So we're trucking along, Miss J's had a coldy type thing for a while, but she has had low lymphocytes so we know she's not likely to fight illness as well as she has in the past.
We had a follow-up with the cardiologist last week and he told us that her last bloods had shown slightly low platelets. He also told us that the surgery list has been insane (which we knew) this year and that he didn't know when her surgery would be. Her heart is unchanged though, apart from some slight narrowing of the aorta.
The last couple of visits to the oncologist have been mid-morning which has meant that the bloods we have had taken downstairs before we see her have always been running late and she tells us the previous results and says she'll let us know if anything's amiss with today's.
Today when the nurse took the bloods she was in a rush and she didn't spend 60 seconds holding on or asking me to hold it while she did paperwork, she just put a swab and a bandaid on it and sent us off. It didn't take Jacinta long to chew the bandaid off, which resulted in a comedy of errors as I attempted to stem the flow of steadily dripping blood drops while getting a new bandaid open and keeping it away from her attempts to grab it and pull it off, because she didn't want it on!
We bled all over ourselves and the table at the coffee shop, but that's what baby wipes are for, isn't it.
I mentioned this to the oncologist on our arrival and she looked at me askance and asked a few more pertinent questions. She mentioned that last time's bloods had platelets at 90 and that this could have just been because she was sick at the time, but that if this time's were lower again that they'd have to do a bone marrow aspirate to rule anything out.
She did of course insist that it would be so incredibly unlikely that she could have relapsed since "Downs kids" are exquisitely sensitive to treatment. (She always says that. I haven't really fully cleared up what she means, but I know it means that the cure rate is pretty much nearly 100%)
Still, she asked if we'd like to hang around for the results. I said we certainly would, and we went downstairs to the Parents' Resource and Respite Centre to eat, move all the toys somewhere else and have my phone cease working.
While down there I had a think about the possible revised plan for if Jacinta had relapsed. It really doesn't get much to get the cogs ticking over so you're making plans for how the day, the week, the month and the year will all get organised if the result comes back one way instead of the other. I pretty much had it sussed which day the bone marrow aspirate would be, how we'd organise the children, what food I'd leave in the freezer etc. All except how we'd break it to the children.
We went upstairs again, 45 minutes later. We ran into two other post-treatment patients. It was lovely to have a chat and to be able to tell someone who gets it that we were waiting on results to see if we'd need another BMA.
Between patients the Oncologist came out and said the results are perfect.
Big. Sigh. Of Relief.
As a side issue, it came to my attention that when they do open heart surgery it is common practice to remove some or all of the thymus gland, the one responsible for lymphocytes. The thymus builds the immune system. It's big when you're little and it shrinks right down by the time you're fully grown. I had no idea if Jacinta's thymus was in or out. No-one mentioned it. When I saw the Cardiologist the other week I got him to check and it turns out Jacinta's was partially removed. Thank goodness she still has some to work with! He says it's not common practice to remove it completely thesedays. Nice to know!
So we're working on getting her better so we can start doing the IAHP stuff now that Daddy's done the course.....but that's another post.
Monday, 13 April 2015
Saturday, 14 March 2015
March Forth!
So March is here.
March is the month with one big day in it.
21/3, which in American is 3/21. This is code for Trisomy 21, which is why the ancients who devised the Gregorian Calendar (Pope Gregory XIII) put a 21st of March in the calendar, simply so we could have a day devoted to Trisomy 21.
We'll be away on holiday on the 21st of Trisomy so I thought I'd blog now.
And I have to say, I'm torn. I'm horribly torn as to whether or not these days are a good thing.
The trouble with these days for things is that they highlight things as being something we need to be aware of, because people don't understand them, or because they need to be fixed. There's a brokenness associated with things that have a day devoted to them.
There seem to be several ways that people approach these days.
There is the 'look at my child whom I love, see why I love him', post.
There is the 'look at my child who deserves 'just as much' (insert noun here) as any other', post.
There is the 'look at my child who has feelings and dreams etc just like any other person', post.
There is the 'look at my child who I want to be accepted and included', post
It's rare to see any kind of 'look at my child, who deserves respect and understanding, as you do, who has the potential to do what you do if given the help from the start, who will only be held back by your judgements and suppressions and not by his/her inabilities', post.
What I see so far, (and it's understandable I guess considering that mainstream medicine in general, and tabloid media also, are on the warpath and would like to see people with Trisomy 21 done away with before they see the light of day), is a lot of people still on the back foot.
Maybe I'm lucky. I've never had some random stranger at the shops sneer at me or call me selfish for not aborting my child. I've never been told off by a Dr for declining genetic testing. I've never had people say mean things about Jacinta or seen kids exclude her. (Her sisters' friends actually fawn over her.) Maybe that day will come, but I'm working on that day never coming and if I have a say in it, that day will never come.
Many parents talk about inclusion rather than respect. They talk about acceptance rather than understanding. They say things like, 'just as much', which implies less rather than more.
Back in October 2013 (I think) I referenced a news article from the US where the Homecoming King and Queen from a high school both had Trisomy 21. This was not about acceptance or inclusion. These kids were the most popular in the year and they had the respect of their peers. This was no charity case. They earned it. It's not unusual for people with Trisomy 21 to be very popular amongst their neurotypical peers.
Most late teens/young adults I've seen with Trisomy 21 are heading into the work force or going on to university.
It is understanding which enables them to show they are worthy of being given the job and they generally command respect when people see them doing their job or going about their daily lives.
This is the very reason why I just don't use the term Down syndrome anymore. As far as I'm concerned that term has passed its use by date. The list is useful in diagnosis. If doctors know the list, they might see a few things from the list and suspect a Trisomy 21 case. Once they've tested and found a positive, the list can go out the window - except in terms of being a useful predictor of things for parents to watch for in terms of early intervention. (And as a side note, in re-checking the list I'm pleased to see that many websites have been updated since Jacinta was born, and 'mental retardation' is not only absent but its much more pc equivalent, 'cognitive impairment', is not listed as 'in all cases' any more, but is listed as a mostly and mild to moderate. I'm expecting that to be updated again before Jacinta hits adulthood.)
There are so many ways to intervene now. There are your basic physio, speech and OT. There are neurodevelopment courses like IAHP (the original and, in my opinion, the best). There is targeted nutritional intervention (TNI) with things like Nutrivene D or MSB. There is NAET. There is Osteopathy. There are so, so many other nutritional things. There is fabulously successful heart surgery. There is fabulously successful leukaemia treatment. There are many other things for the many other things that can crop up.
The work that John Langdon Down did with people with "The Mongolian type of idiocy" (which, to be clear, he didn't mean that Mongolians were idiots, just that he had classified the types of 'feeble-minded' people in his care into different ethnic classifications, based on their physical features, not their country of origin) was quite respectful and thorough. He made some interesting observations. I'll post the link below.
His classification was a breakthrough and it would have been great, had it not then been used for the next hundred years as a tool for diagnosing and writing off children from birth (and now before birth) as hopeless cases. In his article, there is no talk of hopelessness. There is talk of the work he has done and what he has observed in helping these people develop as best he can. Had he had NAET, TNI or IAHP at his disposal, or even modern physio, speech or OT, I'm quite sure he would have jumped at these therapies to try them out and see what he could achieve.
