You’re probably wondering if I’ve completely lost my mind or how I can say that, well that’s because it’s only one of the emotions I feel right now – along with fear and anxiety. It may not be an ETV or Shunt surgery but it’s brain surgery nonetheless. The...
Sometimes all you need is 1 person
Having Hydrocephalus has certainly taught me some valuable life lessons. Some…more obvious than others. The last few weeks have felt like an unnervingly familiar road which I walked a few years back. History repeating itself, with doctors who outright refuse to help me BUT there’s 1 (FINALLY! – it...
Do you have a backup plan?
My experiences over the last while have certainly not been unique to me (Confirmed by the comments and messages I’ve received). This past week, I have had various reactions consisting of outbursts and crying when I’m alone because of sheer helplessness and more. I regrouped and put my thinking...
The “protocol” ED is missing when it comes to Hydrocephalus
Just an update, since my last post, with me ending up at the ED, despite my internal protests and reservations that nothing would be done…(I always give a situation the benefit of the doubt). But alas… There were a few things that stood out for me this weekend: Calling to...
Time…How a day can seem like an eternity
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, 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...