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hope

Note: if you haven’t read about my medical journey, you might want to catch up here and here first. Pics below are mostly from our recent trip visiting family in Colorado. 

Sitting out on a 95-degree patio with the misters blowing down upon us, dining on tilapia with fig sauce, I was asked, “Are you hopeful?”

I’ve been asked a lot of questions throughout this journey, but this one only twice. The first by my mom; the second by her good friend, my dining companion this particular evening. She and her husband were visiting Scottsdale and I, hopeful gal that I am, was in town visiting the Mayo Clinic in a hail-Mary pass to obtain answers on the ever-present pain in my ear. They offered to take me out to dinner.

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The question takes me aback and it doesn’t, because I’m always hopeful, but at times I lose my bearings and break down in a hospital bathroom somewhere. Who wouldn’t? Unless you’re devoid of emotion the grind of daily pain, and the grind of doctor after doctor telling you they don’t know what’s wrong or how to fix it, wears on you. It’s been wearing on me undeniably.

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But am I hopeful? Yes. I’m the type of person who never gives up. If this doctor doesn’t work I try the next (probably having a breakdown in a bathroom, or a closet, or in the arms of my husband in between). I was hoping the doctors here in Arizona would be the last. But even here–the proverbial Holy Grail of medical care–is stumped.

In between bites of tilapia I explained that yes, I am hopeful, despite each loss and gain along the way (there have been more losses than gains). What I didn’t say was that if I lose hope, I have nothing. I have no choice but to keep hoping, and wishing, and dreaming, and praying to whatever deity I believe in (I’m still deciding), because if I stop, and give up, and surrender to this pain, it will take me under. I have no choice but to keep going, if not only for myself, but for my family.

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So am I still hopeful? Yes and no. I’m hopeful that there will be an answer somehow, someday. I’m no longer hopeful that the answer will come quickly. I’m no longer hopeful that one particular doctor will be the answer. It might need to be a combination of ideas from three, four, five doctors that I pick and choose from like items off a shelf.

Here in the grand old US-of-A I feel that the age-old “pill for every ill” mantra still stands tall. Countless doctors have prescribed me countless medications, some doing more harm than good. I believe in pharmaceuticals and modern medicine and I don’t. We’ve come so far in helping cancer patients, HIV, MS, and many other diseases once thought terminal, by pharmaceuticals and other modern therapies.

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But for someone like me, who doesn’t have one specific illness or a diagnosis, pills aren’t always the answer. I can control some of my symptoms with them, but they often provide some awful side effects that make them unworthy of ingesting. For some people hope can come in the form of a pill, or radiation, or chemotherapy. But not for me. I often wish it were the case. Take one three times a day and you’ll be cured. How easy would that be?

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Am I hopeful? Some days yes, some days no, and somewhere I’m in between. But what I have learned is that this journey isn’t up to the doctors anymore. It’s up to me. What’s most unfortunate in American medicine is that you have to be your own advocate. You have to fight for what you need. You have to ask the right questions. Doctors won’t communicate with each other–you have to communicate for them with documentation. And if you aren’t being listened to, you have to be a pain in the ass. Call and visit and book appointments until someone does listen, or have someone with great hutzpah do this for you. Bring a friend or a relative to your appointments and give them your list of questions, too. That way if you break down, or lose your train of thought, or aren’t being listened to, they can jump in for you.

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Years ago (though it seems painfully like yesterday) after my mom underwent her first surgery for stage 4 uteran cancer, I slept by her bed for a week in the hospital, leaving only during the day to shower and change clothes at my college apartment. The nurses would tell me I didn’t have to stay, and my family would tell me we could split the night shift, but I wouldn’t budge. It was a silent agreement between she and I: I won’t leave you, and you won’t die on me.

The other reason? If she needed something in the middle of the night and pressed the call button, the nurses took five, ten, sometimes fifteen or twenty minutes to come. So I would hop out of bed and go harass them to come attend to her. If you can’t be your own advocate, you have to have someone else be.

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My Mom, right, and Charlie the sad cowgirl, left.

My mother is a true survivor, physically and mentally. She beat the son of a bitch called cancer and has been free and clear for several years. She never lost hope, even if she faltered here and there; it was always lingering in her body, fighting off the disease along with her. I try to be like her, even though I’m not staring something as daunting as death in the face. How do you not lose hope when the situation looks grim? All I need to do is go ask my mom. She and my dad have been my greatest advocates since the day I was born.

