Smallsteps and I have had a good day so far, even though it started off with having the tube pulled out of her nose - which of course she was dreading. Yet, I also knew that this bit was the easy bit, and the same nurse from yesterday handled it so well, that Smallsteps didn't even feel it was out, until it was. And then after, we have spent the majority of the day in the city, having a nice breakfast at a café first, playing in the park and then, walking about the area talking.
For the last few days, I have been writing a bit about this, but it has been weighing on my mind for a long time, because whatever is causing the need for tests has been ongoing for awhile. My concern is two-fold, that they will find something and that they won't find something. There is obviously something going on, but it doesn't seem like it is easy to pinpoint, which means that it might be something more obscure, and obscure tends to mean worse.
It is better to know, than not know.
As uncomfortable as it can be to deal with these things, I have lived quite a lot of my own life with undiagnosed issues that had I known what they were, I could have better treated it. This doesn't always mean medical intervention either, as for some of the things, there would have been other factors, like diet or exercise changes that might have had an effect also. And now after the stroke, even with a diagnosis, there is an issue with the how to treat, because there pretty much is very little that can be done to improve the situation.
It takes away agency.
It creates a lot of ambiguity and uncertainty for the path forward and then there is a lot of trial and error and failure inherent, with very little if any progress, and often steps backward. It becomes a burden just to keep going and trying, and that is on top of all of the other burdens of daily life, like family, work and social conditions. When there is so much pressing down at the same time, it is hard to keep looking up to see if there is any light.
That sounds depressing perhaps, but at the same time, I am actually pretty proud of myself for continuing this way, even though from the outside looking in, people close to me just see me struggle. Struggle is a funny thing in this regard, because sometimes continuing to struggle is a win in and of itself, because the alternative would be not to do anything at all, to just give up.
I read a lot of stories of people who have seemingly good lives, are successful, have people who love them, giving up. So many articles I read from Australia where someone has "suddenly died" end with "helpline" numbers, even though there is no cause of death provided. I reckon a lot of people these days, especially because of the way we have engineered what is considered a "good life" through the media, feel like they are failing, because they aren't hitting those milestone marks, and they aren't as socially connected as they need to be for their own mental health.
Sometimes I wonder what I would be like if I didn't write on Hive, because even though at times it is a struggle, I believe I am better off for it. The last couple of days I have been "lazy" with the comment replies, which pains me, but I just not in the right mindset to cover them well enough. But, I am feeling better now, so in the evening, after Smallsteps has gone to bed, I will dive in and catch up, because people who take their time to comment well on my posts, deserve some of my time too.
They might be struggling also.
I hope that in time, all of these health issues Smallsteps faces will sort themselves out, but perhaps more than that, I hope she finds ways to deal with whatever she faces. I hope she will have her own personal methods, but also build a social network of people who are able to support her in what she needs, whether that be a shoulder to cry on, a hand to help her up, or the right words to inspire her to keep going, no matter how she feels in the moment.
Moments always change.
As do we all.
Taraz
[ Gen1: Hive ]
Smallsteps has the strength of both you and your wife to draw on. She is so young, and yet she has the comportment of someone much older than her tender years. To me it seems as though she will be well adjusted and will enlarge her framework of friends as she grows into young womanhood. Right now, she emulates her parents and that is where she gets her maturity from. I have long thought that you and Mrs. Taraz are great parents, even though I do not know you at all, only through this platform, but you are doing a wonderful job.
Hive is a huge benefit to you, as I see it. You are in a country where you aren't fluent in the language and coming here to vent, get things off your chest and just put your thoughts down in words helps to keep you feeling sane, so to speak. I have used it for similar purposes. Please don't feel obligated to catch up on past comments. You can't be all things to all people and most folks here know that sometimes life takes precedence. You'll be back in peak condition soon, but for now you have a little girl to worry over and dote on.
What risks do you see with this? Sometimes I feel that I grew up too fast and saw things I shouldn't have so young.
I get this, so I will "pick and choose" a little, because there are people (like yourself) who deserve more :)
I can understand your concern for sure. I think I've mentioned that my friend just went through a medical crisis. He was sick for close to nine months and visited various doctors. It wasn't until a chance occurrence that they did the right test and the found out part of what was going on. Could they have done it sooner? Would it have mattered? Would a different doctor have found it? It's hard to say, but they need remember not to dwell on all of that. I firmly believe they should have gotten a second opinion much earlier, but that doesn't change the now, and all you can really deal with is the now. I think you have a good grasp of that, so try not to let your mind wander too much.
Hopefully your friend has some hope ahead, despite the delay.
I think that one of the reasons we put off getting a second opinion, is that we are scared that it might bring worse news than the first. Often, second opinions seem to be reserved for when the news is already bad.
Yeah, that is true. There is also the thinking that doctors know more than us, so how dare we question them. He seems to be on the right track, but he still has a long road ahead of him.
I hope they find whatever the hell this is soon. Agreed, better to know than to sit wondering. And Smallsteps is so incredibly strong and resilient (especially for such a young age). I'm sure she'll blaze through whatever bs life throws at her. She has a good, solid upbringing. Stay strong (all of you) through this <3
I am just hoping that this doesn't lead to her feeling like she missed out on childhood, or that she is a victim of it in some way.
If you ask me, I think I would have found some other platform if there weren't HIVE :) Because I met HIVE while looking an alternatife platform instead Youtube, DTube ;)
Have you thought what else there is out there similar?
I came across with Minds and Sapien
Even while she’s going through a lot, she’s still smiling. That’s the attribute of a strong person
I wish her a very quick recovery
A smile in adversity is better than a frown in prosperity.
I hope you continue to have lots of strength and courage and that your little girl continues to improve. You are worthy of admiration, I imagine you as an example for others who face a situation similar to yours. Keep having faith and the courage with which you take on your problems.
I wouldn't set me as an example for much, but I tend to look after my daughter pretty well at least.
I really felt your story. Your daughter is beautiful. That which you wish for her, she will have; the love of parents their wishes and hopes is in itself is a healing and a blessing. Be calm, strong and think positive thoughts to move forward.
You are really admirable I always see that you take the time to answer all the comments there is nothing uglier than writing to someone and they do not answer you I usually read old publications and you are very consistent I like your style and way of expressing yourself nothing happens if for a few days you do not publish or do not respond to comments sometimes we are very hard on ourselves and we do not demand even if we feel bad the first thing is always health and family.
Don't do without sleep to respond to comments. Most of us who read your stuff, will understand.
Smallsteps seems to be a brave little girl. I am sure having her Dad there helped make her feel a little more brave too.
I do send my best.
Our medical technology and knowledge has advanced a lot, and continues to do so. I hope whatever smallsteps has can be easily remedied.
I agree that a lot of people are depressed and hurting too. We find ways to cope with it, and those that can't just gives up. I can't really blame those that do, since I don't know what they're going through. But the support of people around us can help lighten the load a bit.
Dear @tarazkp !
I remembered that Smallsteps have asthma.😦
I hope her health recovers quickly!🙏
I am especially worried about your health. Parents must be healthy first before their children can be healthy.
Really hope whatever condition Smallsteps is going through she will grow out of soon, or find a way to overcome without too much intervention from Doctors or drugs.
Frame of mind is something to face daily, over and above niggling doubts knowing we should do more, yet hit a brick wall not finding a way or time to climb out the hole that swallows us in when down.
I sincerely hope change happens soon, know you are both excellent parents as I have come to know from reading your posts.
Take care!
That smile is the smile of a young, brave and strong girl. Your small steps are also beautiful. I know she will overcome these obstacles because she has her loving and supportive parents by her side.