Living a rare life

I love someone who is rareThe 28th of February is Rare Disease Day. So in the spirit of the day, I’m going to raise your awareness about what it is like living with a child with a rare disease.

In fact, Lil Z is so rare, she hasn’t even been diagnosed yet.

In some ways, it makes no difference that whatever chromosomal disorder Lil Z has is so unusual that we haven’t been able to identify it yet. Diagnosed or undiagnosed, rare or common, at the end of the day, it all comes down to Lil Z and not a label. A label wouldn’t change how we feel about her or what we want her to achieve. Nor would it change what her doctors and therapists do. I like that Lil Z is treated just as Lil Z without assumptions on what she should be doing or what will happen next.

That said, it means her life is completely unpredictable and unknown. No one has told us that she won’t walk or won’t talk or that her life will be limited, not because those things aren’t possible – they all are – but because no one knows. Forewarned is forearmed and we aren’t forearmed because no one can warn us of what is to come. Because whatever she is rare.

Even if we had a diagnosis, there is no guarantee that any of our doctors or therapists would know what that diagnosis means. We are into the realms of things so rare that there may only be a handful of children in Australia – or anywhere else in the world – diagnosed with the same condition.

So, we stick with our clinical diagnosis of atypical Rett Syndrome. Most medical professionals are aware of Rett Syndrome, and Lil Z exhibits all the primary symptoms – repetitive hand movement, reduced eye contact, mobility problems, non-verbal, breathing problems, slow head growth, swallowing difficulties, small hands and feet, teeth grinding, constipation, scoliosis, and abnormal sleep patterns, to name but a few – so it is a useful label to give a snapshot of Lil Z’s issues when we meet someone new.

And it gives me a community to cling to. Both the Rett community in Queensland and the CDKL5 community globally have been such a huge help with support and advice. Truly, Facebook is a godsend for those of us with rare children.

But outside the special needs and medical worlds, most people have never heard of Rett Syndrome or CDKL5. And this is another place where rare is difficult. People want to know about Lil Z and I still don’t have a set answer. Someone the other day asked in conversation if Lil Z had cerebral palsy – which is a respectable guess, really – and both QB and I nodded vaguely and mumbled “something like that”. A pathetic example of promoting public awareness, but sometimes you’d rather just make friendly small talk instead of educating the public on Lil Z’s possible diagnoses.

It’s interesting because before Lil Z was born, when the doctors were arguing over whether or not she had an enlarged ventricle in her brain, the doctors kept mentioning ‘soft markers’ and wouldn’t rule out Down Syndrome. DS was the ONLY disorder they ever mentioned to us. After she was born, it was clear that she didn’t have DS and everyone heaved a sigh of relief and declared her healthy. Once the obvious had been ruled out, no one thought that it could be something unusual, something rare.

Similarly, when we first got the devastating news that there was ‘something wrong’ with Lil Z, the paediatrican declared it was cerebral palsy – despite there being no evidence of any damage occurring to her brain during pregnancy, birth or up to that point. Again, it was choosing the common over the rare.

But Lil Z is proof – rare does happen.

The other day, Lil Z was sitting on my lap at the table while Vegemite had her dinner. Lil Z had been rolling on the floor earlier and somehow managed to dribble all over the shoulder of her t-shirt, which was soaking wet. Teasing her, I told her that she had “soggy shoulder syndrome”.

Vegemite looked up from her spaghetti with a ‘eureka’ type expression on her face. “Did you find out that’s what she has, Mummy? Does Z have soggy shoulder syndrome?”

Yes, we are rare indeed.

 

Time for “the talk” again

The days have passed in something of a blur since the girls started school in January. We’re slowly easing back into our school year routines and I even managed to do the double school drop off without anyone being late yesterday! But the one thing that I nearly forgot to do was have “the talk” with Vegemite’s teacher. So, I’ve scheduled a meeting and will do it after school this afternoon.

