This Hero’s Heart

Mom. For today. Is Joey’s birthday.

Yes, Jack, it is.

Eighteen. He is eighteen.

Hi.

My name is Carrie. I have five kids and my second son has autism. His name is Jack.

You can ask any mother what time her baby was born, and she will tell you down to the minute. 

You can ask any mother if she thinks she is a good mother, and she will hesitate. 

What makes a good mother?

I have no idea.

I mean, I am the kind of mother who loses her mind over cereal bowls in the sink but I don’t get too worked up about grades.

I have been caught throwing their artwork in the waste basket, but every year I write them a letter in a small leather journal.

It would be helpful if there was some kind of metric to measure our goodness—something reducible and exact. 

For example, I birthed over forty-five pounds of people. I have cooked 8,392 meals and changed approximately a zillion diapers.

I’ve done hundreds upon hundreds loads of laundry.

I’ve wiped salty tears, and pressed my lips against warm foreheads, and pulled freshly blown candles out of birthday cakes. 

But I’ve also criticized, nagged, shrieked, and let them watch PG-13 movies when they were only twelve.

I am trying to teach them to put their bowls in the dishwasher and at the very same time I admire the curve of their face. I remember when they were toddlers, and I feel my heart shift in an imperceptible way.

How do we teach them and love them all at the same time? It feels impossible. 

Joey wants his birthday dinner. Outside. With his friends.

I know! It will be fun.

Autism is the ultimate curveball in the game of motherhood. 

It has changed everything I once thought I knew about myself. 

I thought I was a person who usually had the answer, and I could figure it out pretty easily if I didn’t.

I thought I had deep reservoirs of patience, and fortitude, and courage.

It turns out I possess very little of these things, especially the patience part. 

When it comes to autism, I am wholly and wholeheartedly interested in the words of the weak turned brave—those who have reached their fingers toward the fire, and withstood the burn. 

I have done this, you know. I have felt the flame. But still I can’t shake myself of the pain.

I hurt for him, my special son. 

I hurt for a loss that is no longer my own.

Sure, in the beginning I thought the loss was all mine. I claimed it the way you might claim the first strawberry of the season, or a winning lottery ticket. I reached out with both hands and clasped it to my chest. 

I gnashed my teeth and fretted because he didn’t speak in sentences and he never looked in my eyes.

I mourned a sense normalcy, and a life I once expected.

But I am over all of that. 

Mostly.

In hindsight, that was nothing—the proverbial drop in the bucket—compared to the sense of loss he confronts every single day.

See, in my race to hog all of the grief, I forgot about the boy.

The boy whose hands I gently move away from his face so he doesn’t chew his cuticles until they bleed. 

The boy who needs medicine to slow his anxious mind and quiet his racing spirit. 

The boy who delights in his older brother’s birthday as he would his own. 

I will grill. The burgers. 

As hard as I try, I cannot capture Jack’s earnestness on the page or in conversation. 

I can’t seem to express all the ways in which he defies the spectrum disorder’s expectations.

Or how, again and again, I have to wound his hero’s heart in the name of progress, or safety.

Jack, maybe you should wait for Daddy to help you.

Autism makes me feel trapped, and alive, and breathless, and ordinary. 

I cry big fat tears in the drive-through pharmacy.

I wake at night while the street sleeps. 

I have watched him. I know how to do it. 

Buddy, are you sure? 

When it comes to autism, there are no shortcuts. I resent this more than you can know. In fact, it makes me downright angry. 

But it is the truth—there is no faster way to get from point A to point B. You simply have to put one foot in front of the other and walk.

The only way to heal/grow/try is to do the very hard work of self-discovery, reflection and—the very worst of them all—humility. 

I am trying to heal.

I am trying to grow.

I am trying. 

I am trying to raise a family and forget about the cereal bowls. 

I am trying to hold on to the memory of their toddler faces while I watch their teenage silhouettes move through the room. 

I am trying to expand the parenthesis that restrict my complicated son.

It is the hardest work I have ever known.

Most of all, I am simply trying to follow their lead.

Please. Believe in me. I can do this.