that year the universe did not have my back.

2019 was a monster year for the Horst Family.  And by monster, I don't mean we crushed it.  I mean 2019 crushed us.

Kicked it off with a 200 mile road trip to Shriner's Hospital in early January, which we thought would help us get to the bottom of why our 18 month old wasn't walking yet.  With 3 small kids, this felt like a borderline DATE.  Three car seats lined up and only ONE child in tow.  This was going to be our shining chance--to finish a conversation for the first time in half a decade.  Pitiful as it sounds, I packed twizzlers and everything.  

I was obviously anxious to get some answers from one of the top surgeon's at one of the top orthopedic children's hospitals in the country, but was also embarrassingly giddy about a car ride that did not involve constant bickering and blows to my low back with those deceptively fierce rubber toed keens. 

 

What happened was, I noticed changing my daughter's diaper over the holidays that one leg was freakishly longer than the other.  I felt as though, after roughly one thousand friends and relatives asking me, "is she walking yet?", I had found the missing puzzle piece.  What with one leg longer than the other, this had to make something as symmetrical as walking pretty tricky, right?  To which, the head honcho doctor at the head honcho hospital basically shrugged his shoulders and said, "development happens when development happens."  We took an x-ray of her legs anyway.  It was true.  Her tibia and femur in the one leg were about a centimeter longer than the tibia and femur in the other leg.  To which he also shrugged his shoulders.... said sometimes bones just grow like that, "taking turns."  Phew. 

Errrrr wait.  In the final minute of our appointment, the doctor hesitated, then pulled his resident aside and they did this whispery thing which, sitting in one of the greatest children's hospitals in the world, was a tad concerning for me.  The doctor went on to suggest we get an ultrasound on her abdomen because in taking another gander, found one leg to be slightly thicker than the other...  "and sometimes this can cause tummy trouble", then sent us on our way.

what the.

Now I obviously did not attend medical school, and therefore am missing plot points...   but what does her STOMACH have to do with her LEGS?, I bark at my husband as we get escorted down the hall by a nurse because our time with the doctor was up.  

"no idea.”

The nurse interrupted the tension by telling us the doctor would like to see us back "in another year or two.  or three.  depending on how things go.", then pressed the elevator button for us like a boss.

Before I got to say, "Wait.  What?  Depending on how WHAT goes?", the elevator doors closed on her, a nurse with a tight pony and a plastic smile. She was holding a clipboard with one hand and waving fanatically at us with the other.  I got the feeling she wasn't even a nurse anymore.  She was more like an amusement park worker who just strapped us into the bright orange bucket seat of the Steamin' Demon and like it or not, the ride was in motion.  Good Luck, kids!

We are silent on the way down.  I'm toggling between feeling like a total moron and wanting to throttle that nurse.  My confusion cannot be measured.  My husband, meanwhile, is wondering if there is a Chipotle around here.  

While Tim fetches the car and a squirmy 18 month old humps my right hip, I pull out my phone and look up the word preceded by a question mark on the piece of scrap the frighteningly happy nurse handed me a very blurry moment or two ago.  In what has to be the world's worst handwriting, I eventually make out the word, 'hemi-hypotrophy', with the handy assistance of google.  The irony is not lost on me in that I am reading about a potential condition my daughter has on the Shriner's website, while standing in the Shriner's Hospital main lobby.  

Tim pulls our Honda CR-V under the awning and suggests we get our burritos to-go. 

I go apeshit.  Because in the 3 minutes I've seen my husband last, I've devoured a synopsis of my daughter's suggested condition that comes with an "increased risk of childhood cancer."  

"Tumors, Tim.  The reason we have to get an ultrasound on her abdomen is because they are looking for tumors." 

We meet my sister on the interstate to pick up our other two children:  a 3 year old and Kindergartener.  They had a ball with their cousins all day.  My sister asks how it went.  I fumble around for words. I try to talk about cells on one side of her body possibly multiplying faster than the other side, but this makes no sense to either of us. Eventually, I spit out the truth:  

“I don't know.”