“The talk” is telling Vegemite’s teacher about Lil Z and explaining the impact it has on Vegemite – which could carry over into the classroom. During Vegemite’s first year at school, it didn’t even occur to me to have the talk… and by the time I realised I probably should have said something to her teacher, it was too far into the year, and I didn’t know how to introduce the subject. I’m sure her teacher noticed that Lil Z was “different” during school drop off and pick up, but she probably didn’t know how to raise the topic with me, either. So, it ended up as a bit of an elephant in the room.

Last year, I was determined that things would be different. So, I arranged a meeting with her teacher. It started off a bit awkwardly – mainly because all the eloquent and intelligent things I had intended to say flew out of my head the moment we sat down. But I stumbled through and managed to get my point across.

What I want Vegemite’s teachers to understand is that Lil Z changes things for Vegemite.

On a very basic level, Vegemite might be dealing with things that would alarm and terrify other kids her age, before she even gets to school in the morning. For example, last week we had barely turned the corner on our way to school when Lil Z started to have a seizure. I pulled the car over to the side of the road, but before I could even make it to Lil Z’s side of the car, Vegemite was out of her car seat and in full seizure-response mode – sick bag in one hand and holding her sister’s hand in the other. Z came out of the seizure just before the 5 minute mark (when we would have to give her emergency medication to stop it) but was very unhappy and immediately started crying and screaming. I continued the drive to school while Vegemite held her hand and watched for signs of more seizures. When we arrived, Z was still inconsolable, so I dropped Vegemite outside the school instead of walking her to her classroom. It occurred to me that it was a rotten way for a six-year-old to start her school day, but there was nothing I could do about it…

It also means that Vegemite is dealing with more worry and stress than most kids her age. It doesn’t happen as much as it used to, but her sister still gets taken away in an ambulance; she still gets admitted to the hospital (which means that not only Lil Z disappears, but I do as well). And as she gets older, Vegemite becomes more aware of the risks. When Lil Z had pneumonia earlier this year, Vegemite asked me if she was going to die. I told her no, and we discussed how children like Lil Z did sometimes die of pneumonia. The conversation ended with me promising to tell her if Lil Z ever became so ill she might die. Not the kind of promise that most parents make to their six-year-old. But I hoped that if she knew we would tell her, she wouldn’t have to worry as much every time her sister was sick.

I am also worried that Vegemite could be teased or bullied because of her sister. We chose to put her in a small school with an active parental community because   we hoped that once the other children and parents met Lil Z, she would simply become “Vegemite’s sister” and wouldn’t always attract stares and questions. Although it worked well last year, when Lil Z came along to drop her sister at school every morning, but as she gets older and mobility becomes a greater issue and now that Lil Z is attending her own school, she isn’t around Vegemite’s school as much as she used to be. And as she gets older, her disabilities become more apparent.

Last year, after my chat with Vegemite’s teacher, there was an “incident” in which a boy made fun of Lil Z in front of Vegemite. The teacher immediately intervened. When I asked Vegemite what he had said, she replied “he made fun of her hair”. I don’t know if this was really the case or not, but if it was, well, the kid might have a point. Lil Z has the craziest hair I’ve ever seen…  But it was good to know that her teacher was willing to step in straight away.

Letting Vegemite’s teacher know also opens up the door for Anya actually talking about her experiences as a sibling of a child with special needs with her peers.

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Gracie, the epilepsy awareness bear

Last year, she gave a presentation to her class on Epilepsy Awareness Day. I’m not sure it was terribly educational as such (there was a lot of focus on the fact Epilepsy Action Australia had given her and Lil Z teddy bears), but it was good experience for her.

It is important for children like Vegemite to be able to explain their sibling’s disabilities – in fact, it is recommended that you practice a response to the question “what’s wrong with your sister/brother” with them, so they are able to respond confidently. Vegemite explains most of her sister’s disabilities in terms of epilepsy – which is fine because Lil Z doesn’t have a conclusive diagnosis of anything else.

