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Entries in CHOP (10)

Thursday
Jul072016

Learning to Fall

For the third summer in a row, in the first week of July, Piper has fallen from something and broken bone(s). First, when she was 7, she fell off a pony on a trail ride. He caught her jaw/neck with his front hoof on the way down, and when she hit the ground, though he tried desparately not to, he stepped on her chest, breaking ribs, her collarbone and puncturing her lung. Two ambulance rides, two days in ICU, and eight months for her bones to mend.

 

Back on the horse literally and figuratively a year later, she was jumping a palomino at a friend's barn, and came off over the handlebars, breaking two bones in her right elbow and upper arm. Six weeks in a cast and six months of PT to regain her range of motion.

This summer, her first day of rock climbing camp, she was bouldering (climbing without ropes) a tricky V2, and at the top, 9 feet up, missed a hold and unfortunately, missed the landing mat as well. Sprained wrist and elbow fracture, left arm.

Another sweltery summer with a cast.

 

Piper and Mercy, July 2015

 

 

 

 

 

 

 

Let me back up. This started last winter, with gymnastics. After two tough tumbles off a horse (my sport), J and I agreed to her pleading to try a season of gymnastics. 

 

 

Though we both had reservations about the culture of the sport, the inherent wear and tear on developing bodies, and it being a good fit for her, we thought it might help her learn to fall. 

We bought the leotards and basement tumbling mats, learned a whole new vocabulary--brannies and Bratayleys. When the Quiet Room at the gym where I usually graded papers was closed and I had to sit in the general waiting area, I suffered through disparaging stage mom monologues that made hockey parents sound like Dr. Sears.

"Mine's that one with the big butt who still can't get her pull over. Do you see her? Pathetic. She's never going to get her goddamn ass over the bar! I told her she has no hope of ever advancing if she can't pull this off. I make her practice at home, an hour each night, but, it's useless. Ugh, I can't watch." [pound pound pound on the glass] "Get your fat butt over that bar!"

This hopeless kid? She was five, maybe six.

Piper enjoyed the class, but complained that there was a lot of waiting in line. And then, one night in February, I said the wrong thing. She was watching floor routines on the computer, musing about competing and I told her we weren't on board with that, that to us, gymnastics was about learning body control and balance, having fun and tumbling, but she was probably too tall for the sport, long term. Though we don't have a crystal ball, she is already 4'6", and in the 90th% for height.

"What?" Piper narrowed her eyes. She paused YouTube and googled, "world's tallest Olympic gmynast." For the next ninety minutes, she railed at me, sobbing. "Why would you let me do a sport where I have no chance of winning in the Olympics?!"

After the storm subsided, she came back out of her room with the laptop, wiping her eyes a little sheepishly. 

"Here," she turned the screen to me. "Watch this. This is what I want to do." It was a video of Brooke Raboutou, the Colorado-based world-record setting rock climbing phenom. Later, when I dug back in the search engine history, I saw that Piper found this because she had googled, "best sport for tall girls with long arms and legs."


the tree from which our apple fell, New Mexico 1994

Perfect. For years, in college at Arizona State University, J's whole identity was as a climber. He traveled all over, Hueco Tanks, Joshua Tree, Smith Rocks--hiking in, sleeping on cliff faces, pushing himself. Plus, though we ride horses together, all three kids golf and play hockey, Piper has been hungry for something to do with her dad, just the two of them.

 

 

 

They joined the local rock gym. On her second day, she was conquering routes where I had maxed out, back in the pre-kid days when J and I used to climb. She asks to go to the gym nightly, begging to do one more route when her body is clearly maxed, hanging by her fingertips off the lip of our stairs to increase her grip strength. 

 

 

 

Piper and J take on a challenging 5'10

We agreed she may have found her sport. Solitary, independent, constant opportunity to reach farther, try harder, climb higher. She has this quiet, jutting chin determination, a steely, silent core that is just waiting to be challenged.

And then on Tuesday morning, her third route of the long awaited rock climbing camp, she fell.

