What If This Is It?

14609_931151606895899_9138094779712891242_nI’ve been really, really off lately. Irritable. Crabby. Most definitely not happy. I’ve even noticed that I am avoiding Cooper a little bit.

It started after his birthday party on the 6th. That was a tough one. We changed our whole lives for Cooper. Every single thing is different now. And that’s fine. I have zero regrets. And every month we are told by Cooper’s therapists how amazing he is doing. Thriving they say. Better every single week. Amazing eye contact. Such a sweet boy. So engaged. Just a joy.

So, I thought his party would be different. It wasn’t. He was still very autistic. And it leveled me.

He has come so far. Hell, we have came so far. 1 full year and still autistic.

And then came Christmas party after Christmas party. Lots of ipads and iphones, movies, etc. Begging him to open presents. Seeing how people want him to be excited. Seeing how they don’t understand. It just kept repeating itself. He doesn’t really care about the presents. He doesn’t eat any foods.

I think I spent 3 full weeks holding my breath. Walking on eggshells. And it really took it’s toll on me. But, honestly, how could it not.

My neck is tight. I’m exhausted. I get sleep and yet I never feel rested. The weight of autism is a lot.

So, I’ve been taking a much needed break. I’ve been off from work now for a week now.

And I’ve spent a lot of time watching and observing Cooper. I see improvements. Lots and lots. He has very few meltdowns. He even sat down the other day and built a tower of blocks. I can’t even add up the amount of time I, and other teachers/therapists, spent trying to get him to stack blocks. And after 4 years, out of the blue, he sat down and did it. Just like that he was ready.

I’ve also spent a lot of time considering the future and what’s next. When I picture Sawyer as a grown up I see an athlete. I see an adorable boy and then a man and then a daddy. I can see it play out. When I look at Cooper I see none off that. It’s dark.

And a few days ago it hit me.

I think this is it.

I am a really intuitive person. I can read people. I am always listening. Nothing gets by me. And I’m usually right when it comes to Cooper. I was right about the ears, and the hearing, and the language, and so much more. I was right about the autism.  And I never wanted to be right. I prayed to be wrong about so much of it.

But lately, it’s hitting me hard.

This could be my forever Cooper. No words. No friends. No growing up. He might stay a little boy forever.

I’m so scared. I always think I am passed the different parts of the grieving process. Denial, anger, grief, anger, sadness, anger, jealousy, fear, fear, fear and ultimately acceptance. Right? That’s what are all striving for.

I can see acceptance. It’s right there. Right out of my reach. One step closer and two steps back. It’s never ending.

Jamie and I can laugh and discuss the future at times. I can even say, “Cooper has autism.”

But, I guess I am at this unknown part of the process now. The step BEFORE full blown acceptance. The part that I didn’t know existed.

I call it honesty. Or clarity. Seeing the situation as it really is. No more blinders. And it is so heavy.

Avatar photo

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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7 Comments

  1. Ain't No Shrinking Violet on January 2, 2015 at 12:46 am

    It is indeed very, very heavy. I’m sorry.



  2. picklehead1wigglebum1mum on January 2, 2015 at 9:28 am

    I just want to give you a massive hug. Sending you so much love xxx



  3. Jill on January 2, 2015 at 8:29 pm

    <3



  4. kim on January 5, 2015 at 3:13 pm

    prayers and hoping there is a positive light soon! xo



  5. A Miracle In the Works on January 6, 2015 at 5:04 am

    Hugs!!!



  6. Hiba on February 2, 2015 at 12:33 am

    Hi

    I read all ur blogs in 5 hours last night and i kept thinking oh my god this is me and my family. I have a son almost as old as cooper. My son will be 4 years this june. And i just wanna tell u r not alone. Somehow i was praying by the time i read the last blog this story would end happily because that would mean my son will talk too.
    I am in tears writing to u and sending u a big HUG



    • Avatar photo findingcoopersvoice on February 2, 2015 at 12:40 am

      Your comment had me crying. Hugs to you. It’s so unbelievably hard friend. And no one will ever understand but the moms and dads that are immersed in it. Hugs to you too!!! I’m here for you!!