Monday, November 7, 2016

This is Halloween

My Halloween sucked. How was yours?

Around the first day of autumn, when it was still well into the 80s every day and the leaves were still bright green with life, the Halloween decorations started to go up around town. Two-foot spiders climbed up the sides of people's houses. Skeletons dangled from tree branches. Graves adorned lawns. Those awful white polyester messes meant to be spider webs tangled shrubs and bushes everywhere. And Bee demanded that we participate. We will, we will, I kept saying. But we didn't. I'm jealous, she whined. We need lights. Graves. Zombies! We do not need any of those things, I told her, all the while feeling like the Grinch who stole Halloween. I love Halloween. I'm goth! Of course it’s my favorite holiday; it always has been. For me and for lots of my friends, Halloween is every day! 

But when it comes to costumes and makeup and decorations and all that, I am the worst. I have lots of creative ideas that I never have the confidence to try. Growing up, I always ended up being a cheerleader for Halloween even though I was never a cheerleader and I never even knew any cheerleaders. One year when I was about ten I decided I was going to be a calendar. I had a big roll of blank newsprint paper that I cut twelve long sheets from and tied them together. I sketched the months out painstakingly in pencil, one on each sheet. Before getting crazy with markers and color and such, I tried it on like a paperback sandwich board strung from my shoulders and examined myself in the mirror, secretly pleased at my ingenious. But what are you? my friend from upstairs gawked, judging me. She was going to be a cowgirl; her long honey brown braids and splash of freckles made her look like the prototype for Toy Story's Jessie.  Um. A calendar? I said weakly. I swallowed hard as she giggled. For a long time she said nothing, and then: Are you sure you want to be a... calendar? Actually, I wasn’t at all sure. My confidence evaporating, I ripped the draft of my costume off of my shoulders, crumpled it up and threw it into the trash. I borrowed the cowgirl's pom poms and went as a cheerleader. Again.

Every time I try to decorate my living space or put on wild makeup or deck myself out in any way, I am that girl who wanted to be a calendar and ended up a cheerleader. I have friends who are so artistic. So creative. So thoughtful and deliberate. A very androgynous boy I dated years ago drew thin tatters of lace under his eyes with black eyeliner every time he went out. He looked so sexy and somehow it never smudged. If I tried it, I'd look like a clown with two black eyes. One friend of mine collects all kinds of tiny interesting things; her house looks like an alchemy lab. Another friend painted her dining room wall with chalkboard paint and invited her friends to write messages and draw pictures with colorful sidewalk chalk. It looked fantastic. Another, an English lit major turned teacher, piled books from floor to ceiling and I loved her cluttered but cozy professor look. If I tried any of that, it would just look like a big mess.  I have learned the hard way that when it comes to my clothes, makeup, furniture and home decor, I have to keep it really, really simple.

That's what I thought about trying to decorate my house, myself or my children for Halloween. A bunch of money spent to make a huge mess on an entire acre of property? No thanks. I’ll keep it simple. I bought an armful of pumpkins and dumped them on our doorstep. I never even bothered to carve them. A week before Halloween, Rae came home from school with a laminated orange circle in her backpack. It had long, thin black arms and legs stapled to it and it wore a face I could tell she drew herself. I taped it to the front door. And that was it for decorations.

That was the first thing I did wrong.

The second thing I did wrong was not ask families of the wheelchair-and-walker set how they handled this holiday. 

Last year was Rae's first year ringing doorbells. (She didn't mind being called Teeny back then, but she's Rae now.) We were still in New York City; we trick-or-treated in an organized event in our apartment building on the Sunday before Halloween from 3 - 5 pm with all the other kids. We rang only the bells that had paper pumpkins hanging from the doorknobs. Rae was four and dressed as a sparkly black cat in her wheelchair and Bee, then five, equally sparkly, equally black and equally feline, pushed her excitedly from one apartment to the next. It was easy, it was lucrative and it was over in about 45 minutes. Johnny stayed home to distribute lollipops. He wore a creepy mask and blasted Thriller. Back home, we all watched The Nightmare Before Christmas and sang along as we went through our spoils and made a huge pile of everything that wasn't vegan. We'd made a deal before trick-or-treating began: you give me all your candy and I trade you for a super duper present. Bee picked out a fancy dress on Zulily that was black and grey with skulls and spiderwebs. Rae was overjoyed with some plastic food items for her kitchen set. And that was our Halloween in the big city.

Decorations aside, I’d felt ready for this year. I’d gotten the girls' costumes weeks in advance. No thought whatsoever went into this; we spotted Pikachu costumes at TJ Maxx early one morning in September. Newly minted Pok√©mon fans, they were immediately overjoyed and decided on the spot they both wanted to be the same thing again. $40 later, I was happy to be done with costume shopping. We made plans to meet up with friends and their kids in a part of town known for its Halloween decorations. I marveled at photos of other people's children in the pre-game events and noticed all the wheelchair costumes. Some were complicated constructions of trains or castles that I would never in a million years be able to make, but my favorite costume of all was a girl in a power wheelchair wearing an uncomplicated but impressive jellyfish costume (think white outfit, clear plastic umbrella, white streamers, blue Christmas lights). You see, I did lots of thinking about Halloween. But I didn't think enough about Rae. 

