Caregivers Community

Measuring Life by the Spoonful

Jamie Sumner
Special needs mom, author and blogger
02/19/20  4:28 PM PST

The Spoon Theory: When living with a disability or caring for someone who is, you may find yourself thinking about how you conserve/spend energy (spoons). 

At four in the afternoon, the grocery crowd is sparse, but with the impending rain and the pre-dinner rush, we’re in the countdown to chaos. I turn around to look at my son, Charlie, lilting to the side in his car seat and sucking on a corner of his blanket. He is six and tired from a full day of school. He’s also had both physical and speech therapy for his cerebral palsy. He doesn’t want to go to the store. He doesn’t care that we have no food in the house apart from squeeze pouches and half an onion. There aren’t enough free Publix cookies in the world to get him on board.

The Spoon Theory

The best analogy I can find for moments like these is what Christine Miserandino uses to describe living with Lupus. While having lunch with a friend, she grabs the spoons from her table, and all the other tables, and hands them to her friend—a bouquet of spoons. Each one, Miserandino explains, is a unit of energy, and unlike the majority of the world, those who suffer from chronic illness don’t have any spoons to spare. Eating out is a spoon. Getting dressed in the morning is a spoon. Standing in line at the bank or in the subway is a spoon. Everything demands a necessary investment of energy and therefore forethought. You must pick and choose where to spend your spoons. While the “Spoon Theory” is true for those living with special needs, it also works for those of us who are caregivers as well. We, too, have only so many spoons to spare.

I do not have enough spoons for this errand.

As I sit in the van, the first few drops of rain splatter the windshield. I do not have enough spoons for this errand. There is still a desert’s length of hours left before bedtime. But we cannot live on squeeze pouches and onions alone. So, I gather my keys, my purse, and the newspaper I will attempt to cover my hair with on the sprint from the parking lot to automatic doors leading into the store. I run from entrance to entrance, searching for the Caroline Cart, the only one that can accommodate my son. It’s in the last one, of course.

The grocery store itself is what it always is, a freezing ice box full of shoppers rounding corners too fast. I keep to the middle, the only safe space as Charlie’s wingspan has extended over the years to the point that he can pull almost anything off the shelves. Three sprinkle cookies and thirty-five minutes later, we are walking back outside under the shelter of the grocery store clerk’s umbrella. It is the color of a yellow highlighter against the heavy sky and I couldn’t be more grateful for it or the generosity of this clerk. He has saved me my last remaining spoon so that I can unload both Charlie and the groceries when we get home. Tonight we will have tacos — because I can brown beef in my sleep and there is still half that onion.

Once we are home, I peel off Charlie’s braces like coconut halves. He is stiff from sitting in the cart and his legs spasm. He starts to cry when PBS Kids doesn’t load on his iPad fast enough. I want to cry too. We are fresh out of spoons. But by some miracle, when my spouse gets home an hour later, we have rallied. The house smells like onion and garlic and the sky has cleared enough to be brighter than it was two hours ago. We sit down to eat in the yellow glow of early evening.

I am out of spoons, but today it was just enough.

That night after Charlie is asleep and I am lying on the couch, boneless and spent, I close my eyes and take a mental inventory. I am out of spoons, but today it was just enough. It got me through. Some days end in a deficit and I am left to recover as best as I can and some days end with extra and I feel that the world has worked its magic again in my favor. But the thing I am certain of is that tomorrow is another day and another chance to use the spoons I was given for the benefit of the boy who means so much to me.

child with special needs

Jamie Sumner is a special needs mom and author.

Discover her new book, Roll with It.

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