We are permanently tired, aching from lifting, exhausted from sleep deprivation.

And that’s the time our minds go for a walk into the darker recesses of our psyche and start to poke things that should be left to sleep.

Having no firm diagnosis is incredibly hard and it is too easy to think this could be due to something you did, or didn’t do. That if only you’d done x, your child would be OK.

At times my mind is a whirlwind of grief, anger, fear, disappointment and loss.

People told me and Sam’s Dad that time is a healer, we’d overcome the grief and move forward as a new family of three.  Time does heal and it has done, but I don’t think we will ever fully stop grieving.

Because every so often when a friends child does something new, or when my wonderful niece wins a race at schools sports day, there’s a little voice in my head that takes a deep sigh and whispers, ‘what if….’.

The other one is more self-pitying, ‘if only…’

This weekend we had my family round with my niece. This child is incredible, she adores her cousin and doesn’t view him with pity, or see him as anyone other than the wonderful little boy he is.

She keeps telling me she’d really like MORE cousins, and I keep thinking right.

But the truth is it hurts to see how much less Sam can do than his peers.

And the, “What ifs..?” keep coming to haunt me.

It’s getting a little easier now, after finding out that Sam almost certainly has a genetic basis for his issues I know it’s not specifically something I did that caused this…

But the guilt is still crippling because I know that we gave him his genetic makeup. And with it any faulty/damaged genes that he may have inherited.

It feels like I’m on some sort of merry-go-round, where my brain struggles to accept that some things just ARE, and all that can be done is to accept them and work with it.

Ever thankful for Facebook, today it has given me more than a little bit of peace – being able to chat to people I may never meet but who share the same battles and triumphs as me and mine is more than cathartic.

It’s essential to my sanity.

And today there was a little link to remind us of ways we find happiness daily; many were lovely and simple, live well, eat well and be kind to yourself being the main focus.  And it got me thinking.

Over the past few years we’ve said goodbye to far too many beautiful, brilliant people (both children and adults), often taken before their time, and while that heartbreak reminds me of how fragile we all really are it also serves to reinforce how precious life is.

I get tired of people who constantly comment on how hard our lives must be.  Or how difficult it is.

Yes, it is difficult and, frankly, it’s all but bloody impossible to keep going at times; but there is so much joy, laughter, and fun in there too…  I’m bored of being miserable.

So, here’s 10 things that make me happy:

1. Spending time cuddling my boy. Nothing more complicated than feeling his little body close to mine, feeling the rate of his breathing and smelling this perfectly formed little miracle nestled in my arms.

2. Walking the dog. Just walking really, as long as its outside in the fresh air.

3. Jumping in puddles. Sorry, but there is a kid inside me that still *loves* jumping in puddles. If I can splash my husband at the same time, even better!

4. Reading. No, I do not mean Facebook. Or Twitter. I mean ACTUALLY reading. Just allowing myself to get lost in a book is therapeutic enough.

5. Doing some form of craftwork. OK, I have my own cottage business doing jewellery and crafts, but the rule is simple. Find something you enjoy doing and do it.

6. Watching a movie. With popcorn. The popcorn is non-negotiable.

7. Breathe. How many of us actually breathe properly? I mean *really* breathe – till you feel like you’ve filled your body with air, then slowly breathe out again? Try it. It relaxes all the main core muscle groups and tops you up on oxygen. Can’t be a bad thing. Ditto to singing

8. That smell after rain.

9. Spending time with my other animals. Not just the cats and dog, but the fish and the chickens. If I’ve had a really rough day, 5 minutes spent watching the chickens as they happily cluck their way around the garden always makes the world feel like a better place.

10. Being kind to others. Sometimes a simple smile at a stranger is all it takes to turn someone’s day from bleak to brighter. Be mindful of other peoples moods, they may also have just had the day from hell.

There. Feeling better about life already.

Too often we read articles about the lows of special needs parenting. The sadness, envy, guilt, anger, despair, frustration, anxiety: it reads like a list of 7 deadly sins.

It’s entirely understandable to have these feelings: we all do, and I agree that it makes us all feel comforted to know we are not alone in having these feelings.

We even share and repost these articles on social media in a vain attempt that the rest of the world might have an insight into our lives!

However, I believe it is really important to recognise and celebrate the incredible highs that we experience too.

I also think it is crucial that those people close to us are aware that we have these feelings, and that actually, life IS good.

Before entering the world of special needs I would have looked upon a family such as mine with pity and sympathy, and I would have felt relieved that it wasn’t me that had been dealt that hand.

By sharing our positive experiences and emotions, the people around us are all the better for knowing that we don’t need their sympathy.

That in fact, we experience feelings that they do not, cannot and will not experience.