I also hope that by discussing Lil Z with her teacher, she can reinforce in class what I try to teach her at home: that she needs to treat Lil Z with respect, love her as she is, and to not be embarrassed by her. The first two are easy with Vegemite right now – she is a loving and caring sister, who only occasionally has bouts of sibling jealousy. But as she gets older, she does get embarrassed – especially over the fact that her sister is prone to vomit anywhere at any time. It’s tough – especially since it sometimes embarrasses me too…

So, I’ll go into the meeting with her new teacher this afternoon with these goals in mind. And hopefully, even if words fail me again, I’ll be able to explain what I want to achieve. These conversations are never easy for me – even more than three years into our special needs journey, I still find it hard to talk about Lil Z in a non-clinical way. I can talk endlessly to doctors and therapists – and obviously writing about her doesn’t bother me – but it is hard to go into a conversation like this completely “cold”. And I know it isn’t particularly easy to be on the receiving end either.

Still, I’m hopeful that this year is easier than last year. And perhaps by next year, I’ll have my speech memorized. Because I’ve got many more years of “the talk” to go…

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A spoiled girl

Who wouldn't spoil a cutie like this?

Who wouldn’t spoil a cutie like this?

One thing that people don’t understand when they meet Lil Z  for the first time is that she actually has boat-loads of charm. But when you first meet her, it isn’t always evident. She rarely looks people in the eye – and it is even rarer for her to look at someone new or that she doesn’t know very well. Instead, she’ll give you a sidelong look and then refuse to look at you again, no matter how friendly and engaging you might be.

In fact, it has very little to do with you as such. Her CVI (cortical visual impairment) means she doesn’t often look directly at anything – and faces are particularly difficult to interpret if your vision is poor. And if you’re standing far away, its unlikely she can see you very well, but no one likes a stranger invading their personal space, so she’ll object if you get up close and personal. In short, you can’t win when you first meet her.

But getting to know Lil Z is rewarding. It just takes a bit of time for her personality to shine through. She isn’t like her big sister, who boldly walks up to new people and starts a conversation. She makes people work to get to know her, and then rewards them for their efforts.

The problem is that once she’s charmed you, she knows she’s got you. And that she can get you to do anything for her. Mostly, she charms through affection. No one can resist a Z-cuddle. Which is why she’s so accustomed to sleeping in her carers’ arms (she much prefers a nap on someone to a nap in bed). It is also how she manages to get out of therapy sessions: she rubs her eyes and lays her head on their shoulder and few therapists have the heart to force her to go on with her exercises. Her male therapists seem particularly vulnerable to this ploy – she’s got them totally wrapped around her finger.

This charm – and how she uses it to manipulate people – is one of the few means Lil Z has at her disposal to get her own way. Being unable to communicate or to control her body to be able to stand, walk or even sit, she is almost always at the mercy of other people to decipher and meet her needs. She can’t eat – or ask for food – when she’s hungry. She can’t request a particular toy, cartoon or activity. She can’t ask for help when something hurts or when she needs a clean nappy.  With her back brace on at night, she can’t even roll herself over when she’s tired of sleeping in one position. Of course we are actively working to improve her communication skills so she can tell us what she wants, but so far we haven’t made much progress. Instead, she relies on those caring for her to figure out what is bothering her and make it right.

It must be unimaginably difficult and frustrating being Z.

However, Lil Z has expanded her repertoire of manipulative actions beyond just charm and cuddles. She has learned that particularly with her parents, the promise of a cuddle doesn’t always work. Not that we don’t love a cuddle with Lil Z, but we simply can’t spend all our time doing it. So she invented ear scratching and hair pulling.

Sometimes these actions are her sensory seeking behaviour or Lil Z getting caught up in repetitive actions that she’s unable to stop. But sometimes, these are also used to get her way. And they are effective. We may be able to pass up the Lil Z charm, but it is impossible to ignore her when she is trying to remove her ears with her fingernails.

Let me give you an example. Last Saturday, we went out for lunch. Lil Z was  in her special needs pushchair, right up at the table with the rest of us. At first she was happy sitting there and looking around. But she quickly got bored. And she doesn’t particularly like sitting in her pushchair – especially when there is a warm lap nearby. So, right as our burgers arrived, she started scratching her ears.

