Tuesday, March 30, 2010

Taking my Medicine

The bottom line is I guess - in all the discussion - for me - unavoidably - this is the face I see. I could not imagine a world without her in it. It would devastate me.
There has been some whooHah in the paper since Chris Meney wrote an article discussing prenatal testing and the decision to terminate prengancies where the unborn child/foetus is found to have a 'little extra'/DS.
Now I can understand that the Catholic Church has a credibility issue - espousing rights - when elsewhere in the same paper we read about the appalling denial of systematic, endemic child abuse perpetrated by clergy. I get that. I know that some people are passionately anti church. As soon as I read the author description - I could have told you the ultimate stance would have been pro life - because that is the doctrine of the Catholic Church.
I was dismayed reading the online comments and the letter section of the Sydney Morning Herald though - so many people ignored the central discussion to rant against the catholic church - so that his point is largely ignored or 'lost' in the diatribe.
It reminded me of my AUnty Pat - whenever she hears that soemone in my house is not well - "Cod liver oil" becomes her mantra.
What sort of society we want is something that everyone has a stake in. As the parent of a child with DS I would have to say that my experience in parenting her is pretty much the same as for her 'typical' twin - very rewarding. Tough at times. But overall - the best thing I ever did. I didn't 'spare' my daughter the difficulty of living. I try and face it with her. Yes I worry about the future - but not that much - I know that there are lots of people who Hannah is building relationships with every day that will be there for her in the future. I don't think we are 'burdening' them - we are giving to them - the slow road, the less travelled road, the scenic route. A sense of being useful, of empowerment - because I can help someone along the way. The opportunity to look at this world and our lives through someone else's eyes. It's a gift.

So to the economists and scaremongerers, the fearful - I feel like I am having a good dose of my Aunt's cod liver oil when I read your opinions. You remind me that the world is full of differences and some of those differences are not for me. That is not how I want to measure my life or its value or the value of my daughter.
To those who feel that they could not cope with a diagnosis like DS - my heart goes out to you for your loss. It is not a decision that I am in a position to question or disagree with. I do however hope that people will always think before such a significant decision is reached, that both the positives and the negatives are considered - before a decision to terminate is reached. I hope that such a decision never becomes 'automatic' but is always one of difficulty. (please note - I said difficulty not judgement!!)
My children. I have the same dreams for both of them - good health, good friends, kind hearts, meaningful relationships, paid and unpaid employment opportunities. Sure I have a secret dream that Kit will change the world - he will use his incredible talents for good. He might even become a cardiac pediatriacian - now that is a worthwhile fantasy. Hannah - she too will change the world with her talents but I am not sure exactly what those will be just yet - maybe packing groceries, maybe a sheltered workshop, maybe an office job somewhere - you know - just a regular job like most of us do - if we are fortunate enough to have a job. Her future employment is important - but it isn't the sum of who she is. I expect them both to lead 'fulfilling' lives - whatever that may mean for each of them.
Sometimes I feel like this - like running away from it all - when the harsh gaze of others gets too much. But then - that is my take on the discussion - Hannah's voice is noticably absent. Isn't that the classic - that the person with the disAbility gets 'forgotten' in the passionate debates over their worthiness and their rights? Hannah is just a little girl, running. Having fun, learning and growing. Nothing more - but most importantly nothing less.

These photoes were taken on a typical weekend while we were out and about at a local music festival. The twins had a ball - eating icecream and climbing this magnificant tree. Our lives are rich and fulfilling - just as they are - not 'because' of Hannah or 'in spite of' Hannah - but just because this is our life. Ok I'm off to study now - I feel the sledgehammer is swinging. Cheers.

Thursday, March 25, 2010

Distant Stars

A friend recommended I read Colin Cotterill's books - in particular DIsco for the Departed. I read the coronors lunch because that is the one I could get - and enjoyed it. I bought another and loved it. Now I have read all of them - I had to get my local bookstore to order the last 2 in for me - 33 teeth (which I am reading now) and Disco for the Departed.

From a DS perspective Disco is a great read. For mine - I loved this line in 33 teeth "When you befriend a man whose mind lives on a distant star, you deserve whatever you get."

The stories are in the genteel style of my much loved Agatha Christies - full of gentility. The setting is Laos. The main character Dr Siri is a rather sexy old commie - the national coronor - and shaman of sorts. The stories are lovely, funny, awful, wry, tender, brutal - and for those of us with a special interest in DS - I don't believe there is a one of us that will be unhappy with Mr Cotterill's portrayal of Mr Geung the lab assistant. Lovely stuff. If you don't have your holiday reading organised - I'd recommend these.

Check out his great website - http://www.colincotterill.com/ - it's linked in the title too.

