When she was little, we called Miss Z the marsupial baby.

She was always happiest when she was close to me.

During the first year of her life, her disabilities were just beginning to come to light and I didn’t want to be separated from her any more than she did from me.

So, she spent a lot of time in her baby carrier, strapped to my chest. It was often the only way she would sleep during the day.

And at night, she usually ended up in bed between her dad and me.

When she would have seizures, she would scream for hours afterwards, completely inconsolable.

The only thing I could do was to put her in the baby carrier and walk with her.

It didn’t stop her crying, but at least I felt like I was doing my best to give her comfort.

And I loved holding her and cuddling her.

I didn’t know how to fix any of the things that were going wrong – the seizures, chest infections, swallowing problems – but I could comfort her and help her feel she wasn’t going through them alone.

We spent a lot of time in the hospital, with me holding her.

Predictably, as Miss Z got older, she grew. She became too big for the baby carrier.

And then she became too big to carry very far at all. But I could still lift her onto my lap for a cuddle.

And because she didn’t like being in her wheelchair, she spent a lot of time on my lap.

However, at seven-years-old, nearly 30kg and with long, long legs, cuddling her on my lap is coming to an end.

Not only do I struggle to lift her onto my lap, but it doesn’t comfort her the way it used to, probably because now that she’s bigger, she isn’t as comfortable.

And these days she’s nearly always connected to tubes that make it difficult to move her around.

I’ve tried to adjust.

I snuggle up behind her and spoon her. I kneel beside her bed and rest my head on her pillow.

And although she has poor motor control, Miss Z often grasps my finger or rests her hand on me.

We still want the connection, but finding ways to cuddle as she grows is becoming more and more challenging.

However, the difficulty can also make me appreciate our cuddly moments even more.

This afternoon, I sat her beside me on the sofa and put my arm around her to support her.

She put her hand on my leg and rested her head on my shoulder.

And we sat there, listening to music and enjoying a cuddle.

She may be too big to be my marsupial baby, but she’ll never be too big for cuddles.

Adulting. You’ve undoubtedly seen the memes or heard people talk about how they don’t want to “adult” today. If, like my husband, you’ve never heard the word before (at least in that context), it means the practice of behaving like a responsible adult.

I remember the exact day, time and circumstances of the first time I felt like an adult.

Strangely enough, it wasn’t when I went away to university.

Nor was it when I got my first job or even when I got married. And although I probably started to feel a bit more “adultish” after the birth of my first daughter, it wasn’t then, either.

It was on the 30^th of September 2011 at around 2 o’clock in the afternoon.

I was working from home when the nanny came into my office, carrying my six-month-old daughter and said “Miss Z is acting funny. What should I do?”

I remember very clearly taking Z from her and noticing how she seemed to be very stiff and rigid and her breathing was rapid, shallow and strangely rhythmic.

I had no idea what was wrong with her.

I had no idea what to do. The only other adult at home was the nanny, and she was waiting for me to tell her what to do.

I was the adult. I had to decide.

“I think we need to call an ambulance,” I said.

I had never had to call an ambulance in my life. As far as I knew, you only called an ambulance when someone had a heart attack or was hit by a car. But calling one because your baby was acting funny? Would the paramedics tell me off for over-reacting? Would the 000 operator even agree to send an ambulance?

I became the adult.

I made the decision and called an ambulance. The paramedics did not tell me off – probably because they were too busy saving Z’s life. The funny behaviour turned out to be a status seizure that took over an hour and several powerful drugs to stop.

During the hour or more that it took the paramedics and then the Emergency Room doctors to end the seizure, Z stopped breathing twice. She had to be incubated and spent nearly a week in intensive care.

In many ways Miss Z’s story, and my story as her mother, started on that day.

She had been a difficult baby and there were missed milestones, test referrals and concerns that came before that horrible day, but it was September 30^th, when my husband and I stood in the Resus area of the Emergency Department and watched 18 doctors and nurses working on Miss Z that the seriousness of the situation and the frightening possibility of what lay ahead became clear.

And it was from that day onward that we have had to make difficult, grown-up decisions about our daughter on a regular basis.

Miss Z makes me “adult”.

From that day onward, I’ve always needed to be ready to take difficult decisions – Will this surgery improve her quality of life? Is she sick? Should I call an ambulance?

