenile dermatomyositis for good.
Cure JM, the all-volunteer nonprofit and only national organization solely dedicated to this cause, will have a team of runners, including My Love, raising money and awareness at the Seattle Rock 'n' Roll Marathon on June 25. (I'm still just a water boy -- we all must know our roles in life). That weekend Cure JM will also host its annual national gathering of JM kids and their families as well as an educational forum that will teach dozens of doctors from around the world about juvenile myositis, how to spot it, how to treat it and how to help us find a cure for it.
You, my blogosphere friends, helped Cure JM win $250,000 in the Pepsi Refresh project with your votes, Tweets, Facebook posts and other gestures. My family and all JM families are grateful and highly indebted to you for that. I hate ask for your money to help our fight, but until I hit the lottery so I can fund the whole organization on my own, I don't have much of a choice.
Please visit our family's FirstGiving page to donate to Cure JM online or by mail. Even if all you can spare is $5, it will be $5 more than Cure JM had before.
If you can't donate (or even if you do), you can still help us spread the word about Cure JM's mission via email, Twitter and Facebook by forward either of these URLs:
Thanks for your patience with this post and my pleas. I'll keep you updated on Thing 1 as well as continue to be the goofball you expect me. That's my job.
My Love made the appointment for last Tuesday. Not being one for history, she didn’t realize the significance of selecting December 7 as the day for her and Thing 1 to finally make good on someone’s promise to chop off her tresses for a good cause.
“Pearl Harbor Day,” I told her. “When the Japanese bombed us into World War II. ‘A date which will live in infamy.’”
“Oh.”
“It’s OK. I’d still love you bald. Or looking like that crazy doll head with the erector-set legs in the first Toy Story movie. I mean, you did put up with my mustache for a month.”
Combined, the two of them donated seven locks, each at least 10 inches long.
And hardly a tear was shed.
And yes, Thing 1 still wanted to know if she could get paid.
She settled for a plate of sliders and wings at a restaurant down the street.
+ + +
For more information on donating to Locks of Love, visit its website and FAQ page.
You just started your first day of fifth grade. I know that in six hours this peace enveloping me at home for the first time in two months will again be pervaded by the forced studio laughter of the Disney Channel or the bubblegum reverberating from your boombox, but it will be different even though they are the same sounds we shared together all summer.
Today is your last first day of elementary school. You’ll have many more first days, academically speaking. There’s middle school and high school, definitely. Maybe a first day of college if I can ever convince you that reading is, while boring from the prospective of a 10-year-old fueled by the swooning pleas of Justin Beiber, still pretty essential to getting somewhere beyond definitively average.
But this was the last first day that I will ever walk you through those doors and into that alternative reality of homeroom.
The last one at which I’d personally hand your teacher a note about why your need sunscreen and a hat when outdoors while trying to quickly explain what sets you apart from all the other kids medically but pretty much not in any other detectable way.
The last one where you’d really be a little girl in more than just my memories. You and I and Mom all know this.
Middle school, sweetie, it changes a kid. Girls, especially. The meanest classmates I ever had were in middle school and most of them were girls. They say girls mature faster; I say they grow up too soon for their own good. We boys, we like to stay boys well past our due date. That, you’ll learn, can be a good thing. Within reason.
I wish I had a photo from your first day of preschool after we moved here. You were so excited to be with kids your own age again after two years of hanging around with nannies and nurses and doctors. You were only supposed to be in preschool for half a day, to get you acclimated to your new surroundings, but when I came to pick you up, you asked if you really had to leave all your new best friends in your whole wide 5-year-old world. So you stayed. Your brother, he cried when he saw me a few minutes later and pleaded to come home for lunch and a comforting heap of Nick Jr.
It’s been so long since I’ve seen you all pudgy faced and stuffed with the wonder you readily ate out of the everydayness of life. Remember that Disney Princess backpack from kindergarten? You transported a zillion paintings and drawings and scribblings home with you in that pink and purple nylon time capsule. You said you wanted to be an art teacher. I said even art teachers need to learn to read. You shrugged and Crayola-ed on.