Wednesday, March 24, 2010


Here is a tribute to creativity. With all our sameness as humans in this world I am awed by the differences we can find in our creative selves. Here is a tribute to the twins' creativity - it's awesome.

This morning they were both busy 'working' making 'books' where they staple some sheets of paper together and then draw/write/paste inside - whatever tey want really, with great focus and attention. Once that was done Kit decided that his teddy bear Patrick needed a backpack to take his new book in - when he went to 'school' - so all on his own he 'made' a backpack for his bear. Hannah then of course wanted one for her doll but it was time to leave for school so we convinced her to make do with one of her many 'shopping bags'. As I was backing out of the driveway everyone's backpacks in the boot - I said that I'd make sure Patrick took his backpack to his school - Kit agreed but then felt he needed to clarify with "If you really took him there ...they wouldn't know what to do. He is just a teddy bear and doens't really go to school Mum" - Lovely - do you think he'll be looking out for me when I am older - making sure I dont' embarass myself by not knowing the difference between reality and pretence??
Hannah and Kit LVOE craft - Kit is so industrious - he is always 'busy' creating. Yesterday I kept hima thome from school because he had been sick the night before and by the afternoon when he felt better he decided to 'make' astroboy from blocks.
The flowers I had at my wedding 16 years ago are blooming still in my garden - they cought my fancy this morning...

Sunday, March 21, 2010

March 21 is World Down Syndrome Day

Hannah is feeling better although she still has a definite cough and some tightness around her chest - especially at night. On Friday we had the traditional 'movie night' which the brats love. This week's viewing was the new Astroboy movie - Hannah LOVES astroboy.

Afterwards neither child wanted to go to bed - so to delay the inevitable they wanted to watch the special features - one was on how to draw Astroboy. The guy said to draw 4 circles one under the other for proportion - so cirlce one became his head and circle four his legs.

Kit was fascinated by this - and straight away wanted to draw. They watched the bonus feature once more and then Kit sat at the bench and drew a pretty good Astro following the principles the animator ahd outlined. Hannah bear then got her act together - and without any prompting she too drew teh 4 circles exactly as had been demonstrated. Her overall Astro had a few more loops and curls but still - a really good impression - and I really would not have expected her to 'get' the 4 cirlces that quickly without any other instruction or help. GOod Girl - we love you sweetie!! Happy World DS day. In honour of Hannah and other's wonderful 3rd copy of the 21st chromosome I am going to be doing some uni work (eek) buying hot cross buns after church and making chocolate pudding for dessert. Have a great day everyone.

Friday, March 19, 2010

Good News Bad News

I spent about 5 hours from go to wo yesterday taking hannah to the paed - she ahd the worst night I have seen in a LONG time poor darling. I slept in clothes in case we needed to rush to the hospital - but we had taken her to the GP taht afternoon and had a plan to help her through the night and I had an appointment with the paed the next morning.

The appointment was about an hour late and began with the Dr using his best patient gentle voice saying "So which hopsital would you prefer I try adn get her admitted into?" Because he thought she had croup/pnuemonia. Thankfully by the end of our appointment he said that while shw was in pretty poor condition he thought that if I included steroids witht he anti biotics that she was on from the day before and kept her quiet for a few days she should be ok. He also said that I could ring him with my concerns that afternoon and asked that we call him the next day to let him know how she was going. Thankfully although she still had a coughing fit at 4am and nearly choked yesterday afternoon cos she coughed while eating spagetti - she is clearly 'on the mend'. Today she is not doing ehr usual Sat activities of music and Rainbow Club which she LOVES but I am hoping that if we keep her quiet all weekend she might be ready for school next week. Everything there is going so well - I really don't want her to 'get out of routine'.

So the good news? Besides the lack of hospitalisation is that when I described the seizure Hannah ahd on Tues morning - he said that it sounds definitley like a febrile seizure and the way I described it means that he is fairly confident that she is growing out of these seizures. Halleluia - cos those are hard to cope with. I wasn't expecting that piece of good news and just thinking about it still makes me smile. Fantastic!

Wednesday, March 17, 2010

My Favourite - a milestone

It is 2 in the morning and here I am...listening to Hannah snore - something I haven't heard since her T&A last month. She has
been restless at various times from midnight, to one o'clock. At one thirty she handed me her medicine cup which was beside the bed I am sharing with her while she is sick. She wasn't allowed more panadol until 2. SO I made up some gastrolyte and gave her a dose hoping that would distract her then at about 10 to I cracked and gave her panadol. Now she is sleeping - well except that she just popped up with a big smile when she saw the computer on the bed!!! Best go - the favourite milestone was tonight at some point we were talking about favourite foods and instead of saying 'Hannah' in the third person when pasta was mentioned she said "My favourite". I think that is worthy of a post - another milestone ticked off.
She has another habit at the moment - if I say she is a cheeky monkey or a silly sausage (I don't say that one - but you get the idea) she always says "no,..Hannah". which I love to hear.

