When Miss Z goes into the hospital, I go with her.

We are a two-for-one deal. Hospitals are frightening places at the best of times, let alone when you are a 4-year old girl with a visual impairment and a limited understanding of what is happening.

No one likes children’s hospitals.

They’re not happy places, no matter how many enthusiastic volunteers, visiting therapy dogs, colourful murals or bedside balloons there may be.

It is the stuff of parents’ nightmares – no matter if your child is there with a broken wrist or a life-threatening condition.

No one – apart maybe from the people who work there – actually want to be there.

But, I have to admit to often feeling a huge sense of relief and calm when Miss Z is admitted to hospital.

I relax. I let go of that breath I’ve been holding.

I wouldn’t go so far as to say I’m happy – after all, we are there because Miss Z is unwell – but I find it a comforting place to be.

I know, I know. I read that last sentence and even I think I’m crazy.

Maybe I’m suffering from a sort of Stockholm syndrome – where hostages grow attached to their kidnappers.

Forced into hospital (generally by bacteria, viruses or seizures instead of kidnappers), I develop an attachment to the very place and people who are ‘imprisoning’ Miss Z, and by default me.

Strange, maybe, but true.

As a working mother, my life is constant triage. I’ve got a work deadline, Vegemite has a school event and Miss Z is unwell – what do I do first?

Ballet class, hospital appointment, conference call – how do I do them all at the same time?

Added into the triage mix is a never-ending ‘to do’ list of all the little (and not so little) activities of life: grocery shopping, health insurance claims, dog training, taxes, post office, prescription refills, hair appointments, emails, filing, ordering more formula or medical supplies for Miss Z, tidying, and so on…

But when Miss Z and I are in hospital, all that other stuff is put on hold.

I can pause all those other activities. My focus is entirely on Miss Z and getting her well.

Yes, that does sometimes involve a constant stream of text messages to make sure Vegemite is picked up from school and that work tasks are postponed or reassigned.

But at the end of the day, the responsibility is no longer on my shoulders and (as much as I hate to admit it) the world carries on without me.

That is the source of relief, the feeling of comfort, and the reason for my Stockholm syndrome.

It feels so good to put all my attention and energy towards just getting my little girl healthy again.

I have time to think about what the doctors have said – and even better, to follow up with them when, an hour later, a new question springs into my mind.

When Miss Z cries, I can cuddle her – not sit in my office and try not to listen to her carer calming her.

I can sit by her bedside and watch her sleep to reassure myself she isn’t getting worse, rather than trying to keep an eye on her while making dinner.

I don’t have to second-guess myself regarding Miss Z’s health when we’re in the hospital either. Miss Z has grumpy days, where she does little besides fuss and cry and sleep.

She also has days when she is unwell, where she does the exact same thing.

There have been nights when she has screamed inconsolably for hours for no apparent reason, when she’s gasped and wheezed for breath, when she hasn’t been able to keep medicine or formula down – then come morning she is perfectly happy and well.

I may know Miss Z better than anyone, but I spend a lot of time trying to decide if I should a) ignore it; b) give Panadol; c) take her to the GP; or d) go to the Emergency Department.

I am a mother, not a medical professional, so it can be hugely comforting to be able to call a nurse at the press of a button and ask for advice on the spot.

I’m not saying a trip to the hospital is on par with a yoga retreat – far from it. I would do just about anything if it meant that Miss Z never had to darken the door of our children’s hospital again.

But, whether it is Stockholm syndrome or just a funny kind of respite, being here is not always such a bad thing.

I just know that I wanted to scream. Our council DFG team OT is lovely.

But we live in a 1930’s semi-detached house with steep stairs, no landing to speak of and which has been extended by previous occupiers giving a lovely, quirky family home.

With steps everywhere.

We bought this house to raise our family in, so talking about what they want to do the change it is upsetting because it Should Not Be This Way.

Sam is only 3, he’ll be 4 in April. He’s tall too, at just under 1m in height, but like his Dad he’s slender.

We have to lift him everywhere, upstairs to bed, into and out of the bath, into his wheelchair to go into the garden; steps really don’t help the issue.

And as his Dad and I are not getting younger, our backs, arms and muscles are starting to show all the signs of too much lifting, wear and tear.

So, we reached the conclusion that adaptations needed to be discussed.

After talking with the OT we learnt the following:

1. All staircases are not created equal. Ours are too narrow and too steep to safely put a stairlift in place; no landing means the lift wouldn’t be able to turn, plus with Sams seizures he could be injured.

