Four days ago I was “fine” and now, each day closer to the next feels like an eternity as I will time to pass quicker. Time, something which feels like a luxury, a priceless possession I wish I had more control of, with a dash of patience. I’m at...
Hydrocephalus
Hydrocephalus, the condition that will make you work for it…
It’s not enough that you or your loved one has been diagnosed with this condition, at least that’s the way I see it, from “life’s” point of view. (“Life” being whatever it is that controls all the “bad” that people endure). It’s not necessarily a death sentence but it...
“A little Angel just got (their) wings”
A child dying will grab anyone’s attention, no matter the circumstances. It’s not to say that adults are less important but there’s just a definitive difference. In the Hydro community I know it affects each and every one of us, without a doubt. I find that it affects me...
Hydrocephalus: Have you become complacent?
When you live with a condition like Hydrocephalus and, have the challenges that come with it, it’s easy to reach a level of complacency. However, the kind of challenges I’m talking about don’t include the physical but more the medical care (specifically the lack thereof). So many of us...
People with Hydrocephalus look no different to you…
We walk among you, have hopes, dreams and fears. We are employees, parents, children, students, adults, senior citizens and more. Anyone at any age can receive their diagnosis – we are not all born with it. But, those who are, experience their first brain surgery hours, even days, after...
Who’s with me..?
Something has got to be said for surviving a milestone with this condition. However, it’s not just about surviving another week, month or year without surgery because that in itself is a priceless gift (any Hydro Warrior would understand and acknowledge it). I for one, have literally survived… Without...
When your body requires you to rest…
I’m not the kind of person who likes being told what to do. In fact, the more independent and self-sufficient I am, the better. My family know, despite their protests or advice when it comes to the way something needs to be done, I’ll still do what and how...
Happy Mothers Day
Mothers day brings with it so many thoughts. Mostly there’s a feeling of thankfulness and appreciation. Last year I focussed on mothers of Hydro babies who go above and beyond the calling. This year, I turn the focus inward in the hope that I am not alone in any...
Hydrocephalus: Yeah…I’m talking to you!
Wherever I was in my life when you appeared (like a phantom) on the scene, doesn’t even matter anymore. Whatever was going on, whatever I regarded as important at the time…overtaken by the enormity of you. You threw me for a loop and left me spinning aimlessly, wandering on...
Inside a Neurosurgeons head…
I didn’t actually mean that literally 🙂 I just finished reading “Do no harm” by Henry Marsh a little while back. A book, written from the perspective and view of a Neurosurgeon providing some insight to its reader, on what its like to be on the other side. Something attracted...