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.
Our on-going saga with life with 3 prematurely born boys. The fun doesn't end at the NICU door, even for 'late' preemies.
Tuesday, November 16, 2010
Friday, November 12, 2010
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.
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.
Friday, October 22, 2010
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.
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.
Sunday, October 10, 2010
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.
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.
Monday, September 27, 2010
Parenting - art or science, practice or theory??
I've had an interesting weekend.
A number of things have coincided and lead to this post.
I have a FaceBook friend with views and outlooks very different to my own. I often don't agree with the outlooks she has but do try to find the time to read her links and ponder on the other perspective. Our parenting experiences are very different and I think that's largely part of the difference. But no one knows what they'd do if their lives were different - until they are.
I also have a sister and sister-in-law pregnant for the first time and had an interesting discussion with my sister-in-law on the weekend about some of her plans for when her babies are born (she's expecting twins).
There was also an interesting article I read recently about the competitive nature of parenting.
I think that, because the boys are older, some of my thoughts and approaches to do with newborns are perhaps a little more jaundiced, battle weary, and covered by the haze of time and fatigue! But I also like to think that they have also been forced into practicality by experience.
But as I say I try to ponder the other views when I can - perhaps in the dreaded jargon of my teacher training - being a reflective parent.
There is a lot said about theories, ideals, shoulds and should nots - a lot of which are rooted in philosophy, medical science, society, comparing and judging or not judging other parents for their choices. And then there's a lot said about the reaction to those differences, people's sensitivity to criticism or judgement - perceived or real.
How many of us plan to be a certain type of parent? When that test comes out positive how many of us reach for the guide books and decide this is the kind of parent I'm going to be, this is how my children are going to be, sleep, feed, play?
I know, in my case I didn't think so much about a theory of parenting as daydream about what my child might grow up to be, what they might look like. Later the practicalities of getting things ready became higher up the list.
I did make plans on the use of dummies, cloth or disposable nappies, did have brief conversations with P about where the baby would sleep but at least some of those plans were made on past history - this is what we expected and so why vary it.
What happens to those plans when life has other plans? Is parenting an art or a science? Does it follow a theory or is it a more fluid practice? How do you cope if your plans are thrown out the window by actual situation and how do you then re-model yourself as a parent with your current situation.
I do wonder whether some of the increasing incidence of Postnatal Depression can be due to this tendency to plan, to think out an approach to parenting before you even have the baby, to have an underpinning philosophy that you will not vary because to do so in any way will betray your carefully researched principles.
Just in the way mothers who have a hard and fast birth plan which they are adamant they will not be deviating from and then all hell breaks loose, you wind up with the complete opposite and then the mother is devastated, feels cheated and betrayed - possibly by the doctors, by the baby even but largely by their own body, that they "couldn't even do this right", those who have a hard and fast theory of how they are going to parent have come up with this minus the most important factor - the other partner in the relationship - the child.
There are so many contentious issues in parenting and even those who are not parents will hold a view and opinion - from the way you give birth, to how you feed, sleep, nappy a baby, respond to their needs.
When these things are discussed it can become very heated and result in people being very upset.
There is definitely the competitive edge to some of these theories of parenting - who does the most with their kids, who holds them the most, is most responsive (always a matter that is only in the eye of the beholder in every case other than the obviously abusive), whose kids are the most advanced and is this because they were nurtured in a particular way, feed in a particular way, slept in a particular way - obviously if my kids are bigger, brighter, stronger, faster then I'm the better parent. That's the competitive approach.
But there is a core, underpinning factor when it comes to discussions of parenting techniques and really WHY people get so heated. People say if you are secure in your choices, your approaches then why get upset? If you are then you can't be secure.
But the thing is - parenting, I think for any parent but particularly for mothers and possibly even more so for stay-at-home mothers - is an intrinsic part of who we are and what we do.
Just as it's a known phenomenon that men, suddenly made redundant have a lot of difficulties because their sense of self, self-worth and where they sit in the world is associated with their occupation and being good at it; so it is with parenting - we pour so much of ourselves into it, it is who we are, what we do and why we do it. We talk about Our Kids, they are our future and of course we love them madly and deeply. How can we not have ourselves fully invested in them? If we don't then does that make us a bad parent?
And in return your child is fully invested in you - to the world you may be one little person but to one little person you are the world!
And so how can parenting discussions not affect you? It's nothing to do with your security in your choices but everything to do with the natural search to be the best parent you can become. It's why I try to read, think, widen my point of view beyond my specific parenting technique, see what perhaps I can tweak, change, adapt, learn from others. But when these things are presented as absolutes, if you don't then you aren't doing the best for your child, you could harm your child if you don't do as I do etc. then that self image, self worth - and the defense mechanism to say of course you are a good parent so I'd better not listen to this - kicks in.