And actually, it is them that, at times, should feel envious of us.

And this is why:

1. Joy

When your child achieves something that six months ago you could not have dreamed they could achieve, that feeling of exhilaration is amazing.

It is often the most minor of things, but to you, it represents so very much.

There is a definite incremental shift in our capacity for experiencing excitement from everyday life.

I suppose it’s simply an enhanced appreciation of the joys of life resulting from the awareness that nothing can be taken for granted.

The absolute jubilation I experienced the very first time Jenson demonstrated the coordination to bash a xylophone with a beater would challenge the ecstasy experienced by a lottery winner.

2. Pride

I am so proud of Jenson and I frequently show him off.

True, the feats that I am demonstrating to others would be easily overshadowed by Jenson’s peers.

However, as parents of special needs children, we have carte blanche to show our children off when they achieve the most innocuous of things.

This is an extra special bonus that came with having our children.

At two and a half, while Jenson’s friends are learning the third verse of, ‘Mary had a little lamb’, I am proudly displaying his new skill of clapping his hands.

3. Humour 

It’s 6:30 am and I have been up for one hour.

I’m wearing yesterday’s underwear and bags under my eyes.

The to-do list is longer than my arm and we have run out of Jenson’s prescription.

Matt is running around stressed because he’s late for work.

I would pay quite a sizeable amount of money right now to crawl back under my duvet.

Lo and behold, just when I start wondering how I’m going to get through the day, Jensen lets out a chuckle that would bring a smile to the most miserable of folk.

I’m not sure what he’s laughing at, and I don’t think he really knows either.

Perhaps the animal noises coming from his toy.

Matt and I laugh in response.

Impossible not to, it’s contagious.

He laughs at us laughing, seeing the response he has caused, and feeling proud of himself, he ramps it up a notch.

We laugh louder.

He chuckles harder.

The avalanche effect is born.

We are fixed.

Today is not going to be so bad after all.

4. Appreciation

A new-found appreciation of the little things in life, such as relaxing in a café with a cup of tea, having an uninterrupted night’s sleep, or going on a family picnic that is idyllic rather than bumbling chaos.

Also, of course, the appreciation for the wonderful people in our life without whom we could not function.

5. Awe

We are in awe of our children.

The things that they have to endure on a daily basis astonish us.

Just when we are at tipping point, they pull another one out of the bag.

Their ability to absorb so much that life throws at them, whether it be physical pain, or dealing with everyday life that conflicts with their sometimes irrational requirements.

We are in wonder of their resilience.

I was dreading taking Jenson for his echo-cardiogram on his heart.

He is severely sensitive to being touched and prodded, especially by strangers.

I had been fretting over this for days, thinking over the possible ways to appease him and keep him still throughout the 20-minute ordeal and avoid sedation.

After some minor wriggling, and getting used to the cold jelly and strange probe, Jenson lay back in my arms and listened to a story.

There he stayed for the whole 20 minutes as if he subconsciously knew it was for his own good and was overriding his instincts to fight and resist.

I could physically feel his fear.

I walked away from the hospital that day in awe and wonder.

6. Humility

Through our journeys we are exposed to a realm of children with a range of different issues.

We frequently experience feelings of humility towards families that have a terribly tough time and are astounded by the resilience they show.

Equally, we are often in a position where we rely on others more than we would like; whether this is friends, family or health professionals.

We are so very grateful for the extra mile that they will go, to make our day better.

A glass of wine with a friend when it’s been a tough day, even when she was due at work an hour ago, an extra half an hour therapy when the physio’s shift is over, or a box of goodies in the post from a loved-one, ‘just because’.

Jenson took a while to settle into nursery.

He was out of his depth to some extent with all the other ‘ordinary’ toddlers running around rambunctiously.

Jenson’s key worker was aware of my protectiveness and concerns, and she would call me at the same time every day to update and reassure me.

Despite the other children in her care, she would hand him over at the end of the day with a verbal account of each and every thing he had achieved, every ounce he had drank, who he had played with, what he liked and didn’t like.

I felt so humble and grateful that she reached out and recognised my trepidation; she made those two days a week so much more bearable.

7. Togetherness

Our children have a role in our families that could not be replaced.

They provide us with a feeling of solidarity.

We go out of the house as a family, even when it would be so much easier to stay indoors, hiding from the world.

On days when things are tough, we would rather be together facing the elements, than alone, functioning separately.

On weekends, my husband loves to take Jenson to the supermarket.

This is a chore that I avoid due to my irrational fear of attracting negative attention in a situation where I cannot escape.

Matt, on the other hand, would rather be together, with his boy, and face those challenges.

His positive attitude translates into a positive experience, and they inevitably have a blast!

