And so how many of you actually make New Year's Resolutions?
And more significantly how many actually manage to keep them?
Looking back on 2010 I realised that in fact we leave behind a whole decade tomorrow.
What a decade it's been!
I've had 2 children in the past decade, run the gauntlet of multiple health problems with them all, had special needs diagnosed in all of them and technically got them all to school age!
At least 2 of them have had a crack at dying but we've managed to pull them back, we've had 6 surgeries - soon to be 7 and I've developed my own filing system to keep all the medical info straight and things progressing.
The kids have lost 4 great grandparents, 2 great uncles and 2 cousins.
2 cousins have also been born in that decade.
It's been an amazing, frustrating, scary, wonderful, full on decade.
I've learnt and changed so much from a mum of one little 18 month old to where I am now. My parenting, management skills, medical skills have changed out of sight.
The path we have walked has been mindblowing.
And so I also look back on this current year just ending.
2005 was not a kind year to us with so many issues with T.
2009 started and ended with surgery for kids.
2010 started well and I went into it positively and hopefully.
My own resolutions of 2010 being the year where we got T off the pump and N eating as well looked reasonable aspirations. We had the medical support people in place, we were finally totally reflux free thanks to W's surgery in Dec 2009.
And the pressures just grew and grew.
Late April/early May T started to have his eating difficulties and by July he was seeing the surgeon again.
July we started this, by now completely ridiculous, litany of deaths.
Other family pressures grew and grew.
T continued to deteriorate and N started circling the drain as well.
W has had a few issues but nothing major really - thank heavens for that or some of my parenting confidence would have been significantly shaken!
And so where am I on my New Year's Resolutions for 2010?
Well, far from having his "Bye Bye pump party" T is totally dependent and the freedom from home and his blossoming energy levels that we enjoyed for a year have vanished.
Far from having N eating normally and being free from those wretched purple Fortisip lids which pop up everywhere and those plastic straw wrappers which embed themselves in my washing machine, stick to people's feet and travel the length and breadth of the house we are now at the point of surgery to put a tube in.
So epic fail on those two aims!
There were the standard aims of losing weight - which I did only to put it back on with very late nights, sleep deprivation and chocolate cravings.
I also had the aim of putting the best of the kids' photos onto Flickr and setting up albums for each of them so you can find the pics quickly and easily. I have achieved about 1/3rd of that aim!
And so what are my aims and aspirations for 2011?
Fewer doctors would be a lovely start but exceedingly unlikely! So better not aim for that one!!
I do want to get all the pictures backed up. So that will continue.
By this time next year I do want to have made significant strides in N's eating.
I'm under no allusions that this is a very long term project and will probably take a couple of years to achieve. Even if it had gone according to plan with T we would only now, 2 years post op, be comfortable in taking the tube out I think.
But if we're taking this drastic step then we need to see movement.
By this time next year I want, no need, a diagnosis as to what's going on for T and a medical plan to get us back on track - and to be progressing down said track.
We have managed to maintain eating skills so far and certainly maintain interest and desire to eat so once he can, yet again do it without pain we shouldn't have too hard a road to regain the lost ground.
Personally - better health and finances would be good. I still lust after an ipad - would make things masses easier keeping the kids' medical records sorted, food diaries etc if I could do without clear files and paper records. But I'd like to be at the point where I lust after one because it's a cool thing to play with! Instead of lugging folders to specialist appts!
But most of all I want a happier year, fewer downs and more highs for my immediate and extended families.
2010 has been a roller coaster year to rival the NICU - calm and control is where I aim for 2011!
Wishing you all a merry go round year rather than a roller coaster!
Our on-going saga with life with 3 prematurely born boys. The fun doesn't end at the NICU door, even for 'late' preemies.
Friday, December 31, 2010
Monday, December 27, 2010
Collective noun for mass death, destruction and loss?
This post is one that has been filtering through in my mind for a while now but hopefully isn't too rambling!
