Collective noun for mass death, destruction and loss?

This post is one that has been filtering through in my mind for a while now but hopefully isn't too rambling!

People who know us know we have had an incredibly tough month this month with twin nieces being born and dying as well as an uncle dying rather more rapidly than expected. Burying 3 loved ones the week before Christmas does NOT make a good run up for the kids!

It leaves you will a lot to process too - too much emotion to do in any kind of progressive way I think, just a kind of total blanket of grief which keeps jumping out and putting it's arms around you at unexpected times. You don't really know what sparked it, or even which person you are crying for - you just are.

With the twins there is so much mixed in with the grief - they fell victim to the evils of prematurity. There but for the grace of God go we.
Our own children's lives have been at stake a number of times over the years.
We may have been on the wrong side of the stats many many times in our parenting lives but we were on the right side on the most crucial stat of all.

Watching the pain and terror of someone we care about riding the NICU roller coaster brought back strong memories. While we never rode it in such intensity, with such a drawnout life and death struggle we have ridden it unrelentingly over the years instead.

But thrown in with all of this is other grief, other loss.
W had an assessment done recently and the results came through in the middle of the maelstrom. It is very clear from this that going back to a mainstream school will never be on the cards. His need/deficit profile is such that for him to have any chance of succeeding in life that he will need very specific conditions - and thankfully we can largely supply them in the family environment.
But once places re-open next year we will have to start the process of getting him assessed by the Special Education psychs and getting paperwork in order for an enrollment in Correspondence School.

In addition to this we had another appointment with the kids' paed surgeon - largely discussing N this time but touching on T too.
The last appointment we had with the surgeon he had changed his mind on the approach to N's eating difficulties and was not going to place the promised tube.
In the interval between appointments we saw the endocrinologists at the hospital and had various tests done. Other than some bloods which were sent to another part of NZ thanks to our lab techs being on strike and the results not being back nearly a month after the blood draw - all came out fine.
We personally had written a letter to both the paed and surgeon and had W's key worker write a letter about what she has seen of N's behaviour when eating and not eating. The two combined, added to by the endocrinologist letter saying tube feeding would be a reasonable option to deal with the current situation - were enough to cause a change of plan.
N is now to have surgery on 10 Feb.

The surgeon is clearly unhappy and had clearly wanted to avoid it.
I don't like him being unhappy, I don't like essentially forcing someone into something, particularly one as drastic as this and most of all I don't like needing to do this either. If there were any other way left I'd grab it with both hands before trying this. I HATE the fact we've had to throw in the towel, lost the battle, that reflux history and feeding difficulties have triumphed.
The surgeon is of the opinion if we just wait long enough it'll all come out in the wash. We have waited and tried everything for 3 years and it has now got to the point that the behavioural, social and learning impacts and the added stress to the whole family are such that yes, waiting might get us there in the end but the cost will be too high.

I grieve this loss. As a parent, right from the very start of your child's life your role is to nurture them, help them grow and thrive. Feed them physically, emotionally and mentally. We, as a society, use food to show love, celebrate special occasions, to support one another through hard times.
When you can't feed your child it hurts - badly.
Then you start collecting titles like Failure To Thrive and the sense of failure is compounded.

People talk about artificial feeding - meaning bottles and formula. There is nothing much more artificial than connecting tubes to your child's stomach and feeding them that way.

I love and loathe T's tube in pretty much equal part. I love what it has enabled T to achieve in the nearly 2 years since he got it but I hate that he still needs it, that he needed it at all, and that it may be part of his current problems but that it's, in the surgeon's words - highly dangerous to contemplate removing it now as he's so dependent due to the other GI issues.

The idea we'll be juggling two on tubes, two lots to hook up each night, two lots of supplies to keep straight makes me feel so incredibly sad.
But I can only look forward to seeing the improvements and added learning for N that we saw with T.

And so there are many forms of grief, many ways your vision and life plans can be altered and changed, many forms of loss for your child not just having them actually die.
There are different forms of the rollercoaster and the long version is no less intense and painful than the short. The long version though does have increased chances for those fleeting moments of achievement, 'normality' and peace.
Those moments are what we have to hang on to, to give the strength, courage and perseverance to keep on, fight the next fight, jump the next hoop, make the next plan.

I would like to close this post with what I wanted to say at the twins' funeral.
I couldn't speak then, in large part because T was asleep against me at the time. It is yet another example of our life and our losses that a 5 1/2 year old didn't have the stamina that day for an hour long funeral in the middle of the afternoon (we'd delayed his tube feed due to timing and he clearly can't handle that.)

Names of course are removed.

J and M,
Over the past few weeks I've worked hard to rationalise and explain these events to my boys. But there is no way really - it's totally and completely unfair.

My mind keeps going to the concept of love being stronger than death - we all know from experience that we can continue to love those no longer with us. The grave is no impediment to that.
But if love could conquer death then we wouldn't be here today.

But the evil reach of prematurity is long and unrelenting. S and A can now be at rest.

If I could have waved a wand to stop the roller coaster and rewind time I'd have done that just as fast for you as I would for my boys.

J and M - remember that regardless of what has happened you are parents.
You may not have the day to day duties you dreamed of but you were, are and always will be parents.

J - it was a privilege to watch you grow into a mothering role in what has to be the most foreign and alien environment in the world. I was privileged to be there when you got to touch S for the first time and honoured when you invited me to touch A. The memory of how she stretched out to continue contact with my finger as I took it away will be treasured for ever.

Rest assured that none of us will forget S and A - my boys already talk of their angel cousins.

S and A - so tiny, so loved, so missed.