Sick

I am the master of catching vomit. Even my 12 year old son says so and is openly impressed that I can whip in with a towel and have caught, scooped, wiped, rolled and removed the towel with it’s vomitty filling – before you can say “ Roulade Regurgitata ”

I’ve had years of practice with Claudia – who has a pattern of un-wellness which for years and years has followed the same routine.

Her mouth fills with saliva which she won’t swallow despite continuing to attempt to talk, she goes very pale, she clearly wants to lie down and not move or be moved before she has a little cough and then next up comes the previous meal, largely un-chewed before she closes her eyes and goes to sleep.

It’s just like escorting a certain ex-flatmate home from the Captain Cook on a Friday night at Varsity in Dunedin. But unlike my old mate I can’t threaten her with being left under a hedge unless they get up and neither does she wake up the next day, jump on to her scooter to fetch some potato and gravy from KFC , often washing it down with a beer.

No, despite her youth and clean liver, she generally stays down and out for three days.

She sleeps and sleeps, waking only if we insist on washing or changing her (when the motion will generally make her throw up again) and then – on the third day – she rises!

Its a regular miracle at our place.

We’ve become adept at injecting 10 ml of water at a time down her reluctant throat to keep her hydrated, we’re skilled at putting panadol up her bum when she won’t take it any other way, catching the vomit, whipping sheets and nappies in and out from under her and tucking her back in quick smart.

Never underestimate the strength of a sick disabled teen who doesn’t want to be moved or interfered with.

We have bursts of frantic energy around her cares then long, silent periods of quiet where we feel guiltily amazed at how peaceful and easy she is when she’s sick.

If she doesn’t rise again on the third day we know there’s something more afoot and will seek outside advice or take a trip to hospital.

But despite the cause (usually unknown – a cold? A bug? A reaction?) her physical response has always been the same – purge, shut down, sleep it off with a three day resurrection.

But things have changed since puberty – high pitched moaning (f#) began to accompany the routine and we noted a regularity of symptoms which often coincided with her period.

In Geraldine she was getting the Depo Provera – always a terrible mission of terrified nurses with needles, terrified Claudia thrashing about and being held down by other people roped in to help who were terrified in equal measure of the needle and Claudia and her phenomenal super-strength in a fight.

It was of course all absolutely stupid and the wrong thing to be doing.

The Education team in Christchurch were horrified that she was even on Depo Provera and said all the girls in the unit at her school had a mirena.

Yes it would require a general anesthetic to insert it, but it would offer 5 years of minimal/ no periods and in addition help even out those hormonal moods and frustrations and migraines she was experiencing. Great! Except for the part about the general anesthetic.

And the logistics of having to first find a GP in Christchurch (not easy) who was prepared to take on Claudia (really not easy) plus make immediate referrals to three other teams, surgical (to assess her hernias) dental (to get a decent tooth examination ) and gynecological (for the mirena)

My mad idea was to try to get the three departments to liaise and co-operate to best serve the needs of the patient, by possibly having several procedures under a single anesthetic.

We waited optimistically for the 2 months, 3 months, 4 months for the referrals to the specialists to come up and things ground to a bit of an awkward halt when the surgical team, after examining her and her 2 sizable hernias for several seconds, declared they “probably” weren’t hurting her and they didn’t think they would operate.

Dammit – that left Dental to come to the party. Luckily the sympathetic dentist said that despite evidence of her teeth having been very well scrubbed indeed (big ticks to Mother) she would schedule a hospital appointment to have a good clean, repair and protect under a general. Hooray! Now the gynecological team could confirm they’ll whip in while she’s under and insert the mirena. Hopefully within 9 months of that first referral to try to sort it out!

In the meantime her periods have been spasmodic and not any real cause for concern. But the frequency of her periodic illness has been increasing to the point where she’s now having a vomit and a lie down every couple of weeks.

She can’t tell you where it hurts and will point to any random part of her of you ask – elbow, leg, tummy, – but she will say “tired, so tired”.

Often it starts on a Friday – at the end of a busy week. I know she’s working hard on the treadmill at school. She also had swimming on Friday but was fine after school then suddenly went down around 5. She was back up on Saturday – eating normally by Sunday – but I decided to test my theory that it is something to do with fatigue.

So I made us all go for a gorgeous spring walk in Hagly Park yesterday afternoon.

After we came home, she said she was hungry, ate early, then suddenly got dribbly, wanted to go to bed, “so tired” and sure enough a couple of hours later the vomiting started.

My friend Jenny (a nurse) happened to be around enjoying a late afternoon sunny Sunday glass of wine and saw Claudia’s decline. She has also been aware of the increase in incidents all year.

Have you had her iron levels checked” she asked casually.

No. That would involve a blood test and that would involve needles and that would require some sort of anesthetic and we’re still on the list to get all that done and oh my god how did I not think if this?!!!

Could it be that all Claudia’s illness is in fact due to her being a teenage girl who is more physically active now than she ever has been in her life and who doesn’t eat much steak or kale?

She doesn’t eat sweets, she rarely asks for a snack – she eats big meals but they’re easy to chew things like weet bix and toast and sandwiches and sausages and mash.

I feel terrible ; she’s a functioning woman on a toddlers diet!

Because she requires feeding and doesn’t chew well and doesn’t take control of her diet like other stroppy teens might, wolfing down pizza and gummy bears, I’ve treated her like a child!

She’s probably constantly faint and needs some sort of miracle vitamin cocktail.

