How I Learned to Choose Joy


Finding my joy was easier as a child. As a teen. Even as a young adult.

The heartbreak of relationships stole that joy. The dream of being a writer that met obstacles like talent and grammar and platform and self-discipline slowly stole that joy.

Or rather, I allowed those things to steal my joy.

Suddenly, finding it became difficult.

I lived most of my adult years from ages 25-35 with a kind of pervasive hopelessness. A kind of non-joy.

I didn’t plan on having children.

I’d babysat all of my life, and I loved the hugs and the songs and the imagination, but I knew myself to be too self-centered and too spoiled to have any kids of my own.

I will never forget the sharp rebuttal from someone I’d dated who said I would be a horrible mother. To my face. I was unflinching. Hard.

Non-joyous.

As much as it hurt, in that moment, he was also right. That would have been a horrible way to mother.

Because children are fragile.

They can become wounded. Hurt. Hard.

When I had my boy, I was mostly in awe. Not happy. In awe.

Finding joy was still difficult.

He was beautiful. Perfect.

But I also had a baby boy who didn’t smile or laugh unless he was tickled or running.

He didn’t smile just seeing my face.

He didn’t giggle when I talked.

He didn’t coo unless I touched his lips.

He didn’t sleep, which means I didn’t sleep.

Until his 4th birthday, he never slept more than 2-3 hours at a time.

It was hard to find my joy.

It was hard to be joyous.

I don’t know exactly when it changed, but I do remember before it did. I was at my lowest.

He was 2 and a half, and he didn’t talk and he screamed for hours on end and he had night terrors and he ate bugs, and I swear his flesh caught fire every time I buckled him in a carseat.

I was back in college. I’d given up writing.

I was majoring in Early Childhood Education.

Because I loved kids, but I had no idea what to do with them. Because years of babysitting had made having kids seem fun, and I was not having fun. Part of me blamed my selfish nature.

The largest part of me thought “This. This is why I shouldn’t have had children. I’m incapable. I’m a horrible mother.”

I enrolled in ECE because I thought someone there could teach me what to do.

And they did.

I found a large part of what I needed to learn in the “Special Kids with Special Needs” course.

Screaming. Biting. Hitting. No cooing. No speaking. No responding to his name. Bolting — oh my God did he bolt. Eating issue. Inability to sit still. Bizarre behaviors. Aggression. Spitting. Lack of ability to play with toys. Lack of eye contact (which, in our case, was not lack of eye contact but actually a screaming banshee if you did make eye contact).

Boy: (screaming)

Me: Quit looking at him! You’re making him scream!

Grandma: I should be able to look at him.

Me: You can’t!

But there it was. In my book.

Suddenly a little bit of the weight of my own inadequacy started to lift.

While I knew I might be grasping for straws, I also knew he was textbook. I could walk down that autism checklist and put a picture of his beautiful little face right next to each marker.

Over the years, my understanding of autism and my boy’s struggles have been a bit of a roller coaster.

Because it isn’t just autism.

It’s ADHD. It’s oppositional defiance. It’s disordered language.

And it’s me. Struggling to find a way to parent him and to find a way to exist with myself.

To find my joy.

Not just in parenting or in advocating for him but in myself.

Maybe a lot of you started off with joy.

Maybe finding your way back was easier.

I’d been without it for so long that it was hard.

But it did come.

In bits and pieces.

As my boy found his voice and as I learned how to communicate with him and as I saw the absolutely heartbreaking beauty in his existence, I began to find joy in so many little moments. My heart began to fill.

I found joy in the quiet moments before he woke in the morning. So I chose to wake before he did no matter how tired I was.

I found joy in his laughter. So I chose to tickle him and chase him more.

I found joy in the peace of prayer. So I chose to pray. Every day. Even if all I could pray was “please.”

I found joy in being strong. So I chose to be strong when I wanted to cry. To be his strength when he had none.

I found joy in being his mom. So I chose to be the best one I could be.

I chose joy.

The rough days are still rough.

But there is a confidence in me that wasn’t there before he arrived.

And while it’s too weighty to put my current, joyful existence on his shoulders, I know he was the reason I began to test my own strength and find my own joy.

If he wasn’t autistic, I don’t know what our lives would be like.

If he hadn’t struggled at a painful level as a toddler, I don’t know that I would have spent hours and hours and hours every day praying for hope and peace and a plan.

If he hadn’t screamed at night, I don’t know that I would have stared up at the ceiling in the dark, rocking him, begging God to help me.

If he hadn’t needed me so much, I don’t know that I would have gotten over myself.

If he hadn’t needed an advocate, I don’t know that anyone else would ever have been more important to me than me.

If he hadn’t been autistic, I don’t know that I would ever have fully, completely and as nakedly turned to God.

And found myself.

And found joy.

So when you read about our lives and I speak from a place of love and forgiveness and joy, I want you to know that it was a hard place to find.

It’s a place I have to root myself every day.

It’s a choice.

It’s a need.

While all these other things are beyond my control and beyond my boy’s control and while life seems unfair or hard or ugly sometimes, I know now what I never understood before:

Joy is a choice.

Maybe one made out of desperation.

But a choice.

And today, like so many days before, I choose joy.

11088758_10153134950338965_3696038780789396761_o

This post originally appeared on Letters From a Spectrum Mom.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

TOPICS
JOIN THE CONVERSATION

Related to Autism Spectrum Disorder

What People Should Know About Labels Like ‘Behavior Issues’

In 1974, my little sister who had cerebral palsy started school. The teacher put stick figure PEC pictures all over her tray covered in I assume some type of clear box tape. This little girl came home and we had the most delightful conversation. She was vocal but not verbal, and through these simple pictures, [...]

When Doctors Predicted My Sister May Be a ‘Vegetable’ Her Entire Life

I remember feeling shocked when my mom first told me the doctors had initially predicted my sister, Anna, may be a “vegetable” her entire life. That’s not her at all. Anna was born 24 years ago with an underdeveloped brain due to unknown causes after a seemingly normal pregnancy. Doctors were unable to determine a diagnosis, [...]

I Used to Feel Negative About Autism Awareness Month. Not Anymore.

Forty years ago, I never saw people with autism in the community. Autism was a taboo topic, and people with it were often institutionalized. Today, people with autism are living in our communities — which are also their communities — and teaching us exactly what they have to share with the world. That’s progress. I’m a believer [...]

Entire Community Came Together to Give Boy With Brain Cancer His Dream Bedroom

Five-year-old John Marandola’s dream of becoming a firefighter just came true. Photo credit Josh Street Design “John John” loves everything to do with firefighters and wants to be one when he grows up. He also has Stage IV anaplastic ganglioglioma, a rare and aggressive form of brain cancer. Last year, doctors said he had just [...]