These issues can be as varied as honouring the child's need to cry because they are feeling violated because you are changing their nappy, how you deal with a tantrum or how you feed your infant. I can raise my eyebrows and think to myself 'Nice theory, love to see how long that lasts in practice' when someone tells me of asking their infant's permission to change their nappy and waiting until they get a sense of it being okay with them. When it comes to being told that formula is poison and that you are harming, damaging and poisoning your child by feeding them that, that you can't bond properly if you don't breastfeed or hold your baby as soon as they were born etc then I get upset.
I am upset not because I am insecure in my choices, but because these are more extreme views, views which not not even attempt to consider the vast range of parenting experiences and which, because they do not acknowledge other's realities, devalue others just because they are not the same.
Formula is not poison. You can bond just as well with your infant over a bottle as a breast. And all is not lost if you cannot do skin to skin or even touch your newborn.
For myself I see my parenting as a fluid thing, an art and a practice.
I would not presume to say I've got this parenting thing taped now after 12 years.
I know that every day can throw me another curve ball, another new experience.
I know that every day is the first time I have had to parent a 12 yr and however many days old child.
I was taught the lesson that each child and their needs and their needed parenting is very different very clearly when I had N. Yes, I was more confident in handling a newborn, yes I knew more basics - but N taught me that he was not W and when responded to the same way this wouldn't necessarily fill his needs.
The philosophy of how much you intervene in children's games and fights has been adapted from what I thought and read - my boys, due to their needs need much more hands on intervention to prevent injuries.
The cry-it-out or not situation has been shaped by needs at the time and the state of the child at the time.
Some approaches or 'rules' for lack of a better word that I have developed have been adapted and melded by my parenting experiences. No I never wanted or planned to cause my children pain but we all wind up holding them down against their will for some things at some stage. Through our experiences I've adapted from the help hold them down for immunisations to a point where now - if they can't bring in extra staff such as for a blood test then I'll help but when a procedure or test is going to be upsetting for the child or painful then I'm not getting involved and will only be present for the child's reassurance - Mummy is there for comfort, although in some circumstances the child may feel that bringing them to that point is betrayal enough. If that's the case then I didn't do a good enough job explaining WHY they need to go through this.
I never planned to homeschool but that's where we're at due to circumstances with the children. I also planned to be thinking about a future career, re-training or doing a refresher course and going back to work part time by this point. But we have come to the dawning realisation that our particular children are always going to have higher needs - our current crises may not be what we take forward into the future but there will always be other needs rising up and needing higher levels of parental involvement than other children. I could be kicking against this reality, frustrated with the hand we've been dealt, the fact that we will probably always be struggling, that I may well never have a formalised career or recognised job.
But that doesn't help the kids - my job is raising our children to the best they can be and if our reality needs more than others then so be it.
My parenting, my plans, my approaches are fluid and adaptable. They have to be to adapt to my particular version of reality.
Hard and fast plans usually lead to pain, upset and disappointment. Don't plan it if you can't handle the possibility of it all changing on you.
But also constantly recognise that my reality, my parenting and each individual child of mine is different to the parallel universe of your reality, your parenting and your children.
Different is not bad, it's not failing the child or hurting them and we all need to remember that growing this child to an adult ready to step up and take their place in society is a central, core, emotive and heart strings kind of thing.
You have to invest yourself - and so naturally conflicting viewpoints are going to cut as well. It's not a matter of insecurity, having made true choices and so not feeling guilt or whatever, those are 'excuses' offered by those who struggle to see a reality beyond their own for whatever reason, but that a good parent is one who is one who looks, thinks, ponders options and as a result wonders is what I am doing the best I can and takes things to heart.
A number of things have coincided and lead to this post.
I have a FaceBook friend with views and outlooks very different to my own. I often don't agree with the outlooks she has but do try to find the time to read her links and ponder on the other perspective. Our parenting experiences are very different and I think that's largely part of the difference. But no one knows what they'd do if their lives were different - until they are.
I also have a sister and sister-in-law pregnant for the first time and had an interesting discussion with my sister-in-law on the weekend about some of her plans for when her babies are born (she's expecting twins).
There was also an interesting article I read recently about the competitive nature of parenting.
I think that, because the boys are older, some of my thoughts and approaches to do with newborns are perhaps a little more jaundiced, battle weary, and covered by the haze of time and fatigue! But I also like to think that they have also been forced into practicality by experience.
But as I say I try to ponder the other views when I can - perhaps in the dreaded jargon of my teacher training - being a reflective parent.
There is a lot said about theories, ideals, shoulds and should nots - a lot of which are rooted in philosophy, medical science, society, comparing and judging or not judging other parents for their choices. And then there's a lot said about the reaction to those differences, people's sensitivity to criticism or judgement - perceived or real.
How many of us plan to be a certain type of parent? When that test comes out positive how many of us reach for the guide books and decide this is the kind of parent I'm going to be, this is how my children are going to be, sleep, feed, play?
