Sorry for the maudlin self indulgence. I really needed to vent some of those intense emotions. I am feeling much better now although very tired. Little brat has had a good day and whatever occurred on Sat seems to have passed (I hope!). The brats had a great time at preschool and I am REALLY happy with the start they have both had there.
Monday, February 02, 2009
On a brighter note...
Sorry for the maudlin self indulgence. I really needed to vent some of those intense emotions. I am feeling much better now although very tired. Little brat has had a good day and whatever occurred on Sat seems to have passed (I hope!). The brats had a great time at preschool and I am REALLY happy with the start they have both had there.
Sunday, February 01, 2009
loss
Hannah has been sick.
On Friday I took the twins to get their 4 year old immunisation shots. Hannah was a barrel of laughs and I am sure her GP was impressed with her general adorableness. Sat morning ... she came into our room just after 7 and says "Mummy" and runs back to her room. I can hear her but I don't know whether she is sobbing or about to throw up - I go in to check. We lie together on her bed in the dark - the sounds continue as we cuddle and I know I have to take her into my room where it is light to get the second opinion of her father - she is not well.
My heart sinks. I've been here before - but not for a while.
She is ghostly white - DH goes into control mode. he's holding and talking with her. Totally focussed on her - barking out orders "Apple Juice" to me, terrified watching and hovering. We carry her out to the lounge - he props her up as I pour juice into her sippy cup. Hannah's eyes roll back, her arms are bent and they jerk, her legs are bent and they kick. She is lost. We are terrified - such a pitiful word for our hearts clenched. Our breaths held. It's only a couple of seconds, it could be years. She's so tired. She flops. Her father coaxes her - "What is Hannah doing today?" "Bikeriding" he says with so much more conviction than he could possibly be feeling. We love you so much little bear. Our hearts are breaking...
I fumble, struggling to recall what I used to do - ring the GP - he's closed - his after hours number is a Catholic school (is that a message?), scrambling along the side of the fridge - eureka! it's there, coming back to me now - Westmead children's hospital's helpline. YAY!!!!!!!!!!!!! I ring - we go through it all, I give our details, I describe a few times what happened. She draws a picture from my inadequate words. Take her to a hospital. "I shouldn't just wait until her GP opens at 9?" "No."
Oh My GOD!!!! We are all in or pj's. She is sitting up - talking about bikeriding with her father - WHY is he going on about that - as if she is going anywhere but hospital at this moment????? She smiles and is reassured - yep, bikeriding and the park today for Hannah.
We ring the grandparents, half asleep but ready. It's taking so long - should we call an ambulance?? She is not sitting up on her own anymore but lying on my bed watching me trying to find something to wear. Something that says "good mother" , caring and kind - a middle class trakkie dak for a hospital stay. Kit is bundled into the car and dropped at Nan and Pop's house. No time for chit chat. We are off.
I sit beside her in the car. I love you, I say. Crying. DH drops us off at the entrance and goes to park the car.
Triage nurse asks the usual questions. I sit there. Calmer now we are in a safe place where surely my dearest daughter's safety is finally someone else's concern. Someone else can 'deal' with her and give her back to me as she was before. Eventually she asks what happened and why we are here - after the particulars of age and name and address are dealt with. Thank goodness - now we are down to business. Do I tell her now? Is it clear enough to her that this information makes no difference to us right now but is offered purely to help her in the art of diagnosis? Is it obvious before we say anything? Are we treating her like an idiot? I don't know but I feel it needs to be said "Well, she is usually a bit floppy anyway, she has DS, but was really floppy after the convulsions." The subtext the whole time as we stroke and fondle her is "Isn't she just the most precious thing you've ever seen in this hospital that deals with kids day in and day out?" Fancy us being so lucky as to get her in life's lottery?
In we go through the doors I have been before - the first time was just after Hannah's heart surgery - she was safely ensconsed in the 'heart ward' after finally being released from PICU. We were there with the other. My strong, brave Kit. I remember everything. The drs faces. We are taken to a bed diagnolly opposite to where we were taken that day over 3 years ago when a screaming, feverish Kit was given a diagnosis of meningitis. Since then we have been there for dehydration but that is all. Now we sit with our precious bundle. A nurse comes in. She is friendly and seems to have had some training in the irregular. "I wouldn't have known if I hadn't read it in her notes." she says. We've heard it before of course. So what? We smile and nod, yes we have heard that before. Why once there was a doctor who asked us if we had had her diagnosed... she definitely does... We talk about their first three months - our warrier stripes, demanding her sympathy, respect, care and understanding - these are our precious twins and they shall NOT be trifled with. We are veterans.
