“I’m a Mum” that’s a very true statement but one that I’m not sure has completely sunk in even though I’m 17 months into my journey of parenthood. Something I once wasn’t even sure would ever come to fruition.

I was diagnosed with polycystic ovarian syndrome six years ago and when I asked what my chances of conceiving a child were, I was told it wasn’t impossible but it probably wouldn’t be easy. Lo and behold Jaxon was conceived when we weren’t trying for a baby. He wasn’t unplanned per se, I always wanted kids. I’d just planned to wait another year or two. I’d come off the pill to give my body time to readjust and naively believed that, given I’d been told I’d basically be lucky to conceive a child, it wouldn’t happen that fast.

I was still absolutely overjoyed (and panic stricken to high heaven) when I saw those two lines.

It was what I’d always wanted but the fear that a brand new person would be coming into the world and relying on me to keep them alive was very real.

Now, our journey has not been plain sailing and that’s putting it in the mildest terms. It has been hard work. REALLY hard work. It’s driven me to breaking point and there have been days where I’ve wondered how much longer I’d be able to carry on. 

You see when I was pregnant, I never anticipated that I’d be parenting such a complex needs child, especially when all our scans were showing that he was developing perfectly despite the fact I had idiopathic polyhydramnios.

Everything was fine until right at the end when I was 41 weeks pregnant and had a short period of reduced fetal movement. That was the beginning of life as I knew it changing forever.

HIE is cruel. It strikes the majority of families completely unexpectedly and it leaves parents having to navigate an utterly devastating path of uncertainty. Jaxon’s HIE event happened shortly before birth and left him with a severe brain injury. The nine months I’d spent trying to keep my baby safe, following all the rules to ensure he arrived into the world completely healthy felt like they had been for nothing. We still have no answers why, we maybe never will.

I was finally a Mum. Only I was now a Mum to a child who would likely grow up with profound disabilities. Who may never walk or talk. Who may never see or hear. Who may never be independent. Who may need 24 hour care forever. Who may not even live beyond childhood.

But despite my journey into motherhood being entirely different to how I anticipated, it has taught me much more than I could’ve ever expected. It’s taught me how to fight to get my child’s needs met. It’s taught me to scream and shout from the rooftops like never before. I’m not only a Mum, I’m a therapist, a teacher, an advocate. I’ve learnt more medical jargon than I ever did when I worked in health insurance. I’ve learnt how to do pump feeds, suction, give nebulisers, carry out therapies, adminster medication, recognise seizures. I’ve learnt how to read my child who despite his complexity, has a very cheeky, very colourful personality.

I’m not the Mum I thought I’d be but that’s primarily because my son isn’t the baby I thought he’d be. He’s no worse, nor better, he’s no less loved or less deserving of life. He’s just different and that’s okay. 

I’ve had to go through a period of transition like every other parent, only during this transition I’ve had to grieve the loss of the life I expected with the baby I imagined whilst learning to love the baby I’d already had to accept in the very beginning I’d lose. I’ve had to come to terms with the trauma I experienced at the time of Jaxon’s birth and the week following where I had to watch his tiny body vibrate as the oscillator breathed for him. I’ve had to try and cope with the memories of the times I reached through the incubator and felt his ice cold skin during the cooling process as they tried to protect his already injured brain. I’ve had to deal with the lasting trauma of signing an DNR to let him pass away only for him to surprise everybody and turn it all around, breathing entirely unaided once he was extubated. I’ve had to accept that I’ve been more affected than I thought and reach out for help to cope with the difficult feelings and emotions I deal with on a daily basis.

I’ve had to deal with the sadness of the first year as the impact of his injury became apparent, as he missed milestone after milestone. I wished the hours and days away, instead of breathing in and enjoying this miracle that I had in my life. Instead of enjoying my baby being a baby I spent day in, day out wondering what new challenges we’d be facing and where I’d gather the strength to carry on, whilst enveloped in anxiety and grief.

I naively believed before my child was born that the role was simply bringing up, loving and taking care of them.

That much is true of course but on this journey so far I’ve learnt it is so much more than that. I’m slowly learning what it really means to be a mother. It’s accepting and loving my child unconditionally, no matter who he is or what he’ll go on to achieve in life. It’s recognising that my child is incredible regardless of his struggles and finding ways around his challenges to encourage him to be the best version of himself he can possibly be.

