For the Junior Doctors, new nurses and others

I often read posts about doctor’s who didn’t listen.

Or pharmacists refusing a prescription that wasn’t properly completed.

It touches a nerve, as I teach healthcare students. They are brilliant, intelligent, enthusiastic.

They don’t sign up to many years of incredibly hard work because of the money. They genuinely want to help others.

So to all the new doctor’s, nurses, pharmacists etc., currently starting out. Remember you are human.

You don’t know it all, not by a long way. But you know enough and you’ll learn more daily.

Remember to speak to your patients with the kindness and empathy you showed when training; patients with chronic conditions know about the impact of them.

Never tell someone ‘its only pain’. If I hear you say ‘its just a virus’ prepare to see me coming for you like a missile. HIV is also ‘just’ a virus.

Listen to the parent who says something ‘isn’t quite right’. Their instinct is telling them something, listen.

You studied, learnt the drug names, side effects, and therapies.

Your patients look to you for help. Respect them. Show the compassion we know you have in bucket loads, never stop listening and learning.

Parents/patients; remember that they are human and are as entitled as anyone to have a bad day.

If a nurse is a bit short with you, let it go.

If you’re waiting for hours to be seen be thankful – the person rushed into resus isn’t so fortunate.

Be patient, you don’t know what staff have just dealt with, which doctor or nurse has had to comfort a mother or father as their child passed away in their arms.

Remember, there is a reason why the doctor wouldn’t prescribe a particular medication for you, despite what Dr. Google says.

It is their job to know the research only just released, and that drug may not be the lifesaver you believe it to be.

If we could all be a little kinder, it would make difficult days much easier.

I for one am in awe of these individuals so dedicated to healthcare.

To them and their patients, be the change you wish to see in the world.

I saw it coming, but it still hurts

October marks World Cerebral Palsy Day. Countries all over the world go green to raise awareness and support the millions of people who live with the condition.

This time last year, what I knew about Cerebral Palsy I could’ve written on a postage stamp.

It didn’t directly affect me and whilst I’d met people with the condition, it wasn’t something that I was all that familiar with.

Fast forward just twelve months and I’m coming to terms with the fact I learned that Jaxon has CP by reading it on a discharge letter after a week spent in hospital with a chest infection just a few short weeks ago.

Now I’m not completely naive.

Jaxon took a long time to be resuscitated.

He has global brain damage. He has stiff limbs and a weak trunk with very little head control, I liken holding him to trying to cuddle a moving plank of wood on some of his worst days. He doesn’t feed orally. He doesn’t use his arms and legs like a typical baby. He has uncontrollable seizures.

I knew the diagnosis was coming.

But I read the discharge letter on a Sunday evening, sat alone in my flat whilst Jaxon slept in his chair beside me.

“Other relevant history – Cerebral Palsy following HIE”

It hit me like a lightning bolt out of the blue. I’d prepared myself for the diagnosis yes, but in a room with Jaxon’s paediatrician.

I’d have time to absorb the information and ask all the questions that would pop into my head.

THIS was not how I was supposed to find out.

I felt vulnerable, lost and utterly bereft. I cried. Not for the diagnosis but for the lack of empathy in how it had been delivered.

I went through a range of emotions that evening. Anger, sadness and guilt were the main ones.

I know that a diagnosis of Cerebral Palsy is far from the end of the world. Many many children lives happy and very fulfilling lives with the condition.

It also opens doors for us to access more services and receive more support. When people ask about Jaxon, rather than explaining that he has HIE, a condition that nobody has ever heard of unless it has affected somebody they know, I’ll be more inclined to tell them he has CP.

So how do I feel about my son receiving a CP diagnosis?

In all honesty, I’m still not sure if it’s completely sunk in.

Maybe that’ll come when I have chance to have a discussion with Jaxon’s consultant.

All I know now is that when I look into the eyes of my beautiful boy, I don’t see a disability.

I see a baby. A baby who just wants to be warm, loved and fed just like every other child his age.

