Every parent ever, will tell you though that as the child gets heavier, the combined weight of the infant carrier and their baby’s weight leaves your arms aching. Eventually it becomes easier to just carry the child from the car instead.

In the UK, when Hugh was little this first size car seat, which was rear facing took babies from birth to around 9 months or until they weighed 10kg, they then often moved to a forward facing car seat.* (Guidelines have recently.)

At 9 months however, Hugh was as floppy as a newborn still.

He was lost in the car seat that had served his older brother so well.

As time went on, he grew bigger and heavier but was still unable to reliably hold his own head up – a standard car seat no longer seemed appropriate. To further complicate matters he regularly stopped breathing, so travelling with him in the back of the car was unsafe.

What I needed was a rear facing car seat that I could place in the front passenger seat that offered the same level of support that a newborn needed whilst being a suitable size for a toddler.

So how do you go about finding one of those?

Luckily I discovered the Regional Driving Assessment Centre. They hold ‘Child Car Seat Clinics’ where you can go and be assessed for a suitable car seat.

I was able to self refer (although you can get a professional to do this for you) and for a nominal fee of just £10 was booked into the next available clinic.

The assessment involved detailing Hugh’s physical needs as well as what I wanted from a car seat.

Sometimes they will ask for information from your child’s physiotherapist or occupational therapist too. Then reps from a couple of different companies showcased a variety of car seats that would meet our needs.

Hugh was able to try all of the seats and we were even able to try them in my own car.

The Occupational Therapist from the centre checked Hugh’s positioning and took photographs of him in the seats.

There were two car seats I liked and each of the reps prepared a written quote for my chosen seats and the Occupational Therapist provided me with a list of charities that may consider funding, or part funding, the car seat.

A week or so later a very detailed written report from the Occupational Therapist arrived.

It contained photos of Hugh in the chosen car seats and gave lots of information about Hugh’s needs and how the car seat met them.

This letter, along with the written quotes made applying to a charity much easier.

There are a number of assessment centres around the country with the aim of helping older and disabled people achieve a better quality of life by helping them gain more independence through mobility either as a driver or a passenger.

One of the ways they do this is through the Child Car Seat and Harness clinics but they offer other forms of assessment too.

You can find out about the Regional Driving Assessment Service here: http://www.rdac.co.uk/

You can find out more about the law in the UK regarding car seats here: http://www.childcarseats.org.uk/

*Guidelines in the UK have recently changed. Group 0 Rear Facing Car Seats should be used until the child is 15 months or 13kgs.

Preparation is key, and whilst I don’t have a bag continuously packed and waiting at the front door like I did in the bad old days when emergencies occurred at least once a week, things like a travel size toiletry bag and up to date prescription information can be prepared and ready to grab at a moment’s notice.

1. Medical notes including up to date prescription information.

You don’t need the whole back story – no one needs birth details (unless it’s relevant) and the like. Simply photocopy a recent hospital letter or make your own bullet pointed list on a sheet of A4.

Both the ambulance crew and admission team at the hospital will want this information from you.

It’s much easier to hand them a pre-prepared sheet of paper than to have to spell out complicated medical terms and remember drug doses in millilitres AND milligrams.

2. Medication

We regularly encounter problems getting hold of some of Hugh’s drugs.

It is much easier to bring our own than to wait for the on-call pharmacist at 2am.

His daily medicines are all kept together in a box anyway so it’s easy to grab and go.

3. Clothes for them

It’s usually really warm in hospital so bear that in mind.

Pyjamas- lots of pyjamas – to cope with the various bodily fluids they’ll be covered in.

Other loose fitting clothes like light jogging bottoms and T-shirts are ideal too.

4. Clothes for you

I find it best to have my stuff in a separate bag if I can. Whilst I have often seen very glam parents in heels and dresses by their child’s bedside, for me comfort is key.

If I’m going to be living on a camp bed on the floor by Hugh’s hospital bed for the best part of a week or more then I’m more interested in feeling comfortable than looking good. (In fairness that’s my day-to-day approach anyway: more slummy mummy than yummy mummy, that’s for sure!)

During the day leggings and loose tops are great, I always bring slippers too.  And for night-time I have a couple of pairs of pyjamas that could pass (at a distance) as joggers and these are way less embarrassing to be caught in than a dodgy floral nightie!

When your child stops breathing at 4am and their bed is surrounded by a team of doctors you really don’t want to be trying to cover up.