Tuesday, March 16, 2010


Hannah has a fever today. It meant that she had a fit this morning - unlike her rpevious ones - this time her arms were stiff and her eyes stayed open and staring (as opposed to rolling back in her head) like she was trying hard not to 'lose it'. It breaks my heart - she came out of her bedroom to me in the lounge - I was sitting on the chair waiting for her to come for a cuddle, when she reached me her voice went wobbly and I could hear the distress in her voice (again) and then she was fitting. I managedt o stay a little calmer this time. I checked the clock as I left the lounge area so I could see how long it lasted for - yelled at DH in the shower so he knew what was happening and took her into our room - to lay on the bed in the recovery position. All the while trying to reassure the poor baby. It didn't lst very long at all and although she was a bit tired she didn't go to sleep. She refused to eat or drink so in the end I resorted to Hydrolyte in a syringe - that worked thank goodness - I simply told ehr it was 'medicine' - she is sucha good girl about things like that.

In other news an old school friend of ours had a farewell party on the weekend - ti was lovely - we really enjoyed catching up with the 'old school gang' and meeting some of his partners friends too - He is off to Vietnam to live for 6 months - in an attempt to learn the language - his partner escaped to Aust from Vietnam years ago now. She is just lovely so it was good to catch up with them. hannah had a ball - and she spent quite a lot of time 'cooking' - here she is 'cooking' with my goddaughter...

The twins have had a few school parties to attend too. We went to one on the weekend where there was a magician. The twins loved it. It was at S's house - and both twins really like him - he has been in LDC with them and now they go to the same school which is nice.

Thursday, March 11, 2010


The twins just love lego. They play with the large duplo for ages on end - Hannah especially still loves it. Kit ismore into 'little lego'. He saves up his money and gets kits as well as his parents indulging him. I bought them both a Toy Story kit for Hannah's recuperation from T&A surgery. It is a bit hard for her - the fine motor skills can be a little challenging as well as the concept of following an instruction book - but she gets the idea and her father is fantastic and patient with her - just last week they built the buzz car together.

One of my nephews foolishly showed Kit on the lego site where you can custim make your own lego - design it - submit it and you receive a 'presonalised' lego kit complete with instructions. It costs a bomb!!!! We have told Kit - one a year if he is really good - I have to say I think it was worth it - a wonderful father son activity that brought him so much joy - and teaches him skills.

Wednesday, March 10, 2010

Pre Easter Update

Just cruisin'. This was taken last week - before DH bought me a fantastic 2nd hand slr camera - I can't wait to play around with it...
Both kids have found the new routine tiring - I love this picture of my strapping boy - I wonder how much longer before he drops all those beautiful little boy traits he has? he has always loved a cuddle toy in bed - unlike Hannah who loves playing with dolls but at bedtime puts them all down at the bottom of her bed.
Things have been going well here - although poor old Hannah has a nasty ear infection - lucky the stubborn discharge - met with her ENT today (rather fortuitous timing)so hopefully the drops we now have will help banish the infection.

School is going well - both brats are enjoying it. Kit is now signed up to a local soccer club which I think he will like and all going well Hannah may even move up a grade at swimming for next term.

As we approach Easter I have been thinking about hte best way to explain it to Kit - he is old enough now to notice the crucifixion and I don't want to freak the little man out - lucky I found a book by Brian Wildsmith called The Easter Story (published by Oxford Uni Press) that is beautifully illustrated, and faithfully told in a way that is appropriate for younger children - they can relate to the 'little donkey' who journeys throught he easter story with them. Lovely - Highly recommended.


A grub got into Shamptons - thanks to Mahatma Ghandi I think - anyway I think I have slayed the beastie - so here is a FANTASTIC cover treat for everyone:

NSW and Vic Down Syndrome Associations have joined forces to produce this excellent members journal - this edition focussed on education - with some great articles to help us on the school road - and this gorgeous cover - I am very proud of my brats. Thanks NSW DSA - for providing great support and demonstrating excellent taste in matters of style and beauty...

Tuesday, March 02, 2010

First 'lost' tooth

It's done. When Kit came and told me his tooth was wobbly (just days after starting kindergarten) I cried. I didn't need yet another sign that my boy was growing up. Tonight - it fell out. It looks so small and precious. How do I preserve it I wonder? I have googled all sorts of stories - from glycerine and water to more costly containers. At the moment it is bagged and dated - thanks to Glad sandwich bags - the Mum's fried. Any suggestions??? I'll post a pic - of either the offending tooth or the gappy boy - whose beautiful diction already has a little boy whistle to it ...