I Will Never Be the Same

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Yesterday, I couldn’t get out of bed.

I barely willed myself to do the dishes.

I can’t explain why. Nothing had really “happened.”

There wasn’t some explosive meltdown or feelings of inadequacy.

I just got scared. So scared.

I remember when I was a child and I would wake up from a bad dream and find myself in between my parents, completely safe and free or fear.

Now I find myself in my son’s bed, my body curled next to his, never wanting to let go, knowing every morning I have to. 

Some days I just can’t handle the fear.

I don’t really know how to explain it.

I succumb to something deep inside, a feeling of pure panic, a realization that ever since becoming a parent my entire existence and joy come from knowing he is happy and he is safe.

There is no true happiness that exists for me outside of that.

If he is happy, truly happy, than I feel free. Free of fear and worry. But if he is not, I don’t know how I can bare to wake up.

This eb and this flow of worry and release controls my life. I sometimes wonder who I was before it. 

Being a parent is the most exhausting and trying experience I’ve ever known. Not because of the lack of sleep, the constant needs or the reality of taking care of someone.

I love that part. That’s the part I’m actually good at.

It’s the attachment. The attachment that feels like a drug since the moment they lay them in your arms.

An attachment so raw and so real you don’t want to startle it, break it. You want it to last forever and yet you are so aware that if you ever lost it, you would never be the same. 

I never knew anxiety before all of this.

I never knew one single thought could keep me in bed all day.

I never knew panic in this way. One single moment could bring my entire reality to it’s knees, scrambling to gain control again.

I never knew guilt to be this strong. A different pain I hadn’t really experienced.

A feeling of worry that it’s never good enough, that you don’t possess every answer to make it ok.

I never knew sadness could be felt so deeply and yet so far away, confusing me into places I’ve never gone before. 

Because all of it, every emotion felt, every hope desired, every moment both deliriously joyful and devastatingly painful is part of you now.

I don’t know …and I don’t think it can be escaped. Maybe that is what paralyzes me. 

I’m standing in line at school waiting to see his ragged mop of hair and his big Italian brown eyes.

He sees me, he runs to me, he jumps into my arms.

He says “Hi Mom, I missed you.”

I ask him “How was your day, did you have fun” 

“I don’t want to talk” 

“Were kids nice to you, did you play with friends:”

“Please, just don’t talk to me right now.”

We go home to our routine. I have things to do as always.

You are too tired to do anything but unwind from a full day of trying to keep it together.

I read your home report. You did well except for the moments you got upset and couldn’t control your body.

I put that away, I can’t really think about that right now.

We eat dinner and get ready for bed. You curl up to me and say ‘I love you so much, Mom.” 

“I love you too. Buddy, are you happy?”

“I don’t want to talk about that.” 

You fall asleep. I stare at your perfect angelic face.

I pray, the only time I pray these days. “Please God, just please make sure he is happy. Protect him from this world.”

Some mornings I wake up, and I know he’s happy. Those days I wake up happy too.

On those days, life and joy fills our home.

Other days I wake up with that fear…a fear of the unknown, a fear that I won’t always be able to protect him.

On those days, he’s still happy. On those days nothing has changed except for me.

I am a mother to the most beautiful, autistic boy and I will never be the same.

Written by, Rachel Menditto

A mom to one, living in Lancaster, Pa with her husband, dog and two cats. Learning to understand, accept and fight for autism every single day.

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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