Still, since we found that there is a chromosomal difference, which seems to have nothing to do with tuberculosis in the parents but I'm fascinated as to why that might have been his suspicion, we could see that there was something actually going on in there and people have started asking more questions.
Now IAHP didn't start treating kids with T21 because of any genetic discovery, it was simply by chance that Raymundo Veras felt compelled to write a program for an insistent staff member whose child had T21 and who later brought that child in to show Dr Veras the results, prompting him to treat other kids with T21. It actually took him years to convince Glen Doman to come and look at the progress these kids were making, because the medical view was that these kids had deficient brains. That's just what everyone thought. Now they know that 'Veras kids' respond really well to the programs and they find that they're very clever.
NAET wasn't particularly geared towards treating kids with T21 either, it was because one mother with a child with T21 took him along, trying everything she could think of, and they pushed the envelope. They contacted NAET central and had new vials made for things they wanted to try treating. Since then the NAET practitioner has been to the international symposium and done a presentation on NAET's usefulness in treating T21 symptoms.
So far there is no way to treat the T21 itself, but there sure are a lot of ways to treat the symptoms. There are so many different ways it can make your head spin, since you can't possibly do them all and it's very easy to get special needs parent anxiety, that feeling where you might not do the best thing for your child, from overlooking or underestimating something or putting all your eggs in the wrong basket. We only have so many eggs each, it seems. There are only so many hours in a day.
So when we're all out there, so many of us now looking at the myriad of things available and the results possible (not guaranteed, but possible), and expecting some kind of pretty normal existence for our children, why then are we advocating from the back foot?
There's a part of me that is all for the 21st of Trisomy being celebrated as such.
This part of me wants parents out there to show their kids off and be really cocky about it.
This part of me wants parents bragging the hell out of what their kids can do.
I want to see the really fabulous examples of adults out there with T21 plastered all over social media, because these are the guys who didn't have what we have today, and they still have made it this far.
We now have so many things that were nowhere near around 20 years ago. Our kids' potential is completely unknown. There's even a chance that with awesome nutrition, a fantabulous neurodevelopment program which includes reading, maths and intelligence on top of mobility and the rest, the right education and respectful environment in which to thrive, our kids with T21 will be all over our kids without T21. Who's to say?
So I don't do odd socks for T21 day, I think that gives the wrong idea. I know it's meant to look like the chromosome, but to me it signifies an inability to dress properly.
I don't know what my plans are for that day, but if I do anything, it'll be to do with high fives and awesomeness. It'll be celebrating the things people can do and what they may be able to achieve in time. I really think it's time we got on the front foot and got cocky, for our children's sake. If I can change the environment Jacinta will grow up in before she has to navigate it for herself, that's half the battle won right there.
So please, please, can we swap acceptance for understanding? Can we swap inclusion for respect? Can we set the bar higher and go for what we really want, rather than settling for what we humbly think we're entitled to ask for? If my children deserve respect, they all do. If my children deserve understanding, they all do. The ones without T21 just as much as the one with.
Here is the link to John Langdon Down's article.
Be warned: It's called "Observations on an Ethnical Classification of Idiots". It was 1866.
http://www.neonatology.org/classics/down.html
March is the month with one big day in it.
21/3, which in American is 3/21. This is code for Trisomy 21, which is why the ancients who devised the Gregorian Calendar (Pope Gregory XIII) put a 21st of March in the calendar, simply so we could have a day devoted to Trisomy 21.
We'll be away on holiday on the 21st of Trisomy so I thought I'd blog now.
And I have to say, I'm torn. I'm horribly torn as to whether or not these days are a good thing.
The trouble with these days for things is that they highlight things as being something we need to be aware of, because people don't understand them, or because they need to be fixed. There's a brokenness associated with things that have a day devoted to them.
There seem to be several ways that people approach these days.
There is the 'look at my child whom I love, see why I love him', post.
There is the 'look at my child who deserves 'just as much' (insert noun here) as any other', post.
There is the 'look at my child who has feelings and dreams etc just like any other person', post.
There is the 'look at my child who I want to be accepted and included', post
It's rare to see any kind of 'look at my child, who deserves respect and understanding, as you do, who has the potential to do what you do if given the help from the start, who will only be held back by your judgements and suppressions and not by his/her inabilities', post.
What I see so far, (and it's understandable I guess considering that mainstream medicine in general, and tabloid media also, are on the warpath and would like to see people with Trisomy 21 done away with before they see the light of day), is a lot of people still on the back foot.
Maybe I'm lucky. I've never had some random stranger at the shops sneer at me or call me selfish for not aborting my child. I've never been told off by a Dr for declining genetic testing. I've never had people say mean things about Jacinta or seen kids exclude her. (Her sisters' friends actually fawn over her.) Maybe that day will come, but I'm working on that day never coming and if I have a say in it, that day will never come.
Many parents talk about inclusion rather than respect. They talk about acceptance rather than understanding. They say things like, 'just as much', which implies less rather than more.
Back in October 2013 (I think) I referenced a news article from the US where the Homecoming King and Queen from a high school both had Trisomy 21. This was not about acceptance or inclusion. These kids were the most popular in the year and they had the respect of their peers. This was no charity case. They earned it. It's not unusual for people with Trisomy 21 to be very popular amongst their neurotypical peers.
Most late teens/young adults I've seen with Trisomy 21 are heading into the work force or going on to university.
It is understanding which enables them to show they are worthy of being given the job and they generally command respect when people see them doing their job or going about their daily lives.
This is the very reason why I just don't use the term Down syndrome anymore. As far as I'm concerned that term has passed its use by date. The list is useful in diagnosis. If doctors know the list, they might see a few things from the list and suspect a Trisomy 21 case. Once they've tested and found a positive, the list can go out the window - except in terms of being a useful predictor of things for parents to watch for in terms of early intervention. (And as a side note, in re-checking the list I'm pleased to see that many websites have been updated since Jacinta was born, and 'mental retardation' is not only absent but its much more pc equivalent, 'cognitive impairment', is not listed as 'in all cases' any more, but is listed as a mostly and mild to moderate. I'm expecting that to be updated again before Jacinta hits adulthood.)
There are so many ways to intervene now. There are your basic physio, speech and OT. There are neurodevelopment courses like IAHP (the original and, in my opinion, the best). There is targeted nutritional intervention (TNI) with things like Nutrivene D or MSB. There is NAET. There is Osteopathy. There are so, so many other nutritional things. There is fabulously successful heart surgery. There is fabulously successful leukaemia treatment. There are many other things for the many other things that can crop up.
The work that John Langdon Down did with people with "The Mongolian type of idiocy" (which, to be clear, he didn't mean that Mongolians were idiots, just that he had classified the types of 'feeble-minded' people in his care into different ethnic classifications, based on their physical features, not their country of origin) was quite respectful and thorough. He made some interesting observations. I'll post the link below.
His classification was a breakthrough and it would have been great, had it not then been used for the next hundred years as a tool for diagnosing and writing off children from birth (and now before birth) as hopeless cases. In his article, there is no talk of hopelessness. There is talk of the work he has done and what he has observed in helping these people develop as best he can. Had he had NAET, TNI or IAHP at his disposal, or even modern physio, speech or OT, I'm quite sure he would have jumped at these therapies to try them out and see what he could achieve.