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I ran across this Post Secret today, a site I read religiously every Sunday morning. It reminded me not only to count my blessings—I have so very many, including two healthy, happy children, a husband who provides me emotional support, a shoulder to cry on, and (among many other wonderful things) great health insurance through his job. What do I (though I wouldn’t call us wealthy) have to worry about? In the grand scheme of things, very little.

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I worry about getting better so my kids have the mommy they deserve. I worry that my husband will forever have to prop me up when I fall down. I worry that there will be no cure—that I will go through life being forever allergic to noise. I worry that I will lose hope.

But am I hopeful today? Right now? Yes. Ask me again tomorrow.

xo

Jenny

 

the pain diary (ear saga part deux)

It’s been too long since I’ve given you a medical update here on the blog. If you’re my personal friend or Facebook friend, you probably know what’s been going on. But if not, I feel like I should let you in on something…something quite crappy going on in my life.

Remember that surgery I had? The one to fix my hearing?

I thought it would be a life saver. And maybe, eventually, it will be. But right now, I wish I had never done it. Because now, you see, I’m worse off than I was before. Before I was going deaf and now I not only need to wear an earplug 24/7, but I also have mind-numbing pain. All. The. Time.

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Let’s take a step back. The surgery was to repair my going-deaf ear by replacing one of the tiny ear bones with a tiny titanium prosthetic. The surgeon said it went fine and that I was recovering well. But I insisted I wasn’t “recovering well”, because I was still having pain.

“I’ve never heard of this,” he said. The words still echo through my mind nine months later. “You should not be having pain this long after surgery.” After a few post-op visits, and hearing tests that proved I was, in fact, gaining my hearing back, he dismissed me with those final words. He wouldn’t prescribe me any more painkillers and insisted on a regimen of Aleve.

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I wept my way to the parking lot in a blur of tears. He didn’t understand; couldn’t understand. Aleve? Aleve wouldn’t cut it. I was not, and am not, addicted to painkillers, for Christ sakes. This was–is–real pain, cutting through my ear and reaching up behind my eye, yanking down my neck like some devil’s hand. It never goes away. Morning, noon, night–pain.

I have a life to lead. A life that was going along swimmingly until I lost my hearing; a life that was going along great until the operation. My two tiny girls have a mommy who is cranky, deaf and frustrated.

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It sounds like I’m blaming the surgeon. Maybe I should be, and maybe I shouldn’t be. I have no diagnosis to go on. I’m just so fed up, living with day-to-day pain. I’ve been to four other doctors—three more on the docket in the coming weeks, including the Mayo Clinic in Phoenix—and no one can give me an answer as to why this pain is occurring. I’ve had MRIs, CTs, massage, cranio-sacral therapy. I manage on a regimen of painkillers that I loathe— they make my mind foggy and sleepy. I don’t want to live on pharmaceuticals, but right now they’re the only things I’ve found that makes the pain manageable. They don’t even fully take it away, just numb it a bit.

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The worst part? Sound makes the pain worse. The simple banter of my daughter requesting eggs for breakfast is murder; if I must attend a loud event I’m screwed for days. I’ve become a recluse, mostly avoiding social situations when I can. The world is loud, and it won’t stop being loud. I don’t blame it. I want the world to be loud–I just want to be a part of it. I want to hear it.

I wear an earplug at all hours of the day. It irritates my ear even further and everyone stares at me curiously. I don’t listen to music. I don’t watch TV. I don’t go to movies. I used to enjoy these things—they used to make me happy, make me relax, and now I can’t.

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I’m back to where I was—deaf—but worse than deaf. My other ear, the one without the earplug, is deafer than it was before we discovered the disease (otosclerosis), and it’s degenerative. My poor children and husband have to repeat themselves endlessly to speak to me. We should just get pads and pens to communicate. The only thing that keeps me sane right now is this—writing—but on the painkillers my brain gets foggy and word recall is sometimes difficult. I think I’ll lose my mind soon.

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My dear Lucy with a paper necklace she made for me. Notice the oh-so-fashionable purple earplug.

I worship those of you who have been living with chronic pain for longer than I have. I don’t know how you do it (how do you do it?). There are so many people worse off than me—I’m just being a pathetic whiner.

