When a Man Called My Son With Hunter Syndrome a 'That'

“Can we just make sure he has a room to himself, please,” I called after the nurse as she turned on her heels and left the waiting area.

I could feel their eyes on me as one parent whispered to the other. Ethan was now trying to knock over the huge goldfish tank. I didn’t have time to eyeball them back. I bent down to Ethan. “Room ready soon,” I told him as he began to kick and scream. I tried all the distraction tools, the usual treats and promises, but he was having none of it.

The tears came fast as his demands grew. “I go home,” he roared as he pushed me hard against the tank. She returned at that moment. “Room is ready for…” she glanced at her clipboard. “Ethan,” she finally said. “Here!” I stood up, “Come on baby, we go see TV.” I smiled at him, hoping he’d happily come along. No such luck. I threw his bag over my shoulder and dragged him down the long, busy corridor. “Nooooo fug off,” he squealed as we reached our room.

“Um, sorry but um… this is a ward,” I said, looking at her. “It is,” she looked at me, then at Ethan, who was now trying to gnaw his way free from my grip. “We, I mean, he can’t do a shared room, a ward, I mean,” I almost apologized. The other parents in the ward were now watching Ethan and me and this nurse. “Well, today you’ll have to. Sure, you’re only here for four or five hours, it’ll be grand.” My face flushed. “But, sorry, but… he can’t and won’t settle in a busy ward. You’ll have no hope of getting his infusion done.” All eyes were now on me. She took off her glasses and looked at Ethan, who was now wailing like a banshee and kicking my leg. I didn’t flinch. I didn’t advert my eyes from hers. “Today is too busy. He’ll have to stay here or you’ll have to wait longer, it’s up to you.” She stood firm.

I threw his bag on the bed and brushed passed her while Ethan head-butted her side. “Can you let Susan know we’re here then,” I said, without looking at her. I was annoyed. Ethan was annoyed. The whole bloody ward was annoyed. She left.

Ethan screamed and kicked as I tried to load up his portable DVD player as quickly as I could while dodging his punches. “Excuse me…” his voice was deep but quiet. I looked up. At the foot of Ethan’s bed stood a man I’d never seen before. “Sorry now, but my daughter is just back from getting the appendix out.” He nodded toward a small girl across from Ethan’s bed. I looked over then back at him. “Oh.” I stood up while Ethan was calmer now, throwing his DVDs at my back and laughing.

“You need to keep that under control.” He nodded at Ethan.

My heart literally stopped. Did he just refer to my son as a “that“? My mind raced. “What?” I asked, my voice beginning to wobble. “You heard me. Control that.” He pointed at Ethan this time. I froze. I didn’t have a clue how to respond. He walked back over to his child’s bedside and closed his curtain. My eyes stung as Ethan laughed and laughed, very much like a hyena. My legs turned to jelly and my lip wobbled while I told myself over and over, Get a grip, you can’t handle him until you handle you. I took some deep breaths.

The curtain beside Ethan’s bed slowly pulled open. There was a woman standing there looking at me. “Are you OK, pet?” she gently asked. I nodded. I didn’t look at her. I was afraid that if her face matched the kindness in her voice, I’d break. Ethan was oblivious to the scene which unfolded in front of him and was happily singing along with Mickey Mouse.

The nurse came back in. “The guys are ready now to put the cannula in.” I stood up. The woman was still standing there. I smiled at her as I took Ethan’s hand in mine. “Everything OK?” the nurse asked as I faced her. I nodded. We left to get Ethan cannulated and returned 25 minutes later. The man’s curtain was open.

I sat a very upset Ethan down and handed him a bar while telling him, “Susan will be back next week.” Susan, his nurse for the past six years, was sick today. Susan, who saw us every single week, had to pick this week to be sick. “FUG OFFF FUG OFF,” he roared as I tried to reload the unreliable DVD player.

“Jesus. Can you not control him?” The dad was standing at the end of the bed, again. “How long are you going to be here for? Are there no drugs you can shut him up with?” he asked with venom in his voice. “F**king retard,” he mumbled as he walked away.

I cried. I wish I hadn’t. I wish I could tell you all how I stood up to him, for my son, but that would be a lie. I sat on Ethan’s bed and cried. I cried for Ethan, I cried for me and I cried for how nasty people can really be… yet he, that excuse of a human, was given a perfectly healthy child, while I’d been given a terminally ill child. I cried more when I thought about how unfair life is.

The kind lady was nowhere to be seen, but the other parents there just watched and listened, not one of them saying anything.

Suddenly I heard my mother’s voice in my head, telling me to stand up to his “kind,” advice she’d given us years ago, when neighborhood kids would call my brother a “handicapped” or a “retard.”

Taking a deep breath, I walked over to his child’s bed, pulled back his curtain and calmly asked, “What did you call my son?” My face was bright red, I’m pretty sure of it. “Nothing,” he responded, looking up at me while his child slept. I wasn’t expecting him to deny it.

“I heard you.” I stared at him. He sat straighter in his chair.

“You need to control that over there and leave me here in peace.”

“Stop referring to my son as a that.” I didn’t miss a beat. He rolled his eyes. I could hear Ethan getting off his bed, I could hear him unsteadily coming toward me and I could feel everyone else listening. I lowered my voice. I’m sure I could’ve handled the whole thing better, but emotions and temper did get the better of me. “You, sir, are an a**hole, a very, very ignorant a**hole. I certainly hope you don’t teach your beautiful little girl how to be just like you.” I turned just in time to stop Ethan hitting her bed. “Come on, Ethie, let’s go and play on your bed.”

Ethan took my hand, then suddenly he stopped. I bent down and he gently kissed my forehead.

Maybe he understood how upset I was, or maybe he just wanted more sweets… I don’t know. “Blove you,” he smiled as I looked into his eyes. He turned to the man and roared “NOT YOU.” We walked over to his bed, where we stayed for six painstakingly long hours while he received his ERT.

The man didn’t bother us again.

I told the nurse as we left the whole story and why we need a private room every week, not just when Susan is there. “I’m sorry. The lady told me already and told me to give you this.” She handed me a piece of paper.

Later that night after I relived the day with my husband, D, I remembered the piece of paper. I took it out. There in black and white, she’d written, “You don’t have to be strong all the time, it’s OK to cry.” And so… I cried.

A version of this post originally appeared on GeraldineRenton.com.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

Want to help celebrate the human spirit? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.