I’ve had my behind soft-kicked by His Girl Friday because I’ve been so lazy. And fair play. We’ve been busy and never seem to be on top of things, but that’s no excuse.
I wanted to mention how delighted we are with Cathal’s progress. We’ve gotten very fond of the wee man (even though we STILL haven’t met yet) and we were all anxious when his cardio surgery was announced. Thankfully he’s past that now and well on the way to terrorising the household. His supergran Nan P has been doing a great job of keeping us up to date, and now we’re getting the full, dramatic story from his mum too, now that she has a minute. Makes for nervy reading by times, but cardio issues are a reality for two out of five kids with DS, so it’s important to know.
On a different note entirely, a grim smile was afforded by the news that Sequenom’s shares fell by a huge amount last week. You may remember quite a while back that I wrote on the release of their ‘wonder drug’ that could detect DS in utero. The fear being, of course, that early positive detection would mean early abortions. This won’t stop them, of course, but losing money is the only thing that this particular shower of monkeys will ever understand. *** them. (Insert triumphalist swear word here.)
I wrote a while back about August’s upcoming World DS Congress. I had hoped to attend, but at €375 per guardian attending, and €200 per person with DS, it’s unjustifiably steep for us. I’m sure they’ll do well, I know it’s a huge organisational task for them and the costs are no doubt enormous but nonetheless I am a little dismayed that the prices are quite so high.
Finally, on an up note, I want to link to Hammie and give her a massive round of applause for the great work she’s been doing on her own website and also at Irish Autism Action. This is one tireless lady and I have huge admiration for her. Drop in and learn a thing or two about what the autie crowd are doing to push their agenda. Plus, if you want to see what a great big softie of a Boyzone member looks like when he’s having a little cry, Hammie’s the woman to go to. 
Mucky pups 'r' us
Oh Shucks! Cheque is in the post….
xx
(and you two boys look mighty fine in that Pic nicky.)
Hey Hey! Welcome back!
Jacob looks so lovely… ok, you both do!
Lovely roundup. The pic is wonderful.
Dare I ask what a “Mucky Pup” is?
Ahh well Nick, you’ll just all have to come out to one of our weekly coffee mornings to meet the gang….be warned, you will need to bring cake. Duffo (Ava’s Mam) is doing great work to get a parish hall for the group, an official DS Parent and Toddler group…do drop by.
Totally agree about the cost, ain’t going either….money needs to be spent on a humongous holiday and SKIP instead. Hope the free stuff is good
Hi Nick, was just a wee nudge tis all!
love the pic!
sorry to hear of the expense; I understand this. We’ve recently gone to a fundraiser to help ‘youth at risk’. It was $600 per plate. Luckily as my husband is one of the intervention workers, we did not pay full price.
…It would probably be too difficult for the DS Congress to differ between sponsors and guardians, but I would hope they’ve considered education is just as important as fund raising. Just my twa pence, and perhaps even, I’m not understanding the whole picture.
Hi Nick, Beautiful photo of you both, there’s something really warmy going on there.
The Irish economy was on our news again last night, George Lee was looking very worried. Does any normal family have the money to attend this world DS Congress?
I have a few suggestions:
1. turn it into a cottage industry along the lines of a Cavan wake. You know, everyone who wants to come brings a sliced pan and some ham and cheese or a half cooked chicken, whatever. Make a few barrels of coffee, tea and Ribena, a plate of ginger nuts. Everyone comes and meets everyone else, shares stories and experiences, that must be whar it’s all about? There could be a workshop in the front room and another in the garden behind the swings. The kids could distribute brochures and leaflets.
2. You could buy a case of peach schnapps and sit outside the venue like it was a concert on Landsdowne Rd and pick up snippets of info from folk on the way in and out.
3. They could make a family café on the last day where ornery folks could come by for free and shake hands, exchange experiences… that must be whar it’s all about?
4. I could get back to work and finish the agenda for the meeting that starts kl 10.
bye for now
I love your Crisp White Shirts, Nick.