I know, in my case I didn't think so much about a theory of parenting as daydream about what my child might grow up to be, what they might look like. Later the practicalities of getting things ready became higher up the list.
I did make plans on the use of dummies, cloth or disposable nappies, did have brief conversations with P about where the baby would sleep but at least some of those plans were made on past history - this is what we expected and so why vary it.
What happens to those plans when life has other plans? Is parenting an art or a science? Does it follow a theory or is it a more fluid practice? How do you cope if your plans are thrown out the window by actual situation and how do you then re-model yourself as a parent with your current situation.
I do wonder whether some of the increasing incidence of Postnatal Depression can be due to this tendency to plan, to think out an approach to parenting before you even have the baby, to have an underpinning philosophy that you will not vary because to do so in any way will betray your carefully researched principles.
Just in the way mothers who have a hard and fast birth plan which they are adamant they will not be deviating from and then all hell breaks loose, you wind up with the complete opposite and then the mother is devastated, feels cheated and betrayed - possibly by the doctors, by the baby even but largely by their own body, that they "couldn't even do this right", those who have a hard and fast theory of how they are going to parent have come up with this minus the most important factor - the other partner in the relationship - the child.
There are so many contentious issues in parenting and even those who are not parents will hold a view and opinion - from the way you give birth, to how you feed, sleep, nappy a baby, respond to their needs.
When these things are discussed it can become very heated and result in people being very upset.
There is definitely the competitive edge to some of these theories of parenting - who does the most with their kids, who holds them the most, is most responsive (always a matter that is only in the eye of the beholder in every case other than the obviously abusive), whose kids are the most advanced and is this because they were nurtured in a particular way, feed in a particular way, slept in a particular way - obviously if my kids are bigger, brighter, stronger, faster then I'm the better parent. That's the competitive approach.
But there is a core, underpinning factor when it comes to discussions of parenting techniques and really WHY people get so heated. People say if you are secure in your choices, your approaches then why get upset? If you are then you can't be secure.
But the thing is - parenting, I think for any parent but particularly for mothers and possibly even more so for stay-at-home mothers - is an intrinsic part of who we are and what we do.
Just as it's a known phenomenon that men, suddenly made redundant have a lot of difficulties because their sense of self, self-worth and where they sit in the world is associated with their occupation and being good at it; so it is with parenting - we pour so much of ourselves into it, it is who we are, what we do and why we do it. We talk about Our Kids, they are our future and of course we love them madly and deeply. How can we not have ourselves fully invested in them? If we don't then does that make us a bad parent?
And in return your child is fully invested in you - to the world you may be one little person but to one little person you are the world!
And so how can parenting discussions not affect you? It's nothing to do with your security in your choices but everything to do with the natural search to be the best parent you can become. It's why I try to read, think, widen my point of view beyond my specific parenting technique, see what perhaps I can tweak, change, adapt, learn from others. But when these things are presented as absolutes, if you don't then you aren't doing the best for your child, you could harm your child if you don't do as I do etc. then that self image, self worth - and the defense mechanism to say of course you are a good parent so I'd better not listen to this - kicks in.
These issues can be as varied as honouring the child's need to cry because they are feeling violated because you are changing their nappy, how you deal with a tantrum or how you feed your infant. I can raise my eyebrows and think to myself 'Nice theory, love to see how long that lasts in practice' when someone tells me of asking their infant's permission to change their nappy and waiting until they get a sense of it being okay with them. When it comes to being told that formula is poison and that you are harming, damaging and poisoning your child by feeding them that, that you can't bond properly if you don't breastfeed or hold your baby as soon as they were born etc then I get upset.
I am upset not because I am insecure in my choices, but because these are more extreme views, views which not not even attempt to consider the vast range of parenting experiences and which, because they do not acknowledge other's realities, devalue others just because they are not the same.
Formula is not poison. You can bond just as well with your infant over a bottle as a breast. And all is not lost if you cannot do skin to skin or even touch your newborn.
For myself I see my parenting as a fluid thing, an art and a practice.
I would not presume to say I've got this parenting thing taped now after 12 years.
I know that every day can throw me another curve ball, another new experience.
I know that every day is the first time I have had to parent a 12 yr and however many days old child.
I was taught the lesson that each child and their needs and their needed parenting is very different very clearly when I had N. Yes, I was more confident in handling a newborn, yes I knew more basics - but N taught me that he was not W and when responded to the same way this wouldn't necessarily fill his needs.
The philosophy of how much you intervene in children's games and fights has been adapted from what I thought and read - my boys, due to their needs need much more hands on intervention to prevent injuries.
The cry-it-out or not situation has been shaped by needs at the time and the state of the child at the time.
