Life changes everything

Apologies for the corruption of the song title - and apologies to Les Mis!

But the last while, probably the past 6 months or so have been a time period of some realisations round here.

Life changes and moves on as kids grow, develop, need you less intensively but more in other ways and so on. Like many stages in life you have expectations of how and when those changes will occur. When they don't happen in the way you expect, to the level you expected or at all then there is a process to go through and part of that includes grieving.

It took me quite a while to realise and recognise the grieving needed after a premature birth - never mind repeated ones! And then it seemed we just kept getting hit - the expression used in the Prem Community is waiting for the other shoe to drop, sometimes you wind up being pelted!

But we have done the grieving process around the kids' various diagnoses, we recognise and know how our lives are different, forever changed, won't follow the paths we watch our friends with kids follow.

But we have also come to realise that the grieving is an ever evolving things, just as discovering new faces of the losses is ever evolving.
The kids' surgeon said recently, in trying to reassure me that he would get to the bottom of T's problems, 'Life won't always be like this for you, you know'.
It's a lovely sentiment and I took it at what he meant - this week will be the 6th time in 3 years he's had one of my kids on his operating table!

But I continued to think about it.

Now, he's right, but he's also wrong. Our current problems may not be what we will be taking forward with us in the future but, because of the nature of the kids' issues we will be taking forward different faces of related problems.

The battles we faced with W at 5 and point blank being unable to cope with me parking in a different spot at school are no longer an issue. But, since his voice has broken he's lost a lot of expression in his speaking voice - it's a stressful rah rah rah sound. I had always been thrilled we had avoided the Asperger's 'robot voice' but here it is and I have no idea how to teach expression!

I discovered the other day when I asked him about 1 detail of something that he couldn't short circuit the explanation - he had to run through the first we do..., then there's...etc. I butted in and said I just needed him to confirm the end times of the relevant swimming lessons. Total blank. Almost slack jaw territory.
He had a script in his head and couldn't short circuit it.

Just different faces from the same cause.

N's food battles rage onwards as yet unresolved and we have also come to the realisation that he is going to need an involved and aware liaison between home and school once he goes to school and particularly through secondary. Even before we pulled him out of school he was mucking round, caught half the instructions, figured out the rest on his own and finished before the others and so continued mucking around.

At home he often needs things repeated 3 times, often not because he talked over the top - which frequently happens too - but because maintaining focus for 'boring' stuff and actually knowing which are the details to catch is an issue.

He will need guidance and actual teaching how to organise himself, to make sure he knows what he needs to do for homework, which books to bring home, when things are due in. A lot of the NZ secondary education assessment is done with internal assessment so organisation and knowing how to plan are going to be crucial - and skills which will be more challenging for him to pick up.

With T his speech is struggling again, possibly due to his current health problems. Depending on what his scope shows up on Friday we may be looking down the barrel of a significant and life long health problem.

I remain extremely unconvinced by the SLT's theory that T's speech delay was due to lack of input because we were dealing with his health issues. 2 other SLTs have said there is something in his language processing at fault. So the question is where that will show up again, if it will.

Currently I'm battling just to keep his learning moving along. It's being delayed again because of lack of energy and pain at the moment and he certainly hasn't picked up all of what he lost developmentally between 2.5-4.5.

I had thought that by the time I had T at school I'd be doing a refresher to go back teaching or re-training for something else. As recently as 6 months ago I was looking at requirements to do nursing training or paramedical work.

But both P and I have come to understand that the kids are always going to need more than others. That gradual release parents do is going to have to be a lot more gradual, the work beforehand lot more intensive - and the release never as complete as other parents, particularly in W's case.

In order to get the best outcomes for the kids this does mean that they are my career path. Even if/when they are in school the home/school/medical liaison is going to be time consuming.

P has come to realise that the succession plan at work of him taking over from his parents is not going to work due to the kids demands. There are other changes afoot which significantly change our lives but will be revealed later. But it is in large part due to the children's demands and will make him more available for them and me.

I have recently had a wake up call - P came home with a nasty bug which I caught. He was sick but a course of antibiotics cleaned up the dregs for him. In my case it managed to turn to mild pnemonia which didn't respond to the first course of antibiotics (apparently resistant but wasn't actually tested) and I'm now far from well but definitely improving considerably everyday. The fact that I could be wiped out so easily by a bug that I'd have fought off fairly easily in the past is a reminder of the impacts of arthritis and the associated meds, life stress - and the horrible fact that I'm actually not in my 20s any more.

I had a GP recently say she doesn't know how I do all I do - and that she wishes she could just write me a script for a holiday.
The kids' paed said this week that she's amazed I keep up with all that I do and that the kids' demands are a full time job.
Yup, they are my job, my career path, I am a professional mother.

But both P and I have had to realise recently that this is actually it.
This is how it is, it'll change fronts but the base fires will always be there.
Some more hopes and dreams have to change, won't actually be possible.
And with those adaptions comes my own awareness that I now need to set up ways of future proofing the demands, for my own health as well as the kids' well being.
Saying you actually can't do everything is not easy. But this pneumonia has shown me I do actually need to sort something lasting and effective. But even having to think about this is another loss.

Life changes, we grow, life changes everything.