With that in mind a night top with a bit of support is a good idea, saves that awkward crossed-arm pose to keep everything where it should be. You know what I mean ladies, don’t you? Don’t you???

5. Toiletries for them

Nappies and wipes, any creams or lotions, toothbrush and toothpaste.

Hugh has eczema and this can flare up with the hospital sheets so I always have his creams packed.

A good lip balm or Vaseline is good too as the warm hospitals can be really drying.

6. Toiletries for you

Face wipes (I just use Hugh’s baby wipes), tooth brush, tooth paste, shampoo, conditioner, shower gel.

I have mine all packed in handy travel size containers so they’re always ready and just top them up again after each hospital admission.

A towel- some hospitals let you use theirs, others don’t. And maybe you wouldn’t want to use theirs anyway. Bring your own if you can.

7. Food

Hugh’s tube fed so this includes remembering feeding tubes too.

Most hospitals can provide the equipment you need but it’s best to have 1-2 feeds available if you can as these things aren’t always easily accessible in a&e.

For yourself grab what you can to take with you and remember a bottle of water, it might be a long time before you get a chance to get food or a drink.

8. Something to keep you both occupied

A book, an iPad, a few favourite toys- whatever you can to make those long hours pass by.

9. Your phone and a charger

To keep friends and family updated and, if you’re like me, to while away the hours on various social media platforms!

10. Money

For food, the morning papers, and a cup of whatever passes for coffee from the machine in the waiting room.

So there you have it. The top 10 things I think you need to bring to hospital.

What about you?

Have you any items that you always bring?

Or like me, have you had a clothing disaster or been caught out, leaving something vitally important behind?

Tim explains; “I run because I can. When I get tired, I remember those who can’t run, what they would give to have this simple gift I take for granted, and I run harder for them.” (source: http://www.whoirun4.com/about-ir4/)

I registered Hugh, my 4 year old son who has severe developmental delay, and he was quickly paired with a runner from America.

Runners and their ‘buddies’ are encouraged to post regularly ion the Facebook group with photos, details of their run or workout, news and messages of support.

The page is a hive of daily activity with buddies and runners from all over the world sharing stores, building relationships and making connections.

Some runners compete in races wearing t-shirts emblazoned with the name of their buddy then send the medals on to them.

Some runners and buddies have met, others run in virtual races and clock up the miles to cover the distance between them.

Some runners post photos of their workouts all with the message – ‘I’m doing this for you’; the person they’re running for spurring them on to train harder or run faster.

The buddies send regular updates – what they’re doing at school for example – and some post cards and letters or pictures to their runners.

They also have two secondary organisations, building on the foundations of the original idea:

Kerri on: I run for remembrance: where athletes are paired with families who’ve lost members due to special needs conditions, sudden death or other tragedies

I run 4 siblings: the unsung heroes: which pairs athletes with the brothers and sisters of children with special needs.

Hugh being matched with a runner was fabulous, but he is profoundly disabled and has no awareness of it.

I have enjoyed making connections with his runner though and sharing stories about Hugh with her and she has offered encouragement and support, particularly when Hugh has been in hospital or unwell.

For our family it is The I Run 4 Siblings group which has had the most positive impact.

Siblings of children with special needs are often the forgotten heroes in the drama.

Sean, at just 6 years old, has witnessed and experienced things no child ever should.

He has watched me resuscitate Hugh countless times, he’s witnessed his baby brother being whisked away in an ambulance with blue lights and sirens, and he’s seen him hooked up to all kinds of monitors and machines in hospital.

From a very young age he knew how to ring for an ambulance and he’s already adept at tube feeding.

Even with the best of intentions our lives revolve a little (and sometimes a lot) around Hugh. If Hugh’s ill we can’t leave the house – friends and family take Sean to school for me.

If Hugh’s in hospital (which is often), Sean is palmed off on whoever can help, since I need to stay in the hospital and their dad needs to work – unfortunately those bills still need paying!

We do our very best to make Sean feel important and special but he knows, and accepts with his adult-like empathy, that often Hugh’s needs are our priority.

And that makes me very sad.

So when Sean got paired with a runner I was delighted to share it with him. This was something just for him.

He has been really involved with messaging Sarah, his runner, and is excited to hear from her.

The teacher in me couldn’t resist using it to teach him about the world – so we looked at where Sarah is from in America and where she has been deployed to with the army and found them on the globe.

We found out the time zones in both those places and at various times of the day we’d check to see if Sarah or her family at home would be awake or asleep.