Still, since we found that there is a chromosomal difference, which seems to have nothing to do with tuberculosis in the parents but I'm fascinated as to why that might have been his suspicion, we could see that there was something actually going on in there and people have started asking more questions.
Now IAHP didn't start treating kids with T21 because of any genetic discovery, it was simply by chance that Raymundo Veras felt compelled to write a program for an insistent staff member whose child had T21 and who later brought that child in to show Dr Veras the results, prompting him to treat other kids with T21. It actually took him years to convince Glen Doman to come and look at the progress these kids were making, because the medical view was that these kids had deficient brains. That's just what everyone thought. Now they know that 'Veras kids' respond really well to the programs and they find that they're very clever.
NAET wasn't particularly geared towards treating kids with T21 either, it was because one mother with a child with T21 took him along, trying everything she could think of, and they pushed the envelope. They contacted NAET central and had new vials made for things they wanted to try treating. Since then the NAET practitioner has been to the international symposium and done a presentation on NAET's usefulness in treating T21 symptoms.
So far there is no way to treat the T21 itself, but there sure are a lot of ways to treat the symptoms. There are so many different ways it can make your head spin, since you can't possibly do them all and it's very easy to get special needs parent anxiety, that feeling where you might not do the best thing for your child, from overlooking or underestimating something or putting all your eggs in the wrong basket. We only have so many eggs each, it seems. There are only so many hours in a day.
So when we're all out there, so many of us now looking at the myriad of things available and the results possible (not guaranteed, but possible), and expecting some kind of pretty normal existence for our children, why then are we advocating from the back foot?
There's a part of me that is all for the 21st of Trisomy being celebrated as such.
This part of me wants parents out there to show their kids off and be really cocky about it.
This part of me wants parents bragging the hell out of what their kids can do.
I want to see the really fabulous examples of adults out there with T21 plastered all over social media, because these are the guys who didn't have what we have today, and they still have made it this far.
We now have so many things that were nowhere near around 20 years ago. Our kids' potential is completely unknown. There's even a chance that with awesome nutrition, a fantabulous neurodevelopment program which includes reading, maths and intelligence on top of mobility and the rest, the right education and respectful environment in which to thrive, our kids with T21 will be all over our kids without T21. Who's to say?
So I don't do odd socks for T21 day, I think that gives the wrong idea. I know it's meant to look like the chromosome, but to me it signifies an inability to dress properly.
I don't know what my plans are for that day, but if I do anything, it'll be to do with high fives and awesomeness. It'll be celebrating the things people can do and what they may be able to achieve in time. I really think it's time we got on the front foot and got cocky, for our children's sake. If I can change the environment Jacinta will grow up in before she has to navigate it for herself, that's half the battle won right there.
So please, please, can we swap acceptance for understanding? Can we swap inclusion for respect? Can we set the bar higher and go for what we really want, rather than settling for what we humbly think we're entitled to ask for? If my children deserve respect, they all do. If my children deserve understanding, they all do. The ones without T21 just as much as the one with.
 |
| These older girls love popcorn almost as much as Jacinta does... |
Here is the link to John Langdon Down's article.
Be warned: It's called "Observations on an Ethnical Classification of Idiots". It was 1866.
http://www.neonatology.org/classics/down.html
Monday, 2 March 2015
Inspirational
Here is a blog post for all those parents out there who just aren't getting it done today.
I'm known for my positive outlook (some might say I have blinkers on, or I refuse to admit things are as bad as they are, but I just choose not to look at the car crash if I can't be of assistance and to focus on the bright side).
Still, there are times when a positive outlook takes a beating and these are most likely to be the days when sleep is lacking, washing is mounting, you're well and truly outnumbered by inactive members of the household and chocolate is plentiful, and on sale.
So I'm sitting here, when I should be in bed, having just finished my 'grown up work' (bookkeeping) for the evening. Can't possibly go straight to bed because that is simply too depressing, to have a whole day with no downtime, and I refuse to entertain going to bed when my thoughts are still on work, of any kind.
So right now my inspiration levels are at an all-time low, and I thought it was worth mentioning that although I am still very much the person who has written all the previous blog entries and will be up and at 'em tomorrow, tonight I am off post. I'm mentally off the air.
I have recently come across the blog of a lady who lives in the same city as me. She has one more daughter than I do and they're a bit older. She has incurable cancer and she's an absolute hoot. She's inspirational. Today I do not feel in the least bit inspirational. I'm still positive, no change there, but I'm tired. Very tired. I had a follow-up doctor's appointment today re my toe which seems not to be broken from looking at the xray. It was to get the results of my xray. You can see why I forgot all about it and didn't turn up! Must ring and apologise tomorrow. Must remember to do so!
Anyway, I just thought it might help to hear, just this once, I'm not feeling particularly inspired today and I don't have any particularly inspirational words to say. Time for bed.
I'm known for my positive outlook (some might say I have blinkers on, or I refuse to admit things are as bad as they are, but I just choose not to look at the car crash if I can't be of assistance and to focus on the bright side).
Still, there are times when a positive outlook takes a beating and these are most likely to be the days when sleep is lacking, washing is mounting, you're well and truly outnumbered by inactive members of the household and chocolate is plentiful, and on sale.
So I'm sitting here, when I should be in bed, having just finished my 'grown up work' (bookkeeping) for the evening. Can't possibly go straight to bed because that is simply too depressing, to have a whole day with no downtime, and I refuse to entertain going to bed when my thoughts are still on work, of any kind.
So right now my inspiration levels are at an all-time low, and I thought it was worth mentioning that although I am still very much the person who has written all the previous blog entries and will be up and at 'em tomorrow, tonight I am off post. I'm mentally off the air.
I have recently come across the blog of a lady who lives in the same city as me. She has one more daughter than I do and they're a bit older. She has incurable cancer and she's an absolute hoot. She's inspirational. Today I do not feel in the least bit inspirational. I'm still positive, no change there, but I'm tired. Very tired. I had a follow-up doctor's appointment today re my toe which seems not to be broken from looking at the xray. It was to get the results of my xray. You can see why I forgot all about it and didn't turn up! Must ring and apologise tomorrow. Must remember to do so!
Anyway, I just thought it might help to hear, just this once, I'm not feeling particularly inspired today and I don't have any particularly inspirational words to say. Time for bed.
Tuesday, 20 January 2015
Well, hello!
I just blinked and three months went by!
That's the thing with having school-age children. You hit the end of October and things ramp up and, in our house, they don't settle down until about 20th January.....
And what has been happening?
We've seen the Oncology guys a few times, and they're happy. I'm in a place now where I don't see petechiae in every texta (felt tip pen) mark and I know the red in the nappy is a piece of undigested tomato - after a very thorough examination.... Getting there, slowly.
We've all been fairly healthy since the end of October.
I just found a post from December which I never finished, so I've published it with a quick glance-through. I hope it's not too sensational!
The eternal puzzle of what to get a 2 year-old who really wants a Barbie (sigh) for Christmas that will encourage her to move around in a cross-pattern on hands and knees is ever-present. She did get a Barbie. She also got a drawing mat, one of those water pen ones that are everywhere at the moment. A Peppa Pig one. Of course.
