We found a disabled parking space, close to the promenade. We sat for a moment watching families walk up and down the promenade stopping only to check that the sand had finally dried off their feet. We climbed out of the car […]
His school have been using it for a little while now. There’s talk of us getting our own one soon, but for now we have the use of the schools one over the Summer break. It’s an odd shape. It can’t be […]
My experience in writing such pieces has taught me that the facts and figures are uninteresting to the general public, it is the people that strike a cord with them.
Sometimes when I talk about the things he used to do, people who know him now can’t comprehend that the same boy sitting in the wheelchair in front of them once told a woman who was staring at him to ‘F*uck off”!
There are so many great things about being a parent to a child like Ethan. People tend to not know that. They tend to think or imagine our lives as sad ones or a life full of struggles and battles; while on […]
His hand reached up.Gently I held it.I bent down to his eye level.Quickly his other hand smashed into the side of my face.His boot cracked repeatedly off my shin bone. For a guy who stood at 4 ft 0 inches he had […]
Tears, Tempers and Tantrums. Oh man, eh? If there was one simple trick to help avoid these behaviours wouldn’t parenting be a whole lot easier?! Sadly, there is not one trick- there isn’t even a step by step guide,there is however; luck,patience, […]
It is estimated that there are 350 million people worldwide living with a rare disease. That is the only statistic I will share with you today. I have written many, many times about the statistics around having a rare disease. I have […]
The future is something many parents worry about; regardless of your child’s abilities, we all worry about the future. The future is something most parents almost dream about; we are always thinking or wondering or planning what life will be like when […]
I read all these wonderful families stories about how much tube feeding has helped their children.Some children need the tube placed just for a short time, while others need it for longer or even for life. My son falls into the less […]