Some approaches or 'rules' for lack of a better word that I have developed have been adapted and melded by my parenting experiences. No I never wanted or planned to cause my children pain but we all wind up holding them down against their will for some things at some stage. Through our experiences I've adapted from the help hold them down for immunisations to a point where now - if they can't bring in extra staff such as for a blood test then I'll help but when a procedure or test is going to be upsetting for the child or painful then I'm not getting involved and will only be present for the child's reassurance - Mummy is there for comfort, although in some circumstances the child may feel that bringing them to that point is betrayal enough. If that's the case then I didn't do a good enough job explaining WHY they need to go through this.
I never planned to homeschool but that's where we're at due to circumstances with the children. I also planned to be thinking about a future career, re-training or doing a refresher course and going back to work part time by this point. But we have come to the dawning realisation that our particular children are always going to have higher needs - our current crises may not be what we take forward into the future but there will always be other needs rising up and needing higher levels of parental involvement than other children. I could be kicking against this reality, frustrated with the hand we've been dealt, the fact that we will probably always be struggling, that I may well never have a formalised career or recognised job.
But that doesn't help the kids - my job is raising our children to the best they can be and if our reality needs more than others then so be it.
My parenting, my plans, my approaches are fluid and adaptable. They have to be to adapt to my particular version of reality.
Hard and fast plans usually lead to pain, upset and disappointment. Don't plan it if you can't handle the possibility of it all changing on you.
But also constantly recognise that my reality, my parenting and each individual child of mine is different to the parallel universe of your reality, your parenting and your children.
Different is not bad, it's not failing the child or hurting them and we all need to remember that growing this child to an adult ready to step up and take their place in society is a central, core, emotive and heart strings kind of thing.
You have to invest yourself - and so naturally conflicting viewpoints are going to cut as well. It's not a matter of insecurity, having made true choices and so not feeling guilt or whatever, those are 'excuses' offered by those who struggle to see a reality beyond their own for whatever reason, but that a good parent is one who is one who looks, thinks, ponders options and as a result wonders is what I am doing the best I can and takes things to heart.
Monday, September 6, 2010
Round and Round the Mulberry Bush...
I may have posted under this heading before - I can't remember.
My version of groundhog day consists of waiting for doctors, seeing doctors, going to chemists, organising follow up appointments - oh and the odd bit of research in between!
And so to T news - we saw the surgeon today and he is happy that the wrap is in place, that there is no gross reflux, that the wrap is relaxing to let food through, the stomach has good capacity and that there are no obvious obstructions in the oesophagus.
He has said there is nothing surgical he can offer - if he went in there he wouldn't know what to operate ON!
However - we're all agreed that something is not right. And so T is now on the list for a scope and biopsy. While nothing showed up on the barium as needing dilation he said he may well put a dilator down anyway on the off chance while he's in there.
We are stuck in the public system and all the waiting that entails because, just as the hospital has the only paed radiologist south of Taupo, so the hospital has the only paed pathologist. The surgeon has said by doing the scope in hospital he can take the biopsies down to the lab himself and talk to the pathologist.
The other advantage is that should nothing show on the scope then there are visiting paed gastroenterologists from Auckland who come to Wellington and he can discuss the case with them and all the info is in the one file.
So while I have a severe allergic reaction to Wellington Hospital I have to suck it up and manage it for T's benefit because this is the only way in this stupid country to access the paed specialists to get the best results for T.
And it's all about T.
He has prescribed T omeprazole and mylanta - working on the basis that something's inflamed inside and that's why he's having the problems.
So we3'll give it a whirl and see what happens, even though he has spun me the old old line of omeprazole having no side effects and completely safe for a life time - um...not so...and as I said to him, I've done my reading on this stuff.
But again, we're ticking boxes, ruling things in or out.
Frustratingly he has looked at T and said he thinks he's nicely in proportion and looks like he's holding his own and energy levels are fine. This is the kid who isn't concentrating anywhere near as long as he used to, can't make much headway on his school work, can't play for as long as he used to, is resting much of the time, and has even spent the past 2 Sundays crying in my arms as he's tired and wants to go home - yet, the surgeon who attends the same Mass, has somehow missed this.
I did say that it's taking a lot of work to keep T in this condition and he just smiled. But T's fragility has got to the point where I can't even have a shower without him being in tears - it was literally 10 mins this morning.
The over tired, fragile child wail rises at relentlessly regular intervals in this household.
So I guess we're looking at inflammation caused by SOMETHING as yet unknown - most likely culprit is allergies, or some kind of subtle narrowing which didn't show up on the sheer unmitigated disaster which was his barium 'swallow'.
Allergic oesophagitis or EE can be treated with steroids to deal to the initial inflammation and then a restricted diet there after.
I just want my happy T back, my T who was starting the day wanting to do schoolwork, my T who would punch his brothers instead of just sit and cry if they annoyed him. I want my wonderful eater back. I want the invigorating success and voyage of discovery we were having unpacking the depths of this child who was finally painfree and thriving.
I don't want to be waiting, losing more time, watching him decline and fall further behind again. We've been losing time, waiting for doctors ever since this kid was born. But, yet again, you can't hurry the system.