People who know us know we have had an incredibly tough month this month with twin nieces being born and dying as well as an uncle dying rather more rapidly than expected. Burying 3 loved ones the week before Christmas does NOT make a good run up for the kids!
It leaves you will a lot to process too - too much emotion to do in any kind of progressive way I think, just a kind of total blanket of grief which keeps jumping out and putting it's arms around you at unexpected times. You don't really know what sparked it, or even which person you are crying for - you just are.
With the twins there is so much mixed in with the grief - they fell victim to the evils of prematurity. There but for the grace of God go we.
Our own children's lives have been at stake a number of times over the years.
We may have been on the wrong side of the stats many many times in our parenting lives but we were on the right side on the most crucial stat of all.
Watching the pain and terror of someone we care about riding the NICU roller coaster brought back strong memories. While we never rode it in such intensity, with such a drawnout life and death struggle we have ridden it unrelentingly over the years instead.
But thrown in with all of this is other grief, other loss.
W had an assessment done recently and the results came through in the middle of the maelstrom. It is very clear from this that going back to a mainstream school will never be on the cards. His need/deficit profile is such that for him to have any chance of succeeding in life that he will need very specific conditions - and thankfully we can largely supply them in the family environment.
But once places re-open next year we will have to start the process of getting him assessed by the Special Education psychs and getting paperwork in order for an enrollment in Correspondence School.
In addition to this we had another appointment with the kids' paed surgeon - largely discussing N this time but touching on T too.
The last appointment we had with the surgeon he had changed his mind on the approach to N's eating difficulties and was not going to place the promised tube.
In the interval between appointments we saw the endocrinologists at the hospital and had various tests done. Other than some bloods which were sent to another part of NZ thanks to our lab techs being on strike and the results not being back nearly a month after the blood draw - all came out fine.
We personally had written a letter to both the paed and surgeon and had W's key worker write a letter about what she has seen of N's behaviour when eating and not eating. The two combined, added to by the endocrinologist letter saying tube feeding would be a reasonable option to deal with the current situation - were enough to cause a change of plan.
N is now to have surgery on 10 Feb.
The surgeon is clearly unhappy and had clearly wanted to avoid it.
I don't like him being unhappy, I don't like essentially forcing someone into something, particularly one as drastic as this and most of all I don't like needing to do this either. If there were any other way left I'd grab it with both hands before trying this. I HATE the fact we've had to throw in the towel, lost the battle, that reflux history and feeding difficulties have triumphed.
The surgeon is of the opinion if we just wait long enough it'll all come out in the wash. We have waited and tried everything for 3 years and it has now got to the point that the behavioural, social and learning impacts and the added stress to the whole family are such that yes, waiting might get us there in the end but the cost will be too high.
I grieve this loss. As a parent, right from the very start of your child's life your role is to nurture them, help them grow and thrive. Feed them physically, emotionally and mentally. We, as a society, use food to show love, celebrate special occasions, to support one another through hard times.
When you can't feed your child it hurts - badly.
Then you start collecting titles like Failure To Thrive and the sense of failure is compounded.
People talk about artificial feeding - meaning bottles and formula. There is nothing much more artificial than connecting tubes to your child's stomach and feeding them that way.
I love and loathe T's tube in pretty much equal part. I love what it has enabled T to achieve in the nearly 2 years since he got it but I hate that he still needs it, that he needed it at all, and that it may be part of his current problems but that it's, in the surgeon's words - highly dangerous to contemplate removing it now as he's so dependent due to the other GI issues.
The idea we'll be juggling two on tubes, two lots to hook up each night, two lots of supplies to keep straight makes me feel so incredibly sad.
But I can only look forward to seeing the improvements and added learning for N that we saw with T.
And so there are many forms of grief, many ways your vision and life plans can be altered and changed, many forms of loss for your child not just having them actually die.
There are different forms of the rollercoaster and the long version is no less intense and painful than the short. The long version though does have increased chances for those fleeting moments of achievement, 'normality' and peace.
