Monday, 19 December 2016

Vale Jules Watson

Sometimes I feel compelled to write a reactionary post. Usually these are for venting purposes.
Once or twice, I've felt compelled to write about a loss, and this is one of those times.

Back in early 2015 a friend of mine shared a blog post, from Five Fairies and a Fella http://fivefairiesandafella.com
I don't remember exactly which post it was, but from Jules' turn of phrase and her absolute spunky fighting attitude, I was instantly in her corner on her fight to live, when all stats said she wouldn't.

Jules and I have a few things in common, though my fairies are younger and one fewer, we each have a youngest with a Trisomy.  A mother by occupation, who had something to say, with words as her instrument and who wasn't backing down from the idea that she would just survive, even if it was not supposed to be possible.

What I loved most about Jules is that from all I have read it appears that she was very much in the same place I am just a couple of years ago, yet she decided at one point not to be scared anymore. She decided on what was important to her and began, by ticking off items on her bucket list I suppose, to actually live her life the way she had always wanted to.

She obviously began blogging, she threw herself into her writing, finished her tertiary studies.  By the time I had been following her a year, she had beaten the odds several times, not died at least once, and published a book - travelling the country to promote it. (It was such a pleasure to brighten her day during one rough moment by sharing a picture of her book on display at my local library.)

Of all the people I have met on Facebook and never met in real life, she is the one who will stay with me, because she left an indelible mark on me. She could have been me, and when you have so much in common with someone you feel what happens to them in such a real way.

Because of Jules I will be working on creating memories for my children while I am fit and well.
Because of Jules I will write down my thoughts for my daughters while I think them.
Because of Jules I will grant importance to my own dreams and goals and start living the life I actually want to live.
Because of Jules I will not let something go if I sense there is something not right with my body, but I will get it checked, because not being around for my children is a much scarier thought than any diagnosis might be.

I am sad that I never got to meet Jules. I really think we would have had a good time.
I feel for her Fella and Fairies, so much. Words seem empty, when trying to convey an understanding of the emptiness that Jules' loss must have left in its wake. I send them all the love I can muster.

And so Vale Jules, you defied the odds so many times. If anyone could beat it, you could. Maybe no-one can. You grabbed life by the horns and lived that life like it was going out of style. You will be remembered. Not just by those who knew you, but by those who would have liked to, if things were different. You made a difference and you left your mark. Fare well.


The post-surgery update.

Well, we made it to Reception J on time and managed to arrive with a fasting, but not uncomfortable Jacinta.
It's always better to have sisters there before surgery because you can giggle and have fun rather than sit there worried.
One good thing about having done it all before is that you have pretty good prediction on how long it will all take and when you'll be going in. The first time she had heart surgery I thought 7am meant a 7am op - or thereabouts. Ha! Not so much. More like 8.30. It's handy to know that when you have to keep kids entertained.

So we took family photo with Jacinta and me gowned up to the nines. Then I took her through. It was when we were in the theatre that she saw the warming thingy on the bed, looked around and got her bearings that it all got real.
With a shake of the head that clearly said,"uh-uh" she indicated that she knows how this goes. To her credit, when I said,"yes, we have to", she settled on my lap watching Peppa Pig on my phone and let them put the gas mask on. One thing has changed,  they used to flavour the gas with strawberry or chocolate topping. Now they use lip balm - grape in this instance, on the anaesthetists's recommendation.

We went off to fill in the time. Apparently orange pancakes are now a thing and The Secret Life of Pets is too scary for some children. I wound up with more than one extra on my beanbag in the cinema downstairs.  Water tastes good with lemon, strawberry and cucumber infusion. The surgeon called as we were finishing lunch. Now he had said he would finish sometime early afternoon. He always SAYS that, but then I either get a call saying it will be another few hours, or I don' t get a call til late afternoon, because it was tricky and it's not perfect bit it will be ok.

I admit, when the phone rang at 1:26pm, I freaked out a bit. I was expecting to have to kill a few more hours, and an early phone call could not be good news.

But it was! The surgeon said it was easier than expected and the result was perfect. This means that the membrane should not grow back again. For context, I have never before heard the surgeon say the word 'perfect' without the word 'not' in front of it. I think he also said the word 'pleased'. These are not words he throws around with gay abandon.

She got back to ICU by about 3:30 which is the earliest ever and they started talking about waking her up that night, which never happens. This is how other people do cardiac surgery!
By the time I came in the next morning she was awake enough to see me and they had 'extubated' her. (Taken out the breathing tube) She wasn't super happy about life, but hey, she had just had her chest ripped open and bones broken and wired back together. That's fair enough! I did notice however that she didn't want to be touched or looked at, which is what happened the last time she had Fentanyl. She was given it this time too.

Then things happened very quickly. They said she could go to the ward that day. We were waiting, not on her recovery, but on a bed in the ward.  The first thing she told me was that she was thirsty, and she drank at least a cup of cordial (you go with whatever goes down in some scenarios) in about 2 minutes. After a few hours she had come out of the Fentanyl grumps and was eating food. She scratched at her chest a lot. She pulled out her oxygen prongs. Lucky she didn't need them anymore.

This was in stark contrast to her first ever surgery, where they gave her a day off and just let her rest. Both previous times she was still well under sedation at this point. Now she was up and about. We found a good spot that was comfortable, with me on the bed under her. I'm not sure how usual this is in Intensive Care,  judging by the surprised and amused looks we got from passers-by and visiting doctors.

We went to the ward that evening and despite her disagreement with changing spaces, she just got better. Every few hours they took things out. By the Thursday they had taken out her pacing wires and drains. This had never been done with her up and about, and it was one of the most harrowing things I've ever had to participate in. She was fasting for a very long time, because they wanted to use heavy sedation, and this meant she went in hungry and thirsty to do a thing which scared the hell out of her. Then for the rest of the afternoon while she wanted to sleep she was made (by me) to go downstairs and do a chest X-ray (because we had to).

 By the end of all this, we just wanted to go home. She was over being touched, she had pulled out her NG tube which meant oral meds from then on, she disliked almost everyone who came into the room. Another room change meant we were in the low maintenance section but she did not agree with changing rooms again. Thankfully a Skype call to home meant she could relax again.

And then, on the Friday, they sent us home. I think I was packed before the doctors even came around.  It's interesting, the more we do hospital, the less we feel the need to be there. I remember the first time she went home I was a little nervous about how safe it was for us to be looking after her so soon after surgery (two weeks). Now, I am so over the nights spent in hospital, where the nurses pretty much have to do obs overnight, which almost always results in broken sleep for everyone, that I would rather look after her four days post-surgery by myself at home.

 I know that she will sleep better, will feel happier, and will have the food and drink she's used to plus the Peppa Pig DVD and whatever else she feels like doing to hand. You just get better faster at home. Everyone who knows hospitals agrees that if you don't need to be in hospital, it's better not to be there.  I did have some messages from friends saying 'don't rush home, make sure you rest', but the chances of rest are so much higher at home.

And you can drive to the mountains at your leisure and visit the Chocolaterie and Ice Creamery.....


Loooong trip to Emergency

Last Tuesday, Jacinta was recovering nicely from surgery and I was getting her dressed, when one look at her scar told me she needed to be checked in Emergency.

What had been beautifully scabbed was now scab-less and weepy. It seemed the edges were moving away from each other rather than closer together. I grabbed my bag and a snack and headed out the door, attempting to arrive soon enough to be out of there and home for school pickup.

Hahahahahahhahhahaaaaaaaa!

Now, we've done this before, twice. Once after the first surgery when some stitches must have stayed in and got infected. They gave us antibiotics and sent us home. Once during her admission from the second surgery when the end of the wound looked at bit infected. They took her into surgery and did a debridement (where they clean out old dead or yucky tissue - ewwww).

