What's the point?

Recently I read again an article that I first read about three years ago. At the time the subject of the article bothered me and I was incensed. Now in rereading it, I am saddened by the attitude of the parents in the article. 

The article covered the story of two Melbourne couples who were suing their hospitals for failing to diagnose their unborn children with Down syndrome. 

Originally I was incensed because they were looking at their children as a problem and I wondered how they could possibly look their children in the eye and tell them honestly, "we're suing because we were denied the opportunity to abort you". 

Now I look at the article and as well as the above I look at the reasons they give for wanting to sue. They went through pain and anxiety because their child was in intensive care and had heart issues etc. They are upset because they had the opportunity to experience negative emotion. What is that? 

It seems to me that we've reached a point in our over-litigious society (which, thankfully, is much less so than some) where we expect life to be pain-free or we get compensation, as though we buy our life experiences in a shop with some happiness guarantee attached.

My parents used to throw around that old gem, "respect your elders", from time to time. I think it was a kind of last resort, "just do what I say", kind of thing. I used to think it was a load of bollocks and that no-one much knew better than me. Of course, I was seven.  Then I was eight. Then I was nine. I kept being much righter than most people about things. I really couldn't see how age made you worthy of respect.

Then my father died, when I was 20. I learned a few things from this experience and made a few key decisions, such as never getting myself into the situation where single parenthood was likely, because I realised how good I had had it when I didn't need to feel responsible for my parents' happiness or health or wellbeing.

Then his brother died, which somehow reinforced the loss of my father and made it worse.

Then, once I was married and we decided it was time to have children, the first time I was pregnant it was confirmed because I had started to miscarry. The following two years taught me how it is when you fear you may never have children. The constant wondering about where you are in your cycle. The simultaneous grief at the beginning of a new cycle when it is certain that you aren't pregnant but at the same time relief that you don't have to think about it for a couple of days. Those years drove me half mental. Actually getting pregnant was one of those impossible things that defy the tenets of medicine but, you know, I don't care!

Then I found out a lot of things about myself (turns out I can do a really scary Mum voice - it scared my husband when he got a dose) as I changed all my ideas, one by one, about how a child ought to be raised. Here and now I apologise to my eldest for all the things I let her do that I ought not to have and all the things let her have that I ought to have said 'no' to. I also apologise to my second for any other errors of a similar nature that I have made on her part. I don't think I've had a chance to really start stuffing Jacinta up yet so I'll leave her for later!

And there have been discoveries, too about how far you can let things go before they'll really blow up in your face - not so much gas leaks as relationships - with your husband, or the landlord….all sorted now!

So then Jacinta arrived, and man oh man, was there a lesson or two to be learned. Looking at the big picture, prioritising better, chilling out about so many inconsequential things, stepping up and making myself heard, confronting dire consequences and possible eventualities, entering unknown territory without balking.

And then there was an election, and I saw these candidates who were younger than me - some of them in their early or mid-twenties, and I just couldn't take them seriously. Where had these people been? What had they been doing that so qualified them to make decisions on my behalf? I simply did not believe that they were able to do the job properly. I couldn't believe that they had seen enough or experienced enough, and it's these things, these tough things, that teach you something. It's not easy times or comfortable surroundings.

So when I hear about parents expecting to be recompensed for having the opportunity to grow and learn, I laugh a little on the inside, because the joke is really on them. By doing this they are actually robbing themselves of the opportunity to grow. They will probably always resent the situation they're in since that's what they're being paid to do. They couldn't honestly take the money if they started enjoying themselves, could they?

But that is what makes it the most sad. If they have asked for money because of pain and suffering, they have to make sure there is pain and suffering. Heaven forbid their child turn out to be healthy, charming, funny, the life of the party and well-loved by his peers. That poor child will always know, at the very least, that life is meant to be hard because of what his body has.  I hope, at the very least, that he or she learn some valuable lessons from this life they have arrived in. 

Do not spare me the pain lest I should miss the bliss of sublime comfort.
Do not spare me the riotous screaming of children lest I should expect serenity and concentration in every moment.
Do not spare me fried liver lest I should think nothing of a delicious meal. 
Do not spare me fear and anxiety lest I should take for granted peace of mind. 
Do not spare me a good drenching lest I should fail to notice the magic of a warm, sunny day. 
Do not spare me interruptions lest I should not appreciate the relief of the opportunity to do a wee in peace.
Do not spare me poverty lest I should be ungrateful for an abundance.
Do not spare me a bad hair day lest I should miss the exhilaration of the day everything goes right. 
Do not spare me moments of despair lest I should think that hope is a constant. 
Do not spare me failure lest I should view each success as though it was never wonderful. 
Do not spare me tragedy lest I should believe that happy endings are a God-given right. 
Do not spare me any of these, lest I should coast, shielded, through life and never grow or learn a thing.