Those moments are what we have to hang on to, to give the strength, courage and perseverance to keep on, fight the next fight, jump the next hoop, make the next plan.
I would like to close this post with what I wanted to say at the twins' funeral.
I couldn't speak then, in large part because T was asleep against me at the time. It is yet another example of our life and our losses that a 5 1/2 year old didn't have the stamina that day for an hour long funeral in the middle of the afternoon (we'd delayed his tube feed due to timing and he clearly can't handle that.)
Names of course are removed.
J and M,
Over the past few weeks I've worked hard to rationalise and explain these events to my boys. But there is no way really - it's totally and completely unfair.
My mind keeps going to the concept of love being stronger than death - we all know from experience that we can continue to love those no longer with us. The grave is no impediment to that.
But if love could conquer death then we wouldn't be here today.
But the evil reach of prematurity is long and unrelenting. S and A can now be at rest.
If I could have waved a wand to stop the roller coaster and rewind time I'd have done that just as fast for you as I would for my boys.
J and M - remember that regardless of what has happened you are parents.
You may not have the day to day duties you dreamed of but you were, are and always will be parents.
J - it was a privilege to watch you grow into a mothering role in what has to be the most foreign and alien environment in the world. I was privileged to be there when you got to touch S for the first time and honoured when you invited me to touch A. The memory of how she stretched out to continue contact with my finger as I took it away will be treasured for ever.
Rest assured that none of us will forget S and A - my boys already talk of their angel cousins.
S and A - so tiny, so loved, so missed.
People who know us know we have had an incredibly tough month this month with twin nieces being born and dying as well as an uncle dying rather more rapidly than expected. Burying 3 loved ones the week before Christmas does NOT make a good run up for the kids!
It leaves you will a lot to process too - too much emotion to do in any kind of progressive way I think, just a kind of total blanket of grief which keeps jumping out and putting it's arms around you at unexpected times. You don't really know what sparked it, or even which person you are crying for - you just are.
With the twins there is so much mixed in with the grief - they fell victim to the evils of prematurity. There but for the grace of God go we.
Our own children's lives have been at stake a number of times over the years.
We may have been on the wrong side of the stats many many times in our parenting lives but we were on the right side on the most crucial stat of all.
Watching the pain and terror of someone we care about riding the NICU roller coaster brought back strong memories. While we never rode it in such intensity, with such a drawnout life and death struggle we have ridden it unrelentingly over the years instead.
But thrown in with all of this is other grief, other loss.
W had an assessment done recently and the results came through in the middle of the maelstrom. It is very clear from this that going back to a mainstream school will never be on the cards. His need/deficit profile is such that for him to have any chance of succeeding in life that he will need very specific conditions - and thankfully we can largely supply them in the family environment.
But once places re-open next year we will have to start the process of getting him assessed by the Special Education psychs and getting paperwork in order for an enrollment in Correspondence School.
In addition to this we had another appointment with the kids' paed surgeon - largely discussing N this time but touching on T too.
The last appointment we had with the surgeon he had changed his mind on the approach to N's eating difficulties and was not going to place the promised tube.
In the interval between appointments we saw the endocrinologists at the hospital and had various tests done. Other than some bloods which were sent to another part of NZ thanks to our lab techs being on strike and the results not being back nearly a month after the blood draw - all came out fine.
We personally had written a letter to both the paed and surgeon and had W's key worker write a letter about what she has seen of N's behaviour when eating and not eating. The two combined, added to by the endocrinologist letter saying tube feeding would be a reasonable option to deal with the current situation - were enough to cause a change of plan.
N is now to have surgery on 10 Feb.
The surgeon is clearly unhappy and had clearly wanted to avoid it.
I don't like him being unhappy, I don't like essentially forcing someone into something, particularly one as drastic as this and most of all I don't like needing to do this either. If there were any other way left I'd grab it with both hands before trying this. I HATE the fact we've had to throw in the towel, lost the battle, that reflux history and feeding difficulties have triumphed.