The thing is, the staff didn't realize it, didn't even write an incident report, because she kept climbing. The rest of the day, she ate snack and lunch, tie-dyed her camp shirt, played team building games and continued to quietly top rope and boulder, with a broken arm.

When I asked her why she didn't have them call me when it happened, she said simply, "Because I wanted to keep climbing."

We talked about it last night while we went on evening walk with Sampson. I told her the coach had called to find out how she was, and was astounded to learn her arm was broken.

"Did you ask him if I can finish camp later in the summer, when my cast comes off? Will it be too late to try out for the team?" she worried, and I promised we would talk, thinking one positive from the fall is that at least now the coaches know this about her. One of the biggest challenges in coaching Piper will be teaching her to respect her limits, and how to fall.

"I'm stubborn, aren't I, mom?" Piper mused.

"Pip," I told her, "you're tenacious."

"Isn't that the same as stubborn?"

I thought about this.

"Well, to me, stubborn has a negative undertone. Listen to the word--stubborn, synonym: obstinant. I picture a grouchy, hard, face, someone who has dug in their heels, maybe to their own detriment. But tenacious feels like ferocious. Like a tiger. Like someone who will not give up, even when things are hard."

"Like someone who keeps climbing," Piper said, swinging her cast hand in mine, "even if they fall."

* *** *

Waiting for the cast room, CHOP, July 2016

 

 

 

 

 

Friday
Jul112014

World's Most Famous Bubble-Wrapped Harmonica Player

planning his futureWhen our oldest son was born, almost thirteen years ago, he weathered a long stint in the NICU in the Childrens Hospital of Philadelphia. Sitting over his isolette, my husband told Hayden's nurses, "Remember this kid's name. You are looking at the future, world-famous bubble wrapped harmonica player." They laughed while he explained that after everything we had watched our son go through, all traditional sports were off the table. For our son, there would be no football, baseball, lacrosse, hockey, soccer... The list went on. "And none of those big string instruments either," J joked. "Do you know how heavy a cello is, what could happen if that fell on him? He'll play the harmonica. In bubble wrap. Nothing dangerous about that."

 

 

 Fast-forward five years later, to November 2006, when we realized that winter in the Northeast with two little housebound boys might cause us to do bad things to one another. Against all our earlier proclamations, we signed the whole family up for ice hockey. Hayden became a goalie--safest position on the ice--and his little brother followed in his footsteps a few years later. 

My Dad would watch me heft their giant gear bags into the car, bigger than they are, and sigh, "Boo, really, have you given any thought to the harmonica plan?"

I remember Max's second Triple A goalie game last year, when his team had no skating subs. They were grossly outmatched, getting killed, 2-16. I watched from the stands as the shots kept coming--rattling off his face cage, right in his gut, a hack to his exposed wrist as he covered the puck. 

"At this level, just so you know," one of the dads told me, "they don't stop shooting when there's a blowout." I could see Max's shoulders shaking with sobs as they scored on their seventeenth breakaway, and then they fucking celebrated, and it took every scrap of restraint I had not to storm out on the ice like Susan Sarandon in Safe Passage, yelling, "Alright! Enough already!" pick my kid up under my arm and carry him home. The physical shelling was horrible, but I also feared was what was happening inside. 

Hayden up a tree, 2012

 

 Fastforward another few years to Isla de Utila, where we lived for six months on a remote Caribbean island. Here, our children swam with whale sharks, broke a world record SCUBA diving, monkey-climbed limbless palm trees, and jumped off the roofs of rickety waterfront bars into the water. They ran barefoot and snorkeled through caves. The closest medical care was on the mainland, a flight away.

 

On the whole, we have done a lousy job of bubble-wrapping our children. They play ice and roller hockey, lacrosse and soccer. They swim in questionable water, bounce on trampolines, and have turned our driveway into a longboarding body luge. They rollerblade and skateboard, leap off boathouses and rope swings, ride bikes and horses. 

