They didn’t play together of course, even though my daughter is the same age as her son, he rushed around with his toy cars whilst she lay on her back, legs in the air happily chewing one.

I have to admit I didn’t react to the comment externally as I was inside.

I managed to stifle my scream if only to not frighten the children, but in that moment what had seemed like a fairly ‘normal’ and equal friendship, changed.

Brave.

To me brave is something you call service personnel who go off to war, or hunky firemen and women (although in my dreams it’s only firemen!) who save lives at the risk of their own.

Brave people dive into rivers to save drowning dogs, wade into the middle of pub fights to end them and generally do things of heroic proportions.

Or they jump off of burning buildings wearing pants over their tights and a cape. Mel Gibson in Braveheart was, well, brave – you get my point.

What did she see about my being a mum to my daughter that was brave?

Was I being put on a pedestal? Then embarrassment gave way to horror, was I being pitied?

Was parenting of a child with complex needs being compared to something horrible that one endured like an incurable disease?

Or was I indeed the brave soldier doing battle in an endless war?

Lucy had given up chewing the plastic car by this point and was thinking about mouthing something more nutritious so I made our excuses and left.

I never did find the courage (not brave enough) to ask her exactly what she meant, or why she felt she needed to tell me.

Although we met up a few times following that, things were never the same again.

Partly due to my dented pride and partly the ever growing developmental gap between our kids which drove a wedge between us and made ‘play dates’ empty and a bit pointless.

Fast forward a few years and I feel stronger and more mature now, more able to challenge the throw away comments like that which can sting.

I also realise I’m quick to assume that the person has meant something by it when perhaps they haven’t.

People do need to be given the benefit of the doubt and a break now and again.

I’m not sure I agree with her use of the word brave.

To me, brave still suggests someone’s put themselves at risk knowing the consequences.

We are not like that, even those who do know that their child will be born with disabilities can’t possibly know how hard the road ahead will be.

Perhaps brave is the way in which we face that road, but again it suggests to me a, ‘stiff upper lip’, and get on with it attitude which is a high bar to set ourselves for those days that we just don’t feel strong enough to be brave.

It’s a word I would like to aspire to, but would never burden any special needs parent with – and especially not their child.

“Oh you are so lucky, my son loves, “Nee-Naws”, he’d LOVE to go in an ambulance with the blue lights on!!”

There were others of a similar ignorant vain.

I’m afraid, dear reader, I let rip.

Full throttle.

How utterly idiotic to think that a child so seriously ill to require blue lights on a trip to hospital is going to be thrilled by them?

WHY are people so self obsessed these days that they can only think about what their charming little darling would like?

How out of touch does a parent of a healthy child have to be to not be able to imagine themselves in that situation?

Ambulances are not comfortable, ‘fun’, places to be.

They are hard, uncomfortable bumpy rides and you usually have to sit with your back to the direction of travel – a quick route to travel sickness.

The sirens are loud in an echo like way – ominous even and when things really have gotten bad, the medical staff are so engrossed in their jobs that it is silent – save for the sounds of the equipment being used.

They are work horses designed for a serious job, not rides at an amusement park.

Making a 999 call for your ill child is surreal.

Panic gives way to a calm resolution that you need help, quickly and their care is now beyond your capabilities.

Making the call for the third, fourth or more time doesn’t make it any easier.

Each time you are willing for the person on the other end of the phone to tell you you’ve got it wrong, or the ambulance staff to do something simple to fix things at home.

I’ve also felt all sorts of strange emotions after making the call.

Embarrassment that the sirens and lights will wake my neighbours in the middle of the night.

Apologetic to the ambulance staff for calling them out and I’ve even cracked jokes with them to try and lighten the mood.

Shock and fear it would appear have the same effect on me as alcohol.

Driving behind an ambulance that is taking your child to hospital is also odd.

Your heart and soul travel in the vehicle in front of you, your hopes and fears stay at home.

I used to think, ‘nee-naws’, were exciting too, now, I flinch every time I see an ambulance travelling with its blue lights on and feel thankful that we are not the ones needing it this time.

When she eventually joined us, her left leg was raised over her head like a yogic master which looked odd to say the very least!

Initially, we were told that everything was fine, however, at her six week check up, Lucy’s left hip was found to be out of position and a diagnosis of hip dysplasia was given.