It didn't seem too bad to me so I was expecting a dose of antibiotics and to go home again. The surgeons had other ideas. They said they didn't think it was infected, but that we should stay overnight and have a look in the morning. I rearranged several meetings and a highly anticipated outing for that night. (Thankfully my eldest enjoys the ballet too...)

"Ah well", we said, and upstairs we went, expecting to be sent home the next morning.

The doctors came round and when they opened their mouths to say "you can go home", they must have got confused because "I think we'll take her in for a clean, if that's ok with you" came out instead. Every single person looking after us from that point had their money on us leaving that morning - maybe the surgeon was running the book!

So then we were fasting, and we were due for surgery around 3pm.
Now, due to issues when she had her surgery in 2015 Jacinta has a note on her file that she reacts to morphine and fentanyl.  These are both opiates. Morphine does the opposite of sedate her. She's firing on all cylinders after a hit of morphine. Fentanyl makes her inconsolable, not want to be touched, scratch everywhere, pull out wires and tubes. It turns our perfect patient, very cruisy young lady into someone who is having a serious meltdown, for several hours.

This is what happened in 2015. It was observed primarily by me. They apparently gave her some again in ICU this time and the reaction was less severe, but still there.  I don't know whether or not they attributed her changes to the drug since they don't know her normally. I do know that when I mentioned it was the fentanyl, nobody seemed particularly interested.

Anyway, when we reached the pre-op area they asked what her 'allergies' were (since she has a red name band) and when I mentioned the issue with fentanyl they said 'we'll be giving her fentanyl today' despite what I said. Sometimes there are issues with drugs that are used, where certain protocols are followed and changing them is complicated, so if they make a call that it needs to happen, I don't kick up a fuss since I'm not a fan of complicating things and inviting human error.

So she went off, it all went well, and then she came back.
Again, super thirsty. Wouldn't eat. Inconsolable, no hugs allowed (except from Daddy while he was there) scratching everywhere. Rubbing her eyes. Pulling at all the leads and her IV drip in her hand.

In the end I had to call the nurse in and request that some of the leads be taken off, since her heart rate was up, her respiration rate was low and these were not even right because she was nowhere near still, and pulling off the leads. I think she had ripped the wires out of the sticky spots and was removing her sats probe as fast as I could put it back on. It was absolutely pointless trying to monitor this, when the stickers and probes were part of the problem.

Thankfully the nurse was willing to take off as many as she could. She had to follow certain monitoring guidelines, but could see it was futile to keep everything on. I pointed out that Jacinta was seriously attempting to remove her IV. She had wanted to keep it in just in case it was needed, but made a judgement call to take it out, finding it was already half out when she did remove it.

Finally, about 7pm Jacinta settled down and had something to eat. The ward doctor had been called and she agreed with the nurse that it was an allergic reaction and it wasn't safe for her to be given it.  They gave her oxycodone (a cousin of morphine) and some zyrtec to help her settle and she stayed awake, exhausted but wired, until midnight. Looks like she's not a fan of opiates across the board (she's had zyrtec before).

The doctor started paperwork for Jacinta's reaction to be registered on record as an adverse drug reaction, which means that if anyone tries to prescribe it (which is all totally computer generated now) the computer won't let them. I think several staff couldn't quite believe that she was given it in the first place, and it felt weird to be the one being philosophical about it all.

But it's a bit of a sad fact of hospital life I suppose, one which the staff don't often see. If you as a parent observe something happening with your child, it is rare that someone will take your word for it  on the first instance without either ignoring it or questioning it. I usually takes several occurrences of a phenomenon for enough staff to observe it and do something about it. That's par for the course. I was surprised that the staff were treating it so seriously, until I realised that they had seen this and it had happened to them (particularly the nurse who barely left our room) and they had feelings and opinions about it.

I hear it was reported through internal channels. That was mentioned the next day when someone asked if it had been. Again, I was a little surprised it was getting so much attention, when it's no different in my mind from the time she was given a drug that should have been ceased and her BP crashed overnight and she had a MET call, or the times I queried drugs or doses being given and the nurses said 'oops, thanks for that'. It's just part of hospital life. We're a team and if I do my job and you guys do yours, we have the best outcome. Still, I appreciate the attention it was given. This is one of the premier children's hospitals in the world and they do pride themselves on doing things properly.

And they asked us if we wanted to go home.

We said, 'yes!'




Sunday, 27 November 2016

Ramping up for Monday

So we got the call on Friday to say that the operation that was in pencil for Monday is now in pen.
I wrote down the instructions, which haven't changed. I mentioned to the List Lady that I was happy to sign the consent form on Monday before she went under and was told, "Gee, youu're relaxed!" Meh, just practical.

Then we had the call from the surgeon - on speakerphone with three girls who were itching to get out of the car and meet their friends at the park - explaining that he won't just go in and snip the membrane, he'll also need to dissect from both sides and widen the dodgy valve to stop the flow from making the membrane build up again. More involved but no more risky, he says.

Bit of trivia: the most common side effect of cardiac surgery is infection. About 30% of cardiac surgery patients require antibiotics as part of recovery.  Another major side effect is brain damage. (Awesome) Apparently this is not common, but happens from time to time. I guess when people are stopping your heart and mucking around with it there's a chance the flow might get interrupted somewhere along the line.

So I decided we were going to squeeze as much fun into the next few days as we could, to make Jacinta so sick of fun she'll need a week of lying around in hospital to make up for it.

Who's ready for some FUN?

We started with the Challenge Christmas party. Challenge are an organisation who support the families of children with cancer or blood disorders. They run many fun events throughout the year, on top of the work they do in hospital and out. The Christmas party is amazing. You go to a racecourse and it's basically a free carnival with all the trimmings including food and drink, plus Santa who gives the kids a really cool present.
Would you believe I forgot to get a photo with Santa?
(To be honest, she enjoyed the slide more...)
We were so funned-out by the end of it Jacinta flaked in the car and my husband and I pretty much flaked when we got home. We had planned to go to another festival in the evening but opted for a 'family night in' which is code for 'movie, effort-free dinner and some tasty snacks'.

Today's plan was to go to the Myer Christmas windows - super early in the morning so there are no crowds. Then maybe a play centre. Then we had work to do. Presents for the dance teachers, food for the week's lunches, all the washing in the world to get done. I told the girls that this week they can have gluten (i.e. sandwiches in their lunches) because Jacinta won't be home to miss out or sneak it for herself.

So what actually happened was we all slept in, had the laziest morning we've seen in months, finally got dressed and out the door by about 1pm straight to the play centre. Played for a couple of hours then realised that we'd need to be home before 5pm to get Jacinta fed, showered and into bed for the early start. Shopped for teacher presents, cancelled grocery shopping (there'll be time while she's under, let's face it) and had a quick fish n chips at the playground. Then home, shower and bed.

Now it's an early night, early start, no breakfast (solidarity with the fasting sister) and straight in to the hospital. Can't quite believe it's happening to be honest, it's all been so fast.

This time we'll be trialling a tag team arrangement at the hospital. Really not sure how it'll all go, but I guess we'll see. No-one but me has ever spent a night in hospital with her, but she's not breastfed anymore and it really divides the family in half when we keep reinforcing the idea that Jacinta stays with Mum and the other two go with Dad.

I have my fingers crossed that the old 'pull a temp and crazy heart and resp rate when Mum leaves the room' will not apply - especially since she's been spending one day a week with Dad and her sisters while I've been studying for the past few months.

