When I Wanted a Magic Nursery Holiday Baby To Magically Take Away My Surgery

2,690 words

21 minute read

TW: medical trauma, surgery, anesthesia details, dissociation.  Everything, basically.  Read with caution.

Christmas Day of 1991 is fuzzy.

I have exactly one memory of the day.  I wanted a Magic Nursery Holiday Baby.  They were dolls and you apparently did not know their gender until you swished a little 'surprise package' in water, which revealed if your doll was a girl or boy.

The holiday version of the baby was even more magical.  With the tagline, "Love is magic" and listening to commercials that talked about the dolls in the same breath as "all your holiday wishes coming true" I knew I needed that doll.

The holiday version of the dolls were especially cute.  I never cared about knowing if I was going to get a boy or a girl doll - whatever I got, I would love - but I was sure I wouldn't get it.

It was too amazing.  Too big a thing to ever dream or hope for.  (Plus, definitely geared for a child younger than the ten-and-a-half-year-old that I was.)  

Here's the thing:

I got it.

Christmas morning, 1991, I opened a gift and found Holly.  My very own Magic Nursery Holiday Baby!  She was adorable.  Exactly what I wanted.  But my heart fell.

In two days, I was scheduled to have the majorest of major surgeries for my Cerebral Palsy...and I'd been secretly hoping...with the last of my childhood innocence...that if I got a Magic Nursery Holiday Baby - if love really was magic and all my wishes would come true - then maybe I wouldn't have to have surgery after all.

But I knew, even opening it, that the surgery was happening.  My parents were planning for it.  Tara and I were deciding which stuffed animals or dolls we wanted to take.

I decided pretty immediately not to take baby Holly.  I think I didn't want to risk losing her, or anything happening to her at the hospital.  She was so new.  So special.  So, I took Tyler instead, a baby doll I'd found on a shopping trip with my grandma.  

On December 27th, 1991, Tara and I woke at 5 AM.  As a fifth grader, who had rarely gotten out of bed before 7:00 AM, this was brutal.  It was still dark out.  It felt like the middle of the night and it was cold.  I slept in the car, all the while anxious about what was coming, but not at all knowing what to expect.

We arrived at the local Children's Hospital two hours later.  There was a lot of waiting.  I was still so tired, not even sure this was really happening, or why.  I was confused.  My legs felt fine.  They felt completely normal.  Why was this happening?  All we had been told was that this surgery would help us walk better.

Better than what, though?  I knew, even at ten years old, that I would always have CP.  I knew that no surgery I ever had would take it away.  

I have vague memories of being with...and then without Tara.  I would be operated on first.  I spent time in a small pre-op type room, with a TV, distracting myself with Teenage Mutant Ninja Turtles - the only thing on so early on that Friday morning.

Then, suddenly, it was time to go.  My parents said goodbye to me but I barely heard them.  I had launched myself fully into my coping mechanism of the moment.

The movie Sister Act. Tara and I had seen it in theaters right before we turned ten with our grandma.  The movie was a revelation.  We loved the music.  The songs.  The choral singing.  The harmonies.  The shy nun, Mary Robert, who finds her confidence singing with the choir, and the choir director who helps welcome in all the outcasts by modernizing the music to "get some butts in the seats."

--

"Have you ever seen Sister Act?  It's really good.  It's a movie.  It's about this one lady, Delores, who has to pretend to be a nun and she's actually really good at music so she becomes choir director and turns the horrible choir into a great choir.  My favorite character is Mary Robert.  She's really shy but she got less shy and started singing.  My sister used to be really shy but she got less shy and now she talks all the time.  My favorite song - well - I don't know what it's called...  It's Latin, or something.  But it's the first song they sing together as a choir when Sister Mary Clarence, that's Delores's nun name, directs.  We watched it nine times!  Once in the theater, once another time.  And then, last weekend, we rented it with our best friend and we watched it SEVEN times!  Can you believe it?"

The anesthesiologist interrupts my monologue about everything Sister Act to inform me that I'm about to smell orange coming from the mask.  I've had enough surgeries (at least three in conscious memory) to know that the smell they say is in the mask is barely there.

What is there is gas - not haha, funny gas that you laugh at when you're ten - but real actual gas.  Noxious fumes that invade and suffocate you until you pass out.