I tried to distract her by holding her hand. This sometimes works – especially if she’s caught up in the repetitive action of ear-scratching – but this time it didn’t. And anyone who has ever tried to eat a ‘gourmet burger’ with one hand will also know that it wasn’t working particularly well for me either.

So, Lil Z got her way. I took her out of the pushchair and held her on my lap. And she was happy. I was less so, since I still couldn’t eat my burger, and was left nibbling on my chips until QB finished his burger and held her while I ate.

We do this a lot (giving in to Miss Z, not eating burgers), and I realise that it is giving in to her manipulation. If anything, we are encouraging her to scratch her ears by teaching her that it gives good results.

When I picked her up at school the other day, her teacher commented that several times she’d been unhappy sitting in her pushchair and had begun scratching her ears. She asked how we deal with it when it happens. I was rather embarrassed to admit that we usually gave in to her demands, and that she usually wanted to sit on someone’s lap. Turns out that was exactly what the teacher had done when Lil Z got scratchy during music therapy.

The teacher also commented that it is so hard for Lil Z to communicate what she wants, that maybe it isn’t always a bad thing to let her have her way.

It is an unusual situation. In most situations, constantly giving a child what they want would be considered spoiling them. I try very hard to get Vegemite to understand that she can’t just demand something and get it. But then, Vegemite is demanding lollies or Barbie dolls or some toy that she saw on tv. Lil Z is demanding things that Vegemite just does without even thinking about it. So, is it spoiling her to give her her own way, or just giving her a bit of control in her own life?

Most of the time, I don’t worry that I’m spoiling her. Responding to her demands gives her a little bit more control, encourages her to communicate with us, and makes everyone just a little bit happier most of the time (after all, who isn’t happier after a Z-cuddle?).

Lil Z also has so much to deal with in her life, that giving her her way only seems fair. She is dealing with so much stuff medically that indulging her preference to sit on someone’s lap rather than her pushchair seems almost irrelevant. Although I do worry about what will happen when she gets too old to sit on my lap – or will I be sitting in the burger restaurant holding a 15-year-old on my lap in 12 years time?

It also makes me wonder how far we go in giving her control. She hates therapy – mainly because she hates being made to do things that she doesn’t want to do. Her therapists have told me that I often let them push her farther than other parents, who intervene when their child starts to seem unhappy. Then again, if I intervened every time Lil Z seemed unhappy at a therapy session, we’d never get anywhere. So, I let them push her.

We have one physio in particular who doesn’t mind being the ‘bad guy’ and pushing Lil Z out of her comfort zone. She is immune to Lil Z’s charmingly manipulative ways of escaping exercises. This may make her sound mean, but she’s not – she is just challenging Z in new ways. Lil Z doesn’t like new and doesn’t like being challenged, but if I let her stay in her comfort zone, then nothing will ever change. So, I let the physio do her exercises and ignore the grizzling and grumping coming from Lil Z each session.

But the great thing about letting the physio be the ‘bad guy’ is that I get to play the ‘good guy’ afterwards, giving her cuddles and kisses and generally rescuing her from the big, bad physio-terrorist. So, maybe we do spoil her a bit, but at the end of the day, I think I’m OK with that. And I know Lil Z definitely is…

 

School shoes

The new shoes

The new shoes

In Australia, the school year ends in early December and the summer holidays run until after Australia Day in late January. So, here we are getting ready to go back to school. Vegemite starts Grade 2 next Wednesday and Lil Z returns to pre-school the following week.

In past years, the start of the school year hasn’t exactly been my finest hour of motherhood. The first year, it was a shocked “we have to buy all the books and school supplies?! That’s normal in Australia? Errr… no, we didn’t get the letter…” followed by a dash to the school shop. The second year, I knew what I had to do, I just missed the order deadline by a few days, which meant Vegemite had to start school without anything (apart from some cobbled together school supplies)… again.

