So I've been ridiculously busy these past few weeks, it is almost as if everything that could go wrong has gone wrong - you name it... everything from death, to giving up work, to credit card fraud and everything inbetween. Stressed to the eyeballs doesn't cover it!
However, despite all this.. I'm always coming across the same threads, comments and rants when it comes to HI and how others think they can say whatever they like to you without taking anything into consideration. Orlaith is six and a half months old now and I'm still having to deal with annoying people and their unpleasant, irksome comments which I could totally do without! One thing I've noticed since having Orlaith, not just with myself but other parents to patients too... is the frustration with people who really have no clue, who feel they can attempt to preach to you about my child and/or hyperinsulinism. I could simply mention that I'm tired and in response I hear, "Oh welcome to parenthood!","Oh the joys of being a parent" or the most irritating of them all; the dreaded "it can't be that bad".
I find it ridiculous that someone thinks they can tell you how to look after your child anyway, completely healthy or not, but it's beyond annoying when they feel it's 100% necessary to all of a sudden become a guru in your child's condition. I stand there in shock sometimes with the utter rubbish that these morons come out with... I mean a Dr who has studied this condition for years and years - who is also the worlds best - knows a lot more than these people yet they still go on to act and talk to me like I should be taking their advice.
"My baby had that", "I have gestational diabetes, my baby must have it", "oh my brother in laws friend has the same, just take care of it at home", "it's just like diabetes", "natural sugars will sort that right out, just try a banana"... A BANANA! If only that was the answer.. I'm sure plenty of parents around the world would be rejoicing, let me tell you! Chances are they have never come across hyperinsulinism. When something as serious as brain damage or organ failure comes into the mix and as a parent I need to monitor and care for my baby 24 hours a day, 7 days a week to prevent it - don't sit there and tell me "it can't be that bad". I would praise Orlaith's dad and I, we never ever complain; we simply just get on with things and accept that it is what it is.
I don't think we should even get started on the lack of sleep. You would think this particular sort would have gotten the hint but no... once again they want to bang on about the joys of parenthood. You have no idea! Yes, EVERY parent will experience lack of sleep at some point and yes, some parents will experience this longer than others; BUT, being up all night (whilst your baby sleeps blissfully through the night, completely undisrupted) conclusively carrying out the 24 hour care required for your child's condition and only functioning on anything from 20 minutes to an hour here on there (if you're even thay lucky) is a completely different ballgame! Unless you have to administer medication, injections, feeding every 2-4 hours, regular glucose monitoring all throughout the night to a sleeping baby, don't even make a judgement. The same goes for during the day but people just talk to me like I do nothing but sit around and watch TV all day!
Others really need to think before they speak, I've seen this happen again and again with HI patients and their parents- we have every right to complain once in a while, don't tolerate someone telling you anything that you don't want to hear. At the end of the day, you are your childs parent; you are their voice as they can't speak for themselves just yet, you know best!
Anyway, I'm glad I got all of the above off my chest. Happy Wednesday everyone! X
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