She was put into a restrictive harness (Pavlik Harness) which held her legs at 90 degrees to her hips and her legs in a frog like position.

She had to wear this 24 hours a day for 6 weeks.

No baths, no tummy time, no ordinary clothes… yes, I did just say no ordinary clothes!

Because of the odd shape the harness kept her in, ‘normal’, clothes did not fit.

We had to cut all her new rompers up the sides and even loose fitting dresses revealed the obvious straps of the harness.

After 6 weeks and an all clear, the harness came off, sadly at the 6 months check up however, the hip was back out again and an operation was now required.

Following three hours of surgery, Lucy was wrapped up in a solid hip spica cast from her chest to her ankles.

Her legs were now at a 45 degree angle and she weighed half a stone heavier due to the cast.

A small gap had been left for the nappy which we were told must be changed regularly to avoid getting the cast wet.

We stayed in the hospital with her, caught the norovirus, and well you can imagine what the first 48 hours back at home were like!

Learning how to care for a child in cast whilst being violently ill yourself, is a baptism of fire.

Learning how to cope with rude comments and strangers staring at your child in cast when out and about, well, that’s a whole different kind of level.

To avoid this and also keep the cast dry during winter, I designed and made a pair of waterproof trousers to cover it.

These worked a treat and I made more in different fabrics and actually enjoyed dressing Lucy again.

The NHS staff treating her hips really loved the trousers and said how useful they’d be to other parents.

Lucy’s hip dysplasia diagnosis, at six weeks old, had come at the same time as the much more serious diagnosis of a very rare genetic abnormality.

As well as facing an unknown but probably bleak future, we were on the treatment treadmill of a fixable condition.

As odd as it may sound, this was some comfort as it was something that could be cured on a big long list of medical issues that might not be.

The operation also sparked me to request a cardiac scan, revealing a hole in her heart that needed surgery but probably would not have been detected otherwise, so in an odd way her hips saved her life.

By the time she was in cast, I realised I was not going back to work and would become Lucy’s carer.

I didn’t accept this idea easily, so decided to turn my designs of clothes for children being treated for hip dysplasia into a business.

I didn’t at that point know the first thing about running a business, but it’s amazing what the need for a distraction can motivate you to do.

I found a business mentor, designed a range of clothes and trialled them with parents and their babies, found a UK manufacturer, won a start up grant, designed a website and started selling online a year after Lucy was in cast.

I worked all the hours available, when she was in special nursery, when she slept (not often!) and during the evening.

Working that hard helped me push through the pain of having a profoundly disabled child, it saved my sanity and helping others really boosted my confidence.

I also couldn’t have done it without the enduring support of my husband and Mum (who came up with the name Hip-Pose).

They saw that I needed to create something of my own and gave me the space do it.

Now nearly four years on and I sell to families around the world and even to the same hospital who treated Lucy as they give newly diagnosed babies a Hip-Pose sleepsuit.

My designs won Gold for innovation in the Prima Baby Awards 2015 and I have written a chapter on clothing for a book on Hip-dysplasia that is being published later this year.

I’m also a parent advocate for the International Hip Dysplasia Institute.

I love getting messages from customers telling me how the clothes I designed helped them through a traumatic time and am so happy that from out of the darkness came something positive and helpful to others.

To any other Special Needs parent who ever wondered, “Can I start my own business?” I’d say have a go.

I’ve met some of the most resourceful, creative and strong people I know on this journey and they are all parents of special needs children.

I know lots of people and am friendly to them but, to me, friendship – true friendship – takes time and effort.

I’m in short supply of both of these things.

The ones that are my true friends I am dedicated to and with them it doesn’t feel like an effort anyway.

These friends have always stayed and even when we had not met up for years, when we did it felt as if no time had passed at all.

Some of this changed however when I had my daughter, who just happened to be born with an incredibly rare genetic abnormality and as a result is profoundly disabled.

People who had been long-standing friends suddenly were not.

One or two simply disappeared, and in my disbelief, I kept chasing them!

Some came clean and said they didn’t know how to be a friend anymore and others just acted so crassly that I decided to avoid them.

I do understand that, sometimes, in a crisis, people don’t know what to say, but I honestly didn’t feel that I had changed so, why had our friendships?

New, “friends”, emerged from my going to baby groups etc, but as their babies developed and mine didn’t the gaps in our friendships grew bigger.

