Probably the first ‘special’ equipment we acquired was her feed pump – which pumps the formula from a 500ml sachet through a long tube and into her stomach.

I hated it until I came up with the idea that I could use a cheap coat rack instead of an expensive IV stand to hang her food – which I thought was terribly clever – and Vegemite discovered she could decorate the coat rack with stickers and Christmas lights.

After that, it became less hated, to the extent that I hardly think about it.

The feed pump was followed by the suction machine…

And then the standing frame and the supportive seating – in several different varieties, some better than others – and the bath chair, which never got much use, apart from in the paddling pool in summer.

She outgrew her ‘regular’ stroller and after a number of trials, we found a special needs stroller that worked well for her and provided all the right support.

I love it and hate it in equal measure and the fear that she is swiftly outgrowing it because she has such long legs can keep me awake at night.

After the special needs stroller came the hospital bed.

She needed a bed where the head could be raised to help with her reflux, and I needed a bed I could raise and lower in order to protect my back.

The gait trainer came next, but wasn’t as successful as the standing frame in encouraging her to bear weight through her legs.

Several standing frames have come and gone in recent years as Miss Z grows and her needs change.

And we now have a special needs car seat.

Yesterday, her latest piece of ‘special’ equipment arrived: a raised bath.

It is a pretty simple design – a small bathtub on a frame with casters – but it means the world to me.

Miss Z loves her baths.

Bath time is her favourite part of the day, and the one time when you are guaranteed a smile, and usually a song too.

Baths have also been the best way to calm her when she is upset, after a seizure for instance, and they also help to loosen the secretions on her chest, enabling her to breathe better.

But most importantly, they make her happy, which is why I’ve spent a long time debating, discussing and brainstorming with various occupational therapists and physiotherapists about how I can continue Miss Z’s baths as she gets bigger, and therefore harder to lift in and out of the bathtub.

The easy solution is a bath chair, which can be wheeled into the shower, but she doesn’t like showers, she likes baths.

And it was very important to me to give her this one thing that she enjoys.

The solution was amazingly simple, but until I met the right phsyio, I didn’t know they even existed – at least not in a form that fit in our bathroom.

Yesterday the raised bathtub arrived and today we tried it out for the first time.

It will take some getting used to (by the end the bathroom floor was flooded and I was soaking wet, red faced and frustrated), but Miss Z’s huge smile as she splashed around made it worthwhile.

It was a small – and in the end, surprisingly simply resolved – battle, but it is still a win.

We have a bathing solution that doesn’t involve massive renovations to our bathroom…. yet.

All this equipment is important to Miss Z’s quality of life.

Not everything works for Miss Z, but the things that do are immediately incorporated into our daily life and as Miss Z gets bigger, they become essentials.

We wouldn’t be able to get around without the stroller and car seat, she wouldn’t be able to sit or stand without the seating and standing frame.

This equipment quite literally changes her life, and we are so grateful to have it.

However, with the joy of new equipment also comes sadness.

The seemingly never-ending need for expensive, complicated, ‘special’, equipment is a constant reminder of what Miss Z can’t do.

It is a reminder that she needs additional help with even the most basic activities in life and will never enjoy the independence and mobility that her sister takes for granted.

And the equipment also medicalises her (if that is even a word) – it makes her everyday routine feel very institutionalized when I have to rely so heavily on specialist equipment.

And it keeps her at arms length from the rest of the world.

Her stroller is supportive and stable, but it also makes it difficult for her to interact closely with other children and more or less impossible to reach out to touch something in front of her.

Her standing frame keeps her comfortable when she is standing upright, but with a large base, it also prevents her from getting too close to anything or anyone.

And her new bath, which enables her to continue to safely take a bath, also means that baths with her sister will stop – a ritual we’ve had more or less since Miss Z was born.

I am so grateful to have the equipment we do – it transforms Miss Z’s world and gives her opportunities that would otherwise be closed to her.

But with the joy that these opportunities bring, there is always sadness that we need them at all.

Because it happens – a lot.

And while we may set out with the best intentions to educate and show the world that disability does not equal tragedy, the staring gradually wears us down.

For Miss Z and me, we will be hurrying through the grocery store, walking through the park or headed to my older daughter’s ballet class when I suddenly get the feeling we’re being watched.

And low and behold, there is often someone gawking at Miss Z.