Steve had the realisation (as he dealt with a round of chunder) that this isn’t looking after a sick kid, it’s looking after a sick adult.

She’s still our daughter – but not a child. She’s a grown up.

We are the ones suddenly growing up here ; she’s been doing it for years and we have failed to keep up. Her childhood is over – it’s a whole different ball game and we’ve only just figured it out.

But I’m on it now.

As she dribbles soundly into my pillow today I’m filled with hope that we may finally be on top of something here. I’ll ask for blood tests while she’s getting her teeth and mirena done and in the meantime I’ll up the energy foods and vitamins.

I welcome any suggestions or advice.

With the exception of handling liver, thanks sister Jane!

Sorry. Ain’t going there.

lists

I am going away for the weekend. Way away – on a plane .

It won’t be easy for me to rush back should things collapse and there are tears or tantrums.

Three whole nights away – with friends who don’t have children. It will be blissfully strange. On previous visits I’ve been known to cause howls of disgusted outrage when I’ve mused…”I have nothing to do…does anyone need their arse wiped?”

Because it is so very shocking to go from managing another whole person in addition to yourself – to not. .

Everything we parents need to do for ourselves in a day, we also have to do for another whole person.

And if we can’t do it actually for them, we have to be there, remembering they need to do it, encouraging them and being over excited if they do it.

And now I have three and a half whole days and three whole nights where the only person I have to dress and feed and wash and move about is myself. I won’t have to get anyone else to the loo except myself and I won’t have to wonder if anyone else is too hot or too cold or requires a drink.

I won’t have to be on alert for where the pets are in relation to the clammy hands and strong tugs of a certain other person. I won’t have to be on hyper-alert to what’s happening just outside our vision (in case there’s a sudden wrong noise) or if there’s anything just coming in to view that we might rather avoid.

I won’t have to time things according to other things or stagger my attention.

I should sleep. But I won’t. Like the past few nights I’ve been blinking into the clock at 3am, 4 am, 5 am…my mind making lists about the lists I should be making to support the army of support and instruction I’m leaving behind.

The timetable which needs a backup timetable in case anything doesn’t happen in the expected way and therefore needs a different plan. The fact that everybody remotely related to this household needs to know everybody else’s routines and expectations and phone numbers.

The fact that so much of what we do is not easy to know other people need to know it.

Like 2 weetbix with milk and sugar then two pieces of toast with two crusts cut off but cut into three strips with butter and jam. Then rolled up into little jammy rolls as each individual one is popped into her mouth.

That way everyones fingers remain cleanish and we don’t end up with jam in our hair, our clothes, the iPad, the table and on all the furniture between the table and the bathroom en route to wash our hands afterwards. Oh and by the way the WeetBix needs to be fed with a teaspoon. Yes it does matter.

Because while Claudia has a Father and he’s a perfectly good and loving and funny and in many ways attentive Father – he’s not such a hands-on Father as he used to be.

With him working full time outside the home and me at home full time outside school hours – it has quite reasonably been me doing all the “Claudia”. That’s the way it works for us and that’s the way Claudia has grown to prefer it.

The relentless shouting “Mum! Mum! Mum”” when I’m in the house becomes “where’s Mummy? Where’s Mummy? Where’s Mummy?” when I’m not. It’s a bit loud and boring for all of us but I’m certainly more used to zoning it out. Good tempers will be tested, and I’m too far away to fix anything.

There are lists about things Claudia needs to stay away for the night, because she will be away for one night. There are lists of things she wants to take away for the night, because if there’s something she decides she wants it’s easier if she has it. There are things we pop in just on the off chance someone might need or want it. Dvds, books, soft toys, a train set. Just in Case.

In the back of my head I hear what you hear – I get that I sound like a deranged overly controlling martyr who can’t trust anyone to do anything the right way – her way – .

This plus the fact that I am writing this as I simultaneously prepare dinner (2 dinners – of course) – try to catch up with Steve over broken washing machine, tell Claudia to shush as she shouts at me that she wants to go on a school trip (accompanied by train noises from the iPad) , as I text friends old and new, fold washing , link up Family (in Oz) with friends (in Oz) so they can meet for a gin later tonight (and imaging them on warm beaches, together without me and a shouting girl- and feeling envious) . Here’s me in the middle typing messages to both exchanging numbers and addresses – oh- and making lists. I am a demented madwoman who is burning sausages and pouring a glass of pinot gris.

The friends I’m going to see have a calm and sane life – busy and important careers, a beautiful home and a taste for the fine things in life. You’d think I would fall into their sofas, enjoy the verve cliquot and make the most of the break. But it is hard. 17 years of being concerned about somebody else is not easy to switch off and these dearly beloved friends have been known to rudely out me as The Antidote To All Things Fun because of my inability to enjoy the weekend without worrying aloud how things are going at home.

I will try harder this time. I will write the lists and line up the ducks and get to the airport on time.

Then I will stop and be led and make no decisions and carry no responsibility. I will try.

I will try.

And way in the dusty recesses of my brain I know that everything here will be ok.

Because Claudia is with adults who are typically less distracted than me.

That if everything isn’t just as I would do it, it’s not only OK but probably good for her.

That Daddy’s different little ways and tricks and routines might just be more fun and in the end probably more efficient.

I should just relax and know once I’m gone, I’m gone and there’s nothing I can do.

It’ll be different. But it will be fine.

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 2nd 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