Yes he may have complex problems but underneath it, he’s got the same needs a typical baby has too.

Of course I feel sad. I feel angry. I feel guilty.

But I will do everything in my power to channel these feelings into helping give Jaxon the best possible life, however that looks.

Jaxon may have Cerebral Palsy, but that does not mean that Cerebral Palsy will have him.

Helpful Halloween hints for children with additional needs

Halloween is a time of the year that many children really look forward to, a time for fantasy and fun, a time for dressing up and scary stories, a time for ‘trick or treat’ adventure and lots of sweets!

The marketing around Halloween seems to ramp up to even greater heights every year, with major supermarkets dedicating whole isles, sometimes several of them, to their Halloween merchandise.

Advertising supports this with lots of TV adverts featuring ghosts, ghouls, pumpkins and spiders’ webs. Then there’s the BBC Strictly Come Dancing ‘Halloween Special’!

But while this is a fun time of year for many children, it can be a really difficult time for some, including many children with additional/special needs.

For them it can be a confusing, anxiety inducing, or even utterly terrifying time.

But it doesn’t have to be like that; if we stop for a moment to think about the things they might find hard and how to put things in place to help them, they can safely join in the fun too. So, what are some of the things about Halloween that children with additional needs can find hard:

1. Stranger Danger?

We tell children all year not to talk to strangers, then on one night it’s suddenly fine to go around knocking on strangers’ doors.

This can be hugely difficult for some Autistic children, for example, who are often very literal in their understanding and can be very confused by this. Why is it OK to speak to strangers today but it wasn’t yesterday? What has changed? What will the rules be tomorrow? Why?

2. Fake or Real?

The more garish dressing up can be genuinely terrifying for a child that struggles to tell the difference between fake and real.

Increasingly, we’re seeing dressing up outfits becoming more realistic with fake gore that makes people look truly terrifying. When that line is crossed for a child that believes that the person really has hideous injuries or has been turned into something evil, theirs is the terror that is real. Cue massive meltdowns, sleepless nights, and recurring anxiety.

3. I’m Scared Enough Already!

Talking about anxiety, some children with ongoing anxiety issues can find the whole business of going out ‘trick or treating’ very upsetting.

Surprises, scares, people jumping out, can all be terrifying.

If it’s hard to deal with the day-to-day anxiety that they face about going out on a regular day, ramp this up multiple times when Halloween is involved.

4. What About Me?

Then there are the kids with additional needs or disabilities that don’t get invited to parties or to go ‘trick or treating’ because they are different.

Here’s another opportunity for them to feel left out, rejected and uninvited because they haven’t been included… again.

5. Parent Problems

It’s not just the kids. Parents of children with e.g. ADHD may not find their children being given loads of sugary sweets very helpful when they are up all night with a hyperactive sugar fuelled child.

There are loads of other reasons beside these, but there are also ways to make Halloween easier for children with additional or special needs so that they can join in too.

Here’s a few ideas:

Helpful Halloween Hints 

• Prepare them in advance, giving them a visual timetable of what is going to happen, how and when.
• ‘Prime’ some friendly neighbours who are known to your child and that you can visit safely with your child knowing that they won’t do anything too scary or surprising.
• Choose less gory and blood-soaked outfits. It’s more about the dressing up than who can look the most terrifying and there are plenty of options to choose from.
• Choose sugar free sweets, or better yet try some healthier snacks themed around Halloween (satsumas as ‘mini pumpkins’ for example).
• If you are hosting a party, think about who might be left out and make sure you invite them.
• Have fun but keep checking on how your child is feeling. If they are struggling, have something that they love doing ready at home, so that you can easily return to that and help them have fun in a different way (carving pumpkins – they don’t have to be scary, making pumpkin mini-pies, decorating a jar to put a battery night-light in, apple bobbing, toasting marshmallows…)

I hope that Halloween is a spook-tacular success for you all this year, especially for those of you with children with additional needs.

The measure of a marathon

My husband and son competed in a marathon recently.

They trained hard and raced harder, crossing the finish line after 26.2 gruelling miles within a single second of their desired race time.