I think this is going to be the year I get back on my feet after having 3 babies in 5 years.  I plan to tend to my business again.  Clean up my website.  Start teaching early bird yoga again. and Thirsty Thursday cooking classes.  Sync my blog. Email campaigns.  Social media advertising.  Get pants that fit. All the things.  Plus I'm scheming a food delivery service for new moms.  And I figure I can get it all done with one in Kindergarten, one painting at preschool between 12pm and 3pm, and the other one napping.  A few mom friends point out these are pretty lofty goals for a mom with 3 little kids and no nanny that they can see. 

Psht.  I got this, I say.  I just won't shower.  or clean my toilet.  or have a nice garden.  I sooooo got this.  

Instead, I spend the entire year chasing down NON.STOP doctor appointments.  

You know how your hands start to shake after you’ve had too much coffee? well. those were my new everyday hands. and they went BANANAS every time I walked into a new doctor’s office.

This is what 2019 did to me. It made me shake from the inside out.

*

My daughter's primary care doctor told me she has never heard of this condition, but agrees that one leg is absolutely abnormally longer than the other, and refers us to a physiatrist.  (For context, one centimeter is the width of your pinky fingernail.  We were looking at more of a 2 inch difference by way of the eyeball--which is somewhat subtle on an adult--but a shit ton on a baby.)  

I've never heard of a physiatrist, but go with it.  I find out this is a doctor of physical medicine and rehabilitation.  I'm a little foggy going into that appointment in the wake of our unnerving trip to Shriner's, but the receptionist checking me tries to offer a little clarity by saying, "Not to worry.  Your little girl is in the BEST.HANDS.  Dr. Buesing was on the front-lines of the Boston Marathon shooting and got those victims up and walking again."  My ridiculous hands pick up the pace. My baby is getting seen by a doctor who specializes in victims who have been...  shot.  severely injured.  nearly killed.  

(Internal dialogue update:  I got this, my ass.)

Turns out, this doctor IS the best.  She plugs in all the missing plot points from our meeting at Shriner's a couple weeks earlier. Leaves no question unanswered except for the ones that can't be:  Is my daughter going to be ok?  Is she growing... crooked?  Will she need a wheelchair? Are we going to need to break one of her legs as an adolescent so that the other one can catch up?  Do you think there are any tumors in her abdomen right NOW? Should we not let her eat freeze pops in case she has cancer cells brewing in her belly... "because you know how sugar feeds cancer...."

The physiatrist doesn't have answers to those questions.  But her candor and steady demeanor make me want to sit in her office all day long with her, maybe pull up some hummus and chips. She is that much of a pleasure.  Her smile is not made of hard plastic. Her smile is sincere. Plus she is profusely pregnant, has checkered Vans on her feet, thinks my child is adorable, and takes my freeze pop question seriously.  Extra points all around.

Next up, the genetic doctor, who asked roughly 70 straight questions about our ancestry, of which I answer a total of 5 with any certainty (ie: "I think I'm mostly... German?  Yeah.  German.  Well, pretty German.  See, we all THOUGHT we were German up until last year when my aunt, who is big into genealogy, found out her grandparents are ACTUALLY from Alsace Lorraine, which is more France-ish..  I think what happened was, my dad told me, the Germans took the territory over after the Franco-German war, but gave it back to France after WWII.  So just put me down for German and French to cover our bases."

The geneticist happily got rid of me.. sent us down the hall to the cranky phlebotomist, whose job it was to take a motherload of blood out of my baby's doughy upper arm, in order to rule out a plethora of terrifying genetic syndromes. What happens next, you sit around chomping through candy canes as if they’re cheese sticks, doing a number on both your teeth and your jaw. (This is how I wait for scary results, anyway.) I resisted the urge to call the genetic doctor every single day until those said two weeks were up. That is, until 8:29am on the 14th day, I dialed in, only to find the genetic doctor is in Europe and so, I’ll have to wait some more. At least that hospital had valet.       

Then there was the fulcrum of doctors, her pediatric orthopedic doctor.  This is the office we get x-rays on her legs, fit her for a cork lift in her left shoe, and pick up scripts for bloodwork and ultrasounds that screen for tumors every 3 months.

