I knew nothing of medical trials until 2008, when Ethan was diagnosed . I knew nothing about taking part in any such trial until we were offered the chance to in 2010. Medical trials aren’t for the light hearted nor are they […]
My dream is to write a book. I never really thought it could be a possibility until I began writing my blog a year ago. Writing was something I always enjoyed, more so in Secondary school as part of our cirriculum was […]
We sat in our back garden, the sun shining high above us. Each of us savouring our ice pops. D and I watched as Ethan had finished his and was now on the hunt for “Ice cream”. I handed him a big […]
Ain’t dictators…sorry, toddlers I mean, very cute, as in cute like little foxes… always up to something some might even say they are cunning or maybe that’s just my dictator? BANG. “Mammmieeeeeeee” Of course I jumped like a mother lion […]
My 11 year old son has had two holidays in his lifetime. Neither holiday was one any parent would like to go on or any sibling would really comprehend. One was a Make-A-Wish trip for his bigger brother, Ethan and the other […]
When you’re thrown into the world of ‘syndrome’ or any disability; you search for your kin, your community. There is something inside you that forces you to connect with those who live with the same syndrome, they are the people you […]
It is never easy. It is never as simple as let’s ‘just go’. I often envy the pictures I see of families having fun at a local festivals, especially in the Summer months. I feel guilty too, that I just can’t […]
“Pee pee in the potty” I clapped my hands and kicked out my foot. My husband laughed. “Pee pee in the potty” I repeated, ignoring my husband D, who was pretending to video me. Ignore him Ger, this worked for the […]
I have come up with a plan on how to survive summer, which I hope others may find helpful! The players: – Ethan who has Hunter Syndrome and is 14. – J, who has ADHD and is 11. – Dictator (toddler) D, […]
We are standing on the edge. The wind is howling…I can feel the wind pushing and shoving us…he is quiet comfortable, standing with his arms folded across his slim chest almost laughing at his father and I . Yes folks, we are […]
