Hydrocephalus:  What is the right frame of mind?

Hydrocephalus: What is the right frame of mind?

This question pertains just as much to someone who has recently been diagnosed with Hydrocephalus as it does to someone facing brain surgery, which is never easy.

For me personally, it doesn’t matter that people say one procedure is “not as bad” as the next, it doesn’t stop me going on the rollercoaster ride once it starts.  Experience has taught me to never take any of it for granted.  It has, in fact, taught me to go into these situations as prepared for the worst as I can be.  Feelings of fear and anxiety are “normal“, something I’ve been reminded of more than once over the last couple of days.

I almost feel like I need to be the strong person I always am, despite what I need to face at any given time.  But, it’s tiring…and, that is why I’m allowing myself to feel and act as naturally as my body, mind and soul requires me to be right now.  Be that weak, needy, strong, etc.  I’m saying it’s OK.

I’ve been going through different emotions over the last couple of weeks since all this Hydro drama started (again):

  1. Fear and anxiety (We’ve already covered this one…it’s “normal”)
  2. Sleepless nights (I hate the 3 am wake up call and then struggling to fall asleep 2 hours later – zombie apocalypse)
  3. Worry (Yes I know, there’s no point)
  4. Withdrawing like a tortoise into its shell, while trying to figure out how to deal with all that’s going on, from everything and anything around me (I apologise to my family who probably feels this more than others)
  5. Saying, “Ah, f*** it!” (Because the realisation hits me that I don’t have control over any of it)
  6. Acceptance and peace (Whatever must be, will be.  And, I’m OK with that regardless of the outcome)

See the thing is, I only came to the realisation of why I’ve been feeling this strongly, a short while ago.  Becoming a mother meant that I would fight to the death to ensure the protection of my children.  This is why I keep going back to the doctors despite their lack of care.  I know that my children need their mother and there’s nothing I wouldn’t do for them.  Even if it means agreeing to brain surgery.

Talking to a colleague the other day, he pointed out the risk of not having the surgery done (Something I undoubtedly understand better than him but he can relate, to the risk aspect, being an IT CyberSecurity consultant).  As an example, he has an issue with his finger which keeps “locking up” and will eventually need surgery to fix it.  He’s been putting it off though.  When I questioned the risk factor, in each of our situations, he said that his risk is possibly losing the use of his hand.  My risk is possibly brain damage or death – IF there’s really a problem with my ETV closing.  Looking at it that way, you can’t compare the two risks as they are leagues apart but, the point was made and I got it.

The tricky part is, we (The surgeon and I) don’t know for sure that my ETV is closing, at this stage and quite frankly we may not know that at the end of the ICP Monitoring either.  But, given the risk of not doing this surgery vs going through with it, the answer is quite clear on what I NEED to do.  Yes, for myself but more importantly as a mother, I’m doing it for my children.

I’d like to see my daughter grow up into the strong-willed, independent woman (traits she already displays), that she is destined to be.  And, help guide her with some of life’s more difficult decisions.  To see my boys grow into young men and even to meet the pug my eldest is intent on having one day.

When it comes to getting into the “right frame of mind“, nobody can tell you what that means for you because what’s right for them is not necessarily right for you.  I’ve had so many people say “I could never do what you’re doing, you’re so brave” or “I don’t know how I would cope with all of this” or “I don’t know how you do it”.  Well, when you put things into perspective for yourself, you’ll be surprised what you’ll do when the time comes.

Life happens to all of us at one time or another…  We are all different and handle life’s lemons the same way.  If it takes you a few steps before you get to acceptance and peace, then so be it.

As for me, right now, I’m the most selfish I’ve ever been and thinking purely about what I need to get through the next few days.  Beyond surgery…it’s just too far to think about right now.

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