I love seeing their naughty looks on their faces when they arrive home as if they’ve been up to mischief.

It’s a lonely ol’ life sometimes.

Between near constant phone calls to agencies, doctors, social care and nursing teams and the rest, it’s not really occurred to me just how little I’ve actually seen of other PEOPLE this week.

Sure, I’ve spoken to a lot of them (shouted at a few) but not actually SEEN anyone other than my husband and son.

Even at work.

And despite what people say, the majority of people we interact with in our working and personal lives outside of special needs really don’t have a clue what life is actually like for us.

The very people who wax lyrical about how they want to help, and that we just have to let them know what they can do to make life easier are usually the ones who put the obstacles in our path.

The trouble is; they just don’t get it.

They aren’t being malicious, it’s just that they have no clue.

For example, yesterday I found out that Sams school holidays are 7.5 weeks long this summer….

7.5 WEEKS.

I have absolutely no idea what we’re going to do to ensure he’s cared for and safe during that time.

And yet somehow we have to carry on working because through no fault of our own we’ve had to use all our annual leave allocation up already due to hospital appointments etc.

At our most recent meeting, our lovely nurses and social worker were shocked that we’ve had to use our holiday allowance to cover hospital appointments etc; no-ones forced us to do that though, but we don’t have a choice as taking unpaid leave isn’t an option.

It is becoming increasingly difficult to juggle life and work.

Outsiders to this life do not understand what an impact special needs has on the whole family, and that needs to change. We cannot just ‘switch off’ and leave our home worries at home – they are part of us and come with us wherever we go.

Having family support makes a phenomenal difference, all too often however that support is not there or is there on a ‘we only want the fun parts of seeing the child, not the difficult bits’ basis.

Sorry, my son has severe epilepsy.

The seizures, medications and therapies kind of come together with him as part of the package.

Sadly.

It breaks me that he has this battle to fight, and it makes it so much worse when I’m having to battle for even basic carers support and rights wherever we go.

I love working, I love my job, but I’m being torn into pieces trying to split myself so many ways.

This morning our social worker called with some good news – our direct payments are being restarted to allow us agency care over the holidays.

It’s only 8 hours but it’s going to be a lifeline.

We are lucky to have a social worker who fights and fights hard for us.

We are also incredibly lucky to have supportive employers…

And the difference it makes to us is phenomenal.

It means we can carry on being parents AND feel useful.

Not everyone enjoys their job, I’m lucky that I do so for me it’s a form of respite.

And it is good for Sam to be able to get to know other people and learn that he can have fun without Mum and Dad there, just like any other child.

So, for now, it’s time for a coffee and a deep breath before the next battle starts.

At first, especially during that haze of new-born fever, you feel like your little treasure really is the best-looking baby that ever did grace this planet.

No other baby could compare!

It is a credit to you to receive these compliments, after all, you created that little cutie, out of your own DNA, and why indeed should you not feel immensely proud?!

As part of my arduous yet enriching journey through Jenson’s first few months of life, I have so far been honoured to meet many babies and children who probably, in reality, do not get showered with such niceties.

Why not? Because they don’t look quite right.

They don’t meet that stereotypical norm that we are programmed to accept and expect in society.

They don’t resemble the cute squishy picture-perfect little pickles that we see on Pampers packs or on baby formula adverts.

What makes these children less deserving of compliments?

Jenson is a very special and unique child who has a multitude of physical and developmental problems, but as fortune would have it, he is (to the untrained eye) a ‘normal’ looking baby.

And in being a ‘normal’, looking baby, he is in receipt of many a sweet compliment.

It is only since being exposed to the less fortunate children around us, that I have been less allured by these comments than I used to be.

You see, I would give anything to swap Jenson’s deep blue eyes and button nose for a brain that is developing properly.

To exchange his mass of shiny floppy hair for a straight spine.

I would sacrifice his scrumptiousness for the sake of him being able to look up at me and say ‘mummy’.

If a baby’s deservedness of praise was measured by their ability to learn, copy, play, speak, walk, then Jenson sadly would have had very few.

And it is these abilities that I would do anything for.

People who really know Jenson share their excitement with us for the remarkable progress he has made to meet milestones and climb metaphorical mountains that we never thought he would reach.

When he achieves the previously unachievable, like negotiating his ride-on car around the garden, eating yoghurt, or bashing a toy with a hammer:

It is the responses to these achievements that we really love, from people that really understand.

So compliment away friends and strangers, but maybe have a thought about the depth of your platitudes and think about what things in a small child’s life really are worth gushing over.

First of all, I’ll give a quick introduction of my son and his daily needs – Aj will be 3 years old in October, and as a result of a brain injury, he has four-limbed cerebral palsy, severe autism, global developmental delays, and feeding/aspiration problems.

