Hydrocephalus: Rest In Peace Josh and Rise In Glory

Hydrocephalus: Rest In Peace Josh and Rise In Glory

I’ve been known to get quite “emotional” about things, it’s in my DNA, something I accept, the older I get.  It’s what defines me…

Aside from this, I carry my heart on my sleeve and feel the pain or joy of others.  I think this must be why it’s so hard being Skyewaters sometimes.  Hydro warriors all over the world are fighting a battle unknown to most people.

My body physically reacts with anxiety when one of our Hydro family members faces another brain operation.  More so, my soul hurts at the loss of one of our own…young, old and in-between.

Hydrocephalus is a lonely condition, it can isolate you from not only the rest of the world but, also those closest to you.  This is probably one of the reasons why I refer to others with this condition as family.  They understand your pain, the medical terminology and all that comes with it – the triumphs, the joys, the fear, the sadness, more importantly, the reality of it all.

We have lost so many (and continue to do so), to this incurable condition and yet, those of us left behind, we continue to fight.

Last night, we lost Joshua Gourlay, one of the bravest people I know.  How he managed to endure over 100 brain surgeries, is beyond my own understanding…

When the doctors sent him home last week because there was nothing more they could do for him, I felt deflated.  And yet, the last few days I struggled with the situation more and more.  I even started thinking, “Surely this must be something God can fix…“.  The infection he developed in his brain, had returned after a course of antibiotics.  It had spread to his Gallbladder where his latest shunt was led to.  (He had too much scar tissue in his abdomen, with not many options left open to his surgeon).  Despite the operation being successful, nothing could have predicted the infection causing the havoc it did.

I sometimes wonder, when we pray for someone to get better, for relief from the pain or discomfort they are in, what are we actually praying for? I know I just wanted Josh better and not to have to endure further brain surgery.  For the effects, his lifelong Hydro journey has had on his family, to stop.  I prayed that Hydrocephalus would give him a break and, leave him be…

There are so many of us who don’t require as many surgeries as Josh had and yet, we are “fine”.  Why couldn’t he just be like some of us..?  Like me..?  (I’ve only ever had 5 surgeries, nothing in comparison)

I would have swopped places with him in a heartbeat or endured half the surgeries he had, if it would make a difference.  (I know the answer to that).

My heart is heavy today because I feel for his family, his mother Nicky who walked this journey with him.  Who knew when he needed help even when he didn’t, that’s not an easy task.  I have the utmost respect for her.  And, his family who watched him endure all this, over his lifetime.

But…I have to believe that Josh is now free from all of the earthly challenges inflicted on him.  I don’t for one minute believe his life has been in vain.  To have met him has been such a blessing.  Sharing a laugh, getting to know him and being privy to his wicked sense of humour… Not to mention his fiery spirit when he wanted to get his point across!

So, if I’m acting on emotion writing this post, then so be it.  My emotions are mixed right now:

  • Sadness at the loss of life.
  • Anger that this invisible condition doesn’t have better, long-lasting treatment options.
  • Concern for myself and anyone else living with this condition.
  • Relief at the knowledge that he won’t have to endure any more pain and discomfort.
  • Thankful because I had the chance to meet my Hydro brother face-to-face.
  • Gratitude for the lessons he left behind and the way he touched my life.

Before I left his bedside last week, he said “I want to see you again…”, I told him he would, even though it didn’t feel like it to me.

Nonetheless, I meant it.

I may not physically see him in this life again but, I know I will when my eyes close on this world.  Who knows, we may even get to have that fish and chips while overlooking the ocean, something we never had a chance to do…

This thought comforts me…

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus (Philippians 4:6–7)”.

Published by Skyewaters

I blog about Hydrocephalus to give a voice to the millions (if not billions) of people around the world with this condition NOT disease.  As much as these experiences are unique to me and my family, I’m sure others have experienced it too.  My aim…to shine a light on it and raise awareness – simple and challenging at the same time but worth it!