Sometimes, it will be her behaviour that attracts attention – arms waving, legs kicking rhythmically at her footrest while she sings, “Awaaaa awaaaa, awaaa!” (if she’s happy) or tries to pull off her ears (if she’s unhappy).

Other times it might be the feed pump – a noticeable purple and grey medical device with tubes running from a bag containing a suspicious beige liquid and disappearing under her shirt.

Or it could simply be the existence of a 4-year-old girl in a wheelchair that makes them stare.

Others with more hidden disabilities than Miss Z may not attract those initial stares, but might also have to face a lot more judgment when they are stared at. Whatever the reason, staring can be hurtful.

Every time someone stares at Miss Z, it is a reminder that she’s different.

I wonder if I’m being judged, if I’m being pitied or if the person doesn’t think Miss Z should be out and about at the grocery store / park / ballet class with the ‘normal’ kids.

It makes me angry because what the staring person might not know is – believe it or not – I forget that Miss Z is different until I notice someone staring at her.  She has had multiple disabilities for pretty much her whole life and we are used to dealing with them.

To us, she’s just Miss Z and we love her just how she is.

Then again, not all stares are hostile and judgmental.

I noticed an elderly woman staring at Miss Z during a hydrotherapy session the other day. The woman was also using the pool and obviously keeping a close eye on Miss Z’s session.

It irritated me because I assumed she was staring disapprovingly, perhaps thinking Miss Z didn’t belong there.

But when the woman got out of the pool, she came over to me to say how lovely it was to see Miss Z enjoying the water.  She went on to say that Miss Z reminded her of her son, who has cerebral palsy and that he’s now 30 years old and she couldn’t be prouder of all he has achieved.

That made my day.

When we chose a primary school for Vegemite, Miss Z’s older sister, we intentionally chose one that was small and had a strong school community.

I didn’t want Vegemite to be forever answering questions about her sister nor did I want her to be bullied for having a sister who was ‘different’.

The best way to avoid this, I hoped, was a small school where everyone could get to know Miss Z. That worked well the first year, but this year, for various reasons, I haven’t had the opportunity to bring Miss Z to school as often.

Last Friday, Miss Z and I went to the school assembly and I noticed several children and parents staring at Miss Z.

It made me feel so sad.

Not because of the effect it would have on Vegemite – her friends and most of her class know Miss Z and either make a fuss over her or ignore her (or a bit of both) – in other words, standard younger sibling treatment.  Not because any of the stares were hostile, mean or judgmental.

It was curiosity about Miss Z that was making them stare.

But because it reminded me that even in a small community like Vegemite’s primary school, I couldn’t ever ease up on my efforts to make sure that Miss Z is included.

People – adults and children – often stare because the sight of a child with disabilities is a rarity.

It isn’t something they see every day, so it makes them look.

We may no longer lock children with disabilities away in institutions, but they are still often invisible in society.

Lack of accessibility, lack of support and lack of public understanding all conspire to make even the most determined of parents decide it is just easier to stay home.

And that saddens me, not only because it isolates children like Miss Z and their parents, but also because it prevents disability from becoming more ordinary and less stare-worthy.

What I didn’t know then was that she would never start eating again – not orally, anyway.

And what I didn’t believe then was that it would be OK.

When Miss Z stopped eating three years ago, it ripped my heart out.

Although it has been one of the most manageable challenges we have faced, it was also one of the most difficult for me to come to terms with.

After all, if you, as a mother, can’t feed your child, you’ve failed, right?

Providing them with food is not only a way to sustain and care for someone, but it is a sign of love.

What do you do when your child simply refuses it?

Previously, Miss Z had been an enthusiastic eater.

She hadn’t progressed beyond purees and the occasional soft food like tiny pasta shapes or little chunks of banana, but I expected that her eating would improve over time.

And in the meantime, I threw myself into making purees every weekend, buying healthy, organic food and searching the Internet and my Annabel Karmel cookbooks for new and creative puree ideas.

Miss Z wolfed most of it down, only occasionally showing her dislike of certain foods, such as avocado.

The height of my feeding achievement was on Pancake Day, when Miss Z ate a whole pancake.

I have a photo of Miss Z and her sister, sitting side by side with their pancakes in front of them, about to tuck in.

Six months later, I had posted the photo of Miss Z with the naso-gastric tube on Facebook.

Miss Z had stopped eating purees and was refusing bottles and her meds.

During that long and exhausting hospital admission, I wracked my brain for reasons why Miss Z had stopped eating.

Had I pushed her too far, introducing chunkier foods?

