A bit of Facebook banter

Listening to Nirvana loudly on headphones, it has been that kind of day! I had a long session with some irate Colombian teachers, then had a tense Facebook interchange with someone on the merits or otherwise of Down syndrome children.

Tomorrow is World Down(‘s) Syndrome Day so there is a lot bouncing around Facebook etc about DS… which is lucky ‘cos otherwise I would have had no idea that that it was World Down(‘s) Syndrome Day. Having my finger on the pulse might possibly not be what my nearest and dearest would point to as my strongest one of my points.

Something that came to my attention was this video:

Dear Future Mom

I posted it on Facebook and then other people posted it on and a friend of a friend picked up on it. I am going to paste in our exchanges below. As it was something that I had posted, I felt justified in speaking out. But it was certainly not the only comment of this kind that I saw. I subscribe to a channel called Upworthy and it is what it says it is, very worthy but I like it. Upworthy also posted the video above and got all sorts of comments in the same vein. Ss did the YouTube channel where it originally appeared. It does seem a shame that there seems to be so much anger out there. A lot of comments were just purely stupid and nasty but a lot of people were getting into the pro-life/pro-choice argument which I don’t think that the existence of DS people should necessarily be about.

We – Fo, Otto, AJ and I live in an incredibly privileged situation. The not-aborting choice was slightly forced upon us but we were in a position where we thought we could probably cope with a DS child. We have had a bit more thrown at us than possibly the script suggested but thanks to a happy combination of circumstances: a solid relationship and family; being able to draw on incredible support from extended family and friends; money (not enough/loads, depending on points of view); a lovely home; an education that allows us to make the most of the state support that needs to be pressed to deliver; the NHS; and most importantly the DS person in question being the most preternaturally jolly person alive, we have survived where others would have struggled.

I wouldn’t change AJ for the world but that does not mean that I am an evangelist for having Down Syndrome children. The kids in the video are, as many people have pointed out, at the top end of a spectrum, not that there is a recognised spectrum.

I am quite proud that I managed to talk this guy down from a pretty angry position, well I say I talked him down, it was the AJ pic that did it. I have tried to anonymise this conversation but as it was on Facebook, I feel it is ok to share in redacted form, if it is ok with the Guardian and Edward Snowden, it is probably ok for me and my interlocutor. His last comment did make me very happy. We give worth to all sorts of abilities in this world, many of which when you stop and think about it make little sense: the ability to kick balls really well, the ability to sell us things that harm us like cigarettes and sweets, the ability to make rich people richer. All these things are incredibly well remunerated in our world, but what is the worth of the ability to smile and make a sad man happy? …nowt, so unfortunately I will never be able to monetise AJ’s grin, which is a bugger because, if I could, I would be a rich man!

Him: Prenatal diagnostics … that’s the true inspiration!

Every woman giving birth deliberately to an incurably disabled child should be, well, you know what I have in mind. Of course, these children appear to be happy because i) they are told so and ii) they don’t know a different way of existence.

And if mummy is fed up with everything the child can still be dumped at social services at no cost. Lord have mercy!

 

My friend: Don’t be too offensive, will you XXXX? Apart from anything else, prenatal diagnostics are not infallible.

 

Him: Unfortunately, I know one of these mums who gave birth to a child with Down syndrome knowing what was coming up. The poor little thing should have deserved better.

But mummy (43 years of age) so wanted a child because everybody else around her had one. Her then husband tried to talk sense into that woman but failed and subsequently divorced her. Mummy didn’t care, got the child, lives on benefits and clearly can’t cope with the situation.

There we are: a disabled child, not properly looked after expecting to live in life-long poverty. And I have no right to question this?

What’s offensive in raising a finger pointing to the thought that the well-being of a child and its own future should have priority over certain mums and their very own madness?

I will never give in to all sorts of politically correct issues. There must be one single loud and clear voice against all this happy-clappy-stuff which blatantly ignores common sense. And now you’re allowed to cull me.

 

Someone else: XXXX, you have every right to question … and every obligation to listen and reflect. Thank you for a lovely post, [MY FRIEND]. The author Morris West referred to children with Down’s syndrome as clowns of God.

 

Me: Oh dear XXXX what you need is a cuddle and kiss from my little girl, obviously you have not had enough of these in your life. What made you so unhappy?

 

Him: Well, Luke, I was never asked in the first place if I would like to be born. The answer would have been a strict no. Luckily, I’m not disabled so I have maximum control of this useless incident called life – including putting and end to it at my own discretion.

Now, let’s think of a child with Down syndrome which at some point in life is asking mummy or daddy, why things are as they are as above. What would you answer? Darling, you’re a clown of God. Darling, mummy was so selfish and thought she could handle you being different. Darling, sorry, your daddy is a do-gooder who, sorry, yes, sorry, found out too late that life wasn’t like in that video he found on Facebook the other day.

Not really nice answers, aren’t they?

It’s a good idea to focus on the dark side of life to see if the bright one is really bright enough.