The surgeon is of the opinion if we just wait long enough it'll all come out in the wash. We have waited and tried everything for 3 years and it has now got to the point that the behavioural, social and learning impacts and the added stress to the whole family are such that yes, waiting might get us there in the end but the cost will be too high.
I grieve this loss. As a parent, right from the very start of your child's life your role is to nurture them, help them grow and thrive. Feed them physically, emotionally and mentally. We, as a society, use food to show love, celebrate special occasions, to support one another through hard times.
When you can't feed your child it hurts - badly.
Then you start collecting titles like Failure To Thrive and the sense of failure is compounded.
People talk about artificial feeding - meaning bottles and formula. There is nothing much more artificial than connecting tubes to your child's stomach and feeding them that way.
I love and loathe T's tube in pretty much equal part. I love what it has enabled T to achieve in the nearly 2 years since he got it but I hate that he still needs it, that he needed it at all, and that it may be part of his current problems but that it's, in the surgeon's words - highly dangerous to contemplate removing it now as he's so dependent due to the other GI issues.
The idea we'll be juggling two on tubes, two lots to hook up each night, two lots of supplies to keep straight makes me feel so incredibly sad.
But I can only look forward to seeing the improvements and added learning for N that we saw with T.
And so there are many forms of grief, many ways your vision and life plans can be altered and changed, many forms of loss for your child not just having them actually die.
There are different forms of the rollercoaster and the long version is no less intense and painful than the short. The long version though does have increased chances for those fleeting moments of achievement, 'normality' and peace.
Those moments are what we have to hang on to, to give the strength, courage and perseverance to keep on, fight the next fight, jump the next hoop, make the next plan.
I would like to close this post with what I wanted to say at the twins' funeral.
I couldn't speak then, in large part because T was asleep against me at the time. It is yet another example of our life and our losses that a 5 1/2 year old didn't have the stamina that day for an hour long funeral in the middle of the afternoon (we'd delayed his tube feed due to timing and he clearly can't handle that.)
Names of course are removed.
J and M,
Over the past few weeks I've worked hard to rationalise and explain these events to my boys. But there is no way really - it's totally and completely unfair.
My mind keeps going to the concept of love being stronger than death - we all know from experience that we can continue to love those no longer with us. The grave is no impediment to that.
But if love could conquer death then we wouldn't be here today.
But the evil reach of prematurity is long and unrelenting. S and A can now be at rest.
If I could have waved a wand to stop the roller coaster and rewind time I'd have done that just as fast for you as I would for my boys.
J and M - remember that regardless of what has happened you are parents.
You may not have the day to day duties you dreamed of but you were, are and always will be parents.
J - it was a privilege to watch you grow into a mothering role in what has to be the most foreign and alien environment in the world. I was privileged to be there when you got to touch S for the first time and honoured when you invited me to touch A. The memory of how she stretched out to continue contact with my finger as I took it away will be treasured for ever.
Rest assured that none of us will forget S and A - my boys already talk of their angel cousins.
S and A - so tiny, so loved, so missed.
Monday, December 13, 2010
You know you are a Prem Parent when...
- you have your GP on speed dial on the home phone and it's one of the first in your mobile!
- you are on first name basis with the GP's receptionist.
- you know the receptionist at the hospital paed outpatients by name.
- you get recognised by hospital nurses and theatre staff.
- you get lost in a mall carpark but can navigate round a hospital like you have an inbuilt GPS.
- you have your local pharmacy number in your phone too!
- your calendar has more medical appointments than playdates.
- in discussing your child who is crying in pain and saying he can't breathe when he lies down, you comment he's clearly moving air so we don't need an ambulance for THAT!
- you know your child's own normal temperature - W runs a bit low, N runs a bit hot and T's in the middle!
