blog.

I Won’t Give Up

kate 18

Yesterday was my dad’s birthday. 80 years young I told him on the phone.

‘I’m old Katie Marie. I’m old.’ When he said it we both laughed. Like we always do.

As we chatted about the weather and my brothers and kids and how he misses driving, I felt the shift in time. I am old. He is older. Neither of us young anymore.

We laughed a lot. Which felt like putting on an old lived-in sweatshirt that you’ve had for years. Each of his laughs brought me a sense of comfort. He has the best laugh and one of my favorite pastimes is pulling it out of him.

As our chat neared the end he talked to me about the nursing home he lived in for six months. After his stroke. The memories hard for him. Hard for me too.

‘I’ll never forget the screaming’ he said. ‘A lot of the residents screamed all night long.’ He went onto explain how he felt lucky to have his voice. ‘Those people screamed because they couldn’t talk and it sounded like they were in pain. It was scary sometimes.’

With his description, I felt my heart and my mind jump to attention…and I thought of my Cooper.

The yellow haired boy who is tucked in every night next to his younger brother. The boy who sleeps with no less than 7 blankets and has piles of treasures stacked next to him. Often when I check on him, and kiss his cheeks, I will wonder what he is dreaming about.

He is safe. He is loved. He willl never feel pain. Because I won’t allow it.

My mind ping-ponged between now and 70 years from now.

When my son was diagnosed with autism at age 3, then severe and nonverbal at age 4, and even more in the years to follow, I told myself that the worry would someday end. That eventually, we would reach this plateau and he would be safe and I could set down my fears for his future.

And that I wouldn’t have to advocate forever. Because the world would understand him like I do.

Sometimes I write on this page to show the beauty and joy of my son’s autism. Sometimes it’s to educate or teach a lesson. But this post, the purpose is different. It’s for me to face my fears and to take away their power.

See if I let the worry of my son at age 80 consume me now, then I will lose the joy of today and tomorrow.

I have to type the words, acknowledge them, and move on.

My dad promised me when I hung up that he would come and see me. That he wouldn’t give up. And last night, I kissed my sweet boy’s head and promised him the same thing.

I will keep fighting Cooper and I won’t give up.

I don’t think my dad will make it down to see me again. And that makes my heart ache in a way I can’t describe.

So I make promises to my boy. I will never stop seeing him. His gifts. His struggles. His joy.

I won’t give up.

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. Follow us on FacebookInstagram, and join our supporter page, Coop’s Troops, for an amazing community full of support and understanding

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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