As a wife and mom, I thought my chest would burst with pride as I screamed and cheered until my face was beet colored and my voice like sandpaper.

To some marathon competitors, organizers, and onlookers the feat that my son and particularly my husband achieved was even more extraordinary than simply running for over twenty six miles.

Did I mention my son is only six years old? He also happens to be unable to walk due to a medical condition that has taken his ability to move his body or speak.

My husband ran the race pushing my son in a jogging stroller.

Throughout the course of the race, my husband was met with many comments about the “easy” role my son had or wonderings about how my husband felt in regard to bearing the brunt of the hard work.

While it may have appeared that my husband was working harder than my son, that was far from the case.

In their defence, what people saw was a man running a marathon while pushing more than sixty pounds of child, stroller, and equipment.

However, what they didn’t see were the months before the race when my husband would not have risen from bed to train in the wee hours but for the shrieks of my son calling out to him and reminding him of his commitment.

Onlookers didn’t see the training runs when my husband ran many miles farther than planned because my son’s persistent squeals of delight and encouragement urged him onward.

Fellow marathoners didn’t see my husband doubled over with cramps at mile fourteen of the race when he caught my son’s eye and they together chose to push on through their pain.

Those on the outside couldn’t see the eyes of my son meeting his daddy’s eyes mid-run, uplifting him and spurring him on when exhaustion set in.

Very few see the incomprehensible pain my son experiences during and after being taken for runs and the way he chooses to race time and time again despite his knowledge of the horrific pain he will experience

My husband and son have very different roles when they run together. But they do not have uneven roles.

I am so proud of my son and husband for competing in a marathon.

However, I am just as proud of my children who do not battle debilitating medical conditions when they work hard and achieve their goals.

The reality of my boy’s diagnosis has taken so much from him. But it will never rob his ability to think, to feel, to connect.

He is as capable as anyone of setting a goal and working to achieve it.

If I were to set him on a pedestal or rank him in a special category of hero simply because he has a disability, that would discount the reality of who he is, what he thinks and feels, and what he works so hard for.

As much as I want to say my husband and son are the only true winners of the race or that their determination makes them heroes, I know that isn’t true.

Months ago, my husband and son set a goal. They worked and trained incredibly hard.

Both of them brought their strengths and weaknesses into the light and worked together to become a magnificent team.

Then, they achieved the goal they trained so hard for—together.

Does that set them apart? Does it make them exceptionally brave? Does it make them inspirations and heroes?

No. Not any more than any other competitor who ran the race that day.

Not anymore than the rest of us who run our own race, face our own fears, feel our own pain, and achieve the prize our eyes are set on.

Winds of change

For a few weeks now, I’ve been having really bad anxiety. Struggling to breath, irrational thoughts and being constantly highly strung. My son was about to start high school and I was petrified.

We found out just before school finished for summer that Cameron had passed his SATs, and not just scraped through he had strong results.

I literally cried – you see we were told not to worry about the SATs and his performance in them, that he would try his best and will have the opportunity to work on the results once he goes to high school.

I felt that they expected him to fail, but he was changing.

We went to town celebrating the success and really made a big deal. I told him that this was an amazing opportunity and strong start to his high school life.

I set that expectation and understanding that by trying his best and getting remarkable results – we would reward him accordingly.

Yeah ok – we basically just told our kid were going to bribe him through high school but he was changing.

So; a mainstream high school setting it is and after literally two years of researching schools, having visits, checking Ofsted reports and bus routes it was all building up to this moment.

I was worried about him doing his school tie and the getting use to the feel of shirts, I was worried about him losing his bus pass that was literally a NIGHTMARE to obtain, I was worried about him getting the school bus, I was worried about him making his way around school, then I was worried about him and his fussy eating habits at lunch.

He was changing though.

He learnt to tie his tie within a couple of hours and we made a game of random “tie checks” where he would drop everything and tie his tie. Mastered it. He said the shirts felt nice but just the top button was a bit tricky, “don’t worry mum, I’m sure it will be fine”.