Or was I feeding her wrong – too fast, or at the wrong time?

Should I have continued breastfeeding for longer?

Was I wrong to mix her medications in a bit of yoghurt to get her to eat them?

And I deployed all sorts of strategies to get Miss Z to start eating again.

Sometimes, she would suck on a bottle if I got it in her mouth when she was asleep.

So, I would wake up every two hours during the night to try to feed her.

I added chocolate powder to her milk to make it taste better.

Every time she opened her mouth, I would be there with a spoonful of puree.

Nothing worked.

Instead, she clenched her jaw and turned her head away.

The times when I did manage to get something in her mouth, she would cough and gag until it came back out.

Giving her medication was the worst.

I would have to hold her down and syringe them down the back of her throat, then hope and pray she wouldn’t choke or vomit them back up.

Three years ago today, I was in an emotionally and physically exhausting place, out of my mind with anxiety about the fact I couldn’t even manage to keep my child hydrated.

And hanging over it all was the dark cloud of regression – that Miss Z was losing the ability to eat, and in fact, the ability to swallow.

I wish I could tell my three-years-ago self that it would all work out in the end, that by January, Miss Z would have a PEG – a feeding tube surgically inserted in her tummy.

And, although three years ago I had thought that a PEG would be a sign of failure, in fact it has been one of our greatest successes.

For me, the PEG (which was later converted to a mickey – a “low profile” type of feeding tube) means that I know she is getting exactly the nutrition she needs to grow and thrive.

It means that there is no fight over taking her meds – she hardly notices when I give them and I know that she’s getting the full dose.

It means I can make sure she gets enough water, especially over the summer months and when she’s sick.

And after three years of tube feeding, I can do it all in my sleep – quite literally, since I’ve done it all in the middle of the night and barely opened my eyes.

For Miss Z, it means no more stress at feeding times, no more being held down and forced to swallow medications.

And it means she is safer, because as her swallow deteriorated, she began aspirating liquids into her lungs and up her nose.

She is a much happier, healthier child today thanks to her feeding tube.

And the tube doesn’t mean that she can never have food orally.

We still try to tempt her with tastes of custard and yoghurt and veggie purees.

She isn’t interested, but that doesn’t mean she won’t want to try them someday.

And in the meantime, she gets smoothies and juices through her tube if we’re all having them and I don’t want her to miss out.

Three years ago, I was facing some difficult times.

I wish I had known then that Miss Z’s feeding problems weren’t because I was a bad mother, or because she was being stubborn, for that matter.

And that a feeding tube wasn’t a sign of failure, but rather the best thing for us.

My career defined me.

I had an interesting job and loved it when people asked me what I did for a living, because it sounded so damn fascinating (even though in reality it had the same amount of daily grind as any other job).

I was good at my job, enjoyed doing it, and never minded putting in extra hours. I spent many evenings after work having drinks with colleagues, building relationships and networks.

My career, above all else, was what gave me confidence and made me feel good about myself.

When my first daughter, Vegemite, arrived on the scene, there was a major readjustment.

Suddenly, work wasn’t the be-all and end-all in my life.  I didn’t work late – it was no longer an option.

I negotiated slightly reduced hours to balance work and life and although it was difficult – very difficult – I still managed to do my job well and was even promoted.

A career with a child was hard and not nearly as rewarding or enjoyable, but it was still possible.

Then Miss Z was born and everything changed again. When she was born we had no idea that there was anything wrong, so I planned to return to work part-time when Miss Z was four months old, leaving her under the care of a nanny until she turned one year old, after which, she’d attend the same day care as Vegemite, and I would consider increasing my work hours.

I thought it was a brilliant plan. And since Miss Z was a grumpy and difficult baby, I actually looked forward to the ‘break’ that returning to work would give me.

Shortly after I returned to work, the big seizure happened.  At five months old, Miss Z had a major status seizure lasting over 45 minutes.

During the seizure she stopped breathing, had to be intubated and remained on a ventilator in PICU for three days.

Initially doctors thought that it might have been a particularly nasty febrile convulsion, but a few weeks later she had another (thankfully shorter) seizure.

And then another.

And another.

By the time she was seven months old, she was on anti-seizure medication and had become a regular visitor at the hospital – both through the Emergency Department and as an out-patient, visiting various specialists.

I tried hard to keep my work on track. I put in hours in the evening after the girls had gone to bed in order to make up for time I’d missed due to appointments and emergencies.

