Patience is an effing virtue

They say God/Mother Nature/fate never gives us anything we can’t handle. I just wish He/She/it would put it to a committee first.

It’s my personal belief that we are given the exact opposite of what we can handle, that we are tested most in the areas where we are weakest. It’s probably the universe’s way of making us grow as human beings. Or something.

Take me: I am terrible under pressure and have a temper like a light switch. So what did the universe do? It gave me two kids who require a tremendous amount of patience.

To make it worse, before I had children, impatient parents were the kind I hated the most. I witnessed their outbursts and assumed they were miserable people who shouldn’t have reproduced. That may be true in some cases but some of us are really nice.

We’ve just been pushed too far.

Take, for example, a recent day out with my kids.

To start off, I was a wee bit stressed. The kids were off from school and an ice storm was coming so I knew we were facing days cooped up in the house. I was also sleep deprived, because my 4-year-old had woken me up at 2 a.m., just to ask how I was. The plan was to get them out of the house and moving around, and then deal with the dishes, laundry, etc., later.

Going out with my kids can be — interesting. Jack’s autism means he can be single-minded to a maddening degree. His current obsession is hand dryers and he must check every public restroom to see which kind they have. He also needs to know exactly where everyone is, all the time.

Charlie is 4 but has yet to master toilet training. Also, her speech can be difficult to understand and her receptive language is delayed. As such, we have frequent and frustrating exchanges in which one of us is telling the other something really, really important that just can’t be understood. Often tears are involved on both sides.

We headed to Monkey Joe’s, one of those bounce house valhallas that kids love and parents loathe. I particularly hate it because I always get static electric shocks out the wazoo when we’re there.

Since school was out, the place was packed with squealing kids. Every 20 minutes, Charlie would ask to use the bathroom and we would push through the crowds to get there, but every single time she had already filled her diaper. She has this bizarre ritual of greeting her waste, asking after its health and saying how happy she is to see it. She bids it farewell and sometimes even cries when we throw the diaper out. (Yeah, we use disposables and therefore suck.) Perhaps it’s her Celtic blood that makes her take a few minutes to reminisce on all the great times she had with that Pull-Up. Whatever it is, it tacks an extra five to 10 minutes on every trip to the bathroom. Jack happily accompanies us each time to study the hand dryer.

“It’s an Xlerator, Mama!” he shouts happily.

By lunch time I have been zapped by static electricity roughly 5,000 times and I’m ready to leave.

On the way home, Jack asks if we can eat at McDonald’s. Why not? I think.

Yes, I sometimes let my children eat McDonald’s but before you go all Jamie Oliver on me, let me stress the sometimes part. Also, that part about it causing cancer?  I’m not buying it. Besides, my kid already has cancer and I figure, what are the chances of the universe kicking us in the nuts twice, am I right or am I right?

Anyhoodles…

…we have never been to this McDonald’s before and the kids are thrilled by the play area, which is teeming with children climbing what looks like a primary-colored intestine.

My son inspects the insides of the tubes and finds the ones that lead to the “baby” slides. My daughter starts climbing and doesn’t stop until she is waving at me from a window about 20 feet off the ground. She has joined a pack of 10-year-old boys, who don’t see her as a 4-year-old child but as an inanimate object they can push past and climb on top of to get where they are going.

After a few minutes, Jack comes over and asks for Charlie.

“She’s up there,” I say, pointing to the highest tube.

He looks horrified.

“That’s so high up. She’s going to get scared.”

“She’s not scared, buddy.”

Suddenly, I hear her voice right behind me.

“Mama! Hi, Mama!”

I turn around but she’s not there.

“Mama!” I hear again. “Mama! Where are you?”

It takes me a minute to realize she is at the top of the tallest slide and that her voice is carrying through the tube.

Jack starts to cry.

“She’s stuck! She’s stuck up there!”

“She’s not stuck, buddy. She’ll come down when she’s ready.”