2. A stair climber is also out of the question, see point 1.

3. The only option would be a through floor lift.

4. Our bathroom is too small to adapt so a downstairs bathroom would need to be built

5. We wouldn’t be able to put hoisting tracks anywhere in the house, due to the difficult shape of the rooms The problems in our current house are not unique nor particularly unusual.

A through floor lift would be HUGE and we’d lose half our front room and a bedroom.

The DFG grant wouldn’t cover the cost of an extension AND a lift so it would be one or the other – and even with a lift Sam wouldn’t be able to access the upstairs bathroom.

Which left us with a big decision to make; do we stay and make do, or move house?

After much soul-searching early in 2014 we decided to move. We started to look round for suitable properties – we really wanted a bungalow we could adapt, or land to build our own place.

We put our property on the market in May 2014. It meant that we in effect drop out of the DFG process for the time being, and will need to reapply once we’ve moved.

This will mean around a 6 month wait for another OT to come and assess Sam again. We can live with that, if it means Sam gets a home he can actually live in and access!

Councils will only deal with access into and around a property, so access to gardens isn’t covered (apart from allowing you to get OUT of your house and INTO the garden – if this means you can get onto a patio but no-where else, tough.

However, this morning we’ve had a breakthrough.

Almost a year ago, when we first started looking we found a dormer bungalow, set back off the road with a large garden.

It looked like nothing from the front or from the pictures, but the floor plan showed that we could easily move Sam around it in his chair, and hoisting could be put in at a later date.

We never imagined almost a year on we would still not have sold our house.

However, we did find out that we can rent our existing place out; this would cover the mortgage and allow us to move… and the property we loved was still on the market at a lower asking price.

This morning, we put in an offer and after a bit of haggling agreed on a price.

Fingers crossed everything now progresses swiftly and smoothly!

We will be living downstairs in the new place until we can afford to have adaptations done and we’ve been through the DFG process again… its going to be tight financially but we’re determined that Sam will have a home that is not only accessible to all of us but that does not look like a hospital ward!

We’ve already been researching bathing aids/wet rooms and know we’ll have to cover a lot of the cost, but Sam spent most of his first year in hospital, including his birthday; we’ve all seen enough of the inside of a hospital to know we don’t want to feel like we’re living in one!

As the move/adaptations progress I’ll update with what we’ve learnt etc… fingers crossed please guys x

And then I obsessed about dying again. Cold sweats. Because who would look after Alex when I was gone.

Who – when sometimes the effects of his disability drove me to distraction, made me want to give up, but I didn’t because he was my son, because I loved him to distraction as well – who would do that for him instead of me?

Who would find the compassion needed to understand what he was trying to communicate?

Who would care enough to change him, undress him, bathe him?

Who would take the time to find out what made him happy? Not just now, not just with cute smiley little-boy Alex but later, with grown up man-boy Alex. Probably not so cute.

This is a grieving process I think most parents of children with additional needs go through. In the usual scheme of things all you can hope is that you give your children the life skills, the toolkit, the confidence to get on and make their way in the world.

But with Alex… he’ll always be reliant on the kindness of strangers.

Throughout his life.

Because as his mother, I can only take him so far. I will get old, unable to lift, brain addled and I will no longer be able to fulfil that role.

There was a time that thought had me in floods on the floor. Now it just makes me misty eyed as I type.

This is life. This is how it is. I cannot change it.

Railing against it makes no difference. All I can do is put in controls and hope the world will love him as we do.

So we re-did our wills with a discretionary trust for Alex. And with that came a sense of calm.

They contain a detailed care plan, clear direction as to how we would like Alex to be looked after. We didn’t want anyone trying to second guess us.  We wanted no grey areas.

This is what we want done, this is how we think you should do it.

Please include Emma at all times. But don’t make her do it by herself. Because that is too much for anyone to carry by themselves.

I thought of detailing our care plan, but actually, everyone is different, and everyone will do it a different way.

So I don’t know how helpful it will be.

What I would say is: Don’t put it off.

Get this thing done. I can’t sugar it: after my initial consultation with a very lovely solicitor I cried in my car, as my lovely friends who I texted saying this was so so hard to do and who texted back saying ‘we know, and we’re sorry’ know only too well.

But the relief of This Thing Done is palpable.

If you live in the UK Cerebra do an amazing voucher scheme where they will put £350 towards solicitor’s fees.

Our solicitor capped their fees at the voucher level. Which was lovely. http://w3.cerebra.org.uk/help-and-information/will-and-trust-vouchers/ Mencap have a free guide to the different wills/ trusts you can make.

It’s incredibly helpful: https://www.mencap.org.uk/our-services/wills-and-trusts

After a very rough pregnancy, my youngest daughter was born at 25 weeks gestation.

