The cold air blows through the concrete shed. It is just us in here. Still, I leave my mask around my face. I don’t want to be here, and I don’t want to have this experience. I think of my mother sitting […]
May for us has always been a month to promote awareness around Mucopolysaccharidosis (also known as MPS. I imagine because it’s pretty tricky to pronounce Mucopolysaccharidosis!)MPS Awareness Day is May the 15th. For years, I have tried to make it a ‘known’ […]
The morning sun paints the dining room, illuminating the bright yellow walls. I sit at the table with my freshly made cup of tea.My daily routine is so vastly different these days. Sometimes I am unsure what it is I should do […]
Summer dances over the horizon, Seven months have crawled by, Yet, seven months have sped away, I’m stuck in a sandpit of sorrow, Despite the seasons rolling by, Your smile, your laugh, your voice echoes, All the while the sun still rises […]
Why don’t we talk openly about the gut wrecthing loss of a child? The fact is we don’t want to burden, upset or shock, yes shock, those who care enough to ask, “How are you doing?”. I think we should talk about […]
One of the messages that seem to repeat in my inbox are about how the book has made it easier for parents to help their friends and family understand a little bit about thier life with a child who has extra needs.
Tomorrow my book ‘Ethan & Me’ will be officially on sale . I’m anxious. I have this nervous energy ; I feel like I am awaiting results of some test that I never knew I was taking! I hope people like it […]
Well, it has been awhile . I haven’t been writing as much as I normally would on here due to what I can only describe as life’s little way of refocusing your attention onto something else. 2020 – what a year for […]
I have visited these three centers and I honestly felt like Goldilocks- none felt right.
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 […]