My sister and are used to being separated by many miles – when we lived in the States, they were in the UK.

Well, we each have adorable 5-year-old girls.

Our youngest, Brielle, whom I often write about, is actually a few months older than her cousin Sophia, as she was born very prematurely.

For Sophia and her siblings, this was their first opportunity to see Brielle in person (not FaceTime), and interact with her.

They were very curious about her cochlear implants, her special way of eating, her unusual modes of mobility and fascinating equipment like her walking frame and chest therapy machine.

They all were so patient and gentle with her!

Possibly a little intimidated!

Their mum and I explained things to them in simple terms.

Sophia and Brielle had great fun at the playground, swinging side by side and holding hands.

She would help her cousin walk by holding onto one of her hands while I held the other.

One day at our house, they made a game of pushing Brielle around and around in our big arm chair, much to her delight and smiles. She doesn’t talk, run about, or play conventionally as they do.

So… they figured out what way she DID PLAY, and happily engaged with their disabled cousin.

They figured out a different kind of playing with Brielle.

Brielle enjoyed the company and noise of all her cousins and sisters playing. There sure are a lot of them when we all get together.

She loves to get in the thick of activity, and never wants to miss out on the action!

It was really sweet on the cousin’s last night over for dinner, all the kids got together and recorded their own silly video inspired by the ‘Active wear’ parody.

It made my heart happy that Brielle’s sisters included her in the video too.

They valued her being in on the action.

She had no clue what they were doing, singing and acting and using a phone to record their video.

She wouldn’t have minded being in the other room scooting about on her new car or playing with her blocks, being independent and in her own wee bubble.

But it would have bothered me.

You see, although Brielle is developmentally and socially not at all at her age level, she needs to be included.

As her mama and number one advocate, I’m so thankful for my daughters, my nieces and nephews for coming to her level, and figuring out how they can include her, and figuring out a different kind of play.

Waiting for blood test results, EEG results, waiting on medications to come up from pharmacy, waiting for the consultant to come, waiting for a Plan.

It’s the pattern for our lives, and it acts as an infuriating pause in our lives.

Time going too slowly and not allowing us to get on with the crucial business of living.

For all his disabilities, Sam is a 5 year old boy who hates waiting as he gets bored.

While we try to entertain him as best we can, the waiting is still as hard for him as for any child.

For many of the battles, he is blissfully unaware of how hard Mummy and Daddy are fighting for him..

He may hate being stuck in a clinic waiting for an appointment, but at least he doesn’t have to deal with the inevitable battles to get appointments through in a timely manner, or having to chase up equipment promised months ago that hasn’t materialised.

This time, a different hospital. Waiting to see if VNS surgery will go ahead.

My gorgeous boy. He looks so little, so young, and so fragile in the enormous bed.

With his SATs monitor display glowing softly in the corner of the room, monitoring my little mans oxygen levels. They’re not as high as usual.

We’ve waited three years for this day to come; its been a fight to get to this point and now we wait to see if the risk of surgery outweighs the risk of delaying.

He had a cold a week ago, it developed into pneumonia.

We’re almost certain surgery won’t go ahead and were reluctant to bring him in, to put him through another two days of waiting in hospital.

But it’s a Bank Holiday, so waiting is inevitable as the anaesthetist and surgeon weren’t in when we arrived on the ward.

A few hours later, the decision is made to delay.

It’s a mix of emotions – relief that he won’t have to go through surgery and its aftermath while still not 100% well, and a level of frustration that is visceral.

We know it won’t be long, we’ve waiting three years after all, whats another few weeks?

And so, the waiting continues.

It was just a regular Sunday afternoon, we were returning home from Church.

Like always we parked up round the back of the house and proceeded to walk up the steps into the yard.

Only this time Tim fell up the steps carrying Zachariah, leaving Zachariah to fly out of his arms and hit his head on the stone floor!

The noise this made will stay with me.

I dropped everything I was holding and ran so fast to scoop him up into my arms.

In an absolute state of panic I just cradled him and kissed him telling him everything was OK, yet I forgot to check Tim was OK.

I rushed inside to take a seat and check Zachariah over who was hysterically crying!

Tim followed us in.

With no visible markings, we decided it was still best to get him checked over.

Given the all clear from the doctors we looked on the incident as a miracle, I mean how could he crack his little head on the concrete floor and come away with no damage?

Our little boy was so blessed to have no bruise, bump, scratch or graze.

His Daddy wasn’t too bad either, coming away with just a few marks.

Needless to say, I am utterly traumatised from the whole thing.

I keep experiencing it over and over again in my head and get very anxious when it comes to us carrying Zachariah to and from the car.

Seeing my boy look so helpless has made me see his disabilities more clearly.

By this I mean, I have learnt to look past Zachariah’s disabilities and just see him for who he is, however seeing him fall like that and have no reflex or anything broke my heart.

It highlighted just how much he relies on his mummy and daddy to do everything for him.

At that moment of time, Tim couldn’t have done anymore for him than he did, he had tripped up the step, grabbed onto a rail which broke and he fell, it was just one of those really unfortunate things.

An unfortunate thing that has screamed so loudly how much we need a more accessible home.

After chasing up the housing situation, and getting no further with it, we are all left feeling a little frustrated and out of our depths with it all.

Until recently, we have been more than grateful with the house we have, but the reality is as Zachariah grows, his needs grow also, this demands the need of a more accessible house and appropriate equipment.

I’m trusting that a house comes up soon and this horrible event can be a forgotten memory.

I’m an eternally optimistic person by nature. I like to think that my almost 6 year old will sometime-eventually-learn how to eat.

I often get asked by family, friends and strangers alike “will she always be tube-fed?”

Well, my heart wants to immediately respond in confidence and full assurance “NO! She’s going to learn how to eat!”

I am clinging to the hope, the sometimes distantly looming hope… that she may eventually, in her own time, decide and learn how to eat and drink by mouth.

Sometimes I feel guilty or bad, that we haven’t done and aren’t doing everything we can to help her learn to eat.

Negative internal voices sometimes tease: you must be doing something wrong, surely she should be eating by now!

But in all honesty, I don’t know what more we could have done with her or are doing.

It can be downright exhausting – feeding therapy and everything that goes with tube-feeding your child.

Brielle has always depended on artificial enteral feeding, since she was a teeny premature baby weighing just 810g. Her nostrils were too small to pass a tube through for the first few months, so she needed an orogastric tube initially.

She came home from hospital six months later with a gastrostomy tube.

We’ve worked with so many specialists and therapists. She’s even been on an intense feeding program at the Children’s hospital.

We will continue to work with the speech and language therapist, and offer her oral stimulation and pureed food and thickened drinks as she tolerates.

I really just don’t really know if she’ll always be tube-fed. I certainly hope not.

Eating is such a social and fun everyday activity, and it would be so lovely to see her enjoying her food by mouth.

Oh how I would SO LOVE to do away with all her syringes, extensions, replacement buttons, and everything related.

I would love her to eat like her big sisters.

But do you know what? She may never be able “eat”. And that is ok.

We just want to give her many opportunities, and see where she goes with them, in her own time.

One thing we’ve learned with Brielle is that she will set the pace and decide what she wants to do.

Our job is to support her, love her, open up the world to her, and see how she blossoms.