Thursday, July 26, 2007

This and That
Thank you Chirstina from Prince VInce - I will respond to the 'award' next post. It was really lovely to receive it.

Hannah likes climbing nearly as much as she likes watching her favourite dvds ... here she is very pleased to have moved the step ladder over in order to get the 'chick' nightlight from her and Kit's chest of drawers.
The brats had a lot of fun at their Nan and Pop's today (as usual). When we got home there was a little free time before I had to get their dinner so we got the play doh out, did a puzzzle, some counting and a brief colour matching game but what they really loved was threading these cotton reels and then using their creations as shakers. They ran around like maniacs singing and dancing to snippets of Wiggles songs that Kit sang for them. So beautiful and vibrant. The shakers are looped throught he safety sides of their beds as they sleep tonight.
Scientists realise that the 'Happy 21st' chromosome can malfunction just like the others:
Music Therapy

Lifestart - Hannah's EI provider has received a grant for a music therapist - 1 hour a week. She is using a programme developed by QLD Uni. The twins have gone for 2 weeks now - and absolutely LOVE it. It is nice to see some other kids in the programme - with a range of special needs and because Lifestart has a siblings welcome policy there are other 'regular' littlies there too which is good for Kit.

It is located in a local primary school and this week one of the school kids came to the door. He is one of 'Hannah's people'. He is very handsome and very cheeky given he knows that the school rules do not let him come to this room - it is leased to other organisations to use. Hannah had her Dorothy the dinosaur toy in her hands when Isaac started beckoning for her to 'come here ...' - maybe he saw a romantic opportunity - or maybe he just wanted her Dorothy. Either way we sent him packing - they are both too young for dates at the UP! Club (DSA NSW's social gathering for T21 community) and besides I have arranged her boyfriend with another Mum at Lifestart - a beautiful little fellow called Nathan.
My own punk rockers although I don't know whether the colour coordinated guitar 'straps' are very punk ...

I have been feeling pretty down today - goodness knows why (I think it is part of hte turning 40 mean reds) but there it is. It is nice ot be sitting here sipping red wine and P is playing DJ - we are both singing along to this classic from The Saints (Oz Punk circa 1980s for those of you who don't know who I am talking about) ...
Don't send me roses send me fire
fill me up I'm falling more than I fell before
Save your scars don't leave them burning
take your time don't wait for the rest to come
& come on love we can face another day
I can hear the angels coming to chase the night away...
Easy now & watch for warning
close your eyes & wait for the light to shine
we can take it all together
take my head & give it to a stranger
So come on love we can face another day
I can hear the angels coming to chase the night away...

Tuesday, July 24, 2007

One in a Million

A little meander down memory lane ...

Thanks to Michelle at Big Blueberry Eyes for this link to an article on a Mum who like myself has twins one with DS. This woman is a veteran though - hers are 17!

Sorry - I am technologically primitive - but I think I managed to link the article to the title of this post.

My twins: I think this is a little like what they may look like when they are old and grey ...

Monday, July 16, 2007

SICK ... yet she can still muster up that killer 'camera smile' of hers!

Hannah has a virus and has been lying on the lounge (when not throwing up). I stayed home with her today - not the best look to miss the first day of term - lucky work are so understanding. Kit was a fabulous little brother - patting her when she was lying on the lounge and otherwise playing on his own (band practice and some building with their duplo set) while Hannah refused to be away from Mummy. When I took her to the doctor he was very cute - took it upon himself to introduce Hannah and say that she was sick. When we were leaving he noticed the door had the number 8 on it and was chatting to the dr about how that was the number of the house he lives in - his new house ... he really is such a precious and sweet little boy - now I just hope I don't wake up to him vomiting and lethargic tonight ... the joy of twins!

Fun Weekend ... Life is GOOD!An eventful, and fun weekend full of social engagements. The twins would no doubt vote their wild cousin Hamish's 8th brithday party as the pick of social events although they also had fun at a cancelled party on Sunday morning and with a little girl called Lucy who visited us with her parents for lunch on Sunday. By then Hannah had started to show the effects of the above virus ... (sigh)
Bubbles ... I took the twin's new bubble machine needless to say it was a big hit!

Beautiful - what more can I say - like a trojan horse - she is full of surprises (mostly good thank goodness!) When I see her like this I know that she can do anything!
Running Wild

Thursday, July 12, 2007

Wednesday, July 11, 2007

Bitter, Sweet Vinnie


This morning I read this wonderful piece by Queen Serene at

I felt a lump in my throat when I read "I don't have a problem sending my other kids out the door in the morning," Jen says. "But every school day, after Jake gets on the bus, I watch it drive down the street until I can't see it anymore." [Jake being her son with 'special needs']

"I watch the bus drive away, all the way". I didn't really think about it much more though - simply that it had been a beautifully written piece and that I could really relate to that mum and the bus. I recognised the difference in anxiety I feel about Hannah compared with Kit.