She spent over six months in the Neonatal Intensive Care Unit (NICU), and it was by far the hardest time of my life.

We didn’t know if she would pull through on many occasions.

After coming home at 6 months old, she was on oxygen, needed regular suctioning and was on a tube-feeding pump.

Up until she turned two, I took her to the Emergency Room every few months for chest infections and she was always admitted.

At four years old now, my ‘little miracle baby’ has many long-term health conditions due to her severe prematurity.

I couldn’t count on my hand the number of times my mom and my friends have said something to the effect of “It’s a good thing that you’re a nurse. I could never care for Brielle.”

These words stir up many emotions for me.

I’m not really sure how to process it.

Yes, I agree that my nursing background and previous learning has prepared me for some of the tasks and care needed to look after my daughter.

But this is my little girl… she is not my patient and this is not my job.

It’s entirely different caring for your own child.

I am thankful that my previous knowledge works to my advantage in caring for B but sometimes I just wish I didn’t have to be “nurse” to my own little one.

Why did she have to be born so early and why does she have so many issues?

Life is just so unfair, it really is.

I feel like my nursing did not prepare me for many things that I have dealt with since having B.

I had never seen a premature baby, never set foot in a NICU or held a teeny baby on a ventilator with all sorts of wires and tubes attached.

Getting her out of the incubator and onto my chest took the assistance and watchful monitoring of three professionals and was highly stressful at first.

No amount of training prepares you for seeing your precious babe hooked up to all sorts of machinery and fighting for their life, countless alarms beeping in the background.

I have many friends who’ve learnt the expert care for their children, with no nursing or medical training.

You just have to.

If you have a child with medically complex or special needs, you pick up the skills you need to best deal with their care and help them thrive.

That is a parent’s role and calling.

We do it out of pure love.

And I believe that you could do it too, if that is what life brings your way.

I know my life is so much fuller and happier because I have Brielle.

I’m not saying it’s been smooth sailing – far from it.

It’s been a rollercoaster ride.

But at the end of the day, to see her little smile and her eyes light up, although she cannot talk, makes everything worthwhile.

There are absolutely no blessing in my daughter, Bethany, having had a brain tumor nor are there any blessings in the disabilities she has acquired from complications during the surgery required to remove it.

Granted, I do believe it’s true that having a child with a life threatening illness has taught my family the things that are most important in life.

I’ll be the first to admit that some good things have happened to us that never would have happened if Bethany had not gotten sick.

Because of Bethany’s illness people who would probably otherwise never have chosen to bless us have become huge blessings in our lives!

Yet even so, to say that my precious daughter’s suffering through months of excruciatingly painful cancer treatments, living with daily debilitating seizures, and enduring the emotional torture of having a difficult to control behavior disorder would be an incredibly unloving and cruel insult to her.

I wouldn’t cure my child even if it were possible

Sadly, I’ve heard many parents say this.

They believe that taking away their child’s disability would be taking away their identity or the essence of who their child really is. If your child is truly happy and not suffering physically or emotionally in any way from their disability, then I certainly have no problem with that!

But my daughter has suffered the unspeakable tortures of brain tumor treatments. She still suffers with physical pain and suffering from having seizures every single day.

She suffers the emotional turmoil of sometimes not being able to keep herself from hurting the very ones she loves the most and she battles with the side effects of several seizure medications bombarding her brain every single day.

If a doctor told me today that they could cure brain tumors and cure Bethany of her seizure and behavior disorder right now, you better darn well believe I’d take them up on their offer in a New York minute.

What kind of a parent would I be if I could relieve my daughter of her pain and suffering but chose not to?

God has never given me more than I can handle.

I am reasonably certain that I’ve been given way more than I can handle many times over already.

I can assure you that standing by while helplessly watching my daughter suffer for fifteen years has been more than I can handle.

Seeing my daughter lying on the couch in a seizure stupor, unable to participate in normal, everyday activities that most people take for granted nearly every single day of her life for years on end has been more than I can handle.

Seeing my daughter disappointed yet one more time because seizures have prevented her from participating in an activity that she has been looking forward to has been more than I can handle.

Worrying about what will happen to my precious, beloved daughter when I am no longer here to care for her is more than I can handle.  I know that I have been given more than I can handle during the many times I have felt utterly alone, helpless, and hopeless and all I wanted to do was crumble to the floor in a crying heap.

My daughter’s disabilities are God’s Will.

God may well have allowed my daughter to get a brain tumor and become disabled for reasons He only knows, but I can’t and will never believe that it is His will that she or anyone else becomes seriously sick, disabled, or suffers in any way.