And although you'd think it would get easier, with so many familiar faces and familiar lingo and routines, it doesn't. I wonder if we're at the worst stage - with Jacinta fully able to hear and understand everything we say and indicating by yes, no and emphatic facial expressions how she feels, yet not able to have a conversation about it. Knowing, at the very least, how much this is all going to hurt, and none of us able to do anything about it other than offer cuddles for comfort, especially when the necessary morphine has her bouncing off the walls.

But, you do what you have to and hopefully this time it will be the last. They say there's no such thing as false hope, only false despair. (Well, I believe that is Raymond Veras' saying, actually.)
I'm running with it!

And there's even a rainbow...(no unicorn though)

Monday, 21 November 2016

It's all going on!

Today was one of those days when you leave to drop the kids at school and don't make it home again until after you've picked them up at the end of the day.

Three appointments - I'd like o say back to back, but there was a fair bit of travelling time in between them.

We're all about the heart surgery right now because we're expecting a call any day to say that it's going to be tomorrow, so of course none of these appointments had anything at all to do with heart surgery.

The chiropractor did some moves to help residual fluid drain out of her teeny tiny eustachian tubes because they're still chock-a-block full of fluid.

The Oncologist said there's no haematological reason for her tiredness and thinks it's worth considering sleep apnoea - suggested we monitor her sats while she's in hospital after the heart. Thought about her low lymphocytes and we wondered if it's worth doing anything about immunity - such as seeing an immunologist re immunoglobulins or vaccinating which might be useless at this stage - then it all got too complicated with the high incidence of low lymphocytes in Trisomy 21 cases and the incomplete thymus, so we decided to leave it til next time, when we see our usual doctor who's back from maternity leave. Effective handball there.

The nicest part of the day was at the hearing clinic. She is going to get a fabric headband which has a device inside for sending the sounds in her environment directly to the inner ear via bone conduction.
The person we saw had an old device there which we tried, and Jacinta was transfixed when it was used. We couldn't leave it there, so had to take it away and she was instantly pointing at her ears, to ask us to put it back. She was emphatic in her 'yes' when I asked if she wanted one.

So if we don't get the call for surgery before next Monday she'll have a fitting appointment for her new hearing device - and then it'll be game on for speech development and we can see what she's really capable of. Things are getting exciting!

And meanwhile we try not to think too much about the heart. She knows and understands and doesn't want to talk about it.

Last week was the kindergarten AGM, where all the new parents arrive and vote on the next year's committee. She was reacquainted with the educators and it was lovely to be talking with them about her needs for next year. It's all really becoming real. She's been home with me for so long and it's been just us for so much of it, it's been hard to imagine life beyond this year, but it's starting to take shape. Today I booked two appointments for next year. Need a new diary!

Many things going on right now, and I can't wait til Christmas because I am living under the delusion that things will settle down by then. (As if!)


Wednesday, 26 October 2016

Forgot to touch wood!

Hey all,
A month or two ago I realised that for the first time in Jacinta's life she'd managed to clock up twelve straight months out of hospital. That's saying something when you're approaching 4 years of age!

Now, I'm not your throw-salt-over-your-shoulder, don't-step-on-a-crack-while-walking-under-a-black-ladder-on-Friday-the-thirteenth kind of person but as I say, I should have touched wood - but I forgot, coz I never do.

I actually thought I was going to be telling another knock knock joke - you remember the one where it's Luke - Luke Aemia, since Jacinta has been rather more tired lately and there have been some petechiae and a nose that wouldn't stop bleeding, but on the very same afternoon as I was calling the Oncologist to find out the blood results, the Cardiologist was trying to call me to tell me Jacinta needs another round of heart surgery.

The upshot is, bloods are nothing to worry about, but the membrane growing across her left ventricular outflow tract is likely to cause a problem if it's left there, so they want to take it out.
Should be a short procedure, but with all the scar tissue it'll take some time like it did last time. They have to cut through very carefully so they take....their.....time. Not much time on bypass though, which is good.

And because things are quiet at the moment, they want to do it in November - which is a couple of weeks away!!

Suddenly we've gone from no hospital on the horizon and everything mostly normal (bar the tiredness etc) to a pre-admission appointment in a couple of weeks and surgery any time after that. We've never had such a short lead time, but I'm grateful for it. Hanging, waiting on tenterhooks for a year is something I'd rather not repeat. I like to write things in pen!

So I'll update you as we need to and as it happens. See you in a couple of weeks!

Wednesday, 5 October 2016

Houdini

Hi all, yesterday I realised something and I just wanted to share.

For a couple of weeks now, every time we go somewhere, I'd look back and see Jacinta with her arms out of her seatbelt. I'd tell her to put her arms back in, and she would, then she'd get a thumbs up and we'd be on our way again. This was not unchartered territory since each of my daughters had tried it on for a bit and then given up. After a little while instead of her stopping it, she started refusing to put her arms back in, so I'd go round and do it for her as I had already said I would if she didn't comply.
Then it got so as her arms would be back out again as soon as I'd returned to my seat and she was trying to unclick the whole thing.

I decided I'd need to go out and find a strap to connect the two shoulder straps - which we seem to call a Houdini strap. (In this part of the world we have two shoulder straps connected to another strap at the crotch.) But I remembered something that I'd noticed recently and not had the chance to correct and thought it might make it harder to get out.

I'd noticed on clicking her in that she had recently grown beyond the height of her shoulder straps. There's usually no mucking around where the car's concerned, either we're getting straight in or straight out, so spending 5-10 minutes adjusting the straps hadn't crossed my mind at the key moment.

I moved the straps to the next slot. The next time she was in the car I looked back and she was staying put, not even trying to get out. Every ride since her straps have remained in place. I asked her if the straps were hurting her before. She said 'yes'. Awesome.

Now I'd be lying if I didn't feel a little silly saying that after two previous children I only just worked out that it might be the problem.

Mother of the Year! Big clap for me! Better late than never....

So be aware! Shift those shoulder straps! (I'm sure most of you are right on it anyway.)



Monday, 3 October 2016

October just turned up - and it brought friends!

Well, you know me and Trisomy 21 awareness - lackadaisical bordering on cynically negligent. I was going to let this one go through to the keeper, having blogged at least twice this financial year....

But then things happened. They started a review of Medicare and someone suggested putting non-invasive prenatal screening (NIPS) for chromosome differences on the schedule, Sally Phillips (the actress we all know as 'Shazza who says f*ck a lot' from Bridget Jones' Diary and from the classic Australian comedy "Boytown" - I don't watch Miranda but apparently she's in that too) made a documentary about Down Syndrome and dared to give it to a UK TV station for broadcast next week, and the ABC ran an episode of Australian Story about a young adult couple with Trisomy 21 who want marriage and babies.

The T21 internet has pretty much broken. Seriously, I can't keep track of all the Facebook posts, threads, comments and which groups they're all in. I've been added to two more (very cool) groups this week!

And why? October is Trisomy 21 (OK, Down Syndrome) Awareness Month. And it's on for young and old.

And what gets my goat the most? It's not the parents of the adults who want marriage and babies, because frankly that's their business and I have the same aspirations as they started with and my child is all of 3 going on 20, so when I get my crystal ball I'm entitled to a public opinion.

It's also not so much that someone wants to add the NIPS test to the Medical schedule. This is a useful tool for those who are informed. The issue is that VERY FEW PEOPLE ARE ACTUALLY INFORMED. More on that later.

What really gets my goat is the reaction Sally Phillips' documentary (which hasn't even aired yet) has received from the British press so far. All of a sudden she's being labelled 'unhelpful' in an article entitled

Sally Phillips’s film on Down’s is ‘unhelpful’ for families, warns antenatal specialist.



