What it Stole From Us

I stand in the shower and let the scalding hot water burn my skin.

The first quiet moments of day. I take a deep breath. And let it out slowly.

I give myself the grace to feel and think about what it stole from us.

The grace every parent should give themselves every now and then.

Of course we shouldn’t dwell there. But it’s okay to visit now and then when it is warranted.

Especially on days like Christmas. And birthdays. And other milestones.

As the water burns my back, I wonder if Jamie is downstairs thinking the same thoughts.

Eight years in and I am still in shock sometimes at how isolated autism can make me feel. From my friends. Family. And even my own husband.

I know they must feel the same things too. They must.

When Cooper is screaming in the middle of the room, hitting himself in the face, because someone asked him a simple question. The screaming so loud that we can’t think except to wonder when it is going to end. Everyone looking to me to fix it. To jump in. To make it stop.

Only sometimes, I don’t know how to fix it. I don’t know what to do. The pressure building.

They have to wonder about what it stole from us. Right?

Today is Christmas Day.

I think about my beautiful children downstairs. And our morning so far.

One little boy, five years old, levitating with joy over his presents. Hugs and thank you’s. So many questions. So much excitement.

Nonstop chatter. Ripping through boxes. ‘How did Santa know I wanted this?!’ ‘And this!’

And the little boy, eight years old, who still doesn’t quite understand. He knows he is supposed to open presents. Only he doesn’t seem to care about what’s inside.

Or have the patience to really open them.

He opens a few and then wanders off to hide behind the couch. To watch his iPad. And hoard his photos.

He pushes them under the couch. In and out. In and out.

No words. No excitement. No acknowledgment of this special day.

The five year old is playing Battle Bots and Bey Blades. The newest, coolest toys.

Ripping open LEGO packages. Reading the note Santa left. Jumping with joy at the crumbs leftover from the cookies we made the night before. Just the two of us. Always just the two of us.

Making plans for the day. Showing his 10 week old brother every gift. Making plans to teach him how to Rollerblade.

And the other little boy screaming for me to draw his trains. Over and over and over again.

Hitting himself when I don’t move quickly enough. So much screaming. The stress of the day too much already and it’s only 8 AM.

Jamie and I exchanging glances saying…’how are we going to make it through this day?’

The five year old asking for cinnamon rolls. And where we are going for Christmas dinner.

We talk about going to church as a family. Minus Cooper. And how that makes mommy so sad.

In the next second he is practically beaming over the beautiful gift he gave me. He picked out a special sweater for me. He gave it to me and jumped up and down with pride. His older brother had no idea. He’s never made anything for me. Or given me anything.

I stand in the shower, turning the water up hotter, and let the tears finally hit my cheeks.

And I let the feelings of what it stole from us fully engulf me.

The blissful, happy moments. The calm moments.

I let myself envision what life should be like.

I have two boys, two years apart. They should be playing. They should be laughing together.

This should be so different. If only it hadn’t chosen us.

My family. My boy.

We should be visiting Santa as a family. And sledding in the backyard together.

The list of things we should be doing always way longer than the things we actually do together.

Most days I swear I’ve won the lottery. And I mean that.

I have the most amazing child. He is smart and beautiful and healthy. But most of all I have him in my life to love. I get to watch him grow. Because trust me when I say, not every parent is given that blessing.

But some days, when my son is screaming and hitting himself in the side of the face, as he stands in the center of my living room with family gathered around the tree, I feel angry. I feel robbed.

I have the pity party as my friends call it.

And I think…

Why can’t he just open the presents? Or be calm? Or understand?

Why does it always have to be so hard? Just once. Can’t it give us a second of grace? A day off?

I let the questions fly through my mind so quickly. Why, why why? God, I want to know why?

As I stand there, knowing I need to hurry up and get downstairs to help Jamie, I let myself feel sad. And empty. Because this is the side no one talks about. Or knows about.

I let myself think about all it stole from us.

Most pictures are posed. Most moments staged. My son has no idea what’s going on. Or he doesn’t care. I guess I don’t know which is worse.

We go through the motions like a normal family. You’d never know by our photos.

I live in a world where I either miss Cooper or I miss my life. It’s one or the other.

I never allow myself to think of the future. Or doing this forever. Or it being hard forever. Because if I do, I know that giving myself ten moments to dwell won’t be enough.

I turn the water off. And take a deep breath. And then a few more. It’s time to be done now.

I shove the feelings down so far in my heart that you’d never know I ever had them.

One of the hardest parts is the shame from people outside my world that tell parents like me we shouldn’t be sad. I sometimes think about how unhealthy that is. To lie to yourself all the time. To pretend.

To pretend that it doesn’t hurt when I watch my five year old and his cousins play, talk, and interact while Cooper does not. To watch excitement on all the kids faces but your own son. Pretending is brutal.

I tell myself it could be worse. That’s how I often cope. It could be so much worse.

I could have a sick child. Or a dead child. Or a child that is violent. Or so on.

I take the grace I granted myself for ten pity filled moments and dry myself off.

And let myself thank god for everything it gave us.

It gave me the most beautiful boy with the most precious soul. He is mine. And I love him.

I am off to draw trains. And nurse a baby. And help sawyer build Legos.

And to pretend that what it stole from us isn’t killing me.

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