And caring for Z is a constant job. It includes everything from basic care, like changing her nappy, dressing her and trimming her fingernails, to drawing up and administering her medication to coordinating her multiple medical and therapy appointments each month.

I’m often up in the middle of the night, helping her to breathe by suctioning her and repositioning her because she can’t roll over in bed by herself.

I watch for seizures and give her emergency medication if a seizure runs too long. I take her temperature and monitor her SATS levels and respiration rate when she is unwell.

Caring for Z requires constant adulting.

However, one thing I’ve learned while I’ve been adulting is that it doesn’t mean my life is without joy. Miss Z, and her sister are constant sources of happiness and laughter and just plain goofiness in my life.

And watching the two girls together is my greatest source for joy.

And it doesn’t mean I have to behave like an adult all the time – as Miss Z and her sister will tell you. When I’m with the girls I sing, and dance and make up songs about “poonamis” (those massive dirty nappies that swamp everything like a tsunami).

I got my nose pierced for my birthday, because I fancied it. As Z’s sister heads into the pre-teen years, I am increasingly amused the ways I (usually inadvertently) manage to embarrass her.

Being an adult also means learning my limits and asking for and accepting help.

It means taking time for myself so that I can live to “adult” another day. Being a responsible adult means knowing that I need to stay strong and healthy to make those hard decisions. This is a work in progress for me, but I’m learning that being an adult doesn’t mean doing everything by myself.

Adulting. It can be hard and it can bring joy, but most of all, it doesn’t need to be done alone.

A little over four years ago, we brought home a cute little bundle of fluff. We named him Ben. He was a puppy with a lot of expectations on him.

You see, Ben was carefully selected to become a seizure alert and therapy dog for our severely disabled daughter, Miss Z.

We did not go into the decision lightly. Instead, we spent over a year researching and discussing the possibilities with a variety of breeders, service dog organisations and dog trainers as well as several people who used service dogs. We debated if we wanted him to be qualified to accompany Z everywhere or if he would provide his “therapy” services more informally at home. Ben was the product of a lot of research and planning.

The first day, everything went swimmingly and Ben and Z even snuggled up together for a nap. We were thrilled.

However, the next morning, Miss Z became unwell, we had to call an ambulance and she ended up staying in hospital for nearly two weeks. During that time, Ben formed an attachment to Miss Z’s older sister. When she came home, Z was poorly and fragile – which didn’t mix well with a lively, bouncy puppy.

We threw ourselves into Ben’s training and socialisation. We took him out with us as much as possible to get him accustomed to a variety of places and situations. We did rigorous training with him.

However, Miss Z and Ben never formed a bond.

One day, when Miss Z was having a seizure, Ben appeared at my side with a toy – trying to convince me to go play with him. It was then that I knew he would never be a seizure alert dog.

Four years on, Ben is a different sort of therapy dog. Not for Miss Z (she prefers the cat) but for the rest of the family. He provides much needed affection and levity on those days when life is hard and he gets me out for a head-clearing walk every morning, even on the days when I’d rather hide away.

Online and in support groups, there always seems to be a number of people who are considering getting a puppy to train to support their child with a disability.

Our experience with Ben has taught us three important lessons for people considering doing this:

One – not all dogs are cut out to be therapy or service dogs. Some dogs are naturally empathetic and caring while other dogs can be taught to respond, but just don’t have the instinct. Ben is a loving, affectionate, intelligent dog who doesn’t have a mean bone in his body. However, he just doesn’t have that nurturing, empathetic instinct that would have bonded him to Z.

Two – you can’t think of the dog as a pet.

Service dogs are working dogs, not pets. If we had trained Ben to become a service dog, we would have had to stop treating him like a cuddly pet dog all the time and limited his play time with Z’s sister. In addition, we would have had to send him away for a significant period of time for training, as it is quite specialised and time consuming.

Three – be a responsible dog owner. When we finally decided to get a puppy, my husband and I treated it a bit like a marriage. We were getting the dog for better or for worse and until death do us part. Ben was going to be part of the family for the rest of his life, whether or not he became a service or therapy dog. It is a serious commitment.

I often wonder how many people get puppies with high expectations, and when it becomes clear that the dog isn’t suitable or it will take too much time, get rid of it.