Then she had a birthday!! Books and dresses, I said. Books and dresses. She got quite a few books and dresses. She had a lovely time. And a Peppa cake. Of course. Funnily enough she hasn't watched Peppa for ages, not since hospital. I've pretty much banned DVDs and videos, on top of the nonexistence of TV. Caused too much trouble with the older siblings. Pointless for development anyway, though oh so handy to get things done...
I meant to post on her birthday but there was just too much to get on with and I was too behind on sleep! She's not the only child, nor the only one with a January birthday and this year is party year for my eldest. This means lots and lots of organising for lots and lots of children. (We don't do it every year so I place few limits on how exactly the party will take place. If it's possible, we do it.)
And so how is she looking? What is she doing? We had a few hot days at the start of the year so we were at the swimming pools and I noticed that it was very easy for her to grasp my fingers, Doman-style, while she was in the pool. This was so much fun for her that I took up doing it again at home. She'd become so tired and pretty weak that I'd given up last year some time. Anyway, she loves it. Every nappy change, unless she's too tired, I stand her up on the change mat and she says "arp", which is Jacinta for "grasp" and we give it a go, three times.
This is how the Doman program is meant to go. In the ideal world, the bulk of it is meant to slot into your life so you can do it as you go about your day. So easy. One purpose of this grasp exercise is to stretch out the thorax and get more air going in, which can impact on speech. Since then, her speech has been coming along. Now I'm not completely sure it's just that, since my middlest also had a marked change in speech at that age. She spontaneously began speaking in sentences on her 2nd birthday. Still, it's very interesting that old words are suddenly back. Dipdipdipdip, for a chip. Piddabada, for peanut butter. Butterbuy, for butterfly. Hey, for hey. She's having a go at new words too, like 'grasp'. There are others that slip my mind for now.
So how's she looking?
That there in the background is the crawling track. I moved it since it was in the way of everything, but before I did I tried something out. She had just started climbing stairs since she realised that if she could climb stairs she would have almost unlimited access to slides and other playground delights.
I set up two stools, one under the crawling track to give it an incline, and the other just behind that stool, to create a smaller step. She cottoned on pretty quickly and when she crawled up, I very gently encouraged her knees to use the mat instead of doing the usual (cringeworthy for brain synapses) bottom-shuffle. I found that when I did this, she settled into a lovely cross-pattern crawl. Now I'd love to tell you that from that point on she enjoyed crawling so much that she gave up bottom-shuffling for good, but she didn't.
Still, after that we've seen her crawl several times when left to her own devices. Trouble is we get so excited that she stops, sits up, enjoys the applause, and forgets to do it anymore!
When my husband has finished his studies (4 weeks to go til exams!) we're going to get moving on this IAHP stuff, at least to get crawling happening.
Still, she's cruising, nearly standing on her own, wanting to walk but lacking confidence. She does still point her feet outwards a fair bit, and I suspect crawling will help with that. She can climb up and down stairs safely now, which gives me some freedom and also gives her some freedom, which negates the freedom I get!
She's enjoying books for older children. She's tickling us and doing 'round and round the garden' with us. She's mastering the use of cutlery and is throwing her plates on the floor much less now. In fact the floor has not been covered with uneaten portions lately, which is lovely. I also found coconut yoghurt at the supermarket yesterday and she likes it!! (As opposed to any kind of non-dairy milk we've tried so far - almond, rice, macadamia...)
Another thing I found interesting at the pools was that she's not too keen on me putting her on her back in the water, but if I put her up at the side, holding on and with her feet up near her hands, like the start of a backstroke, she will actually push off like a backstroke swimmer and happily go back a distance if she's resting on me. I've never seen one of my children do that before. It's like she's a ready-made swimmer.
Anyway, there's a lot to go on with and lots to work on.
And it's a time for reminiscing, since one year ago today I was still reeling from the phone call that had come in the evening, telling me that the bloods we'd had earlier that day showed signs of leukaemia. The next day we went in and were in for a further 6 weeks.
What a strange turn of events. Nothing was ever the same, though it's always like that, isn't it?
As a child, then a teenager, I used to wish for things to go back to the way they were in the past. I was always striving to recreate perfect memories.
So many times since then, life has taken a sharp turn in another direction. How different things would be if people hadn't died, if people hadn't gotten sick or developed problems. But it's part of growing and developing into the person you will become in order to grow and develop some more. Particularly so for my older children, who really have been the collateral damage in this leukaemia business.
We're finally getting strict enough and consistent enough to regain some semblance of control over the family and the house. Things got so chaotic, it's been hard for the girls to know where the boundaries are, especially when they are being set by several different people and then being relaxed because everyone feels sorry for them and nobody wants to be the bad guy, or has the time or energy to deal with a meltdown. Still, I'm hopeful that by the end of this year we'll have a bit more clockwork going on in terms of knowing what the rules are and sticking to them. Fingers X!
Last week we farewelled a little boy we met on the ward during our second admission. His is a tragic story. He was the poster boy, the success of the transplant unit. A gorgeous 2 year-old who was tearing around the unit when he had the energy and riding his pole around if he didn't. They found a 100% bone marrow match for him. He had it all done and recovered so quickly. Within 60 days he was back again, with everything back, much more aggressive than before. Watching The Fault In Our Stars recently, it really tells the harsh reality for so many families. Relapse is lurking over your shoulder, in the back of your mind. It's there as a possibility and can happen when you least expect it.
Farewell to Ryder, rest well little buddy.
And the rest of us carry on...
That's the thing with having school-age children. You hit the end of October and things ramp up and, in our house, they don't settle down until about 20th January.....
And what has been happening?
We've seen the Oncology guys a few times, and they're happy. I'm in a place now where I don't see petechiae in every texta (felt tip pen) mark and I know the red in the nappy is a piece of undigested tomato - after a very thorough examination.... Getting there, slowly.
We've all been fairly healthy since the end of October.
I just found a post from December which I never finished, so I've published it with a quick glance-through. I hope it's not too sensational!
The eternal puzzle of what to get a 2 year-old who really wants a Barbie (sigh) for Christmas that will encourage her to move around in a cross-pattern on hands and knees is ever-present. She did get a Barbie. She also got a drawing mat, one of those water pen ones that are everywhere at the moment. A Peppa Pig one. Of course.
Then she had a birthday!! Books and dresses, I said. Books and dresses. She got quite a few books and dresses. She had a lovely time. And a Peppa cake. Of course. Funnily enough she hasn't watched Peppa for ages, not since hospital. I've pretty much banned DVDs and videos, on top of the nonexistence of TV. Caused too much trouble with the older siblings. Pointless for development anyway, though oh so handy to get things done...
I meant to post on her birthday but there was just too much to get on with and I was too behind on sleep! She's not the only child, nor the only one with a January birthday and this year is party year for my eldest. This means lots and lots of organising for lots and lots of children. (We don't do it every year so I place few limits on how exactly the party will take place. If it's possible, we do it.)
