This will be the 1,033rd consecutive day I’ve had little to no sleep.

(My son is almost 3 and has never slept longer than 4 hours at a time).

Helplessly watching my son thrashing around, rocking and crying whilst not knowing what’s the matter or what I can do to help soothe him.

Sleep is something I think a lot of people take for granted!

I know I never thought of it as something to look forward to, that was before I had my son anyway!

Staying awake until the early hours used to be the, ‘norm’, for me, and it was never this hard to do!

Seriously…Where did I get all my energy from? 

Sleep is so important to every one, but possibly even more so for families caring for little ones with special/extra needs.

It is an important part of development.

It’s when the brain rests, recovers from the day and and repairs itself, ready for the next day.

It’s vital for concentration throughout the day, and little people need to concentrate to learn.

And little people with special needs, need that concentration sooo, so, much!

So when your getting less than 4 hours sleep a night, things can get tough. In fact, everything gets tough.

A lack of sleep can make even the happiest of people grumpy, short tempered or just less tolerant than they usually would be.

It puts a LOT of tension on day-to-day family life.

Apparently 50% of all marriages end in divorce.

This percentage jumps to between 80% and 90% for couples who have a child with special needs.

Eighty percent!!

That’s a terrifying statistic!

Parenting is hard at the best of times, but the stress and strains of raising a child with extra or special needs really does put your relationships and even friendships to the test.

Friendships start to wither away when you’ve got no energy to do the things you used to.

Fun days out become more like chores.

You end up having to make excuses to not go because your too tired to function and eventually, friends stop asking.

You don’t want them to stop asking, you want them to understand.

But no one will ever really fully understand until they’re going through the same thing.

No matter how many times they’ve been up all night with their new teething baby.

At least they know that’ll pass eventually!

As with friendships… Relationships can be much the same.

Whilst longing for a, ‘night off’, to go out and/or just spend time with your partner, the minute you realise you have the time, all you want to do is sleep.

A lack of alone time with your partner can also lead to arguments, and those teeny, tiny arguments usually end up blowing up into world war 3 because your both so tired and grumpy!

I complain, a LOT about being tired, but I’m lucky in the fact I have some real friends who’ve stuck around and an understanding partner, who just looks past my grumpiness (or ignores, probably the latter, lol!)

Just getting through the day sometimes without wanting to scream or cry can be a reward in its self.

Keep going mummies… and daddies!

Your doing the best you can.

In both the local children’s Therapy Center and also in the school therapy room, she would almost always spend some of her hour session up on a swing.

Platform swings, log swings, bucket swings – they were all readily available to hook up with carabiners when the time came.

I don’t know if it’s a question of funding and resources, or if the therapists we are working with just don’t place the same value on the use of swings in therapy.

I’ve mentioned to her occupational therapist and physiotherapist how she used to be on swings in therapy several times a week and how much she loved it.

Their response is rather, “Oh, that’s nice,” (moving swiftly on).

Since starting therapy at the development centre here in March, she has not yet been on a swing.

She has a joint visit monthly with OT, PT and Speech.

I have asked to use the swing, but when we were supposed to, someone else apparently beat us to the room!

I am hoping that once she moves into school here this incoming year we will again get some more therapy time on swings.

Brielle is deafblind and has difficulty communicating, along with other health issues.

Swings are great for her because they awaken her vestibular sense and help with her sensory integration.

They allow her to practice sitting with minimal support, and work on her core balance and her muscle tone.

They also encourage bonding between Brielle and the therapist, and open many communication opportunities – reinforcing manual signs and spoken word for “swing, let’s go, stop, want more?” etc.

And they are just downright FUN!

Of course we do avail of all the local playgrounds for swinging fun!

We’ve found some very nice toddler bucket swings and also some larger net basket type swings that she enjoys too.

But a downside to outdoor swings are playgrounds are very weather-dependent!

But what if your biggest wish was just that your child with special needs didn’t have any of these special needs?

What if your biggest wish that they were a typical child?

Is that a healthy continual wish for us to have?

Or are we just setting ourselves up for perpetual disappointment because that wish most likely won’t ever come true?

Experts would say that these wishes for our children become fantasies and as such we have a hard time letting go and finding acceptance and peace with our children’s conditions and diagnosis.

When we feed these fantasies we are promoting frustration, anxiety and disappointment when we don’t see our children being able to ever overcome all of their challenges.

Wishing things were different isn’t entirely bad.

It’s okay to acknowledge mentally every now and again the, “What if’s..?”

But we can’t live in that space or it becomes consuming and can contribute to continual heartbreak because we wish for something that just will never be.

So how do we gently give ourselves permission to let go of these wishes but still balance that beautiful hope that we have for our children?

Here are some easy steps:

Live in the Moment 

Take intentional time to recognize the blessing and beauty of your child with special needs.

Be in utter awe of them.