Many dogs provide wonderful support, companionship and assistance to children with disabilities. However, it is important to go into the process informed and prepared.

I read recently about a study that found that while male doctors were introduced at conferences they were almost always called, “Doctor”, while female doctors were more likely to be introduced by their first names.

The study, published in the Journal of Women’s Health, looked at 321 introductions and concluded that when men introduced speakers, professional titles were only used 49 percent of the time for female doctors, compared to 72 percent of the time for male doctors.

The article got me thinking about how I refer to my daughter’s doctors.

Miss Z has a complex medical background and we have had no shortage of doctors in our lives over the past seven years.

It’s rare for us to go a month without seeing at least one doctor.

Currently, Miss Z regularly sees a General Paediatrician, Neurologist, Endocrinologist, Respiratory Specialist, Orthopaedic Surgeon, Gastroenterologist and Ophthalmologist.

We are fortunate that we see the same specialists every visit, so I’ve got to know these seven doctors fairly well over the years.

Of the above group, three are women and four are men.

I call two of the female doctors by their first names, but refer to all the men by their titles.

Am I accidentally not giving the two female doctors the same level of respect as their colleagues?

If I’m speaking to someone else about the doctor – for example, a nurse or receptionist – I always refer to them as, “Doctor So-and-so”.

But when I’m having a conversation with the doctor, I definitely tend to use the female doctors’ first names more than the men.

Honestly, I’ve got enough to worry about with Miss Z’s health, but, as someone who wants to set an example for her daughters, the more I thought about it, the more the issue concerned me.

And it still troubles me now.

I don’t think I’m inadvertently discriminating against Miss Z’s female doctors.

Nor do I think I’m unconsciously belittling their expertise.

And I have referred to several of Miss Z’s male doctors by their first names over the years.

In fact, I only know the first name of our favourite (male) doctor in the Emergency Department.

I think how I refer to the doctors has more to do with my relationship with them.

Miss Z has very complex health issues and is diagnosed as palliative.

As a result, I see some of her doctors – particularly the two that I call by their first names – more than I see most of my friends and family.

And I’ve had more intimate, emotional, brutally honest conversations with these doctors than with anyone else.

We’ve discussed resuscitation plans, quality of life issues, and high-risk procedures and surgeries.

They’ve seen me cry and they’ve seen me put my foot down and demand action.

The doctors I call by their first names – male and female – are the ones I trust and respect the most.

They’re the ones that I turn to when I disagree with one of Miss Z’s other specialists.

I consider them to be part of, “Team Z” – working with us to keep our daughter as healthy and happy.

It is far from disrespect.

I just hope they know that.

During the hearings, DeVos failed to commit to enforcing the federal legislation ensuring children with disabilities have a right to education.

In fact, she appeared not to fully understand that children with disabilities were guaranteed access to education under federal law.

I’m American, the mother of a girl with significant disabilities, the daughter of two (now-retired) teachers, and have studied politics, so I’m interested in the appointment process.

But, my family lives in Australia, so DeVos’ appointment won’t have a direct impact on me, or my daughter’s access to an education.

Still, it is naïve to think that these things happen in isolation.

US policy inspires trends elsewhere in the world and vice versa.

And although the spotlight may be shining brightest on the US at the moment, it doesn’t mean that it is the only country where the rights of children with disabilities are coming under threat.

We live in a global society, and the loss of rights in one country – particularly a country as big and influential as the US – can affect us all.

Several years ago, my husband and I attended a series of workshops for parents of children with disabilities.

Three of the workshops focused on topics such as helping your child to engage with their local community, setting and achieving goals, and not limiting your child’s opportunities.

They were feel-good workshops, where we imagined a positive, optimistic future for our daughter.

The fourth workshop, however, focused on the historic treatment of people with disabilities.

It was not feel-good. In fact, it was extremely distressing.

Hearing how children such as my daughter were treated in the past – abused, neglected, forgotten and often left to die – was upsetting.

Some of the parents complained – what was the point of hearing these awful details when that isn’t how things are today?

The workshop facilitator responded that only by understanding the past treatment of the disabled could we ensure that those things never happened again.

I’m reminded of that workshop when I think about the current education debate.

After all, it wasn’t that long ago that children like my daughter, Miss Z, could be denied access to education on the basis of their disabilities.

In most Western countries today, children with disabilities have the right to an education. And this is generally recognized as a good thing.