And so how is she looking? What is she doing? We had a few hot days at the start of the year so we were at the swimming pools and I noticed that it was very easy for her to grasp my fingers, Doman-style, while she was in the pool. This was so much fun for her that I took up doing it again at home. She'd become so tired and pretty weak that I'd given up last year some time. Anyway, she loves it. Every nappy change, unless she's too tired, I stand her up on the change mat and she says "arp", which is Jacinta for "grasp" and we give it a go, three times.
This is how the Doman program is meant to go. In the ideal world, the bulk of it is meant to slot into your life so you can do it as you go about your day. So easy. One purpose of this grasp exercise is to stretch out the thorax and get more air going in, which can impact on speech. Since then, her speech has been coming along. Now I'm not completely sure it's just that, since my middlest also had a marked change in speech at that age. She spontaneously began speaking in sentences on her 2nd birthday. Still, it's very interesting that old words are suddenly back. Dipdipdipdip, for a chip. Piddabada, for peanut butter. Butterbuy, for butterfly. Hey, for hey. She's having a go at new words too, like 'grasp'. There are others that slip my mind for now.
So how's she looking?
 |
| Like this! |
I set up two stools, one under the crawling track to give it an incline, and the other just behind that stool, to create a smaller step. She cottoned on pretty quickly and when she crawled up, I very gently encouraged her knees to use the mat instead of doing the usual (cringeworthy for brain synapses) bottom-shuffle. I found that when I did this, she settled into a lovely cross-pattern crawl. Now I'd love to tell you that from that point on she enjoyed crawling so much that she gave up bottom-shuffling for good, but she didn't.
Still, after that we've seen her crawl several times when left to her own devices. Trouble is we get so excited that she stops, sits up, enjoys the applause, and forgets to do it anymore!
When my husband has finished his studies (4 weeks to go til exams!) we're going to get moving on this IAHP stuff, at least to get crawling happening.
Still, she's cruising, nearly standing on her own, wanting to walk but lacking confidence. She does still point her feet outwards a fair bit, and I suspect crawling will help with that. She can climb up and down stairs safely now, which gives me some freedom and also gives her some freedom, which negates the freedom I get!
She's enjoying books for older children. She's tickling us and doing 'round and round the garden' with us. She's mastering the use of cutlery and is throwing her plates on the floor much less now. In fact the floor has not been covered with uneaten portions lately, which is lovely. I also found coconut yoghurt at the supermarket yesterday and she likes it!! (As opposed to any kind of non-dairy milk we've tried so far - almond, rice, macadamia...)
Another thing I found interesting at the pools was that she's not too keen on me putting her on her back in the water, but if I put her up at the side, holding on and with her feet up near her hands, like the start of a backstroke, she will actually push off like a backstroke swimmer and happily go back a distance if she's resting on me. I've never seen one of my children do that before. It's like she's a ready-made swimmer.
Anyway, there's a lot to go on with and lots to work on.
And it's a time for reminiscing, since one year ago today I was still reeling from the phone call that had come in the evening, telling me that the bloods we'd had earlier that day showed signs of leukaemia. The next day we went in and were in for a further 6 weeks.
What a strange turn of events. Nothing was ever the same, though it's always like that, isn't it?
As a child, then a teenager, I used to wish for things to go back to the way they were in the past. I was always striving to recreate perfect memories.
So many times since then, life has taken a sharp turn in another direction. How different things would be if people hadn't died, if people hadn't gotten sick or developed problems. But it's part of growing and developing into the person you will become in order to grow and develop some more. Particularly so for my older children, who really have been the collateral damage in this leukaemia business.
We're finally getting strict enough and consistent enough to regain some semblance of control over the family and the house. Things got so chaotic, it's been hard for the girls to know where the boundaries are, especially when they are being set by several different people and then being relaxed because everyone feels sorry for them and nobody wants to be the bad guy, or has the time or energy to deal with a meltdown. Still, I'm hopeful that by the end of this year we'll have a bit more clockwork going on in terms of knowing what the rules are and sticking to them. Fingers X!
Last week we farewelled a little boy we met on the ward during our second admission. His is a tragic story. He was the poster boy, the success of the transplant unit. A gorgeous 2 year-old who was tearing around the unit when he had the energy and riding his pole around if he didn't. They found a 100% bone marrow match for him. He had it all done and recovered so quickly. Within 60 days he was back again, with everything back, much more aggressive than before. Watching The Fault In Our Stars recently, it really tells the harsh reality for so many families. Relapse is lurking over your shoulder, in the back of your mind. It's there as a possibility and can happen when you least expect it.
Farewell to Ryder, rest well little buddy.
And the rest of us carry on...
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| Trying out her new dissolving arms..... |
Oops! Skipped a month!
NB: I actually wrote this on 2nd December 2014. Forgot to publish it!
Where did the time go?
We had Halloween, which is kind of lacklustre in Melbourne, but is gaining momentum as the chocolate companies realise there is still a virtually untapped market here and flog it to death.
We had Melbourne Cup Day, which I celebrated by running out on my family completely in the afternoon and missing the whole thing.
We had a trip to Echuca, via Benalla, which isn't exactly on the way.
We had November, which is a bit of a blur, with Christmas things already going on and an early Thanksgiving celebration a few weeks ago. We got to try sweet potato with marshmallows!
Well, when I left off Jacinta still had the last remnants of the gut issues from the gastro and I was exhausted. I'm still exhausted since everyone's given up sleeping, it seems, but the gastro's all gone now. It took a couple of weeks for her (TMI) poo to regain its colour and stop exploding out everywhere. I did also rein in her diet to ensure she was getting enough iron and all the other things she needed. (It got a bit off course there when we were in hospital all the time.)
Then, shortly after she was clear of the gastro she came down with a cold. I had it for a few days. She struggled with it on the first couple of days and I almost took her in to Emergency on day 2, since she was working so hard with her breathing. If she hadn't fallen asleep for the night and settled down I would have taken her. I got her back to see Maria and we've been working on the illness. I think it settled down and she caught another one straight away though, because she's been unwell for several weeks now. It has stayed off her chest though, thankfully.
Today was an appointment day and she was all fine on the cold and flu things so we got to address her heart, yay! (plus a bit of muscle, brain-body function and trisomy 21)
This is following on from yesterday's appointment with the Cardiologist. She flew through all the scans (Echo and ECG are standard with each visit) without a fuss and the nurse, technicians and Dr were very pleased with her. I think when you've been having these tests since birth and they don't hurt at all, you've got absolutely no reason to make a fuss!
The Cardiologist says her heart is about the same size as it was this time last year, which is good. The danger is that if the valve stays leaky and goes untreated it might cause the heart to become enlarged - and I don't think it helps you to race better, like Phar Lap (google Melbourne Cup, Phar Lap) if you're a human with a large heart. I think it's just more likely to explode, like the guy from The Meaning of Life ( "it's just a teeny morsel, wafer thin..." ewwww)
Anyway, I think that the reason they want to fix it in particular is that over this year she's had a few moments of struggling when she's had transfusions or IV fluids or respiratory issues with bronchiolitis etc. Still, we're working on the heart to see if we can get that AV valve working properly and avoid the surgery altogether. ("we're working on the heart to see if we can get that..." Flying High? Anyone?)
