What scares you?

What Are You Scared Of?

By Darolyn “Lyn” Jones

When we think of Halloween, we think of cool air, hot toddies, pumpkins, black cats, costumes, bagged big box store candy, ghost stories, scary movies, and haunted houses. The decorations begin selling in stores in August, the movies play on cable television all of October, and the leftover candy is eaten until November.

I loved Halloween as a kid. Read ghost stories and local folklore. Visited cemeteries and bridges and walked haunted trails. Delighted in watching newly released horror movies at the mall. My husband joined me in my favorite holiday by decorating our home, trick or treating by exchanging cocktails with our neighbors, and dressing up for parties.

I sometimes felt silly as a non-parenting adult regarding my enthusiasm for Halloween. Truth is, I hadn’t really ever grown out of my excitement. I still wanted to buy a costume. I still wanted to be scared. I still wanted to eat candy until I was sick to my stomach.

When we became pregnant, I realized that I could do all of those things again, but with no guilt. I recall my husband and I talking about the holiday with a tone of seriousness. How would we carve the pumpkins differently? At what age, should we let him watch It’s the Great Pumpkin Charlie Brown? How much candy would we allow him to eat? My mother said only five pieces before bed and then would parcel it out over the next few weeks. Jim’s mom let him have the whole bag. Would we buy store bought costumes or make them? These conversations are what I should have felt silly about.

After experiencing our own emergency room death of our son, I stopped watching horror movies. The extreme fear and pain cinematically displayed seemed too real to me now. I had experienced the desperation of driving, feeling chased by the minutes my baby had left in utero, the fear of being alone as my husband was in the military and gone on mission, the panic of screams and scurry from the medical staff around and above me, the feeling of the knife coming down too quickly before the gas took effect in an effort to cut out my baby.

Will was born in May, and I tried to get into the spirit by October. Summer was a nightmare and maybe this fall, this Halloween would be a chance to feel like a “normal” family. So, I put out decorations. I bought candy. We planned on taking Will trick or treating in his specialized stroller. For this first family holiday, my mother-in-law even made a beautiful pumpkin costume.

But, he got sick. He was sick for most of the first two years of his life, but there were those few weeks in between where he would be better. I was just hoping we could have this; I could have this.

So, instead of taking him out, we dressed him up and took him over to a friend’s house nearby, so someone could see him in costume. He threw up down the front of the wool and felt costume, and we brought him home. I turned out the lights and ate the candy.

As the years went by, we would continue to make or buy Will costumes and try to take him trick or treating. But even when he wasn’t sick, he didn’t tolerate it. He doesn’t eat, so candy wasn’t a motivator. All he saw was the dark night sky, the faceless masked children, the swarm of adults hovering over his wheelchair, invading his space, the constant ringing of the door bell and shouts of “trick or treat.”

And finding a costume of something he recognizes and loves that is his size was challenging. Hard to find a boy’s size medium Elmo when Star Wars is what he is supposed to want to watch. And the costumes weren’t designed for spastic arms and legs, and they were usually itchy and hot. After 15 minutes of wrangling him in, he pulled and yanked at it, crying for us to take it off. He usually only had it on long enough for a quick picture.

Will dressed up like Blue from Blue's Clues signing the word "more" because he wants to keep moving and not stop to trick or treat for candy.

Will dressed up like Blue from Blue’s Clues signing the word “more” because he wants to keep moving and not stop to trick or treat for candy.

But, I haven’t given up. I want him to be known, loved, and included. Will has taught me to consider and collaborate with him on constructing a new normal. So I buy or create a comfortable and simple costume with no mask. He stays at home. We sit by the door, he in his wheelchair and me and on the bench. We leave the door open (no door bell) and bundle up if it’s cold. And he helps me hand out candy. He is Dyspraxic, so he loves picking up and dropping and while we shouldn’t encourage this lack of motor planning, it’s an asset on Halloween. Some kids get a lot of candy and some get none. But he is in charge. And somehow the repetitive act of handing out candy trumps his sensory impulse of worrying about the masks at the door.

And we invite our friends and neighbors who come inside for an adult libation. A few even bring over small toys or stickers for Will, as they know he doesn’t eat candy, so he still gets a special treat bag.

And I will even watch a scary movie or two after Will has gone to bed. The movies don’t scare me anymore. My real fears lie with the future. Will he live? If he lives, will he live in pain? Financially, physically, emotionally, will we be able to take care of him? Will we be able to outlive him, so we can take care of him?

As with everything when you are a special needs mom, we have learned to persevere, to celebrate differently, to rethink ritual, routines, and even dreams.

I would love for you to post your Halloween story with your child or what you are scared of.

***

About the Author

  Darolyn “Lyn” Jones is a mom to a son with a disability, a wife, a teacher, a writer, a sister friend, and a social activist. She is an Assistant Professor in the Department of English at Ball State University and the Education Outreach Director of the Indiana Writers Center, where she has facilitated several urban outreach writing programs, including Girls in Prison Speak, Sitting at the Feet of our Elders, Building a Rainbow, Recording War Memories, CityWrite, and Special Needs Moms Write. Lyn is passionate about literacy and has devoted her personal and professional life to teaching and writing with writers both in and out of the classroom. Check out her website, publications, and blog at http://www.darolynlynjones.com/.

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2 thoughts on “What scares you?

  1. Nicely written. As a mom who cares for a child with different and often more demanding needs our lives aren’t worse for it, but different. Sometimes we are lucky to embrace pieces of it and sometimes we struggle to fit it in the box we had waiting for it. Thank you for sharing!

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