This year, I ordered everything early. Even book covers (if anyone can explain to me what is so necessary about covering all your child’s notebooks – not text books, but notebooks –  in contact paper or plastic covers, I’d love to know, since it seems like a total waste of time to me. But hey, who am I to deny Vegemite her covers?). Even name labels have been designed, ordered and arrived. Even the special new water bottle I promised Vegemite months ago that I would buy her for Grade 2. Vegemite, showing the school-loving tendencies of one of her favourite book characters, Hermione Granger, has enthusiastically labelled everything, organised her pencil-case (several times), and started to review some of her books (enthusiasm for running writing is high – I had to take her handwriting book away to prevent her from starting early on it). And now the whole lot is sitting in a box in the living room, awaiting delivery to the school on Tuesday.

Neither Vegemite nor Lil Z has grown enough that they need new school uniforms (yet), so we’re good to go there, too.  Everything is even washed and hanging in their closet.

That left only one last thing to sort out: school shoes. Vegemite needed a new pair of black mary-janes for her formal uniform and Lil Z needed a new pair of trainers.  So, when we had a few hours to kill on Thursday – and everyone was desperate to get out of the house because it has been raining all week – I decided to load everyone up and head to the mall for a bit of shoe shopping.

We went to a shop straight away that I knew carried both trainers and school shoes. Once upon a time, I could wander for hours in the mall with a contented Lil Z asleep in her pram. Those days are over, and she now usually gets cranky pretty quickly – especially if you’re not moving. So I wanted to get the shoes sorted as quickly as I could.

When the salesperson called our number, I explained what we needed for both girls, and suggested we start with Vegemite, since she was “the easy one”. There isn’t that much variety in black mary-jane school shoes – buckle or velcro and a few different brands with slightly different fits is about as exciting as it gets. Within five minutes, Vegemite declared that she wanted the same brand as last year, but with a buckle instead of velcro. Sorted.

Then, things got kind of wonderful. The salesperson knelt down beside Lil Z’s stroller and said hello, introduced herself, and asked what kind of shoes Lil Z wanted. I am so unused to people making the effort to talk to Lil Z, that I almost thought she was talking to me. Then I worried that she didn’t realise that Lil Z was non-verbal.

Of course, Lil Z glanced at her then looked away and rubbed her eyes (her favourite defence mechanism). This is often when people give up with Lil Z. She rarely gives anyone a direct look – not only because she is shy around strangers, but also because her visual impairment means she can’t see as well if she is looking straight ahead as she can out of the corner of her eye. But the salesperson continued chatting to her, asking about school and what shoes she would need.

I was kneeling on the other side of Lil Z by this time (realising how unusual it is for everyone to be on her level, rather than talking over her head) and explained what she needed.

The salesperson then measured Lil Z’s feet – getting down on her level and explaining what she was going to do before doing it and chatting away to Lil Z (and Vegemite, who wanted to help with the measuring process). Then she disappeared off and returned with two different trainers she thought might work for Lil Z.

She showed the first pair to Lil Z and then slipped them on her feet. Lil Z responded by curling her toes under, but the woman fastened the shoes and sat back, waiting for Lil Z to relax. After a moment, the defiant toe curling was forgotten and we could check the fit. Then she repeated the process with the other pair, still including Lil Z in the conversation, despite getting very little encouragement from the girl herself.

We decided on a pair of Asics that were a lovely shade of raspberry with neon yellow detailing but then Vegemite asked if they came in blue, saying that Lil Z’s favourite colour is blue. This isn’t strictly true – Vegemite’s favourite colour is blue (thanks to “Frozen” for weaning her off pink) – but whatever. So, off she dashed to find a blue pair. I wasn’t convinced with the blue, so the salesperson suggested we let Lil Z decide. She held one of each colour in front of Lil Z and waited for her to respond. Unfortunately, no amount of encouragement was going to get Lil Z to stop rubbing her eyes and show a preference, so I finally chose the raspberry ones – arguing they match perfectly with her Kimba stroller.

It was such an ordinary thing to be doing: probably anyone with a school-aged child in Australia has, or is going to, buy school shoes. But the salesperson reminded me something that I often forget when I’m out and about with Lil Z – that she needs to be included, too. She is non-verbal and doesn’t like to interact with strangers, but that doesn’t mean she shouldn’t be given the opportunity. Nothing will ever change if we don’t keep trying.