I would ask him “what would you do if the bus was late” and “what would you do if you missed the bus home”, bombarding him with, in my mine nightmare scenarios. He just looked at me and said, “just ring you or dad or nana” and I forget that the autism literally just provides him with black and white answers.

No overthinking, no what ifs – just matter of fact problem solving answers.

When he started school he was texting me telling me he was on the bus and he will see me soon, then at home time he was texting again to tell me he was on his way back.

He started showering every day upon his return and getting his bag ready for the following day before tea.

When I asked about what homework he had to do (although yes, I already knew with all these fancy pants apps school provide nowadays) he told me that he had been to the library at lunch and started/completed it so that he had more spare time in the evening.

He even had two lots of fish and chips on “chippy Friday”. He had changed.

I suddenly realised that in these last three weeks without realising it my breathing has returned to normal.

The anxious thoughts are few and far between. I’m not constantly checking “find my iPhone” in the morning or at home time because he has adapted so so quickly and amazingly as he has done so many times before over the years.

I feel guilty for not giving him anywhere near as much credit as he deserves and know that in fact we are doing a sterling job, he is a 100% rule follower and a respectful kid.

I know this because when he’s asking me “mum when might I be able to start to say a swear word, everyone swears on the school bus” and I have a conversation with him about how swearing isn’t nice and its most likely those kid’s parents don’t know they are acting in that way – but that if he wants to say the swear word for poo then me and dad don’t mind and he chuckles.

I know he won’t abuse this and absolutely follow the “but not in front of any teachers or grandma” rule attached to it.

He’s changed and now I need to change for us to get through the next stage.

Dealing with the yukky stuff

As I headed upstairs to get James up this morning, I heard him giggling… Now normally this is a sound that absolutely thrills my heart, but I know James all too well and at 07:30 in the morning it is rare to get so much as a grunt out of James.

Giggling meant trouble; my heart sank…

Sure enough, as I entered James’ room, an all too familiar scene greeted me (and my senses!)

James occasionally, overnight while he is relaxed and sleeping, does a “Number 2”. The good news is that he still wears a pad at night, the bad news is that if he wakes up early, he will start to play.

Whoever discovers him in the morning will usually shout for help with the dreaded words “brown alert!”

This morning, as I was once again cleaning James, his bed, his room, you surely can’t blame me for sighing (not too deeply… the smell!!) and wondering what other dads were doing at that time.

Maybe enjoying their breakfast, or chatting with their family about what they all had planned for the day. Maybe watching the latest news over a cup of tea or coffee before heading out for the day.

Not many would be clearing up poo.

My sigh didn’t last long though, certainly not as long as the unmistakable aroma that is still permeating every corner of the house at the moment despite having all the windows open!

I was reminded that I was not the only dad, or mum, who had faced a similar start to the day.

Many parents and carers across the country will have faced the same, maybe even worse, and as I carried on cleaning I could almost hear their voices encouraging me and reminding me that dealing with the ‘yukky stuff’ is an often inevitable consequence of additional needs parenting; I could almost hear them whispering to me… “I’ve done this, you can do it too…”

As I finished cleaning James, his bed, and his room up this morning, I felt just a little closer to those other parents and carers through the experience.

My love for James is unconditional, it isn’t affected at all by what he does; neither is other parents and carers love for their child.

Living in a way that serves James and my family is living like many others live and no matter how many times I keep getting it wrong they are the role models that I am inspired to follow.

It’s a lifestyle that is hard, but which also brings joy, fulfilment, satisfaction and love.

For each of us, we face a choice… what kind of life do we want?

Do we want the ‘It’s all about me!’, ‘Because you’re worth it!’ self-centred, self-obsessed, self-serving life that is shoved at us all the time through wall-to-wall advertising? Shallow, worthless, unfulfilling and empty though it is? Or do we want to love, live and serve like these inspirational parents and carers, rolling our sleeves up sometimes to deal with the yukky stuff in our lives and in the lives of others, but knowing that through it all we are living a life that makes a difference, that is inspiring, that is deeply fulfilling?

