No need to be amazed, it isn’t rocket science really, he’s just my son and I love him the same as any mother loves her child…

OK, so he has added extras, but he’s still just my cheeky, gorgeous little dude.

Neither Sam’s Dad nor I see ourselves as anything other than parents to a lovely little boy.

I suspect all special needs parents will identify with the sense of slight amusement as we are hailed somehow more inspirational, or stronger than mere mortals.

We didn’t choose this life but it was what was given to us, so we do what every parents does – we raise our children to the best of our ability.

I read something on Facebook this morning, about how you can either get bitter or you can get better.

I chose the latter option.

It was a conscious decision, I didn’t just suddenly wake up one morning and feel OK with the knowledge that my only child is profoundly disabled.

I made a choice.

When he was born I promised to love him no matter what.

To be his greatest champion, cheerleader and to be the best Mum I could possibly be.

None of that has changed just because he communicates with me in a different way to talking, or that he needs me to be his legs and carry him because he can’t yet walk.

Seeing how my tiny boy defiantly loves life and giggles in the face of his disabilities (and at farting… farting is extremely funny) just makes me love him even more than I ever imagined possible.

When Sam was 18 weeks old we were given a bleak prognosis for him; at that time we had no idea what was going on with our baby, all we knew was that he was critically ill.

I promised God at that moment that if he would just spare my boy we would deal with any disability, just let him stay with us. Please.

It’s a promise I intend to keep.

Despite our hopes that she would be a tomboy, she declared very early on that she only wanted to wear pink – skirts and dresses only, thank you very much – and prefers ballet to playing sport.

Expectations that she’d be a bookworm have been worn away by the fact she prefers drawing to curling up with a book.

All of these opinions and preferences are part of who she is, and remind us that although we gave her life, she is very much her own person.

And it has been a (somewhat unexpected) joy to watch her grow and develop into that person.

My younger daughter, Miss Z, also has strong opinions and is not shy about sharing them.

However, because she is non-verbal, her opinions are, by necessity, translated by others.

Although we are working on communication, at the moment she is really only able to tell us if she likes something (by being happy, smiling or singing) or she dislikes it (by becoming grumpy, crying, and

scratching her ears).

Unfortunately, it isn’t always clear what she likes or dislikes.

Is she smiling because she likes the music or because she’s happy to be home from school?

Is she crying because she’s bored or because she is in pain or is it that she just doesn’t like what’s on television?

Even her father and I – the two people who know her best – often disagree about what is making her unhappy.

For example, Miss Z hates the hospital. She gets cranky the moment we set foot in the building – even if we’re only there to pick up supplies or a prescription.

Logically, I assume that she hates the hospital because she is reminded of all the times she has had painful procedures there, or been unwell, or been poked and prodded by doctors.

But does that mean that she is scared of the hospital? Or is she angry that I’ve taken her there?

Or perhaps it has nothing at all to do with memories – maybe she thinks the air conditioning is set too high or she doesn’t like the noise or gets bored and frustrated with all the waiting.

I often hear parents of non-verbal children say things like, “I am her voice,” or, “I know what she’s thinking”. These statements make me uneasy.

While I am Miss Z’s voice, in that I am her mother and her advocate, I can’t speak for her, only on her behalf.

And this is because, quite honestly, I don’t know what she is thinking.

I can guess what she is thinking, and sometimes she shows me very clearly what she is thinking, but I don’t have a psychic connection to her.

But oh, how I wish we were psychically linked.

I really want to understand how she views her life.

I wish I could know how much she comprehends of the world around her.

I wish I could find out the reason she seems grumpy so much of the time – is it frustration, boredom or pain? – and what I can do to help.

And I even wish I could understand why she likes some cartoons and not others or why she loves music by ABBA as much as she does (she really, really loves them).

I’ve always read with interest things written by people who have some of the same issues as Miss Z, such as online posts about “how it feels to have a seizure” or blogs written by people with disabilities.

It helps me to understand some of what she might be feeling.

But at the end of the day, no one knows how it feels to be Miss Z or what goes on in her head – except her.

During a recent communication workshop, a speech therapist told the story of a non-verbal young man. For years, his mother had taken him to a riding for the disabled programme.

She was convinced that he enjoyed and benefitted from the experience, so turned her schedule upside down to make sure he attended every week. Years went by.

Then, one day the young man was given access to a communication device.

What were his first words?

“I hate horses, they stink!”

I will keep working to communicate with and better understand Miss Z.

It is something that I will never stop doing.

