The Rabbit Hole of Grief

52274821_366318300618593_6384681580874432512_n

The flu overtook our house this last week.

First the baby. Then Sawyer. Then Cooper. And finally me.

I found myself curled up in a blanket in bed yesterday afternoon.

And Sawyer found me.

He crawled in my bed and gave me that adorable smile of his.

He went onto ask me a hundred and one questions.

He asked me why rainbow trout look like rainbows.

He asked me if I have ever caught a catfish.

He asked me if I was a better fisherman than daddy.

He told me that he scored ten goals at hockey that morning. And ate a doughnut.

He asked me what games I played as a little girl.

He asked me if I had a grandma. And who my mom was. And who my sister’s mom was.

He asked me if we could go to a Lego Park.

And he asked me about the dog I had that died when Cooper was a baby.

 

View this post on Instagram

 

Sawyer is my helper. It’s really quite wonderful. He always offers to hold the baby when I need an extra hand. #bestfriends #brothers

A post shared by Kate (@findingcoopersvoice) on

He asked me who was going to meet us in heaven when we got there.

He went on and on.

I answered every single question until he tired.

As I started to dose I let my mind wander a bit. Into the rabbit hole as I call it.

The special needs parenting rabbit hole.

Cooper has never asked me a question.

He has never laid in bed with me and chatted.

I never know what he is thinking. Or what he is curious about.

Most days I feel like I have no idea actually. I would even go as far to say as I feel like a stranger sometimes. I can see him. I can touch him. But I can’t get any closer.

Some days I even miss him.

I try to get into his world. I try so hard.

Some days he will give me a glimpse. Enough to keep me going.

But most days, I get nothing in return.

I’m supposed to say that it’s fine. That it gets easier. That what we have is enough to get me through.

That getting a grunt is enough to keep me going.

That having him sit next to me for mere minutes out of a day is good enough.

And most days, it is. I want you to know that.

Most days I can see the exquisite beauty in autism. The quirks. The humor. The joy.

Most days I think I am the lucky one. I get to see the other side. I get to see the excitement in a sound. Or a color. Or a texture.

I get to know the victory of a child that has tried, struggled and learned to do a task.

I have seen beautiful success. I have seen heartache and struggle.

But some days, when I am worn down from the stomach flu, and exhausted, I mostly see what I am missing.

My son has never asked me a question.

We have never traded silly stories. Or talked about absolutely nothing and everything while curled up in bed snuggling.

I’ve never watched him hit a baseball. Or catch a fish or ride a bike. I’ve never marveled at his artwork. Or set up a train track and played make-believe.

I’ve never heard ‘I love you.’ Or his favorite color.

And I am truthful when I say, that most days, it is okay. I get hugs. Beautiful, amazing hugs.

I get to love my son. And know that he is safe. I get to give him his best life.

I get smiles. I get to see his joy when he sees a train. And an elephant.

I get to dance around our living room with him. I get to kiss his owies and play peek-a-boo.

I get the beautiful joy of a child forever.

But some days, those things aren’t enough.

I’ve learned that I will never get over it. I will never fully move on. I will always tiptoe gingerly into that rabbit hole of grief now and again.

But as he has aged, I’ve learned to pull myself out quicker.

I’ve learned not to dwell there. Or waste too much time thinking about the moments missed.

Because, it’s too hard. Too sad. Because if I dwell there, I miss the subtle joy.

And the longer I stay, the harder it is to return.

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.

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.

Share this post: