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.

You know you are a Prem Parent when...

- you have your GP on speed dial on the home phone and it's one of the first in your mobile!

- you are on first name basis with the GP's receptionist.

- you know the receptionist at the hospital paed outpatients by name.

- you get recognised by hospital nurses and theatre staff.

- you get lost in a mall carpark but can navigate round a hospital like you have an inbuilt GPS.

- you have your local pharmacy number in your phone too!

- your calendar has more medical appointments than playdates.

- in discussing your child who is crying in pain and saying he can't breathe when he lies down, you comment he's clearly moving air so we don't need an ambulance for THAT!

- you know your child's own normal temperature - W runs a bit low, N runs a bit hot and T's in the middle!

- your Christmas preparations have making sure you have repeats dispensed, a final weigh in with the GP booked, and that you have about a month's worth of specialised formulas in stock because of the Christmas close down at pharmaceutical warehouses on the top of your list - oh yeah and presents had better be organised...

- when you have the re-opening date of your GP written on the calendar - and the first appt of the New Year already booked.

- when you know the coming year will simply start the medical round about all over again...

Just so tired...

Well and here we are again.
I remain convinced that if my life was written into a soap opera plot the writers would be told that it couldn't possibly be screened as it's simply too unbelievable!

My family and I must have truly annoyed some cosmic being this year - death and disaster have flooded in in the last few months.
On top of P's grandfather dying in July in a traffic crash we now have my uncle rapidly approaching death. In the same week he has been deteriorating rapidly we have had the paradoxical situation of the boys finally getting cousins - W is 12 so it's been a long time in coming!
But it's paradoxical in that the twins are very very small, very premature and even though they are now 2 days old and doing surprisingly well their survival will remain in doubt for some time to come.

I've found witnessing the dramas and emotions of a premature birth from the side lines very difficult. It's brought up a huge number of emotions for me and, knowing what I do about the path ahead for my sister in law and brother in law, and their girls, I wish with all my heart I could protect them, stop this in it's tracks, somehow shield them from all I know is heading their way.
There is so much joy in the babies' arrival, and yet so much sadness in the future and even their current circumstances. They too will be running an ultra marathon, after they step off the roller coaster of the NICU.

But whatever support I can give them, help as they learn to parent in the parallel universe of the NICU, support as the shoes drop later, encouragement to get involved with Early Intervention BEFORE they drop too far behind, friendship in the different parenting life they will be leading - anything I can offer and give in some small way makes our own path more meaningful, have slightly more point.

Just to add to the fun we have had problems with leaking pipes at home over the past month or so and today one of the mends burst! That's drama enough for any household but with T's daytime tube feeds we have to have water and so has made life more challenging on 3 separate occasions so far.

I discovered a pile of photos in my clearing up last night, some of the boys with P's grandfather, some from this time last year, T's birthday and slightly more current. I was saddened reviewing the photos of P's grandfather but shocked by the clear deterioration in T. He has become so much thinner in the face and you can see tiredness and pain in his eyes that had been such a permanent fixture until after his surgery. Typically the discovery of the photos has coincided with about 3 days of significant pain for T. He has regularly been crying inconsolably and at the slightest provocation. When I ask him what's wrong you alternately get the answer "I don't know!" or "I just hurt all over!"
To say it's heartbreaking is an understatement.

I did have a call from his surgeon today to explain some confusion over an appointment he'd said would happen before Christmas and now won't be able to happen until Feb next year. However he has discussed his case with the gastroenterologist and they have come up with a couple of drugs to try over the Christmas/New Year period. He has also said when he calls to tell me which drug we'll try he will also organise to book T in for an operation to move his feeding tube to a new site in the hopes that might relief some of the pain. This was an idea I'd floated at the last appointment and he was considering - so obviously he's decided that it makes sense.

I'm pleased he's taking action and that there are a few things we can try but my heart sinks at the prospect of more surgery for T. This will be his 4th general anaesthetic in the space of 2 years or there abouts. It will also be my 7th time to take a kid to theatre in 3 and a half years.
But it's all better than the other reality niggling away at all of us - if nothing works then no one has any answers and the probability is that T may be left unable to eat solid food without extreme pain for the rest of his life.

There is also the prospect of N finally getting some help for his eating if we succeed in our final push to persuade the surgeon back into placing a tube for him too. That will be yet another surgery - not a gleeful prospect.
We saw an endocrinologist for N yesterday - a very thorough appointment which took over an hour - and they were running 40 mins late too!
N has had some bloods and an x-ray for bone age done but no one expects any problems with those. The endocrinologist did say, in contemplating our predicament with N, that in his view placing a gastrostomy would be a 'reasonable step to take.'
He did say he would write to the surgeon with his findings and include that opinion and so hopefully that combined with a detailed but clear letter I have written and a letter from W's therapist about what she has noticed in N's behaviour when he does and doesn't eat - we may be able to persuade him back into the surgery.

But I am tired, tired of the stresses of the behaviours, the crying, watching my child in pain.

I'm tired of guiding the children through life and death situations all the while processing it myself.

I'm tired of the appointments, the record keeping, lugging the file I keep on each child to the appointments.

I'm tired of no real answers to the problems.

I'm tired of being a nurse to the kids, being a therapist to the kids, of doling out the meds, doing the cleaning, sterilizing, washing, of doing the research and careful thinking to work with the doctors and specialists.

I'm tired of worrying about the money, the added costs of formulas, specially cooked and pureed food esp for T, the supply of dvds for him to make his feeds a little more bearable.

I'm tired of the chronic, no end in sight, lack of sleep.

I'm tired of the deep, inground worry for their futures, where they are headed and what and how right the next step is medically, socially, developmentally, emotionally.

I watch other parents and while, I'm sure they worry about their kids and have concerns for them - I just wish, just for a short while I could have their lives, where their kid's biggest worry is what's in their lunchbox for lunch, if their friend will be at school today, if they've actually learnt their spelling words.
When they don't have the GP on speed dial, their calendar is full of play dates not hospital appointments and the supermarket shop doesn't include a trip to the chemist next door to get the month's worth of formula, high cal feeds and gauze.
I'm sure juggling a normal household isn't a walk in the park, and I'm sure if I got to do that then I'd very rapidly complain about the small details too - but from the outside, looking in, it just looks so much simpler.

"I have a hard life don't I Mummy?"

And how do you respond to that?

Try to be positive and bracing - "No of course not dear, you're just fine." Blow nearly 5 1/2 years of painful experiences and struggles into insignificance?

Say "Yes, actually sweetheart, your life does suck." Risk the poor mes and developing a chip against the world and life in general?

When it comes from your 5 yr old who is currently hooked up to a feeding pump, complaining he hurts and is fresh from a surgical appointment where it is acknowledged something significant is wrong but no one can really figure it out, and where when he tells the surgeon that he wants to be a surgeon too when he grows up he's told that he'd make an extra good one with all he's been through in his life so far, WHAT DO YOU SAY?

I've always kept going thinking that at least the kids haven't needed surgery - um blown that one out of the water with 6 trips to theatre in 3 years
and that at least they don't have anything that's going to kill them - undernutrition and reflux had a damn good crack at it on T when he was 3 months old.

And now we're facing another impossible situation, two really.
There seem to be no answers for T's gloopies - mild inflammation, some eosinophils but not enough really to dx EE. Omeprazole doesn't help, cisapride didn't when we tried it earlier in this saga. Motility seems fine, peristaltic motion is fine.
We could tighten the nissen but there's no sign at all of it being too loose, he still can't vomit and surgeon doesn't want to anyway as it'd most likely make things worse.

The suspicion is that all his growth post op means that the button is tethering his stomach to one spot, the nissen is tethering it to another and so when it fills it can't move properly and that's causing the pain.

The answer to that - remove the button. But he's eating virtually nothing, we're struggling to maintain his weight as it is, he won't drink his formula and so is tube dependant right now. As the surgeon says that option's highly dangerous.
And it might not be the answer any way.