But I do feel as though I have to tell my story in case there is someone out there reading who is experiencing the same thing. If that’s you—if you have otosclerosis (conductive hearing loss)—thoughtfully consider your options. It’s such a delicate area to operate on.

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Stay well. Hug your kids. Call a friend. Blast your music. Go to movies. RSVP YES! to that party. Listen to the traffic and the birds and the lawnmowers. I hope that I will be able to again, someday soon.

Xo

Jenny

great summer reads

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Got a sweet summer vacation planned? Or maybe some lazy afternoons with the kids by the pool? Then read on, my friends, because this list is for you.

Here are my favorite books of late. The subject matter varies, but they all have one thing in common: they’ll keep you highly entertained until the very last page.

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1. Where’d You Go, Bernadette by Maria Semple

Bernadette Fox is a quirky, anxiety-ridden Seattle mom who was once a famous architect. Her teenage daughter Bee ignores her, her Microsoft exec husband doesn’t know what to do with her, and her virtual assistant in India performs nearly every basic task for her. She’s slipping through the cracks of sanity. And then, she disappears.

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2. Let’s Pretend This Never Happened, by Jenny Lawson

Jenny’s life story–“a mostly true memoir”–recounts her days growing up with a hippie mother and taxidermist father. Did your father ever “surprise” you with a squirrel carcass popping out of your morning cereal? Didn’t think so. One of the funniest books I have ever read. You might also know Ms. Lawson as The Bloggess.

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3. The Beautiful Creatures series, by Kami Garcia & Margaret Stone

If you know anything about me, you know I lean toward young adult fiction (I’ve published my own YA novel, next on this list!). But it has to be smart, well-written, and inventive. This series fits my high standards, and it was recently translated to film.

On the surface, Gatlin County in the deep, deep south, is as boring and predictable as a clock. But even Gatlin has its secrets, and Ethan Wate is about to find them out.

He’s dreamt about a beautiful girl he’s never met since he was young, and one day she appears in the flesh. Turns out she’s the niece of the town pariah, but there’s a whole lot more keeping them apart than that. Ethan and Lena share a past as mysterious and murky as Gatlin itself, and they’ll do anything they can to uncover it.

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4. Asylum, by me! Jenny E. Miller

Here’s the oh-so-official blurb:

After being found guilty of first-degree murder, sixteen-year-old June Foster is sentenced to life at Washington Pines Sanitarium.

June remains convinced that she was right to kill a man she knew was evil, but as time goes on in the asylum, she begins to question everything she knows. Or thought she knew.

As the events leading up to her incarceration are recounted, she begins to understand that the web she finds herself in is far bigger and stickier than she ever imagined. The warden of the facility, both violent and vindictive, is intent on making June’s life a living hell. 

June’s previous boyfriend, beautiful turquoise-eyed Frank, is the only one she can trust. Or is he?

Caught in the middle of child experimentation with untested drugs, arson, and murders, June Foster is reduced to two options—accept the fact that she has gone crazy, or hatch an escape plan from the asylum to get her life back.

Set in America during the 1950s, Asylum is a book you will not be able to put down. The author pulls you along relentlessly in a page-turning thriller that leaves you wanting more with each sentence—to a mind-blowing and unexpected conclusion you will not believe.

Intrigued? You can pick it up in paperback or on kindle!

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5. The Perks of Being a Wallflower, by Stephen Chbosky

The definitive coming-of-age story. Charlie starts high school as a wallflower, then falls into a quirky group of friends who embrace him for exactly who he is. You’ll wish you could go back and re-do high school as Charlie, surrounded by Patrick, Sam, Mary Elizabeth, Mr. Anderson and all the rest. One of my favorite books of all-time, I try to read it once a year.

The film, by the way, did an excellent job of portraying the book and was written and directed by Stephen Chbosky himself.

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6. What the Dead Know, by Laura Lippman

In 1970, two sisters disappear after a trip to the mall. Thirty years later, a confused, disoriented woman appears, claiming to be one of the lost sisters, accusing an esteemed cop of their kidnapping. Is it really her? Or is it a scam?

A real page-turner, as are other books by Laura Lippman including I’d Know You Anywhere.

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7. The Divergent series, by Veronica Roth

Yeah, yeah. The covers look a little Hunger Games-ish. But it isn’t a copycat: this YA series is outstanding for its own unique merits.