But that doesn’t mean that they are always welcome at school. Funding is often an issue.

Parents can spend years fighting for an adequate level of support for their child to help them to function and learn in a classroom.

And in mainstream schools in particular, other parents can be less than welcoming.

How many times have you heard other parents complain about, “the autistic kid”, that disrupts their child’s class?

Or that the, “special needs kid”, takes too much of the teacher’s attention?

Even those who have good intentions often view Miss Z attending school as more of a bonus for her, a nice thing for her to do with her day and respite for me, rather than as her accessing right to an education.

They don’t see her as someone able to learn, benefit from education, or ever make “real” use of it by going to university or getting a job.

After all, an education isn’t going to cure her.

This makes me angry.

My daughter is always going to be disabled and school isn’t going to change that. This is true.

However, her access to education – and just as importantly, the quality of that education – will determine the type of life she leads and how she interacts with her community.

If she is seen as hopeless or un-teachable, then that is exactly how she will stay.

If she is stuck in the back of a class without the right support and resources, she won’t learn and she won’t grow.

We are lucky. Miss Z attends an excellent local special school that understands her educational needs.

We don’t have to fight for support or access – if anything, they have been the ones to encourage me to challenge Miss Z a little more than I thought was possible.

And in the one year that she has been there, it has already made a significant difference to her.

Her communication skills have progressed much farther and faster than we ever expected they would.

Miss Z is nonverbal and has struggled to make her needs known beyond crying when she is upset, bored or in pain.

After a year of focusing daily on communication as a foundation for all learning and constantly being exposed to alternative forms of communication, such as communication books and cards, she can consistently answer yes and no questions, make basic choices and express her opinions.

Reflect for a moment on what a big achievement this is.

Imagine not being able to communicate even your most basic needs.

Imagine everything in your life being decided by people who may be good intentioned, but aren’t physic and don’t always know what you want or how you feel.

And then imagine being able to say: “yes, I want to watch tv” or “I don’t like that song” or “I’m in pain”.

This isn’t something I could have ever achieved at home.

It was the result of the concerted and well-planned effort of her teacher, who is a specialist alternative communication, working closely with Miss Z’s speech pathologist and experienced teacher aides who reinforce communication lessons.

And that is only the tip of the iceberg.

School gives her independence. It challenges her and lets her try new things.

For example, art class at school revealed that she loves to paint.

It also gives Miss Z a sense of fun, excitement and belonging.

She attends school camp. She dresses up for Book Day. She goes on field trips with her class. She performs in the school Christmas concert.

These moments are just as important to her, and to our family, as they are for typical children.

And that is why I watch the developments in the US with concern.  Governments all over the world are looking at ways to cut education funding.

All over the world, people are questioning the value of educating children with disabilities.

We must all be vigilant to ensure that we never go back to the attitude that education for children with disabilities doesn’t matter. It does.

The only problem is – as parents with a child in a wheelchair know – you can’t rely on love alone to lift you up where you belong.

Love doesn’t protect you from slipped discs, pulled muscles or lower back pain.

We know. We have been carrying Miss Z up and down stairs in our house for years, and the wear and tear is beginning to show.

Miss Z is now 5 1/2 years old and weighs 23kg (50lbs) and no matter how much we love her, it is getting harder and harder to carry her up and down the stairs.

And it is becoming less and less safe for everyone.

This is not a new issue for us. We live in a two-story house, with most of the living space located upstairs.

We’ve known for a while that there will come a time when we can no longer carry Miss Z up and down the stairs.

However, finding a solution has been a long and difficult struggle.

Initially, we thought that we could build a ramp up the side of the house (which is on the side of a hill).

Unfortunately, it turned out that the incline was too steep to safely push a wheelchair up and down.

Still hoping we wouldn’t have to make major renovations, we looked into the option of a stairlift.

However, it quickly became clear that wasn’t a good option. Miss Z can’t sit independently, so would need extra support and a harness to keep her safely on the chair.

She is also unable to stand, so we would eventually need hoists at the top and bottom of the stairs to get her in and out.

Not to mention a stairlift on our not-very-wide stairs would make it difficult for the rest of us to get up and down.

We were also advised – by a number of people – that we should simply move to a new house.

As if it was that easy!