It is one of my greatest faults with Lil Z sometimes. I’ll be busy and distracted and instead of talking to her, telling her what I’m going to do, and maybe even giving her a choice in the matter, I will just do… Her nappy seems wet? I’ll just roll her over and start to change her, without bothering to tell her what I’m about to do. Lunchtime? I just hook her up and she’s away – all without me saying a word. Bath time? I’ll often just carry her into the bathroom and start undressing her – she figures out what is going on based on our routine, rather than anything I’ve said.

Still, I’m trying. We do the sign for ‘bath’ together before she gets into the bath, and the signs for ‘finished’ and ‘bath’ before I get her out of the bathtub. I’ve also started chatting with her when she’s sitting in the kitchen and I’m preparing dinner. Just because it must be really boring sitting in a chair watching someone else cook in silence…

I don’t know what goes on in Lil Z’s mind, but QB and I are certain that there is more going on in her brain than most people give her credit for. Just because her body doesn’t cooperate, it doesn’t mean she doesn’t understand what is going on around her. If there is one thing I never, ever want to be guilty of doing as a mother of a special needs child, it is under-estimating her abilities. And part of that is making sure that she is included, and not just managed through conversations going on over her head.

I’m grateful that shoe shopping – and an exceptional salesperson – reminded me of that.

Bed-hopping

Two of the bed hoppers

Two of the bed hoppers

Last week, I noticed that Vegemite was looking tired. Not just worn out from a few late nights during her school holidays, but exhausted, with big, black smudges under her eyes. I realised that although she seems to sleep through Lil Z waking up during the night (Vegemite could probably sleep through a marching band parading through her bedroom) she isn’t getting as much good quality sleep as she needs.

This also coincided with discovering that Lil Z has pneumonia. I’m not sure if it has been the pneumonia causing the sleep problems all along – I sort of doubt it. But, the fact that she had pneumonia – and the implications of that on her long-term health – got me anxious.

So, I decided that I would move Vegemite into our bedroom for a night to make sure she had a solid night’s sleep. And that would also leave her bed, in the girls’ bedroom, free if I needed to move closer to Lil Z. How was I to know the crazy chain of events that I would set off, resulting in more bed-hopping that a French romantic comedy.

It all sounded so logical. Vegemite was excited to ‘camp out’ in our room and dragged a spare mattress, some blankets and her vast menagerie of stuffed animals across the hall into our bedroom. QB was pleased that she wanted to sleep on the floor, because Vegemite has the habit of turning into a starfish when she falls asleep, and even a queen sized bed is too small to share with her.

At bedtime, it all seemed to go swimmingly. The girls had a bath and Lil Z went to bed (with a Slinky Malinky story) at 7pm. Vegemite got a bit more time with us before going downstairs to read a few chapters of “James and the Giant Peach”. She loved the fact she could lay on her mattress while listening to the story.

Ben, who is not allowed on furniture, was excited to see that Vegemite was sleeping closer to the floor and curled up next to her mattress. Everyone was happy and went to sleep fairly quickly. Ben got bored when Vegemite fell asleep, so came back upstairs to sleep at his usual post at the top of the stairs.

Around 10.30pm, QB and I went downstairs to get ready for bed. Ben went into his crate in Lil Z’s bedroom. I decided that since Lil Z had been sleeping so peacefully for 3 hours, I would try to sleep in my own bed… And then the bed-hopping comedy routine began:

10.30pm: Lil Z gets her Motilium. I then have to wait 15 minutes for the Motilium to kick in before she can have the rest of her nighttime drugs. I then have to wait another 10 minutes for the drugs to settle in her stomach before starting her overnight feed.

11.30pm – In between giving Lil Z her meds and feed, I read a book on my iPad. I get a bit caught up in it, so it isn’t until 11.30pm that I turn off the lights and go to sleep.