Now Jane Fisher is from a group called Antenatal Results and Choices. This group is buddies with several manufacturers of the NIPS tests and has been accused of being anything but supportive of at least one person who wasn't keen to terminate her pregnancy. Her job is not to help people through their pregnancies to their natural conclusion.

She claims that it is unhelpful to make a parent's decision more complicated, when deciding whether their foetus is going to live or die. More complicated?? A life or death decision should be less complicated?? Are we a little production line, where a parent comes in after a test, is told the right thing to do and coerced into doing it, therefore making it easier on them somehow?  Who decided that was the ethical thing to do?

Next she claims that it risks offering the suggestion to those who have terminated that they have made the wrong decision. Now please don't think I am meaning to be at all callous about this, because I feel absolute heartbreak for those people. I do sometimes wonder when my little girl runs around charming the pants off people whether or not there are those around who have terminated a pregnancy and how that makes them feel. Maybe they look at her and assume it won't be fun and games forever, or maybe they feel a guilt they find hard to live with. I don't know.

But that is NOT our responsibility.

That is their responsibility. Sometimes we make bad decisions and we then have to live with those decisions - unless we were born in the 90s or later, in which case our parents will bail us out or we'll blame the establishment. (OK, sorry for the millennial-bashing! Bad girl! Hand-slap delivered.)

 Why must we continually tiptoe around people who made bad decisions and are not taking responsibility for them??!!

Sally Phillips is highlighting an issue which affects expectant parents all over the Western world. The medical establishment seems to have the idea that they should inform parents of all the risks in everything and downplay the highlights to avoid giving false hope, presumably to avoid being sued.

But this has gone too far, to the point where my husband was berated by a doctor well after Jacinta was born (this was a routine GP visit for his own health) for not terminating the pregnancy. This served absolutely no purpose other than allowing the doctor to voice his opinion and showed no agenda other than eugenics. The logic was 'she has Trisomy 21, why wasn't she aborted?', which is discrimination at best and eugenics if we're really confronting it. No-one was going to sue him for saying absolutely nothing and carrying on with his job of diagnosing and treating my husband.

It's no news that parents all over Australia are given a possible, probable or confirmed diagnosis and then pressured to terminate - often repeatedly and sometimes even very late into the pregnancy.
Parents trust their doctors, assume they would be told if there was more information to be had and consider the information they have been given very carefully and consulting their conscience.

The information given to expectant parents is often poor, outdated and negatively biased. It leads to very high termination percentages, at a time when Trisomy 21 has never looked so good. It is the aim of many parents both in the UK and Australia to get the right, unbiased information out there. I still say that a google of regretful parents with children with T21 brings up nothing but regret for termination and one newspaper article that I hope the child of that mother never reads.

Yet the advice given to pregnant parents is that the regret is on the keeping side and the relief is on the termination side. That's not how it looks on the internet. I know it's not how it looks on the keeping side. I don't know anyone who has terminated and commented about it, but the one comment I've seen was a character in Eddie Perfect's play The Beast, agonising over a decision made to terminate in the past.

 I chose not to have genetic testing with any of my children. I wouldn't kill a puppy so I wouldn't kill a foetus. That's my choice. I didn't want to have an agonising wait while I sat on a possible diagnosis for 6 months. Fear of the unknown is bad enough when you have nothing to worry about in pregnancy, let alone when you do. I was lucky to have a heads up a couple of weeks before, not enough to seriously worry about it but enough not to be completely shocked when Jacinta was born.

If I ever had another baby, I would probably choose the NIPS test. I feel informed enough now that the test would be useful information about what to expect, rather than worrying me about a big unknown.

I am informed. I would choose to give birth to another child with Trisomy 21 if another was conceived. This is not a religious decision, it's a rational decision based on my experience so far.
If up to 90% of parents are choosing to terminate I can only assume either that they are extremely selfish (preferring to kill a life form rather than be inconvenienced, as you would a fly) or grossly misinformed. I am pretty sure (in most cases) that it's the latter.

If these NIPS are to become the norm, then so must become being properly informed before you take the test - or at least upon a positive result. Then parents can be empowered, not kept in the dark. They can know that they will be terminating a life that chances are will be much more like your average Joe than not. It might not be as easy and there might be a few more sacrifices, but don't they say that life without pain has no meaning?

And we can't keep tiptoeing around those who have already chosen. We can make those advising them accountable and more responsible in the future for those who receive a diagnosis.

Personally I would love to see a positive diagnosis delivered by a person with Trisomy 21 who knows the stats and can candidly answer questions about their life. The world probably isn't ready for this, but I know there are people out there who are up to the task. Let them speak for themselves.

And let the parents fully understand, and make a real choice, one they can live with.





Tuesday, 13 September 2016

Milestones...

Oh, how I love milestones. The things that you watch for impatiently with your first, then cynically neglect with your second (because it really doesn't matter WHEN they happen) and finally pray they'll happen sooner than later with your less neurotypical third (or insert appropriate number) child.

It is a truth universally acknowledged amongst the parents of the developmentally challenged that the harder won, the sweeter the victory and one of the things I love best about having so many T21 families on my Facebook feed is you get to hear about so many hard fought battles and hard won milestones.

This week my middlest lost her first tooth - which the tooth fairy kind of forgot to leave money out for overnight because someone may or may not have thrown out the tooth without realising it....(no matter, crisis averted with some quick thinking and a handy diversion).

This week also Jacinta had a milestone of her own. She was invited to her first party!!! It was a gluten-fest, let's be honest, though she didn't have much. It was just so exciting to have a party invitation. She also got tired out faster than the other kids - except one, who cried the whole party through.

It's always lovely when your child receives his or her first party invitation. It's such a lovely validation of their membership in society. With T21 though, there are children whose parents notice they are being excluded and they understandably vent on Facebook. I don't know if it's possible not to let those posts affect your optimism about your child's social prospects. I confess that for all my best intentions about her having as close to a normal life as possible, I have come to realise in life that there are certain things you can't force children to do. One is do a wee. Another is to like somebody.

A child with his own agenda will wee where and when he deems appropriate (for many that will be whatever gets him the usual bribe). A child with or without an agenda will like whomever he chooses for whatever reason he sees fit. We can't make people like our children. The best we can do is try to bring our children up to be likeable people. Thankfully Jacinta seems to have this sorted. Of about 10 children in this particular group, she was one of 4 who made the invitation list.  Yay!

It's hard not to puff your chest out a little bit when your "drain on society" "burden to others" child is welcomed with open arms. It's also hard to think about campaigning for acceptance and inclusion when amongst this group it is simply assumed.  It's hard not to feel vindicated about thinking we're setting the bar too low on that one.

It was hilarious when I looked around towards the end wondering (as I do from time to time) how she appeared in that setting amongst the other children. The most noticeable difference between her and the other children was racial - she and I were the only caucasians in the room. It felt a little racist to be pointing it out later to others - which makes me wonder, is it not ok to point out racial difference but apparently ok to point out chromosomal difference - or is it just rude to point, like my mother always said?

Food for thought - gluten free!

Saturday, 9 July 2016

Let's talk about the R word. (Warning: frequent use of the R word)

So I'd like to talk about the R word.

There are so many angles to this conversation it's hard to know where to start.

Many of my Australian readers will have noticed that a couple of Australian tennis players dropped the 'R' bomb during the week.  This gained extra attention because a friend of mine, Kat - mum to Parker of the Bonds Baby Search (which he won) and writer of many articles and at least one blog (parkermyles.com), decided that was enough and called them out on it via a video rant she posted on her blog's Facebook page - https://www.facebook.com/ParkersPlaceAustralia/ . This went viral and a few media programs picked it up.