I typed frantically on my Blackberry from hospital waiting rooms. I never said no to anything I was asked to do– I didn’t want to get a reputation as someone who was unreliable or lazy  – and made it work no matter what.

This sometimes led to some fairly ridiculous situations.

Miss Z had a long and unexpected hospital stay that clashed with a conference where I was scheduled as a speaker.

I spent the night before preparing my presentation in a dark hospital room.

My husband took the day off work to stay with Miss Z and I rushed home early the next morning to shower and change into a suit.

It was then I realized I had left my make-up bag at the hospital. There was no time to retrieve it.

So I lived my worst nightmare – not only public speaking, but public speaking without make-up.

I survived and the presentation was okay, but it wasn’t my finest hour.   Instead of feeling a sense of accomplishment or celebrating the end of the conference with a drink with colleagues, I was tired, discouraged and distracted.

Small talk during the breaks felt empty – I was too concerned about Miss Z to care about what someone did at some other company.

I left as soon as possible to return to the hospital.  It is impossible to explain how difficult it is to divide not only my time, but my attention, focus and energy between caring for Miss Z and my career.

The two feel like they’re forever at odds with each other.

Or how the constant worry, vigilance and never-ending to-do list associated with caring for Miss Z has slowly sapped away the passion and excitement I once had for my job.

Last year, I thought I had finally made a breakthrough. I was doing work that I enjoyed and had managed to organize new childcare for Miss Z that meant I was able to be more flexible with my working hours.

Miss Z was also going through a good patch and we had hardly spent any time at the hospital.

Unfortunately, that coincided with the arrival of a new management team, who decided to make me redundant and employ me as a contractor instead.   And then Miss Z became unwell, and the doctors decided that she is unlikely to recover.

My focus is now so firmly fixed on Miss Z – and the rest of my family – these days that it is difficult to find much enthusiasm for work.

I do it for the money and because I fear that not working at all will mean I’ll never be able to return to work.

And because occasionally I have the opportunity to give all my attention to my work and I remember why I used to enjoy it so much.

Watching my career crumble has been one of the hardest parts of being the mother of a child with special needs.

I know some parents of children with special needs have successfully balanced their careers and caring responsibilities, but I have not.

It is both easy and hard to accept.

My love for Miss Z and my desire to help her make the most of her life far outweighs any regrets about work.

There was never a question of which would come first – it was always and will always be Miss Z (and Vegemite, too).

But I sometimes still struggle with what that means for me, and my identity.

It is my work-life conundrum.

We had a meeting with Miss Z’s paediatrician to discuss Miss Z’s life limiting condition and where will want to draw the line on medical intervention for her.

Miss Z’s new carer didn’t meet expectations and we let her go after only a week.

Miss Z appeared to come down with a gastro bug, my husband came down with a chest infection, and my back started really hurting.

And then, Miss Z got worse and ended up in the hospital for a week.

It was a pretty scary week during which no one really knew what was making her so ill.

Fortunately, after three days of IV antibiotics, she started to wake up and after seven days she was allowed to go home. Her last few days in hospital were tough.

Not because she was unwell, but because she was starting to feel better – and therefore let us know how she felt about being in the hospital.

One night she didn’t sleep at all, instead opting to scream inconsolably for hours on end.

The following night, she didn’t scream all night – she threw furious tantrums, followed by silent periods of glaring angrily at me.

During the day she was unsettled and would pull her hair if she wasn’t getting constant attention.

So, I wasn’t expecting an easy time when we came home.

I was just hoping I’d be able to grab a few naps during the day since we wouldn’t have doctors and nurses coming and going once we were home.

The first night was a bit like that.

She was unsettled and didn’t sleep well.

And then it happened.

Miss Z settled.

And she cheered up.

And she suddenly became more aware and interactive than I’ve seen her in years.

She spends much more time looking around her and makes eye contact when someone speaks to her, a big change from the fleeting glances she usually gives people.

This morning she intently watched Frozen and ‘sang’ along whenever there was a song.

This probably makes me the only mother in the world who is happy when their child sings along to ‘Let It Go’.

And she suddenly has so much to say.

She spends her day chattering to herself and anyone who will listen.

And it isn’t just making noise – she seems to be using her voice to engage with the people around her.

Miss Z has also started to pout.

When she’s unhappy she sticks out her lower lip.

It is quite possibly the cutest thing I’ve ever seen.

I’m not sure it quite has the effect she wants, though, since I can’t see her pout without laughing.

