I’m still alive..!

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It’s been 18 days since I last posted Hydrocephalus: Wow moments and leaving a legacy behind.

I am painfully aware that I haven’t put out another post since then and would like to apologise to you, my followers.   Life has gotten in the way but…in a good way.  I’m working on everything I wrote about in my last post and making sure I stay true to my mission in life…to leave a legacy behind and hopefully effect change.  Pretty soon, you’ll be visiting me at my new site and I’m super excited to share it with all of you and the rest of the world! (God willing…)

Aside from that, I have an exam, which I need to re-write next Saturday (4th of June), which has me a tad stressed as I haven’t found the time to do what I need to prepare for it fully.  On top of all that, I have fulltime work and family life, which all require my utmost attention and…now I feel like I’m just making excuses but hand on heart…it’s all true.

I am most thankful and happy to report that I am still managing to Stay afloat as my Hydrocephalus symptoms hasn’t given me any problems…touch wood!

All this makes me realise that life happens, and sometimes, it requires us to perform a juggling act of note.  Fortunately, I am passionate enough about this blog to see it through and promise – I won’t leave you hanging.

So this is me…signing out but not until I’ve personally told you – I’M STILL ALIVE..!

 

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Hydrocephalus: Who will take care of me when I can’t?

Serenity

A concern most people have…I’m sure. Something, which insurance companies prey on…and, in hindsight understandably so (I’m sure they would justify it with “it’s the risk we take at the cost of making our money”).  With that said though, no insurance company will touch you with a feather if they know you have a condition like Hydrocephalus…they could just as well have already signed your death certificate.

We’re all going to die right?  It’s a necessary part of life…but I digress…

I for one, have been thinking about it more and more. Before I was diagnosed with Hydrocephalus, in 2007, it was the furthest thing from my mind. As I get older and become more and more aware of the cognitive challenges I have, I have a fear rising inside of me. I left a country whose Government simply doesn’t look after its people. A country where my parents and grandmother still live…I fear for their well-being. It gets me thinking about myself…this new country I’m in. Will I really be better off?

I somehow don’t think so. Yes, it appears the government does look after the elderly in terms of benefits. But, will that “benefit” be enough to sustain me should I no longer be able to work and provide financially for myself? What happens when my money runs out? Would any amount of financial planning really be that beneficial especially since my date of death is unknown?

Some might even argue that the medical system is “good” and that you’ll be taken care of.  Having experienced the medical system, that may be true for someone who doesn’t have a (as I’ve been nicely told)”complicated condition” as me…I have no faith in the care here either.  More on that in another post…

These are morbid thoughts, I know.  But, as a friend told me, “one cannot help but have morbid thoughts when living with a chronic condition“.  Also, no amount of brushing it aside because of this fact, will change any of it.

I have a husband and, God willing, should he survive longer than me, will take care of me. Or will he?

I briefly touched on the topic with him, telling him about people in the Facebook groups I had read about, who either don’t/can’t work, work part-time, made job changes or have had to quit because of their Hydrocephalus. His response “Oh s***, looks like I’m going to have to work harder for longer and have everything rest on me“. Charming response, wouldn’t you say? Admittedly, it’s not quite the words I anticipated to hear. In fact, I know for sure, if the roles were reversed, my answer would not have come close to his.

In all fairness, I do wonder though…Is there some understanding I can gain from what he said, some perspective? If I were to put myself in his shoes, I guess he is justified…? It hurts to have heard him give such a response. And, as I am true to my nature, I analyzed it and justified the reasons behind his choice of words and came to the conclusion that “he didn’t mean it that way”. As usual, I camouflaged my response and just said, “Don’t worry…I’ll try to push myself harder and make sure I keep my job.  Mind over matter as my Grandfather used to say“. The truth of it though is, I don’t have any guarantees that things will work out that way.  Also, with this condition, it’s easier said than done ’cause quite frankly I AM NOT IN CONTROL OF HOW I FEEL  ON A DAILY BASIS.  

I told him that “I will try to figure it out and once I have a solution, I will share it with others who have Hydrocephalus…so they too can benefit“.

Truth be told, I don’t have the answers but…I do have a “backup plan” (well…sort of). Knowing that I have had to fight a few battles with my health issues, I realized that I might require some changes to be made. I am prepared to do what it takes to survive and provide for my family. If it means giving up the office job I have to pack shelves at the local store then so be it. I will not let my Hydrocephalus or cognitive challenges stand in the way of being a functional human being.

I am a strong-willed and independent woman.  This has sometimes been a “not so good” (though not bad) trait. However, it is the one thing that has seen me through some of the toughest situations. I believe this, together with a determination that is second to none, will get me to where I need to be.