At least we have a good surgeon and paed behind us this time - even if every fibre of my being is screaming to just get ON WITH IT AND FIX HIM!
My version of groundhog day consists of waiting for doctors, seeing doctors, going to chemists, organising follow up appointments - oh and the odd bit of research in between!
And so to T news - we saw the surgeon today and he is happy that the wrap is in place, that there is no gross reflux, that the wrap is relaxing to let food through, the stomach has good capacity and that there are no obvious obstructions in the oesophagus.
He has said there is nothing surgical he can offer - if he went in there he wouldn't know what to operate ON!
However - we're all agreed that something is not right. And so T is now on the list for a scope and biopsy. While nothing showed up on the barium as needing dilation he said he may well put a dilator down anyway on the off chance while he's in there.
We are stuck in the public system and all the waiting that entails because, just as the hospital has the only paed radiologist south of Taupo, so the hospital has the only paed pathologist. The surgeon has said by doing the scope in hospital he can take the biopsies down to the lab himself and talk to the pathologist.
The other advantage is that should nothing show on the scope then there are visiting paed gastroenterologists from Auckland who come to Wellington and he can discuss the case with them and all the info is in the one file.
So while I have a severe allergic reaction to Wellington Hospital I have to suck it up and manage it for T's benefit because this is the only way in this stupid country to access the paed specialists to get the best results for T.
And it's all about T.
He has prescribed T omeprazole and mylanta - working on the basis that something's inflamed inside and that's why he's having the problems.
So we3'll give it a whirl and see what happens, even though he has spun me the old old line of omeprazole having no side effects and completely safe for a life time - um...not so...and as I said to him, I've done my reading on this stuff.
But again, we're ticking boxes, ruling things in or out.
Frustratingly he has looked at T and said he thinks he's nicely in proportion and looks like he's holding his own and energy levels are fine. This is the kid who isn't concentrating anywhere near as long as he used to, can't make much headway on his school work, can't play for as long as he used to, is resting much of the time, and has even spent the past 2 Sundays crying in my arms as he's tired and wants to go home - yet, the surgeon who attends the same Mass, has somehow missed this.
I did say that it's taking a lot of work to keep T in this condition and he just smiled. But T's fragility has got to the point where I can't even have a shower without him being in tears - it was literally 10 mins this morning.
The over tired, fragile child wail rises at relentlessly regular intervals in this household.
So I guess we're looking at inflammation caused by SOMETHING as yet unknown - most likely culprit is allergies, or some kind of subtle narrowing which didn't show up on the sheer unmitigated disaster which was his barium 'swallow'.
Allergic oesophagitis or EE can be treated with steroids to deal to the initial inflammation and then a restricted diet there after.
I just want my happy T back, my T who was starting the day wanting to do schoolwork, my T who would punch his brothers instead of just sit and cry if they annoyed him. I want my wonderful eater back. I want the invigorating success and voyage of discovery we were having unpacking the depths of this child who was finally painfree and thriving.
I don't want to be waiting, losing more time, watching him decline and fall further behind again. We've been losing time, waiting for doctors ever since this kid was born. But, yet again, you can't hurry the system.
At least we have a good surgeon and paed behind us this time - even if every fibre of my being is screaming to just get ON WITH IT AND FIX HIM!
Thursday, September 2, 2010
The ephemeral nature of internet communities
Bear with me here as I wax philosophical for a moment.
Life can be hard when you are a square peg in a round hole.
Everyone needs to feel a sense of community, to feel connected, even at the risk of sounding corny - to have a place where everyone knows your name.
Everyone has moments, time periods in their lives when they don't fit where they expected to, where they feel isolated, a sense of no community - perhaps even when no one actually understands.
In reality no one CAN understand exactly what someone is going through, even if they have been through the same or a similar experience. No one has the same life experience, baggage, strengths, weaknesses to bring to bear on the situation and so no one handles the same life experiences in the same way.
But total isolation, not fitting anywhere, isn't good for someone. You can become too insular, too closed in on yourself, issues can rapidly appear insurmountable. An imperfect fit is better than no fit. That's where multiple groups can come in.
I'm part of an on-line community for those affected by prematurity, I'm part of an on-line community for parents of children with feeding difficulties, I'm part of the local homeschooling association. We have been part of a local support group for families affected by autistic spectrum disorders. And I'm part of an on-line community brought together by either health needs or parenting interests. This on-line community also has an interesting overlap in that those locally meet up in real life as well.
But all of these groups have pluses and minuses - ways in which you do but don't belong.
The prematurity groups are perennially affected by the 'preemier than thou' syndrome. It's controlled but always there. When you have late prem children then often it is hard to fit in, people feel 'it's not really premature, this is' etc.