So today was interesting. I didn't see any heart or muscle-related improvements like I've done in previous times (like the time she was breastfeeding right before a treatment and then came out after and finished the feed and it was like someone had cleaned out the vacuum cleaner pipe - the suction had improved out of sight!), but I noticed that she was super chatty all day after the treatment and she was blowing raspberries and I realised I hadn't seen her do that for ages - possibly since before she had the line out.
I guess we'll see how we go on this one. It's great to be doing these things, and I can't wait to address things to do with crawling or speech. I know, there's time, but I want to do them all now!
Where did the time go?
We had Melbourne Cup Day, which I celebrated by running out on my family completely in the afternoon and missing the whole thing.
We had a trip to Echuca, via Benalla, which isn't exactly on the way.
We had November, which is a bit of a blur, with Christmas things already going on and an early Thanksgiving celebration a few weeks ago. We got to try sweet potato with marshmallows!
Well, when I left off Jacinta still had the last remnants of the gut issues from the gastro and I was exhausted. I'm still exhausted since everyone's given up sleeping, it seems, but the gastro's all gone now. It took a couple of weeks for her (TMI) poo to regain its colour and stop exploding out everywhere. I did also rein in her diet to ensure she was getting enough iron and all the other things she needed. (It got a bit off course there when we were in hospital all the time.)
Then, shortly after she was clear of the gastro she came down with a cold. I had it for a few days. She struggled with it on the first couple of days and I almost took her in to Emergency on day 2, since she was working so hard with her breathing. If she hadn't fallen asleep for the night and settled down I would have taken her. I got her back to see Maria and we've been working on the illness. I think it settled down and she caught another one straight away though, because she's been unwell for several weeks now. It has stayed off her chest though, thankfully.
Today was an appointment day and she was all fine on the cold and flu things so we got to address her heart, yay! (plus a bit of muscle, brain-body function and trisomy 21)
This is following on from yesterday's appointment with the Cardiologist. She flew through all the scans (Echo and ECG are standard with each visit) without a fuss and the nurse, technicians and Dr were very pleased with her. I think when you've been having these tests since birth and they don't hurt at all, you've got absolutely no reason to make a fuss!
The Cardiologist says her heart is about the same size as it was this time last year, which is good. The danger is that if the valve stays leaky and goes untreated it might cause the heart to become enlarged - and I don't think it helps you to race better, like Phar Lap (google Melbourne Cup, Phar Lap) if you're a human with a large heart. I think it's just more likely to explode, like the guy from The Meaning of Life ( "it's just a teeny morsel, wafer thin..." ewwww)
Anyway, I think that the reason they want to fix it in particular is that over this year she's had a few moments of struggling when she's had transfusions or IV fluids or respiratory issues with bronchiolitis etc. Still, we're working on the heart to see if we can get that AV valve working properly and avoid the surgery altogether. ("we're working on the heart to see if we can get that..." Flying High? Anyone?)
So today was interesting. I didn't see any heart or muscle-related improvements like I've done in previous times (like the time she was breastfeeding right before a treatment and then came out after and finished the feed and it was like someone had cleaned out the vacuum cleaner pipe - the suction had improved out of sight!), but I noticed that she was super chatty all day after the treatment and she was blowing raspberries and I realised I hadn't seen her do that for ages - possibly since before she had the line out.
I guess we'll see how we go on this one. It's great to be doing these things, and I can't wait to address things to do with crawling or speech. I know, there's time, but I want to do them all now!
Tuesday, 28 October 2014
Now what?
So we waited out the wait.
We had a bit of another snotty virus.
We had a death in the family and my husband had uni exams....
We had gastro.
I got around to ringing the nurse co-ordinator because I recalled that our Dr had said we could have the Hickman out the day of our appointment if the results were ok. We should just come fasting and be added to the list. The trouble here was that our appointment was at midday. I had no intention of arriving at midday with a grumpy, fasting Jacinta.
So I spoke to her and she said that it wouldn't work to just be added to the list, that the Thursday list was pretty full, but that if we didn't mind we could do it on Friday's list after we see our Dr on the Thurs. She said that the results looked fine to her, but she couldn't confirm fully that they were until the Dr did. That was enough for me to know that things were going ahead. (As it is, even if the doctor confirms something it can still go awry, we have found.)
So we went with that plan. It was a good plan. We confirmed it when we were in on Thurs. All was ok. The suggestion to remove the Hickman in Day Oncology with a bit of the hypnotic kept coming up when it was mentioned to a new person. I reiterated that it wasn't an option for us. We kept going back to the theatre list option.
Then that evening I got a call from our co-ordinator. This phone call was meant to be the one telling us to come in the next morning, fasting, to Reception J...but it wasn't.
It was telling us that there were two new diagnoses that needed bone marrow aspirates and they were the priority on the list. (Which, of course, they were.) The Friday list was looking full but the Monday list would probably be ok. The other option was they could do it in Day Oncology with some sucrose, as they sometimes do with little babies.
At this I had to ask, how painful was it, exactly?
The nurse co-ordinator said it wasn't so much painful as uncomfortable, and that it was more about keeping them still so they could hold the neck to stop the internal bleeding, than pain relief.
She said I could have a think which I wanted to do and leave her a message overnight.
I ummed and aaahed. I really didn't want to get this wrong. I wanted to do it in theatre, but if it could be bumped to Monday, that could be bumped to Tuesday, etc, etc, and if we got a temp again we could be in hospital again for another week.
I was unsure about doing it in Day Oncology wide awake, only because I wasn't sure of how uncomfortable it was. I decided to google youtube videos of people having them removed. I found two without much trouble. What a resource the internet is!
Neither of the patients seemed too worried by the removal. No-one cried out or seemed in pain at all.
This formed my decision to do it in Day Oncology. It seems I should not have let Jacinta watch the videos. She watched the second one and really flinched and cried when she saw them rip out the line. She didn't settle right that night and woke every hour or so.
We came in on Friday for the removal. She was fine, right up until they were about to pull it, when she let me have what for in no uncertain terms. She didn't want to do it, but we were right there and it was an exposed line into her jugular vein. So we pulled it. She was fine again, it seemed, a few minutes later. She wasn't really speaking to me for the rest of the day though.
Since then she's been flat, lethargic, spending a lot of her day either on her tummy on the floor or breastfeeding. It's a bit like she's gone straight back to just before her diagnosis. The gastro seems to be lingering.
We went to see Maria today for the first time in many months. We addressed the gut mainly to try and get her over this thing. It seemed to be both viral and bacterial so perhaps that's the problem with it taking so long.
Earlier last week my husband was asking about the bone marrow result. I had heard from the nurse co-ordinator that it all looked ok to her. This as much as confirmed for me that it was not growing back. My husband asked if this was a confirmed 'all clear'. I couldn't really say 'yes' because there never really is an 'all clear' for this. You just hope it never comes back, and you worry less and less with each good result over time. That never means it's never coming back. It never means you can look at a bruise and feel completely certain it's nothing but a bump you didn't see happen. It never means you can see a rash or petechiae without a little voice inside your head reminding you that's what she had when she was diagnosed.