In case you've missed it, there is a strong feeling amongst many parents of children with Trisomy 21 that the word 'retard', or 'retarded' has lost its usefulness and is now just derogatory and should be banned. Of course, there are opinions in the T21 community right along the spectrum from not being bothered about it to being all for the banishment of the word completely, in all contexts (including medical terminology).

So from where does this word originate?
The Oxford Dictionary says it's from 15th Century French retarder, from Latin retardare, from re- 'back' + tardus 'slow'. (Its brother 'ritard' has long been used in classical music with the same connotation, slowing down.)
The Oxford has a verb definition: Delay or hold back in terms of progress or development:
'his progress was retarded by his limp'. 
This is how you hear the word used in a medical context. You hear 'growth retardation' quite regularly. As a verb it describes slowed growth. It's benign in its intent. It is describing abnormal growth in neither a positive or negative way. It's the opposite to acceleration. No-one's making fun of anyone or being rude when they use it. This is a verb.

Somewhere along the line, this verb turned into a noun, and that's where the trouble started.

I've stolen the following from Wikipedia [Retard (pejorative)]:

Retard when used as a noun is a pejorative word used to refer to people with mental disabilities.[1] The word retard was widely accepted in the late-1900s to refer to people with mental disabilities; however it is now more commonly used as an insult. The word has gained notoriety for causing a growing number of mentally disabled people to feel unfairly stereotyped.[2]

Etymology

The word retard dates as far back as 1426. It stems from the Latin verb, retardare, meaning to hinder or make slow. The English adopted the word and used it as similar meaning, slow and delayed. The first time the word “retard” was printed in American newspapers was in 1704. At this time, it was used in a way to describe the slowing down or the diminishing of something. The first time that any form of retard was used to describe mentally disabled people was during the 1960s when "there was a push among disability advocates to use the label mental retardation."[3] This push from advocates was because older terms for the mentally disabled, like moron, imbecile, feeble minded and idiot, had developed negative meanings.[3] Retard was not used to refer to mentally disabled people until 1985. It was widely accepted to refer to people who are mentally disabled as mentally retarded, or as a retard. From there, it turned quickly into a pejorative term, as people began to use it interchangeably with words like stupid, or idiot. Many communities, particularly in North America, regard the word as no longer socially acceptable. The fact that it is still commonly used has led to a continuing debate. A common replacement is the phrase “the r-word.”[4]

Modern use

Retard has transitioned from an impartial term to one that is negatively loaded. For this reason, it is now widely considered degrading even when used in its original context.[5]
Most commonly when retard is being used in its pejorative form, it is not being directed at people with mental disabilities. Instead, people use retard when they want to call their friend stupid, an idiot, or a loser.[6] This use of the word retard is the part of what the campaigners are trying to attack. The campaigners are trying to make everyone understand that retard is a derogatory term no matter the context.[7]
*****

So we are left with a bit of a problem as you can see in the last paragraph. People growing up since 1985 have adopted a noun usage of the word (I rarely hear it used in those over 40). It's like the boys at school used to call people mongoloids - and I'm pretty sure they had no idea what it even meant, I certainly didn't - they just wanted to be mean to the girls. 
It's generally the teens and young adults I hear using this word as a noun, and these are usually very kind people who are using it to describe themselves doing something they consider to be less than their usual example of intellectual splendour. Brain fart moments, etc. In that sense, calling an action of theirs retarded actually is descriptive of a slowing in themselves, so is almost linguistically correct - except for how the word got to there in the first place. They might also call a situation retarded, but not another person or their actions. This would be an adjective use.

Less kind individuals call their friends retarded or retards kind of affectionately, but I don't have any friends who would say that to me. I don't hang out with people who point out my bad points. 

Even less kind individuals would use the word as an insult. This is the kind of person you'd avoid on the street or get into a scuffle with. They're looking for a fight. They would also call you a dickhead, a fuckwit, an arsehole, a cunt, ad libitum, with all the spittle and forceful hate that accompanies such vitriol. We don't have to take any of this onboard, but it's the kind of language that just doesn't belong anywhere but has somehow crept into what is considered normal usage in many circles - Flinders Lane on a Saturday night for instance. Also, those insults also have some degree of respect attached to them. Calling someone a retard implies they deserve no respect. 

The telling thing you read above is that the adoption of this word for intellectual disability has come about because the previous words used (moron, imbecile, feeble minded and idiot) had developed negative meanings. I'm guessing that the words used before those ones were replaced because they too had developed negative meanings and from that I extrapolate that if we go on a campaign to banish the word retard simply because it has a negative meaning, it won't remove the negative intent. The negative intent is what makes the word so hateful and ugly. 

I consider us very lucky. Jacinta is surrounded by people who love her and think she's cute, beautiful and awesome. This includes her extended family, but also includes those who see her at school, at kinder, our friends, the Facebook community, our church, the staff at Aldi, anyone we meet in the street, those who watch her passing as she carries on with life - everyone. She is surrounded. By people who think she's cute, beautiful and awesome. 

While every small child with Trisomy 21 is individual, you would expect that every small child whether they have T21 or not would be considered cute and beautiful purely by virtue of the fact that they are little and cute and doing cute little things. No-one ever expects their toddler to be the subject of vitriol and degrading remarks, yet for too many parents whose children have T21 this is exactly what they encounter when out and about, at the shops, at the Doctor's surgery, going about their business. These children are called 'retard' or 'retarded' and the people saying it mean it with its full negative connotation. Some of these people mean it in a hateful way, some in a demeaning, degrading and disrespectful way. 

You can imagine - or perhaps you can't, but you can try - how it could be for a parent who loves their little child with all their heart and considers them the centre of their universe to hear someone saying horrible things to and about their child who is not only far too small to defend him/herself, but maybe even too young to fully grasp the intent of the words. 

Parents do at times come across nasty people who imply subtly that perhaps their child is doing the wrong thing to the person's own, or that a parent is doing the wrong thing in raising the child. This is an unfortunate part of hanging out with humans. If there's an infraction, call it, resolve it and carry on, upfront and frankly. When a child has been doing absolutely nothing wrong in the first place and you start calling them names, that is bullying. The bullying of a child impacts on the parent, absolutely. The words of torment become words that trigger all kinds of upset and anger, particularly if the anger is directed at some nameless stranger who walked passed, shot out the insult and slunk away before the shocked parent could think of anything to say in retort. 

Unfortunately it doesn't end when a child gets old enough to defend him/herself.  Even the best of us struggle to find the killer comeback when a bully decides to have a go at us - and as we all know, bullies don't grow out of it, they grow up and become adult bullies if someone doesn't do something about it. 

I'm betting that all around the country there are intellectually impaired children, teens and adults (whose thought processes are a little like many neurotypical adults who can't function in the morning without coffee and are at that point also intellectually impaired) who are still seething over the incident or incidents where they were viciously insulted and are wishing they had only managed to come up with the awesome comeback they have now constructed.  I'm fairly sure they probably replay this moment in their heads from time to time, in a version where they say it and walk away leaving the bully stunned in their wake. As do we all. 

So if you call yourself mentally retarded in the morning before a coffee, that is a correct use of the term - except if you're in the US you should be calling yourself intellectually disabled because of legislation passed in 2010 called Rosa's Law which removed the term 'mentally retarded' from all federal health, education and labour policy (and the implication is that it is now replaced across the board). 

But let's get to the absolute crux of the problem, to which I alluded earlier. 
One day intellectually disabled will be a stigmatised term and a noun will be derived from it which describes those with slower thought processes (belonging to a certain group with distinct medical diagnoses). We as humans want to come up with a quick and easy descriptive term - particularly in Australia we shorten everything. It's like calling people with T21 'Downsies' - it's quick and easy, and I'm sure very few people who use/d that term mean/t it in a derogative way. 

