They do walk amoung us…

“Can we just make sure he has a room to himself..please” I called after her 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 hadn’t 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.

“Am, sorry but am..this is a ward” I looked 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 apologised. The other parents in the ward were now watching me and Ethan and this nurse. “Well, today you’ll have to, sure you’re only here for 4 or 5 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, 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, brushed passed her ,while Ethan head butted her side, “Can you let S know we are here then” I said without looking at her. I was annoyed. Ethan was annoyed. The whole bloody ward were 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 Ethans bed stood a man I had never seen before. “Sorry now, but my daughter is just back from getting the appendix out..” he nodded towards a small girl across from Ethans bed, I looked over then back at him. “Oh” I stood up while Ethan was calmer now, throwing his DVD’s 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 began to wobble. “You heard me. Control that” he pointed at Ethan this time. I froze. I did not have a clue how to respond.

He walked back over to his childs bedside and closed his curtain.

My eyes stung as Ethan laughed and laughed, very much like a hyena. My legs turned to jelly, 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 Ethans 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;if her face matched the kindness in her voice that I would 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 flashed a smile at her as I took Ethans 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 mans curtain was open.

I sat a very upset Ethan down and handed him a bar, while telling him “S will be back next week”. S, his nurse for the past 6 years was sick today. S 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” he was standing at the end of the bed, again. “How long are ye 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 all how I stood up to him, for my son, but that would be a lie. I sat on Ethans bed and I 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 had 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 there were other parents there who just watched and listened, not one of them said anything.
Suddenly I heard my mothers voice in my head, telling me to stand up to his ‘kind‘; advice she had given us years ago, when neighbourhood kids would call my brother a ‘handicapped’ or a ‘retard’.

Taking a deep breath I walked over to his childs 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 looked 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 towards me and I could feel everyone else listening. I lowered my voice. I’m sure I could have handled the whole thing better but emotions and temper did get the better of me, “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 lets go and play on your bed” Ethan took my hand, suddenly he stopped. I bent down, 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 6 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 on. “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 D, I remembered the piece of paper. I took it out, there in black and white she had written “ You don’t have to be strong all the time, it’s ok to cry”.

And so… I cried.

4 comments

  1. Thats amazing! In school, I am starting speeches and i am doing Hunter’s Syndrome, If its okay with you I was wondering if i could add bits and peices of this into my speech,

    1. Sorry for the delay Dakota!!! Yes absolutely use whatever you would like! Please feel free to share the website too! Thank you x

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