It means being ready to take on any battle to ensure my child gets whatever he needs to give him comfort, happiness and security. It means putting my child first every single time and making every decision with his best interests at the forefront of my mind. It’s recognising that I won’t always get it right because there’s no such thing as a perfect parent yet never stopping striving to be the best I can be for him. It’s being ready to do whatever needs to be done because my child is my universe and I’ll do whatever is needed for him, all whilst just trying to be like every other Mum around me; simply loving and enjoying my baby.

Word on the grapevine is that World Sleep Day is on the 13th of this month.

To somebody who is so sleep deprived she’s borderline delirious, this sounds like absolute heaven.

My little boy appears to have no trouble sleeping – at the most inconvenient times.

For example, this kid seems to time his naps perfectly in sync with our speech and language appointments.

He may only be 16 months old but we still need these appointments to look at ways to teach my child who has a severe brain injury and is expected never to talk, how to communicate.

He is also the person that may one day help Jaxon to feel orally, although as each month passes I realise this is becoming increasingly unlikely.

I dread these appointments. They’re the ones we need Jaxon to be awake the most but he never is. It doesn’t matter if we do morning or afternoon appointments, you can almost guarantee in the waiting room he’ll drop off.

One theory is that he’s spent so much time in a hospital environment that he becomes so relaxed he can’t stay awake.

Another is that for the same reason he becomes so distressed that he almost switches off.

Once, on one of the many times we’ve unsuccessfully woken Jaxon, we conducted an appointment in the corridor near the door in the hope that the cold air would encourage Jaxon to wake.

We needed to try to progress from dummy dips with water to thickened liquids and we couldn’t do this with him when he was catching z’s.

He did wake and after a quick conversation about confidentially, I agreed I was happy to proceed in the least medical environment I’ve ever had an appointment in.

I’ve tried all sorts to wake Jaxon for these appointments, physiotherapy and stretches, tickling him, playing loud music, dancing around the room with him. You name it and I’ve probably tried it to no avail.

Come nighttime though it’s usually a very different story.

With Jaxon having so many hospital admissions due to recurrent chest infections, seizures and feeding issues in his short life, getting him into any kind of routine and sticking to it has been nigh on impossible.

It’s only within the past few weeks that I’ve been able to establish a bedtime that works. 8pm is the time I like Jaxon to be tucked up in bed and ready to sleep.

Tucked up he is, asleep he is not. I settle him down and head into the living room, baby monitor in hand with the sats monitor on for extra reassurance.

The majority of the time I’ll watch as he lies in bed, arms flailing around like he’s on the Big Dipper.

“Go to sleep Jaxon” I whisper into the monitor even though he can’t hear me.

As soon as he does drop off I can have a bit of time away from being Mummy which usually involves me doing all the adult jobs I haven’t had time to do during the days spent being Jaxon’s Mummy.

The small window between Jaxon being asleep and me going to bed gives me chance to catch up on washing, tidying, cleaning, sorting and all the other boring jobs that nobody enjoys.

I rarely get chance to just sit, relax, chill, SLEEP.

As soon as I go to bed you can pretty much guarantee that Jaxon will wake.

He doesn’t cry but I can hear over the monitor he either needs suctioning or he’s simply decided that 1am is the new 7am and it’s playtime.

His sats monitor will be beeping because he’s getting giddy and his heart rate will increase or his feeding pump will decide the witching hour is the perfect time to malfunction.

It’s a good job I’m a night owl and being awake at 3am doesn’t really phase me but the human body can only go so long without adequate rest.

Thankfully I have time to catch up on sleep when Jaxon is on sleepovers with his Daddy or Grandparents.

Usually though, when I am home alone, instead of getting an early night I spend the days running around doing things I find difficult to do when I have Jaxon with me like collecting medication, doing the shopping and other odd jobs.

Then come night time I lie in bed thinking about all the things I need to be doing round the flat in the short time I have before Jaxon comes home.

I rarely shut off for the evening and relax, just think about nothing other than mind numbing TV, chocolate and wine. I wish I could but I’m constantly on the go I find it extremely difficult.