Watch how he or she moves, smiles, laughs or communicates and remember how incredible that is.

No matter what that looks like, or how messy and complicated that may appear to the outside world.

See everything that your child is and does as a miracle – a living miracle.

It will take some of the sting out of wishing that things were different by focusing on the here and now.

Embrace your child in a hug and absorb their sweet scent, a nuzzle near their neck and hold them tenderly in your arms.

Just the gift of them being here on this earth with you beats any wish that you could ever have that things would be different, because they are exactly how you know them to be.

Find Appreciation 

Being thankful and grateful for the smallest of gifts and blessings can be an excellent distraction from wishing things were different.

It can start small, like being thankful that your child’s speech therapist shows up every week on time, to big things like your child hasn’t had a seizure in six days.

Recognition of Self-Compassion 

This is the big one.

Wishing things were different can stem largely from self-blame about a situation.

And special needs parents hold onto a lot of self-imposed guilt.

If only I had birthed at a different hospital things delivery would have been different.

If only I had taken more pre-natal vitamins then maybe things would be have been different.

If I had quit my job earlier and gone on bed rest things would have been different.

If I had only not done dishes and turned my back to avoid a life-altering accident things would be different.

It doesn’t matter what we believe our self-blame is – we all do it to some degree.

But we need to all realize that none of this is our fault.

There are a multitude of things that will happen our lifetime that is out of control.

We wish that we had the power to change it, to wish it not be so, but we simply can’t.

When you start to feel like these thoughts are creeping up on you, take a big deep breath and just breathe. The most important thing to acknowledge is things are okay.

My career defined me.

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

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

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

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

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

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

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

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

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

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

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

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

And then another.

And another.

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

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

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

This sometimes led to some fairly ridiculous situations.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It is both easy and hard to accept.

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

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

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

It is my work-life conundrum.

‘Mummy, are you channelling Anger or Disgust right now?’

‘I think Daddy…. Is it Anger?’

‘Mummy, Alex is mainly Sad now, isn’t he?’ (His top lip was wobbling, so I thought probably yes).

Which got me to thinking, has Alex got them all?

You’ll remember that Riley, as a baby, started out with just Joy, who was joined by Sadness and those were the only ones she needed for a while.

Alex, in his sometimes still quite baby-state, had he developed the rest?

Joy

Alex has Joy in abundance.

Sometimes I think he feels the whole world is just there to entertain him!

Which, you know, it does.

He delights in the world my little boy.

Toys that squeak and make a noise… going to bed nightlights that play music… everyone who tickles him… splashing in the pool, in the bath…all make him laugh.

And he still – still! – sometimes laughs so hard he falls over backwards.

He is the sunniest of children.

Unless…

Sadness

Unless… something upsets him.

Then joy turns to… ‘Waaaaaah!’

Loud noises can upset him… being told off very very firmly can upset him…. Food not coming quickly enough upsets him (though that just makes all of us laugh, which probably doesn’t help).

Waking up in the middle of the night with what I can only assume is a bad dream makes him sad… not feeling well understandably makes him sad.

Not. Getting. The. Out. Of. Reach. Toy.

Makes him Sad.

But we are able to make him feel better.

We can cuddle him, stroke him, tell him we love him, find that toy, feed him quicker and Sadness leaves.

Which is (ssssh!) quite, you know… normal.

But then, beyond those two…

Anger

This is primarily directed at anyone trying to make Alex do his physio.

I’ve lost count of the number of times he’s brought out of school accompanied by, ‘He got very angry at me today because we were doing physio!’

By angry, Alex gets very, very red in the face and cries.

But there are no tears.

He’s not upset just really, really annoyed.

And that’s OK with me because – annoying as it is (and it really is) – it’s a developmental stage, a connection; if I do this, they may stop trying to make me do this.

They don’t, but I like his thinking.

Fear

Alex walks beautifully holding on to both of my hands.

If I try to take my hand away, he stumbles, desperately trying to find my hand again.

That’s Fear.

Should I try and get him to slide out of bed when he can’t feel the floor with his feet he will slip and slide very slowly.

Very carefully.

Until he connects with the floor.

That’s fear.

He knows that he doesn’t feel safe.

He may not get that it will also hurt if he mis-steps, if he falls, but he realises when he doesn’t like something, when it makes him unsure, and there’s Fear (and a little caution).

Disgust

Only one word needed here: broccoli.

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

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

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

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

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

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

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

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

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

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

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

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

The first night was a bit like that.

She was unsettled and didn’t sleep well.

And then it happened.

Miss Z settled.

And she cheered up.

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

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

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

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

And she suddenly has so much to say.

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

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

Miss Z has also started to pout.

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

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

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

She is even smiling more.

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

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

She never giggles, but she just did it now.

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

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

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

It also encourages us to engage with her even more.

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

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

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

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

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