I just hope that I don’t someday learn that she actually hates ABBA!

From the moment she arrived, she was happiest when she was snuggled up against me.

She would happily spend her day strapped to my chest in a baby carrier, her head resting on my chest.

As she has grown older and bigger, I’ve had to give up the carrier, but Miss Z still loves her cuddles.

On weekends, I bring her into bed with me in the morning and we snuggle and doze under the covers.

 It is clear that Miss Z feels safest and happiest when she has physical contact with the people around her.

This is just one of the many reasons I find it hard to let go when it comes to her.

So, when my husband suggested that I take our older daughter, Vegemite, to visit my family in the US after Christmas, I was keen – but reluctant to leave Miss Z.

At first, I toyed with the idea of taking Miss Z with us. I knew it was unrealistic – she is simply not healthy enough to cope with a long haul flight.

Not to mention that no travel insurance company would ever consider covering her, which would leave us for a month in the US with a medically fragile child with no health insurance.

Not a good idea.

And that’s before we even start considering how Miss Z feels about new and unfamiliar places or cold weather.

It just wasn’t going to work.

So, I reconciled myself to making the trip without her. But I still couldn’t bring myself to book the flights.

The past year has not been kind to Miss Z – she has been unwell almost constantly with various chest infections.

It has meant that we’ve had to come to terms with the fact that she has a life limiting condition.

And it means that I have realized how quickly her health can go downhill.

My greatest fear was that she would become gravely unwell while I was away – and I wouldn’t be able to get back home in time to be with her.

I think it was this fear, more than anything else, which made me drag my feet on booking the flights.

After all, I’ve been away from Miss Z before – both for work and pleasure – and survived, but this felt different.

Everyone kept telling me how it would be good for me to get away, to have a real break, get some rest, some respite from the constant demands of caring for Miss Z.

I knew they were right, but it was hard to let go.

There was also a little bit of fear that Miss Z would cope too well with my absence. What if she didn’t miss me? What if she was just as happy to get cuddles from anyone else?

What if all the work I do every day to make sure she is happy and healthy isn’t really all that necessary after all?

In the end, what finally made me to book the flights was Vegemite.

Being Miss Z’s older sister has meant that Vegemite has had to become independent from an early age.

For better or worse, she has had to take on more responsibility and grow up quicker than other kids her age.

And I’m hugely proud of her for being such a brave and confident girl.

But at seven, it suddenly feels like she is growing up quickly, and with the constant medical drama surrounding Miss Z for the past year.

I’ve missed spending time with her – and soon, she won’t want to spend time with me anymore.

So, at last I organized our trip and after Christmas, Vegemite and I flew to the US. And I got my respite. I ate and drank a lot. I read a lot of books and took a nap every afternoon.

I taught Vegemite how to slide down a snowy hill on a roll-up sled. I proved that I’m really not very good at trivia. I spent time with two of my best friends from school.

And Vegemite got to spend time with the American side of her family and be the absolute centre of attention for three whole weeks.

She also got my undivided attention. We got lots of cuddles (aided by the fact we were sharing a bed) and lots of giggles.

I spoiled her rotten a lot of the time – and we both enjoyed it.

I even taught her how to eat dinner from a vending machine (crackers and crisps first, then the chocolate).

I missed Miss Z – a lot – but was comforted by my husband’s daily updates, which reassured me that she was staying healthy.

And, I realized, my absence gave him the opportunity to enjoy some one-on-one time with Miss Z – something he doesn’t often get with me always on hand to care for her.

Letting go isn’t always easy as a parent of a child with special needs. We become so accustomed to managing and caring for our child that we become convinced that no one else can do what we do.

However, sometimes it is important to loosen our grip a little.

For me, it gave me the opportunity to enjoy some special time with Vegemite and let Miss Z spend some special time with her father.

And it gave me the chance to come back, refreshed and ready to tackle 2016 and make it our best year yet.

In the early days, this was an easy vow to keep. She was a baby. She was small and easy to carry.

Sometimes I strapped her to my chest in a baby carrier. We spent a weekend in Sydney with her in her carrier – visiting the Opera House, the aquarium, the Botanical Gardens, eating in nice restaurants.

Other times, I took her in her stroller. Feeling lonely and isolated in the early days, it was often a relief just to get out of the house and push her around a shopping centre or for a walk in the park.

However, as she has become older, she has become less portable. At four-going-on-five years old and weighing nearly 20kg, the days of carrying her around are gone.

Gone too is the easy to fold up stroller – replaced by a much heavier and more cumbersome special needs model.