Where did that year go?

Wow!

This time last year I was slightly shell-shocked, having just waved my husband off to follow the NETS van (Newborn Emergency Transport Service) to the Women's and get Jacinta settled in, then working out this whole expressing business and feeling like a fraud pretending to be a post-natal mother in order to get a free bed and cups of tea in my own special room.

I waited a couple of hours before ringing the Women's to see how Jacinta was going. I now know that instead of the nurse thinking I was silly for ringing at 1am, she would have gone straight over to Jacinta's bed on hanging up and said something like, "That was your Mum. She was just seeing how you're going. She's expressing some milk for you in the other hospital and she'll be in to see you in the morning." (I know that because that's what they did every time a baby's Mum rang whenever I was in.)

That awesome phenomenon whereby any number of years can go by yet you can still feel the exact emotions and sensations as you did during a certain key moment is certainly in play. I've spent this weekend reliving all the moments that occurred, since it was such a monumental event in so many ways. It was such a relief really at the beginning. All I wanted was to come to hospital and not be sent home. If I could deliver pretty quickly that would be good too. Done! Then it got interesting as we all know!!!

So this is where we started a year ago. At birth, there were no moments to have a little snapshot in the delivery suite or even in the special care nursery. It just wasn't the moment. The first photo of Jacinta was taken for us by the nurses at the Women's before they put all her breathing tubes on. They gave it to us when we arrived the next day.

That's just a feeding tube in her mouth and a lead for monitoring her heart rate on her chest.  There's also an intravenous line you can't see in this, through her belly button, called an umbiline. The tape is where they're about to place the big plastic tubes for the CPAP machine. (I forget what it stands for but it helped to puff out her lungs so she could get a better breath, like if there was a machine to do the first blow of a balloon to make it all easier.) The red thing is the hat that went around her head to hold it all in place. It used to get very itchy and she'd try really hard to get it off.

You can't see in that picture, but she had super long nails. The comments she got at birth were compliments about her nails and her eyelashes.
I didn't get a shot of the lashes, but.....

That was the day I had to cut them. The nurses (who aren't allowed to cut them) had been really kind about it for about a week, and it was way overdue. So sad, ruining her perfect birth manicure.

So, a couple of hospitals, a heart op, some growing.......and we're 1. Just like that!

(That'd be gluten free, dairy free cake and low GI icing.....)

We're aching to crawl, clapping, laughing, talking up a storm with some "blink and you'll miss it" words. Suddenly we're much more distracted when breastfeeding and actually chomping on food all of a sudden, which is a great step forwards, but means I'll have to be really on top of how much starch we're having and fluid intake other than breastmilk or we'll get clogged up pretty fast, I'm guessing.

Time also to get moving on more Institutes program since I sacked the physio.....

Thanks all for sharing in this first year. It's been such a big one.

Here's to more big wins in 2014!

So where are we now?

December! How did that happen?

Well, things are rocking along here. Jacinta's still doing just fine. Maria had a go at treating Broca's area and Wernicke's area (the areas in the brain named after these two fellows, which relate to speech input and output). Since we started that she's been chatting up a storm, which is ace. Not to say that she was short of topics before but hey, she's my daughter, what can I say?

And we're now at a bit of a crossroads. I am finally getting organised on the home front. The house is clean more often than it is messy, which is a first. The washing is normally up to date. The big girls' room has had a number done on it, loads of soft toys evicted and a minimalist look now in the decor which means it gets tidied every night and never more will we be searching for a clean patch of floor in there. (Well, until they get old enough to demand the right to clean it themselves and absolute privacy...)

I'm getting fitter because I've joined my friend's team for the Oxfam 100km walk for next May - I know, I'm a lunatic. My husband seems to be finally getting on top of his body issues and the seizures and migraines are few and far between. We seem to be climbing out of the general disarray we've been in for the last 18 months. This means that we've been able to do some of the IAHP program with Jacinta. It's been patchy and we're trying it on for size a bit, but it's happening. She's getting pretty strong and dying to take off but not quite moving forward yet. I'm keen to do the home program with IAHP but we have to take an overseas trip in April and Jacinta is still meant to be sleeping 4 hours a day plus we're trying to transition to solids - this doesn't leave much time to do 3 hours of therapy each morning!

So I've been entertaining the physio twice a month. She comes over and does some things to show Jacinta things that are steps between being on her tummy and crawling. It's a bit odd though, that they're doing all these things and not just encouraging commando crawling. It seems like pulling someone up by marionette strings to get them to walk rather than letting them work it out themselves. It seems to me that if you do some patterning to show them the basic crawling manoeuvre and give them a track to crawl on, making conditions as ideal as possible, commando crawling will happen. This will strengthen their core muscles and arms and shoulders and quads which are the crawling muscles. (When I say crawling I mean American creeping. Commando = American crawling)

Anyway, she comes and gets all excited about how well Jacinta's doing at developing very nicely on her own as though it somehow has to do with the physio. She plays the children one at a time as though they're her own patients and has them doing things as though they're circus animals, and doesn't stop her own agenda to watch the thing that they want to show her and grant that importance. Generally I find her attitude towards children quite rude. From Jacinta's responses I get the impression that she doesn't like her attitude either.

She was over a week ago and we were talking about what to do and where to go from here. The service I'm with is a government funded service and we have a certain amount of funds to use for early intervention. She and the social worker lady (who doesn't have much to do on our case but co-ordinate)  were asking what we wanted to do for therapy. It was as though I was having to say whether or not we keep going with physio. I have no idea what they normally do, so I asked them what they normally do. The physio told me that they normally have a goal in mind and they achieve that and then the physio steps back and the speech pathologist or occupational therapist comes in to do some.

We agreed on a goal of 'moving forwards', which Jacinta's nearly reached. The physio was talking about speech pathology being next and I mentioned in passing, since I'd been talking about doing IAHP next year with no special reactions, that we had been treating speech areas with NAET and we'd seen some good improvements. The social worker didn't have any info on NAET and asked what it is. I gave her a brief synopsis of how it works, how I found it and how I've found it useful on various members of the family.

What happened next was very interesting. The physio basically said, "You don't need to justify or explain it to me. These changes in speech are what you would expect from the work we've been doing physically and could just as likely be attributed to the physio." (Bear in mind that what the physio does once a fortnight is done once a fortnight and not in between.) "Whether I agree with it or not (and I don't agree with it) I just continue to do as I do and you can keep doing that. It's not hurting anyone. If it makes you feel like you're helping then you should just keep doing it. I have other families who spend thousands on supplements and it makes them feel like they're helping their child and I just let them do it and keep on doing what I'm doing."

I was slightly stunned. I was listening to all this wondering if she could hear what she was saying and if she realised that she was speaking her thoughts out loud. Confrontation is my least favourite thing, especially since I take time to process things which are stated arrogantly as though iron-clad truth when actually quite full of holes and when the speaker makes out that I'm stupid and we all know that. I don't remember anything else much from the meeting after that, but I decided once they'd gone that the physio has to go.

I've been in two minds about her anyway, since I don't really do what she shows me and I don't like the way she treats the children. (Which, to be fair, is not mean or harsh in any way, but it shows that she doesn't respect their intelligence.) I just can't have someone in the house who thinks that way about me. I can't sit there and even pretend to be listening to what she says when I know she's looking at me and thinking what she's thinking.

So I guess come Christmas it'll be time to get this program happening properly, every day. We're nearly set up to get it going. I've come to realise that I have to make myself a strict homebody, at least in the mornings. We're still not 100% on the diet but we're consistently better and they did say to get it in on a gradient. It's a small gradient, but it's happening. The home environment is better. Things are improving bit by bit.

The thing that people are noticing most at the moment is Jacinta's size. She presents like a much younger child. It's actually interesting that people love her and comment on how beautiful she is, then ask how old she is and are a little surprised that she's nearly 1 (!).  I usually attribute it to the heart condition which, to be fair, did inhibit her growth up until about 4-5 months. The other factor that people won't realise is that my eldest was also very petite as a small child. She was always getting comments that she was tiny because she was on the small side. I remember comparing my health centre book with hers to calm myself down after comparing her to the percentile charts. I must pull mine out for interest's sake. I think with all the factors in, it's not a concern.

There has only been one time in her whole life where Jacinta was openly picked as having Trisomy 21 out in public. Recently my husband and I were killing time out at a cafe and two ladies saw Jacinta and asked how old she was. Then one asked "how is she going, developmentally?". I should have triggered, because people don't just ask that, but I gave the usual, "Pretty good - she had some health issues at the start, but she's catching up...". Then the lady said, "there's our two over there". I looked at the table over the other side of us and there were two women in their late '20s. They looked over and said 'hi' and I saw the features of Trisomy 21 on their faces.

These women were well dressed, well spoken and very sociable. They came over as sociable women do with babies and said 'hello' to Jacinta. Their Mums said that they'd just had a swim meet, that they both swam competitively, that they both ski as well and that this year they'd been to several countries and had been many places in the world to compete in sports. The daughters told me about what they did for a living and the travel they'd been doing and were chatting about how difficult it was in Italy trying to stay off the gluten! (I can relate...)

They asked about what we were doing for her in terms of a program. I gave a basic outline and they were glad that we were going for it. The Mum we spoke to first said that the main thing she tells everyone she meets is that you just keep your expectations normal. You don't aim low. You can always adjust them but keep your aims high until you know otherwise. She had many practitioners tell her things were impossible and she would always ask them to prove it. Her daughter went to an exclusive girls' school from Prep to Year 10 with no aide. She kept up with her siblings and was expected to. She told us to keep aiming high. She also gave us her details in case we wanted to ask questions.

This was the most refreshing meeting I'd had in ages. These ladies were 27 years old. Imagine the possibilities for Jacinta!!!

Things are exciting, even though every day Jacinta looks less and less to me like there's anything amiss in her chromosomes and it's easy to get complacent.

Watch this space.
(I have so many photos to upload. I promise, next time!!)

Down syndrome awareness links.

Well, as promised, with just minutes to go of the last day of October, here is the second of my blog posts dedicated to "Down syndrome" (Trisomy 21) awareness.

I went looking for a list of common features of Trisomy 21 and I couldn't find a complete list. Here's a rule of thumb which her head paediatrician from the NICU at the Women's told me. If you hear that something is common with Trisomy 21, it always occurs in typically developed bodies too.

A second fontanelle is something that pops up sometimes in babies with Trisomy 21, and also sometimes in babies without Trisomy 21. A heart defect pops up in about 50% of people with Trisomy 21 and it also pops up in many people without it. My Mum had one of the heart issues that Jacinta still has (PDA) and it wasn't diagnosed until she was 63. Her father also had a hole in the heart.

If you look at things that way, you'll see that having Trisomy 21 doesn't have to put anyone in a separate category for special treatment really. Depending on how well they can work with or around their limitations, individuals can carve out very meaningful lives. Plenty of medically typical people do a lot worse than your average person with Trisomy 21, despite having no excuse!

There are so many things popping up online that challenge the old-school thinking re Down syndrome, it's hard to remember them all. I've listed below a few that I remembered in particular and managed to track down again.

This first one is something I came across a couple of weeks ago. It's just a lovely article about these two being voted homecoming king and queen - and it was a point of respect, in particular, rather than condescension.
http://news.ninemsn.com.au/world/2013/10/15/10/57/down-syndrome-couple-win-homecoming-king-and-queen

This one is a link to a preview of a DVD. I haven't watched it, but it's an interesting story which was captured on film. It covers the story of Monica and David who got married and then had to really work hard to convince their parents that they needed their independence.
http://www.youtube.com/watch?v=Su78LXwMJtY
- Monica and David

Karen Gaffney is a legend. She just busts through glass ceiling after glass ceiling. Awesome.
http://www.youtube.com/watch?v=VHhWdp2qskc
 - Karen Gaffney

Tim Harris must be one of the best bosses ever. A friend of mine saw this video and wants to open up a franchise store - so long as everyone can do the 'going to work' dance.
http://www.youtube.com/watch?v=1OT5iU0RcAM
- Tim Harris

This is a great article about another person who has won the respect of the people around him and rewarded for that.
http://www.irishtimes.com/sponsored/the-mayor-the-merrier-1.1409428

This guy is just plain fit. I did a double-take when I saw these pictures - a little bit like in Harry Potter 4 when Harry was in the bath and looking a little too grown up.... Yet another paradigm to conquer!
http://www.dawisonpinheiro.com.br/blog/?p=6691
-Renan Codogno

This is cool. Basically a young lady not-quite-going-off at the world in general.
http://www.youtube.com/watch?v=9gaSx44pEvk
 - Don't Limit Me

Highlights for this week:
We saw the Paediatrician (who first gave us the diagnosis when Jacinta was about an hour old) yesterday. When she looked at Jacinta, she said, "you look so different!!". She was very impressed with how good she was looking.

We saw the Osteopath today who was very happy with the shape of Jacinta's head. She says it's looking much rounder, not flat like it did and like many children she sees with Trisomy 21.

Yay!! Go Jacinta, go go go! (That's one of the chants we sing when she's on her crawling track...)

I hope some of the links up there give you some idea of the crazy notions we have in our heads and what we see as the nonexistent glass ceilings for Jacinta to work within!

I'll post photos of that lovely head next post. Very soon!

Respect

So it's October - how did that happen??

And it seems that October is International Down Syndrome Awareness Month. How fascinating. There are only 12 months in a year and Down syndrome gets one of them. (Along with about a dozen other things to be aware of, but it sounds pretty impressive!)