I know what my choice is… now, where are those wet-wipes again!

Accept and embrace

One of the things I’m not ashamed to admit is how intimidated I am by all the medical, non-typical equipment that makes up a fragment of your survival kit as part of caring for a child with complex needs.

Jaxon is only one so we don’t have half as much equipment as some of my friends children who are living a similar life to us.

In fact I can actually count on one hand how much equipment we have that is different to his typically developing peers.

Our first piece of equipment was a feeding pump. Something I’d never even seen before, never mind expected to need one day to keep my child alive. After hours and hours of gravity feeding though, I wouldn’t be without it now.

But it took a while to accept that this would form part of our new normal.

It’s relatively user friendly, quite small and compact so we can use it on the go.

People occasionally stare wondering why I have a long wire trailing from Jaxon’s pram but the stares are the least of my worries.

It’s when the pump malfunctions that I go into a meltdown. Either the feed is too thick that it’s clogged the tube or there’s a kink in the line somewhere that’s stopping it going through.

Many a time I’ve shouted, screamed and swore at this inanimate object that in fact, makes my life a whole lot easier.

The second piece of equipment we were given was a suction machine. I’d seen them in hospital hooked up to the walls but there was no chance you’d ever catch me popping a catheter up Jaxon’s nose to clear whatever was hiding away in there causing his sats to drop.

Or so I thought.

Now, I’m almost a suctioning pro. I can use our machine to clear his snotty nose, his sicky mouth or if he’s having a bad day with his secretions, it makes my life a great deal easier.

His secretions have been much worse of late due to the fact that he is teething but the suction machine means I don’t have to worry about him becoming distressed.

It takes me a couple of seconds to clear his mouth and he’s comfortable again. Going into hospital is the same, I don’t have to buzz the nurses in to clear his secretions. I just connect a catheter, suction away and we’re sorted.

I’m not a fan of emptying ours though. Yuk.

It’s not what I imagined, but it makes Jaxon more comfortable and his comfort matters more than how I feel about using all these gadgets.

Our third piece of equipment is a Leckey Squiggles Early Activity System. It’s similar to the Playpak.

It helps with Jaxon’s posture and positioning. It enables me to comfortably place him in different positions that will aid his growth and development whilst giving him the support that he requires due to the low tone in his trunk.

When our physiotherapist first brought it to us I wondered how I’d ever get my head around it.

Now though, I can safely put him on the floor knowing he will be entirely comfortable and safe.

The latest piece of equipment that we are being provided with is a P Pod. I’d always imagined my baby sitting next to me on the sofa watching TV or in a high chair.

It was a difficult conversation and initially I struggled to accept that he’d need a big bulky chair just to be comfortable.

We went to meet with a seating representative last week and I nervously passed Jaxon to our physiotherapist whilst she placed him in to the demo chair to see how he would tolerate it.

I struggled to hold back the emotion. Not because I felt sad. Quite the opposite.

For the first time I saw Jaxon sitting completely comfortably, more than ever before.

He melted into the seat and brought his arms up beside him, as if he were a king upon his throne.

I knew then that it was time to accept that this might not be what I imagined, but this is what he needs.

He needs this chair to be comfortable and that’s okay so I had to embrace it.

Seeing Jaxon sat so nicely filled me with pure happiness, I excitedly asked how long it would take before we would receive it.

We will receive the P Pod in a few weeks time and I’ve never felt such excitement about receiving a piece of equipment that I never thought Jaxon would need.

I’ll be like a kid at Christmas on the day it is delivered, I just know it.

I know in future we will need more equipment that his typically developing peers won’t need.

If I can learn to embrace rather than fear it though, I know we’ll be okay.

We are THAT family

It took us about 5 and a half years to realise it. But we are THAT family.

You know every year you see these massive charities campaigns like “Children in Need” and “Comic Relief”, or when you see people avidly fundraising for their local hospital or local charities…

We are that family. You know the ones where the camera focuses closely on the family as they relay every traumatic ordeal of their journey thus far.