But something even more fundamental has changed: Miss Z has become a homebody.

She is happy at home and shows no desire to go out and do things or meet people.

She never seems to feel the need for a change of scenery or even a breath of fresh air. She is quite contented to spend the entire weekend at home with her family.  She is happy to go to school.

She tolerates walks in the park (so long as she keeps moving – stopping is not an option). We often go to Sunday brunch at the same café, and she’s generally OK with that, too.

But any place new, crowded or noisy is not tolerated.

Shopping with her is difficult at best. She hates grocery stores – I think because the chiller cabinets make her cold – and will fuss, grumble and scratch her ears her whole time in the store.

Shopping malls get a similar treatment – she is worse than my husband in demanding we get in and out in record time.

Small shops are nearly impossible as they pose accessibility issues as well as not being well tolerated by Miss Z.  She gets frustrated quickly in most restaurants and cafes.

I can’t really blame her for this, since she’s tube fed, and watching other people eat and drink must be fifty shades of boring.

Sometimes I can jolly her through a quick meal by holding her on my lap – although as she grows, this becomes more of a challenge.

Her lack of tolerance for public places means that I haven’t been daring enough to try anything that might push her boundaries, such as taking her to see a movie.

Visits to museums or zoos or similar places tend to be brief, planned well in advance, or involved my husband and I taking turns comforting her, while the other explores with Miss Z’s older sister.

It will come as no surprise that she isn’t much of a party girl, either.

But her preference for home and her obvious dislike of going places poses a conundrum.

Do I take her out – even if she doesn’t like it? Or do I leave her home – even if it is depriving her of an experience?

I want Miss Z to get out, see the world, and try new things. If we never try anything new, then we will never know if there is something that she might really enjoy.

At school recently, they discovered that Miss Z loves to paint. I didn’t know this because I had never tried to paint with her.

What if there is something out there that Miss Z loves as much as painting – orchestral music or aquariums or movies – that we are missing simply because we haven’t tried it?

The activist in me rails against the idea of keeping Miss Z at home.

After all, how can I expect people not to stare and to become more comfortable around people with additional needs if they don’t see them out in their community?

I want Miss Z to be out and active in her community. But she wants to be at home. And her opinion is important, too.

he faces so many challenges in her daily life, why can’t she be allowed to stay home and relax if that is what she wants?

Why should she be expected to be a flag carrier for the disabled community?

Or endure an assault on her senses, simply because I think she might enjoy watching a movie in the theatre, rather than in the comfort of her own home.

It is a balancing act, and we don’t always get it right. And I doubt we ever will.

But I hope that don’t give up trying, because on those rare occasions when she surprises us by enjoying something we didn’t expect she would, it is golden.

This is a difficult blog to write because I am simply not sure that I can do justice to the subject of this narrative.

It was a struggle to pick a suitable title, because the likes of ‘Supergran’ or ‘Great Granny’ simply seemed insufficient at embracing the magnitude of my message.

It is certainly true that we don’t fully appreciate our mothers until we become mothers ourselves.

Over the past three years I have come to appreciate and depend on my mum more than I could possibly have imagined.

Mum has a monumental influence on my family’s life.

She is a resource that I simply could not function without.

Jenson would be less happy, life would be less organised, and, well, I would be a bit of a mess.

As the mother of a three-year-old with multiple and complex needs, I have to rely on others more than I would like to.

This is a sentiment that will be very familiar to many readers.

My gratitude towards my mum for the reliance I can place on her is, quite simply, boundless.

I feel fortunate beyond belief for having my mother in my life, and for the amazing grandparenting role that she plays for Jenson.

From the day of diagnosis, when my world was irrevocably turned upside down, she has been right there by my side.

She has nurtured, embraced and cherished Jenson.

At no point has she wished for him to be, ‘normal’; for it is his very differences that make him so special to her.

She loves him unconditionally and she advocates for him and protects him like nothing I could have imagined.

My emotions fluctuate on an hourly basis from euphoric to miserable and with no prior warning.

My mum moderates, mitigates and pre-empts these moods in a truly deft fashion.

If I am glum because we have experienced a set-back, Mum will pick me up, shake me off and get me back on track.

If on the other hand, Jenson has just amazed us with a new skill, Mum is right there beside me shouting from the rooftops.  She experiences the very same raw, visceral emotions as me.

I don’t need to tell her what I am thinking; she simply knows.

I don’t need to tell her how I feel; she feels it too.