The feeding difficulties group is interesting - things are well kept under wraps but there is a demarcation between those with tube fed kids and those who are not. I straddle both camps with N and T - although perhaps not for much longer. There is also the issue that both of these groups are largely US based - medications, interventions available, support, supplies are all very different. You can post frustrated that your child won't drink x formula and how on earth do you flavour the repulsive stuff and discover that the 2 formulas you have to choose from are part of around 6-8 options they have there and flavouring modules are easy to make it palatable - only New Zealand doesn't fund them any more so they simply aren't available. Sympathy is available but suggestions for medications, foods and therapies are not.
So we home school - immediately that makes a gulf between us and others. One of the stock questions any adult asks a child is - what school do you go to? That community of parents is no longer available.
The home school group organises events for home schooled children. But due to T's fatigue levels (needed afternoon naps until nearly 5) our participation was severely limited to almost non-existant. I had hoped that, after getting through the winter, we could take a larger part. However the group has mostly moved to events which carry costs, an afternoon when the boys have swimming - and T is no longer up to doing much at all.
The ASD group was very helpful in coming to grips with W's situation. Anyone who knows me I like to be able to help those I can with what we've learnt along our journey and so that was good too. But, a bit like the prematurity forums - life comes down to tin tacks and how affected your child is. P and I used to come out being intensely grateful that W is as good as he is. But that didn't help with the areas he - and so we - needed support in. Once we started home schooling he improved - and the vast majority of the time at the meetings was taken up with school issues which were now a non-event for us.
As P and I learnt as W's issues became more and more obvious - friends don't know how to cope with a child who clearly has issues, how to cope with worn and embattled parents, parents who have to focus on their child/children and constantly fight for what they need, spend hours researching, booked up with specialist appointments, limited in their socialising ability by their child's needs.
Those friends who do not yet have children often cannot comprehend this world and those who are coming up to having children are often subconsciously afraid, afraid to see what could go wrong, afraid that somehow they could have their chances contaminated by our bad luck. Friends often drift away.
P and I can count on one hand the friends who have stayed around despite the differences, the gulf of tiredness and child obstacles in the way to being there for others - socially as well as emotionally. It is hard to be there emotionally for others when you are constantly juggling intense demands for your own children - and let's face it - if you, as the parent aren't there for them then who is going to be?
And so our 'normal' friends, with 'normal' kids are few and far between. The 'normal parenting world' is behind a curtain somewhere. I can see it in a shadowy form, I get to use aspects of it in my daily life too but it's like a hazy mirror.
On-line groups, especially international ones are good for the embattled 'special needs parent'. There's always someone who can support the person in need so it's not always up to you, you can be there when you get the moment - regardless of the hour.
Some may say that that support isn't real, can't make a difference - but trust me, when it feels like you are the only one in the world to ever face this particular challenge - just having someone say 'Yes, I've heard of this, I've dealt with this or know someone who has', to have an email in your box saying 'Yep, you are right, that really does suck' really does help, give you a lift and make you realise that yes, you can and will keep on keeping on - even if it is two steps forwards, one step back.
My on-line 'normal' parents group was a life line. Because it was mostly on-line it had all the benefits of that and the real life meet ups gave a fairly safe place where aspects of the kids were understood because they were forewarned - but the kids could also just be kids.
So where do I fit? Where do I sit least uneasily? Where will be the fewest blisters and friction burns? Because, let's face it, no one gets on all the time and as email is a very blunt medium misunderstandings, disagreements and eventually fights inevitably break out.
Because you aren't speaking face to face people say things they wouldn't otherwise dream of saying, take implications that could not have been taken if you could see facial expressions, and because they are in written form you can come back to time and time again to be re-hurt, fester, cogitate over.
On-line groups also have the benefit and drawback of being easy to join and leave.
It's surprising how you come to depend on these groups in my situation - how these internet friends become your community, your support, your net.
Just as any parent - or person for that matter - have days when they just need somewhere to say they have had enough, they just want something to go right for once, to blow off some steam - so do I. However because I don't fit anywhere completely, comfortably - and because my options are limited, these groups become more significant. Precisely because you aren't face to face you open more, share more, feel like you are friends more - a bond.
And so when the inevitable happens in an on-line community and people fight, people leave it hurts - perhaps more intensely for those in my situation because it feels like a big door has shut, there's another aspect you are cut off from, just another group which exists that you don't fit into.
Sometimes, in an on-line community you get the major event, the implosion, you get a mass exodus - and you get left with a big sense of nothing left, of grieving although it feels silly to grieve for it. But it's another place you don't fit, you can't belong, where you are too different.
But maybe this is the nature of friendship today? What is friendship and how is it changing in today's world? It can't be unaffected by modern technology - everything else is after all! How many of us have people we barely connect to as friends on Facebook? If it really came to total crunch time how many of your 'friends' would stand up and be counted with and for you? Or how many have crossed your life path for varying lengths of time and moved on again but still we cling to that shell of momentary shared history?