 

 

 

Fastforward to last week, when Piper (7) and I headed out on the trails behind the barn where she has been riding for the past 9 months. It was a dreamy, much anticipated mom and Pip moment. Though we ride in the arena together often, and I have loved returning to my childhood love of horses with my daughter, this was our first trail ride. 

It was going beautifully--a little paddling down in the creek, our horses quietly walking over branches the recent summer thunderstorms had downed, and then a little trot down a country lane. Piper called to me she was losing her stirrup, and I turned to tell her to stop, when I saw it happen. She was falling perfectly, over the horse's left front shoulder, poised to land with a tuck and roll that would protect her helmeted head, and put the majority of the landing on her impact vest. It was looking like the kind of fall that would shake her up, but she would ride home from. Except on the way down, the horse's hoof caught her in the neck, and then despite his best efforts not to, when she hit the ground, he stepped on her chest and shoulder, breaking her collarbone and ribs, but worse, puncturing her lung. 

Back in the ICU at CHOP, with Piper on a rebreather, as I curled at the foot of her bed like a pet mommy and watched the numbers on her machines, as the adrenaline of the day ebbed and I replayed and wallowed in gut-souring what-ifs, I remembered almost thirteen years ago, and our vow to raise the world's most amazing bubble-wrapped harmonica players. I was physically sick over the fact that I had broken our little girl, that I had lead her to this sport I love, and she was here because of it.

 

"Pip," I told her, while the machines beeped and her oxygen hissed, "there's a saying about how you 'have to get back on the horse.' Most people use it as a metaphor, meaning don't let hard things that have happened scare you, or face your fears. Horsepeople use it to mean don't end a ride on a fall or you'll lose your nerve. But honey," I took a deep breath, "this was a big fall. And you do not have to get back on the horse. Ever, if you don't want. We can stop riding now."

Let me say again that I love riding. I grew up riding throughout my childhood. When I was sixteen, I managed a three-horse barn. I took my naughty off-the-track Thoroughbred to college with me, trained beach-ride horses in Grand Cayman and rode as a jockey in a Caribbean race season.

 

 

When our daughters were 5 and 6, my sister and I bought a 3-lesson Groupon to a local stable. "Let's see if it takes..." we said, remembering our years with horses. It took.

Piper and Callie, 2013I have loved watching Piper evolve as a strong, independent, confident little equestrian, because I know from my own childhood that all those elements carry over into life. We both had plans to start competing this summer, and she talks of the mother-daughter barn we will open, after we visit the ponies of Chincoteague, when she has her golden birthday, age 19. 

"What?" Piper said, stricken, her voice garbled by the mask. "I'm not going to quit riding!" 

Later, while she slept, I texted one of my oldest friends. We grew up riding together, harmonizing 'You Are My Sunshine' and belting out Reba McEntire as we cantered on mountain trails, galloping around cornfield perimeters and vetting boyfriends by how they acted around horses. She lives across the country, and her daughter rides, a gutsy, fourteen-year-old pole-bending barrel racer. 

--I feel horrible for bringing pip to this. Worried she only does it for me, but she says she still wants to ride. Tell me about Lu's worst fall... I wrote, hoping she would tell me about something I hadn't remembered, something that stopped her motherly heart, that she had replayed in her head as often as I was replaying Piper's--the horrible sound of his hoof connecting with her jaw, the sight of the jagged collarbone tenting her skin. Tell me we'll get over this, is what I meant.

--Lu's worst fall was out of a tree! She wrote, and I remembered her phone call from across the country several years ago, Lauryl's two broken arms, the beautiful but banged up face from the branches on the way down. And I have a darn hard time getting her to wear a helmet and impact vest while playing in the yard! 

Here's the thing she was telling me: this was an accident. It was not the fault of the horse or rider, or maybe even the mom. She was as protected as she could be, short of bubble wrap, in a helmet and impact vest. (Stay tuned for me to write more about the importance of those later. This could have been far, far worse.)

And I still think, how did we fall so far, from the parents who promised, a few floors in CHOP and thirteen years ago, to keep our children safe?