So this is interesting. Largely, for me, it is interesting because Down syndrome is something which people actually need to become aware of. For many years ladies have been checking their boobs for lumps and gentlemen have been fronting up to the doctor and presenting their rears for digital examination. In contrast, Down syndrome has changed. The early intervention and therapies available are showing that all over the planet there are extraordinary people emerging like butterflies from a chrysalis.

So I'm quite pleased that planetary awareness is being pointed at Down syndrome - even though I don't use that term any more!! Does anyone know who is in charge of nominating awareness months worldwide? Is there a schedule up on some planetary tea-room wall with different months set aside for different purposes? Is the rightful owner of the month drawn out of a hat? When calendars are printing up the next edition, who do they ring to find out whose month is whose? If you know, feel free to leave a comment in the comments!

And so how do I want to spend my October most effectively? We all know that I set very little store by the Down syndrome paradigm or by the expectations still held by many in the field of allied health in terms of what can be achieved by a child and then an adult who has "Down syndrome".  I don't like to use that term actually, because it just doesn't really relate to Jacinta at all. When I look at her I see a child who is just as bright as my other two. Her mobility is slightly delayed but if you take into account that she didn't get to start working on that really until she was about 5 months old, I think she's entitled to special consideration.

Her language and manual dexterity are about average for her age. She's doing really well. There are a couple of tiny things in her facial expressions that my other two didn't do and her nose is still flatter than that of my other daughter who was also born with almond-shaped eyes. People certainly don't look at her and ask what's wrong. Either everyone in the world is really good at poker or they don't see anything amiss. There's nothing different about the vibe in conversation from my first interactions with my eldest and now. So I don't think that the Down syndrome descriptions are helpful in terms of things to expect and make people aware of. If it's a list of things to treat and look out for to resolve, then fine.

I think that awareness needs to lie in two areas. The first area is that of early intervention and expectations. It is becoming increasingly obvious that when you treat people like intelligent and able people they have the chance to reach for that standard but when you treat them as disabled simpletons they will only reach that far - unless they have a great deal of mettle and are able to disagree wholly on their own and make that difference on their own steam. This is happening, slowly.

Things such as "Michelle and David", a movie about a couple who get married and have to fight for their independent life; the court case where a young woman with Trisomy 21 is appointing other legal guardians because she doesn't want to go to the group home where her parents want her to be; Karen Gaffney being awarded an honorary PhD; Tim the restaurateur who serves breakfast, lunch and hugs; the man in Ireland (I think) who has earned an official figurehead title through his fundraising efforts, the young woman who made the video "Don't Limit Me"; and the list goes on, are all trailblazers who add weight to the idea that it is completely unknown what the limits are for someone who has Trisomy 21. In fact, when people with Trisomy 21 are getting married, having children, earning tertiary qualifications, starting businesses or holding down steady jobs, doesn't that make their limits as nonexistent as those of the person who lives next door who could also do any or none of these things?

The second area that I think needs to be addressed is that of respect. This is something that people with Trisomy 21 are striving for but in asking for it their advocates often fall short of the mark. I hear often about 'acceptance' and 'inclusion'.  If I arrived in a group and needed to make a life in that group, I could be accepted. If they were feeling kindly and not wanting to hurt my feelings then I'd be included. This puts me at the mercy of their kindness and I have no power of my own. If I do something that people think highly of, or I demonstrate that I can do something like that and will if necessary, I will have commanded their respect and be an equal player in life.

There is an 'R' word that people find offensive because it is used to label or derisively describe people who are less intelligent than the average. People with Trisomy 21 have been labelled with this word all too often by association, being by their facial features easily identified with other members of this group.  True, in the past when T21 kids were shut away and treated like idiots (literally) they lived short lives and functioned as idiots. Now that they are nurtured and encouraged to grow, we have no idea what this generation of kids with T21  are going to achieve.

I think that in the future the T21 kids will command a lot of respect since people will look at them and see what they have overcome to be doing what they're doing. I also look around and I see disabled people walking (or not walking) around. Since Jacinta's heart surgery I have a newfound respect for the disabled. When I look at someone in a body which has real problems, we're not talking a bad hair day here, and think about what it takes to get up in the morning and actually leave the house, I deeply respect them. When I think about the disrespectful things that are sometimes said to them or done to them, which they can't easily counter since they are less able to use the body that they are having to use,  I respect them even more for getting out of bed and leaving the house.