- your Christmas preparations have making sure you have repeats dispensed, a final weigh in with the GP booked, and that you have about a month's worth of specialised formulas in stock because of the Christmas close down at pharmaceutical warehouses on the top of your list - oh yeah and presents had better be organised...
- when you have the re-opening date of your GP written on the calendar - and the first appt of the New Year already booked.
- when you know the coming year will simply start the medical round about all over again...
- you are on first name basis with the GP's receptionist.
- you know the receptionist at the hospital paed outpatients by name.
- you get recognised by hospital nurses and theatre staff.
- you get lost in a mall carpark but can navigate round a hospital like you have an inbuilt GPS.
- you have your local pharmacy number in your phone too!
- your calendar has more medical appointments than playdates.
- in discussing your child who is crying in pain and saying he can't breathe when he lies down, you comment he's clearly moving air so we don't need an ambulance for THAT!
- you know your child's own normal temperature - W runs a bit low, N runs a bit hot and T's in the middle!
- your Christmas preparations have making sure you have repeats dispensed, a final weigh in with the GP booked, and that you have about a month's worth of specialised formulas in stock because of the Christmas close down at pharmaceutical warehouses on the top of your list - oh yeah and presents had better be organised...
- when you have the re-opening date of your GP written on the calendar - and the first appt of the New Year already booked.
- when you know the coming year will simply start the medical round about all over again...
Wednesday, December 1, 2010
Just so tired...
Well and here we are again.
I remain convinced that if my life was written into a soap opera plot the writers would be told that it couldn't possibly be screened as it's simply too unbelievable!
My family and I must have truly annoyed some cosmic being this year - death and disaster have flooded in in the last few months.
On top of P's grandfather dying in July in a traffic crash we now have my uncle rapidly approaching death. In the same week he has been deteriorating rapidly we have had the paradoxical situation of the boys finally getting cousins - W is 12 so it's been a long time in coming!
But it's paradoxical in that the twins are very very small, very premature and even though they are now 2 days old and doing surprisingly well their survival will remain in doubt for some time to come.
I've found witnessing the dramas and emotions of a premature birth from the side lines very difficult. It's brought up a huge number of emotions for me and, knowing what I do about the path ahead for my sister in law and brother in law, and their girls, I wish with all my heart I could protect them, stop this in it's tracks, somehow shield them from all I know is heading their way.
There is so much joy in the babies' arrival, and yet so much sadness in the future and even their current circumstances. They too will be running an ultra marathon, after they step off the roller coaster of the NICU.
But whatever support I can give them, help as they learn to parent in the parallel universe of the NICU, support as the shoes drop later, encouragement to get involved with Early Intervention BEFORE they drop too far behind, friendship in the different parenting life they will be leading - anything I can offer and give in some small way makes our own path more meaningful, have slightly more point.
Just to add to the fun we have had problems with leaking pipes at home over the past month or so and today one of the mends burst! That's drama enough for any household but with T's daytime tube feeds we have to have water and so has made life more challenging on 3 separate occasions so far.
I discovered a pile of photos in my clearing up last night, some of the boys with P's grandfather, some from this time last year, T's birthday and slightly more current. I was saddened reviewing the photos of P's grandfather but shocked by the clear deterioration in T. He has become so much thinner in the face and you can see tiredness and pain in his eyes that had been such a permanent fixture until after his surgery. Typically the discovery of the photos has coincided with about 3 days of significant pain for T. He has regularly been crying inconsolably and at the slightest provocation. When I ask him what's wrong you alternately get the answer "I don't know!" or "I just hurt all over!"
To say it's heartbreaking is an understatement.
I did have a call from his surgeon today to explain some confusion over an appointment he'd said would happen before Christmas and now won't be able to happen until Feb next year. However he has discussed his case with the gastroenterologist and they have come up with a couple of drugs to try over the Christmas/New Year period. He has also said when he calls to tell me which drug we'll try he will also organise to book T in for an operation to move his feeding tube to a new site in the hopes that might relief some of the pain. This was an idea I'd floated at the last appointment and he was considering - so obviously he's decided that it makes sense.