Dystopian Chicago is divided into five factions according to virtue: Candor, Abnegation, Dauntless, Amity, and Erudite. When Beatrice Prior turns 16, she must choose which faction she will devote her life to. Will she stay in the safe, peaceful faction of her birth or follow her heart and become Dauntless? The choice she makes surprises even herself.

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8. Unbroken, by Laura Hillenbrand

I don’t normally select World War 2 anything, but my book club chose this to read and I was smitten.

Louis Zamperini’s WWII bomber crashes into the Pacific, leaving nothing but debris and one leaking life raft. Through it all–sharks, dehydration, hallucinations, starvation, enemy fire, and loss of hope–he survives, only to be…well, I can’t give too much away. It’s not as much a war story as it is a tale of one man’s incredible will to survive. The pages turn themselves in this fast-paced read.

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9. The Slammed series, by Colleen Hoover

Do you remember the heart-fluttering, stomach-flipping excitement of your first love? You’ll relive it these unforgettable books.

Layken moves to a new town with her mom and younger brother after her father’s death. A rock for them both, she holds the whole family together, not easily distracted by boys, clothes or other frivolities. But then she meets her next door neighbor Will, three years her senior, and the butterflies flip her upside down. Fate has other plans for Layken and Will, as real life gets in the way of their budding romance.

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10. 11/22/63, by Stephen King

No, this isn’t a monsters-in-the-closet Stephen King book. He’s a versatile, incredible author, and his latest book is (in my opinion) one of his best.

What if you could go back in time and change the future? Jake Epping discovers he can do exactly that when his friend Al, a diner owner, enlists him on a mission that’s engrossed his entire life. Jake steps through the diner’s storeroom and right into 1963. His mission? Stop Lee Harvey Oswald. Keep JFK alive. But it won’t be easy. 1963 doesn’t want Jake Epping there. Not one bit.

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11. Gone Girl, by Gillian Flynn

If you haven’t read Gone Girl yet, you’ve been living under a rock. So come on outta there, pick up a copy, and start reading one of the most thrilling, page-turning mysteries to ever grace the shelves of a bookstore.

Nick and Amy look like the perfect couple from the outside, married for five happy years. But then Amy goes missing. The cops look straight to Nick, who isn’t doing himself any favors with his less-than-stellar attitude. Amy’s diary paints her as the perfect wife, and Nick as an abusive husband. It should be an open and shut case, right? Right?

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12. The Fault in Our Stars, by John Green

Oh, John Green. This is one of those books that, upon finishing, I clutched to my chest in a big bear hug and cried for a good five minutes. And then I flipped back to page 1 and began again.

Hazel’s Cancer Kid Support Group just got a whole lot more interesting. Augustus Waters is funny, handsome, and seems very un-sick for being a cancer kid. Hazel’s pessimistic, I’m-gonna-die attitude is about to change. She’s about to fall in love. Hard. And so is Augustus.

Funny, quirky, beautiful, and the most unique book I’ve read in a very, very long time. A must-read.

the other side of parenting

I realize I’ve been quite polarized in my children stories on this blog; they all seem to be about catastrophes involving poop and shopping carts. I’ve neglected to share the other side of parenting—the one where you have these beautiful creatures in your care. They love you to death and the feeling is more than mutual. They snuggle you, cling to your leg simply because they like to be next to you, and speak spontaneous “I love you”s. The moments where your heart feels so big it could burst into a million particles? Those moments happen everyday along with the poop and shopping carts. Those moments are what make parenting worth it.

I had one of those moments yesterday. Dave was working late and I had been on my own with the girls for 10+ hours, 3 more to go until bedtime. It was a stunning day: 65 degrees, cherry trees in bloom all over the city, dotting the landscape with pink petals like snow. Yes, we’d been out of the house most of the day, but I decided one more trip before bed was in order.

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I tossed some leftover pizza, satsumas, apples and carrots into a picnic basket. In went a ball, a blanket, two baby dolls in various stages of undress that Charlie can’t leave the house without, and a stuffed unicorn night light named Rainbow Happy (Lucy’s must-have). We were set to go to the park for a picnic dinner.