This moment from the first day of first grade might have be the happiest you had all year. Through some quirk, not one of your 20-odd kindergarten classmates ended up in your new class. A bully refused daily to let you play “Family,” telling you you couldn’t even be the family’s dog. In class, several other kids always required too much of the teachers’ attention. You suffered for it. We laid on your bed one night way too late into the school year and you cried – one of the only half dozen times you ever cried from something other than physical pain. You hated school. Hated those kids. You didn’t fit in and you didn’t know why. I wish I had a better answer for you then. Or now.
Your brother joined you the next year. It was a battle of bad haircuts. His too short, yours all kinky because you wanted to sleep in tight braids so you could look all frilly for your debut in second grade. With a little extra help from teachers this year and some friendly faces in the desks next to yours, this was when things started to click for you.
And that bully? When you saw him on the playground, you put him in his place by chasing him around under the threat of being kissed. I laughed when you told me this then, but sweet thing, this was the first time you struck fear in my heart for the teen years ahead.
But note the crossed arms in the photo. The rebellion had begun.In third grade, you became the teachers’ pet. It made you confident. Maybe a bit too confident.
By the next year, while your brother still needed to physically push Mom and me out of his second-grade classroom to make him feel empowered about the whole going-to-school thing, you wanted us out of sight as soon as possible. You stopped kissing me goodbye when I’d drop you off at the side door in the morning this year. Some days, I couldn’t even get you to kiss our dog goodbye.
I knew it would happen. I knew it would hurt. I understand it, though, and I’m over it. That doesn’t mean I still can’t miss the way it used to be.
And here we are. We had to bargain with you for this last photo. Mom promised not to talk to anyone once inside the school and I promised not to cross the homeroom threshold.
We have officially become the enemy that loves you from a distance so your friends won’t see and that loves you quietly so the world won’t hear.
Loathe us publicly as you must, remember we are still your parents and we are always there for you, our sweet little Pumpkin Head: then, now and forever.
The Things found themselves clothing-challenged when global warming relocated southern New England’s normally wet and chilly first week of April into the steam room of mid-August.
Thing 1 dripped about the house in one of her many pink sweat jackets.
Thing 2 sweltered in a dual-layer football jersey, leaving behind a trail of his own brine.
“I know what the calendar says, my little ones, but please dig into your drawers! (No, Thing 2, not THOSE drawers! Get your hand out of there this instant!) Delve into the deepest recesses of your closets! Shorts, T-shirts, flip flops! Chop chop! Vamos! Stat and hang a bag of Ringer’s lactate!”
“Oh, but father! My Hannah Montana shorts and High School Musical T-shirts are soooo outdated!” declared Thing 1. “My classmates shall make a mockery of me!”
“Yeah, Pops. And my butt and belly are too big for mine,” piped in Thing 2. “Yo, yo, yo – pass the chips!”
A silence followed filled with the ticks that our digital clocks would make if only they understood artistic license.
“To the mall! To the mall!” the Things cried in unison.
I scratched my thinning grays then pinched my thinner wallet.
Lord, oh, Lord – to the mall, forsooth.
The discount admirals of Old Navy were most kind to the boy: three pairs of shorts, one shirt the color of a Hawaiian sunset luau, pre-stained with dribbled poi.
The girl, though, the girl.
“Old Navy, pish posh. No self-respecting Diva-in-Training would stoop so low, father,” said the Thing known as 1.
She wanted justice.
Sorry, that’s Justice. With a capital “J.” And ubiquitous peace signs. And many items in Paradise Green, Real Purple and Fuchsia Rose.
"I don’t like these shorts. They stop above my knee and that means too much sunscreen to slather below,” she said after trying six pairs of varying hue but, alas, the same style.
We browse. We disrupt neat stacks in search of sizes. We re-fold poorly but sincerely.
“I like those but I know you, father,” she said. “You won’t let me wear them because they are too short.”
I’m taken aback with confused anger.
“This is the second time in memory I have heard you express this opinion of me, daughter, and I must ask, when have I ever objected to your clothing because of its length?”
“Then how about these,” she said, holding a tattered washcloth that had apparently been barfed up by an anemic rainbow.
“Too short.”
“Faaaaaaaaaaaaaa-theeeeeeeer!
“What? You were the one complaining five minutes ago that the other shorts didn’t go past your knees!”
Thirteen pairs of discards later, we stood in the checkout line. Thing 1, feeling full of femininity and high on retail ecstasy, browsed a perfume display close at hand.