For many people, this ephemeral nature of 'friendship', of community is easily managed, coped with. They have other opportunities and groups available to them. Perhaps when the group does the, all too frequently experienced, implosion, they are able to pick and choose who they maintain contacts with, with whom they can meet up.
For the 'special needs parent', the one with limited options, groups, time and energy this isn't so. The loss is bigger, magnified by the fact that it's not easily replaced.
As I said at the start - everyone needs a community, a place to belong, at the very least a place with the least friction burns.
Specific needs communities have their own drawbacks, internal competitions - and often the parents are embattled enough that they can't support anyone more at particular times as they are already paddling frantically to keep their own emotional boats afloat.
Normal needs communities have the major drawback that often you are speaking another language, you are an alien from another planet, the extent of what you manage on a day to day basis leaves them feeling like they have nothing they ought to complain about - losing them THEIR community and THEIR support base which they need too. You worry that your experiences, needs for support, simple venting are actually too much, too foreign, too needy in a normal world way for their group.
I have found, in my life, that while everyone needs somewhere to belong, when you straddle areas as I do, that it is a reality that groups come and go, your involvement waxes and wanes and that there are regular intervals in your life when it is simply you and your little bubble afloat on the ocean of day to day challenges and that right now you don't have anywhere to belong, nowhere is a fit.
You have to have the resources, strengths and experiences to draw on to keep on going and do it by yourself. And sometimes you have enough challenges on your plate that the loss of an imploding group is a grief and a challenge that stretches you to the max - one that maybe makes you realise the ephemeral nature of the friendships you thought you had, or at least wonder if the current attempts at community are worth it.
So long as you have some kind of fit somewhere, and keep reaching out at times when you do have the reserves - and recognise the fact that for some of us - you will never really, truly fit.
Life can be hard when you are a square peg in a round hole.
Everyone needs to feel a sense of community, to feel connected, even at the risk of sounding corny - to have a place where everyone knows your name.
Everyone has moments, time periods in their lives when they don't fit where they expected to, where they feel isolated, a sense of no community - perhaps even when no one actually understands.
In reality no one CAN understand exactly what someone is going through, even if they have been through the same or a similar experience. No one has the same life experience, baggage, strengths, weaknesses to bring to bear on the situation and so no one handles the same life experiences in the same way.
But total isolation, not fitting anywhere, isn't good for someone. You can become too insular, too closed in on yourself, issues can rapidly appear insurmountable. An imperfect fit is better than no fit. That's where multiple groups can come in.
I'm part of an on-line community for those affected by prematurity, I'm part of an on-line community for parents of children with feeding difficulties, I'm part of the local homeschooling association. We have been part of a local support group for families affected by autistic spectrum disorders. And I'm part of an on-line community brought together by either health needs or parenting interests. This on-line community also has an interesting overlap in that those locally meet up in real life as well.
But all of these groups have pluses and minuses - ways in which you do but don't belong.
The prematurity groups are perennially affected by the 'preemier than thou' syndrome. It's controlled but always there. When you have late prem children then often it is hard to fit in, people feel 'it's not really premature, this is' etc.
The feeding difficulties group is interesting - things are well kept under wraps but there is a demarcation between those with tube fed kids and those who are not. I straddle both camps with N and T - although perhaps not for much longer. There is also the issue that both of these groups are largely US based - medications, interventions available, support, supplies are all very different. You can post frustrated that your child won't drink x formula and how on earth do you flavour the repulsive stuff and discover that the 2 formulas you have to choose from are part of around 6-8 options they have there and flavouring modules are easy to make it palatable - only New Zealand doesn't fund them any more so they simply aren't available. Sympathy is available but suggestions for medications, foods and therapies are not.
So we home school - immediately that makes a gulf between us and others. One of the stock questions any adult asks a child is - what school do you go to? That community of parents is no longer available.
The home school group organises events for home schooled children. But due to T's fatigue levels (needed afternoon naps until nearly 5) our participation was severely limited to almost non-existant. I had hoped that, after getting through the winter, we could take a larger part. However the group has mostly moved to events which carry costs, an afternoon when the boys have swimming - and T is no longer up to doing much at all.
The ASD group was very helpful in coming to grips with W's situation. Anyone who knows me I like to be able to help those I can with what we've learnt along our journey and so that was good too. But, a bit like the prematurity forums - life comes down to tin tacks and how affected your child is. P and I used to come out being intensely grateful that W is as good as he is. But that didn't help with the areas he - and so we - needed support in. Once we started home schooling he improved - and the vast majority of the time at the meetings was taken up with school issues which were now a non-event for us.
As P and I learnt as W's issues became more and more obvious - friends don't know how to cope with a child who clearly has issues, how to cope with worn and embattled parents, parents who have to focus on their child/children and constantly fight for what they need, spend hours researching, booked up with specialist appointments, limited in their socialising ability by their child's needs.