We all get up, shower, eat, get dressed and leave. No big deal. These guys haul themselves up, have a very complicated showering process, if they get their own breakfast using crutches or wheelchair bound  or shaking uncontrollably it's not straightforward, getting dressed with out the full use of two arms and legs is tedious and frustrating at times (ask a person with a broken limb or a pregnant lady) and leaving the house is not just a simple case of walking out the door. That's just leaving the house!!! Then they get on with their day, which must drive them half mad sometimes. There are able-bodied people out there who can't face the day when their day has nowhere near the level of difficulty or disrespect that these folk have to experience. My hat is off to the physically 'disabled'.

But I also think this runs deeper. When I think of it, I think of problems which abound worldwide and wonder what would happen if we brought back this old-fashioned concept of respect. There used to be a mantra, "respect your elders", which no-one much says any more. The older I get, the more truth I see in that statement. There is something to be gained by an observant person when he lives a long time in a full life.

The things that really bother me about society are that there is a fundamental lack of respect across the board. The tendency to criticise without having any notion of the reality of what or who is being criticised is prevalent in this society and I see it across Facebook in particular. Everyone's an expert it seems. The concepts of 'haters' or 'disrespecting' are quite new really. There was a time when manners prohibited this sort of behaviour. Then the post-war era happened and rebelliousness became fashionable. This brought a sort of coolness to treating others badly.

Once I had a Facebook friend. He was known through other friends and he was quite young, in his late teens. We got along quite well, until he started hanging out with some different people and his posts started to sound something like, "that awkward moment when you lean out of the car to throw a bottle at a (insert R word here) and he turns to look at you just as you've thrown it.........etc", and at that I unfriended him.
What on earth makes anyone think it's ok to a) do something like this and b) talk about it like it's even remotely funny? What on earth makes anyone think that they are in a position to treat anyone with such disdain? It's exactly the sort of person who would do this who is not in a position to treat anyone with disdain. This sort of person is to be pitied.

If we look around the world, we see religious intolerance. Different religions failing to respect other religions. Non-religious folk failing to respect people who do follow a religion. Religious folk failing to respect those who feel that until a religious philosophy is proven to them they cannot subscribe to any one.

Parents and teenagers fight. Imagine if parents showed their teenagers the respect they would show their favourite movie star if he/she showed up at the door. You'd never scream at and nag Sean Connery or Meryl Streep if they paid a visit. You'd be polite and if they were upset you'd go to great lengths to find out what was bothering them. Imagine if teenagers treated their parents like their favourite movie star. If Kristen Stewart or Robert Pattinson offered to help them tidy their room they'd be in there like a flash. They'd be queuing up to do things for these guys. They'd sweep the floor, take out the garbage, wash the clothes. They'd even do their homework if their idols offered to help them.

How would discipline of children play out if there was respect shown to them, as though we thought their day was actually hard work and they actually achieved something? I am willing to put my hand up and say that there are times when I fail to respect my children and fail to show them respect and my parenting reflects that - and their behaviour, in turn, reflects my parenting.  Sad, but true.

So yes, it seems to me that respect has been shelved for this day and age, but what if we took it out again, shook it off and tried it on for size? We'd all be a lot calmer, for one. Big bosses bawling out the whole staff at a meeting just wouldn't occur. Road rage, gone. Rude comments to strangers, off the agenda. Insults, mistreatment, physical/mental abuse.......the list goes on and is all gone. Manners - in. Courtesy - in. Consultation - in. Listening - in. Kindness - in.

So, it has taken me half of October to finish this post. I was going to suggest that we spend October showing respect to others - disabled, special needs or not, and see where it takes us. Seems we still have  a fortnight or so to give it a try - or we could just keep doing it longer. So my challenge is to look at whoever you see and instead of dismissing those you normally would, have a think and find a reason to respect that person. There will usually be one, at least.

If we all tried that, well, our T21 kids would be well looked after just by being people and we could all just carry on helping them to achieve their own individual goals and dreams.

My next October post will be pointing out a few people who have been living lives I'd be very happy to live, despite having the challenges that T21 throws at them.  Until then, live well!!

What you lookin at? 

Endings...

Well, this is meant to be the full story. It wouldn't be right to post all the good bits without the other bits.

I've posted about Jacinta's birth, her trials, her surgery, her triumphs.

I've posted about how my perspective has changed so much since she was born. This was largely because of the children I met in the RCH (Children's Hospital) and their parents.

When Jacinta was first in hospital after her surgery I was in the tea room, I think the second day. The Cardiac and Intensive Care area has a very chatty parents' lounge, so as I made my cup of tea I was chatting to the parents there. Given that 50% of Trisomy 21 patients have a heart condition it is not surprising that there were three patients (that we know of) in Intensive Care at the same time who had Trisomy 21.