So I said it wouldn't be confirmed until the specialist said it was a good result. On Thursday the specialist said it was all good and we could get the line out. There was no big announcement, no pause for effect. No jumping up and hugging everyone, tears of relief etc. It was just "that was all fine, so we can take the line out if you want". And we'll see you again in a month.
He was all keen to get that confirmation so he could shout it to the world that it was all over.
Except it wasn't really all over. There was still the line to come out, or we could still be landed in hospital for a week at no notice. There was still the current sickness to get over. There will still be appointments in Day Oncology for months yet and years after that. So when the blood result was announced on his facebook page, I was right in the middle of deciding what sort of horrible day to inflict on Jacinta to get her line out, and it just didn't feel like it was the time to celebrate, to me. That's the fascinating thing about different perspectives.
The treatment has finished. The line is out. These are my milestones. These are tangible differences to our lifestyle and to Jacinta's quality of life. The blood result, while it determines the future course, actually has less to do with life as we know it in that sense.
Unless Jacinta is the picture of health then I can't relax, regardless of what the blood tests say.
As her mother I have to observe every tiny thing. I don't have to factor them all in, but I observe them all and they all go in the mental file. Any time I see a few that belong in the 'something's wrong' pile, I'll be wondering. (And there's a facebook group for that, thank goodness!)
When does it all stop? A friend of mine says to give it 6 months....
So now we're not in hospital all the time, the job is to get Jacinta back to a state of good health, get myself back to a state of good health (I saw Maria too for my own exhaustion, the byproduct of 9 months' intense familial wrongness with no break) and start working on the things we'll need to catch up on if she's to start kinder in 2017. No rest for the wicked!
We had a bit of another snotty virus.
We had a death in the family and my husband had uni exams....
We had gastro.
I got around to ringing the nurse co-ordinator because I recalled that our Dr had said we could have the Hickman out the day of our appointment if the results were ok. We should just come fasting and be added to the list. The trouble here was that our appointment was at midday. I had no intention of arriving at midday with a grumpy, fasting Jacinta.
So I spoke to her and she said that it wouldn't work to just be added to the list, that the Thursday list was pretty full, but that if we didn't mind we could do it on Friday's list after we see our Dr on the Thurs. She said that the results looked fine to her, but she couldn't confirm fully that they were until the Dr did. That was enough for me to know that things were going ahead. (As it is, even if the doctor confirms something it can still go awry, we have found.)
So we went with that plan. It was a good plan. We confirmed it when we were in on Thurs. All was ok. The suggestion to remove the Hickman in Day Oncology with a bit of the hypnotic kept coming up when it was mentioned to a new person. I reiterated that it wasn't an option for us. We kept going back to the theatre list option.
Then that evening I got a call from our co-ordinator. This phone call was meant to be the one telling us to come in the next morning, fasting, to Reception J...but it wasn't.
It was telling us that there were two new diagnoses that needed bone marrow aspirates and they were the priority on the list. (Which, of course, they were.) The Friday list was looking full but the Monday list would probably be ok. The other option was they could do it in Day Oncology with some sucrose, as they sometimes do with little babies.
At this I had to ask, how painful was it, exactly?
The nurse co-ordinator said it wasn't so much painful as uncomfortable, and that it was more about keeping them still so they could hold the neck to stop the internal bleeding, than pain relief.
She said I could have a think which I wanted to do and leave her a message overnight.
I ummed and aaahed. I really didn't want to get this wrong. I wanted to do it in theatre, but if it could be bumped to Monday, that could be bumped to Tuesday, etc, etc, and if we got a temp again we could be in hospital again for another week.
I was unsure about doing it in Day Oncology wide awake, only because I wasn't sure of how uncomfortable it was. I decided to google youtube videos of people having them removed. I found two without much trouble. What a resource the internet is!
Neither of the patients seemed too worried by the removal. No-one cried out or seemed in pain at all.
This formed my decision to do it in Day Oncology. It seems I should not have let Jacinta watch the videos. She watched the second one and really flinched and cried when she saw them rip out the line. She didn't settle right that night and woke every hour or so.
We came in on Friday for the removal. She was fine, right up until they were about to pull it, when she let me have what for in no uncertain terms. She didn't want to do it, but we were right there and it was an exposed line into her jugular vein. So we pulled it. She was fine again, it seemed, a few minutes later. She wasn't really speaking to me for the rest of the day though.
Since then she's been flat, lethargic, spending a lot of her day either on her tummy on the floor or breastfeeding. It's a bit like she's gone straight back to just before her diagnosis. The gastro seems to be lingering.
We went to see Maria today for the first time in many months. We addressed the gut mainly to try and get her over this thing. It seemed to be both viral and bacterial so perhaps that's the problem with it taking so long.
Earlier last week my husband was asking about the bone marrow result. I had heard from the nurse co-ordinator that it all looked ok to her. This as much as confirmed for me that it was not growing back. My husband asked if this was a confirmed 'all clear'. I couldn't really say 'yes' because there never really is an 'all clear' for this. You just hope it never comes back, and you worry less and less with each good result over time. That never means it's never coming back. It never means you can look at a bruise and feel completely certain it's nothing but a bump you didn't see happen. It never means you can see a rash or petechiae without a little voice inside your head reminding you that's what she had when she was diagnosed.
So I said it wouldn't be confirmed until the specialist said it was a good result. On Thursday the specialist said it was all good and we could get the line out. There was no big announcement, no pause for effect. No jumping up and hugging everyone, tears of relief etc. It was just "that was all fine, so we can take the line out if you want". And we'll see you again in a month.
He was all keen to get that confirmation so he could shout it to the world that it was all over.
Except it wasn't really all over. There was still the line to come out, or we could still be landed in hospital for a week at no notice. There was still the current sickness to get over. There will still be appointments in Day Oncology for months yet and years after that. So when the blood result was announced on his facebook page, I was right in the middle of deciding what sort of horrible day to inflict on Jacinta to get her line out, and it just didn't feel like it was the time to celebrate, to me. That's the fascinating thing about different perspectives.
The treatment has finished. The line is out. These are my milestones. These are tangible differences to our lifestyle and to Jacinta's quality of life. The blood result, while it determines the future course, actually has less to do with life as we know it in that sense.
Unless Jacinta is the picture of health then I can't relax, regardless of what the blood tests say.
As her mother I have to observe every tiny thing. I don't have to factor them all in, but I observe them all and they all go in the mental file. Any time I see a few that belong in the 'something's wrong' pile, I'll be wondering. (And there's a facebook group for that, thank goodness!)
When does it all stop? A friend of mine says to give it 6 months....
So now we're not in hospital all the time, the job is to get Jacinta back to a state of good health, get myself back to a state of good health (I saw Maria too for my own exhaustion, the byproduct of 9 months' intense familial wrongness with no break) and start working on the things we'll need to catch up on if she's to start kinder in 2017. No rest for the wicked!
Friday, 17 October 2014
Down syndrome: A father's perspective.
Tonight I received this surprise email from my husband
and I thought I'd share his viewpoint with you.
It is October, after all!
It seems only fitting that the first guest post on this blog should be from Jacinta's Dad....
I am a father under siege – but in a good way. I was born the eldest of three brothers and grew up in a home of transformers, martial arts, cricket and army men. For the past six years Barbie dolls, ballet dresses and My Little Ponies have surrounded me.
