Always the way

in #health6 years ago

This is kind of an update post on the condition of my daughter since it has dominated a lot of my posts lately and many people have asked the situation. She is home now and is doing okay but, we don't really know what has caused it yet. She was meant to have an MRI on her head since the hyperinsulinism testing turned up nothing of consequence.

I was meant to be training in another city today but cancelled for the MRI as due to her age, they would have to put her under anesthetic to stop her moving. The scan scheduled was 45 minutes long which I think its due to the accuracy required to image the brain. I wasn't going to be out of the city for it. Unfortunately though, the MRI was postponed as my daughter now has a fever and they can't anesthetize her which means, my most financially important day of the month, got cancelled for nothing. Always the way, isn't it?

It is good to have her home though.

Even though the healthcare itself is mostly covered, it is all of these little hiccups to scheduling around work that really cost. When she was born, it was the same thing as she was rushed to the ICU and spent 12 days there. Those 12 days happened to be in the middle of a time when courses for the next year were being finalized which meant, my yearly salary was effectively cut by ~20%

Then, the next year was filled with complication after problem between my wife and daughter and of course, this required a great deal of energy on my part to cover the home situation and still manage my business to be able to cover the endless stream of costs big and small that arrived. It all takes a toll on the mind, body and of course, how one experiences the world.

Until Saturday morning, my wife and I were starting to become a little more confident that we were heading in the right direction but now, we are back to the anxiety of not knowing where we stand and what directions we have available to us to move. Even the MRI is a problem no matter the result. If they find nothing, we know more but are still in the dark, if they find something though...

Being prepared for all of these things is nearly impossible to do but I think overall, we have managed it relatively well considering our limited experience and resources. The price we have paid at every level of our life has been quite extreme considering but, we are alive. That is something at this stage.

There are much larger things at stake in this world that Steem stake but, this is also why I take things quite seriously here, as I see that there is a chance to limit the negative effects of what gets thrown at us and perhaps be able help build the skills and resources to be more prepared than without it. This is not just for me though, no one should have to face this endless crush as Always the way just keeps happening to too many people.

It is frustrating, it is physically and mentally wearing and, I get very, very tired but, what choice is there in this life but to keep trying to do one's best? And then hope; that someday, the tides will turn, the pendulum will swing and everything will be okay. The human condition is not one designed for pleasure, it is engineered for overcoming pain.

For now though, it is nice to be able to hear my daughter, even though it is the voice of an irritated and sick toddler. Parents often wish for a little peace and quiet but, do they really know what they are asking for?

Hopefully, my next post will be complaining about Steem again.

Taraz
[ a Steem original ]

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Hi Taraz. Sorry you are no closer to sorting it. Nothing goes according to plan. Hopefully you can somehow catch up on the work and money missed. I understand your frustrations. When you are complaining about Steemit we know you are back to normal.

When you are complaining about Steemit we know you are back to normal.

Probably true. ;)

Since I can't afford retail therapy, Steem therapy will have to do. =)

Hopefully, my next post will be complaining about Steem again.

This reminds me of a dark period in my life where my mother was very ill and I was home taking care of her next to finishing my studies, working 3 jobs, etcetera.

There was this song on the radio "Why is my life so boring!", and at some point, when the awful period was still going strong but we had sort of decided to add some humor to it, my mum and I just looked at each other: "I wish for the days life is boring again!"

I wish you and your family health. If all else is zero, let that one be a 100%.

<3

We need to set limits on what we wish for so there is only upside possible.

Hi there, Epictetus.

The things in our control are by nature free, unrestrained, unhindered; but those not in our control are weak, slavish, restrained, belonging to others. Remember, then, that if you suppose that things which are slavish by nature are also free, and that what belongs to others is your own, then you will be hindered. You will lament, you will be disturbed, and you will find fault both with gods and men. But if you suppose that only to be your own which is your own, and what belongs to others such as it really is, then no one will ever compel you or restrain you. Further, you will find fault with no one or accuse no one. You will do nothing against your will. No one will hurt you, you will have no enemies, and you not be harmed.

I do, however, wish for the same for you and your family as soyrosa, whether it is in my control or not.

Hope everything will turn out well. Those are difficult times being a parent, but it is worth it in the end. They are there to teach you something, even if it's something you wish no one teach you. The beauty is in the lesson learned. :)

I agree and I am doing my best to take lesson from it all.

Hard lessons are hard .

I'm sure this must be very frustrating and stressful for you and your wife. Hopefully they can reschedule soon as the not knowing is a terrible feeling and situation to be in. I'm glad to hear she is at least at home and not still stuck in the hospital.

The human condition is not one designed for pleasure, it is engineered for overcoming pain.

These are deep words and I can totally relate with the sentiment. I agree that we are built to battle pain not to enjoy pleasure. But then again, even pain has to take a break sometime for the human being to rest before resuming another round of battles. Can we not find beauty and pleasure in those short minutes, those few seconds?

I hope to read you complaining about steem again soon. I wish you and your family all the best and for your daughter the strength to overcome the pain and find the little pieces of pleasure that life has to offer.

I think the pleasure might only have meaning if there has been an overcoming to reach it. Our entire nervous system is set to respond to physical danger and hijacking it too often for pleasure might upset the indicators.

I'm sorry to hear about your hard times. I hope you get some answers soon. Must be frustrating not knowing what is going on and what to do to help your daughter. At least you have this blog, where you can get your thoughts out. Hope you and your family will get good news from the MRI and some results at least!

Yeah, it will get there in time, it is just one thing after another at the moment but, I am glad to see you here. :)

Well to be honest, I cannot imagine how you must be feeling right now.
On one side you have the health of your daughter and for sure the uncertainty what is going on with her. And in the other side, you are the entrepreneur trying to make a healthy income for the family! Both can't be separated from each other!
Next time I wish for a little peace, I will for sure remind me this post and the previous ones! Since reading these, I am trying to do more and more with my 2 sons. Realizing that life and a healthy family are priceless!
Hope that everything will turn out okay!
Keep the faith in the medical science and much of strength with combining the father, husband and entrepreneur role!
Cheers,
Peter

In some ways it is a, 'damned if you do, damned if you don't' situation but at least there are still options.

Parents often wish for a little peace and quiet but, do they really know what they are asking for?

That's a good sentiment.

I find myself waffling between the philosophy of Always the way and being an optimist. It's always something is my mom's characteristic saying, and she is a very negative person. I don't want to be like that, but the reality of life is that there always will be complication. I have struck those phrases from my vocabulary. I try to focus on a variation of prepare for the worst, expect the best.

I try to focus on a variation of prepare for the worst, expect the best.

This is what I attempt. Once upon a time, I was the positive one in my circles ...

I hope Steemit or your business does reward you with the kind of money to live that life where you all will be comfortable, and your daughter can always receive the best medical care in the World

Wouldn't that be grand if the monetary worries of having a sick child were at least taken care of on this planet?

Our (the World) healthcare delivery system sucks.

Good news she is home.

Worrying about the unknown is supposed to carry no value and be a waste, but of course, that's easier said than done.

Yeah, it is less worry and more preparation for several paths at this point. It is good to have her home though.