I remember growing up and watching things on TV and seeing people with poorly children.

I couldn’t think of anything sadder.

I was fortunate enough to have a very healthy childhood, as did all of my friends. I didn’t know a lot about disability, even less about medical conditions or hospitals.

The most I ever saw of hospital was if any elderly relative was poorly or needed an operation.

I thought hospitals were for older people. Not children.

So when I saw it on TV I would feel grateful and priviledged. It didn’t look like a world I would ever be part of. I would empathise with their stories, well up with tears, even let out a little cry.

Then I’d return to my usual activities and forget all about it

What had happened to these people that they ended up in this situation? Well, it just happens. And as we have learned, it can happen to anyone.

I remember the first time I saw DIY SOS (it’s a show on the BBC where they rennovate/adapt someone’s house, often for someone with limited mobility or high medical needs). Again, I’d feel the heat rush to my cheeks, and I’d well up and feel deep emotion and empathy that these people can’t even leave hospital until something drastic is done about their living situation.

Well yeah.. again, that’s us! *waves emphatically*

This year we were lucky enough to be a small part of Global’s Make Some Noise.

We regularly attend this fantastic place in Derbyshire called Reuben’s Retreat. It is a wonderful place.

It is for families who have a bereavement, or a child with a life limiting/life threatening/life long condition.

When we go there, we meet our people, our new family. A community I never knew existed, one I never expected to become a part of.

We got to cheer on TV presenter/radio DJ Jamie Theakston as he embarked on a 650 mile bike ride from Edinburgh to London to raise money for 100s of amazing deserving charities.

We went a long not really knowing what to expect – what an emotional day it was!

As Jamie appeared at the top of the hill we cheered, clapped, and waved banners and flags.

I squeezed Amy’s hand tight and helped her jiggle her arm to show our support. The emotion caught me out of nowhere, the intensity of his bike ride, the commitment he had made to our families, the solidarity between us all.

This was the world getting to see a snapshot of our lives. It was a platform for us to tell our stories.

Once inside Jamie had photos taken with families, chatted with people, and interviews were done.

I already know most of the stories of the families with us, but hearing them later that week on Facebook really drove home how hard hitting our situations can be.

Stories of parents who will one day lose their child. Parents of children who grieve their child everyday. Then families like us, where the future is this big question mark.

I’m not a huggy person, but I wanted to just hold everyone tight and tell them that no matter what we all have each other and we can get through this. We’ve all come through so much already.

It was a truly surreal week. The following day I was somehow in the city for 5am following Jamie in a media van with Reuben’s mum (Nicola) and my friend Christine.

We did live interviews on the radio. Throughout the week some of my pre-recorded interviews were aired too. All on different stations. I got so many messages from people being astonished to hear me as they drive to work. It was bizarre.

I am not a confident person. But if it’s about helping a charity, helping our family, raising awareness, or talking about Amy – all anxiety is forgotten and I will do my damndest to make everyone proud.

I remember at my old job. There was always a hike for charity to sponsor, always a cake sale in aid of something (usually, ironically, heart disease or diabetes!), football scratchcards, dress up days and so on.

It always struck me as unusual that so much charity is needed. Charity is reliant on the goodwill and hard work of others.

It is a shame to think so much charity fundraising is needed to help keep people and hospitals afloat. It makes me wonder what the wider political implications are of it.

I have seen first hand what this money can do.

One day in the future, Amy will be able to access lodges with a hydro pool, cinema screen, sensory room.. and most importantly… changing places with level access and a hoist!

It’s an actual dream come true for families like ours. There aren’t many “retreats” for us to escape to.

Sadly there isn’t a Reuben’s Retreat in every town or city. Currently she gets to access animal therapy, music therapy, themed accessible days with exciting activities.

These aren’t things readily available to children like Amy and I can’t even begin to describe the level of gratitude I feel with each visit.

Having something to fight for, something to help… it gives you purpose.

Life can often leave you wondering why am I here, what are we really doing.