This is what I have been dreading; avoiding.  Gone are the plans I have to count backward from ten, to see how far I get, so Tara and I can compare notes.

I panic.

I try to hold my breath, but I can't.

It feels like I'm being poisoned.

My body goes numb slowly.  I can't breathe.  I'm dying.

--

I blink.

I hear, "You're all done."

And I think, "What?  I just closed my eyes two seconds ago?" (like Mary Clarence when Mary Robert comes to wake her up at 5 AM.)

I'm aware of pain.  A lot of it.  But it's muffled under layers of painkillers.  

I feel dissociated.  Out of it.  The first time I'm transferred from one bed to another, I don't know if I even voice my fear out loud.  All I know is that I hurt worse than ever and I'm in the air with blankets under me, strangers moving me.  (Every movement at all is excruciating.)

Finally, I see my parents.

Just in time to groggily hold one hand in front of my face.  It looks huge.  Am I that swollen?  Have I always had giant hands? Why did no one ever tell me I had giant hands?

That's the last thought I have before I vomit.  Everywhere.  

"Tonia blew chunks!" 

I hear the laughter nearby and can only feel relief that I'm not in trouble.

--

I don't remember much else of those early days.  There was a lot of sleeping.  A lot of muscle spasms brought on by laughter, so we were constantly begging that no one say anything funny.  The idea of anyone telling me a joke made me want to sob.  Sometimes, there was no joke at all, and the muscles in both legs would just start shaking fast and hard.  There was no stopping it, except when nurses would administer something through IV.

Every two hours we had to be turned from our backs to our sides.  Movement was so unspeakably painful.  Being re-positioned even in the gentlest way possible in the earliest days is something I have blocked out completely. According to Tara's memory, we screamed and cried.  By the time I have coherent memory of this, I just endured it as best I could.

The two rays of light in the week we stayed at the hospital were our night nurses.  Jeanne and Esme.  Esme was my nurse.  They were young, twenty-somethings probably and used to write funny messages on the white boards above our beds.  (Where most doctors would write what we're allergic to, and other important notes, Esme would write, "I'm a twin!" on my board, while Jeanne wrote, "My sister looks exactly like me!" on Tara's.)  They would joke about having pizza parties when our parents had to go home for the night, and they always lifted our spirits, no matter the pain we were in.

Mom came each day around 6 AM to watch cartoons with Tara in the dark while they waited for me to wake up.  By the time I was awake, the TV lineup was full of Lambchops and Captain Kangaroo. PBS was the only kid-friendly channel we got on our tiny black and white TVs.  Our aunt and uncle visited once, and even our teachers came with balloons and well-wishes.  To be honest, I was on so much pain medication, I barely remember this, just vague impressions.

Physical therapy was particularly awful, and I didn't even mind when I was given a toy that might occupy a toddler to attempt to occupy me through the painful range of motion exercises.  The first time I stood up (with the help of parallel bars) I almost passed out.  All the blood rushed from my head.  It was all I could do just to stay standing.

We were encouraged to go out into the playroom, but at ten-and-a-half I felt I was too old for it.  When it was finally insisted upon, I found myself even more let down, as I realized it was widely inaccessible and I'd have to exhaust myself to reach any of the toys anyway.

We had to stay in the hospital New Year's Eve, and this really upset Tara, especially when our parents left for the night.  I was happy because it was Tuesday night and I got to watch Rescue 911.  Luckily, Jeanne was around to take Tara to go see the fish to help her feel better.

One of the last days, we had to get Tegaderm removed from our scars.  This was, perhaps, the way I first learned all the places I had incisions.  I'm sure I hadn't been told beforehand.  I had four (both ankles and the outsides of both feet) under my casts.  The other nine incisions were covered in Tegaderm which was like having a piece of plastic glued to a major wound.  They needed to take the plastic off before we could go home.

Esme and Jeanne tried to make it fun - but there wasn't much that could be done about it.  Esme kept telling me we could race: "We can beat Jeanne and Tara!  I know we can!"  But it was unspeakably painful.  Tegaderm was slowly unglued from behind both knees, from both quads, the length of both hips, both sides of my pelvis and my right lower back.  Underneath each place was a fresh, raw incision.  (I was particularly angry about the one on my back because literally nothing had been wrong there, but now, I had a deeply painful wound where a bone graft had been taken.)  I thought it made no sense.  The Tegaderm Races of 1992 commenced.  I don't remember who won.  Tara and I were both crying too much.