Because life is dangerous. Because there are accidents. 

But there are rope swings to leap from, and trees to be climbed and ponies to be ridden. There is creating a partnership with a person or an animal that stretches our expectations and enriches our lives. There is the feel of the cold winter air in your lungs when you skate across the silver ice at night. There are moments when your team carries you on your shoulders and celebrates your season win, when you conquer a fear or stomach a shelling you didn't think you could do.

Max (in red) and his team take the championship, 2014

 

There are summer mornings when you grin at each other and jump out of bed, pull on your breeches and boots to beat the heat to the barn, and you ride, side by side on your matching ponies while their tails swish and you beam at each other. Piper is home now, expected to make a full recovery, and in a few months, we will both don our impact vests, get back on the horse, and put what has happened behind us.

Summer ride

Because though we have never tried it, I think the view from the podium of the Bubble Wrapped Harmonica Finals might be a little colorless and flat.

* *** *

Wednesday
Sep042013

Twelve years is a long time

This time of year is always tainted by the bittersweet. The return to routine, letting go of the ease of summer, everything exploding, then disappearing like the spring-loaded touch-me-not seeds in the jewelweed clumps my brothers and I used to set off on our September walks to school. 

Twelve years ago on September 4, we welcomed little Jonathan Hayden into our lives. For years afterward, the anniversary effect of this event, coupled with the September 11 attacks and almost losing Hayden after his first surgery have made this time of year bittersweet. I wrote about it several years ago, here, and here.

But twelve years is a lot of distance between now and our baptism by fire into parenthood and the anxiety of raising a family in uncertain times. Twelve years later, I would say while our greater world is no more certain, things here have progressed to a point where I only see and feel the joy. I can still remember the dark, hissing pumping closet at the hospital, and how bewildered I was to find myself in there in a long dress and tights, what seemed appropriate attire for early fall but totally inapprorpiate for pumping milk for my baby living on machines in the next room. I remember seeing the footage on CNN while I was trying to negotiate this small dilemma, the jumpers from the burning World Trade Center, stick figures, really. And feeling numbness. I remember walking outside of the hospital, escaping for a brief breath of fresh air, and seeing the cabs by the UPenn with turbaned drivers and handmade signs in the back windows that read WE ARE SIKH, FROM INDIA. WE LOVE UNITED STATES. I remember all of this, but with distance and the luxury of hindsight. Twelve years is a long time. 

Today, Hayden is healthy. I no longer worry that the hospital will take him back, an irrational fear from the early half of his life. I sometimes Google anxiously, about the other shoe dropping, but mostly I try to just enjoy who he is and where we are, even in the face of world uncertainty. 

 

Hayden, Water Cay, 2013

Tuesday
Mar192013

Momstinct Part Two

Last week I wrote an entry on Momstinct, or the fine line between trusting your mother's intuition and simply spinning your worry wheels. The update is that two doctors have told me they do not believe what is going on with Hayden is a tumor but more likely related to the condition he was born with now causing ENT problems. We consult with the surgeon who did his early operations next week and feel confident that we are in good hands here at CHoP. We have expected further surgeries since he was little and are just so hugely relieved that the sky is not falling.

I'm not prone to panic, but I don't always have the best judgment when crisis strikes. My family jokes that I am the one who will stand paralyzed over a choking victim mentally debating whether or not this is really worth a call to 911, because I don't want to bother them, and what if I call, and by the time they get here, the person has hacked up the hot dog and is cheerfully eating a slice of watermelon? I'm the one who jumped up, in the midst of my throat closing over an allergic reaction to crab at a black tie function and quietly left the table, because I didn't want to embarass myself or my husband's colleagues. I figured it would be more dignified to die in the bathroom or at least the bar, which is where someone saw me and saved my life.

Because of this, I have married, made friends with and generally surround myself with people whose instincts I trust. They have been so valuable as I navigated the fears of last week. 

