Tag Archives: arthrogryposis multiplex congenita

Shoe Shopping

Evelyn and I sat in the small office. We were waiting for “Ivan”, the man who would give Evelyn her next pair of shoes.

The night before, as I kissed her blonde head, I told her that she needed to sleep well because we had to go to the “shoe store” the next morning–just her and mommy.

“I will get new shoes?” she asked.

“Yes, baby. You get new night shoes. Remember Dr. Chandran said you needed a bigger size?”

“I can’t wait to get my new shoes! What do you think they’ll look like, mommy?”

At four years old, Evelyn doesn’t yet realize that she is the only one of her friends who wear “night shoes”. She’s had Ponseti brace shoes since shortly after birth. After many weeks of leg bracing to straighten her curved feet, we needed a way to keep her club feet from returning. This would be her fourth pair. She doesn’t know of a night without them. She doesn’t know that sleeping with three leather buckles on each foot, shoes attached with a metal bar, isn’t typical. She just knows that getting new shoes is exciting.

“Maybe they’ll be blue and purple, mommy? That’s my favorite.”

“Maybe, sweetie. Your last ones were blue. I bet they’ll at least be blue again.”

*

At the prosthetics office, our chairs faced a wall that had shoes displayed like they would be at footlocker. Wooden planks lined the back, plastic shelves held the shoes. They were adult shoes. They appeared to be typical tennis shoes. But I knew they likely weren’t. This wasn’t a typical “shoe store” after all.

“How many shoes are there, mommy?” Evelyn asked

“I don’t know, sweetie. Why don’t we count them.”

The nineteen pairs of shoes watched over us as Ivan brought her new braces. They were blue. Evelyn sat still as he strapped them on. She knew the drill. She respected Ivan. She wanted her shoes.

*

Ivan took a moment to think about which way they go on.

“It’s been a while since I’ve fitted these shoes on someone. We only get these cases once in a while.”

I wanted to tell Ivan that the buckles go on the inside. I wanted to tell him that her heel needed to be pushed all the way down so it could be seen through the circle cutout in the plastic. I wanted to tell him that the Pringle chip had to fit on the middle strap just right to protect the delicate place on top of her ankle. I wanted to tell him that I would just do it.

“This is going to be your last pair?” Ivan asked.

“I hope so,” I said.

“We always hope so.”

Ivan had no idea how tiresome it was to strap these shoes on Evelyn’s feet every night. He didn’t know how they were so heavy on her feet when she was an infant that she couldn’t turn her legs with her body on her mattress. He didn’t know that she could never wear footed pajamas (which seems to be all they sell for babies under age one). He didn’t know how those shoes hit the rails of her pink crib throughout the night, sounding like a prisoner clinking a tin can on the rails of his cell. He didn’t know how those hits marred the wood and chipped the pink paint. He didn’t know how much they got in the way of potty training; how she couldn’t get herself out of bed to use the potty and wet herself every morning instead. He didn’t know the struggle we faced for three weeks when Evelyn discovered she could take them off herself (yay!) and then repeatedly came out of bed late at night because she didn’t want to stay in bed (no!). He didn’t realize that we hoped with each passing six-month follow-up appointment with the pediatric orthopedic doctor that we’d hear the news that Evelyn was done with the shoes. That her feet were safe from deforming again.

We still hold out for that day.

*

As we left the “shoe store”, Evelyn asked to carry the bag. It was nearly as tall as her, but pride got in the way of logic. She dragged them down the hall and out the door. She nearly fell several times.

“Take the other side, mommy,” she said.

We carried it out together down the handicap ramp and into the car.

We had our shoes.