And so we're back at the point of having our backs against a wall. There's nowhere to go but something has to change.
I have a child who regularly cries in pain, wants to eat and just can't. When he does eat he winds up in so much pain that he won't eat much for a few days.
He spends at least an hour a day attached to a feeding pump and I'm spending at least that much time washing, cleaning and sterilizing feeding equipment.

And so we see a paed gastroenterologist on 3 Dec. She may or may not have any answers. Even if she does the surgeon has said they sometimes come out with way off beam ideas and if that's the case then he won't follow them - eg tighten the nissen.

I suggested that if the button is pinning his tummy in the wrong place can we reposition the button? So if the gastro can't come up with any useful insights then that's the next attempt. It may or may not work but it's a half way step between pulling it entirely and doing nothing - neither of which are really options.
But as the surgeon said we don't want to do anything which could make things worse.
God forbid that happen - it's already close to nightmare territory.

The other possibility is to treat him as though he does have EE and see if that helps. That'll be interesting since all his skin pricks (20 different items) all came out negative. To successfully treat EE you have to eliminate whatever he's allergic too. He's already dairy, soy, apple and strawberry free. We have no idea what could be further allergies. You also treat it with steroids - but you can't maintain any improvements or get significant improvements unless you eliminate the allergens.

And so we're back with our backs to the wall, a kid who is struggling along, clearly not right but with no answers.
And I have a kid who regularly complains of pain - "just ordinary sore Mummy, not really sore this time" or lies on the floor saying "I just can't handle this pain any more" and weeping his little heart out.

Yes T, I think you do have a hard life. It could be worse but it's still been a lot to manage and a lot more than most kids of 5 years old.

You do have to measure how long the journey is, to recognise all you have overcome to this point, to honour the experiences. That is what gives you the strength to go on - the propulsion to believe that it will come right, we just have to keep on plodding onwards. But there's no harm too in acknowledging it's hard either.
Some days it's bloody hard.


---------------------

And what's more fun than having your back against the wall with one kid?
Being in that position with two kids of course!

We're playing the same familiar, frustrating game with N that we did with T.
After having a game plan and both the surgeon and the paed saying yes, they were prepared to put a tube into N as something has to change - the surgeon says he doesn't want to and the paed doesn't want to either.

Can I tear my hair out NOW???

Anyone here think WE want to either?
Either of the docs got any magic wands to wave?
Anyone actually, seriously think that it's okay for a nearly 10 year old to be on a liquid diet only?
I love the surgeon's view that once N hits his teens he'll magically start to eat. I love the theory but I don't believe it for one second.

And so we are waiting to see a paed endocrinologist for N (a new speciality for us - yes there are a few we haven't delved into over 12 1/2 years!). That will apparently be before Christmas and we'll hear from the hospital in due course.
The surgeon doesn't even want to do any investigations until N's seen the endo.

He doesn't think that a tube will be the silver bullet we want it to be.
We've tried time - what else is there? Something has to change.

But in the meantime - I can do the limbo, the medical limbo that is - that's one dance I'm very skilled at by now.

Euphemistically parenting

There are many euphemisms you hear about parenting - parenting's not for the faint-hearted, not for wusses, not for sissies.
People talk about being in for the long haul, some parents say all knowingly "It's not a sprint, it's a marathon, you have to pace yourself".
Once you enter the NICU everyone will tell you it's a roller coaster ride.
People, myself included, talk about being back on the medical merry go round.

So if we're going to run with the imagery - I think that if 'ordinary' parenting (I know there's no such thing!) is a marathon then what I'm doing with my boys has to be an ultra marathon.

Ultra marathons are a longer distance and have different activities within them, not just running. They are designed to stretch you to your limits and be grueling. Of course like any of those things you train for them and there are parts you find easy or even enjoyable, the bits you are best at.

The easier, more relaxed down hill slope was nicely epitomised for me this week when I had T at the GP for his fortnightly weigh in. He was having a great day, charming, clever, slightly cheeky, joking around with the GP but impressing at the same time. He choked on some water and the doctor's comment was "Oh that went down the wrong way didn't it!" T's response "Yes, it went down into my lungs instead of my oesophagus into my tummy. But it's okay now because I've coughed it back up so it can go down the right tube now." A moment later he was discussing the odds of various cars getting out of the 'traffic jam' he'd carefully created in a path across the room with the doctor.