Later that morning I took the twins out to their cousins and they had a great time. I have to be careful when they are all on the tramploine - Hannah's head just about bounces off as she falls to the ground while they run and jump and roll with no difficulty. Hannah's legs splay, she loses her balance, she still walks wonky and jumping is a long way off but she wants to have a go and I don't want to stop her. I got in with her and the other kids and make sure I remind them to be a bit gentle, I try and make sure no one kicks Hannah in the head or lands on her and I try and help her have fun with the others - we play ring a rosie. She gets a chance to walk around etc. They all have a lot of fun.

On the Drive show I listened to in the car on the way home, they were asking listeners to ring in and tell their greatest fear. There were some sad, interesting, scary and wacky fears being shared. It made me think of mine and that bus. That is my greatest fear - so deep it could paralyse me if I let it so I just paddle around the edges - I couldn't ring up and put it into words for Sydney drivers to hear one afternoon that is for sure. This fear runs too deep. It is too real.

Every day as I drive to work I pass groups of girls waiting for the bus to take them to one of our local highschools. Without fail I feel fear grip me, my palms feel clammy, my stomach is in knots. I try and imagine Hannah one day being like them. Carelessley wiating for the bus, innocent and cruel as only teenagers can be. So vital, so independent (why can't I control everything she experiences for ever???). Peering at the world beyond childhood. Paddling the edges of adulthood. I dread Hannah's teenage years. I dread what might happen when P and I turn up our toes even more - so much more in fact that I don't dwell on it if I can help it. One day we hope to establish a trust fund or some such thing to give her some financial security when we are gone. More than that I can't bear to contemplate.

One caller rang in and boldly said he feared NOTHING. What we need, he said, is LOVE. Love, I scoffed to myself. If he can say he fears nothing then I don't think he has had a child with a disabilty. More than that though - because I love Hannah absolutely just as I love Kit. So fear is an essential part of love. When Kit is sick or upset I feel the same protectiveness and intense love I get watching Hannah on that bus. Her vulnerability means that those feelings are closer to the surface and manifest themselves more often but it is there for both my children so perhaps love without fear is impossible. I fear that she will get hurt, that she will be left out.

Later that night when the twins were safely in their beds dreaming I watched My Brother Vinnie Check out: Wow. It was a wonderful 30 minute show as part of a series called Inside Australia that SBS are showing. Aaron Pedersen is a hot diggity dog actor. The doco followed him and his brother Vinnie. Vinnie has mild cerebral palsy and an intellectual disabilty. It was a sensational show. Aaron very eloquently described how Vinnie had seen something in him, called on him to look after him - and then he said how it was a gift - he had gained so much from the love of his brother, they both had. They had had a difficult childhood and later on when thir Nana died Arron had shouldered the responsibility for Vinnie with no respite care and no government support available. It got too much and he described what a lifeline it was for both brothers and their relationship when Mum Francis took Vinnie in to live with her. Aaron is still very much involved with his brotehr but the move gave them both a bit of space to breath. Magic stuff - this doco was more powerful for its lack of sentimentality but its powerful respect for the human spirits it was portraying. A positive hopeful piece. A good way to end my day.

Monday, July 09, 2007

Random Pics
"Ice cream"

My Angel ...
A world of her own ...
Winter Lunch
About 4 years ago we had a fabulous turkey lunch with some very dear friends. At that time there were only 2 children. Yesterday we finally repeated the experience with a few minor variations on the menu; no variation on the fun had and a fair amount of variation in the kids present - now we have 5 between the three couples - aged from 18 months up to 10 y.o. As before we all contributed to the meal and it was coordinated by the gorgeous Emma and my P. Mmm ... delicious - hopefully we won't have to wait another 4 years before repeating the experience!

It was great to notice that Hannah was chatting away (mostly single words but still!) to Rosani while they were drawing at the chalk board - she loves R and her brother Subash but is normally fairly quiet when visitors are here no matter how much she loves them.

Roast Turkey
With herb, bacon and bread based stuffing
Served with:
Roast potatoes; pumpkin gratin and braised peas
and Pinot Noir

Pumpkin Pie made with gingernut crust
Served with fresh cream and maple syrup.