In an argument with one (via text!) it emerged that she had only been friends because she felt sorry for me.

Another revealed her true colours when showed up in public.

We were in a swimming pool at the time and I was inwardly drowning at the sadness of it all.

I let it go thinking perhaps I’d over reacted but when she backed out of coming to my daughter’s birthday party and suggested I, “Cancel it and save the money if not enough people were going”, I couldn’t deny it any longer.

Then, a truly transforming thing happened.

My daughter started at a special needs school.

I joined the PTA in order to meet other people and become involved in the school life and almost overnight met the most amazing group of human beings I’d ever encountered.

It was fast-paced, no nonsense friendship-making on a speed dating level.

Within months, I knew quadruple the number of special needs parents I had known before and made some incredibly insightful friendships.

For the first time in my life, I am in a big group of friends.

We support each other, listen to each other, challenge each other and sometimes slightly tease each other.

But most of all, I know that everyone of these amazing women understands me, have felt what I feel, relate to my hopes and fears and are not afraid to say anything.

They are all simply real, not an ounce of fake or pretence.

I love them for it and I feel like I have been friends with them my whole life.

Without them, things would be much harder.

And although I would not have wished our lives on anyone of us, we are who we are because of our situations and having children with special needs.

For me, this is an important point to building new friendships with people who have not experienced this unique world as now, I don’t expect them to understand what it’s like.

I no longer need them to.

At the other end of the long corridor facing us stands a little blonde girl about two years old wearing a white shift dress.

We stare at each other in silence for ages, both mesmerized by the other until she laughs and runs bare footed into one of the rooms nearby.

The spell is broken instantly and in rushes a flood of tears that literally shakes my Mum off her feet.

Tears of anger, horror, fear, hatred even that life has brought us to be standing here at this moment.

A tidal wave of pent up frustration which, up until now, has been managed admirably well for five years but is let loose by the innocent charm of this beautiful little stranger.

Half an hour before, we had all been crying tears of a different sort, ones of joy.

We had taken my daughter to the Hydrotherapy pool next door and for the first time in three years, my Mum had been able to hold her granddaughter helped with the buoyancy of the bath warm water.

They had laughed manically, twirled and splashed and squealed with delight.

The 65 years age gap vanished as both overcame their physical limitations and became equal in the water.

It was a truly magical experience that I will always remember and which without doubt cemented their bond with each other forever.

Back here in the corridor however, the reality has hit home that to access this wonderful facility, we have had to join a club that neither of us dreamt of.

On either side of the corridor are bedrooms each beautifully decorated with cheerful characters, butterflies and castles.

Each shares a large en-suite bathroom and has a view outside onto a peaceful garden.

Each is equipped with state of the art monitoring equipment, special beds, oxygen on tap and emergency alarm call systems.

The larger room on the left is an office where excellent nurses work and part of their role is to look after terminally ill children staying here.

We are stood in a children’s hospice.

We have accessed this special place because my daughter has a life threatening form of epilepsy.

We also need respite now and again and are able to get it here, safe in the knowledge that she is in the best possible care.

When we first visited I felt like a fraud, thankful that my girl was not terminally ill and slightly guilty to be accessing the services.

A year on however and I have learned that as well as this hugely important role, the hospice also offers a fun safe place to play, make new friends and get a break in the company of other special needs families.

Our three generation party of girls still go swimming here and we have now been to parties too, celebrating being members of this special club that we once knew nothing about.

Lucy has profound disabilities both physical and learning, the house is swamped with her equipment, and it has no downstairs loo.

As she is showing promise in the toilet training department, a downstairs loo, as unglamorous as it sounds, is top of our housing priorities.  Bungalows would be the sensible option, but largish ones are sadly lacking in our town & budget so a house it has to be.

Two years ago, the Occupational Therapist from Social Services visited us and bluntly declared that our house was too small to adapt, she suggested instead that we put our names on the Council housing list.  Being home owners for more than 10 years that came as a shock and we resolutely set about proving her wrong.

Applying to charities for a stair lift and bath lift, we muddled through, but our needs as a family have now outgrown those efforts. Looking for a new house is supposed to be fun, but we have to exclude so many as even if they do have the holy grail of downstairs loos (big enough for disabled person and carer) the house also needs so many other elements.