We have people who are using this word almost quite appropriately to describe their own intellectually slow behaviour, and it is with good humour and benign intent. From what I see, this is the most common usage of the word and it is very difficult to effectively explain to people who are using a word like they would any other - be it 'silly', 'sugar' or 'pumpernickel' why exactly they're having a perfectly useful word removed from their vocabulary willy nilly. They can't see that they're insulting anyone but themselves and they feel they should be allowed to do that. 

Still, there is language that is benign and language that is offensive. Some have a higher threshold than others for offensive language - and I find it amusing sometimes to witness a person with a high threshold for offensive language suddenly be shocked to hear a particular word used around them.  Different words are offensive for different people. As a general rule, if you wouldn't say it to your grandmother, or in a job interview, then just don't say it. 

Also, looking at many words that are considered offensive nowadays, if you trace them to their roots they were just working definitions for things that needed a word. I can think of an insulting name for someone whose actions are not up to your standard which used to be the term for someone born out of wedlock - regardless of their character. If you look at the history of the C word, it was not considered taboo in the middle ages, but gained a vulgar use in the last couple of hundred years. 500 years ago people were dropping the C bomb without batting an eyelid. The word 'gay' was around for 500 years before it took on any kind of negative connotation. Then it went from having a  promiscuous slant in the 1890s to having a homosexual slant in the 1920s, which definition has gone from being insulting to being a benign label for a group in society - almost full circle. 

Words change. Meanings change. The language is fluid. The R word will change. If it stays in use its meaning will change. If it drops out of use it will be replaced by another. So what do we do? 

We change attitudes. 

I have said before that I don't go for inclusion and acceptance. This is exactly why. Inclusion and acceptance lead to insults behind closed doors when they're not accepting and including. It implies that there is effort required in letting people from certain minorities live happily and exercise their human rights. 

What I shoot for is respect and understanding. When you respect someone, you don't have a nasty stereotype for them. When you understand them you can see their viewpoint and you have no more reason to exclude them than the person on the other side of you. 

We need to educate, educate, educate the people of the world so they can understand the lives and abilities of those whose thought processes - or even physical processes - may be a little slower than the arbitrary cutoff for 'normal'. 

We need to show the people of the world how many things the above human beings actually can achieve. I know Stella Young didn't want a medal for getting up in the morning, but when I look at what it takes to get up in the morning and out of the house, I respect those with physical or intellectual disabilities for showing up, especially when so many typically developed people would consider it not worth the effort and stay home on the couch. 

We also need to clean up the language we're hearing around us. Where have manners gone? Where did society change the rules on acceptable language? When I was a child you would never have heard the kind of swearing on TV or in movies that you hear these days - not to mention recorded music, and the content of the lyrics. I have to keep the radio on golden oldies stations so I can be sure the music and discussion is appropriate for primary age children. 

Then there are the billboards up everywhere. It's impossible to shield my daughters from sexualised images of women when there are women in lingerie, slicked with oil and sprayed with water, skin to skin with some guy - promoting sunscreen, or shoes, or undies, on the way to school! 

Culture has slipped very fast into a zone where standards have gone way down. This is the environment our young women and men are being raised into. Can we really expect them to magically imbue some class or respect when they are living daily in an environment where these are not valued and barely shown? 

If we want to get rid of the R word, it's a bigger problem, as Kat said. 

It's a bigger problem than just a word. 

It's about respect, it's about understanding. 

It's about knowing who actually inhabits your city or your country. It's about knowing more than just your own little suburb or school or workplace or church group. 

It's about being interested, and learning about the world you live in - from the actual people themselves, not from some biased media source. 

It's about standing up for class and standards and creating a world where all people are respected, and respectful art and advertising are supported.

This issue is deeper than a word. It's ingrained in our culture. We as a country can change it for the first time by deciding one by one to do these things. 

For centuries, maybe millennia, there has been vilification and exclusion of those who are a bit more unique that the rest. This once used to be based on survival. Now a man can survive even if he's lying in a coma for a decade. We have moved on and our attitudes can change. 

We just need someone to start. 














Sunday, 22 May 2016

Surprisingly normal.

I've been neglecting you all, I know!

Why?

I've been busy, and busy with things other than Jacinta!

It's funny, the moment she was first potentially diagnosed, a few hours after birth, I wrote off the next five years as years of intense work and no fun.

I'm not sure what I thought, whether I thought that she would be disabled and hard work and magically not hard when she turned 5 or 6 and went to school, or if I just didn't see the fun in the equation, or was just shell-shocked and not thinking clearly.

The thing is though, I spent the first 2.5-3 years of her life taking care of a sick child. There were moments when she was doing well, like the time we visited the paediatrician at about 6 months and she said 'she's just a bonny baby' with a tone of surprise at how normally she was presenting.

There were no decent opportunities to get moving with any intensive therapies, and to be honest she's just kept doing so well considering her handicaps (leukaemia, heart, fluid in the ears) that I haven't felt the urgency to do lots of intensive therapy.

We have two other daughters, my eldest and my middlest, who were 2yo and almost 5yo when she was born. Doing my eldest's 5yo birthday party with 19 attendant princesses and one prince while Jacinta was in intensive care was quite a business! Got it done though, with help from some kind family, friends and acquaintances.

These other daughters have spent the last several years existing with less attention from me, either because I physically wasn't there, stuck in hospital, or because I was constantly thinking of other things we needed to be doing. Then I got burnt out, starting late 2014 and it didn't go away for a whole year, so I decided it was time to address it. I quit everything and gave myself a break.

Still, this is a byproduct of having a sick child, which is partly due to the chromosomes, but could just as easily not be. I've got my wick back, but am determined not to burn at both ends, since we all know how that one goes. My husband is working interstate again, like a few years ago, so there are limits to what we can do but I can write things on the calendar in pen and actually made it, as planned, to visit my dear friend in another state for the weekend, no kids in tow.

There are still things happening which are fallout from the past three years' craziness. My eldest was a little slow in getting her backwards letters and numbers sorted, which was ok in Prep but is not cool in Grade 3. I've started working with my sister who is a behavioural optometrist who very kindly sees us once a week and give us exercises to do.

My middlest reported to me with what seemed to be a broken tooth. As a background, she's had some teeth issues before which I considered a close call, but she's been diligently brushing since that time last year and we weren't due back to see the dentist yet.

The broken tooth turned out to be a seriously decayed tooth, and it wasn't the only one. It turns out she's been pretending to brush and coming to me with toothpaste in her mouth and showing me her minty breath. Thank goodness she has the highest pain threshold of anyone I know and she's capable of sitting in a dentist's chair for an hour.

So I'm having to work with the good old soldier's maxim, 'no man gets left behind'.  This is a favourite with the Institutes, and is why the whole family usually gets involved with an Institutes program.  Up until recently my eldest and middlest were getting left behind, so I've put the focus on them, to help us all get to square one, and I'm still working on my own health and wellbeing so that I am in a state to be useful to them all, especially since my husband's health is still not 100% brilliant.

And though these types of issues aren't super normal in your average family, they're not out of the ordinary in an oncology family or a Heartkid family.

I was looking back recently, when a person I know told us that they were expecting a child with Trisomy 21. I was looking at what helpful info I could give them, since they were still processing the news. What struck me when I thought about it, was that there weren't a whole bunch of tips and tricks I could pass on, because the things I know which are particular to Jacinta are things to do with hospitals and medical personnel - and Jacinta's medical history, while not unique, is not the norm for Trisomy 21. I know four children in Australia with a heart condition and leukaemia in remission and Trisomy 21. There would probably be a few more, but these are among thousands of children in Australia with Trisomy 21.