The emotional connection between Mum and Jenson is unparalleled.

His face lights up when she arrives, he cries when I prise him away to leave, and they exist in their own harmonious little bubble while they are together.

Mum’s been to the school of difficult parenting, having raised my sister and me, and she understands the arduous nature of this thankless journey.

She appreciates those powerful feelings of wanting to protect and provide for your child.  She knows how my mind works and can second-guess my reactions, my emotions, my thoughts.

She knows Jenson as well as I do.

She watches me parent him and she absorbs like a sponge, she locks in to my techniques, my preferences, my strategies and she takes these forward in her grandparenting.

She knows when to object and question my judgement, and when to accept and assent.

Mum is sensitive to when my husband and I need quality time with Jenson, even though I know she is eager to see her grandson.

She knows that we need occasional romantic nights out, and her offers of babysitting flow in abundance.

Attending a plethora of appointments is tough, especially while holding down a job.

And as we all know too well, they don’t make it easy for us, like giving lunchtime appointments to a two-year-old, or clinics that are running an hour late with a waiting room full of 20 agitated children and a modest supply of (mostly broken) toys.

Having Mum there not only makes things easier, but dare I say, sometimes even fun!

Whether it is gathering up the pile of detritus that we have dumped in the consultant’s office, or wiping up yoghurt from the floor of the waiting room, Mum is my wing-man.

She rearranges her own life to be there for us, to attend the appointments, to pick him up from nursery when I’m running late, and to look after him at short notice when he’s poorly.

I struggle to ask all the questions I want to ask, while I’m being distracted by Jenson playfully asphyxiating the poor doctor with his own stethoscope, or empting the clinical waste receptacle all over the floor.

I then struggle to remember all of the important information that has been departed on to me, for the very same reasons.

With Mum there, Jenson has his favourite playmate, and I have a dependable second set of eyes and ears.

I also have a second line of defence in a difficult conversation, a second opinion where things are not straight-forward, and an emotional backbone when I am dealt bad news and need a cuddle or tissue.

An eternal pillar of strength, but also an objective and rational third-party, Mum’s presence at appointments can be invaluable.

Carrying the bulky supply of feeding, changing and medical provisions along with the ever-increasing stock of entertainment resources, a second set of hands has proved to be indispensable.

Remembering all of these items, where I am prone to forgetting, is equally key to a successful trip out of the house.

My mum excels at all of this.

She is the most organised, pragmatic and systematic person I know.

Another important point about Mum is that she just gets on with it.

She cares not what folk think; she takes Jenson to Rhyme-Time, playgroups and soft play, immune to the vast differences between him and the other children, and insulated from the looks and comments.

All hail the bank of Mum!

If I was to add up the amount of time that Mum has spent caring for Jenson and equate it to even the humble salaries commanded by carers or pre-school practitioners, I would be indebted to her for the rest of my life.

Mum looks after Jenson for two full days per week and this does not even account for the additional appointment she attends, or the times when she looks after him so that my husband and I can have a night out.

What makes this fact all the more staggering is that Mum gifts her time to Jenson wholeheartedly for the love of that little boy, and for no reward other than to see him grow and develop, and spend time with him.

Mum is the most innovative person I know.  I have lost count of the number of times that I have been greeted with another new skill learned through Mum’s imagination, resourcefulness and tenacity.

Perhaps it is down to her former life as a PE teacher, but Mum has an amazing ability to create ingenious ways to push Jenson forward, physically and cognitively, yet keeping fun at the fore of all activities.

One day it might be a new set of colourful homemade flashcards, the next it is a novel technique to get him eating a new food.

Mum loves Jenson and Jenson loves Mum.

Simple, pure, divine and unconditional love.

And Mum, I love you too!

I know this because I felt all those emotions and more when, at the age of 20 months, Miss Z got a gastrostomy (G-tube).

I have a photo of Miss Z and her sister, taken on Pancake Day – both girls with a pancake in front of them, which they ate with enthusiasm after I’d taken the picture.

Five months later, Miss Z had lost her ability to swallow and was being fed entirely through a nasogastric tube.

Even now – three years later – I look at that photo and wonder what I did wrong, what I could have done differently so that Miss Z would be consuming pancakes with the same zeal today.

However, it was also an easy choice.

In fact, by the time Miss Z got her G-tube, we were desperate for it.

Miss Z was no longer able to take anything orally and she hated the nasogastric tube with a passion.

And although Miss Z has little purposeful use of her hands, what ability she has was employed, 24 hours a day, 7 days a week.

