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Parenting: When You’re the One Who’s Less Fun

Jamie Sumner
Special needs mom, author and blogger
07/24/20  10:56 AM PST

Parenting an Only Child

Before my oldest son Charlie, who has cerebral palsy, started school, his days looked a lot like this:

Wake up to sunshine through the window above his bed and my face. It was always my face first thing in the morning, smiling down at him as I hooked up his feeding tube before he learned to eat by mouth. We would cuddle and listen to the whoosh-whoosh whir of the pump before moving into the kitchen where there would be music playing from the laptop on the counter. There was always music playing! We played Ray Charles’s “You are My Sunshine” and the Rushmore soundtrack–he liked all the soundtracks for the Wes Anderson films. Something about those offbeat rhythms spoke to him.

Often, we would walk the neighborhood and I would narrate: “Look, Charlie, what do you think is hiding in the knot of that big oak tree? I say we investigate.” Or “I see a squirrel that looks like he has something to say! Let’s follow.” And so I became the Piglet to his Pooh as we wandered through the woods in search of adventures.

We also picnicked and made trips to the zoo to stare wide-eyed at the flamingos and also managed to squeeze in aquatic and horseback riding therapies. Dinners were homemade and messy because it’s easy to be messy when you only have one kid. Even a fragile kid like mine likes to get dirty. Bedtimes were leisurely. Life was fun. I was fun.

Having Twins Changed Things: Parenting was Now About Survival

And then Charlie turned two and I had twins and life became about survival. My goal was to make sure everyone was rested, fed, and kissed. Somehow, the days turned into weeks, which turned into years, and now here we are with all the kids in school and I am back to working a job which calls me out of town more than ever before. The pace of life is faster now than those early days with Charlie.

The first time I left town for work, I was terrified. After my husband dropped me off at the airport, I stood on the hot, smoggy curb and cried.

I was sure the world and house and family would fall apart without me.

Would he pack their lunches the right way?
Would he remember that Wednesday is library day and hunt down their books to be returned?
Would Charlie eat for him as well as he does for me?
Would they go to bed at a decent hour?
And almost so quiet it wasn’t even there, this thought: would they miss me?

There have been many trips since that first trip. I don’t cry on the curb anymore. I know everyone will be fine and also that I will come home to a disaster of a house and laundry higher than my head. All of this is okay. The hardest part, if I’m honest, are the pictures my husband sends me while I’m gone. There are pictures of the kids at the top of the Adventure Science Center and in the Planetarium and on hikes and riding Charlie’s stander like it’s a tractor. I know he will let them eat so many chips at the Mexican restaurant down the road that they won’t touch their dinner. Everyone is happy. Everyone, dare I say it, is having fun.

My Family is Thriving

I know I should be grateful and in my better, stronger moments I am. Not only is the family surviving without me, they are thriving. But every now and then I feel that little twinge in my heart as I remember what it was like when I had Charlie all to myself—when we wondered at the bees in the poppies and stopped the ice cream truck and dug in the rocks at the park for hours and I was his entire world. He even laughed at my jokes. Life was slower then and it was easier to be “the fun one.”

It’s hard to let go of that reality. But also…I don’t really want to be everybody’s world. That’s too much weight to bear. Each time I wave goodbye for a trip as they yell “I love you!” and toot the horn, I am reminded that all of this works because each and every one of us is giving it our best shot. As the needs of our family shifts so will our parenting roles and strengths. In this current season of our lives, I’m the one who does the laundry and makes sure the homework gets done, which leaves them free to ramble with their dad on the few days I’m gone. It’s fun because it’s different. Not because it’s better.

special needs parents

Jamie Sumner is a special needs mom, author and blogger.

Discover her new book, Unbound: Finding Freedom from Unrealistic Expectations of Motherhood.

Read her blog, The Mom Gene.

Follow her on Facebook.


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