Will it Always Feel This Way?

I’ve been crying a lot lately. The list of public places in which I’ve broken down is growing and I’m not sure if I should be glad I have the ability to let it all out or if it’s reaching an unhealthy point. A few weeks ago it was a Chic-fil-a while I watched my kids play. There are parking lots all over this city that have seen my tears. My steering wheel has tried to comfort me to no avail.

Today, it was the parking lot of an arts center in north Texas. They have an interactive “Outer Space Exhibit” there for kids. My daughter is finally feeling better after a rough bout with Strep throat and we’ve been cooped up for quite a while. I decided to bring the kids to the exhibit. I had seen it once before and knew they would both like it.

Like I always do, I warned my daughter, “ Be ready to leave at any point. We don’t know how long this will work for your brother.”

I knew the risk, but we had to get out.

Two words: kinetic sand. Oh, how my son loves the kinetic sand. He has a handful of words in his vocabulary, mostly having to do with foods and animals he loves, some shapes, and his favorite children’s shows. He’s also recently started saying his sister’s name, a development that has her over the moon. I’m still waiting for “I love you, Mommy.” That will be my golden moment.

Right now, I get by on kisses and raspberries. He points to the kinetic sand. “Apple.” I smile and roll it up in a ball for him. We’ve been through this. I know what he wants me to do. He points again. “banana.” “Okay, here comes a banana, bud.”

When all was said and done I had sculpted him an apple, a banana, a slice of pizza, a chicken tender, a cup of juice, a triangle, a diamond, and a rectangle – all at his request. All words he said. Every word out of his mouth is a gift. But no one in the exhibit knows that. He sat and happily kicked his feet while he looked at his shapes and foods and rearranged them.

Meanwhile his sister explored the exhibit, running around, checking out the constellations in the star room and climbing with other kids on a dome structure. For a few short minutes, things almost felt normal. Typical. Average. I embraced it.

I allowed myself to feel welcome in the normal world, here on Earth, in outer space.

Then came the inevitable. It’s not a matter of “if”, just “when”.

A little girl approached as he sat there, and in one motion, just smashed his treasured shapes and foods into an unidentifiable pile of sand. And his world came crashing down. I wondered, stupidly, if I could salvage the situation. I offered to remake them. I comforted him. For a brief moment the screaming ceased and I wondered if a miracle would take place in that outer space exhibit today. My mistake. Maybe if I had not entertained that thought for that moment, we could have gotten out quicker.

He got up and ran across the room. Hands over his face. Tears streaming down his cheeks. I’m convinced his screaming has actually damaged my hearing. It is the loudest thing you will ever hear. It’s left ringing in my ears for hours. I tried to scoop him up. He ran again. I got him. Grabbed his shoes. Grabbed my daughter’s shoes. Called to her.

She knows the drill but she is still resistant. She’s mad. She’s mad that she is being made to leave. Again.

Yesterday, it was the grocery store, and she wanted to pick out a treat. We never got that far. We left empty-handed.

Last night, he ruined her art work. You just can’t leave anything where he can get it, if you want it intact. She knows this. But honestly, we’re running out of places to put things out of his reach.

I was holding it together, myself, doing everything I could to get us out of there quickly. And then I heard it. One worker saying to another who had walked into the room, no doubt following the sound of shrieking, “She’s leaving now.”

As I’m shuffling my mini, four-year-old asteroid toward the door, this woman sees us heading that way and says, “We’re just trying to record in the next room.”

Oh, pardon me. Pardon my son and my devastated seven year old. You see me leaving and you’ve confirmed this verbally with your co-worker, so I can only assume your point was to make sure I knew exactly what we were interrupting. You can’t possibly have meant that if you ‘weren’t’ recording, this lovely display by my son would have been perfectly acceptable. Don’t worry. I get it. The noisy ones are leaving.

I always know exactly what we’re interrupting, inconveniencing, and whose lives are being affected.

The little girl that smashed my son’s sand shapes into nothing gets to stay. She’s not loud. She’s not interrupting your precious recording. I’m well aware that in this crazy world, it’s okay to destroy someone else’s treasure as long as you do it quietly. And your complaint has been registered with the board, believe me. I’m filing it right next to the old lady in the grocery store who thinks I need to spank him more.

Will it always feel this way?

There is nowhere for us. There is no ONE for us.

I promise I’m trying to stay positive. But I’m succumbing to bitterness. I’m reaching jealousy. I see the pictures on Facebook – all my friends’ kids going about their lives and doing everything they are expected to – their beautiful stories being written by their parents for all the world to see.

I’ve never been bitter before. It’s debilitating. I’m reaching desperation. Everything in my life is drained. My energy, my patience, my bank account. I can feel the gravity of it.

Even in the outer space exhibit, where for a brief moment, I felt like I could exist on Earth.

I wonder if I unloaded all of these thoughts on the woman, whose main concern was the recording she so wisely decided to conduct next to a children’s interactive exhibit, if she had a full picture, would she empathize? Would she still feel the need to escort us out even though we were clearly already leaving?

What if I said, “special needs?” What if I said, “ Autism?” Would she understand then? Would I? What’s the magic word?

Why does there have to be a magic word for empathy to kick in?

I’ve read all the stories of other kids like my son, too – all the stories their parents tell. I’ve read about their successes and their failures. I’ve spent countless hours looking for answers and miracles. What “worked” and what didn’t. And I can’t help but want to jump to the end of our own story. I know we have to turn the pages in our book of life. I know I’ll have to pay my dues to be in this club. But I didn’t ask to be here.

I don’t want to be a member of this club. I know I’m not alone, but somehow that’s no consolation.

I should have stayed home. I just confirmed today that there isn’t even a place for us in outer space. No where. Not the moon. Not a neighboring star.

My little family, this little travel trailer we’re staying in to visit this city in, Texas, USA, Earth.

We are a planet unto ourselves. And we love each other, but it’s still lonely out here.

Written by, An Anonymous Mother

Often pieces are sent to me by parents that want to share their stories, but don’t feel comfortable sharing their name. I totally understand and honor their wishes.

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Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.

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Comments

  • Heather

    July 18, 2018 at 11:33 am
    Reply

    There is no right answer because every story is different while being the mostly the same. Some things get better just to get worse later. Some […] Read MoreThere is no right answer because every story is different while being the mostly the same. Some things get better just to get worse later. Some things never get better. As the song goes in the Lego movie "Everything is awful" I've been there. I've been on this road for 13 years now and I still struggle with the bitterness and the jealousy creeps in. For the same reasons, for new reasons. Watching my son's peers start to get jobs and smiling photos posted by moms of their new drivers make me weep in the dark. You are not alone. You are NOT. Our planets just have to orbit around our own suns. And it sucks. Read Less

  • Colleen

    July 19, 2018 at 9:02 am
    Reply

    I totally get the bitterness. My son just turned 7, and I still get caught up with "why him?" but not as much […] Read MoreI totally get the bitterness. My son just turned 7, and I still get caught up with "why him?" but not as much as I used to. I have hope that one day I will get passed it. You are not alone. Read Less

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Finding Cooper's Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you're never alone in the struggles you face. And once you find your people, your allies, your village....all the challenges and struggles will seem just a little bit easier. Welcome to my page!

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