She is even smiling more.

For a girl who rarely smiles – and almost never smiles spontaneously – it is so wonderful to see.

And just now – literally while I was writing this – she started giggling.

She never giggles, but she just did it now.

And she did it long enough for me to catch the moment on my phone.

I am so grateful for this time, for being able to see Miss Z as a happy and content little girl.

It is a timely reminder that there is more to being Miss Z’s parents than worry and hospital visits; that she is also a sweet little girl with a sense of humour and an iron will.

It also encourages us to engage with her even more.

We have always presumed competence – believed that she understands us and what is going on around her.

But sometimes it can be hard to hold up a one-sided conversation when she doesn’t look at you or respond when you say something.

The simple act of her looking at the person who is speaking to her has reinvigorated us and reinforced our belief that she is indeed aware of things going on around her.

I wish I could video every moment of these days to watch when things get hard again.

But for now I am just thankful that we have been given these beautiful days with Miss Z.

We have recently become residents of Brisbane’s new, state-of-the-art children’s hospital.

There has been a lot of debate about the design and facilities of this new hospital, and this has got me thinking: what do I want in a children’s hospital?

The top priority, of course, is good doctors, nurses and staff – people who care about your child, work with you as part of a team, listen to your opinions as parents and carers (since we do actually know our children best), as well as providing top notch medical care – in a timely fashion.

But what about the hospital itself, what would the hospital of my dreams look like?

Well, I have a few ideas:

Ample and Inexpensive Parking

Many years ago, when we lived in London and were expecting our first baby, we attended an introductory session at the hospital where we were planning to have the baby.

The session included lots of information on childbirth, breastfeeding and gave a tour of the facilities.

But the most interest and the most questions were all about parking.

Parking seems to be a top concern of most people who have to go into hospital.

So, why is it often so complicated?

Hospital parking is inevitably in short supply and extortionately expensive.

The cost of parking is something that boggles my mind.

None of us want to be at the hospital – whether it is for an admission or an outpatient appointment.

But it isn’t an option; it is a necessity for our child. So then, why the punitive parking charges?

I am a big proponent of public transportation, but it simply isn’t feasible for me to bring my medically complex daughter to the hospital by bus (actually, it would take two buses).

I might feel a bit better about the costs if the money went to the hospital, but in my experience, the parking facilities are usually run by a separate, private company.

So, in my dream hospital there will be plenty of low cost parking.

Close to the hospital and with parking spaces big enough to get kids in and out without denting the neighbouring car in the process.

This alone would, I think, take a lot of stress off parents.

Room Service

I know, this sounds a bit over the top, but hear me out!

If you have a baby or young child, or a child with special needs, or a child who requires complex medical care, chances are, you need to stay with them – all the time.

It can be really, really difficult to leave them – even for a very brief period of time.

I don’t like to leave Miss Z because she is at risk of seizures and aspiration, so needs constant monitoring, and because she is non-verbal, so can’t communicate with the doctors and nurses, and because at 4-years old, it is still a scary experience for her to be left on her own in the hospital.

And although there are nurses caring for her while she’s here, they are here for her medical care.

Nurses aren’t babysitters.

What all this means is that often I miss meals because I need to stay with Miss Z.

And I’m not the only one.

While missing a meal isn’t the end of the world and is all part of the sacrifice that comes with being a parent, it adds to the pressure of a hospital stay.

And while missing one meal may not be a big deal, some parents may not be able to leave at all.

Most hospitals have a café – or a selection of food outlets – on the hospital grounds.

So, it shouldn’t be difficult to arrange a service where you order by phone or online and it is delivered to your child’s room.

After all, Chinese restaurants and pizza places have been doing it successfully for years – so why can’t the hospital café?

Don’t worry, my dream hospital will deliver to your door, for those times when you aren’t able to leave your child’s bedside.

Better Communication

One of the hardest things about Miss Z receiving nearly all her medical care through the children’s hospital is that it is often impossible to communicate with any of her doctors outside appointments or admissions.

The only telephone number offered is the main line to the hospital reception, which then either sends a message to the appropriate person, or transfers you to a department where you are prompted to leave a voicemail message.

Now, I understand that if doctors took direct calls from their patients (or patients’ parents) they would spend all day on the phone and never be able to actually see anyone in person.

But at the same time, there has to be a better way to communicate.

In my dream hospital, there will be receptionists and nurses – real, live people – to take calls, help troubleshoot or navigate the hospital administration when necessary, and pass on messages to specific doctors – and follow up to make sure they respond.