We tell the doctor when she comes with her gentle manner what happened. She asks us a few times - so as to get our stories right. I don't mind. I just want to emphasise how important Hannah is. Can't she see how special this child is???????? She sees the lethargy but seems to underestimate it. Later when Hannah has had a sleep and is carreering down the halls of the emergency and the desk nurse at her station is so eager and quick to ask whether this patient couldn't go and have lunch with her father (who is chasing her at the time!) I take the chance to say to the dr - see - this is what I meant - she was not her usual dollard self this morning - this is the spirited little minx we know and love ...Can't you help her? Isn't she gorgeous?
Before those moments though there is the lethargy. In the extreme. There is sleep, with twitching. There is a dr trying to find a vein for a blood test. Han gets hysterical. She is tired and not herself. She vomits. Her father steps in and tries desperately to be 'in control'. His precious daughter. He soothes her and holds her steady. I sidle to the corner where my handbag is for a hanky to surrupticiously wipe my tears. In that canula I see my dying mother, my dying 3 month old daughter and then her twin with his meningitis. I hold back the tears as best I can.
She sleeps. Wakes well. We watch the dramas, the love unfold around us until we are able to go. I have my instructions. Letters for her pediatrician and her GP. Life doesn't return to normal however. Not yet. It nearly does today. And then the phone rings.
Da Vida rings - a dr. He asks how Hannah is going. She's great I say. She has been happily playing with her friends all day and now she is building with her lego. That's good he says in a surprised voice. The culture of blood we are growing indicates a bacterial infection - staf lococi - it must be a skin contamination in the sample. Yes - we talk a bit more. If she has a fever - yes I will bring her straight back in. I go to bed and cry. I am overwhelmed. I love her too much.
I recall a drive home 5 years ago. I was trying to explain to my loving and caring DH why it was that not having children was like for me. I came up with something like - it is the centre of how I see myself, of who I am. If I am not a mother, who am I? - it was clear that if chilsren were not going to be part of our life together that I would needed counselling. DH in his love and compassion tried to understand but it wasn't until the twins were born that he would totally get it. He said so.
Last night as I cried myself to sleep, I thought of this. Kit's writing. His world. It hangs above my pillow, a gift for me. Hannah, Kit, Mum, Dad.
Tomorrow is my first day back at work after the long summer holidays. I can't not turn up. I am so blessed with fantastic friends. One offered today to look after Han if need be on Monday. So after dinner tonight I rang her. I reached out to her. Please. I'd love it. I trust you with my most precious and vulnerable - I don't even have ot say it really she knows. Childcare is lovely but I want someone who loves just her for the day - who will run their hand across her brow regularly to see if there is a fever. Who will call us straight away and who knows that in our great love and our great fear - we will then step in. Privileged to be her parents. Forever grateful. As DH said tonight - the only thing he regrets is this. The fear of losing her. I guess he meant before the course of her natural life. The fear of her being sick. It is the shadow that haunts us.
Thursday, January 29, 2009
The Bells - an Anthem
The birds they sang
at the break of day
Start again
I heard them say
Don't dwell on what
has passed away
or what is yet to be.
Ring the bells that still can ring
Forget your perfect offering
There is a crack in everything
That's how the light gets in.
We asked for signs
the signs were sent:
the birth betrayed
the marriage spent
Yeah the widowhood
of every government --
signs for all to see.
Ring the bells that still can ring ...
You can add up the parts
but you won't have the sum
You can strike up the march,
there is no drum
Every heart, every heart
to love will come
but like a refugee.
Ring the bells that still can ring
Forget your perfect offering
There is a crack, a crack in everything
That's how the light gets in.
Ring the bells that still can ring
Forget your perfect offering
There is a crack, a crack in everything
That's how the light gets in.