On our last day or so, I remember being told they had to pull my catheter.  I didn't even know I had one.  Or what one was.  All I knew was that ever since I woke up from surgery, I could just...pee...and not worry about where it went.

When it was explained to me, I was terrified.  But Esme assured me it would only hurt for a second.  Even though we'd only known each other less than a week, I felt I could trust her.  It hurt...but it was like she said.  Only for a second.

We came home, and that recovery took months.  Therapy every single day, (twice a day?  I'm not sure) early on.  Our great grandma made us liver, onions and cabbage and insisted we eat it, because we needed iron.  I still have never tasted anything as texturally offensive as liver onions and cooked cabbage.

Otherwise, we passed time watching Zoobilee Zoo in the mornings and Beverly Hills, 90210 in the evenings. (Great grandma disapproved of the evening program choice.  I still recall her walking from our bedroom into the living room to let Mom know we were "watching a show about condoms!" but Mom insisted she was "glad we were learning about it somewhere."  Representation matters, I guess?)

[Just home from the hospital.  January, 1992.  Four of my 13 total incisions from this "single surgery" are visible.]

Our teachers came to teach us at home.  They even videotaped an early visit (about two weeks post-op) so that our classmates could see us and we could stay connected to them, in the era before social media.  When my (favorite) teacher, Mrs. Johnson, starts inquiring about the type of surgery we had, our confusion and frustration are evident:

MJ: You have one cast and Tonia has two.  How come?  Can you tell us?  What kind of surgery did they do?

Tara: Well...  Um...

Me:  We don't really know.

MJ: Oh.  You're not sure.  It's too scientific?

Tara: Yeah!

Me: Yeah, they use these big words we can barely understand at all!  And mine [notes on surgery] is all in messy printing so you can barely read a word!

[Tara holds out her notes to share with Mrs. Johnson.]  

MJ:  Oh...  I can see why...you don't know what happened...

[Mrs. Johnson struggles to read notes full of medical jargon on what was done in Tara's surgery.  Then, Mrs. Johnson does her best to explain what she does know, giving an on-the-spot vocabulary lesson on what "immobilizer" means.]

Our teachers coming over was a rare bright spot.  We didn't like homework, but I loved Mrs. Johnson, and getting to see her for two hours every day was good for my spirit.  I struggled to list any fun things I had done when Mrs. Johnson put me on the spot.  In fact, I said, "Homework," and had to be specifically prodded to give a general response about "playing games" and listing which friends came to visit.

If you watch the video of our teacher's visit (around January 10th) you'll see a subsequent one beneath it (taken four weeks later). In it, I get reprimanded as I am using all my strength to try and walk with my walker.  Told that if I didn't straighten out, the surgery wouldn't do me any good at all.  It would be like I hadn't had it.  This type of pressure (to do therapy "right" or we would need even more surgery) was immense and crushing.  The threats and comments of this nature persisted until high school.

Back in fifth grade, though, I had to somehow deal with getting cards from classmates who enthusiastically shared with me: "I can't wait until you can walk just like everyone else!"

I remember grimly thinking, "Well, I guess they're all going to be really disappointed."

Why am I sharing all this?

Because today is December 27th.  It's been almost three decades since I naively went into an operating room, not knowing why I was having surgery in the first place.  I wasn't in any pain.  CP wasn't impacting my quality of life.

But here, have the equivalent of 15 surgeries in eleven months.  

You'll walk better.  

(Because another surgery followed in early November, 1992, to remove the "rod" and "three screws" that had been in each hip.  We were now just eleven years old.  Is it any wonder that, at twelve, when I was asked by a doctor if I wanted a subsequent surgery - the first time I'd ever been asked if I consented - I said no?)

Ironically, after all my wishing and hoping for my very own Magic Nursery Holiday Baby?  And getting her?  I could not bring myself to play with her once I got home from the hospital after that horrendous surgery I hoped Holly would save me from.  I enjoyed her for exactly one day.  Then, I left her at home, not wanting to lose her.  Not wanting anything to happen to her.

But I lost something greater.

That last bit of childhood innocence - that left, too.

Nothing happened to Holly.

But everything - all of it - happened to me.

***

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