Easier communication would make my life so much easier.

Big Waiting Areas

This one sounds obvious, but we are forever being squashed into over-crowded, noisy, chaotic waiting areas for outpatient appointments.

Since Miss Z can be quite sensitive to noise and crowds, this makes the wait excruciating for her.

And since she is in a wheelchair, it can also be a logistical nightmare, trying to weave through narrow aisles to find a seat without running over anyone’s toes.

My dream hospital will have big waiting areas that are easy to navigate with a wheelchair.

It will have an area fitted out with toys and a television for entertainment, bathrooms (wheelchair accessible with facilities to change older children as well as babies) nearby, and padded chairs (not backless wooden benches) to sit on.

And since this is my dream hospital, perhaps free coffee and tea-making facilities as well.

A few improvements would make long waits outpatient appointments so much better – and easier for all of us to bear.

Music Therapy For All!

One of the most beautiful experiences I have ever had in the hospital involved a music therapist playing her guitar and singing to Miss Z and her roommate – a boy with similar complex needs.

She simply sat in our room and sang a selection of modern popular music – but all of it gentle and calming.

The whole atmosphere in the room changed.

Both Miss Z and her roommate were still and relaxed, listening to the music.

It made me feel quite emotional watching the effect the music had on them both.

It provided a few moments of peace in a day when they were otherwise being continually poked, prodded and stabbed with needles.

There is little doubt that music can make you feel better.

And in my dream hospital, everyone will be given access to music therapy to help them to get through what is otherwise a long, boring and frightening hospital admission.

Appropriate Changing Facilities

Miss Z is four years old, phenomenally long-legged, and is still in nappies.

She is far too tall to fit on a baby changing station anymore, which means it can be a challenge to find somewhere to change her when we are out and about.

Firefly has done a great job of raising awareness of this problem – and encouraging businesses to address it – through its Space for Change campaign.

However, I sometimes feel like that same message also needs to get through to our local hospital – where there is only one bathroom with change facilities for older children in the whole of the hospital.

This is wrong.

The hospital is one of the few places where I expect Miss Z’s needs to be understood and catered for – after all, she is far from the only four year old in nappies that uses the hospital.

And we shouldn’t have to hunt and search for the one bathroom in the whole of a 14-floor building where I can change her.

So, in my dream hospital ALL the public bathrooms on EVERY floor will have facilities for changing older kids.

Information

Most hospitals caring for children have a vast range of wonderful services and volunteers, offering everything from, ‘kangaroo care’, baby cuddling to visiting therapy pets, accessible playgrounds, sensory rooms, services for siblings, and volunteers giving away teddy bears, hand-knit beanies and colouring books and pencils.

There also tends to be a range of services for parents of sick children, such as lounges with free WiFi access, quiet spaces for prayer and meditation, and counselling.

However, in my experience, parents and children – and nurses and staff – often don’t know that many of these services even exist.

The hospital of my dreams will have a directory of services, so that everyone can access information on the services that are available to them – and make use of them.

Those are a few features of the hospital of my dreams.

What would your hospital include?

I bristle at this question.

Perhaps because I think people often have very negative perceptions of the quality of life of people with disabilities.

And these perceptions are often poorly informed.

Last year, in the midst of the furor over Richard Dawkins tweeting that it would be, “immoral”, to continue a pregnancy if there was a likelihood of Down Syndrome, I spent an afternoon reading the comments on Dawkin’s website debating his position.

I’m not sure why I did it – I usually know better than to read online comments about these things.

But what shocked me was that there were so many people arguing that Dawkins was right because a child with Down Syndrome would face a lifetime of suffering.

A child with Down Syndrome, the consensus was, would have a poor quality of life.

Not to mention inflict a lifetime of stress and unhappiness on his or her parents.

My first thought after reading that was: obviously none of these people commenting have children with disabilities.

My second thought was: if they feel that strongly about the quality of life of a child with Down Syndrome, what on earth would they make of Miss Z?

Since then, I often suspect that many people believe that Miss Z doesn’t have a good life, which is why I hate it when people ask me about her quality of life.

How many times have you heard someone say things like, “If I couldn’t walk, I wouldn’t want to live”, or, “Without chocolate, my life wouldn’t be worth living,” or, “I would rather die than have to wear nappies!”

Well, Miss Z doesn’t walk, she gets all her food through a feeding tube straight into her stomach, and she is incontinent.