I'm pleased he's taking action and that there are a few things we can try but my heart sinks at the prospect of more surgery for T. This will be his 4th general anaesthetic in the space of 2 years or there abouts. It will also be my 7th time to take a kid to theatre in 3 and a half years.
But it's all better than the other reality niggling away at all of us - if nothing works then no one has any answers and the probability is that T may be left unable to eat solid food without extreme pain for the rest of his life.
There is also the prospect of N finally getting some help for his eating if we succeed in our final push to persuade the surgeon back into placing a tube for him too. That will be yet another surgery - not a gleeful prospect.
We saw an endocrinologist for N yesterday - a very thorough appointment which took over an hour - and they were running 40 mins late too!
N has had some bloods and an x-ray for bone age done but no one expects any problems with those. The endocrinologist did say, in contemplating our predicament with N, that in his view placing a gastrostomy would be a 'reasonable step to take.'
He did say he would write to the surgeon with his findings and include that opinion and so hopefully that combined with a detailed but clear letter I have written and a letter from W's therapist about what she has noticed in N's behaviour when he does and doesn't eat - we may be able to persuade him back into the surgery.
But I am tired, tired of the stresses of the behaviours, the crying, watching my child in pain.
I'm tired of guiding the children through life and death situations all the while processing it myself.
I'm tired of the appointments, the record keeping, lugging the file I keep on each child to the appointments.
I'm tired of no real answers to the problems.
I'm tired of being a nurse to the kids, being a therapist to the kids, of doling out the meds, doing the cleaning, sterilizing, washing, of doing the research and careful thinking to work with the doctors and specialists.
I'm tired of worrying about the money, the added costs of formulas, specially cooked and pureed food esp for T, the supply of dvds for him to make his feeds a little more bearable.
I'm tired of the chronic, no end in sight, lack of sleep.
I'm tired of the deep, inground worry for their futures, where they are headed and what and how right the next step is medically, socially, developmentally, emotionally.
I watch other parents and while, I'm sure they worry about their kids and have concerns for them - I just wish, just for a short while I could have their lives, where their kid's biggest worry is what's in their lunchbox for lunch, if their friend will be at school today, if they've actually learnt their spelling words.
When they don't have the GP on speed dial, their calendar is full of play dates not hospital appointments and the supermarket shop doesn't include a trip to the chemist next door to get the month's worth of formula, high cal feeds and gauze.
I'm sure juggling a normal household isn't a walk in the park, and I'm sure if I got to do that then I'd very rapidly complain about the small details too - but from the outside, looking in, it just looks so much simpler.
I remain convinced that if my life was written into a soap opera plot the writers would be told that it couldn't possibly be screened as it's simply too unbelievable!
My family and I must have truly annoyed some cosmic being this year - death and disaster have flooded in in the last few months.
On top of P's grandfather dying in July in a traffic crash we now have my uncle rapidly approaching death. In the same week he has been deteriorating rapidly we have had the paradoxical situation of the boys finally getting cousins - W is 12 so it's been a long time in coming!
But it's paradoxical in that the twins are very very small, very premature and even though they are now 2 days old and doing surprisingly well their survival will remain in doubt for some time to come.
I've found witnessing the dramas and emotions of a premature birth from the side lines very difficult. It's brought up a huge number of emotions for me and, knowing what I do about the path ahead for my sister in law and brother in law, and their girls, I wish with all my heart I could protect them, stop this in it's tracks, somehow shield them from all I know is heading their way.
There is so much joy in the babies' arrival, and yet so much sadness in the future and even their current circumstances. They too will be running an ultra marathon, after they step off the roller coaster of the NICU.
But whatever support I can give them, help as they learn to parent in the parallel universe of the NICU, support as the shoes drop later, encouragement to get involved with Early Intervention BEFORE they drop too far behind, friendship in the different parenting life they will be leading - anything I can offer and give in some small way makes our own path more meaningful, have slightly more point.