I may never understand why Bethany has been asked to suffer in such a dreadful manner or why God did not prevent it from happening, but I absolutely must believe that someday I will understand why, that it will all make perfect sense to me, and that it will have been for some grand and noble purpose.

I give up. 

Though it may seem at times that there is no hope of Bethany ever having a life free of seizures and debilitating disabilities,

I will never give up hope or searching for that one elusive medication, treatment, or therapy that just might set her free her from all her pain and suffering.

Sam, like many, many others, does not have a definitive diagnosis that explains why he has the range of issues he has.

It also means we have no prognosis to allow us a glimpse of what the future may hold, or to guide us as to the best therapies to bring him on developmentally.

We are, to put it plainly, in the dark.

When Sam was first admitted to hospital with seizures, the neurologist was very careful with his words as he gave us the results of the MRI scan… although there were changes, it was unclear what those changes meant for our baby. 

As he gently explained, we don’t perform MRI scans on healthy infants, so it would be a waiting game to see what those changes might mean or if they were just part of normal development. 

Sam was, after all, an early baby.

He had stopped growing suddenly at 35 weeks into the pregnancy and arrived by emergency induction of labour shortly after. 

He was ready to come, the induction went smoothly and I didn’t need any additional hormone therapy to get things moving! 

Seeing some developmental delays is normal in early/premature babies, and more often than not they make up that developmental ground as they grow older until there is no difference between them and their peers born at full term. 

Prior to Sam’s first seizure, there had been signs that all was not well; his development was indeed delayed and he struggled to gain head control, his visual tracking abilities seemed to be regressing rather than improving.

After several weeks of feeling increasingly uneasy, I had finally managed to get our health visitor to take my concerns seriously and she was due to check him over a couple of days later…

Sam had other ideas, and threw that first seizure before she had a chance! The first weeks after that seizure were terrifying.

Sam had experienced a life-threatening complication of epilepsy termed status epilepticus while at the hospital.

In effect, the seizures were not stopping and unless they were stopped medically his heart would start to struggle to put him at risk of a cardiac arrest.

He was all of 14 weeks old.

But we knew about epilepsy – we just needed the right meds, ok?

Over the weeks that followed it became apparent that seizures were just one of Sam’s problems.

His head control was cause for concern, the changes to his vision were seizure-related but that didn’t explain why he had such low muscle tone and was floppy as a newborn.

He made a really disconcerting noise when breathing, as his airways were floppy too.

He was, however, growing well and gaining weight which ruled out a lot of conditions fairly quickly.

Before he was even 6 months old, Sammy had experienced multiple blood tests, lumbar punctures and all sorts of other procedures to try and find out what was wrong.

All the tests came back negative – as far as anyone could tell our boy was absolutely fine, although it was very, very obvious that this was far from the case.

As he has grown older, more issues have become apparent – Sam has a dangerously unsafe swallow and aspirates fluid and food into his lungs instead of swallowing them fully into his stomach.

As a result, he is now 100% tube fed.

This, however, has uncovered some new issues – Sam seems to hold food in his stomach far longer than usual, and his gastro team is currently looking into whether he has true delayed gastric emptying (gastroparesis).

His reflux has become more evident now he’s on a liquid formula diet instead of solid food, and this is playing havoc with seizure control.

It took us 2 more years before we had any answers at all to explain Sam’s disabilities… it was a second MRI and a very determined medic looking at the scan very, very carefully that identified the areas of abnormal neuronal migration that gave Sam a diagnosis of polymicrogyria.

PMG, however, is a description of the condition rather than a diagnosis as such, we will in all probability never know why our little boy’s brain didn’t form correctly; multiple causes have been identified including genetic, infection, etc.

Sam’s neurologist is certain that there is a genetic cause for Sam’s PMG as it isn’t diffuse but has occurred in specific regions of his brain.

However, finding the answer would be like looking for a needle in a haystack, and after much discussion, we have decided not to put Sam through any more invasive tests unless they are absolutely necessary.

We have decided not to pursue a diagnosis at all costs. Instead, we are starting to accept the hand that fate has dealt us, and are loving the child we have been blessed with.

So, what does it feel like to have a child with an undiagnosed condition? It is far more difficult to get answers from professionals – many symptoms our children experience are generic and may or may not be related to their condition.

Many symptoms appear to be totally unrelated, such as slow growth and sensory processing issues.

Many of our children have problems affecting more than one body system – in Sam’s case he suffers neurological and gastro issues.