So, what does that mean about others perceptions of her life?

Miss Z’s life will always be different and challenging.

But that doesn’t mean she doesn’t have a good life.

Nor does it mean that her life doesn’t have value.

She is loved – and loves back.

I have often been surprised at the love so many people have for Miss Z.

I’m regularly in situations where I have to compete for her because others want to hold her and give her a cuddle, too.

And she loves cuddles.

The girl lives and breathes affection and is rarely denied it.

She is active. Miss Z is busy during most weeks.

She goes to school.

She swims.

She has physiotherapy, occupational therapy, and speech therapy.

She enjoys walks along the river and drives in the car as well as having a good roll about at home.

She participates in her community.

She attends her sister’s Friday school assemblies and, ‘sings’, along to the national anthem.

She also loves going to her sister’s piano recitals (despite them being held in a very inaccessible-by-wheelchair venue) because she enjoys listening to music.

And Miss Z is a regular visitor at the gym with me – where she rolls on the floor and sings while watching me sweat.

She is happy.

No one who sees her splashing in the bath or wiggling and singing along to Katy Perry can doubt that she has joy in her life.

Whenever we have been away from home – either at the hospital or away on holiday – she responds with unadulterated glee when she’s back home.

This isn’t to gloss over her medical issues – of which there are many – or the fact that a significant part of her day is spent dealing with those issues.

Or, that at times she is very unwell and unhappy.

I also know that the doctors believe that these medical issues and her care will continue to take up larger and larger parts of her day.

But for now, she has a good quality of life.

It may not be the one I had envisioned for her when she was born or the one most people would choose, but that doesn’t make it bad.

In her world, she is surrounded day and night by people who care for her and who will do anything to make sure she feels secure and loved.

There isn’t a much better quality of life than that.

I just wish that more people understood.

After four years of seizures, I know exactly how to spot one, what to do, when to do it, and when I need to call an ambulance.

Respiratory problems are still a learning curve for me.

I don’t really know how to spot when she’s having trouble, many of the things they’ve told me to do don’t seem to help, and it isn’t always clear to me when we need to take her to the hospital.

This leads to a lot of feeling inadequate, confused and indecisive.

We are also trying to come to terms with the fact that the doctors don’t think she is going to recover from these chest infections.

At best, we will manage them and keep her out of hospital; at worst, she is going to get even sicker.

And we’re mixing up our care arrangements.

So, I’m in the midst of recruiting a new carer, who will only work a fraction of the time our current one does.

On paper it makes sense – it reflects the fact Miss Z is at school two days a week and that we need to save money because I’m not working as much because I’m so frequently at the hospital with her.

However, I know in practice, it is going to take some getting used to – if only because I’ll no longer have another person to help me juggle it all.

And with Miss Z now four years old, we need to start thinking about adaptations as she becomes too big to regularly lift and carry.

And that requires a lot of research, investigation and fundraising.

And next year will be a big shake up in terms of her therapy – as she leaves the, “early intervention”, programmes and starts school.

So, I need to decide what therapies she’s going to continue and find new therapists – and figure out when exactly we’re going to see them…

And I need to keep going with her communication.

Use her iPad more regularly and make sure that school and her carer are doing the same.

And organize several assessments, including one to determine if she would be a good candidate for eye gaze technology.

And I need to manage all her appointments with doctors and specialists.

And make sure that we have plenty of all her medications at home and that none of the repeat prescriptions has expired because running out is not an option.

And I need to keep on top of orders for her special formula and all her clinical supplies.

Usually managing all this feels like a challenge – in the positive, ‘I can do this’, sense.

I like being well organized and well informed.

I am happy to take on the role of family logistics manager and I generally have a sense of achievement at doing it because I think I do a pretty good job.

Lately, however, it has been feeling like it is just too much.

I can’t bear to even look at my, ‘to do’, list because it is too long and too full of things that are too difficult to do.

I am slowly becoming buried under the hundreds of thousands of little jobs that come with caring for a medically complex child.

Procrastination has become my constant companion.

I’m only managing to achieve essential tasks at the moment – keeping Miss Z fed, medicated and seen regularly by her doctors and therapists.

This is what I think is so hard about being a parent of a child with special needs – it is the unrelenting tasks and responsibilities and appointments and paperwork.

And they aren’t things that you can delegate.

And when you find yourself in a rut – like I’m in now – there isn’t much you can do about it.