The thing that struck me most, above all, was that Jacinta is constantly surprising me with how normal, average and unexciting/unproblematic she is. (Though of course very charming, funny, clever and obstinate.)

Right now as I type she's mucking around in the lounge room with her sisters. If she gets bored she'll probably go outside and find something to do in the garden - ride in the red & yellow car or attempt to ride one of the tricycles which she can now reach with her size 1 legs. The things she's doing are not necessarily all normal for a three year-old, but they are completely appropriate for the level she's at. She's sometimes a mix of attitudes and abilities, so that makes life interesting, but it's so similar in many ways to bringing up individual children who differ in ability naturally, that it feels quite normal.

I'm not sure I'd see it this way if she was my only child being compared to other children, or my second being compared to my first. Having brought up two completely different children previously, the younger of which has significantly neater handwriting than her older sister, my perspective on ability and the spectrum of 'normal' was already reasonably expansive.

Our usual weekday often consists of dropping sisters to school, coming home, having a snack and watching a bit of Playschool. She'll get into an argument with me about wanting to use my iPhone. I'll say 'no' if I don't need a convenient distraction, and she'll stamp her foot and walk off with her arms folded. She tries to get into the pantry cupboard, she tells me when she's thirsty. She's learning to say 'wee wee' at the appropriate times and she's too grown up for the potty; she'll sit on the toilet, thank you very much.

She DOES NOT need help. If you dare to accidentally help her with something, Oh my Lordy, the dummy will be spat and whatever you did will be reversed so that she can do it herself.

All the 'look at what my child did' posts by parents on social media relate to Jacinta as they did with my older children.

 Ah, I was wrong; she didn't go outside. She started making prank calls to Daddy, who's interstate, with her sisters.

Jacinta looooves talking on the phone. I pretty much can't carry on a conversation in her presence because she'll be constantly requesting in progressively less polite ways to speak to the person on the other end - no matter who they are. She's even spoken to someone at 000 I believe, once or twice....

There's an awful lot of normal going on in our lives, now that her health issues are (touch wood) under control.

And I promise I'm not leaving out the less good bits. This is life at the moment. We're living the life of a 30-ish month-old, which is about right, considering she's had time off sick. And even if she was behind purely because of the chromosomes, that wouldn't matter, because every single child is building abilities on top of previously attained abilities. That is exactly what she's doing.

If your child is lagging well behind most others their age on a particular ability, you isolate the reason, remedy if possible and let them carry on building up that ability to a level that can sustain them long term. That's how it works with all kids, the ones with fluid in the ears, the ones that need glasses, the ones with sensory issues, the ones on the autism spectrum, the ones with cerebral palsy or who have had cancer treatment....the list goes on. That's how it is with Jacinta.

So I'm back doing NAET to try to reduce the fluid in the ears. The speech has come along since she's started the NAET and since she started dance classes. It's interesting, I use her interaction at dance class as a barometer for how well she's hearing. It's definitely improved since her hearing was checked last time. This is a busy morning; dance class and NAET appointment. That's the few hours a week I'm currently spending, and it's no much more than your average bored 3 year-old whose sisters are at school and is trying to fill in the days.

I plan to get her doing swimming. That'll be another hour a week. It really isn't a drain. The swimming times are around school pickup which might mean her sisters go to after school care - they'll be DEVASTATED. (Can you detect the sarcasm? They've been begging to go to after school care!)

I'm trying to get overwhelmed and upset about Jacinta's condition, and I just can't justify it!!

I know, I have no crystal ball and I cannot guarantee that her abilities won't plateau permanently next week, but for now, she's doing just fine. Anything else I can do for her - and I do plan to do more for her, particularly reading once her hearing is ok - is a bonus.

So, when sitting in my wheelchair at her bedside when she was one hour old, I never ever thought I'd be comfortable to let her be and develop as she might. I expected more trouble. How lovely that I was so wrong.

Sunday, 20 March 2016

21st of Trisomy 2016

Hello All,

It's the 21st of Trisomy again!

Now, I'll be frank. There is one message I really want to get through to everyone.

Please, can we recognise that it is not the words that are the problem, it is the intention behind them.

You can call someone whatever words you like; it's the intention behind them that gives them their ultimate meaning and effect.

What's the difference between calling someone a retard and calling them cognitively impaired? One is said perhaps with antagonism, perhaps endearment, perhaps love, perhaps frustration. One is said with perhaps respect, perhaps disdain, perhaps love, perhaps frustration.

Several times over the past few years I've had conversations with my eldest and my middlest about the good old 'sticks and stones will break my bones but names will never hurt me' maxim. In primary school, I figure it's worth addressing this and building up resilience and perspective, since social media fast approaches and we'd best be prepared as well as we can be.

If someone's talking about you, especially if they don't know that you can hear them, or they don't realise they're talking about you since they're talking about a group that they don't realise you belong to; they might say all sorts of really insulting, poorly thought-out and hateful things. It can be very confronting to see what sorts of things can come out of the mouths of those you thought reasonable, intelligent and well-mannered.

With my children, they sometimes call each other certain things. Not so much names, but character traits. I have always had a hard and fast rule which is that they're only allowed to say 'you are' to someone if they're following it with a compliment because, if they're saying something negative, chances are that the person in front of them is not really e.g. lazy, mean, stupid etc, they're just having a moment.

Every now and then though, someone will slip up and one or the other will come running in and say, "she said I was a ....." and be very upset about it.  My response is always, "do you agree with that?" and they'll always say that, no, they don't. My next question is, "what if I called you a banana, would you be upset about that?" and they always laugh at that idea. I start thinking up ridiculous things, like an armchair or a quiche or a balloon etc and this shows them the idea that these things really are just words and the power they have comes from whether or not you agree with them yourself.

They usually try saying, "what if I said YOU were stupid?", and my reply is always, "It wouldn't bother me, because I'm not stupid and I know I'm not stupid", and this is the absolute truth.

So if someone was to call Jacinta a retard, I'm afraid we'd be in a 'takes one to know one' scenario.
For the record, no-one ever has. If anyone ever said retarded, well medically, her gross motor was quite retarded and is catching up, her speech is also to some degree retarded. Her growth was retarded but she is now a clear size 3 at 3 years, so she's definitely caught up there. If you call Jacinta a retard, you might as well call her a banana or a weather kite, and I'll be teaching her that, just like I do my other daughters.

Girls are called names. People perceived as weak are called names. You can either give the bullies a taste of their own medicine or rise above them and look down on them, pitying them for their simple-mindedness.

I've said before that I think aiming for acceptance and inclusion is setting the bar too low. I am not aiming for acceptance and inclusion for myself, because that implies that there's something wrong with me. I'm going for understanding and respect. If people don't understand and respect me, I have something to say about that, and if people aren't going to understand and respect Jacinta, her sisters and her friends, then I have even more to say about that, and I expect she will too.

Right now, she is fighting for understanding and respect in her own house. She is suffering from being a fairly non-verbal youngest sister, who is more likely to take the dolls and run off playing her own game with them than to take well-planned orders from her more sedate older sisters. She gets left out because of car seat logistics, having to go in Mum's car on her own when her sisters get to go in Dad's car. (There was a time when I couldn't leave her sight. The tables have turned, it seems!)

When this happens, the humpf begins, the hands go on the hips, the bottom lip comes up, the waterworks come on. She just wants to play, she wants to be part of the team. It's just that they don't get it and they don't respect her abilities yet. That will come. They're not discriminating against her chromosomes, they're discriminating against her 3ness. It's a little late in coming, my middlest had the same issue with my eldest when she was 1 or so, but I'm sure it will pass all the same, so long as she does gain the abilities she needs to gain their respect.