In many cases the Doctors are as much in the dark as we are, and that is a very difficult situation to be in… we *need* the Doctors to know what to do and to have a clear plan of how to treat our children, but when they themselves struggle to make sense of the puzzle it feels very isolating and very, very frightening.  How can we make the right choices as to treatment when the people who know most about the therapies etc., are unable to advise us?

When a child has a recognised disability, getting help from local authorities, charities and other support agencies are significantly easier than if you have to say that your child has no confirmed diagnosis.

It is also the most frustrating experience I have ever known.

In Sam’s case, his physical issues hide his true potential – being undiagnosed makes it too easy for the powers that be to say he is less capable than he is, and it makes it a very difficult battle to fight.

But with all the negatives come quite a few positives.

We have no prognosis to read up on, or to scare the wits out of us!  We have to live day to day, just like any parent would.

There are no limits placed on Sam as to what he will or won’t be able to do, we just have to work with him a do our best for him.

If a therapy doesn’t help him, we ditch it. If one does, despite the professionals saying it wouldn’t, we continue.

In the past 4 years, we have learned what we are capable of, and it’s far more than we imagined… we’ve discovered how strong we can be, too.

Sam shows us what it is to love unconditionally, and we, in turn, adore our little hero.

Due to the strong likelihood of a genetic link, and given issues I had during the pregnancy, we have made the decision not to have any more biological children; we just couldn’t put another child through what Sammy has fought through.

Does that mean he’s any less of a joy to have in our lives? Of course not. Undiagnosed he may be, but his story is only just beginning x

So, I suppose it is only fitting that when Miss Z was born, she was missing her label.

When she was first born, we assumed that her missing label read “healthy neurotypical infant girl”.

OK, that’s a lie. When Miss Z was born, we knew nothing about special needs, so wouldn’t have had a clue what “neurotypical” meant.

We would have just called her “normal”.

But it turns out that whatever was written on that missing label, that wasn’t it.

At the age of 6 months, she was given a new label: “epileptic”.

That was swiftly followed by one of my least favourite labels: “global developmental delay”.

But neither of those quite got to the heart of what should be on her label.

They were like the washing instructions, not the front-of-the-box, big letters, this-is-what-it-is label.

A pediatrician briefly put a “cerebral palsy” label on her, but it didn’t stick.

Occasionally a medical professional tries to stick it back on, but that label lost its adhesive long ago.

At around a year old, she was given a new label: Rett Syndrome. I did my research and was sure this one was it.

She ticked nearly all the boxes – her paediatrician and geneticist were sure that was her missing label. Except the genetic tests said it wasn’t. So, that label was peeled off.

In the meantime we were furiously accumulating symptom labels: cortical visual impairment, apraxia, microcephaly, hypotonia, dysphagia, complex motor stereotypy, scoliosis and osteopenia – to name but a few.

We generally had no clue, at least initially, what these labels meant.

It was like the list of ingredients on the label of instant noodles – lots of long, complicated words that have no meaning to you, but you know instinctively that they’re not good.

We kept searching for Miss Z’s front-of-the-box label. T

he geneticist gave her a “CDKL5” label and it stuck for about six months until the genetic test came back, telling us that it wasn’t our missing label either.

Another label was peeled off and thrown away. After over a year of fruitless searching, our paediatrician suggested that we make our own label: “atypical Rett Syndrome”.

He reasoned that Miss Z fit a clinical diagnosis of Rett Syndrome and the “atypical” could cover the fact that she didn’t actually test positive for it.

So, we printed our own label and it has been stuck on her ever since.

The only problem is that we don’t really know if our label is right. E

very medical professional has his or her own opinion, ranging from “she is absolutely a Rett girl” to “she isn’t remotely Rett-like”.

Miss Z is like a tin can with no label that you find at the back of the cupboard – you think it is probably green beans, but you just don’t know for sure.

And we may never have a clear answer.

Being undiagnosed – unlabelled – is hard, although it is harder for me than for Miss Z.

I worry constantly about her future, as we have no idea what her prognosis will be.

I wonder if there is a treatment or therapy out there for her specific condition that might help – and that we aren’t getting because Miss Z is undiagnosed.

I feel like we are guilty of not doing enough to find out her diagnosis.

Surely there is another test?

A research study?

Something?

Whereas, Miss Z just carries on being her own unique, hilariously grumpy person who loves listening to Beyonce in the bath and being held while she sleeps, fakes exhaustion whenever a therapist enters the room, and can give the deadliest dirty looks on the planet.

No label is ever going to capture even a fraction of whom she is.

But that doesn’t mean we won’t stop hoping that someday the right label finally sticks.