“Sweet Thing,” I said, ripping the strip from the tester pad, “you need to first spray the perfume on the paper before you smell it. All you are inhaling are dust mites and cotton fiber.”
I grabbed a bottle, squirted, then waved it under her eager nose.
“Mmm mmm mmm! Oh, father! This is the scent I like best of all,” she said. “What’s it called, father dear?”
My fingers rotated the glass bottle until its name snickered to me.
“Sweet Thing,” I said, “it’s called, ‘Bright.’ ”
* * *
Today’s post is brought to you by “Fatherhood Fridays” at Dad Blogs. Visit, click, show them your bare bodkin:
Thing 2’s teacher also didn’t want to take chances. Before she dismissed class yesterday afternoon, she gave them the following action list that if -- and only if -- completed would ensure a thick, hearty snowfall overnight:
Flush an ice cube down the toilet. Not a problem as long as my Tanqueray and tonic doesn’t accompany it on the journey.
Wear your pajamas inside out and backwards to bed. Check. I’m generally good with anything that makes the little heathens actually wear PJs.
Put a spoon under your pillow before going to sleep. Check. Uh, double check to make sure peanut butter is first wiped off the spoon.
Sleep with your feet where your head should be and vice versa. Thankfully, My Love is in town so the kids won’t try to sleep in my bed with me. Thing 1’s feet can make an onion cry.
So if you are buried in the white stuff today, please blame my children. And our nation’s system of public education.
Then, use your non-shoveling time to read another snow-related essay of mine over on DadCentric called “Snow Brick Castles in the Air.”
First one there gets to use the neon green brick maker:
Thing 1 and I have returned from Chicago where we saw her Juvenile Myositis specialist without drama. We’ll reserve that for when the blood tests come back next week and we learn whether she can finally get out of this holding pattern on the tapering of her medications.
However, that did not mean the weekend was not without its moments:
Finally made it to the original Pizzeria Uno – the birth place of Chicago deep dish and, I must say, the pepperoni almost made me switch allegiance from New York thin crust.
Then I took a bite of a leftover slice right out of our hotel room’s mini-fridge the next morning. When it’s not suitable for a cold breakfast, then it’s second rate.
We learned Thing 1 and I will be appearing in a medical publication. At least her eyelids and my photos of those eyelids will. Her doc has a study theorizing that the spots that many JM kids get on them might be a key to understanding the disease’s activity.
Then I got hit up to give some of my own blood and let them take photos of the capillaries in my fingernail beds for a different study involving JM, genetics and possible links the disease has with lupus. My only request was that at some point I get to slam a cane on a table and yell at a doctor, “It’s never lupus!”
The American Girl Place lost a little more of its must-visit status for Thing 1 once she discovered that Water Tower Place also has a Justice clothing store. Either way, I lost financially.
The observation deck of the John Hancock Center offers awesome views and a goofy, guided MP3 audio tour by ex-Friend, David Schwimmer. I guess if you are dweebie enough to take the audio tour, then you deserve Ross Gellar.
David Schwimmer also does promos on one of the hotel’s in-house tourism channels. Talk about whining and dining.
My learning-adverse daughter actually seemed to enjoy the audio tour, though all she could recall from it was that Chicago claims to be the birthplace of the Twinkie and the ice cream sundae.
On that note, Thing 1 becomes very chatty once you load her up with sugar and carbs. In these tween days of grunts and one-word answers, that’s a good thing.
For the first time ever, I did not have to hold the urine specimen cup for my daughter, which is good because at her age that task gets pretty creepy for a dad.
Not a single issue with airport security or elderly passengers on either end of the trip. However, just as boarding started on our return flight from O’Hare, Thing 1 realized she left her jacket on the back of her chair. In the food court. Half a terminal away. I’m still catching my breathe.
Most years you ask me not to buy you anything for your birthday. This year, I listened.
However, I couldn't let this one pass quietly.
Seven years ago today, we got the news that our sweet little girl had juvenile dermatomyositis, a strange disease neither of us had ever heard of then and most people still haven't heard of today. It was an odd birthday gift for you, but a gift nonetheless. Although we quickly learned that it had no cure, we welcomed the fact we finally knew what was making her so ill and that there were ways it could be treated.
Since then, you have worked tirelessly to raise awareness of all the juvenile myositis diseases and raise funds to find a cure for them. I marvel at (and am jealous of) how dedicated you are and how good you are it.