In our house, she's not just accepted, she's loved. She belongs. We understand the she is her own intelligent self and she's trying to work that body and break through the physical barriers to her expressing herself and her abilities. She is not just included, included though she is. (Excepting of course those choice sibling moments of frustration.)  She has the respect of every one of us when we think about what she's managed to endure and thrive beyond.  She has the respect of many people, both local friends and family, and around the world.

There are certain people in life that would never ever cop a 'retard' taunt, except perhaps in jest by their nearest and dearest. They command such respect that the idea is ridiculous.
So, first, let's go for respect.

Almost as a corollary, there are people around who will sling around inflammatory character judgements etc like they're going out of style and dish out  'bitch', 'wanker', 'nob', 'pretentious hipster', 'tryhard' etc. about people they see across the playground, at the footy, at school, at work, at church, at the bus stop etc etc add infinitum.

This behaviour is childish, it is at the root of every 'retard' you hear and when it goes unchecked, we start getting T-shirts with offensive slogans. We get these because we thought it was ok to deny respect and understanding to that guy over there, but think we have the right to insist upon it for our own child that someone else neither respects, nor understands.

So this cuts right down to the heart of Christian principles which, though many of us have moved away from the group, we were many of us raised by them and we know them in our hearts.
Love one another. You don't have to be all about Jesus to love one another. You don't have to be going to a church, or even know where one is, to see the guy on the corner as your brother. You don't have to even know the words to any prayers or any religious anythings at all to see any person alive anywhere and decide that that person is on your team.

If we're all on the same team, we start to see each other's characteristics as potential, not flaws. When you love someone you forgive them their faults and try to understand them and help them change. When you decide to love someone consciously, you do the same.

Just imagine if we all did it at the same time.

Wouldn't that be something?

So this March, perhaps, might we worry a little less about the terminology of hate, and focus instead on the practice of brotherly/sisterly love?






Thursday, 10 March 2016

Three!




Yep. Three. And don't we know it!


Actually, she does  know it and when she feels like it she says it too!

So where are we at now? 

You'll notice that cake has Aldi "Smarties" (you'll have to google Smarties) on it. It was a gluten free, dairy free cake, with a little dairy in the icing.....  We've not been super good on the special diet. In fact, to be honest, we've pretty much fallen off the wagon this summer.

Still, it's quite obvious that Jacinta is reacting to fructose. She loses some of each meal when she's been eating apple, pear, peach, wheat etc. Serious reflux. Very messy! We need to get back to Maria to try some NAET on that one. No big surprise there, it runs in the family.

Now, what else do we need to do NAET on - not the heart so much, apparently. She's finally off all her meds!! Yaaaay!! It seems the heart has settled down since last visit to the Cardiologist. The left leak has improved and the heart is the right size. Super cool. Being off meds un-complicates things a lot. 

Jacinta wearing the dress her sister got the day she was born.
(After having eaten something very tasty)
While I'm reorganising the toys in the hallway! 


The big supplements question mark is hanging over our heads. There are so many different suggestions on supplements. We know that she has some degree of MTHFR mutation, from me at the very least. This means no folinic acid for her. She needs the good stuff. So any specific T21 multivitamin (of which there are a couple) need to have that taken into account. Then there are the things you could take because they might help, and the things you could take to circumvent problems which might crop up in the future, such as Alzheimer's. There are lots of them. Then there are things like probiotics, or Juice Plus (or equivalent, if there is one) to boost immune function.
Some people take everything they can. My goal is to find the exact right combination of the fewest things to achieve everything we feel we need to.

In terms of development, Jacinta's speech is coming along. She can say lots of things, especially mimicking me, which is obviously a part of speech development. She said 'cheese' in the supermarket today. She says 'shoes' spontaneously, because she is a girl. She also says 'nooooo' when I ask if she's tired for bed, because she's three. She runs away if I suggest it's bedtime, because she's three. She runs away if we're in the playground at school and I'm not looking. She runs away if I leave her outside the house without a locked gate. (For the record, I'm not making a habit of leaving her outside the house without a locked gate, but I did monitor her progress as she made her way in from the car behind me - our car is parked around behind our house - and she did make straight for the driveway and head for the street.) I guess when you've waited the better part of three years to master walking, you want to take the ball and run with it. 

And sometimes you want to ride in the pram.


This year I've taken my own advice and slowed down. I'm gaining back my energy bit by bit and I'm getting us off the gluten and dairy and really am going to tackle the sugar, salt etc and be making as much as possible from scratch. Not just for her, but for my energy, my husband's energy and my other children's health as well. It's time to start nourishing ourselves at every opportunity, rather than filling up here and there on rubbish. Cake etc is all very nice, but doesn't make for forward progress, and they do say that if you're not moving forwards, you're moving backwards. 

The one complication this year is that Jacinta's immunity may be impaired. Her lymphocytes (one type of white cell which impacts your ability to fight infection) haven't recovered properly since the chemo. They were heading slowly up and now they've headed down again. There's a chance that her partially removed thymus may be partially responsible, or it could just be something funny going on. Next visit we're checking them out more fully. If it's an immune problem they'll be suggesting she have immunoglobulins supplemented in winter time. I haven't even started checking to see how the supplementation of immunoglobulins will affect a person's immune function over time. Might worry about that when we come to it. 

The biggest change for this year is that our middlest is now at school. Being in the Southern Hemisphere, of course, the school year starts at the beginning of the year. This means that once again J and I have the pleasure of each other's company and each other's undivided attention. 
When people I was talking to about our middlest's impending school entrance realised that it would mean one at home, they would start to say 'so Jacinta will be getting some alone time with Mummy...' and I'm afraid I failed as a mother every time. "Coz we've never had any of that!" was usually my reply. If there's one person who needs alone time with Mummy it's our middlest, who is not only the middle one, but had me removed while she was three so she missed those little hours while your sibling is asleep. Following close behind is our eldest, who's entering a world where things are embarrassing and you get picked on for being any different from the majority. (AKA being yourself.) 
Thankfully she has some solid friends to help her through.

The fallout from the past few years' health issues continues.

So this year is a catchup year. Make up lost ground. Get my health in order. Get the other sisters' health in order. I've cancelled all extra-curricular activities so I can get some sleep. I even took a Facebook holiday because I was feeling too obliged by commitments on there. I keep a check on things every day or two, but I'm pretty much not getting into any discussions etc. It's a drain on my resources, and I realised that if my social life exists online, Jacinta doesn't have one.

I've started (well, am attempting to start really, we've had a few false starts...) a weekly play group with a couple of other mums with similar interests. She's started a 2yo dance play class. These will be her educational peers. She's keeping up, in her own way. We'll be looking at swimming lessons for Jacinta and we're finally booked in for more NAET next week.

Looking at J, her speech is improving, and she's clever and hilarious. She understands a lot, but can't necessarily say it. There's a fair bit of yelling at the moment! We also finally had her hearing checked. She had a cold at the time and her ears were completely filled with fluid. They did the fluid check and the graph should have been a mountain. It was a calm ocean. Blocked. Good news is no permanent damage. It's all middle ear. We're going back in 3 months and we'll NAET and be dairy-free and try to get to the osteopath again before that. If we're still fluidy we'll be referred to an ENT for potential grommets. I'm not super keen on grommets. Her Dad had many many many operations to insert and fix grommets. I think more than 10.

She's basically  presenting as slightly drunk at the moment. I'm hoping to sober her up by the end of the year. We haven't given up on the Institutes either! There are elements of the Institutes program in everything we do, but we're not officially working with them, though I'd like to be. I think it's a bite the bullet scenario. Might be a challenge now that Dad is working Mon-Fri a two-hour flight away.
We'll see!

And she's conquered her fear of the slide!
Everyone look at me!