She and Bee came home from school on Halloween day all excited to get going. We got them into their costumes, put on their makeup and piled into the car. I hesitated for a second and then got back out of the car and ran upstairs. I plopped Bee's purple wig on my head. I grabbed a pair of butterfly wings that hadn't been used in forever and stuck my arms through the straps that felt tight over my hoodie and vest. I borrowed a wand that someone gave Rae for her birthday and used Bee’s glittery pink lip gloss. Voila, I was a fairy. Without even looking in a mirror, I got back in the car. Before I pulled out of the driveway, I threw the car back into park. What about when people trick or treat us? I ran back into the house and looked around. I found a Sharpie in a drawer and plucked a paper towel roll out of the paper recycling. I flattened it with my hands. We're out trick or treating too! I scribbled. Please take a few, and happy Halloween! I dumped 120 lollipops into a rayon pumpkin and set it on the front step. I taped my tiny sign to the door and raced back to the car. Okay, I breathed. This time I'm really ready. Half an hour later we were deep into conversation and pizza at our friends' house when Rae looked at me in alarm. "Where's my walker?" she demanded. "I want my walker!" 

Fuck. It was at home. I tried to explain to her that we didn't need it, that I would carry her, that she would get so tired trying to run from house to house with the other kids in her walker and she wouldn't be able to carry her bag of candy. She blinked. "I want my walker!" she repeated. Our host tried to be helpful. She offered Rae a stroller. "I want my walker," she repeated. She set her jaw. A wagon. A red plastic car with a handle. A blue electric car. Rae just stared at her. "I said, I want my walker!" 

I drove back to our house and got the fucking walker. I made it back just in time to head out with the others. Rae's face lit up when I came through the door. "My walker!" she exclaimed. And out we went, but I grabbed the baby carrier just in case. 

It was twilight. The houses were lit up and the decorations were wild and spooky. The kids were all bouncing up and down with anticipation. I felt a wave of genuine excitement. Ready everyone? Our host called to the pack of preschoolers and first graders in our group. We're going to hit that yellow house first. That one over there with the bats hanging from the porch. Yep, that one. Ready? Ring the bell when you get there. Set? Say trick or treat and then say thank you! Go! 

Off they went. Within seconds, Rae was left in the dust. "Hurry, hurry!" I urged her, pointing at the yellow house. "Bee is already up there!"

Two houses in and she was sweating and panting and giving up. "I don't want my walker," she announced. She held out her arms. "I want you to carry me," she said. 

Babywearing is not for everyone. I loved it. I had a bunch of different wraps and carriers and I went to classes on various ties and knots. I wore my kids on my chest, on my back, on my hip. I wore them while they slept, while they nursed, while I worked, while I walked, while I danced. I wore them night and day. But wearing a five year old is an entirely different thing. Even if you have a carrier that handles her weight. Even if you loosen the straps as far as they go. It’s just not that easy. Rae’s legs don’t open more than a few inches, so I have to wear her sidesaddle. Picture me carrying a five year old child as though I were carrying my wife over the threshold. She’s strapped to me with her right hip digging into me just left of my navel, her right arm is thrown around my neck, her two legs packed tightly into the carrier, dangling awkwardly at my right side. Because I have yet to find a carrier that naturally accommodates this position, her legs become painful unless I support her with one arm under her knees and the other around her waist. Her head is level with mine. It’s like the longest most awkward and uncomfortable hug and we both love it and hate it. This Halloween, she hated it but she hated not being able to keep up in her walker even more.

For the next fifteen or so houses, I carried all 36 pounds, 37 inches and five years of her bossy little self. She was buckled in tightly, strapped to my chest, urging me on like a little parrot using my exact words from earlier. "Hurry, hurry! Bee is already up there!" she repeated over and over. She banged a fist on my shoulder. I could barely see over her head; every time she turned to look at something, I got a mouthful of hair. Unable to look down, I tripped repeatedly over the littlest of our pack as I went up and down people's front steps in the dark, trying to feel my way and avoid getting her legs caught in railings and fences. Rae was tucked under her costume and inside her coat and strapped into the carrier and snuggled in my arms, so her leg braces were barely visible, her tiny voice barely audible. I stood at people’s doors awkwardly, prompting Rae to say please and thank you and to tell people what she was dressed as to fill the pauses while they pretended to look at their candy dishes, trying to work out why this nearly elementary-school-aged child needed her mother to carry her. In the 25 seconds we shared in their doorways, I could see some semblance of understanding dawn on their faces. They tried to be helpful. They complimented her completely hidden costume. They made small talk. One or two offered me a glass of wine. Mostly they pushed chocolate on me. "Go on, you take some too," they pressed as Rae reached for a piece. "You look like you could use it. Take your pick!" 

