My Life Is Grief, Joy, Love, and Heartache

For me, as a mom, this parenting autism life, especially alongside my neurotypical children, has often like a contradiction. A double-edged sword or sorts. A constant contradiction of joy and grief, both coexisting and intertwined. Neither wrong.

A few days ago, I walked into a gym full of fifth graders and their parents and teachers. A living wax museum it was called.

And my son, Sawyer. He was Barack Obama. Or Barry as we learned he liked to be called.

He was lined up amongst his peers. He was ready to say the 30 second speech he had memorized.

I wasn’t expecting to be overcome with emotion. But I was. I walked into a room, one I don’t know if I belong in, and saw my boy standing and waiting. Typical development on display right in front of me. How effortless it seemed. How wonderful and amazing.

I sorta ran to him. And I gathered him in the biggest hug and whispered in his ear…”I am so proud of you Sawyer. You are simply amazing.” I held back my tears. I didn’t want to embarrass him.

What a gift it is to be his mom. That’s what I thought.

On the drive home I found myself wondering why some children get to talk, and stand in a circle with their peers, and present to rooms of people. And why some children don’t. It feels so unfair sometimes.

There it was. That constant contradiction of joy and grief, both coexisting and intertwined. Neither wrong. Both valid. I acknowledged both feelings, as I’m learning to do.

That night, as I sat at a hockey game for the same boy, I sent a text to my older son. He is 13. When he was five years old, a doctor told us he would never learn to read or communicate really. She said, “game over.” I’ll never forget the finality of her words.

This last Christmas we bought him a cell phone. We didn’t know what it would look like. We just modeled and hoped and tried and waited.

He texts me every day now. His wants and his wishes. Some realistic. Some not.

I swear, I’ve hit the lottery.

“I love you,” I text him.

And a ding with a response. There may be typos. But I can read through them.

He is simply amazing. And what a gift it is to be his mom. I think that every single day.

The greatest lesson I have learned to date in my life is that grief, joy, love, and heartache can all be felt in the same instant.

And none of these emotions are wrong.

They are human.
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.
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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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