The day I learned to accept my son’s rare kidney disease

By Laura Leffler

I saw the other moms looking at him on the playground. They tried to hide their curiosity behind their sunglasses, taking quick glances at my almost two-year-old son, then away, then at his twin sister and at me, back at him, and away, away, away.

He was so small, weighing as much as a typical eight-month-old, but his face was adult-like in its angles, in the way his bones sat just under the skin. There was no fat left on any part of him. His arms and legs were skinny, long and brown, and his belly was so big and round that he had to wear suspenders to keep his pants up. He was too old to crawl and he knew it, but his big belly made it hard to balance, so he walked on hands and feet—a little bear.

Still, my son wanted to play. At home, he would crawl over to his shoes and toss them at me. “Eees,” he would say. “Swings.”

For so long I kept my son to myself. The diagnoses, the hospitals, the occupational therapists, physical therapists, eating specialists, the fear that sucked up my insides like a vacuum any time the doctor called. For nearly two years I silently loathed the other mothers for their curiosity and normalcy. I glared at the children who stared at my son. I held his illness deep inside me the way I would hold shame. In the dark, it rotted and grew. It spread through me. It ate me alive. The psychologists I saw couldn’t advise me. The support groups I found were full of schadenfreude and gawking and fresh terror. My husband expressed nothing but pride in our son—born too small, too sick, with kidneys the size of oranges in that tiny, blue body, but look at him now! He wants to play on the playground! He talks! He plays puzzles! He’s just like the other kids!

Yes, I’d think, look at him now. Where my husband saw everything that our son had accomplished, I saw everything he had yet to achieve. I saw hardship. I saw difference: between my son and his healthy twin, between my son and all of the boys his age who looked, and played, like little linebackers. I fought the urge to hold my daughter back so that she wouldn’t pull too far ahead of him. That rotten shame was growing beyond me, growing tentacles around our family, squeezing out the joy.

The little boy playing in the sandbox was about six years old. He was sweet, teaching my son to use the digger on one of his trucks. He looked up at me with searching  eyes—the kind of eyes some children have when they have questions and the desire to see everything and understand it.

“Why is his belly so big?” he asked.

It was a punch. While watching them play, I had deluded myself into thinking that he hadn’t noticed my son’s difference.

“He has big kidneys,” I said bluntly, defensively.

The boy was just child, I told myself, not some rubbernecker. What was I trying to hide anyway?

“Do you know what kidneys are?” I asked, softening.

He shook his head.

“You know your heart? Your lungs?”

“Yes,” the kid said proudly, little fingers pointing to chest and ribs.

“The kidneys are like that,” I told him, putting my hands on the small of my back. “They’re here. They help your body work. And his are bigger than other kids’. Bigger than mine, even.”

The kid nodded, as if accepting these new facts.

Then, magic; he twisted in the sand, landing right next to my son again.

“Crash!” he said, continuing the game right where they had left off. My son squealed with delight, grinning so hard it was like he was trying to split his face in half. I felt a jumpstart somewhere deep inside me, a relief, a joy, right in the place where the rot had been growing.

After that day, I talked to everyone I saw glancing in my son’s direction. He was born with a rare kidney disease, I would tell the parents. He has great big special kidneys, I would say to the kids. Now my son will pull up his shirt to show off his belly. Look at this! he will say, happy, proud. That child in the sandbox, with his brazenness and quick acceptance made me realize that in keeping my son’s illness to myself, in hiding it, I wasn’t protecting him. I was teaching him to be ashamed of a big, beautiful part of himself. I will never make that mistake again.

Laura Leffler is a writer, art historian, and mother of three. She lives in Los Angeles where she shouts it from the rooftops every day.

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