Rhubarb and Strawberry Trifle
made with marscapone cream

Almond bread and Baci chocolates

Thursday, July 05, 2007

Some people have a facination for twins. Scientists do too. I sometimes feel that mine are a fraud. I have twins - but are they really twins? They are not identical and given Hannah's extra chromosome they are developmentally far apart, Hannah is at the bottom of the regular growth charts, Kit towards the top - sometimes I ask myself - are they really twins or more like big brother and little sister?

I love having twins. Maybe part of that facination with twins is that until you are one, you don't really know. There is something so mysterious about the relationship that develops between littlies in utero and as they grow. Twins come in all shapes and sizes. Some are the sole surviver - but still a twin and conscious of it too. I watched Kit and Hannah play together and it seems so obvious to me that they are twins. Developmentally similar as well as different. There is a rhythym in their play - a seamlessness that is surely because they are who they are and they are twins. When Kit wakes in the night he often asks immediately for Hannah - he likes to know where she is. If I am doing something with Hannah she automatically says and signs Kit (his sign name is cat whiskers), she thinks of him as part of herself as well as separate. Yes no doubt they have a special relationship and part of that magic is because they are twins.

Now if only they'd eat their cereal, the little brats ...

Snot City
I am SO tired of snotty noses. I usually get Hannah a flu injection in preparation for winter but this year I missed the snot free window - I think it only lasted for 2 days and very soon it will be too late so I hope that this winter isn't especially gruesome. Kit loves these Pooh Bear pjs even though he is much too big for them now he still rbigns them out occassionally - wears them and then the next morning pouts them away in Hannah's draw because they really are too small for him. I haven't been game to put them on Hannah - Kit would want them again straight away I suspect.

Sunday, July 01, 2007

Grandparents visit:
My family are essential to me. I can't put into words clearly just how important they are - it was wonderful to see my parents. (Last time was Christmas). It is such a priceless gift to give to the twins - part of their developing sense of who they are that such visits build up their relationship and understanding of their grandparents. Even though we live in different states we are able to maintain a close relationship. I have been blessed with wonderful parents.
Dad's pics:
Brat on the go
Cheeky brat on Nin Nin's walker
Grandchildren ... TwinsMy parents were just amazing when the twins were born - I knew that they were there for me - no questions. Now I know that they would knock me over with Mum's walker in thier haste to get to those twins but be just as quick to turn around and give me a hand back up - I am their daughter after all!
Beautiful Girl
Silly Shot
GrandpaI love my father to bits. He had a difficult, poor childhood - not that he will admit to - but Lordy - the bits I have gleaned over the years ... he did absolutely EVERYTHING to ensure that his children did not have that sort of childhood - and he SUCCEEDED. He is loyal above and beyond - to this day I have not heard him speak a word against his father - a man who clearly not worthy of my Dad as his sondid not value others as much as he did himself. As children my mother would accuse us of loving Dad too much - of putting him on a pedestal. Well even now, older and supposedly wiser - he is there still, standing tall. He cares for my Mum without fuss - a fact we have only recently begun to grasp - he puts out her breakfast in the morning, rings from work to make sure she got up ok. He cooks and does the shopping. He weathers her moods and her medical appointments without fuss. He loves her unconditionally.
Nin Nin I am my mother's baby. We have always been close. Sometimes it is hard to see the vibrant ambitious woman I loved hobbled by arthritis, diabetes, heart disease ... but she is SO much still there - the SPIRIT is strong - I saw it just this weekend. It was so nice to see her enjoy herself - visiting with the twins and then at dinner on Sat night when the twin's Nan and Pop came over for dinner. She taught us of course that our father was amazing, a hero. He was her hero then and he still is today - but if he is there is a part of that that is due to her.

My parents met when Dad was 16, Mum 18. They married on Mum's 21st with court permission because Dad was still a minor at 19. He was also an orphan by then. Mum's childhood was spent in the country - her father was a labourer and rabbitter on various stations. My eldest two sisters were born in a small country town in SE QLD. The second one was born deaf, with vision impairment and in need of heart surgery - a rubella baby. The family moved to the big smoke of Brisbane circa 1966, before I was born - looking for the resources they needed for my sister and a future of greater opportunities. Our parents did everything they could to raise us with love and opportunities. I can't possibly thank them enough. Their parenting continues of course ... and for that I am truly thankful.

Musical beds. Some mornings it seems impossible to work out who is in whose bed here. In some ways that is the good thing about the brats being out of cots - if they have a restless night you can get a bit of rest lying down on their bed at least. Here is a pic taken by my hubby - about 30 minutes after our visitors left today - I tink I was asleep before Hannah - Kit was on his way to his own bed but had to cuddle uMmmy and Hannah en route.