This day I met the Mum of one of them. He was a little boy from a town about 2 hours away. Until about 3 weeks earlier he had been getting on with the business of growing up and his Mum was telling me that she was just starting to get onto the idea of supplements and had made an appointment, or was about to, with a naturopath to get the ball rolling. This had been interrupted by an illness that had turned into a really bad cough and had got him admitted via emergency and sent down to Melbourne.

We were talking about my story and my friend, Kristen. This Mum asked if I was on a particular facebook group, which I hadn't heard about.  She got me added that very night. I was keen to meet whoever else was in hospital and I made a date for Saturday morning to have a cuppa with anyone from the group who was around. It turned out that the Mum whose daughter was in the room across the hall from me was also from this group and when we met in the parents' lounge we were laughing because we'd been checking each other out, wondering if it was the other that we could see through the glass walls. (This began a long running joke of texting or facebook messaging each other rather than just going to the door and speaking to each other. )

It just happened to be my birthday that day and so the Mum from across the hall and the Mum and Dad from 2 hours away sat down to help us eat my star-shaped chocolate ripple birthday cake covered in icing, marshmallows, Smarties and snakes. (That right there is a recipe for diabetes.) It was delicious, if a bit sickening at the same time.  At this point we knew that Jacinta would be transferred to the ward sometime soon. We also knew that the girl across the hall was making good progress considering she'd only been there a day or so.

We didn't know much about the little boy from 2 hours away.

It was a day or two later, when greeting his Mum in passing in the hallway and expecting to exchange the usual pleasantries, ("How are you guys going?","We've turned the oxygen down, on high flow now"), that I saw the look on her normally beaming face, which told me there was something awfully wrong. When I asked if she was OK she told me that the doctors had worked out what they thought was wrong with her son. It was a very rare condition and he wasn't expected to live much longer.  This was the day they received the news that there was a very high likelihood that their little boy would not be going back home. It was the day their world really started to crumble for real.

Over the next few days I learned that on top of his heart problem, the lung condition that this little boy had was so rare that less that only 9 or so people in the world had it. They were trying all the things they could to treat it. If these didn't work then it was a battle to keep him alive until he was big enough for a heart/lung transplant. He would have to be 6 years old. This was the sort of situation that our hospital is the place to be in if you want it sorted. They were contacting hospitals overseas to find out everything they could to treat it and any new things that were being done anywhere they could find it.

By the time Jacinta was going home a week later they had tried almost all of the treatment options. He was still in intensive care. We went up to his room to say goodbye. His parents had met Jacinta once or twice by this time, since she'd been up and about for a day or two. I still hadn't met their little man and he was just being put to bed as we were leaving so I missed him, but we said farewell and wished each other luck going forward. Within a few weeks they had run out of treatment options. His lung disease had gone from rare to unique. I was coming in for checkups for the next few weeks so I'd pop upstairs whenever I could to catchup with the Heartkids guys. Heartkids is a charity that supports families whose children are needing heart surgery. It's a really good bunch. They have a morning tea a couple of days a week in the  Parents' Lounge of the cardiac ward. The guys who run the Victorian branch are lovely.

Things were up and down from then on. There were little improvements then big ones. His parents decided to celebrate his birthday every month since they never knew which would be his last. They were holding a tiny strand of hope. If everything went 100% perfectly he could still make it. That was a very big 'if'.  Every month they would post pictures of his celebration. He made it onto the ward a month or two later and from there they started talking about going back to his local hospital.  It was a very stressful scenario, a two-hour trip where any equipment failure or emergency on his part could mean the end of the line for him. Finally it happened. After much tense discussion between the doctors and his parents they successfully transferred him to his home town. He was set up at the local hospital.

His parents had to face the reality of getting him home on oxygen and needing lots of equipment. This meant modifications to the house. They had also been in Melbourne for several months by this time and hadn't been working. Being in hospital is quite expensive when no-one's feeding you. A friend set up a facebook page for them, where people could donate to help out with the costs. The numbers on this page started growing. It hit 1,000 in a week or two. Someone had the idea to hold an auction of donated handmade items. The numbers of page followers hit 1,500. The auction was a huge success. His parents were overwhelmed. Then the worst case scenario happened. He came down with a virus.

The world turned upside down from that point. He was unwell and continually unwell for about a week. Suddenly I checked back to find that he'd been transferred back to Melbourne with septic shock. He was in Intensive Care once more, where we'd first met them. He started to improve a little bit. Tiny steps in the right direction.

Then suddenly there was a post from his Mum. He had taken a turn and they didn't know what was going to happen. The ball was in his court and their hearts were breaking. All over the country broken hearts were in mouths waiting to hear what was happening. A sea of pictures of this little boy broke out as friends and supporters changed their profile pictures to his face, to show his parents that they were in our thoughts.