Yes, we were still in the grueling ultra marathon - he was being weighed because of all his issues at the moment and had managed to lose 250g in two weeks despite the late nights, the day feeds, the tasty tit bits for him to eat, the carefully concocted purees. But he was in a great mood and buzzing round doing what kids should be doing.

Another gentle slope came the next day at the hairdresser where he was picking out the letters of his name from the lettering on the window and actually writing them on a bit of paper for them. I didn't know he knew so many letters as his learning has been very slow due to the health problems this year, but there he was identifying and writing letters and even unphased when some of the letters in his name weren't on the wall, he just added them in with a little help.

But then we hit another uphill battle, a steep incline, an event which shows perhaps you hadn't done all the training you should have.

T has croup - we're in the middle of summer here so a little unexpected but not impossible.
It hit hard and fast.
He was indrawing badly with every breath the first night, he was whitey/blue/grey around the nose and mouth and very scared.
And so I was thrown back into the 'hospital or not' mode - I checked his lips, fingertips - all still pink so oxygen levels weren't too bad, his resp rate was 19 - 22 breaths a min once I'd managed to calm him down so not in too much distress.
As P's away I decided to watch and monitor instead of taking all 3 kids to the ED in the night!
And so I was up until 2am, counting resp rate, checking colour, listening to the croupy stridor in and out on every breath and checking how many auxilary muscles he was using to breathe.

I took him to the GP the next day, yes second time in one week and yes, the same person who had joked around with him 2 days earlier. And we walked out with a kid on steroids. Last night wasn't as bad as the first night but I was still up until 1am with him working hard to breathe, reassuring and monitoring him.
Today he's still huffing and puffing, this afternoon I wonder if he's taken a turn for the worse - retching after his feed, dribbling rather than swallowing and sleeping only on my lap propped right up.

And so the ultra marathon continues.

On Tuesday we see the surgeon for T and N and we need to give him a bit of a hurry up on sorting things for N. His eating is virtually non-existent again and he even got to the point recently of retching, headaches and feeling terrible due to lack of eating. We will also get T's biopsy results. If they show nothing then no one knows what's causing the 'gloopies' or how to fix them.
If they do show EE then we have to start treating it - and more importantly figuring out what's triggering it, esp since all his skin prick tests came out negative!

Life with my kids is definitely an ultra marathon - and sometimes I get the stitch and wish it could all slow down or stop. But it's those gentle inclines, those days like T had before he got sick, which help to carry you on through the long hard hauls.

It's life Jim, but not as you know it...or want it to be...

First off I'd like to say I've noticed that there are a small handful of followers here and I know I get a certain number of people reading from around the place.
It's nice to know that I'm not just blogging out into the ether and lovely to get comments from people too if what I've said strikes a chord, makes them think or whatever.

So thanks people for letting me know I'm not totally alone out here :-)

And so that said I have no idea how to sum up this one.
All the euphemisms of it being an ultra marathon, a roller coaster ride, waiting for the other shoe to drop and anything else you can think of don't quite sum it up.
It's been a veritable hail storm of shoes lately and I think I have the stitch in my running of this ultra marathon.

When I get news of varying descriptions I usually sit and process for a bit, maybe do a whole lot of reading, maybe throw a mental tantrum, rant and rave it's just not fair, kick a few walls in my head - and then you just have to get on with it.
That usually, for me, means more reading, thinking through the issues or new concern and how to manage it in the context of our day to day lives - and then picking up and doing it.

It's the only way when the kids are depending on you.

But you do need the headspace to do it in - and sometimes the shoes are falling so fast you get dizzy and just don't have time to process.

And so it has been this week.

T went and had his scope and biopsy last week and the very quick chat I had with the surgeon said that the oesophagus looked okay. So no scarring, no surgical problem - great news.
So then what's the problem??? The possibility of EE (eosinophilic oesophagitis) I thought had vanished too as there are usually tell tale signs in the oesophagus to be seen on the scope.
So - as per my protocol I start to do more in depth reading and discover that in 9 - 32% of kids with EE they don't have changes visible on endoscope.
So it's still a possibility - a rare presentation of a rare condition, um, yeah, that'd be us. Having talked to the dietitian this week as well she said that at the early stages of the disease there often aren't changes anyway - and if T has it that's where he'd be.
So we wait for the biopsy results which will tell us definitely yes or no.