Have you ever had one of those times where the stars align? Both kids are happy, in need of nothing, not complaining or whining or yelling about something? We had two hours of those moments, one after another, at this dinnertime picnic. The girls sat happily eating on the blanket, gracefully sharing their toys with an occasional kid visitor. When they weren’t eating, they’d run and play, then come careening back to our picnic and tackle me in a bear hug. My heart felt so big, and I felt so blessed to have created these two tiny, independent, miraculous people, that I wanted to burst.

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I’m going to tell you something about parenting, something no one told me before I had kids: there will be fewer good moments than tough moments. I’d say the ratio is about 70 tough/30 good. But that 30%–those moments that are wonderful and happy and blissful–are what will stamp your memory permanently. I remember all of the wonderful times and easily forget the struggles. It’s what allows us to keep having babies, expanding our families—we forget how hard it is to be sleep deprived with a baby at our breast for hours on end.

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We’ve been delicately toying with the idea of adding a third child to our family, when only last year I was vehemently against it. I gave away all our baby things. I started getting in shape, working on the house, building a career with my first book release. Everything in my life pointed to no more children, but moments like last night at the park make me think it’s possible. The easy thing to do would be to quit while we’re ahead, but I’ve forgotten how hard a newborn is. How hard it is to juggle a baby and a toddler. How my eyes looked after days of no sleep.

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When the sun was setting and a cold breeze swept across the park, we headed for home. The girls nestled in their car seats, singing along to a song on the radio, as the sun turned the sky pink and purple. They were so sleepy they hopped into bed, hair messy, feet green from the grass. And as I sat on the couch with my tea, reflecting on the day, I realized it was one of those 30% days. They’re few and far between, but I remember them always.

 

My book is out!

I’m happy to announce that my debut novel, ASYLUM, is released today!

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See my previous post to win a copy or buy on Amazon for Kindle or in paperback.

Best day of my life–thank you all for your support!

win a copy of Asylum!

*Contest Closed*

My debut novel ASYLUM hits Amazon monday, and I’m giving away a FREE copy here!

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Here’s the official blurb:

After being found guilty of first-degree murder, sixteen-year-old June Foster is sentenced to life at Washington Pines Sanitarium.

June remains convinced that she was right to kill a man she knew was evil, but as time goes on in the asylum, she begins to question everything she knows. Or thought she knew.

As the events leading up to her incarceration are recounted, she begins to understand that the web she finds herself in is far bigger and stickier than she ever imagined. The warden of the facility, both violent and vindictive, is intent on making June’s life a living hell.

June’s previous boyfriend, beautiful turquoise-eyed Frank, is the only one she can trust. Or is he?

Caught in the middle of child experimentation with untested drugs, arson, and murders, June Foster is reduced to two options—accept the fact that she has gone crazy, or hatch an escape plan from the asylum to get her life back.

Set in America during the 1950s, Asylum is a book you will not be able to put down. The author pulls you along relentlessly in a page-turning thriller that leaves you wanting more with each sentence—to a mind-blowing and unexpected conclusion you will not believe.

*Contest Closed*

Want to win a free digital copy for your Kindle, Nook or iPad? Leave me a comment below telling me the title of your favorite book, and you’ll automatically be entered to win. Contest ends Friday, March 29th. 

And the winner is…

Bill! Congratulations Bill, I’ll be emailing you asap ;) Thanks everyone for entering!

 

charlie vs. target

I had to get them out of the house. Or maybe I just had to get myself out of the house. At any rate, I decided a trip to Target to get the one thing we needed (diapers) would be an excuse to get them up and moving.

I knew in the back of my mind this was a bad idea. Taking two grumpy, possibly-on-the-verge-of-getting-sick, possibly-on-the-verge-of-killing-each-other girls to a bright, shiny store with full of toys and candy and makeup?

What could possibly go wrong?

Everything. Everything could go wrong.

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It started in the parking lot. Charlie refused to come out of the car without her million-pound owl backpack, which contained a toy car, a maraca from Mexico, two bobby pins, a deck of cards, a sweatshirt, a bunny, a water bottle, five goldfish crackers, and a crumpled up picture of an ogre she calls Marcus. The backpack was too heavy, and she used up all of her happy energy carrying it from the car to the store. Then all that was left was the evil energy. The Mom-I-want-to-kill-you energy.

So there she was, 28 pounds of malevolence in a cherubic, Charlie-shaped body, ready to tear through Target with a vengeance. But, optimist that I am, decided to take my chances.

