Looking back now, I can pinpoint the exact moment I knew I was strong enough to be Ethan’s mammy.

I remember going to my brothers flat after our visit with the doctor. I just sat and cried. He didn’t know what to do. Ethan was running around making car noises laughing. D must have explained it to my brother , I know I didn’t.

I sat and watched Ethan. He was now running with his arms wide open singing “I’m an air plane ” He stopped for a second, smiled at me and told me he loved me. I swallowed hard, forcing a smile right back at him. I closed my eyes. I could hear my brother raising his voice and D trying to calm him.

I could hear Ethans heavy breathing , I felt his little curled fingers pat my head.” Ahh it ok mommy” , “It’s me Ethan here” he planted a wet kiss firmly on my lips. I opened my eyes . His fingers came up to wipe my eyes. I closed them again, trying to make the tears stop. ” Ahhh mommy, no cry” he sat on my lap. I wrapped my arms tightly around my then 6 year old boy. He squirmed. I repeated into his ear “Mommy loves Ethan, mommy loves Ethan, mommy loves Ethan”. “You silly mommy” he giggled. I opened my eyes. There he was looking right back at me with every tooth in his mouth on show. ” You silly mommy”. “I am” I smiled.

There in my brothers flat my whole world sat on my lap calling me silly. He was perfect. Beautiful full lips, rosy round cheeks and wow, his eyes, the bluest largest eyes I had ever seen, my perfect boy- Ethan- who happened to have a rare genetic syndrome called Hunter Syndrome.

It was that moment, that second I knew I had to get through this.

My brother handed me a phone, with tears in his eyes he whispered ” It’s mam”.


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