I never thought that when my little girl was diagnosed with Global Developmental Delay at 11 months old that I would end up feeling trapped in my own personal Groundhog Day.

Babies are only babies for a short period of time for a reason. It’s bloody hard work and it’s exhausting.

Try having a child stuck at the baby stage for 7 years and I challenge you not to be frustrated, tired and a little bit fed up.

You see, my little girl has a developmental age of a 6 to 9 month old baby.

She’s been at this stage since she was 11 months.

You know that line they chart on the developmental graphs?

Well, hers has stayed stubbornly horizontal at every 6 month review with her Paediatrician for the last 6 years.

In fact, the diagnosis of Developmental Delay is a bit of a misnomer, Developmental Deadlock or Developmental Standstill would be more accurate.

This is despite endless hours of physiotherapy, speech and language therapy, occupational therapy, sensory therapy, hippotherapy, hydrotherapy…

Anyway, you get the picture.

It’s not been for want of trying.

Don’t get me wrong.

She’s has made ‘progress’ but just not enough to push her into the next developmental stage.

So sometimes that leaves me with the feeling of same shit, different day.

And I don’t just mean the nappies.

But yes, when I thought that stage would be long past I’m still changing nappies.

What this means is if you visit us you could be forgiven for thinking we had a baby in the house.

You may be greeted by the pungent aroma of a freshly changed nappy.

You’ll find packets of baby wipes in every room, changing mats stored in the corner.

Nappy disposal bags tucked into pockets and drawers.

Thankfully, I don’t have to pay for them any more – her incontinence is now a medical issue which entitles us to free nappies.

If you’re a mum I’m sure you remember that exciting time of weaning – preparing little pots of pureed fruit and vegetable with love and care, cutting up varieties of food into small chunks.

The delight of watching your little one try new textures and flavours, watching him or her discover this whole new world of food.

6 years on and that weaning stage has lost its appeal – it’s replaced now with a dreading of meal times, tears of frustration, hair pulling and endless worry.

Is she eating enough, how much did she actually get into her mouth and how much was thrown on the floor for the dog.

Will she have lost weight at her next weigh in? Will she be one step closer to having a feeding tube fitted?

I sympathise with anyone who has or has had a windy or colicky baby.

It’s horrific to watch your baby writhe in agony, pulling their little legs up to their tummy and not being able to do anything to ease their pain.

But remember, this time will pass.

For us, it hasn’t.

Reflux is a constant in our lives.

But please don’t think you know what life is like for us.

You don’t!

Your baby had bad colic?

It’s not the same.

My 7 year old may have the developmental age of a 6 month old but she’s the size and weight of a typical 7 year old.

We can’t walk her around to ease the pain caused by reflux, we can’t rock her in her car seat, we can’t sit and rub her back, we can’t just pop her in the bath.

If she throws herself back as another cramp snakes through her body, she’s in danger of breaking the nose or jaw of whoever is holding her at that time.

To move her at all is a two person job or involves the use of the hoist.

Our bath has now been replaced by a wet room.

It’s nearly impossible to ease her pain.

It’s been like this for 6 years.

And yes we’re still as exhausted as we were when she was 6 months old.

Remember back to those days when you proudly pushed your newborn around in a fancy new pram?

Endless strangers stopped to comment on your beautiful sleeping baby.

It was bliss.

Now do you remember how 6 months later when strangers were still stopping to coo at your baby, it was starting to get a little bit annoying?

Your baby didn’t always like the intrusion of strangers, sometimes they even cried leaving you to apologise and make your excuses, ‘Sorry she didn’t sleep very well’, ‘Sorry he’s at that being strange stage.’

Inwardly, you were thinking would you please just leave me alone to get on with my day. Well, that still happens to us.

A pretty little girl in a sparkly pink wheelchair can attract a lot of attention.

She doesn’t like it.

In fact, coping in a busy environment is a big enough challenge for my daughter without a stranger sticking their face in hers.

So, 6 years later and I’m still making my excuses and giving strangers false smiles.

That never ending Groundhog Day.

If I’m completely honest I wasn’t that that keen on the baby stage with my other children.

It can be a lot of hard work for very little in return.

So what keeps us going with our daughter? Well, it’s those little glimmers of hope.

Was that a proper wave goodbye this morning?

Did she actually clap her hands during song time?

I’m sure that noise sounded like, ‘Ma Ma’.

She definitely pushed up through her arms during tummy time. She ate all of her lunch yesterday and wasn’t sick.

Her eye contact has been brilliant today!

All little signs that the hard work is worth it.

That’s what makes it all worthwhile.

Together with the most amazing smile.

A smile that makes up for all those developmental milestones still to be met.

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.