That's how the light gets in.
That's how the light gets in.
(extracts from Leonard Cohen)

Guess where I went last night? He was FANTASTIC!!!!!!!!!!!!! I'd go again tonight if I could afford it. Mesmerising, stimulating, fun ... what more could you want. Brilliant. Thanks Leonard for a great night.
at the break of day
Start again
I heard them say
Don't dwell on what
has passed away
or what is yet to be.
Ring the bells that still can ring
Forget your perfect offering
There is a crack in everything
That's how the light gets in.
We asked for signs
the signs were sent:
the birth betrayed
the marriage spent
Yeah the widowhood
of every government --
signs for all to see.
Ring the bells that still can ring ...
You can add up the parts
but you won't have the sum
You can strike up the march,
there is no drum
Every heart, every heart
to love will come
but like a refugee.
Ring the bells that still can ring
Forget your perfect offering
There is a crack, a crack in everything
That's how the light gets in.
Ring the bells that still can ring
Forget your perfect offering
There is a crack, a crack in everything
That's how the light gets in.
That's how the light gets in.
That's how the light gets in.
(extracts from Leonard Cohen)
Guess where I went last night? He was FANTASTIC!!!!!!!!!!!!! I'd go again tonight if I could afford it. Mesmerising, stimulating, fun ... what more could you want. Brilliant. Thanks Leonard for a great night.
Tuesday, January 27, 2009
Breath
Here is a spoiler from a wonderful book - perfect reading for a beach holiday - and a fantastic last paragraph. I love Tim Winton's writing. It is just beautiful.
"My favourite time is when we're all at the Point, because when they see me out on the water I don't have to be cautious and I'm never ashamed. Out there I'm free. I don't require management. They probably don't understand this, but it's important for me to show them that their father is a man who dances - who saves lives and carries the wounded, yes, but who also does something completely pointless and beautiful, and in this at least he should need no explanation."
This really caught my imagination - so evocative. Of course it reminds me of my own grieving father who I love so very much and brings to mind some of my hopes for how the twins will see their own father one day. Everyone should have a dance that is all their own, one that they can share with their children.
There is a link in the title to an Age review of this excellent novel.
Thursday, January 22, 2009
Monday, January 19, 2009
Beach Holidays
"Off to the beach now, in my car today.
Off to the beach now in my car today.
I'm going to swim, swim in the sea today;
I'm going to dig, dig in the sand today ... "One of Hannah's favourite songs from Beeboppers - and yup - we sure did do all those things and more on our beach holiday.
We just got back from a week down the south coast. We went with some of our favourite people and did lots of our favourite things - a fabulous time. It really helped rest us all I think. DH was 'happily' ironing his shirts ready for his week back at work. I am feeling ok about attending the first funeral since Mums. This one is for the mother of my sister's best friend. My family can't make it because they live far away so I am the 'family delegate'. My heart goes out to the family - she was a lovely woman and I know that my sister has a special love of her - she was a strong loving Irish Australian woman. May she rest in peace and guard over her children from above.



The Three Kits. The brats really love their drawing at the moment. Han often says she's drawing a car or a face or putting one of the family to bed. Kit is enjoying letters. He is copying lots of words from one of their nursery rhyme books. This one of three children - he later added 'k' to each one's tummy - hence the three Kits.


It isn't a beach holiday in Australia without some beach cricket. The big kids, their parents and my DH loved it. The brats had a wee turn too and they liked it.

There was a playground near one of the beaches...
Spoon people playing chasings...
The bigger kids with a little help from the littlies made us all pizzas for dinner - delicious!
WIth the other kids all making pizza - Kit and Hannah weren't going to be left out. They helped with the pizzas and then we made some chicken soup together. That night's dinner was the best all week - and I can promise you the other nights were a gourmet affair - but this one - the cooks were just so proud of themselves!
This image makes me a little sad. Silly really - Hannah is playing Articulate - a pretty good game that the older kids brought with them. She got the board and set it all up herself - essential to the game is reading and then using a variety of other words to help the other players guess the word on the card. I know she'll read and her vocab continues to grow but still it made me sad. DH thought it was gorgeous though and took this picture. I guess it reminds me of school. The brats start preschool 2 days a week soon. Hannah is SO excited about it - poor darling has no idea what she's in for really. God I hope she isn't disappointed too soon.