The next day came the message that this little man had spread his budding angel wings the evening before.

Finally he could be free.

Tomorrow is his celebration. Jacinta and I will drive up wearing our brightest clothes as requested, to help set balloons afloat and blow bubbles for him. Tonight I told my eldest what was happening tomorrow and why. "Poor Blake's Mum & Dad", she said. Though definitely the sentiment, it really doesn't acknowledge the enormity of the loss, and yet it so simply pinpoints what's at the heart of this huge community, 2,633 people strong.

The loss of Blake has really brought home how unique our situation is. This could have been any one of our children from the facebook group. I know that several mums were feeling the same way. It's surreal to be a part of a group where all our kids have their own unique medical issues. I'm sure no-one pictures their life this way until they're there.

A few times on the group there have been shout outs to pray for a little person who's in hospital and seriously ill. Every other time they've pulled through and gone home. Even in Intensive Care we were in the cardiac section where, as I mentioned, everyone was pretty much post-op and in no danger much.

This is the first time it has been really real to me that we belong to a group where sometimes children die. There was a video that Blake's Mum and Dad had posted back in Feb this year and they re-posted it this week. How bittersweet it was to watch the video from before I knew them, before they had any idea that their little boy would not make it, but how lovely a captured moment it was.

I have had this excerpt in my head all week.

From Alfred Lord Tennyson's poem In Memoriam:27, 1850:

I hold it true, whate'er befall;
I feel it, when I sorrow most;
'Tis better to have loved and lost
Than never to have loved at all.

For anyone wanting to support Blake's family in any way, the Facebook page 'Blake's Million Smiles' is the place to go. 

Progress report

So it's been an interesting couple of weeks.
About two weeks ago I took Jacinta to her weekly NAET with Maria and found out there was a new vial. It's a kind of trial one, I think, so I'm not going to say exactly what it treats because very few practitioners have it, but it's a pretty basic thing. It can be put with any other thing.
Jacinta was treated with this vial and I swear that by the end of the 20 mins of waiting, her face  had changed somehow. She looked different.
On top of this, she started baby talking like someone had turned on a tap once we got home. I really wasn't sure if I hadn't just imagined all this and I commented to my husband, who reserved judgement until a little later when he commented that she was really talking up a storm.

So of course, to make things very straightforward, I also started up with glyconutrients again the same day. No particular reason, I simply got around to it. Thus I have two possible catalysts for  this change.
Another thing which started last week is that the local early intervention service finally sent around the physio who had been very hard to get onto. She left a feeding and other things chair which she says works the core abdominal muscles to help with crawling.

It seems that in modern physiotherapy there's not much emphasis placed on commando crawling (cross-pattern crawling on your tummy) and all the emphasis is placed on crawling (on hands and knees - creeping, for my US readers). It seems a little bit funny to put a baby in a chair for preference to work his/her abdominal muscles. I tried commando crawling a few times and each time my midsection got a really good workout!


Anyway, the physio gave me quite a few things to do and basically all I managed to do was to put Jacinta in the chair for feeds and move the toys she plays with in the car up a bit higher so she can reach up high and straight out if she wants to. The physio was really happy with her progress today so that was good. She can't see why I'd prefer to do the IAHP program since it's a lot of work and doesn't address the micro-stages, like 'how do we get from the floor to crawling and from there to walking?'. Physio seems to be very much about working the specific muscle groups one at a time.

Today the physio and I discussed her role and how she could support me to do the IAHP stuff because I think she could see I'm really doing the IAHP stuff as much as I can and she wants to be useful rather than coming just to have me pay lip service to her advice.

So she's given me a bunch of useful tools and fundamental principles to enhance Jacinta's core strength that can be done as part of living - i.e. picking her up or putting her down a certain way so that she uses her muscles as much as possible. I figure every little bit will help, so I just have to remember to do them.  Interestingly, the physio seems to think that Jacinta's about to take off in a full crawl - I have my doubts that it's that close since her balance isn't that great, but I can see her working really hard on getting moving so if she can start commando crawling that will be awesome so we can get some crossing of the midline going on.

We also got our very own crawling track last week, which is longer than the first - about 9 feet I think. In addition we now have our portable black and white checkerboard which we can use for visual stimulation, putting shapes and outlines on it etc, many thanks to Jacinta's Grandad and Uncle and nearly Aunt for making it for her.

So much to think about!! The possibilities are endless!

Something else that happened this week...
We watched Tinkerbell for the first time this year and I noticed something - all the fairies have almond eyes, flat nasal bridges and petite mouths. Interesting.....