Sean’s really impressed she’s in the army and has asked lots of questions about war in the Middle East.

He eagerly scours the photos she posts for any tanks or guns and even asked if she might be able to send him a real one!

In return, Sean likes to tell Sarah about football (or rather soccer as she calls it).

He’s shared his love of Aston Villa with her and about the matches he’s played with his local team.

And when he received an engraved medal at his football-themed birthday party earlier this year – he asked me to post one out to Sarah. Last week Sean was off school with a bug.

He sat curled up on the sofa watching films.

Then up popped this: All the way from an army base in Kuwait came a get well message. #And what followed were messages to ‘feel better soon’ and ‘get well’ from runners and buddies alike all over the world! Sean was absolutely delighted.

If you would like to find out more about I Run 4, their website is here: http://www.whoirun4.com/

OK, we’d take a significant number of those stresses and strains with us (and I don’t just mean the husband!) but the mundane day to day reality could be left behind.

We agreed with our nurse that it was important for Sean, Hugh’s older brother, to have the normality of a family holiday and that it would be good for us as a family to just get away from it all.

How though, how do you travel anywhere with a medically fragile child?

Well you plan. And you plan. And then you plan some more.

We explored every outcome, every possibility, every potential emergency and how it could be dealt with. We’d go somewhere by the sea so it felt like a ‘real’ holiday but not so far from home that we couldn’t get back quickly should we need to.

We’d find somewhere with decent local hospitals and good emergency departments. I took to the internet and searched for hospitals in various locations.

I asked in Facebook forums about the children’s wards. And we chose a holiday destination equidistant from two major hospitals with good emergency facilities.

We printed letters from Hugh’s paediatrician, detailing his condition.

We had an extremely comprehensive seizure management plan drawn up. Hugh’s community nurse wrote three A4 pages containing everything you could ever possibly need to know about Hugh – from the different medications, strengths and doses he was on, to his known allergies; previous treatments and operations, to how he presented with different illnesses and suggested responses.

We printed contact details for the majority of his medical team and filed it all in an envelope marked ‘In Case of Emergency’.

We contacted the holiday park to declare that we’d have oxygen with us and asked about insurance for that.

We discussed with them how an ambulance would find our specific caravan, the average wait for an ambulance and the transfer time to hospital.

We asked about the medical training of the staff on site.

We’d be travelling by car, so we would be able to bring all the medical equipment we’d need with us, however I contacted the oxygen supplier and the enteral feed supplier to discuss options should we run low and need additional supplies.

The lists of what we needed to bring were endless – we checked and triple checked them: sats monitor, sats probes, travel oxygen, nasal cannulas, oxygen mask, bag and mask, suction machine, nebuliser, feeding pump … and spares of everything.

We packed boxes and boxes and boxes of feeds and medication and syringes.

Hugh’s wheelchair took up an inordinate amount of room in the car, squished in alongside that was the P-Pod – a wonderful specialist moulded beanbag so that Hugh had somewhere to sit in the caravan.

With all the medical and feeding equipment wedged in too, there was barely enough room for clothes.

The accommodation didn’t need to be accessible, since Hugh was only two and a half.

We could still easily lift him in and out of most places. Beds weren’t so much of an issue either, with carefully placed pillows he could be kept safe in a single bed.

These however are issues that will certainly affect future holiday choices.

Carefully and meticulously we planned every last detail of that first holiday and still our nerves were stretched. We’d been to Ireland with him in the past but since he’d become seriously ill we’d rarely travelled any distance at all.

What if he stopped breathing while we were on the motorway? What if he got sick while we were on the beach? What if? What if? What if? …

There was only so much we could control, for everything else we tried to plan in advance what we’d do.

It was nerve-wracking and mentally exhausting.

Organising that holiday wasn’t easy but I’m so glad we did. The benefits for Sean, for our whole family, far outweighed the difficulties.

The holiday itself was amazing and worth every minute of planning. The sun shone every single day and there was rarely a cloud in the sky.

We built sandcastles on the beach and chilled out in the sun. We had coastal walks together and splashed in the sea. Sean danced and danced to the evening entertainment.

The boys shared a bedroom for the first time.

We had fun. We laughed. We made memories.

There’s just 14 months between Hugh and his older brother Sean and early on the differences between the two as newborns was stark.

I kept my fears to myself at first, but after weeks of silently worrying I began to voice them out loud.

