Finding humour can be so very difficult; especially when you're walking the narrow squeaky corridors of Temple Street Hospital praying that your child isn't brought back to you on a breathing machine...again...because you don't think you've the strength or the belief to pray anymore...your heart can't take another uppercut ...your mind flashes to the other thought, that dark thought...you sweat, shake, fight for air as you picture the doctor telling you Hunter Syndrome and that damn narrow airway won this time...you scream I'm not ready while deep, deep inside you know you'll never, ever be ready...

Humour, no matter how much it relieves, can not be found on those lonely, cold corridors of Temple Street. I don't look for humour here; no; I look for hope...I look for time to speed up so I can see my Ethan come out of that OR with just an oxygen mask on with a monitor hanging off his thumb...

Often, very often he comes back passed out, no mask, with a monitor on his finger clutching his chosen teddy ...and I know ; we were lucky...I thank everyone in sight including the man upstairs and I pray that nothing goes wrong while we sit in the recovery room...waiting...and waiting...I move the monitor to his big toe because Ethan does not like that thing flashing at him on his finger...

Finding humour in our everyday life with Ethan is so very very easy.

We were walking from the children's ward in our local hospital after one of Ethans weekly ERT treatments. (ERT-Enzyme Replacement Therapy) ERT is a man made copy of the enzyme Ethan is missing, it is given to Ethan over a three and a half hour period, to the untrained eye, it looks like dialysis. It helps slow down the progression of Ethans syndrome, but is not a cure. It does nothing for Ethans brain, meaning the damage will continue. Ethan used to go to Dublin (Temple Street ) for over a year once a week, every week, then he spent three and a half years going to our local hospital to receive it, now he gets it at home...a massive difference to our family life. While we loved the staff at our local hospital, we certainly don't miss the ward at all!

Ethan is a hat man. Three things our boy loves in life; Teddy's, Telly and Hats! We had not a good day at the hospital. It began at 9am, it was now 6pm. Due to staff shortages, we were left waiting two hours before we even began his ERT. Ethan had, had enough at about 4pm when he decided he was leaving the hospital despite being hooked up to a machine. He had pulled his line out in a fit of temper which meant we had to put the line back in...trying to do that with Ethan being (rightly so) annoyed is a little like trying to reason with a baby when it's teething...it is pointless.

We did it, it took 6 of us but we did it and finished the infusion. Ethan and I were free to go home two hours later. We were walking out of the hospital grounds to where daddy was waiting with the car. Suddenly Ethans hat blew off his head and onto the road within the hospital grounds. He pulled his hand away and ran. I ran. He screamed at me to "FUG OFF". I caught up to him as he tried to pick up his hat. His fingers are very curled,making it difficult to pick up items.I rubbed his back and encouraged him to try again. His tongue stuck out as he tried again. I could see the frustration across his chubby face. "Ethie can do it" I softly added while I glanced around to see if any cars were coming. He picked it up. I cheered for him. "GO WAY" he roared. He threw the hat further down the road. He kicked and punched me as I dragged him off the road and back onto the path. A car slowly drove passed.

I bent down to him, knowing I was in the perfect position for a decent kick, "Mommy get hat" I placed my hand out in the hope he'd take it. He kicked, spat and bit me before agreeing to take my hand. We crossed onto the road and I picked up his hat, while he roared "FOOCK OFF".   

We were close to the gate now, I could see D in the car. "Look Ethie, there's daddy" I pointed. He laughed, "Daddy!" and just like that, the dark cloud was gone.

"Excuse me, but I couldn't help notice you back there" a woman approached me, from (apparently) out of nowhere.

"Me?" I stopped for a second and pointed to myself, unsure of this woman's ability to just appear!

"I was behind you while you were walking" she half laughed.

"Sorry, I didn't notice" I gave Ethans arm a little swing, in the hopes this woman wouldn't keep me long.

"I would just like to say that I am a behavioural therapist and I'm sorry, I know how this is going to sound, but I really feel you may need a little help with this little guy's.." she smiled down at Ethan, looking back up at me, she tilted her head and added "..behaviour" - now, it was not what she said, it was that stupid head tilt that got me, you know the one, the 'oh I feel so much pity for you' head tilt- I've seen these for years and for some reason they make my blood boil, 'I don't need or want your pity'; those words get lodged in my throat, each and every time I come across THE  head tilt. I'm not brave enough to tell people that.   

I took a deep breath and as I opened my mouth, Ethan roared "FUCK OFF GO HOME" . I knew he meant, he just wanted to go, he had had enough. But sometimes Ethan's timing is just perfect.

I laughed. I couldn't help it. Yes, I laughed right in her face as she turned a beautiful shade of red.

"Ok buddy" I patted his back as I turned to walk away, she mumbled "You will regret not taking my advice when he is a teenager with an ASBO".

I stopped short of the car while D got out to help Ethan into the car. I took two seconds to formulate my answer ; "One can live in hope" I smiled, knowing I had confused the behavioural therapist. She walked off ; shrugging her shoulders as she went.

"A good day?" D asked as I sat into the car.

"Well, we gave five members of staff a workout they were not expecting, we chased a hat that we threw off in a fit of temper which lead to mommy getting another unexpected workout and to top it all off, we have just confused the bejaysus out of a behavioural therapist" I laughed.

"So, Ethan pulled the line out I take it, had a meltdown perhaps two and you'll have to tell me what you did to a therapist, was it just you or a team effort?" D giggled.

"Team,obviously" I turned to Ethan, "High five bud?"

"Fug off" he looked out the window.

"Yep, Ethie, you've summed it up perfectly" I smiled as we waved goodbye to the hospital for another week.

Kindly submitted by Ger Renton, who will be keeping us up to date on her crazy family life with Ethan & co.
Follow her on facebook at  "It's me Ethan" and check out her amazing blog at bloggeraldinerenton.com