On the basis of the endoscope being fine and knowing there isn't any scarring or narrowing and so the impaction risk is really really low we decided to give in to T's wishes and try him back on normal food.

That would be an epic fail to put it nicely!

We started on Monday with just some bread which he loves and hasn't had for about 2 months - this whole saga's been going on for nearly 6 months now. That resulted in hiccups and an attack of the 'gloopies' like we hadn't heard in ages.
But he was happy enough and so we gave him some bread the next morning.
That morning we had an appointment with the surgeon for N (that joy will be discussed in a later post!) and T was still cheerful although saying he was a little sore.
He happily declared to the surgeon that bread didn't hurt and the surgeon commented that T had more colour in his cheeks than he'd seen in some time. Certainly T's energy levels improved dramatically once we gave him something more solid than rice bubbles!

But it all turned to custard later on that day with loud, audible gloopies, frantically busy one moment and lying on the floor crying and resting the next and complaining of increasing pain. But the time P came home T was doing his last round of frantic activity running round and round the coffee table, laughing like crazy trying to catch one of his brothers. And then he absolutely hit the wall - screaming crying hysterically, totally inconsolable. He was complaining of a lot of pain in his tummy and chest too. In the end we put him to bed with no dinner eaten and his night feed on and loaded with a dose of pain killers. He needed another one around midnight that night too as the pain woke him.

I guess, at least he showed us that it wasn't all in our minds.

But P was taken by surprise at the mercurial changes in T's mood. I've got used to these sudden collapses over all this time as I have to deal with it most often but it had been a while since P'd experienced one first hand.
And so we emailed the dietitian that evening - only to get a call to come in for an urgent appointment the next morning.

End result is that he's now on 3 tube feeds during the day as well as his overnight ones. This way he won't be on the pump all night and we can keep his energy levels up during the day. BUT...and there's always a catch...he can't sustain much of a flow ate so even though we're starting on 100mls a time it's still taking a good 3/4 of an hour to get it down. So that seriously limits us in doing anything outside the house at the moment.

We're on day two of this new regime and in fact he has increasing pain levels, eating way less orally and actually quite miserable.

So my biggest fear - that with day tube feeds we can kiss goodbye to the oral eating skills we have worked so hard on and fought for - look like I was right. We'll see, it is only day two and he does have to learn to adapt.
But it's so depressing to be at this point after all we've been through to get him to eat.
He wants to eat, he cries to eat, but then he cries in pain as well.

His self report of pain hasn't matched with what I can see and suspect are the real pain levels and so I've just introduced a faces chart for him to indicate how sore he may or may not be. Interestingly he says he's only a little bit sore and then points to the 3rd or 4th face out of 5. I have double checked with him to be sure he understands the scale - it's a proper paed scale they use in hospitals etc that I've printed from the net and designed for kids slightly younger and older than him.
I've also been looking at pain rating scales that medical people use for assessing pain in kids who can't tell you how much pain they are in and my reading of those would rate his behaviours at about the same pain level as the face he is indicating rather than his verbal self report.
But so sad for him that he's experiencing pain like this.

The whole situation makes me feel heartsick. The child's journey has been so difficult and so full of painful experiences. I can only hope we find the light at the end of this particular tunnel for him soon.
Even if the final diagnosis is EE, at least we have an answer and can relieve the pain for him.

It's all such a long journey, one that I'm tired of, we make progress and then have it all snatched away.

I should be grateful for the tube - the tube I fought so long and hard to get for him. But I'm not, maybe I'm greedy but I want a kid who can eat as he wants, who doesn't live with pain, who doesn't wake at night, tell you he's in pain but "I can ignore it Mummy".
Why Thomas? Why us? Why can't things just go right for once for us and him??

But for now I have a little boy, sitting by my feet, groaning and who needs cuddles and care.

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.