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We started on the toy aisle, so Lucy could pick out a birthday present for her little sister. Lucy played quietly with a ball and a baby. Evil Charlie grabbed a toy shopping cart full of toy food. Then a pretend car seat for a pretend baby. She had no energy left to carry these things, but in her mind she was not leaving the store without them. Then, she decided, the toy shopping cart would be great as an assault tank on the animal cracker display. One bash and the whole thing came tumbling down all over her. A nice employee came over to help us clean up.

The shopping cart had to go. But as soon as I tried to take it from her evil death grip, she let out the first Scream. (Side note: our Target is two stories. It’s huge. You could likely hear her Scream, with a capital S, all the way upstairs in the break room.)

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It was at this point that I kicked into survival mode. As in: survive this moment, then get the hell out of Target before someone recognizes me. I let her keep the shopping cart and push it to our next destination: the diaper aisle, maybe ten yards away. 28-pound Charlie was pushing her pretend shopping cart, clutching her pretend car seat, and lugging her 50-pound backpack, and she refused help.

It took us 10 minutes to get to the diaper aisle, because she had to stop at each display along the way and knock everything off at eye level. She set her car seat down to do this. She rested her shopping cart next to her, then grabbed everything she could reach and dumped it on the floor. Then when she was satisfied she’d done enough damage, she picked up her car seat and rolled her shopping cart to her next target (no pun intended). I trailed behind her; picking everything up and put it back as fast as I could. I didn’t try to stop her at this point—I was just trying to get to the diapers and go. I saw the evil churning behind her eyes. She was taunting me: just try to stop me mom, and I’ll the out The Scream again. You’ll see.

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We made it to the diapers. We grabbed a pack and kept moving. We were almost to the cash registers. I could see them: the Holy Grail. But then, to our left, a distraction: girl’s hair accessories. They’re on a giant rack, each one of them shiny and pink and crack-cocaine for little girls. Lucy examined them gently. Charlie rammed her shopping cart into the display and started throwing hair clips and headbands on top of the pretend food.

One item she didn’t throw in the cart: a pack of four rhinestone bobby pins in neon colors. This one she clutched possessively with her sharp talons. This one is mine, Mommy. For the moment, she’d forgotten about the shopping cart (which we’re not going to buy) and the car seat (which we’re not going to buy). She was fixated on the bobby pins, and they’re $3, so I’m just going to go with it and get the hell out. I started cleaning up her hair accessory tornado. I swept the shopping cart and car seat discreetly under a t-shirt rack for some nice Target employee to discover later.

“Nooooooo Mom! My shopping cart!”

This was good. She was only fixated on the shopping cart and the bobby pins now. She’d forgotten about the car seat. Two items—two items I could work with. I could negotiate my way out. And I could tell by the crack-cocaine glint in her eye that she was going to choose the bobby pins.

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“Char, you can only have the clips or the cart. Not both.”

Then The Scream came. She threw herself on the floor and started army crawling under the hair accessory rack. But the display rods were too low; she got snagged. She started kicking to get free, and tangled herself even further. One leg got stuck, and her backpack snagged on a rod. I was terrified she was going to impale her eye if she kept flailing. I grabbed her and yanked her free. She bolted to the shopping cart, ran and rammed it against the elevator, collapsing to the floor in a sob.

It’s at this point that Lucy stepped in—my saving grace. She approached her sister gently.

“Char, you can’t have both. You have to pick: the shopping cart or the hair clips. That’s what mommy said.”

Charlie snuffled and moaned. Snot poured from her nose. She looked up to her sister.

“Shopping cart.”

Okay. Shopping cart. We had a deal. I put the toy shopping cart in my own, attempted to repair the hair accessories display, and picked up Evil Charlie. Only she wasn’t Evil Charlie anymore, she was just tired, pitiful Charlie. She surrendered and allowed me to carry her—and her giant backpack—out of the store and into the car. We escaped with $9.99 worth of diapers and $12.99 worth of shopping cart.

It’s their new favorite toy.

Did I give into the tantrum? Absolutely. But it was my fault in the first place; I knew in my gut she would have a meltdown. So I chalked the $12.99 up to a lesson learned and went on my way.  Four years of being a mom and I still don’t have it all figured out. I don’t think it’s even possible to have it all figured out.