Since Jaxon’s birth my ability to sleep and feel completely rested has disappeared.

I think that’s a Mum thing though. You never really sleep the same once you’ve had a baby. Despite most of my days being sponsored by caffeine I’m doing okay on such an excessive lack of sleep.

So I’m not sure what I’ll be doing on World Sleep Day, it’s unlikely I’ll be sleeping much though.

Tears fall down my face as I sit staring at the sats monitor relentlessly beeping as Jaxon is sound asleep.

I’m willing his numbers to climb. If they don’t then the nurse will come in and turn his oxygen back on.

That’ll dash any hope of going home in the next 24 hours and we’ll start the cycle all over again.

Minutes turn into hours, hours into days. Before I know it another week has passed.

The world keeps turning but I feel almost disconnected from reality. I guess that’s what the monotony of hospital life does to you.

My back is in bits as I toss and turn, wriggle and writhe trying to get comfortable beside Jaxon’s hospital cot on the put up camp bed that I’ve slept in more than my own bed these past few months.

I tell myself that despite how bad it feels right now, it could always be worse.

At least I’m inside and I’m warm. My child is here and that alone is a miracle.

It doesn’t change the fact that I’m completely miserable, watching life pass me by as I’m sit in a pit of emotional exhaustion that I’m struggling to climb out of.

We’re on our fifth inpatient admission in 10 weeks, our 12th admission since Jaxon was born 16 months ago. I have little to do in the confines of the hospital cubicle so I resort to counting our total time spent here.

I’m surprised by how many days we’ve lost to hospital life yet it still feels like so much more. We’ve hit almost 200 days. Given that Jaxon isn’t even 500 days old yet, that is a lot.

I tell myself it’s no wonder that I’m so done in.

The truth is, this is our reality and even once we get discharged, it’ll only be a matter of weeks or months if we’re lucky before we’re back here.

Jaxon is so medically complex that he doesn’t have the immune system to fight off viruses and infections like a typical child.

The common cold can floor Jaxon for up to six weeks and almost guarantee a stint on some sort of breathing support.

That’s why we have open access to the children’s unit. A magical pass that nobody wants to need.

It helps us skip the waiting in A&E but it’s just another in a long list of reminders that our life is so medical, that life will never be how I imagined it and it’ll never ever be simple.

I’m powerless to change our situation.

Whatever I do, however well I try to keep Jaxon, it seems to be to no avail at the moment and we’re stuck in a pattern of hospital for a week, home for a week, repeat.

It’s viral season, the worst time of year for kids like Jaxon and this season has been particularly rough.

Our little community has been hit hard with hospital admissions these past few months. A couple of our recent stays have been more like HIE gatherings where we get chance to catch up and grumble about the relentless and devastating consequences of our children’s complex needs.

I’m currently carrying the baton alone thankfully as all the other local kids are plodding along quite nicely.

I’m pleased for them of course, it doesn’t improve my situation any if they’re in here too, even if it does make it a little less lonely, but I can’t help but wish that was us too. That we were at home, instead of battling infection after infection.

A few days ago, I had a parcel delivered to the hospital. Flowers, chocolates and a lovely card with the most beautiful words written inside.

“If I could give you anything today it would be the power to see yourself through my eyes so you can see how amazing you really are.”

My secret fairy godmother I’ll refer to them as, they didn’t sign the card. This kind gesture brought me out of my pit of despair, if only for a moment.

It reminded me that no matter how done in or how down and out I’m feeling, I’ve survived so much and this is just another bump in the bumpiest of roads.

I only wish it was as easy as the council resurfacing the road to make my life a little less complicated but that’ll never be the case.

So instead I’ll take a great deal of comfort from these random acts of kindness.

To know that you are a thought in someone’s day, that they’ve gone out of their way to do something to remind you that you are loved and you are thought of is such a powerful and beautiful thing.

For now we are stuck here, who knows how many days or weeks it’ll be for this time. But I know that no matter how hard it all seems, how much it feels like I’ve hit rock bottom, Jaxon will be okay.

Together we will be okay.

It’s 10.30pm. The relentless beeping of Jaxon’s feeding pump is showing no mercy.

I’m frustrated and find myself shouting at this inanimate piece of equipment that keeps my son alive by providing him with the nourishment that he needs to thrive and survive.

