Everyone's normal is different. Nearly 50,000 children and their family's, live with a life-shortening condition. There are many hidden stories, as people quietly live out their tough and precious 'normal'.
I know today is nearly over but it's the first day of Children's Hospice week so I wanted to say something. Being allowed to stay at a Children's Hospice, is one of those things no-one wants to be eligible for. There are lots of these 'clubs', small groups of people that deep down we don't want to be [...]
Life changes when you become a mum, even more so when your son has a disability. With any baby, normal run of the mill activities become calculated missions of precision and specialist equipment. Leaving the house takes two hours of planning and a boot-load of accessories. Going on holiday requires upsizing your car and is suddenly [...]
At the beginning of 2015, I wrote a blog about New Years and IEPs (Individual Education Plan), but it was never published, until now. 'We celebrated this New Years Eve with our family cooking and sitting around a fire in the garden. New Years Day is a mark in the sand. It is a point [...]
The glare of the theatre lights warmed my skin as my body shivered. The cesarean section was about to begin. Everyone was poised, ready to carry out their designated duties yet I felt inadequate and out of my depth. I’d been in this environment before but this was different. This time, I wasn’t a face amongst [...]
I confess, I lied. It was a blatant, bold and brash falsification of the truth. I claimed to be enjoying myself... but I wasn't.
The debate about the ‘Down Syndrome Blood Test’ is raging. Unfortunately, I think a lot of it fails to question whether any blood test can accurately measure the value of a life.
Some weeks feel big. Big emotions, big events, just big. When I told my husband I had found many reasons to cry that week, he kindly suggested I may be pre-menstrual. He currently still has his head but I’m not committing to anything long-term. The kids went back to school yesterday and aside from failing to do [...]
I don't find it easy seeing my shape change. My body feels as though it no longer belongs to me as I watch it expand. I'm startled when I see myself in the mirror but I don't need my reflection to tell me it's all different. My body has other ways of letting me know I'm in the [...]
Nine years ago today I woke cloaked by darkness and breastfed my firstborn son. Within a couple of hours we bundled our infant into his pushchair and headed towards the train station. We began a journey of Truth with Hope travelling alongside. Sam had an appointment in London for an MRI scan of his brain. Our [...]