With the sole objective of pulling the tube out of her nose.

For a girl with no fine motor skills to speak of, she became surprisingly adept at snaking a finger between her nose and the tube and giving a mighty tug.

After a few months of making regular trips to the hospital, where the nurses would wrap Miss Z in a sheet and hold her down to re-insert the NG tube while she screamed;

we were begging for a G-tube.

And when Miss Z finally got it, life became so much easier.

Suddenly, we could focus on other things – not just getting nutrition and medications into her.

For three years, Miss Z did amazingly well with her G-tube.

Then the chest infections struck.

Tests showed that Miss Z had severe reflux and was aspirating food and vomit into her lungs, which was contributing to the chest infections.

We were given two options by the doctors.

She could have a gastrostomy-jejunostomy (G-J) tube, which would allow us to feed her directly into her small intestine.

Which would stop the reflux and vomiting because there would be no food in her stomach to bring back up.

Or she could have a fundoplication, which wraps the top of the stomach around the oesphogus, making it more difficult for the contents of the stomach to come back up.

I agonized over the decision.

Suddenly it felt like we were right back where we started three years ago – making decisions for Miss Z that I didn’t want to make.

And wondering how we had got to where we were and what I could have done to prevent it happening.

In the end, the decision was taken out of our hands.

The surgeon decided that Miss Z’s stomach was too small for a fundoplication, so a G-J tube was the only option.

Agreeing to go ahead with the G-J tube felt terribly sad.

Miss Z’s condition is life limiting and I felt like we were taking another step towards exhausting all our medical options.

I also worried that the G-J tube, which requires continuous feeding, would affect Miss Z’s quality of life.

She is an active little girl and loves swimming and rolling on the floor – activities that aren’t necessarily compatible with being constantly connecting to a feeding pump.

I also worried about the extra strain it would put on our family.

Another responsibility, another thing that we have to deal with if we want to set foot outside the door with Miss Z.

And it is another thing that can go wrong.

I worried about managing it so much that I started to have dreams about making mistakes with Miss Z’s feeding.

In my dreams, Miss Z would get unwell and I would be wracked with guilt while everyone around me accused me of getting it wrong.

Of forgetting, being incapable of looking after my own daughter.

It was with a heavy heart that I took Miss Z for her surgery.

I knew it was the right choice, but it wasn’t a happy one.

The surgery was quick and easy – I barely had enough time to get myself a coffee and muffin from the hospital café before the doctors were ringing to tell me that all was well.

They used the same stoma (hole in her tummy) as the G-tube, so it was just a case of putting the new tubes in the right places.

She woke up happy and didn’t show any signs of pain. Once she was awake, the dietician arrived to create a feeding plan.

We had to slowly increase the rate at which she was fed to make sure she could cope.

However, once we hit the target rate, she would be able to have 7 hours a day free.

This was a pleasant surprise for me, since I’d expected her to be connected to her feed for 23 hours a day.

After a bit of begging and cajoling on my part, Miss Z was sent home that evening – happy and well.

The next week was a busy one, since Miss Z was starting school and we were adapting to a new feeding routine.

I was so focused on the start of school, getting the routine right and figuring out how to make her feed pump and formula more easily transportable,

I didn’t even think about how Miss Z had improved with the G-J tube.

And then, on Saturday afternoon, Miss Z pulled out her G-J tube.

I don’t think she did it intentionally – it was more likely to have been an accident when she was rolling on the floor.

We went back to the hospital, but because it was the weekend and the G-J tube needs to be inserted under general anesthetic using a special type of X-ray, they couldn’t put it straight back in.

So, she was sent home with a temporary G-tube and plans to schedule the procedure to reinsert the G-J tube sometime soon.

It has been that little step back that has made me realize just what a big difference the G-J tube has made.

It has stopped her reflux, which has made her chest sound much clearer. Her breathing no longer has a rattle to it.

She sleeps soundly through the night without being woken by coughing or vomiting.

With the G-tube back, all our progress has been lost.

She is miserable. She is retching throughout the day.

Her cough keeps her awake at night and she requires regular suctioning. Her breathing once again sounds like Darth Vader.

And despite my best efforts, she vomited all her medications this morning.

And so, I’ve been on the phone with the hospital today, pressing them to squeeze her into the surgical schedule as soon as possible.

I may not have been enthusiastic about the G-J tube, but I’ve quickly learned its value.

It may not be what I originally wanted for my daughter, but it is what she needs and it improves her quality of life.

And that, in the end, is what is truly important.