31 weeks

So Claudia is now 17 years and one week old. Her birthday came and went as it always does in a flurry of mid winter mayhem, with friends and relations visiting and staying – cakes, presents, the birthday song and of course “cups of tea” (Claudia- speak for “glass of wine”)

On the night of her actual birthday we were joined at home by my best buddy (Claudia’s Godmother) and her daughter, Claudia’s beloved older sister Rachel and her fiancé and Claudia’s newest friend and support worker Claire and her husband. It was a festive occasion thanks to the disco ball (gift from Godmother – PERFECT!) and the jolly presence of people who she loves most hard.

Claudia feasted on sausage rolls, club sandwiches (thanks Godmother) cup cakes (thanks Godmother) and the most ridiculously huge, sweet, pink, expensive Peppa Pig cake fortuitously found at Fresh Choice that day. She got plenty of hugs and kisses and was full of joy.

I thought about my own seventeenth birthday. I’d been driving for two years – myself and my friends crammed into a 1965 Datsun Bluebird (red) with a bench seat and tolerant suspension.

We were going to parties in the weekends, hooning on the shingly river tracks, camping on our own, driving long distances, drinking Marque Vue and smoking.

I noted in my diary that my best birthday present that year was two packets of Peter Stuyvesant (blue) from a friend (now a GP)

Claudia’s best present was the Peppa Pig toy from Claire and the Cat in the Hat stage show production DVD (National theatre, London – but the same show she’d recently seen at the Court Theatre here in Christchurch)

Her seventeenth year will be nothing like mine. I felt so very grown up and independent.

I was going out with a 2^nd year varsity student and driving down to visit him in the weekends.

Claudia is growing up but independence is, despite well meaning education plans and “life skills” classes, not something we realistically have in her future.

She will always be dependent on other people to dress her, feed her, toilet her, fill her days with interest and fun and, hopefully be kind to her.

As we sat around the table eating chips and dip and sausage rolls Claire asked about Claudia’s birth, seventeen years before. She asked if we had photographs. So I found the book which was started by the Newborn Intensive Care Staff when she was born.

It contains sane information from staff and hectic ramblings from Claudia’s flummoxed parents, stickers, quotes, footprints, wrist tags, incubator tags, ecg leads, a teeny tiny pair of thick fabric “sunglasses” babies under phototherapy lights (for jaundice) wear and the most ridiculously small, doll sized disposable nappy (weight 5 grams) which when folded in sits easily in the palm of my hand. It used to fit my daughter.

The book was quite a shock to see again. There were photos of Steve and me – young – reasonably carefree, with hair that was long and wild and not grey. There were photos of staff which startled me into remembering them for their kindness. Or not. There was my Father’s handwriting, in a heartfelt message of support to his desperately sick newest grandchild.

Someone called “Nurse Janet “ who I don’t remember had written a whole page to Claudia, telling her they tried her off the CPAP for a while, they tried to get her to suck on a dummy to practice for feeding, and how she was finally getting the right numbers lined up on all her monitors.

I had forgotten – or blocked so much around Claudia’s birth.

My waters broke at 29 weeks – not surprising as I was enormous and had been running up and down a spiral staircase in the Avalon studios to the horror of some of the crew.

“when is this baby due?” asked a quiet sound guy – clearly concerned, “I don’t think you should be running up and down those stairs like that”

“I’m fine” I said, “Ive got another ten weeks”

He didn’t say anything else but I still recall the look on his face and it did occur to me he looked about the right age to have been through some pregnancy and childbirth up close and maybe I should slow down.

That night I flew from Wellington to Rotorua – and couldn’t put my bag under the seat in front of me I was so huge.

At Steve’s I had a bath and lay like a heffalump in front of the fire wondering how on earth my skin was going to stretch another 10 weeks worth. In the night my waters broke and it was a swift trip to the Hospital then into an ambulance to Hamilton. I remember the trip and thinking whatever happened next my life would never be the same.

