It Will Always Be Like This

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It was a normal Monday afternoon. My boys were playing while I finished up my work on the computer.

I closed the Macbook and started thinking about dinner when I heard a large thud followed by crying.

My 20 month old had fallen off the toddler bed and hit his head. He was bleeding and a bump was forming. As I was trying to check it better and hold an ice pack on it, my sweet baby stopped breathing. He’d done this before.

He gets so mad and screams and then just stops breathing.

As I held his limp body close to my chest, I barked at the big boys to get their shoes and coats and get to the van. We were headed to the ER.

By the time, I was strapping in my toddler, he was doing much better. His head was still bleeding, but he had decided to breathe again, thankfully.

I started the van and noticed the time. My dad should be off work and he’d be driving right by the ER. Maybe he wouldn’t mind to take my oldest son with him.

You see, my oldest son is Autistic. That means he is different than other kids. He moves his body constantly.

He builds with Legos for hours every day. He doesn’t talk much, but he’s never quiet.

If there is a vending machine, he must buy something. He carries around a stuffed animal all the time.

He won’t eat anything green. He has a service dog. And he does not like hospitals, doctors, nurses, medicine, or waiting rooms.

He especially does not like waiting rooms.

He’d be much happier going to grandpa’s house, so I called my dad.

No answer.

I felt my heart beat harder and I realized I was holding my breath.

My mind started to race..

Did I have the iPad in the bag? I hope it’s charged.

Did he even bring his stuffy with him?

There’s a soda vending machine in the waiting room. Do I have any dollars?

I can’t remember if it takes debit card; why can’t I remember? I’ve been here probably 10 times in the last year.

I think I have some snacks in the backpack. That should help keep him calm.

What if he starts screaming like the last time?

And then it hit me.

My baby was bleeding and lifeless a few minutes ago.  And here I am worrying about an ER meltdown from my 8 year old.

Will it always be like this?

Is this how normal moms feel?

Am I crazy?

Then, my dad called back and was happy to pick up my oldest son.

I felt total relief.

Later, after everything calmed down, (my toddler was fine, by the way), I couldn’t stop thinking about those couple of minutes on the way to the ER.

My friend and mom tried to console me and tell me that I am a mom to more than one kid and they all have different needs and that it would be crazy for me not to think about my oldest son’s needs at that time.

I was doing what every mom would do. But, honestly, I don’t think they get it.

My baby was bleeding. And I was thinking about the iPad and the vending machine.

I was cool as a cucumber when my baby stopped breathing.

But the thought of sitting in the waiting room with my 8 year-old brought me heart palpitations.

That’s what Autism has done to me, to our family.

It forces itself first.

It is center in every situation.

It decides where my other sons’ birthday parties are held and who is invited.

It tells us how loud the music in the car can be.

It tells us which movie we’ll watch (for the hundredth time.)

It makes me prepare multiple dinners.

It dictates what events we attend.

It makes us late. But that’s not all Autism is. And it’s hard for me to write about it like that.

The truth is, I love my son fiercely. I love him exactly how he is. I love his laugh and his voice.

I love that he spends his time building with Legos. His brain is so creative and when I watch him build, draw, or play, it shows me what he’s thinking.

I love that he doesn’t feel the pressure of society- of looking a certain way, of keeping small feelings, of being neatly packaged.

I love that he is the same person no matter where he is or who he is with. I love how he loves his brothers and his dog. I wish we all could love like that.

So much of him wouldn’t be, without autism.

It’ll always be like this, this constant battle between loving and hating Autism.

Autism has defined our family. And sometimes, that feels awful.

But usually, I am so thankful for it.

It helps us see people differently.

It teaches us compassion.

It shows us a new perspective.

It reminds us what is really important.

It helps me feel small things in big ways.

It makes us stand up for others.

It shows us how to really love.

It will always be like this.

Written by, An Anonymous Mother

Finding Cooper’s Voice accepts guest posts from writers who choose to stay anonymous. I do this because so many of these topics are hard to talk about. The writers are worried about being shamed. They are worried about being judged. As a writer and mother I totally get it. But I also understand the importance of telling our stories. And this will ALWAYS be a safe place to do it.

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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, subscribe for exclusive videos, and subscribe to our newsletter.

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Kate Swenson

Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper's Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, will be released, April 5, 2022.

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