I realise now that I want to be here for Phil, and Amy, and just everyone. I want to make peoples lives easier and happy. I want to make important family memories. I want to change how the world thinks about families like ours.

I want to tell our story. I am so proud.

They also host coffee mornings for parents. Usually the topics are tiredness, accessibele venues, equipment and so on. I always leave having learned something new, and sat in an environment where we are “normal.” You can’t put a price on that.

Do you ever see those money boxes in McDonalds for Ronald McDonald house? Another thing I’d donate to not really knowing where that money went or what would happen with it.

I now realise just how incredibly important just a few pennies from people can be. When your child is fighting for their life on intensive care and you don’t live nearby.. what can you do?!

You can’t afford a hotel every night. The thought of being apart from your child is unbearable, it’s not even worth contemplating, especially if the worse should happen.

Well now I see the value in those boxes and have first hand experienced the life line that places like this provide to people in a tough situation.

We’ve had social media campaigns to fundraise money for Amy to have a chair she can sit comfortably in that isn’t all about postural support, because she can’t sit on a sofa. It was seeing my child’s image banded around the internet as a “desperate appeal”. It was astonishing how many people wanted to help.

A lot of people in my life will say their work is raising money and ask me which charities I would suggest. I could honestly name off the top of my head, at least 15 deserving places that have helped us directly.

There are so many amazing causes out there that deserve funding and respect.

I never once thought we would be THAT family.

I don’t want our story to be a sob story. I also don’t want us to be the heroes in this.

I just want others to put themselves in our shoes and know that if they can help in any way to make everyone’s lives easier then doing that will be one of the best things they ever do.

My heart does ache sometimes, especially when the reality of our situations become so apparent, but at the same time I have learned so so much, I am so humbled, grateful, and in awe of all of the families we meet. I have met parents and children with a strength they never knew they could have, a strength a lot of us don’t even know possible.

We are THAT family.

People will see the videos and pictures. They will see the wheelchair, the splints, the suction machine, the feeding tubes, the nebuliser, all of it.

But look past that. Look at the smile on my daughter’s face.

A lot of work goes into keeping that smile there and it is worth everything to us.

If you see us, smile. Celebrate with us. Say hi. We’re just like you really.

A plea to vaccinate

I want to ask everyone who reads this to learn about vaccination.

Not the scare stories and absolutely not THAT discredited study.

I need people to realise their importance; if not for your own children, for children like mine.

People who have never had flu to say daft things like ‘I’ve got a touch of flu’. Believe me, if you are upright and walking then you almost certainly do not have the flu.

People today do not understand how dangerous it really is.

Flu attacks your lungs, airways, muscles (remember your heart is a muscle). Every year hundreds of patients die due to complications of flu – many of these are children.

Two weeks ago, Sam contracted the flu.

In 8 hours he went from being wheezy to critically ill. His lungs filled with thick fluid, and he needed additional oxygen to keep him alive.

His fever rose so rapidly that his entire body was red and blotchy and every touch/movement was excruciating.

His heart rate skyrocketed; lets just say he had more than one foot through the door to intensive care.

He has needed 24/7 oxygen, half hourly nebulisers, IV fluids/antibiotics/steroids, regular blood gas checks, physiotherapy three times daily together with deep airway suction just to get him stable.

After a week of intensive medical support he started improving gradually and shortly after was well enough to come off the oxygen and IV’s.

He is now home to continue recovering.

Sam has neurological disabilities, a group with a very high risk of life-threatening complications from flu.

He has the vaccine every year; there have only ever been two years when he hasn’t had the vaccine; when he was too young and this year as he caught the virus before the vaccines arrived.

Both times he has had to fight for his life.

If you don’t vaccinate your child your decision affects those who are high risk like Sam and those who can’t be vaccinated; newborns and children having cancer treatment for example.

So don’t tell me that you don’t believe in vaccination; or that it’s a ‘big pharma’ con.

Very few have a good reason not to vaccinate; so for their sakes if not your own, go get it done.