Twizzler anyone?

*

Somewhere in those first few months of 2019, we also wedged in a week's stay at the Pediatric Intensive Care Unit because if you can believe it, parading in and out of  a variety of hospitals and doctor offices at the apex of flu season, Norah picked up a respiratory virus that manifested into pneumonia.  For a week in March, my body took on the shape of a candy cane as I bent over a hospital crib wrapped with a 3 foot tall plastic shield.  Inside, lay my 19 month old, tangled in tubes that kept her breathing because her lungs were too pooped to do the work anymore.  

This is the part of my life where I start begging my deceased relatives to keep my baby breathing.  (I don't have the guts to ask God for any favors because after spending the better part of the day in the emergency department, I'm quite certain the Lord is tied up downstairs.)  

During our stay, Norah was visited by respiratory therapists who would suction her back to loosen up the gunk.  Then they would shove a narrow rubber tube up her nose and down throat to suck that gunk out of the bottom of her lungs and zip line it into a small plastic vessel next to her crib that strangely kept me company all week.  I would stare at her wad of piled up gunk whenever I needed a break from chanting numbers at a machine that would spit back facts about her oxygen levels.  

Everyone else that week, it seemed, was in Disney.

Just before we were discharged, a nurse gingerly asked about her leg length discrepancy as I signed the exit forms.  I had forgotten all about that, I told her.  And I had.

*

Hoping for a warm meal, I was greeted home from the PICU, instead, by the proverbial stomach bug.  Taking turns, the Horst family puked until we could puke no more.  Fine by me.  We were HOME.  

A few days after the puke-fest, my husband was still doubled over in pain.  He went to work all week with this on again--off again abdominal pain that me and all my absentee science-y brain cells assumed was residue of the stomach bug.  I think I actually told a friend of mine that Tim had "a leftover stomach bug.”  A cat scan later, which showed inflammation around his intestines, he was taken via ambulance from the local urgent care to a weekend's stay at the hospital, a place I was quite frankly sick of.  At the end of the weekend, doctors still didn't know the origin of his pain, gave him extra strength ibuprofen and sent him home.  I was still rooting for my leftover stomach bug theory when a gastroenterologist called and advised a colonoscopy, which for anyone who has prepped for one of those knows, is a sobering phone call.  All checked out OK--thank God--but this left the doc shaking his head.  That is until the poop people called about a week after THAT and said, "whoops!  sorry about the lag.  turns out, we DID find something gnarly in your poop. you had a parasite and didn't need that colonoscopy after all."  

I rage cleaned all day.  Then spent the following week making my older two--like it or not--poop in a pint sized green froggy potty so I could spoon and shove their shit into tiny test tubes to bring to the local hospital to be tested for giardia, a fairly common parasite.  (because if one family member has it, it's viable the rest do, too.)  I'm suspect of the poop people at this point, but scoop on.  I scooped my youngest's out of her diaper, easy enough.  I labeled each tube with our initials using a black sharpie and masking tape, very sophisticated.  I'm told to store their crap in the fridge overnight until the lab opens in the morning.  Fine.  Right there next to the milk.  We naturally mix up the test tubes marked with an M after someone moves them around reaching for the OJ in the morning.  'M' is for Molly.  'M' is also for mama.  Whoops.  Shit retrieval, take 2.  

To this day, I shudder to recall those goddamn brown test tubes next to the half and half.

*

The first year of my daughter’s life, I tell everyone:  meet Norah!  she is my easiest baby!  After weathering two very colicky babies, she's an actual walk in the park.  I didn’t even know God made them like this! I go on to tell people she is the typical 3rd... "just happy to be here."  My husband and I are both 3rd in line out of 4 kids, so we proudly present her as the low maintenance one. I wear her everywhere I go, tucked in one of those nifty moby wraps as we move from soccer fields to parent teacher conferences.  I even taught a cooking class with her strapped to me one time, shredding kale like it was nothin.  I'm strongly considering a 4th and have the guts to tell people this, with an oxytocin charged smile.  