They stopped the labour and put me in a ward where, relieved of all the amniotic fluid I was remarkably comfortable and kept working, marking up scripts and pretending I was fine, just sitting tight waiting for another ten weeks. I was determined to keep working and arranging for things to be couriered. Being 1998 there was even faxing from the ward.

It was calmly revealed to us my baby was a girl, in the breech position, and because of the “double bubble” (blockage between her stomach and small intestine) she would require immediate surgery. Therefore she needed to be in good nick ; when I went into labour there was to be no internal exam, just a calm routine transfer to theatre for a Caesarean. Oh, and in addition there was a 75% chance she would have Down Syndrome.

But the nurses got sick of me in the room at the end doing nothing so when I did go into labour 10 days later the 13 year-old midwife, annoyed at being on the Friday night shift, punished me for not letting her do an internal (the specialists words ringing in my ears to let noone do this ) by telling me she couldn’t tell if I was in labour or not then.

“well, if you won’t let me do an internal….” she trailed off, he unfinished sentence implying I couldn’t really have been in labour, or she couldn’t tell if I was – or maybe that I deserved whatever happened next.

Don’t forget – this was the last day before Claudia – before I grew the balls I’ve got now, before I had enough strength to say “listen babycakes, you need to get me to theatre NOW because something’s not right”

Instead I just squirmed there in agony, having been put in my place – until my luckily visiting friend – who always had balls and had recently attended another friends birth – turned up, took one look at me and immediately gave the emergency signal on my room buzzer. That got them running.

But by then I couldn’t sit in the wheelchair they’d brought me and the whole calm planned thing went right out the window as I was bundled down to theatre in rude panicked haste.

Steve came in then went out, then came in again looking like a freezing workerin a mask and white gumboots , then was sent out again and I was lying on my back signing a paper waiving away everything as my eyes were closing and people were screaming “there’s no time! Hurry! Hurry!”

When I woke up it was all over. And all beginning.

I didn’t pay much attention at the time – but the stats make interesting reading.

She was born at 18.50 (ten to seven) and weighed 1591g – that’s 3 pounds 8.

She had major surgery the next day and thats when the nurses snuck her up to meet me first.

We had our first “cuddle” with her August 3 – 4 days after her birth.

When she did a poo some days later it was quite an event and everyone in the book was very excited. I guess it meant the surgery worked.

On August 21 , three weeks after her birth we went home to Rotorua. Half siblings Rachel and Matt met her for the first time the next day.

On September 10 she reached 2000 gms and had learnt to drink from a bottle.

And finally on September 23 she was allowed to come home.

My Mother had been going overseas. She had planned to trip to come home via Rotorua to be around when my baby was born.

As things turned out she was in Auckland ready to fly out the next day when Claudia was suddenly born. She came down to see Claudia then flew to Europe. When she came back two months later it coincided with bringing Claudia home. Claudia was in hospital for a whole extended European jaunt.

Some stats 17 years on

Still can only drink from a bottle (luckily water bottles are all the rage these days)

Still exciting when she does a poo.

The critical moment where Claudia with shoes is taller than me without has arrived.

She still adores her siblings.

The arrival of “ordinary” Jasper 4 years later was critical for making our complex, wild, crazy family complete. She adores him and he has grown up with a tolerance for diversity, an innate understanding of what inclusion looks like and a sincere love for people like Claudia that can make us weep with pride.

“ Nurse Janet” commented in Claudia’s book – “you are a lucky little girl having such a loving family all ready to help you develop into a beautiful lady – maybe you will do a task caring for babies – whatever it is, everyone will be there for you. Sleep well and happy thoughts surround you – Nurse Janet”

And as I see the handwriting and supporting love from our families and friends in those early days in that book, they are the same family and friend who still do offer such massive support to us.

I still can’t read all the entries in the book and am happy to have a skim. It was all such a shock.

But it was comforting to realize the same people were there then for us as are still supporting us now.

Claudia – and our whole family – is lucky for that invaluable and much needed support.

Jasper’s tribute to Claudia’s 17 year milestone can be seen here

https://www.youtube.com/watch?v=V7uRuIoM7QM