However, this is your birthday. You deserve a day off.
So, for your gift, a bunch of my blogmates volunteered to spread the word for you on this day. Each has posted a piece about our struggle with getting Thing 1 diagnosed in hope of raising awareness of this rare autoimmune disease and the need to find a cure for it.
She bursts into our room and throws herself face first onto the bed between My Love and me. Between the mucus-filled sobs, she wails. Her body bares no visible wounds, no blood, no bruises.
A minute or so earlier, I had kissed Thing 1 good night, leaving her in the glow of the nightlight resembling a sugar-encrusted pink daisy that has enveloped her dreams since age 4. It had seemed to be a routine end to a routine midsummer's day.
She wants something but her words are muffled in the comforter and mattress. My Love and I look at each other, lost, and shrug.
Thing 1's only other spontaneous meltdown came roughly two years ago to the date. We had just finished a bedtime story when, without warning, she burst. She didn't want to go back to school in a few weeks. She didn't want to be different and hated and weird.
First grade had been exceptionally rough for a girl who had loved kindergarten so dearly. Only one classmate from the previous year was among the other 22 in her homeroom. A bully refused to assign her a role in the game of "family" they all played among the multi-colored slides and damp wood chips every day at recess. Someone had started rumors about why she wore sunscreen and floppy hats even during the New England winter.
"I want to be normal," she cried that night three years ago. It was the first and still the only time I had ever heard those say those words.
We start rubbing her back and asking her what's wrong tonight. She sits up a bit, her face red and swollen.
"I want Barney!" she wails.
My wife and I lock eyes. "Who?"
"I want Barney!" she cries again.
"Barney? The purple dinosaur?"
My 9-year-old girl, the aspiring musical diva and fashion maven, weeks away from fourth grade, flops down again but in cinematic slow motion.
"Yeeeeeeeeeeeeeeees," she says and disappears into the comforter.
Barney.
He was 10 inches of evil purple and green plush. What made him particularly satanic was a little button, hidden under the overstuffed polyester belly, that when pushed pierced the ears with warped musical plunks and saccharine:
"I love you. You love me. We're a happy family. With a great big hug and a kiss from me to you, won't you say you love me, too?"
Barney was a fixture in Thing 1's early years. Our favorite game with him took place on the living room floor with me imitating his doofy whine as I made his stubby arms stack blocks that would, when high enough, inevitably tumble down on his prehistoric noggin. It brought each of us delight, but for different reasons.
"Sweetie," I say, "do we even have your Barney anymore?"
"I gave it to Mrs. K," she sobs back. "For her new baby."
Then it all came clear.
Mrs. K was her kindergarten teacher and, three years later, still Thing 1's favorite. When Mrs. K became pregnant last year, Thing 1 volunteered to give the new baby her Barney. This, to me, was an amazing act of charity … toward everyone, including me. For several years, Barney had been relegated to bottom of the basement toy box, only to be heard from when some bigger, heavier, more popular toy landed on top of him, forcing us to hear him gasp for unrequited affection through an ocean of plastic and double-A batteries.
Tonight, while Thing 1 scarfed down thin-crust pizza with her best friend's family during an evening out, she had seen her old kindergarten teacher in the restaurant.
And her baby.
And Barney.
And life as it once was.
"I have Mrs. K's e-mail address," I say. "Do you want me to ask her if you can have it back?"
"Noooooooooooo!" she moans. "I want Barney!"
"Then I'll e-mail her."
"Nooooooooooo! I want Barney!"
This continues for 20 or 30 minutes. We reason. We rationalize. We beg. She finally calms enough so My Love can escort Thing 1 to her room and settle her in.
How does one give back childhood innocence without taking it from another? I wonder. Does mending one heart always mean breaking another? And how much will this all cost me in the end?
My Love comes back in and we ponder and we theorize and we deconstruct our little universe in search of meaning and truth.
Then my wife says plainly, "She said she'd be OK if Daddy bought her another Barney."
In a few days, when the plain brown box arrives, I shall discreetly hand it to my daughter. There will be no acknowledgment, just silence, until she is upstairs, alone in her room, with the door closed and time standing still.
The doctor, to my surprise, almost immediately said we could reduce my daughter’s med doses in the morning and the evening.