The second year of my daughter's life, the joke's on me.  It's a year filled with ultrasound wands, needles, and tubes of blood, gunk and actual shit.  Another word for this: humility. I google the nights away looking up scary syndromes and in the morning, go off on health insurance providers who refuse to cover things they don't have a 4-digit code for. Another word for this: fear.  

I start sending my husband to work every day with a peanut butter sandwich--and a dirty look.  The way I saw it, he got to go goof around with 6th graders all day, leaving me to do the dirty work of orchestrating my daughter's team of doctors, not to mention dragging a set of whiny sisters all over creation when they should have been at story time, dammit. At least the physical therapy office had those super-sized exercise balls my older daughter could play with during Norah’s sessions. This place was the highlight of our week because those bouncy bright colored balls resembled something we used to have all the time: fun.

We close out the winter with a vasectomy and a record number of F bombs out of my mouth.

Fuck twizzlers.

*

2019 nearly swallowed me whole and we weren't even half way through it.  This is when my dad, the most energetic, positive, tenacious, can-do man in my universe--a man who refused to let “a little cancer” stop him from smiling...  started to sleep more.  His walk got slower.  His face grew grayer.  His lungs, legs, feet all began to fill with fluid.  The fiendish cancer in his bones, which made for wayward blood cell production.........  was gaining on him. In spite of a grim diagnosis a few yeas prior, I never thought the disease would ever take the lead. And if you knew my dad, you didn’t think it would either. He made impossible things happen his entire life. Ask anyone.

Alas, on August 5th, 2019, in the same family room my siblings and I used to fight over the remote, an earnest home hospice nurse looked my mom in the eye and asked, “is everyone here?”. My trusty trembling hands dialed a couple phone numbers using our kitchen phone. A few hours later, my brother, sisters, and I circled around my dad and told him one by one he could go now. And all I could think of was a line from a Dr. Seuss tale:

“I said, and said, and said those words. I said them. But I lied them.” 

Mercifully, my dad believed my mom when she said them.  And after 46 years of marriage, she put his hand in hers, and we watched my dad do the utmost impossible thing we’ve ever seen him do.

He let go.

*

A few days later, as if on some kind of cruel cosmic cue, my grandmother died.

A few weeks after THAT, my middle child gets what is believed to be a recovering hematoma above her left eye surgically removed. A hematoma, we were told, is basically a bad bruise that never recovers, which made sense to us after recalling that time the butt end of her brother’s hockey stick hit her square in the face. She had a black eye for a few weeks and in it’s wake, was this bluish purply bump that reminded me of those bright pastel candy dots from the 80’s we all used to peel off strips of white paper.

“It’s either that, or a calcium deposit,” thought the pediatric eye specialist. Whatever it is, it’s not believed to be anything serious—-but after 9 months or so of monitoring, it’s also believed it should come out. I sent my husband on this venture because after watching my dad die, I cannot bring myself to watch my 4-year-old go under general anesthesia.  I just can't.  

The surgeon called me a couple days later, surprised by the biopsy.  He said it wasn't the collection of blood, or wad of scar tissue, or pesky calcium deposit he thought it might be.  It was some long word that started with the letter p and ended with -oma. It was, in fact, a tumor.  He followed up this fact by telling me not to worry, that it was benign, and gone now. To which I made him spell it out for me. P.Y.L.O.M.A.T.R.I.X.O.M.A.

The surgeon moved the conversation along by saying he wanted to see her again for a 10 day post-op appointment and suggested a follow up with her pediatric eye specialist doc in 3 months. “I’m sorry”, I said, “can you spell that again?” He was both an expert surgeon AND expert mumbler. I still didn’t catch it. “One more time, please.” The conversation lasted no more than two minutes and ended like this:

“It’s benign, Susan.”

“But it was a tumor, Doctor.”

“But it was benign, Susan.”

“But it was a tumor, Doctor.”

“A benign tumor. Nothing to worry about.”

“Did you just tell me a tumor is nothing to worry about?”

