Diagnosis Day

1 in 189 girls are diagnosed with autism. Today, my girl officially became the 1. I pictured her soaring in with a superwoman cape and “saving” all the other little girls from this fate. But as we know, it’s not a choice like that.

I’ve never worked so hard for a piece of paper I didn’t ever want. The piece of paper saying my daughter has a chronic disability for which she can never be cured took nearly a year of constant phone calls, evaluations to submit, i’s to be dotted and t’s to be crossed. Sitting in the developmental pediatrician’s office, I watched as the doctor critiqued my 2-year-olds each move.

With every fiber of my being, I willed her to pretend to make that toy airplane fly. She didn’t. I silently pleaded with her to please crawl into my lap, look into my eyes, call me “mommy,” and end this nightmare. The doctor would call me a silly worried mother, and we’d go home to a new life.

It never happened.

Reading the exam notes was the final knockout punch that I’d been waiting for. Scanning the page, a check mark marking off each skill where she fell behind her typical peers. Each check mark, a sharp sting. Check. Check. Sting. Sting. A pain so real I could’ve pointed to my heart to show you exactly where it hurt.

Leaving the office, I got into my car, rolled up the windows, made sure no one was watching, and screamed. I screamed as loud and as hard as I could bare. It felt like I’d been sentenced to an island. I knew about the other affected parents living on their own islands. But their child, with the exact same diagnosis as mine, was not like mine. Not even a little bit.

What works wonders for them doesn’t do a thing for us and vice versa. A cruel twist to an already isolating condition.

I go home and search tirelessly on the Internet for the person that will have all the answers until finally I realize that that person is going to be me. And that feels like a mistake.

I think, me? But I’m not qualified for this. I am not emotionally, financially, physically, mentally, intellectually, or in any other way equipped to handle this. And besides, I did everything right! I did everything I was supposed to do. I took the prenatal vitamins. I read the books. I was a good mother. We don’t deserve this.

I wonder how I will conquer a mountain so high that I can’t even see the top.

And then I stop.

And I remind myself that this isn’t about me. This didn’t happen to me. It happened to my daughter. It is her mountain.

My job is to give her the climbing gear and to make peace with the mountain. I remind myself that today isn’t the day my daughter got autism. Rather, with that piece of paper that I worked so hard to get, one thousand new doors of opportunity and assistance will open for her.

I remind myself to celebrate my funny, happy, loving, healthy, energetic, sassy girl that is so much more than those check marks on a page. I promise her that I will expect more, not less, from her, and in turn, I will advocate for her more fiercely than I ever thought myself capable.

I decide that today isn’t the day I lost the fight. It’s the day I begin it. I look past the mud. I search the sky for stars.

Written by, Annie Suhy

Annie Suhy lives in Cleveland, Ohio with her husband and daughter Stella (2 1/2). Stella was diagnosed with autism in February 2018 and they are just beginning to navigate this mountain together.

Interested in writing for Finding Cooper’s Voice? LEARN MORE

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.