So here is what I know about Momstinct. It's real. It comes up when something is not right. I think of my friend Linda Davis, who diagnosed her own toddler's autism back in 1999 when it wasn't a buzzword, when she had only seen the movie Rainman, when her own pediatrician said it wasn't true. (Read her story here) Her momstinct was devastatingly correct. 

 

And I think about my friend Jess, who wrote in the comments on the original article that her eyes flew open at home the instant her nine-year-old tripped over a rope and smacked his head on a concrete floor. (But she notes that the image that came to her was a much more dire crisis--him running into the street and being hit by a car.)

 

Momstinct exists for minor situations, like the mother who looks up and realizes the house is too quiet,  and finds her toddler baby-powdering the living room. It exists as a warning--that guy who is just a little too friendly in the check out line? Have someone walk you to your car. It exists to steer us out of danger, like the creepy opthamologist who told my fourteen-month-old he loved her and kissed her on the lips at the end of an exam--we never went back and we reported him. 

This week, Momstinct sent us to the right doctors who will help us figure out the best path for Hayden. I believe Momstinct is real, that it serves a purpose, but like the boardwalk fortune teller with the bourbon breath and the fake eyelashes, my momstinct might not always be 100% accurate. 

* *** *

With thanks to everyone who has held us in our hearts as we navigated this past week. 

 


Hayden and I conquer the long trail to the top of Multnomah Falls

Wednesday
Mar132013

Momstinct

Eleven years ago, our son was born with a rare craniofacial syndrome. It was a lot to manage in his early life, but maturity has brought the promise of easier years, and only some monthly appointments and the annual visit to the Childrens Hospital of Philadelphia, our checkup with the team of eight specialists remains.

In recent years, Hayden and I have come to regard his summer craniofacial team evaluation as a pleasant date. We take the train to the hospital, we visit with all the doctors who have seen him through surgeries and therapies, we eat sushi lunch in the atrium cafeteria, we pick up trash in the city when we see it and we leave with the assurance that all's well, see you next year!

But this past summer, there was a hiccup, a road bump at ENT. They saw something, tissue, bulging. A mass. We waited for an hour while specialists paraded in and peered up his left nostril. I grilled him—had he been hurt? Bumped heads with his little brother while wrestling? Maybe, Hayden shrugged. Maybe he had gotten hit in hockey, he said, but I wondered about his helmet, and the protective cage?


We were sent for a CAT scan; the results a relief. ENT said it looked like a hematoma, a swollen, severely deviated septum. We knew Hayden’s anatomy included asymmetry—as an infant we could not put a feeding tube up the left side of his nose. We were told to go on with our life...

“And keep an eye on it.”

 

Fast forward six months to last Christmas. Hayden was snorting, or as well call it 'snucking'; inhaling the snot in one swift sniff down the back of his throat frequently. We wrote it off—change in climate, allergies, a cold, a sinus infection. I didn’t do anything about it. I’d read articles about the burgeoning Superbugs, a result of overprescribed antibiotics. Whatever it was, his immune system was strong. I gave him Gummy Vitamins and Emergen-C; he would kick it on his own.

When you live with someone, you stop noticing things. But when we had my family over for dinner, or his friends gave him sideways glances during movies, we realized how often Hayden snucked. Thirty, forty, fifty times an hour. My husband worried he would be teased. We offered steam showers, tissues, Claritin and bribes of $5 at the end of every day if I only heard him five times. Hayden wasn’t bothered by it. He insisted blowing made no difference; it couldn’t come out that way. Anyway, he said all his hockey teammates were sniffling.

“It’s winter, mom!”

My husband travels out of the country frequently for work.  Last weekend, after Skyping with the kids, he asked if Hayden had been hit in the face or broken his nose?

"It looks swollen."

I said I had just noticed the same thing, a swelling, but only on the left side. I called Hayden over, pinching the phone between my shoulder and ear. It didn’t hurt him when I touched it--the swelling was spongy under the pressure of my fingertips. Hayden couldn’t recall any injury.