“Yes.”

Click.

I ordered a repeat pathology report to be done by Dana Farber because DOCTORS-WHO-DELIVER-ICKY-NEWS, PAY ATTENTION: mothers worry when their child has a tumor. Or might have a tumor. Or had a tumor.

DOCTORS-WHO-DELIVER-ICKY-NEWS, PAY CLOSER ATTENTION: Never ever shoo a mother out of your office. Or dodge the details. And do not rush that phone call. Pretend we are you, instead—-without the medical degree. (Because we are.)

Albeit benign, perhaps harmless to you, the word ‘tumor’ will always rattle a mother to the core. Especially when this same mother thought about a minute earlier, her toddler had a bad bruise from playing hockey with her brother in the driveway.

A mother always worries.

A mother does not let go.

At least this mother doesn’t. Because this mother now knows.. You can be bending all of your attention on the legitimate fear that a tumor could be brewing in your baby’s belly, while one pops out of your other daughter's face.

*

That same week, I received an email notification from the public library, indicating a request I submitted many months ago was in. Of all books—-The Universe Has Your Back, by Gabrielle Bernstein.

The poor librarian on the other end had to field this reply from me:

“The universe has your back, my ass. Please offer this book to the next person on the wait list.”

*

I'd had it.  No, I'd mother-effin had it.  I went to yoga.  

It was hot.  Not the yoga class itself, just everywhere.  It was the tail end of August and I was sending bitchy emails to sweet old lady librarians and snapping on surgeons who just removed something scary out of my daughter’s face.

The last place I belonged was in public. My mood was a hazard, but anyone whose ever tried home practice with 3 little kids knows—-they will crap their pants. They will smash glass. They will hump you in downdog. They will do whatever it takes for you to roll up your mat and go make them a snack.

This is the main reason I had to GO to yoga. plus my husband made me. He acted as if it would be good for me, but really, we all know he needed a break from my rotten mood.

*

I hated being in public after my dad died.  Because if I tried to talk, I stuttered.  I mixed up pronouns.  I could not articulate a lousy pizza order.  And I could not order a burrito if my life depended on it.  Pinto or black beans? Forget it.

I shook.  I swelled.  I shrunk.  I hallowed.  I fumbled.  I ached.  with grief.  Coherency staged a walkout in everyday conversation and the oppressive heat only made things... well, mushier.

Yoga was the only acceptable place for me at the time.

I walked in and people were mingling, animated and bright.  There was talk of Cape Cod and new bus routes and this one woman in particular who was going on and on about her zinnias.  

I rolled my mat out hoping like hell no one would talk to me.  

The teacher went with a mandala.  

Perfect.  Move me in circles around the mat.  Spin me around.  Make me dizzy.  Help me forget what leg I'm on.  Which way I am going.  What planet I'm on.  I beg you.

I'll pant like a puppy.  I'll stand on my head.  I'll pump my belly in and out like a madwoman.  I'll do whatever you say, lady. Just take it away.  The grief.  The fear.  The tumors.  The test tubes of shit in my fridge.  The year.  

JUST TAKE IT ALL AWAY.

Smack dab in the middle of the mandala, I was getting exactly what I asked for:  mega mayhem.

What leg am I on?

Pull what hip back?

Press what foot away?

Where the? What the?  How the?

This is the part of the practice you are supposed to let go. 

This is also the part of the practice I take it all back.  

I changed my mind!  Pretty lady, just tell me! Tell me exactly what leg I’m on! and what planet this is. and for the love of God, what pose is coming!

For fuck's sake, I’m sick and tired of not knowing what’s coming.  I need answers, dammit!  And if I can't know if my daughter's legs will ever even out or why my dad's bones went to shit, then I at least need to know which end of this lousy rubber mat is the front and which end is the back.

Finally, I flagged the teacher over and told her I had no idea what I was doing.  I pretty much begged her to break it down, slow it down, or at least offer me the JV version.  This was YOGA after all.  I expected her to cut me some slack—-and if I was lucky, suggest I curl up like a cat over there in the corner for the rest of class, with a big bolster and lavender scented eye pillow. Maybe she’d come around later and rub my temples or feet or something.

