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Hope lightly, love fiercely

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My name is Carrie.

I have five kids.

My second son, Jack, has autism.

My story is not a new story. It is neither original, nor untold.

My story of autism is, quite simply, an account of a bewildered mother trying to enjoy the moment in front of her, with one eye constantly trained on the future.

For nearly fifteen years, I have done this.


I watched him learn to walk, and then I hoped he would run.

I heard his first word, and I wished for a sentence.

I saw him at kindergarten graduation, and prayed he’d cross that stage again some day.

Lately I’ve been thinking about all the things my son probably won’t do.

He’ll never be the CEO of a corporation, or backpack across Europe, or perform in a play.

He’ll probably never drive a car, or go to the prom, or ask a girl’s hand in marriage.

He won’t cradle his own newborn baby, or teach a toddler the alphabet.

Oh, I have hoped for these things. Trust me when I say I have strapped hope to my back like a bag full of rocks. I have trudged along our uneven path, and shifted beneath its weight until I am sweating and shaking.

All this time, there has been a giant clock ticking away in the back of my mind. See, I only have one chance to raise him—one chance to schedule the best therapies and understand executive functioning and make sure his eye contact improves.

What if I get it wrong?

I am getting it wrong.

I am tired of hoping.

I am tired of hoping for what most mothers and fathers take for granted.

College acceptance letters.

Trophies on the mantel.

A grandchild swaddled in soft linen blankets.

Jack has no trophies.

There will be no grandchild.

I want you to know, for the most part, I stay in my lane. I keep my head down, and I don’t worry a whole lot about what other people are doing. I remind my son to take his medicine, and I gently move his fingers away from the hole he is picking behind his ear, and I file away the latest paperwork in the big blue binder I’ve since he was little.

I say yes, for the eleventy millionth time, we can see Dumbo when it comes out in theaters. I nod my head. Yes, I know it is live-action and made by Disney and it is one hundred and twelve minutes long and that does not include the previews.

Yes. I know, buddy. I know.

In the face of autism, I charge forward daily.

But every once in a while, I look up from my life with this boy and I see what the rest of the world has been doing, and a little piece inside of me dies.

When this happens, I force myself to remember that another person’s gain is not my failure.

Still, I wonder.

What if everyone had to raise a child like Jack?

What if everyone had to adjust their expectations, and redefine success, and consider the running time of the latest Disney movie?

What would the world look like then?

Who knows?

Who cares?

I care.

I am tired of hoping. I am tired of the heaviness.

Over and over, it traps me. It adheres me to goals and objectives that are beginning to feel meaningless.

Don’t get me wrong.

Hope is good.

Goals are good.

Until they are not.

Until one day, you wake up, and hope is the anchor pulling you closer and closer to the bottom of the ocean floor, while your goals mock you from dry land—maddeningly just out of reach.

And all the while you live your life in the shadows of a diagnosis.

I don’t want it any more.

I only have one chance to raise my son.

And I only have one chance to know my son.

I want to do all the things I didn’t do when he was a little boy—I want to experience the small joys I missed because I was too busy scrolling the Internet and making phone calls to specialists and reminding him to look in my eyes.

I was too busy to smooth his hair from his furrowed brow, and hold his furious body against my own until at last, he was calm.

Now, I want to enjoy my son.

I want to laugh when he attempts a joke, and listen to music through his ears.

I want to sit next to him in his favorite diner and dig into a cheeseburger and dip our fries in ketchup.

I want to admire the way he is tentative, and yet the most courageous human being on the planet.

I want to love him the way the sun loves the flowers and the moon lights the snow.

I want to remember he is great.

He is great.

It is time to set down my bag of rocks. While I may visit them from time to time, and admire their pretty color, I can no longer allow them to rule my life. Instead, I will lightly hope for what is possible, and discard the rest.

If hope is a bag of rocks, then my grief is like a box of feathers. When no one is home and I have a quiet moment, I take the box off the shelf. I open it. I cry a little even though I hate to cry.

This time, in the space between my tears, I will grieve for all the things I was sure I could make happen, but now maybe I won’t.

Not because I’ve given up on him. Please, never think that.

I mean, does a wave give up kissing the shore?

Does the sun refuse to spread its warmth?

Or a heart forget to beat?

I haven’t given up on this boy. I fact, I believe in him more than ever.

I’m simply done trying to stuff him into the person I expected him to be. Now, I am trying to be content with the person he is.

I want to think about all the things he can be, instead of the things he won’t.

My son has autism.

His heart is pure.

I hope lightly.

And I love fiercely.

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