8 Comments

  • ALISHA

    March 30, 2019 at 11:39 am Reply

    I GOT HYDRO MY SELF IM 36 I DIDENT KNOW U CAN DIE

    • Skyewaters

      March 30, 2019 at 8:07 pm Reply

      It’s an incurable condition which can be fatal if left untreated or if complications arise.
      Unfortunately, this is the reality we all face. Best advice I can offer, know your body, know your condition even better. Knowledge is power and prepares you for whatever may come your way 💙

  • Kelleen Windsor

    March 30, 2019 at 3:02 am Reply

    As a mother of a hydro warrior son.. The loss of Joshua..even prior to him gaining his wings has affected me so deeply…i fell so in love with him when o met him and the last visit at hospital his last words to me were “I love you” ..i knew I wouldn’t see him again…
    The first day I visited him..my beautiful son…hydro warrior…master of disquise..met him too..they shook hands and Joshua saw my son as a hero..we all talked about our favourite football team . The Brisbane broncos..
    I knew this meeting my son had with Joshua had a massive affect on him. .Although he never spoke a word of it as my son does…my silent superman I call him…although looking at Ben he seems to be in perfect health as you do Skye Waters …he has endured 40 brain surgeries..its incredible how the number of brain surgeries is a highlight amongst us..i think it’s because it’s just crazy how the world does not recognise the cruelty of what hydrocephalus creates..
    With my heart on my sleeve last night I again tried to get through to my silent superman that what has just happened to Joshua is going to happen to him if we don’t do all we can to save his shunt systems and his neurosurgeon has made it very clear he is inoperable and god help him when these shunt systems fail again as there is nowhere to place another shunt tube in his severely damaged ventricles..and he must have two shunt tubes to drain the CSF from his collapsed…occulated ventricles and the 2 brain surgeries within a few days last year..his neurosurgeon had a hell time trying to place a shunt tube into his peritoneal and he doubts he will get another one in again..so “make the most of this shunt system Ben..because when they fail..and we all know failure is inevitable..its all over” ..these words never leave my head as hydrocephalus never leaves my head…
    I saw the tears in my silent superman’s eyes as he fought them off last night..pleading to him how we must do all possible to save his shunts…this is the reality of where he is at…not that one person in our lives takes notice of believes that..not one…just me. .His mother…the pain is overwhelming…so deeply lonesome…this is hydrocephalus. RIP our beautiful Joshua…all my love to his family…my heart is with his mother… I am truly lost and so afraid…. Love to you my friend Skye Waters..you are also in my heart and prayers as all hydro warriors snd their families are you 💖💖💖 🙏 🙏🙏

    • Skyewaters

      March 30, 2019 at 3:08 am Reply

      I know exactly what you mean Kelleen. I look forward to meeting you and Ben, hopefully sooner rather than later.
      As a mother, I think you are doing the right thing and should never let others stop you. We aren’t all as vocal, nor do we like the attention, something I understand fully. Ben is lucky to have you as his advocate and voice.
      I pray his shunts just keep doing the best they can for him🙏🏼💙

  • Philip Mastromonico

    March 29, 2019 at 2:34 pm Reply

    Skye, the greatest issue that sticks in my craw regarding hydrocephalus is that docs do not thoroughly advise prospective parents on all the ramifications of hydrocephalus so they may make an informed decision.

    • Skyewaters

      March 30, 2019 at 1:32 am Reply

      True. But, I think in this case, no one could have anticipated the end result. It’s life I suppose…

  • Karen DeBonis

    March 29, 2019 at 11:04 am Reply

    100 surgeries – I can’t even imagine. Although I didn’t know Joshua, my heart is heavy. Thanks for this tribute to a fellow warrior.

    • Skyewaters

      March 30, 2019 at 1:30 am Reply

      I know, right? Thank you Karen 💙

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