We are not faking…

We are not faking…

I read a post on Facebook the other day in one of the groups I belong to, that just angered me more than anything else. It wasn’t even the fact that there seems to be a general belief that people with Hydrocephalus are faking their symptoms.

It was reading a comment from a parent who said that their 5-year old was believed to be faking by their teacher. Reading further the symptoms of the child, I could relate very well and had full empathy for this little one. It’s not enough to say that because I’ve experienced it, I’ll have a better understanding. Because this is a dangerous condition…I can appreciate the consequences fully.

There are people in our children’s lives who need to act maturely and responsibly in certain situations and this particular condition warrants just that. All adults, parents, teachers, aunts, uncles, grandparents…the caretakers of little ones share the same responsibility.

Do you have any idea what it feels like when you have to lie in a dark room in the most excruciating pain imaginable because light affects the way you feel? Do you have any idea what it feels like to pray for death than have that scale of pain? Do you have any idea how helpless and scared we feel? There is only enough energy left in your body to keep breathing…nothing else!

And, this is only the tip of the iceberg!

Next time you are tempted to say someone with Hydrocephalus is faking…you better think damn hard about that before you open your pie hole!

I am an adult living with this condition and I can tell you…giving birth to 3 children does not even come close to the kind of pain I experience when my pressure is high. Not forgetting to mention the fear I live with on a daily basis. Also, a little kid has not reached the maturity level to deal with all of this yet (but they do)…they sure as hell don’t need you to make matters worse. With that said though, these little Hydro Warriors have learned skills of survival that a healthy adult could not even portray.

Finally, if they are “faking“, which I highly doubt, then let them be. Life sure hasn’t dealt them the best hand and they deserve a break…even if it is from ignorant uninformed people. If you have made this grave mistake…the least you can do is become informed and educate yourself a little more about Hydrocephalus and it’s symptoms.  I guarantee your next encounter will be that much more humane.  Have a read of my eBook – you might get some understanding of what we have to deal with.

In fact, there are many conditions, which cannot be seen with the naked eye.  People who endure pain and discomfort silently but bravely carry on and try to function as part of this society.  A little patience, compassion and mindfulness will go a long way…besides, you never know if or when life will deal you a dirty hand and the roles are reversed.

Patience

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!

6 Comments

  • Chelesani Moyo

    December 26, 2019 at 12:44 pm Reply

    My lil boy is 2 and a half years old. He was born with a host of conditions including hydrocephalus and encephalocele. I wonder how his future will be like. I feel scared about the future. But thanks so much for blogging about this hard journey. I thank you for helping us know what to expect as our boy grows. Strongs to all Hydro Warriors.

    • Skyewaters

      December 26, 2019 at 8:49 pm Reply

      I understand. I hope and pray that by the time he is older, he doesn’t go through any of this. I believe there is a disconnect in the care between adults and children. The best advice I can give you is what I blog about on this site.
      All the best to you and thanks for commenting 💙

  • Donna Sorensen

    December 25, 2019 at 10:01 am Reply

    I do have a comment to make what if certain people think your faking it about the memory loss, why can we remember some things and not others and why can we remember what has impacted us more then what hasn’t. My Family don’t get it and think i am using it as an excuse or think i am not being honest with them even though i cant remember a conversation or what was said in it at the time or after but then can remember much later the whole conversation like a tape recorder but then it goes again. Why does it happen and how do i get my family to understand it. As they say i am not being truthful and I remember it the way i remember it does that make sense. It is so Hurtful and Dam Frustrating you want to chew their faces off for accusing you of Lying, Can you please give me some good advise on this please from Donna Sorensen. Thank you so Much Its Donna. Please facebook me instead Skye as i dont get to my emails very often but I am coping a hard time with it at the moment and it is doing my head in.

    • Skyewaters

      December 26, 2019 at 10:32 am Reply

      I’m sorry others are causing you to feel this way. Hopefully my latest post helps you in this regard💙

      ‪https://skyewaters.com/hydrocephalus-shame-on-you/‬

  • Nic

    September 27, 2015 at 8:15 pm Reply

    Have had hydro since birth but only diagnosed at 19 for years told it was migraine and to cope with it – so went to uni and now teach full time 14 revisions and now 40 – just had a little one of my own – but by c-section and General as shunt stopped draining as she was taking up too much space! So ant compare pain of childbirth- completely relate to sitting in dark wanting to die though as head about to explode

    • skyewaters

      September 27, 2015 at 8:20 pm Reply

      Congrats on the birth of your little one! Yes, it certainly is not easy. You are one strong woman for having so many revisions. I pray it was your last and things get better for you. Thank you for your comment.

Leave a Reply to skyewaters Cancel reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.