Check out the exhileration on B's face - just fabulous!
Off to the beach now in my car today.
I'm going to swim, swim in the sea today;
I'm going to dig, dig in the sand today ... "One of Hannah's favourite songs from Beeboppers - and yup - we sure did do all those things and more on our beach holiday.
We just got back from a week down the south coast. We went with some of our favourite people and did lots of our favourite things - a fabulous time. It really helped rest us all I think. DH was 'happily' ironing his shirts ready for his week back at work. I am feeling ok about attending the first funeral since Mums. This one is for the mother of my sister's best friend. My family can't make it because they live far away so I am the 'family delegate'. My heart goes out to the family - she was a lovely woman and I know that my sister has a special love of her - she was a strong loving Irish Australian woman. May she rest in peace and guard over her children from above.
The Three Kits. The brats really love their drawing at the moment. Han often says she's drawing a car or a face or putting one of the family to bed. Kit is enjoying letters. He is copying lots of words from one of their nursery rhyme books. This one of three children - he later added 'k' to each one's tummy - hence the three Kits.
It isn't a beach holiday in Australia without some beach cricket. The big kids, their parents and my DH loved it. The brats had a wee turn too and they liked it.
There was a playground near one of the beaches...
Spoon people playing chasings...
The bigger kids with a little help from the littlies made us all pizzas for dinner - delicious!
WIth the other kids all making pizza - Kit and Hannah weren't going to be left out. They helped with the pizzas and then we made some chicken soup together. That night's dinner was the best all week - and I can promise you the other nights were a gourmet affair - but this one - the cooks were just so proud of themselves!
This image makes me a little sad. Silly really - Hannah is playing Articulate - a pretty good game that the older kids brought with them. She got the board and set it all up herself - essential to the game is reading and then using a variety of other words to help the other players guess the word on the card. I know she'll read and her vocab continues to grow but still it made me sad. DH thought it was gorgeous though and took this picture. I guess it reminds me of school. The brats start preschool 2 days a week soon. Hannah is SO excited about it - poor darling has no idea what she's in for really. God I hope she isn't disappointed too soon.
Check out the exhileration on B's face - just fabulous!
Friday, January 09, 2009
Holidays
Yesterday we drove up the coast to have lunch at a friend's house - they have 3 gorgeous girls (including a 'big Hannah'). It was a lovely visit. Kit managed to best the Dads at Wii golf (which he's never played before) and hannah made countless cups of tea for J - our host. Then today I ahd a couple of friends visit - special needs Mamas. So we had 3 little girls with DS and their 3 brothers - all younger (yes I know - but Kit is 1 minute younger after all - and i think that counts!) It was really lovely to see them find their bearings and play together (as well as fight!). I think I am very lucky to have a number of families nearby who are in a similar situation - as we begin our journeys through the quagmire that is NSW special education.
The brats have been enjoying some holiday painting - Hannah has put texta on the loungeroom floor, crayon on the deck and pen all over her legs! Maybe I am crazy to be thinking of taking her to the art gallery to see the current Impressionist exhibition??

We drove up to the northern beaches to my SILs holiday house for the day. It was a blast - great food and a lovely play at the beach. Little brat loved this hammock. She had a BIG sleep in the car and hence was rather cheekily still sneaking out of her bedroom that night. The pic above is after a few failed attempts to get her to settle down and go to sleep in her own bed - I was watching Hamish MacBeth dvds (a Christmas gift) and they did the trick!
The brats have been enjoying some holiday painting - Hannah has put texta on the loungeroom floor, crayon on the deck and pen all over her legs! Maybe I am crazy to be thinking of taking her to the art gallery to see the current Impressionist exhibition??
We drove up to the northern beaches to my SILs holiday house for the day. It was a blast - great food and a lovely play at the beach. Little brat loved this hammock. She had a BIG sleep in the car and hence was rather cheekily still sneaking out of her bedroom that night. The pic above is after a few failed attempts to get her to settle down and go to sleep in her own bed - I was watching Hamish MacBeth dvds (a Christmas gift) and they did the trick!
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