I have been the unwilling recipient of many a thoughtless, stupid or plain mean comment over the years with the kids.
They range from the idiot who told me I was lucky to have a baby in the NICU as at least I had built in baby sitting - when all I was desperate for was to take my baby home and not walk out of that building once more without him;
The woman on the bus who asked what I'd done wrong to make my baby so small (referring to a still not due yet W) - I told her I washed him and he shrank!
The wonderful person who told me "You do the crime you do the time" when I yawned and said I was tired from 2am feeds - T was 10 months old and we were setting alarms to feed him as per paed instructions.
The person who tells me how much their kid eats in a single sitting and how much they weigh now and then asks, knowing our battles with all the kids, says they bet their kid is bigger than mine and what does x weigh now?
The 'helpful' person on the street who tells me I can't really be a mother of my baby as I clearly have no breast milk for him;
The person who tells me it's lucky my child has developmental delays because they can stay a baby for that much longer. The other variant is being lucky they are tiny because they stay a baby for longer - not so much fun when you are putting your 6 month old into newborn clothes and you are sooooo sick of stretch'n'grows!
The health-fixated passerby doing their bit for child obesity and tells me I shouldn't be giving my child a lollipop or a small packet of chippies.
This one happened on 3 separate occasions all to T - the lollipop was after a major blood draw and was an incredibly well earnt reward, the chippies on one occasion was the first solid food he'd eaten in 24 hours and was tentatively eating his second chip and on hearing the 'health announcement' handed me the packet back and refused to eat anything more - I nearly cried.
The third was one afternoon when he'd actually asked for them! It was only about 7 months after his surgery and I happily bought them. I gave her an eyeful of tube and said we were happy he could eat anything.
The woman in the supermarket who took T to task for fiddling 'down there', declaring none of her children or grandkids would have dared to - it wasn't long after his long tube had been removed and switched for his button recently and he was in the habit of holding it and protecting himself from it pulling. If only I'd thought to explain, show her his scar riddled tummy and button.
The innumerable people who have seen fit to pass loudly audible judgement on the temperament and manners of my child and/or my parenting skills as I have a child in full autistic meltdown, running through the supermarket yelling about anything and everything which comes into his head and will not stop for anything or any other child behaviour which doesn't fit the socially accepted 'norm'.
The people who can't understand that a child is going to be extremely distressed when their feeds have been juggled to fit in with an event, everything is running late, they are almost overhungry now - and then we discover there's nothing allergen-free/suitable to eat.
The people who ask and seem oh-so-surprised when you explain that no, W hasn't 'outgrown' his Asperger's or N his ADHD. In fact so many kids don't 'out-grow' their prematurity too - a premature baby grows into a premature child in so many cases.
the people who declare "children didn't behave like that in our day" - no, they didn't. They were in institutions or dead.
And that brings me beautifully to today's excellent example of a DHAC who simply has to prove it in the most obnoxious way possible - the person who stops you as your tube-fed child, still attached to a pump, runs off after his brothers and says that kids like that ought to be in hospital and it would have been kinder just to let him die.
I'm sure many of my readers have plenty of these comments of their own they've collected over the years and have suffered the same pain. Do feel free to add them on the comments section! :-)
But why do the comments hurt? Quite apart from the obvious with the latest one - how can you suggest my beautiful, life-filled child would be better dead? Why do they hurt?
In part I think it's because they are simply destined to hurt with their thoughtlessness.
Part is because you see what you don't have any more or never had to start with.
Part is sheer and utter jealousy on our parts - wouldn't it be wonderful to live life not knowing about all of these issues?
Without the worry, concern, fear?
Wouldn't it be lovely to walk down the street and see a kid eating a packet of chippies and think about something other than how many calories, nutrients and any possible spin-offs like drinking extra formula there might be in it?
To watch a child run, climb and jump off something and not know and think about what a complex series of motor skills that requires - all at the same time scanning for hazards for your child's inevitable fall because they haven't mastered the motor skills their peers have but they want to do it anyway.
This is one of those many Face Book statuses which do the rounds but is very very appropriate here -
For all the parents who had to wait longer to hear a first word,
Who spent more time in doctors offices with their child than on playdates,
Who endure countless bad days and the stares from other people,
For the parents whose child's first friend was their therapist,
For all the parents who face special needs every day.
We salute you.
But more than that I salute the children themselves - those who have never known any other life,
Those who battle on to do as their peers do even though they are a million miles behind them,
Those struggle with ordinary every day skills such as eating - or breathing!
Those who keep smiling through it all - and keep making it worth it for us to go out there every day and fight for them.
They are the true heroes.
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