 

My friend: XXXX, I don’t think you’re ever going to agree with the other people who’ve posted on this thread. However, I’m not going to cull you because I believe you have the right to freedom of expression. I disagree entirely with what you say, but I will defend to the death your right to say it. I hope you will extend the same courtesy to me. (Incidentally, that woman whom you cite sounds as though she’d have been a dreadful mother in any circumstances. Children aren’t lifestyle accessories)

XXX, Luke, X, and, thank you for your positive voices.

 

Him: Freedom (of expression and thought – which includes the stimulus to think after all) is indeed the thing to fight for. And you know I would do the same for you. 
Disagreeing over something is better than keeping up appearances. You’re so right, children aren’t lifestyle accessories – that was my point, bottom line.

 

Me: Oh, XXXX, believe me, I have thought about a child with Down syndrome from most angles, I have one! On one level she has been nothing but problems as she has all sorts of complications. But on another, far more important level, she brings the most incredible amount of joy to the world, not just to me but to everyone who encounters her. I could have done without the cancer and hearts ops but I would not wish away her Down Syndrome as it is part of who she is and the world is a whole lot brighter with her in. I have just come off a massively stress work call and need to pop out for a cuddle with her to recover. 
I have a son who “lucked out” genetically, he is handsome and very bright but who knows what will become of him, he could end up a junkie, be shot fighting a futile war or become a serial killer, my daughter is unlikely to do any of these. She is also unlikely to find a cure for the cancer that nearly killed her but she is also unlikely to invent a killer robot.
It is indeed often a dark world we live in but we should strive to find the brightness because it can be incredibly beautiful.
I am unlikely to describe her as God’s Clown as I am an atheist, it is an extra chromosome, nothing more.

 

Me: Here is a pic of her getting home four days after open-heart surgery. Now tell me the world isn’t a better place with that smile in it.

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(you’ve all seen this pic before, but I felt it would do the trick!)

Someone else: Your words, and perspective, are wonderfully inspiring, Luke. I’m glad your daughter is in this world!

 

Someone else: She is beautiful!

 

Me: I know!

 

Him: Luke, in your case the bright side has won and hopefully always will. What a smile!!!

 

My friend: I love that picture, Luke. Thank you for adding its joy to my thread. I hope to meet her soon. Thank you, also, for your restraint on this thread, which has been admirable. Your calm words, especially about needing a cuddle from her to de-stress speak more than any ranting could.

 

Me: Thanks [My friend]. I really do think Georg is not only entitled to his own opinion but also that it is entirely valid. I think everyone should think carefully before bringing a child into this world and even more so if they have DS, we certainly did.

 

 

 

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Ahhh…

I still can’t quite work myself up for a rant… I just wanted to share some joy.
I was speaking to Fo the other about how I enjoy small moments so much. I think it really helps me get through everything life throws at me. You might have just come out of some crap with more crap to come but if you can have a smile then the crap around the corner might just be a little more bearable.
So in that spirit, we grabbed a fine weekend. Lots of equine time, I even went for a ride. The British countryside on a sunny day after. Winter of torrential rain really is a beautiful thing. I particularly enjoyed the colourful hues of the trees that my Dad planted many, many years ago.
We had Fo’s family round for a Sunday lunch of one of the family lambs, which was superb. My mother-in-law’s horse won a race and we all had money on it! So that made up for Scotland losing in a tragic fashion in the last minute!
Anyway, enough schmaltz – just some photos of my ride, Otto and the cousins and horses. And a bit of AJ, of course!

My ride

 

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Mucking around on the ponies in the field.

 

AJ gets involved.

 

Snoozing on my knee

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At the risk of blogging over-exposure, I just needed an excuse to get in these two pics of AJ having just arrived home. As you can see, she is delighted to be back and looking none the worse for wear. Well it has been a good four days since she was being chopped open and running on a full heart and lung bypass machine. She really is as hard as nails, my girl.
So I am sitting on the sofa with sunlight flooding in, AJ snoozing on my knee, just where I like her most. After all the stress and worries, this is the best feeling imaginable.
Total respect for Fo. I think it is only because she exudes competence and confidence that medical staff think that we can cope at home. She is the one who makes it all happen, I am better doing the snuggling on the sofa (a job that needs doing!)
Next up, downstairs extension to make AJ’s new bedroom, all fully fitted.
Hopefully things will settle down a bit over next few days, so I can stop overfilling your inboxes and give the blogosphere a rest… well, maybe I will need to get a rant off my chest but right now, am feeling too contented.