11.31pm – Lil Z starts coughing. I go into her bedroom, pat her back and suction the goo that she is bringing up. She settles and I go back to my bed.

11.35pm – Lil Z starts coughing. I go into her bedroom, pat her on the back, suction her. She settles and I wait a few minutes before going back to bed.

11.40pm – More coughing. Repeat procedure.

11.45pm – And more coughing. Another patting and suctioning repeat.

11.50pm – I give up the idea of sleeping in my own bed and climb into Vegemite’s bed. Lil Z falls asleep and so do I.

1.45am – I wake from a deep sleep with a start when Vegemite taps on my shoulder. She pitifully says that she thinks she has had an accident in her bed while she was asleep. The sheets don’t feel damp, nor do her pajama bottoms, but she is convinced it happened. Giving up trying to convince her otherwise, I help her change pajamas and put her to bed in her own bed – rather than changing the sheets on her mattress.

2am – I return to my bed to discover our cat, Juno, has taken over my side of the bed. She digs her claws in and doesn’t want to move. I finally kick her out of bed and she stalks over to Vegemite’s bed. She finds something that makes a crinkly noise and kneads it with her paws.

2.10am – No sooner am I back in my bed, about to fall asleep, than Lil Z starts coughing again. And crying. I get her up and take her out of the bedroom, so she won’t wake Vegemite (who is already fast asleep). We sit in the study and I rock her and pat her back until she starts to fall asleep again. I put her back to sleep and return to my bed – where once again, Juno has taken over.

2.15am – After evicting an annoyed cat, who returns to making the crinkly noise by Vegemite’s mattress, I climb into my side of the bed and fall asleep.

2.30am – I can hear sounds of Lil Z scratching her ears and whimpering. I go to her bedroom, cuddle and pat her, put her in a different position to sleep. She is calm, so I go back to bed and once again evict the cat.

2.45am – Repeat the above.

3am – Repeat the above.

4am – Sounds of Lil Z coughing wake QB and he gets up with her.

4.15am – After QB’s second trip to the girls’ bedroom, he moves Vegemite from her bed into his side of our bed. He then tries to sleep in Vegemite’s bed. The cat, deciding it is a good time to be fed breakfast, begins a campaign of sharpening her claws on the carpet in an attempt to make me get up. I ignore her.

5.15 – QB gets up, lets Ben out of his crate and feeds Juno breakfast. While he is upstairs, Lil Z starts coughing and vomits – I get up to deal with her. I clean her up and get her resettled. Then I climb into Vegemite’s bed.

6am – More coughing from Lil Z, I deal with it. I return to my bed in my bedroom, hopefully that Lil Z will now go back to sleep for a while, like she usually does in the morning.

6.30am – QB brings me a cup of tea and tells me that he’s leaving for work. I have the idea of drinking my tea in bed while catching up with Facebook on my iPad and enjoying a few quiet moments before the girls wake up. I take a sip of my tea and reach for my iPad…

6.31am – Vegemite wakes up and asks if she can play a game on my iPad.

6.32am – Lil Z starts coughing…

According to the Fitbit bracelet that Gavin got me for Christmas, I got up 19 times between 11.30pm and 6.45am. Nineteen times! And according to my calculations, three people slept in Vegemite’s bed, two in QB’s side of the bed, and two in my side of the bed (if you count the cat). French comedies have nothing on us…. (well, apart from the expressive shrugs and that indifferent ‘umph’ noise that only French people can make).

Fortunately, our bed-hopping routine has stabilised since that night… I have been sleeping in Vegemite’s bed – with no attempt to sleep in my own bed. And Vegemite is sleeping on her mattress in our bedroom – while remembering to go to the bathroom before bed. It has lasted a bit longer than the ‘one or two nights’ I originally intended, but at least we’re all getting more sleep than before.

Vegemite looks less tired and the black smudges under her eyes have disappeared. And after a week of antibiotics, Lil Z is starting to sleep better at night – apart from 2-3am, which seems to be ‘the coughing hour’.

I am hoping that soon we can all return to our own beds. And maybe even try sleeping through the whole night.