Just to add to the fun we have had problems with leaking pipes at home over the past month or so and today one of the mends burst! That's drama enough for any household but with T's daytime tube feeds we have to have water and so has made life more challenging on 3 separate occasions so far.
I discovered a pile of photos in my clearing up last night, some of the boys with P's grandfather, some from this time last year, T's birthday and slightly more current. I was saddened reviewing the photos of P's grandfather but shocked by the clear deterioration in T. He has become so much thinner in the face and you can see tiredness and pain in his eyes that had been such a permanent fixture until after his surgery. Typically the discovery of the photos has coincided with about 3 days of significant pain for T. He has regularly been crying inconsolably and at the slightest provocation. When I ask him what's wrong you alternately get the answer "I don't know!" or "I just hurt all over!"
To say it's heartbreaking is an understatement.
I did have a call from his surgeon today to explain some confusion over an appointment he'd said would happen before Christmas and now won't be able to happen until Feb next year. However he has discussed his case with the gastroenterologist and they have come up with a couple of drugs to try over the Christmas/New Year period. He has also said when he calls to tell me which drug we'll try he will also organise to book T in for an operation to move his feeding tube to a new site in the hopes that might relief some of the pain. This was an idea I'd floated at the last appointment and he was considering - so obviously he's decided that it makes sense.
I'm pleased he's taking action and that there are a few things we can try but my heart sinks at the prospect of more surgery for T. This will be his 4th general anaesthetic in the space of 2 years or there abouts. It will also be my 7th time to take a kid to theatre in 3 and a half years.
But it's all better than the other reality niggling away at all of us - if nothing works then no one has any answers and the probability is that T may be left unable to eat solid food without extreme pain for the rest of his life.
There is also the prospect of N finally getting some help for his eating if we succeed in our final push to persuade the surgeon back into placing a tube for him too. That will be yet another surgery - not a gleeful prospect.
We saw an endocrinologist for N yesterday - a very thorough appointment which took over an hour - and they were running 40 mins late too!
N has had some bloods and an x-ray for bone age done but no one expects any problems with those. The endocrinologist did say, in contemplating our predicament with N, that in his view placing a gastrostomy would be a 'reasonable step to take.'
He did say he would write to the surgeon with his findings and include that opinion and so hopefully that combined with a detailed but clear letter I have written and a letter from W's therapist about what she has noticed in N's behaviour when he does and doesn't eat - we may be able to persuade him back into the surgery.
But I am tired, tired of the stresses of the behaviours, the crying, watching my child in pain.
I'm tired of guiding the children through life and death situations all the while processing it myself.
I'm tired of the appointments, the record keeping, lugging the file I keep on each child to the appointments.
I'm tired of no real answers to the problems.
I'm tired of being a nurse to the kids, being a therapist to the kids, of doling out the meds, doing the cleaning, sterilizing, washing, of doing the research and careful thinking to work with the doctors and specialists.
I'm tired of worrying about the money, the added costs of formulas, specially cooked and pureed food esp for T, the supply of dvds for him to make his feeds a little more bearable.
I'm tired of the chronic, no end in sight, lack of sleep.
I'm tired of the deep, inground worry for their futures, where they are headed and what and how right the next step is medically, socially, developmentally, emotionally.
I watch other parents and while, I'm sure they worry about their kids and have concerns for them - I just wish, just for a short while I could have their lives, where their kid's biggest worry is what's in their lunchbox for lunch, if their friend will be at school today, if they've actually learnt their spelling words.
When they don't have the GP on speed dial, their calendar is full of play dates not hospital appointments and the supermarket shop doesn't include a trip to the chemist next door to get the month's worth of formula, high cal feeds and gauze.
I'm sure juggling a normal household isn't a walk in the park, and I'm sure if I got to do that then I'd very rapidly complain about the small details too - but from the outside, looking in, it just looks so much simpler.
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