It was the little things that worried me, he wouldn’t wake for feeds, he wasn’t interested in the world around him, he didn’t make eye contact, but the GP seemed less concerned and friends and family were quick to reassure me, pointing out that babies developed at different rates and no two children were the same.

Yet there was a niggling fear at the back of my mind.

In the summer of 2010 when Hugh was around 5 months old, the doctor discovered that his head wasn’t in proportion with his length and weight.

Coupled with the fact that his development was apparently delayed – he still wasn’t holding his own head up or focusing on things – it was deemed necessary to begin investigations.

For months I’d been convinced there was something ‘wrong’ with Hugh and wished someone would take me seriously, but as soon as there was talk of x-rays and blood tests, I immediately wanted to bury my head in the sand.

Prior to having the boys I’d taught children with autism.

I remember meeting parents who were reluctant to get a diagnosis for their child.

To me, as a teacher, it was simple, a diagnosis didn’t change who they were; it just enabled people around them to understand and offer the correct support.

Yet as a parent I wanted to run from the very tests and investigations that were aimed at finding a diagnosis for my son. I even toyed briefly with the idea of refusing the tests.

I felt a diagnosis would make it all the more real somehow.

It wasn’t just my imagination; there really was something to worry about.

I didn’t want a label attached to him; a word that could be used to describe and categorise him.

Perhaps I should have been careful what I wished for? Months of testing ensued, there were x-rays and ultra-sounds, blood tests and MRIs.

Letter after letter arrived at the house with words I could neither pronounce nor understand.

I took to desperate midnight searches on google trying to decipher the doctors’ jargon. Mostly it was convoluted medical terminology describing his symptoms; hypotonia (floppy), microcephaly (small head) but there was never an explanation or an answer for why he was this way; no diagnosis, no label.

I can still remember how confused and shocked I was when the pediatrician handed me a piece of paper with wiggly lines representing chromosomes and asked if I remembered anything from biology lessons at school.

It transpired that one of the blood tests Hugh had done – a micro-array – had detected that his chromosomes were all there but that some of them were in the wrong place.

Apparently any number of us may unwittingly have jumbled up chromosomes but usually it’s only when bits are added (duplication’s – like in Downs Syndrome) or bits are missing (deletions, like in Cri-Du Chat Syndrome) that this causes problems.

Hugh’s chromosomes were all there though which didn’t really explain the difficulties he was having.

I asked her what was ‘wrong’ with him, what was causing his difficulties, what his diagnosis was.

She explained that they didn’t know and that we may never get a diagnosis.

At that point I genuinely believed we were the only people in the world who didn’t know what was causing their child’s difficulties.

I assumed that once testing began, the doctors would find a cause and we’d be given a name of something that I could Google; support groups I could join with other people who could tell me what to expect. Instead, we left feeling incredibly isolated, having no idea what the future would hold for our son.

I attempted to join local and online support groups but without a diagnosis there really wasn’t anywhere we fitted in.

After hours and hours of searching online, I finally found one other parent in the same positions as us – they too had no idea what was causing their son’s difficulties.

Knowing there was at least one other person out there really helped me feel less alone and scared.

Shortly after, when Hugh was around 1 year old, the charity Genetic Alliance resurrected the project SWAN UK, which stands for Syndromes Without A Name and I discovered that there wasn’t just two of us in the UK still searching for a diagnosis but many, many more.

In fact, shockingly, approximately half of all children with learning disabilities don’t have a definitive diagnosis to explain the cause of their difficulties.

Since then, SWAN UK has gone from strength to strength and I have become an active member of the project helping to support other families who are searching for a diagnosis.

Without a label to explain their child’s problems, some families find that they are not taken seriously or that they can not access adequate help and support.

Sometimes there is the assumption that if doctors can’t find out what is causing the child’s difficulties, that it isn’t that serious or that the child will grow out of it.

Worryingly, some families have experienced disbelief and negative attitudes from school staff and medical professionals.

Often, people find it hard to understand how, in this day and age, with all the technology that we have, that children can still remain undiagnosed.

As the project grows, more and more people are finding out about SWAN UK and more families are able to access support.

Hopefully, we can reach a stage where no-one is left feeling isolated and alone in their hunt for a diagnosis.

Hugh is now nearly 5 years old, he still remains undiagnosed.

If you would like to find out more about SWAN UK you can find their website here: http://undiagnosed.org.uk/ You can also ‘like’ them on facebook: https://www.facebook.com/SWANchildrenUK