Wednesday, July 15, 2015

Hope as a High End Commodity



These past few months have been tough, with ups and downs, mostly downs but this is not what I want to tell you though…

There is this group of parents and relatives of children with AHDS. Of course, the first thing I did was to start asking around, trying to find out as much info as I could. Ok, there is no treatment but maybe there are still ways of improving. I cannot just give up. That is not acceptable in my book.

I was surprised by the lack of interest and ideas in our conversations and started wondering why. I mean… we are all in the same boat. We should work together and try to find solutions for our children. We should brainstorm and push decision makers and DO things.

I first got a glimpse of what’s really happening while I was talking to one of the mothers and she told me that she cannot go through everything all over again. The whole process: hope, lose hope, scrap for the tiniest bit of hope, nurture it, grow it and then lose it again and then again and again…and again.

I saw and understood her point but I couldn’t relate to it. So I gave up trying to find information from other parents and started searching on my own. From physiotherapy techniques to nutrition researches, to drug development research, to drug delivery via nanosystems, to intrathecal implantable systems, I dug through it all, I contacted people; sometimes I asked more questions than I should, sometimes I annoyed people but I kept pushing…hundreds and hundreds of hours of obsessive reading.

And this was how the process went: I would find information of value, get my hopes up, dig some more, find a flaw to the initial idea, and get my hopes even lower than before. And this carousel went on and on and on…

An example: I found a research that was describing a way to bypass the blood-brain barrier. It seems that other researchers have seen value in researching this also. It wasn’t meant for this syndrome but it doesn’t matter. There were people looking and succeeding to do this. I was ecstatic…Started jumping up and down. I made new contacts; got people together talking, maybe pushed a bit here and there, get my hopes up to the roof.

One fine day, I read another research that didn’t even have anything to do with our case. In a “by the way” kind of phrase there was an information that shattered every small piece of hope I could ever try to salvage. Thyroid hormones NEED to pass through the blood-brain barrier in order to reach the part of the brain where they are useful. Through the other ways, even if the hormones bypass the BBB they don’t have access to the part of the brain that needs the thyroid hormones.

In that moment I could literally hear my hopes shatter.
The more you hope, the harder you fall. But then again, hope is the only thing that keeps us going and when you free fall like that, scrapping for the tiniest piece of hope in order to just get you through the day becomes harder every time.
You start thinking that you cannot afford to hope for the best or even for the half best because picking up your pieces after you break takes time and energy and you have neither. You need hope but not more than a little, just enough to get you through the day.

And this is how you start sabotaging yourself and your opportunities to hope for the best again.
Rares’ blood tests came out last week. For the first time ever his indicators were within normal range. You wish you could hope for the best, if only for a short while but you don’t have the strength to pick yourself up again piece by piece…so..you don't.
Now, I’m doing more than just seeing the other mother’s point. I’m living it.

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