Just can't escape that treadmill...

Ah yes, it feels like a treadmill constantly running just too fast to be comfortable, that you are always just that little bit out of breath more than feels okay, and that you always feel like you just might trip suddenly and then it's all over rover.

Today was a typical example - N was a nightmare - among other things does anyone know how to get black felt tip pen out of towels and flannels? He's soaked a pen in water - 4 containers to be precise - and then got them all over the bathroom - all while actively not doing his schoolwork all morning. Trust me, this is something he's got down to a fine art - and is what will get him sent back to school one day, any old school, some days I feel like I just don't care any more, can't care any more.

He indulged in some antics today as well which literally reduced W to rocking in a corner and still had him so stressed this evening he was in tears.

So later today I drop various kids off to various destinations and take T to see the Wiggles live in concert (a children's entertainment group). I have just one kid with me, one who can sit still and behave and isn't freaked by the darkness, loud sound or proximity of lots of people - and I can pretend to be an ordinary mum doing a fun thing with her ordinary kid.
Such fun - and actually quite relaxing. He even complained of being hungry so I took him to McDonalds for some fries - and he ate the lot! So far so good - not even the eating bogeyman hanging over me!

But the treadmill starts again as soon as I get home. No more pretending normalacy, not from the second I walk in the door.


There are 2 messages on the answerphone - one from T's speech therapist setting up his next appointment, and one from W's therapist checking details about bringing in someone else who is doing work on emotion control. I check the emails and there's one from N's paed giving a list of blood tests she wants done.
Clean sweep - all three in one blow. Bang goes pretending a normal life.
Normality is a total sham, trick of lights and mirrors round here. People marvel when they are told of the kids' issues "Oh but they all look typical". That's credit to the kids' hard work - and my constant jogging on the treadmill, the one we can never seem to escape.

And then I pick up the Little Treasures Magazine (parenting mag here in NZ) and see there's an article on the stress of giving birth prematurely. It's as good as far as it goes, and goes into PTSD as well and the difference between that and PND. But then it totally blows it for me - the parents quoted have all 'recovered' and their kids are all fine. A grand old age of 3 yrs and another at 3 months.

We thought N was fine at 3 years too, W wasn't diagnosed with AS until 4. Problems with learning and higher congnative and executive function often don't show up until as late as 8.

When these problems hit, the whole seige hits again too. This is as relevant for parents of micro-prem and more severely prem babies as it is for the moderate to late prem kids. In someways it's worse for the moderate to late prem parents because we really are told to take them home and expect a normal baby - and when they aren't, and so often they aren't because of their prematurity - it is thrown back to us as our fault because they were prem or because you didn't see the warning signs and do something, or nurture them enough in the NICU - or no one listens to you when you do see the warning signs because 'nah, they are just a normal baby now.' Extremely prem parents had much bigger worries about keeping their child alive and over much more deeply engraved special needs. That extended roller coaster of the NICU sets you up for unimaginable fears and drives deeper into the PTSD grounds I'm sure.

But after having done 3 years of instantly responding to apnoea alarms and not feeding pump alarms - I'm a true pavlov dog too - at least the end of a feed doesn't trigger fear of death, that's true but the apnoeas sure do.

I also worry about what kind of a life W will lead and how truly independent it will actually be - having had to remind and re-teach him how to apply shampoo to his hair - aged nearly 12.
I don't even know if N's madcap ideas and impulse control free life will actually cut his life short - there have been a couple of close runs already in his 9 years.
I don't even know yet if T's amazing intellect will be freed enough by inteligible speech and how that's going to affect reading, writing and comprehension in the years to come. Today was a lovely example - a couple of the characters were performing in big plastic balls - he was wowed - and wanted to know if they had breathing holes in there and if there was a zip to get out. He also asked for confirmation that they were people in costumes - because dinosaurs are extinct, the octopus couldn't live outside water, and are there really dogs THAT big? But he also asked quietly in case the other kids thought they were real.

If people want to write about the stress of having a premature baby, they really need to follow it through with the on-going stresses of having a premature child. So many parents of 32 - 36 weekers in NZ will be looking at yet another article tonight and wondering why and where they have gone wrong because their child isn't 'normal' now.