At Least He’s Not Dying

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“My coworker says to me “Well at least he’s not dying.” She meant it with good intentions I’m sure. But it stung.

I was in fact mourning the loss of the life I thought my son would have.

Would he ever talk to me?

Would he ever go to preschool?

Would he ever make it to high school?

Would he drive? Fall in love?

Have a family of his own?

“At least he’s not dying” it still burns. Maybe I’m being selfish. Maybe I am being ungrateful.

My son is in mostly good health. He isn’t going to die from his condition. He is just going to learn differently.

His speech pathologist said something that stuck with me. “Your son may never talk again, but we’ll get you the tools to understand what’s going on in his little mind.”

Wait what? Reality slap.

My baby may never say “momma” again? I need tools to understand him?

My brain can’t comprehend.

We don’t have an official diagnosis. I pray we never do.

But in my gut, I know my son is autistic. And as widely as that is accepted, it still doesn’t feel great.

It’s hard not to play the blame game.

Did I eat something during pregnancy?

Was it the medications he’s had to take the last year?

Did I not take him to the doctor fast enough when he had RSV?

Did I deprave my baby of oxygen too long, because I thought it was just a cold?

So many questions that will remain unanswered.

No my baby isn’t dying. But yes I am mourning his “normal” life.”

Written by, An Anonymous Mother

Finding Cooper’s Voice accepts guest posts from writers that 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 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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