But that wasn’t a good option for anyone in the family. Not only would a move be expensive, but it would also likely take us out of the area that we have lived in for years.

In fact, it made me a bit angry that it was suggested so glibly, seemingly without regard to important issues that would affect the whole family’s quality of life, like having to change schools and doctors and having longer commutes and less access to public transport.

After a lot of discussion (some of it quite emotional), some invaluable advice from occupational therapists, builders and equipment providers, and a lot of planning, we decided to install a small lift (elevator for those of you in the US) in our house.

It will run from the garage into what is currently the walk-in wardrobe in our spare bedroom – which will be converted into Miss Z’s new bedroom.

Work on the lift begins… tomorrow!

And it is both terrifying and exciting. Terrifying because is it very expensive.

There is very little funding available for home accessibility modifications for children with disabilities here in Brisbane, so we are paying a lot of the costs out of our own pocket. So the pressure is on to get it right and installed on budget.

But it is also exciting because it will transform the way Miss Z accesses the house.

She will be much more mobile, since she will be entering the house in her wheelchair – instead of being carried.

And all our other home modifications hinge on the lift being installed.

Once we can get her safely up and down, we can focus on making other areas, such as the bathroom, her bedroom and the family room, more accessible for her, too.

These changes will make her life easier and help her to engage with everyone.

Love may not be able to lift Miss Z, but Miss Z is going to love being lifted up where she belongs – with her family.

I was hesitant about my husband going away.

Why?

Because our younger daughter, Miss Z, is the master of, “Whatever can go wrong, will go wrong”, – and usually at the worst possible time.

Let me give you an example.

Earlier this year, my husband wanted to travel to the UK for 10 days.

The girls and I would stay at home.

I encouraged him to go, saying, “We’ll be fine… just so long as Miss Z doesn’t end up in the hospital.”

(Followed by a chuckle, because Miss Z was fine when I said it).

I’m sure you know what happened next.

My husband flew out to the UK on Thursday afternoon and by Saturday I was calling an ambulance for Miss Z.

She ended up spending 7 out of the 10 days he was away in the hospital.

Generally, Miss Z is slightly subtler in demonstrating her, “law”. I’m usually faced with things such as seizures just as the school bus arrives or coughing fits when we walk into the library.

If we’re planning a big outing with Miss Z, she’ll be happy and healthy the two days before, only to wake up in a foul mood, constantly crying and probably running a temperature on the day that matters.

I can give her anti-constipation medication for days, but it will only kick in when she’s in the pool for hydrotherapy.

This is also the girl who gives everyone big, silly grins until you pull out a phone or camera – and then she’ll scowl like no one’s business.

Whereas Murphy’s law incorporates an element of hope – sure if something can go wrong, it will, but you can do something to prevent it going wrong, right? – Miss Z’s law is heavy with inevitability.

No matter what you do or how prepared you are, it will still go wrong when you least expect it.

So, on that morning when I need everything to run like clockwork in order to get one child to school, one child to an appointment and me to somewhere else, I can plan and prepare the night before all I want, set everything out so we only have to get dressed and walk out the door – Miss Z is still probably going to throw a spanner in the works!

Z’s law makes me superstitious.

After all, she has a history of developing issues shortly after I proclaim to a doctor that she has never had that issue.

So now, I do a lot of knocking on wood, crossing my fingers and prefacing sentences with, “I hope it’s not bad luck to say…”.

Here’s how a typical conversation with the neurologist goes:

Neurologist: How have Miss Z’s seizures been?

Me: Well, her seizures seem to have decreased (knocks on wood).

Neurologist: How has she responded to the new medication?

Me: So far she has responded well – she hasn’t shown any side effects.

Since I’m most superstitious about seizures, Miss Z’s neurology appointments sound like a hungry woodpecker is in the room.

Based on the fact our neurologist doesn’t seem to find this unusual, I suspect I’m not the only parent with this type of superstition.

Z’s law isn’t all bad though.

Like Murphy’s and Sod’s laws, it can be really effective at making me laugh at the situation – and myself.

It is also a reminder that things go wrong and yet we still survive.

Missing the bus, interrupting the library with loud coughing, frowning at the camera – this has all happened before and will happen again, but we’ll go on.

Because that is the second part of Z’s law – if something can go wrong, it probably will, but we’ll survive it and laugh about it… eventually.