But she doesn’t. Several boys slide down and one of them tells me, “She’s in the way. She won’t come down.”

Oh, great.

“Charlie!” I call. “Charlie, come on down.”

And then I hear the words that make my stomach sink.

“Help you?”

Crap.

“You can do it on your own, sweetie,” I call up cheerfully but I’m not convinced. “Just come down the slide. Or turn around and climb back down.”

There is a pause and then again:

“Help you?”

Jack cries harder.

“She’s up there all by herself!” he sobs. “She’s so scared.”

I kneel down in front of him and put my hands on his shoulders. Damn it, another electric shock.

“She’s going to be fine,” I say.

“But she’s all alone!”

“Jack, I need you to be a big boy and stay right here.”

I turn to the opening of the tube.

“I’m going in.”

Even though I am short, climbing up those pipes is nearly impossible. The angles are so steep I have to belly crawl, pulling my body weight with my arms. Kids scramble past me, claw over me, to get where they are going. Seriously?

It occurs to me as I inch up that no one has cleaned this thing in a while, if ever. It smells like feet. The plastic is grey with dirt and stray hairs cling tenuously to the bolts holding it together.

I hear Jack sobbing on the ground and Charlie calling to me from above. Another group of kids comes up behind me and tries to get past but I turn and block the tube with my feet.

“Guys! Seriously. Stop. Wait your turn.”

One tries to push past me again and I grab him by the arm.

“I said stop! Get behind me and WAIT YOUR TURN.”

This time they listen and we inch up the swerving tubes as a pack. We finally round a corner and there’s my Charlie, smiling sweetly, her feet dangling down a — HOLY HELL, they call that a slide??? It’s practically a vertical drop.

An unmistakable smell hits me and I realize that the sight of the laundry chute McDonald’s is calling a McSlide must have really scared the crap out of her because she has filled her diaper. The last diaper we had. Damn.

“Mama!” she cries, grinning, and crawls to me. I reach out for her and as my hand touches her shoulder all the energy I’ve built up sliding along plastic tubes is discharged in a massive, painful electric shock so strong I can hear the pop.

“HOLY F*CKING SH*T! F*CK! F*CK! F*CK!!!”

I grab her wrist and pull her back down the tubes feet first. We emerge into the relatively fresh air and Jack smiles through his tears.

“Mama! Charlie!” he cries, and throws his arms around his sister like he hasn’t seen her for weeks. I smooth my hair from my face and stand up. Suddenly I notice the once loud room has gone quiet and that the parents are glaring at me.

“What?” I want to shout.

And then it hits me: the tubes. The tubes carry sound. They carry sound really, really well. Every profanity-laced sentence I uttered on the way up and down, every time I yelled at their kids and my own, has been carried and broadcast to the room with alarming clarity.

Slowly, I lean over to Jack and say, “Get your shoes.”

“But — but — but I’m having so much fun!” he cries.

Turning to him, I growl in a there-is-no-Dana-there-is-only-Zuul voice: “We are leaving. NOW.”

We pack up and go quickly and quietly, our tails between our legs except for my daughter, who doesn’t have room because there is an enormous pile of crap in her pants.

The point of all this is that yes, I am still working on my temper. But I have dropped a habit equally as bad, if not worse: I no longer judge parents who are losing it for no apparent reason.

What I now know is that there’s ALWAYS a good reason to be yelling at your kids, and that when I come across a mom — or dad — turning purple with rage, I’m witnessing only a part of what could well be a trying day. I get that I wasn’t there when she patiently answered her children’s questions and calmly responded to their needs. I don’t know how many times she has been zapped by static electricity, or listened to her daughter eulogize her own feces, or heard her son wax lyrical about the Xlerator’s newest model.

All I can say is that if the universe is indeed testing us, it really better have an excellent reason, such as strengthening us or improving us in some way.

Because otherwise, it’s just being a prick.

llll

The other “c” word

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.

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