Those friends who do not yet have children often cannot comprehend this world and those who are coming up to having children are often subconsciously afraid, afraid to see what could go wrong, afraid that somehow they could have their chances contaminated by our bad luck. Friends often drift away.
P and I can count on one hand the friends who have stayed around despite the differences, the gulf of tiredness and child obstacles in the way to being there for others - socially as well as emotionally. It is hard to be there emotionally for others when you are constantly juggling intense demands for your own children - and let's face it - if you, as the parent aren't there for them then who is going to be?
And so our 'normal' friends, with 'normal' kids are few and far between. The 'normal parenting world' is behind a curtain somewhere. I can see it in a shadowy form, I get to use aspects of it in my daily life too but it's like a hazy mirror.
On-line groups, especially international ones are good for the embattled 'special needs parent'. There's always someone who can support the person in need so it's not always up to you, you can be there when you get the moment - regardless of the hour.
Some may say that that support isn't real, can't make a difference - but trust me, when it feels like you are the only one in the world to ever face this particular challenge - just having someone say 'Yes, I've heard of this, I've dealt with this or know someone who has', to have an email in your box saying 'Yep, you are right, that really does suck' really does help, give you a lift and make you realise that yes, you can and will keep on keeping on - even if it is two steps forwards, one step back.
My on-line 'normal' parents group was a life line. Because it was mostly on-line it had all the benefits of that and the real life meet ups gave a fairly safe place where aspects of the kids were understood because they were forewarned - but the kids could also just be kids.
So where do I fit? Where do I sit least uneasily? Where will be the fewest blisters and friction burns? Because, let's face it, no one gets on all the time and as email is a very blunt medium misunderstandings, disagreements and eventually fights inevitably break out.
Because you aren't speaking face to face people say things they wouldn't otherwise dream of saying, take implications that could not have been taken if you could see facial expressions, and because they are in written form you can come back to time and time again to be re-hurt, fester, cogitate over.
On-line groups also have the benefit and drawback of being easy to join and leave.
It's surprising how you come to depend on these groups in my situation - how these internet friends become your community, your support, your net.
Just as any parent - or person for that matter - have days when they just need somewhere to say they have had enough, they just want something to go right for once, to blow off some steam - so do I. However because I don't fit anywhere completely, comfortably - and because my options are limited, these groups become more significant. Precisely because you aren't face to face you open more, share more, feel like you are friends more - a bond.
And so when the inevitable happens in an on-line community and people fight, people leave it hurts - perhaps more intensely for those in my situation because it feels like a big door has shut, there's another aspect you are cut off from, just another group which exists that you don't fit into.
Sometimes, in an on-line community you get the major event, the implosion, you get a mass exodus - and you get left with a big sense of nothing left, of grieving although it feels silly to grieve for it. But it's another place you don't fit, you can't belong, where you are too different.
But maybe this is the nature of friendship today? What is friendship and how is it changing in today's world? It can't be unaffected by modern technology - everything else is after all! How many of us have people we barely connect to as friends on Facebook? If it really came to total crunch time how many of your 'friends' would stand up and be counted with and for you? Or how many have crossed your life path for varying lengths of time and moved on again but still we cling to that shell of momentary shared history?
For many people, this ephemeral nature of 'friendship', of community is easily managed, coped with. They have other opportunities and groups available to them. Perhaps when the group does the, all too frequently experienced, implosion, they are able to pick and choose who they maintain contacts with, with whom they can meet up.
For the 'special needs parent', the one with limited options, groups, time and energy this isn't so. The loss is bigger, magnified by the fact that it's not easily replaced.
As I said at the start - everyone needs a community, a place to belong, at the very least a place with the least friction burns.
Specific needs communities have their own drawbacks, internal competitions - and often the parents are embattled enough that they can't support anyone more at particular times as they are already paddling frantically to keep their own emotional boats afloat.
Normal needs communities have the major drawback that often you are speaking another language, you are an alien from another planet, the extent of what you manage on a day to day basis leaves them feeling like they have nothing they ought to complain about - losing them THEIR community and THEIR support base which they need too. You worry that your experiences, needs for support, simple venting are actually too much, too foreign, too needy in a normal world way for their group.
I have found, in my life, that while everyone needs somewhere to belong, when you straddle areas as I do, that it is a reality that groups come and go, your involvement waxes and wanes and that there are regular intervals in your life when it is simply you and your little bubble afloat on the ocean of day to day challenges and that right now you don't have anywhere to belong, nowhere is a fit.
You have to have the resources, strengths and experiences to draw on to keep on going and do it by yourself. And sometimes you have enough challenges on your plate that the loss of an imploding group is a grief and a challenge that stretches you to the max - one that maybe makes you realise the ephemeral nature of the friendships you thought you had, or at least wonder if the current attempts at community are worth it.
So long as you have some kind of fit somewhere, and keep reaching out at times when you do have the reserves - and recognise the fact that for some of us - you will never really, truly fit.
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