I have three beautiful daughters and the best wife a husband could ask for. So I guess having a son who would want to learn to kick a football, and follow in my footsteps is something I will just have to forget. But, you know what, I wouldn’t have it any other way. There is such a special bond between a father and his daughters. The affection and love we have for each other is certainly something I didn’t expect before my children came along.
My three most vivid memories, and most emotional, are the days my daughters were born and joined our family. I’m usually not a teary person, but with the birth of each daughter I have blubbered like a child. The love I immediately felt for each daughter was literally timeless. It was like she had always been a part of the family and I couldn’t conceive of a time when she wasn’t a part of my life. Very difficult to explain to someone who hasn’t experienced it, as it isn’t like anything else.
Holding my first two daughters, I knew each time that I would love them forever, regardless of what situations they got themselves into or the scrapes and falls they would experience in life. I have such high hopes for my daughters. They are amazing people, each of them and I know they have the potential to achieve any goals they have.
Almost two years ago Peggy gave birth to our third daughter, Jacinta. I was so excited prior to the birth, I couldn’t wait to welcome another person to our lives and to experience that love for another being.
A few weeks before the birth there were a few indications that something was wrong. We had declined genetic testing, mainly because it would not have had any impact on our decisions, we were always going to have Jacinta regardless of the situation. So I decided I wouldn’t worry about things that were out of my control and just focused on the excitement of another daughter.
The day she was born was probably one of the toughest days of my life. The birth was very quick, we made it to the hospital just in time. In previous deliveries I didn’t watch the actual birth as I found that all made me a little queasy. However, this time I was fine and I watched as Jacinta was born.
I saw it immediately … the joy and excitement were gone and my stomach felt like it had just fallen through the floor. It was clear to me that she had Down syndrome. The doctor, who obviously saw it as well, was very non-committal and uncomfortable talking about it, saying we had to wait for tests. I didn’t have to wait for tests, I knew! All of the hopes and dreams that I had for her were dashed in that instant and at that moment a vision of her life flashed before me and it was not promising.
My only experience with down syndrome had been my auntie. She has what I would class as the ‘classic’ features and characteristics of down syndrome. Not a future I wished for my daughter.
However, I quickly got my shit together, two of the most important women in my life (Peggy and Jacinta) needed me to be strong and I immediately went into action. We were advised by the senior doctor that she had a myriad of medical conditions, including kidney, liver, heart and blood problems – and oh yes, most likely Down syndrome. I rang our friend Kristen Morrison, whose son Gryffin was also born with Down syndrome. She had spent five years searching the world for a solution to her son’s situation and she had found a number of solutions to overcome a number of the conditions associated with Down syndrome. She told me what I could do immediately and so I started to get it done.
The second hardest moment was telling my parents. It had been two days and I hadn’t really told them what was going on, just that she was in the special care nursery getting help with her breathing. It was that night at my Mother’s birthday that I told them. It was a tough reaction. Mum burst into tears and I think Dad was in shock. Like me, their main experience with Down syndrome was my Mum’s sister. I left that evening with the mood dark.
Two days later at my request, they met with Gryffin’s Grandmother, Glenys, who is a friend of both our families. She was able to share with my parents the love and hope she has for Gryffin and gave a truly positive spin on the situation. When I next saw my parents it was a different story. They were totally on board and ready to do anything they could to ensure Jacinta had every opportunity to achieve her goals in life.
It has been almost two years and a lot has happened in between, including major heart surgery and eight months of chemotherapy for leukaemia. It has been tough and Jacinta and Peggy have spent at least nine of the past 18 months in hospital. There have been days where I have sent our eldest daughter to school in mismatching socks and totally disheveled hair.
So, almost two years on, what do I think? Would I have done things differently? Should I have insisted on genetic testing? Is my life better or worse?
There are times where it has been tough. I have tried to hold myself strong for the sake of my wife, daughters, friends and extended family. There are times where I wish I could just let it all go and let the emotion wash through me. But there is no time for that and as a father people are counting on you to be a rock and support the family. Of course Peggy is aware of how I feel, and some of my friends have heard bits of it, but I have never really sat down with someone and just poured it all out, and perhaps I will one day. So yes, at times it can be quite difficult. There are days where I watch Jacinta and see the signs of Down syndrome on her and it really pisses me off. Not for me, but for Jacinta. But these moments are few.
But I love Jacinta just as much as my other daughters. It is the same timeless love where I can’t really remember a time without her in our lives. I wouldn’t even want to conceive of not having her. She is such an amazing girl. Despite all that she has been through she has remained optimistic, positive and gives me daddy kisses and cuddles which are very cute.
But I do wish she didn’t have Down syndrome. To me Down syndrome is just like any other physical problem. It means that Jacinta is prone to other medical conditions and illnesses. It means she has to work a hell of a lot harder than anyone else to achieve the same development. I don’t believe in any way that the extra chromosome has any bearing on her personality. I strongly believe that who Jacinta is, is not in any way a byproduct of the Down syndrome. I have seen some families asked, “If you could cure your child of down syndrome would you do it?”, and many say ‘no’, reflecting that their child would not be the same loving daughter/son that they have. Without meaning offence to anyone, I vehemently disagree with this viewpoint. If someone came up with a cure for Down syndrome I would ensure Jacinta received it immediately. In the same way a broken leg does not dictate who a person is, neither does down syndrome. But just like a broken leg, it sure can make life more difficult.
Now that Jacinta is born and a part of our lives, in retrospect would I have got genetic screening? No, not in an instant! She is my daughter, and despite the difficult times I love her and could not conceive of life without her. I have read stories of families who were pressured by doctors and families into getting an abortion and my heart breaks for those families as I know the guilt and regret they will feel for the rest of their lives.
We have had such incredible support. My parents have been complete stalwart troopers and have gone well above and beyond the call of duty. Do they treat Jacinta any differently from my other two daughters? No, not at all. I have been so blessed to have some of the best parents. This situation has only brought our family closer together. I will be grateful to my parents forever for their support during this time.
I think it is sometimes more difficult for friends than it is for us. There are times when I have been out with friends and I can sense they don’t know what to say and so end up avoiding the subject of Jacinta. This I completely understand. It can be tough. But I know my friends and I know they care. And even when they don’t say anything to me for fear of opening up a difficult conversation, the knowledge that they care has supported me greatly. If you are a friend in a situation like this, don’t underestimate the effect of just caring, you may not realise that what might seem like nothing can make all the difference. I am extremely grateful for my brilliant friends.
They say that adversity is the true revealer of character. My wife is character all the way. I know it has been very tough at times, but she is the strongest person I know. She is such a fantastic mother to all our children and loves them all incredibly. I cannot praise her enough for what she has done.
So, overall, despite the difficult times and challenges to overcome, life with Jacinta trumps life without Jacinta any day of the week. I love all of my daughters and wouldn’t trade them for anything. With major advances in neuro-plasticity I know that Jacinta can overcome the conditions brought about by Down syndrome and reach towards her own goals in life. I am optimistic about the future and don’t regret a day of it. Of course I wish Jacinta didn’t have Down syndrome, but it’s life and its full of all sorts of trials and tribulations. But it is our life and I am glad to have such an amazing family.
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