Waiting for a Diagnosis

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Before we had our third baby we knew there was a chance.

When I googled, it said something like a 25% chance.

That number felt high. Really high.

So high, that my husband and I fought about it. We cried about it. We debated. We rationalized. We prayed about it.

One day I would say let’s go for it. And he would say…we can’t handle two kids with special needs.

The next week I would be exhausted from therapies and behaviors and say…we can’t risk it. Two kids is perfect.

Or, we’d factor in our middle son.

We wanted him to have a sibling that he could play with. And grow old with. One that he could have silly conversations with and shoot hoops with.

We wanted him to have a sibling to help him care for his brother long after we were gone. An ally. Someone to help carry the weight.

Then fear would creep in. What if we left him with two special needs siblings? The worry would be too much.

We went round and round for close to a year.

One day yes. One day no. One day maybe.

And then it just happened. And 9 short months later our beautiful baby was here, in my arms.

And my goodness was he perfect. From day one.

He slept and ate and smiled and heard every single sound around him.

He was curious and alert. Nothing like his older brother ever was.

But we still worried. We worried about everything.

So much that sometimes I felt like I was waiting for a diagnosis. Which was ridiculous.

I would tell myself I wasn’t going to miss this babies life.

Or waste a minute if he did have it. I was going to be on top of it this time. I would advocate and push. I would know what to do.

And I didn’t want to be surprised. I would have my eyes wide open. The rug would not be pulled out from under me this time.

Until one day, I made myself stop worrying.

I couldn’t live my life waiting for a diagnosis. Because it wasn’t healthy. And I was going crazy.

I couldn’t wait for it to happen. I couldn’t miss one minute of the joy now worrying about something that may never happen in the future.

It’s a funny thing how having a child with special needs will change a parent.

In a way it’s made me manic. Watching. Waiting. Worrying.

But in other ways, it’s made me enjoy every single second for what it is. A gift.

If it happens, I will be prepared. If it doesn’t, I will breathe a sigh of relief.

Either way, I am going to live in the moment. And enjoy it.

No more waiting.

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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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