Except pull yourself together and dig yourself out of it.

For the moment, I seem to be languishing in my rut.

But I’ve also started taking some small steps to getting out of it.

For example, I’ve started running again.

Not a lot, but Vegemite and I have registered for a few fun runs to raise money for a local children’s hospice.

Running has always been my escape and the best way for me to blow the cobwebs out of my mind and enjoy a little endorphin rush.

I’ve let it slide because I’ve been so caught up in everything else, but now I’m getting back into it and running again feels good (mentally at least, physically is another matter).

I’m also making myself go on a mums’ night out with some mothers from Vegemite’s class.

It is a bit outside my comfort zone – especially since I’ve been enjoying cocooning myself off from the outside world as I cope with Miss Z.

However, I know a few drinks, a meal out and conversation that doesn’t involve Miss Z’s health will be a boost.

I wouldn’t trade Miss Z for the world, but life with a medically fragile child is hard.

It is isolating.

And it can feel like it is all too much.

I wouldn’t trade Miss Z for the world – nor would I want to give up my role as her caregiver, personal assistant and advocate (as well as being her mother).

But sometimes I need to remind myself that it is OK take a break.

Miss Z is non-verbal.

This doesn’t mean she isn’t able to communicate – in fact, she can be surprisingly effective at getting her point across.

As I regularly assure therapists, nurses and doctors, if she doesn’t like something, she will lose no time in letting you know.

Those who spend a lot of time with her can also understand when she’s happy, very happy, bored, in pain or frustrated, mainly through a combination of the tone of her voice and her actions (arm waving and head shaking are happy signs, ear scratching and hair-pulling mean unhappy).

Miss Z also has very limited use of her hands.

She can’t independently isolate one finger from the rest (for example pointing or giving a ‘thumbs up’) and can really only do big, gross motor movements.

For this reason, sign language isn’t very successful for her.

She is able to do a few basic signs and understands several more if she is doing body signing (where we do the sign together), but it is never going to be her easiest or preferred mode of communication.

So, this is where our Communication Revolution begins.

We need to find a system of communication that works for Miss Z.

Augmentative and Alternative Communication (AAC) is the term used to describe various methods of communication that can ‘add-on’ to speech and are used to get around problems with ordinary speech.

AAC includes simple systems such as pictures, gestures and pointing, as well as more complex techniques involving powerful computer technology.

We have started with an iPad and a few basic communication apps.

One of the greatest challenges so far has been finding something that motivates Miss Z enough to actually try to communicate with us through the iPad.

With many children learning augmentative and alternative communication (AAC), food is a great motivator.

Miss Z is completely tube fed, however, so we have settled on some of her favourite activities instead: bouncing, swinging, listening to music, and watching cartoons.

At the moment, her communication choices are limited to which activity she wants to do, and then choosing the song, cartoon, or how long and how fast she swings or bounces, as well as a choice of “finished”.

She can also choose, “yes”, and, “no”, for other types of questions.

We have only just started and for the moment the results are limited.

There are times when she seems to intentionally make choices.

For example, she repeatedly played the Frozen song, “Let it go”, after a nurse commented how much she disliked the song.

However, there are other times where she just isn’t engaged, and even if she does make a choice, I suspect that it was more accident than intention.

With the question of how effective she will be using her hands to make communication choices, we are also planning to have her assessed to see if eye gaze technology might be a better fit for her.

This has been particularly successful for children with limited hand use – such as girls with Rett Syndrome – so it is an exciting prospect.

Whatever communication system we ultimately choose, there isn’t going to be a miracle moment where Miss Z suddenly starts discussing world politics with us, or declares that actually she deeply resents having to wear her sister’s hand-me-down clothes.

Instead, it is going to take a lot of dedication, persistence and work to help her to begin to communicate.

It means giving Miss Z the time she needs to organize herself to communicate – something that can take five minutes or more at the moment.

It means using augmentative and alternative communication all the time in all our interactions – with me modeling it and encouraging Miss Z to respond.

It means forcing her sister to be patient and let her sister make up her own mind.

It means teaching everyone who interacts with Miss Z how she communicates – and making sure they encourage her to use augmentative and alternative communication to respond.

Communication is, without a doubt, the most valuable thing we can give to Miss Z.

If she can communicate, she can gain a measure of control over her life – which will improve her quality of life and her happiness exponentially.

Unlike some revolutions, it isn’t going to happen overnight.

Nor is it going to be easy.

But in the end, it will be worth it.