So what if I end up giving up my office job? So what if it means I need to earn a little less? I believe that at this very moment in my life, I am giving the best of my ability to keep my kids happy, healthy, fed and in school. Their future is what I am here for. My only desire for them, is that they make a success of their lives so that they can take care of themselves when the time comes. I might not even need to put my plan into action…but the fact that I have thought about it, gives me some form of peace.  I have mentally prepared myself if nothing else.  More importantly, it gives me acceptance of not being able to change certain things…And, reminds me of the Serenity prayer hanging in my Grandmother’s living room.

I discussed the matter again with my husband later that day but only because he brought it up. He wanted to know if I would take care of him, should the need arise. (It showed me that I had hit a nerve with my question and that he had been giving it some thought). I had the chance to tell him: “Unlike your answer to my question, I would not hesitate to take care of you. No matter how bad it got…I would be there for you. Even if it meant I had to feed, dress or bathe you“. He got the message and apologized for his earlier response saying, “Of course I will take care of you. How could I not? You’re my wife“. I take some comfort in knowing that at some point (if need be), he will take care of me.  The point is, no one really knows what they’ll do when the time comes.  Circumstances at the time might dictate your response or reaction, regardless of your relationships AND despite what you say now.

With that said though, I pray that I may never need to be taken care of. But, I will trust that I am surrounded by people who love me enough to do what’s right.

Have you thought about it? Do you have some insight to offer?

 

 

Thank you for taking the time to read.

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How do I explain to her that I will not live forever…

Life
A few weeks ago, I was mindlessly watching something on TV…the name escapes me now but it was much like CSI.  In the end, some crazy guy shot and killed a teenage girl’s parents and little brother in front of her.  At the time, I didn’t realize that my 5-year old daughter and her 11-year old brother were watching as well.

You see, they had been playing cards so I know they weren’t really paying attention.  However, as the story unfolded, they turned their attention toward the TV.  My daughter asked why the man did that and I heard something else in the sound of her voice, which I didn’t like.  I told her that he was just a naughty and bad man.  She tried to process it and started crying…it tugged at my heart.  I called her over to me and immediately felt stupid for letting her see it (I was too engrossed).

What if some bad man comes here and shoots you!?”  She asked sobbing…I comforted her as best I could and told her that it was just a story and wasn’t real but nothing I said would get through to her.  The damage had been done.  I can’t take that back and yet, I know that’s life…death that is, it’s a big part of life.

In time, she got over it but she’s been very concerned about me dying, on more than one occasion.  She’ll say things like “I don’t want you to die” or “I wish we could stay together for ever“.  The thought of it leaves me feeling a bit helpless.  The thought of dying and leaving her behind, that is.

I’ve always been one to say that death doesn’t scare me.  If it is God’s will that I be taken, then so be it…I accept that.  However, ever since my daughter was born, I feel powerless to the guilt of leaving her motherless through death.  I know I could be a better mother to her on so many levels but the unconditional love this child shows toward me…lets just say it leaves me speechless.  She teaches me so many lessons on a daily basis.

We love as hard as we fight and honestly, I wouldn’t have it any other way…(well, maybe sometimes).  She’s a highly spirited child, opinionated and stubborn as hell, some of that I know she gets from me.  She’ll be a strong woman one day, no doubt.

The question remains though, how do I explain to her that I will not live forever..?  If there were a button I could press to make death disappear from Life’s equation, I would do so in an instant…just for her.

If only I could live forever and protect her little heart from any anguish or pain my inevitable death would cause her…I would.  Obviously, I don’t want my daughter to feel any kind of pain or heartache that comes with life lessons of death or disappointment…but I can’t.

Negotiating a date and time would also be great just so I can prepare her closer to the time.  But I know that is a luxury afforded to no-one.

Think about it…I’m sure no (majority of) parent talks about dying with their kids…at least not at the age of 5.  Honestly speaking, it’s not a pleasant thing to face or think about.  How can you possibly tell a loved one that the void they will feel at the loss of you…will be OK?  Most of us have been touched by death in some way or another, we know what that feels like.  There is no way to explain it away, you can’t sugarcoat it.  However, I feel sometimes that if I don’t talk about it with her, I would have failed her by not telling her to expect it to happen.  It’s a tricky thing for me…either way, I want to protect her at all cost.

I read a poster some time back with a young woman staring out into the distance, it read “My mother never prepared me for life without her“.  I don’t think I want to be that mother either…I suppose I could always keep on praying and being thankful for yet another day that I get to breathe and be with her.  Another day where her little heart will be intact and all will be well with her world, simply because I am still in it.  And, when the time comes, we’ll have the talk and somehow, she will reach a level of understanding that this is the way of life.  I will teach her to be grounded in her faith so she has something to cling to when the world becomes a scary place and I will teach her to love and be loved…to comfort and to be comforted as the need arises. Being the best person she can be…even if that means – without me.

Thank you for taking the time to read.

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I would love to hear from you…