Johnny and I took turns at this for about two hours. Other kids in our group began to get tuckered out; one by one they took seats in wagons, strollers, plastic cars. Parents drained the last of the adult beverages they all carried in their red Solo cups as their kids yawned and whined. Thumbs went into mouths. Masks and hats came off and were handed to moms and dads. Coats were pulled close. I sagged under the weight of my bewildered younger child as I struggled to hold the hand of my exhausted older child. Our new, kind friends noticed and offered to help. Want me to carry her for a bit? Here, let me take that bag from you. Can I get you a beer? Bee and Rae clung to me. No thanks, I said again and again. I bit my lip to remind myself that self-pity gets me nowhere. My tired, clumsy fingers pinched her leg accidentally when I took her from Johnny and tried to buckle her back in and she cried out; I just shifted her from one hip to the other for another ten minutes. Johnny tried to help as much as he could but he was spent too, and we both breathed a sigh of relief when our host, now leading us in the pitch black darkness with a headlamp strapped to her head like a level five spelunker, announced that the house with the big inflatable dragons on the lawn would be our last. Well you sure got your steps in today! one sweet mom joked, patting me on the shoulder. I wish they gave me extra points for steps carrying a forty pound bowling ball on one hip! I joked back. 

In the car on the way home, the girls compared the contents of their bags. Bee's was twice as heavy as Rae's. Look how much candy I got, she crowed. I got so much stuff! You know I'm taking it, I reminded her. Remember the trade. I know, she said. It was just fun to get. Besides, we get to have all the leftover lollipops from our house, she said. Oooh I love lollipops, Rae chimed in as I pulled into the driveway and they unbuckled their seat belts. When we discovered the rayon pumpkin, empty and on its side about eight inches from the front step, half a dozen stray lollipops scattered about the stone path leading to our door, the girls cried. Someone stole our lollipops! Why would they do that, Mama? They were so tired that they didn't even wait for an answer, which is good because I didn't have one. I was hurt, insulted, betrayed. This is a nice town. Who would do that? I thought. 

What a terrible Halloween. What could I have done differently? How could I have made this easier for Rae and for me?

Nowadays, Rae uses her walker all day long, but she tires easily and takes lots of breaks. She can’t go far. She doesn’t know how to brake and she has trouble steering, which means she can’t keep herself safe. We are a family of walkers who could make an entire afternoon out of running an errand on foot. Ambling family constitutionals are completely out of the question with Rae. She uses her wheelchair every day, but only to get to and from school. I try to get her to use it more, but she doesn’t see it as an option. “No, in my walker!” she insists when I complain that I want to go for a walk. Her stubbornness feels impermeable and I’ve fallen for it. Like the time I said "Okay, we can leave it home," when we packed for two weeks on the Cape earlier this year. I am still paying for that one in herniated discs in my cervical spine that just won’t quit. But when I insist, that wheelchair really does come in handy. Like the time we spent the day in Central Park doing a fundraising walk for disability awareness. Like the time we went to Disneyland and spent 13 hours going from one ride to another and another. Like anytime we have flown or gone anywhere that I was concerned about crowds, lines, foot traffic, exhaustion or all of the above.

The great thing about wheelchairs is that they are unmissable, their rider’s disability unquestionable. No child uses a wheelchair unless they absolutely must. When people see me pushing my tiny blonde girl in her sparkly pink Zippie, they tend to give us a wide berth. They smile more. They sometimes let us skip lines at important places like Disney and public bathrooms. They don't ask personal questions. They are way more patient with us. Actually getting her into the wheelchair can be a huge victory that makes my life a million times easier… provided that wherever we are headed is accessible, of course.

Unsurprisingly, not a single driveway, porch, walkway or front door that we trick or treated this year was accessible. I didn't actually expect any to be. Not one of the generally delightful, friendly, kid-loving people who answered their doors to find our pack waiting there came down to ground level to meet her, but I'd bet you ten bucks that they would have if she'd been in her wheelchair because they'd have been able to see her from a distance. 

I'm asking for a Halloween do-over.

Next year I promise to try to decorate the house and our property and I promise not to rip it all down in frustration when I think it looks like crap.
Next year I promise to put more effort into their costumes, and my own. 
Next year I promise to find a way to have someone home to give out treats.
Next year I promise to set expectations for their trade-in presents, something I completely forgot to do this year and ended up hastily buying $100 worth of stuff (really cool stuff, but still, just stuff) at Barnes & Noble because I promised I'd have gifts ready to swap for their booty.
Next year I promise not to book a work trip leaving at 8:30 pm Halloween night after putting my overtired kiddos to bed.
Next year I am going to start prepping Rae way in advance about how it's all going to go down so there's no last minute I-want-my-walker tantrum and there's no giving into unrealistic demands because she's ready and I am ready and we are on the same page. 
And I know that next year I will likely as not feel just as uninspired and unprepared as I did this year, so while I'm asking for a do-over, I'm not asking for miracles. I know myself. I'm never going to be creative or crafty and I'm never going to have lots of time on my hands. 

So next year, we are all going to be jellyfish.  



1 comment:

  1. I know I'm almost a year late to this post, but I wanted to say thanks for writing it. I know it must have been painful to relive all of that, but it is so important to hear, see and consider. And I went as a jellyfish two years ago and loved it! Simple, but cute and added benefit I had not thought about, wheelchair friendly! Good luck this Halloween!

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