The Day A Stranger Called My Son With Hunter Syndrome A ‘That’

Hospital ward

 

“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. The nurse returned at that moment. “Room is ready for…” she glanced at her clipboard. “Ethan,” she finally said. 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, this is a ward,” I said, looking at the nurse. “It is,” she said, looking 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, 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 avert 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 Melissa [not her real name] know we’re here then?” I asked, 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 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 her appendix out.” He nodded toward a small girl across from Ethan’s bed. I looked over then back at him. “Oh,” I said, standing up. Ethan was calmer now, throwing his DVDs at my back and laughing.

“You need to keep that under control,” he said, nodding 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. My legs turned to jelly and my lip wobbled while I told myself over and over to get a grip. You can’t handle him until you handle you, I reminded myself. I took some deep breaths.

The curtain beside Ethan’s bed slowly opened. 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 down. Ethan was oblivious to the scene unfolding in front of him – happily singing along with Mickey Mouse.

The nurse came back in. “The guys are ready to put the cannula in now.” 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.

Ethan was upset. I sat him down and handed him a bar telling him, “Melissa will be back next week.” Melissa, his nurse for the past six years, was sick today. Melissa, who saw us every single week, had to pick this week to be sick. “FUG OFF, FUG OFF,” he roared as I tried to reload the 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. “Fucking retard,” he mumbled as he walked away.

I cried. I wish I hadn’t. I wish I could tell you 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 be. 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 ‘handicap’ 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 said, staring at him. He sat up straighter in his chair.

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

“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’m sure I could’ve handled the whole thing better but emotions and temper got the better of me. I lowered my voice. “You, sir, are an asshole, a very, very ignorant asshole. 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,” I said. “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 (Enzyme Replacement Therapy). The man didn’t bother us again.

I told the nurse the whole story before we left and why we needed a private room every week, not just when Melissa was there. “I’m sorry,” she said. “The lady told me already and asked me to give you this.” She handed me a piece of paper.

Later that night, after reliving the day with my husband, 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.

About the Author

Geraldine Renton
Geraldine Renton lives in Galway city with her husband and three young sons. Life changed dramatically for Geraldine and her family back in 2008 when her eldest son, Ethan, was diagnosed with a life limiting condition known as Hunter Syndrome. Looking for an outlet for herself mainly, Geraldine began taking regular creative writing classes. In 2015, she wrote her first article which MummyPages published. Since then, she has continued to have her articles published all over the world. Geraldine writes openly and honestly about life with Ethan, often finding humour where others would neglect to look. You can also find plenty of Geraldine’s childhood stories throughout her website (http://geraldinerenton.com). In 2016 her blog “It’s Me & Ethan” won Best New Blog (2016), awarded by the Irish Bloggers Association. Geraldine continues to write regularly, not only on her own website but also for others. She is also writing a book! She has a non-fiction short story with ‘The One Million Project’, a global network of writers and illustrators coming together to publish a book in aid of different charities in the UK. The book is due for publication at the end of this year. When she’s not writing, Geraldine is a keen photographer and enjoys life with all her boys. She tells The Galway Eye she knows far too much about LEGO NINJAGO, Minecraft and how to burp on demand [*raises eyebrows* – Ed.] She possibly [no doubt about it – Ed.] has a Netflix addiction and recently became part of the Stream Team UK and Ireland for Netflix, running a Facebook page all about Netflix. Her motto in life is a lot like Ferris Bueller’s – enjoy the littlest of moments for they are the moments that make up a lifetime of memories.