 

That night, I woke up with a start. In the dark, I rolled over and scribbled on my bedside journal – Hayden, snuffling, swelling, mass, DOCTOR!

 

I felt sick to my stomach when I read it the next morning. Worse, that prickling all over my neck was hives. Anxiety, the pinpricks of my hackles; my momstinct had been activated.

At first I ignored it. Hayden was healthy--look, there he was pestering his little brother and feeding his breakfast crusts to the dog! Crisis-mongering runs in my family; I didn't want to be some panicked Chicken Little. But something deeper shoved to the surface growling, "No sky's falling on my fucking watch!" I picked up the phone.

I called the ENT who had seen him in the summer. Even with a description of the symptoms to the nurse, they were swamped and couldn’t see him within the month. Throughout the day, I'd be making my kids eggs, or opening the mail and suddenly my guts would liquidate under a squirt of adrenaline.

Something is wrong with my son.

Years ago, I left the message board for parents of children with Hayden’s condition because they were full of doom and gloom—they warned not to get too complacent with kids doing well, urged us to be wary of the Other Shoe Dropping. I didn’t need people feeding that. To this day I can’t drive past the highway exit for the Childrens Hospital without feeling a primitive clutching in my chest, eleven years later. They had my son for the first few months of his life—there is still the totally irrational fear that they will take him back.

For twenty-four hours, I walked in a fog. I could not see Hayden when he recounted to me some plot twist in Hunger Games or begged off his math work; I could only see the bulging alongside his nose, hear the frequency of his sniffing. I whispered my fear to my sister. We were with him every single day. How had we not noticed this? I echoed it with my husband long distance. He is usually good at talking me down, but his mother was diagnosed with the cancer that ultimately took her life when she was younger than we are now. We wanted answers.  

I called his pediatrician and she said to come right in. He had no fever, was typically chatty and sniffly and snucking away and annoyed by my attempts to straighten his unruly hair while he swung his legs on the exam table. She looked in his nose and invited me to do the same. I saw it--a shiny, hot pink bulge of tissue that completely occluded the nostril, pushing out into his face.

 She said it could be his deviated septum, exacerbated by a whopper of a sinus infection. 

“For four months?” I gulped, because spring is just around the corner. I could not believe I had let it go so long. Where was my momstinct then?

“We’ll start with antibiotics, and I’ll call the ENT. A hematoma should have resolved itself since last summer. It should not have gotten bigger. He needs to be seen ASAP.”

All day, I reeled. Is this the beginning of a nightmare? My five-year-old called out ‘Heads or Tails’ while she flipped a quarter on the kitchen counter and suddenly everything carried meaning. I chose Tails, and if I was right, I bargained, Hayden would be fine, a simple sinus infection. The coin came up Heads, three times in a row. A sign? I panicked. Should I trust my momstinct, my waking in the middle of the night, the hives pulsing on my neck? Or was I simply a victim of worrying, because I come from a line of worriers, because my oldest started out his life in the NICU?

Because worrying is the other thing mothers do?

 I struggled not to fall into maudlin musing about the everyday—the little brother curled on the couch, head on Hayden’s shoulder while they played Minecraft, a photo from a friend of Haybes celebrating his first hockey hat trick. Would these moments be filed away under Before in a schism of diagnosis?

At the end of the day, Hayden’s pediatrician called while he was out skateboarding in the driveway with friends, the picture of health in the golden late afternoon light. She had spoken to the ENT.

They want me to watch carefully for the next two days, to take photos of his face. They want to know if the swelling responds to 48 hours of antibiotics. If not, the ENT will schedule an emergency appointment with Hayden, and it will not be because of a sinus infection or a deviated septum.

So I wait and wonder, swinging wildly between Everything is fine! to Disaster is upon us! I try in vain to take my pulse, to find out deep down how I feel. Do I scratch the hives on my neck and sink glumly into my faith in mother’s intuition, or cling to my general Pollyanna optimism?

 

Can a mother’s instinct, tainted by a mother’s inherent worry, be wrong?

 

* *** *