Level access, ideally off road parking near to the house, no steps to the garden, a floor plan that allows for a lift, a ‘flow’ around rooms for a walker to manoeuvre and a bathroom that can keep a bath lift in it and a separate shower.  If that bathroom is near to a bedroom big enough for Lucy’s special high low bed then all the better, as tracking will probably move in with us at some point too. If I thought the house searching part was disheartening it has nothing on the house selling part and dealing with viewers.

Yesterday in the space of three minutes the woman walking around my home asked, “Who uses this?” pointing to the stair lift, “What’s this?” pointing to the high low bed and eventually the inevitable “What’s wrong with your daughter?” none of which were her business but in what felt like a hostage situation I garbled answers.

A home is also more than just bricks and mortar, it is a sanctuary and vault of memories both good and bad.

Our current home has welcomed an army of therapists, social workers, and carers.

It has repeatedly allowed in ambulance staff in the middle of the night to whisk us off to hospital, stood sentry over us and buffered our overspill of emotions when needed.

It also welcomed our tiny baby when she finally came home from the special care baby unit.

It has provided a safe haven to our family and been a port in every storm we weathered.

It has hosted family celebrations, delighted in being dressed up for birthdays and Christmases and evolved with our taste in decorating.

Those memories are hard to leave behind and we will miss this home, for all of those reasons, but it is time to hand it over to someone else to love it and it to nurture them too.

As for us, the search continues for our next sanctuary and place to grow in as a family, I know it is out there somewhere just waiting to be found.

If I’d been able to learn from that then maybe I wouldn’t have become such a drama queen about them myself!

To say I had a ‘thing’ for a set of baby wheels is really like saying Imelda Marcos liked shoes – you see I was ever so slightly addicted!  I gave up counting around the twenty mark…

For the first few, I reasoned with myself (and my husband!) that our daughter’s needs were not being met by the previous ones.

Lucy was diagnosed with hip dysplasia at 6 weeks old and put into a restrictive harness keeping her knees bent and hips flexed in what’s endearingly called a ‘frog like position’!

The reality is ‘normal’ clothes didn’t fit and nor did her new profile in the lovely pram I’d bought for her.

Then a year on and the hips still not in the correct position, we moved onto major surgery and the addition of a hip-spica cast, which kept the legs splayed out solid from chest to ankle – much more like a spatchcock chicken.

However I was now aware that part of the new pram purchases were also driven by my need to ‘compensate’ myself for having a baby with disabilities.

I went all out and bought the lovely Quinny Buzz I’d drooled over when pregnant but couldn’t justify in price.

And I got it in bubblegum pink, to coordinate with her purple cast, you see not just practical?!

The shape did allow for her unusual position, helped with a cushion, but like many of the brands at that time, the seat was always a bit reclined.

By the time she was two years old and her low tone was more of an issue, the permanent recline became a constant frustration for her.

I embarked a long journey of pushchair discovery and at the peak of my little habit, I was literally spending all evening every evening trawling the internet and researching my fix.

The ‘buzz’ came in the hunt for the perfect set of wheels, with just the right seat positioning, fold mechanism, colour/pattern fabric and matching accessories.

The hit lasted shorter and shorter amounts of time with each purchase until the ‘down’ came with opening the box on delivery.

I was no longer even getting satisfaction from the deal as it became a reminder of what I was denying.

Luckily I had bought popular brands that held their value well and I always managed to sell them quickly (once within 48 hours of my getting it!) and even made money on some of them.

But eventually I reached a point where I had to admit that shop bought, mainstream whatever you want to call them, pushchairs really were not what my beautiful disabled daughter needed.

By the time she was four, she was also starting to outgrow the size and weight limit of ‘normal’ pushchairs and we started to get ‘those looks’ from other parents assuming that a child of her age should be able to walk.

Quite simply coming to terms with her disability, came at around the same time as coming to terms with her need for equipment designed with her special needs in mind.

It was a stepping out of one world and acknowledging ours and embracing it.

I still squirm now and again with the frustration that her special needs umbrella fold stroller doesn’t recline, which she needs for naps.

I also dream of designing the perfect compact special needs pushchair, because lord knows I’ve got enough experience of them now, but I’m relieved I’ve kicked the habit and can now see them for what they are, a mode of transport and piece of essential equipment, not a status symbol.