The thing I hated the very most was watching my mother take care of Dani and hurt him so much while she did so
Having Dani as a little brother wasn’t easy. In fact, it was hard.
There were a lot of things that were hard about it. It was awful to have my parents so occupied with Dani, it was awful when he was in the hospital for ages, it was awful when I needed to go to Aunt Rivky every day after school, and it was awful when no one was around for me to talk to about the science fair or the baseball game.
I hated how Dani and his machines took over our house. I hated that he had tubes coming out of his stomach and out of his nose. I hated the incessant beeping and I hated the stern doctor who came to check Dani at home and always ended up calling an ambulance. I hated watching Dani having a seizure. But the thing I hated the very most was watching my mother take care of Dani and hurt him so much while she did so. Sometimes, when she used the suction machine or when she replaced the oxygen tubes, she cried more than he did. Dani screamed and writhed and I hated, hated, hated watching him suffer.
One day I came home from school and pushed open the door. I was hot and tired and sweaty. I also wanted to ask my mother if I could go to Aharon’s house to work on the mishnayos project. But my mother wasn’t around, and the house was quiet. No monotonous beeping or shrill alarms reached my ears. My heart started beating faster. Dani had felt fine that morning. I held him while my mother helped my little sisters get ready for school, and he smiled at me with those big round eyes as I gently sang to him, the whoosh of the oxygen concentrator the continuous background music to my vocals.
Tatty came to greet me. Just by looking at his shoulders I could see how sad he was feeling. They were slumped and looked almost like they were too heavy for him to hold up. “Dani?” I whispered.
“Hi, Elya,” he said, reaching out to touch my shoulder. “How was your day?”
“Where’s Dani?” I asked, feeling the tears stinging at the corners of my eyes. “Is he back in the hospital?”
Tatty nodded silently and I tried to gulp around the huge, mushy lump in my throat. “Why?” I asked, my voice cracking. “He was so happy this morning. He was doing well.”
Tatty looked at me sadly. “He had a massive seizure soon after you left. He’s back in the PICU.”
PICU stood for Pediatric Intensive Care Unit, where the very sickest children go.
“I wanted to come home to see you,” Tatty continued in a low voice. “The girls are already at Aunt Rivky’s house, but I wanted to see you before you go there. My brave bechor.” Tatty’s eyes looked wet.
“Thanks, Tatty,” I mumbled.
My father reached over and gave me a tight hug. “I know it’s so, so hard,” he said into my ear. “It’s hard for me and Mommy too.”
“I know,” I said, the lump getting bigger and mushier and harder to swallow around.
Tatty sighed, a deep sigh that came from deep inside of him. “Come, Elya, I’ll drive you over there now.”
Only after Tatty dropped me off and drove away I realized I hadn’t even asked him if I could go to Aharon’s house. I trudged up the path to my aunt’s front door. My little sisters were glad to see me, and Aunt Rivky gave me a sympathetic smile and a plate of chocolate cookies with a glass of milk. In my house we didn’t use glasses. Only disposable cups. Maybe once we used glasses, a long time ago. Probably before Dani was born.
I half-heartedly ate some cookies and drank most of the cold, soothing milk. The girls retreated to the playroom with the cousins. Aunt Rivky moved about the kitchen silently, and I was grateful for the quiet. Mommy called, and I spoke to her. I could hear Dani in the background, and beeps, so many beeps. My eyes were stinging again when I gave the phone back to Aunt Rivky. She finished speaking to Mommy and began to wipe the counters.
“Why?” I said suddenly, feeling like I was choking on the huge mushy lump in my throat. “Why does Dani have to suffer so much? And my parents? And me?”
Aunt Rivky put the rag down and came to sit beside me. She pressed her thumb onto a crumb on the table and it crumbled into even tinier crumbs. We both sat there soundlessly for a while.
“What happens when Dani’s oxygen tubes come out, or he needs suctioning?” she asked me suddenly.
“His sats drop.” Sats is short for “oxygen saturation levels” — the amount of oxygen in his blood. I pictured the red numbers on Dani’s oximeter dropping from 96 to 94 to 91 and then down to 88 and 85 and 82. The machine beeping frantically, getting shriller and shriller as the numbers dropped. When the screen read 79, the oximeter wailed.
“So what do your parents do?” Aunt Rivky said softly.
I stared down at the white tabletop. “They suction Dani. Or put the tubes back in.” I hated it. I hated how Dani hated it, how he screamed and fought.
“Does Dani like it when they suction him?” Aunt Rivky’s voice was quiet. So quiet.
“No. He hates it.” The stinging in my eyes got stronger. “It’s hard for me to watch because he hates it so much.”
Aunt Rivky was almost whispering. “So why do they do it?” she asked. “If it causes Dani so much suffering to be suctioned… why do they keep on suctioning?”
“To keep him alive,” I answered, my eyes flashing. As if my parents wanted to torture Dani! As if! “Because even though he hates it, the suctioning helps him! It helps him breathe better! He’s more comfortable afterward!” I could see the numbers climbing back up, from 75 to 79 to 86 to 92 to 95.
“So why do they do it?” Aunt Rivky pressed.
“Because they love him!” I shouted. “Because they love him! They don’t want him to suffer!”
“But he doesn’t want them to.”
I leaped to my feet, the tears finally coming. “Because he’s a baby! He doesn’t understand! He doesn’t know that it’s best for him to be suctioned, even when it’s painful and hard!”
Aunt Rivky gazed at me silently. Tears coursed down my cheeks.
Did she say anything? Or was it my own voice, coming from somewhere deep inside me?
We’re Hashem’s small children. We don’t always understand. We often don’t understand. Sometimes we need “oxygen tubes”. Sometimes we need “suctioning”. It’s so hard. It hurts. Sometimes it hurts so, so much and we even try fight it, like my little Dani writhing and trying to escape my mother’s loving hands and the long suction hose and the oxygen tubes she holds. And she cries, and I cry, too, because I know it hurts. But Mommy continues to suction, to maneuver the tubes back into Dani’s nose.
Because she loves him.
I know that every single thing she does for him is because she loves him with all her heart and soul and wants him to be healthy and comfortable.
And I know that he’s just too small to understand.
And me… I know that Hashem loves me. Even when I’m in pain. I’m just too small to understand.
Names and details have been changed to protect privacy
(Originally featured in Mishpacha Jr., Issue 909)
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