Instead she crouched down next to me, and with the most compassionate eyes in the world, eyes that reminded me of my dad’s hospice nurse’s eyes, and said:

“sometimes, you just have to keep going, mama. and not know what the hell is going on.”

“just try”, she said, “to keep going without knowing what the hell you’re doing.”

*

I always knew yoga was about the breath.  Any halfway decent yoga studio will teach you that much. 

I also knew to keep the belly soft and available on the inhale, draw the naval up and in on the exhale, and to pick up the pelvic floor if it was in me.  I knew the bandhas gave the poses power and that pranayama, while pesky, was worthwhile.  I knew I could not roll up my mat at any point and leave early for an iced coffee.  I knew to square the hips off in Warrior 1 and 3 and to open them in Warrior 2.  I knew a strap made impossible poses, possible.  And I knew stillness mattered more than nailing those impossible poses.  Heck, I even knew to swap parmesan for nutritional yeast when making pesto and while I was at it, miso paste for garlic.

I knew all SORTS of yoga things.

I was 10 years in and considered myself at this point, a yoga person--and had Patanajli's Yoga Sutra's on my living room shelf to prove it.

The more tidbits I picked up, the more I approached yoga and it's weird ass poses with an "I've got this" mentality.

And it wasn't until this teacher crouched down next to me, a decade into the work, that I realized:  I was doing it all wrong.  All this time.  (Talk about some holy shit.)

*

In savasana that day my husband sent me to yoga, I decided this would be the day I at least.. try.


to unlearn a thing or two. I began with a few old stories that went like this:

Babies are symmetrical and dads live forever.

If I pump my kids with expensive elderberry syrup, they won't get sick.

Tiny tubes of my kid’s shit won't end up in my fridge next to the milk.

And the new story went like this:

I don’t know.

What her stomach has to do with her legs.  

Why my dad's bones crumbled.  

If my hands will ever stop shaking.

How a tumor popped out of her face.

If I'm German or French.

I just don’t know.

*

  

“Sometimes, you just have to keep going, mama.”  

Keep going, mama. As in press on, push harder, take the vinyasa, skip the epidural, eschew conventional dairy, make your own cleaning products. (And if you really give a damn, you’ll volunteer in your kid’s classroom and compost those banana peels.) This much I got. I was a mom of 3 in 2019 for God sakes. Our job, which I had down pat, was to above all else—-keep.going, stopping only to post all your maternal efforts on facebook, unless you’re over 40, then insta-—and in a way that suggests you’re not even tired. Pushing 40? Post on both. (There’s a way to adjust your settings for that.) A modern mother, in other words, is expected to be a total animal.

And I was practically a MASTER at that. (Minus the social media posting. I blow ass at posting about my private life, or coordinating a picture of my baby with my political beliefs, or confessing my love for my husband on his birthday. I just can’t.)

But I can keep going. I can always keep going.

That part was not the kicker. It was the ADDENDUM the teacher tacked on that day that got me. That thing she said AFTER she told me to keep going.

to keep going without knowing what I am doing, or what the hell is going on, or what is coming next.

WHOA.

Any other day. Any other year. I may have not even heard that part.

But on that particular day, after that particular year, I was left no other choice. At the end of my rope, I chose to not give a shit what end of my mat was the front and what end was the back. or if I was on the wrong leg or doing the same side twice. I just kept going. kept moving. without coordination, ease, or way out. there was no symmetry with my neighbor. no order. no keeping up. just keeping on. (and I wasn’t even spewing profanity!)

We had to of looked like a roomful of disobedient synchronized swimmers. doing our own damn thing..

something my baby and her uneven legs came into the world knowing. the same something that took me almost 40 years and a messy mandala to figure out..

eyes closed. big, clumsy movement. and a love that doesn’t hesitate.

“so this is how you let go”, I said to my dad, as I spun around to God knows what end of the mat.

I said, and said, and said those words. I said them.

And he heard them.

Sue Horst