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Stuff and nonsense

She’s comin’ home,
She’s comin’ home,
Ava-Jane is comin’ home.

sung to the tune of the Euro ’96 anthem

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So it was all a storm in a teacup, fuss about nothing, a mountain made out of a molehill, stuff and nonsense. Four days after open-heart surgery, apparently AJ is fine to come home.
I am absolutely terrified. It is obviously wonderful that we will have her back in the bosom of our family but it does feel very soon. The good thing about hospitals is that there are lots of nurses about and I like nurses. And before anyone accuses me of having a Benny Hill/Carry On tendency, oo-er Matron attitude: I like nurses in a purely professional capacity and there are lots more of them about than there here.
I came home for what I thought would be 24 hours. It felt great to be back and I put on some ska music and blared it out while I bounced round the house doing a few light chores. It is probably the bloke in me but I don’t think I had realised how stressed I had been feeling. I am sure that all the women readers of this blog are thinking “We did!” But once I had seen AJ’s face with her full cheeky grin and heard her manic giggles return, it felt like a massive weight had been lifted off my shoulders.
And although it is a bit stressful thinking that we are going to have to look after a convalescent only recently out of danger, it is going to be fantastic having her back.
But I mustn’t dilly-dally, there is lots to do round the house, trying to get it as clean and anti-septic as possible… Not the natural state of this household! So no time for NHS rants even though I have another strand brewing about the philanthropists who are skewing our health care to their own ends and I had better get on with the hoovering and disinfecting.
I will also hold back on blasting our heating company publicly for not having fixed the system. Fortunately we can run our heating and hot water off our wood burner and I got back yesterday to massive piles of logs very kindly supplied by Simon and the Mellors, who needs companies, when you’ve got friends.
More anon.

It’s like déjà vu all over again!!

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Mum and Otto’s visit today, Otto with a card from all his school mates.

Just settling in for a night on a plastic foldaway bed chair. Left Fo half a meal in the communal fridge. Wiping up vom (nothing to worry about, apparently). Rocking AJ to sleep (best to make sure she is properly asleep before lying her down, she loves to get her hands on her tubes and yank when you least expect it.) Been here before!
AJ making good progress. Mum brought Otto for a visit. AJ delighted. He and I went to the British Museum, I thought it would be educational. But as he has Horrible Histories: Egypt, Greece and Rome, there didn’t seem much I could teach him. “That is the dung beetle that pushes the sun across the sky.” Sodding know-it-all, no idea where he gets that from. It does me loads of good hanging out with him having a good prattle. He saw a post box in the hospital and said he thought the postman must be very, very nice. As we have a very nice postman, he thinks one that works in a children’s hospital but be extra specially nice. I didn’t have the heart to tell him that I didn’t think they appointed postmen according to their level of niceness, particularly not since the privatised the Royal Mail.
The post title was a fairly lame and old joke but to a certain extent it’s true, this is our third time doing this so if it was déjà vu last time, it is happening all over again. Though I am not sure… I wonder if the expression only refers to feeling that you have lived an experience before when you actually haven’t. A bit like it is not paranoia if the are actually all out to get you!

Silent Wailing

There are many times in life that you might wish that kids would wail silently. This is not the case, however, when they wail silently because they have a tube stuffed down their throat so that there is no air passing their voice box. It is really heart-breaking seeing her doing this with tears welling out of her eyes.
Apparently she had a collapsed trachea during surgery which we have only just heard about from the nurse. So they need to keep her breathing tube in for longer than expected.
She really is the bravest little mite imaginable and my respect for her grows ever stronger. She has just had the major tubes that were draining her heart and lungs pulled out, which was pretty grim. The nurse asked me if I was going to faint so I must have looked as groggy as I felt.
She is also off the various painkiller and sedative drips that she was plugged into. She was on morphine and ketamine, I have know some people in my time who would have been very happy to get their hands on some of those! So from now on it is calpol. I am always amazed by the role that calpol plays in healthcare. It feels like something innocuous that you have stored away in a cupboard to give the kids when they are feeling a bit off colour but it is obviously pretty potent stuff. It got her through a number of chemo-related fevers during her last hospitalisation.
It is quite funny how Fo and I kick to AJ crisis mode. I suppose as we are pretty hard bitten by now having been through a number of these sort of things. We had a chat with the Chief Nurse here who was doing a random meet and greet tour and she was very interested in hearing our opinions on GOSH vs the JR hospital. We certainly have no complaints about either but as AJ was about to go under the knife with her staff in attendance, we took the strategic decision to big up GOSH. We could write an interesting study on living in family accommodation comparing the facilities offered by CLIC Sergeant for families of children suffering with cancer to those from the Sick Children’s trust (much of a muchness, both a massive relief).
Nurses really are the most wonderful people imaginable. In fact I am almost feeling strong enough that my next blog post could be a rant about how the NHS needs our total support and that we shouldn’t moan about health tourism as the only way that many foreigners can find healthcare professionals from their own countries is by coming here. You have been warned.
We are good at making sure we each get some time to switch off in our own individual ways. I have had two fine moments today, both just fifteen minutes in the sun. It is odd being in London without a mission — either social or professional and I had a fancy coffee, while trying to do the Telegraph big crossword (my most profligate habit — I keep the crossword and burn the rest, it burns better than the Guardian… cheaper paper, heehee) and have just got back from listening to the News Quiz podcast in Russell Square. I don’t think I had been there before, very pretty.
So we are holding it together, AJ is on the mend and we will have one more experience to tally up.
Fo wants me to say thanks to all for all your very kind messages and thoughts, I completely second that, it means a lot to us to know that so many of you are rooting for us and especially Ava-Jane.

Here is another random one of her looking cute from a couple of weeks ago.
I will refrain from posting any more grim ones, she currently has strawberry blond highlights from the blood, and wait until is is looking chirpy again.

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