He relies on me throughout the day for all his needs (feeding, medications, toileting, dressing, Physio and chest Physio etc..)

He can’t entertain himself, as he doesn’t play with toys, so I’m always trying to find something to help settle his frustrations.

He’s also a hardcore sensory seeker and needs constant supervision because of this!

He has meltdowns throughout the day, these can sometimes last all day, he scratches at faces and legs and bites himself.

He needs to be picked up a lot when he falls over and he loves to be swung and spun around (which takes it toll on my back!!)

Days with Aj are pretty much non stop.

And this is why I absolutely LOVE family fund!

We recently applied for a grant for a family holiday.

We sent off the application in May and not long after, we received a letter saying we had been awarded a grant to go toward a haven holiday! (YAY!)

Immediately after opening the letter I was excitedly checking online, searching for Haven sites, checking dates (what fit in with both mine and my partner’s schedules!) and looking at their facilities.

We managed to book a fully adapted caravan in Wales!

It had a wet room, wide door frames and a ramp outside!

Something as simple as a week away with the family may not seem like much to some, but for us, it was literally a life saver.

It gave us the chance to have fun, fun without worrying about what appointment was next.

We went swimming on the site daily (my son LOVES the water, he feels so free whilst he’s in there!)

We visited beaches, took him to the arcade twice a day to play on his favourite ride and we had days out, he even got to ride a pony! (With lots of help from his daddy!)

All these things we wouldn’t have been able to afford to do if it wasn’t for the help from Family Fund.

Being so busy doing ‘normal’ family things took my mind off worrying about my son’s upcoming operation for a gastronomy insertion, which I’ve been driving myself crazy over!

We smiled, we laughed and we felt a little bit more ‘normal’ during that week away.

So, thank you, Family Fund.

You are incredible.

Well it’s not.

Don’t get me wrong, I’d never wish for her to be disabled.

This isn’t the path I’d have chosen for her, for me, for any of us. But now we’re on it, we’re making the best of it.

No, no my biggest disappointment is my parents.

My disabled child’s grandparents.

Never did I imagine they would have been such a disappointment.

Never did I imagine that they’d so totally and utterly let her down and let me down.

When we’ve embraced it, they’ve run a mile. When the going got tough, they got going.

The early signs were there that my parents wouldn’t feel ‘comfortable’ with the fact that they had a disabled grandchild.

They struggled to interact with her in any way. My dad even refused to lift her.

It was difficult to ignore comments like ‘This sort of thing never happened in our day.’

‘No mum, it did, it really did. Previous generations just locked their disabled relatives in institutions to be forever forgotten.’

Leaflets about our daughter’s condition were pushed to one side, left unread and eventually dropped into the recycling bin.

I was unfriended from Facebook because I posted too much about special needs issues.

Discussions about her future were quickly closed down, never to be spoken about.

In my family, the rules are simple; do not draw attention to yourself & do not make a scene.

That’s kind of impossible with a child with special needs. Loud noises, flapping and strange behaviours are usually part of the package.

You learn to grow a thick skin, ignore the stares and get on with living life the best you can.

They just couldn’t do it – she was an embarrassment to them. And over time they stopped coming out with us and their visits to our home got less and less.

Excuses were made at Christmas because it was no longer the relaxing event they expected it to be. Birthday cards were put in the post and not hand-delivered with a present as they had been in the past.

Ten years on and we very rarely see them.

It’s sad isn’t it?

I’ve come to terms with it, it still hurts but not as much as it used to. But what I find difficult to comprehend is how they managed to do a fairly good job with me yet could not step up to the mark and be a great grandparent.

It’s not just their practical support I would like, I miss their emotional support too.

They must’ve given me the strength to be a good special needs mum (even if I do say so myself) so how come they are so lacking when it came to being a special needs grandparent?

I love to see grandparents commenting on blog posts, on Facebook, in forums.

If you’re a special needs grandparent reading this post – I salute you.

The very activity of reading this shows you’re involved, you’re interested and you want to learn more.

Maybe you torture your son or daughter with therapy ideas, email them constantly with toys suggestions or articles they might be interested in.

Perhaps you drive them crazy, but please keep doing it because of the alternative… well, the alternative is being like my parents – in denial.

We’re a lovely family, me, my husband and our beautiful daughter who just happens to have special needs.

There’s a lot of love in our family, a lot of laughter, a lot of good times. It can be loud, it can be manic and it can be scary, this special needs journey but we’re determined to have fun along the way.

I just hope my parents don’t regret their decision not to be a part of our family. I hope they change their minds before it’s too late.

Our daughter is our life, our love, and our greatest achievement.

So no her disability will never be my biggest disappointment.

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.

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.