Feeding tube awareness week has just passed.

Something I knew very little about before Jaxon was born but something I’m almost an expert in now.

I say almost because even when you believe you know everything there is to know about this method of feeding, tubes or pumps have a way of throwing an unexpected curveball from time to time.

Jaxon has been tube fed since birth. For the first nine months of his life he was fed via a nasogastric tube; a tube that goes up his nose and down into his tummy.

I was reluctant to take the next step by putting him forward for gastrostomy surgery because deep down I believed he just needed a little more time before he’d grasp oral feeding.

Looking back, my decision to refuse surgery initially just prolonged our agony and I wish I’d accepted the inevitable sooner.

Life is so much easier now with a G tube.

Despite Jaxon needing to go to intensive care for a few days following his surgery and spending a further five weeks in hospital whilst we found a feeding regime that worked for him due to him not being able to initially tolerate gastrostomy feeding, it’s not a decision I regret in the slightest.

His reflux has improved, he’s gaining weight like never before and no longer classed as a failure to thrive, there’s no more frustrating trips to hospital to get an x-ray to check the NG tube is in the correct place and no more waking up to find a yellow silk tube wrapped around Jaxon’s wrist when he’s yanked it out during the night.

A couple of weeks ago someone said to me “it’s not much quality of life for him is it, not being able to eat?”

It took me by surprise and made me question Jaxon’s quality of life.

He has plenty of challenges that affect him so to the outside world his quality of life may seem pretty poor.

There’s challenges we’re addressing every single day to improve things for him.

Being a tube fed baby is NOT something I recognise as giving him a poor quality of life, ultimately it gives him a life.

It gives him the opportunity to be here. Without his tube the reality is he wouldn’t be alive.

Even if he was, if we forced him to feed orally, chances are due to his brain injury he would likely suffer from frequent aspiration.

He wouldn’t gain weight, he’d suffer more chest infections than he currently does and he would be entirely miserable.

So as I shout at the feeding pump for the 30th time this evening, I’ll remain thankful that it exists.

I’ll be thankful that my boy has two buttons; a belly button and a gastrostomy button.

I’ll be thankful that the fact he is unable to orally take nutrition does not mean he can’t live.

Rewind 365 days and where were we?

We were confined to a hospital cubicle with a 10 and a half week old, medically fragile tiny human who had already stared death in the face more times that I’d care to imagine.

We’d spent all but nine days of those 10 and a half weeks in hospital.

I was miserable, I was mentally suffering with the effects of what happened to Jaxon at birth, I was struggling to bond with this beautiful boy I’d helped to create.

I was tired. I was scared.

I looked at Jaxon and I felt nothing but overwhelming sadness, guilt and pain.

I had no idea how I’d ever be able to adjust to a world with a child who had a life limiting prognosis when I’d spent so long simply preparing myself for the difficulties of dealing with sleep deprivation and breast feeding.

Little did I know the grand scale of adjusting that I’d have to do.

I wasn’t sure I’d survive. In all honesty I’ve had more meltdowns than I’ve had hot dinners this past year and that’s not an exaggeration.

I’ve been close to throwing in the towel on numerous occasions because I felt like I wasn’t good enough or that Jaxon would be better with a family more equipped and more prepared to deal with his complex needs.

A family who chose to take on this painful yet rewarding challenge perhaps could give Jaxon everything that he needs and so much more.

Despite these intrusive and painful thoughts, with the love and support of those closest to me I persevered.

It’s been a turbulent year of hospital stays, new diagnoses, surgery, chest infections, missed milestones, heartache and emotional torment.

But amongst the lows, I’ve learned such fierce love on a scale that at times it frightens me. I’ve accepted that what I planned for may never be and I’ve learned to appreciate and more importantly, love the child I have because he is the true definition of a miracle.

Especially given that on paper, he shouldn’t be here, not with everything he’s faced since his arrival 14 months ago.

I’ve become so passionate about raising awareness of children like Jaxon.

I advocate for Jaxon like no other, shouting and screaming until I’m blue in the face trying to access services that he needs to give him the best quality of life possible.

It’s tough going at times and I’ve hit many a brick wall along the way, but for the boy that never gave up on life, I must continue no matter how difficult it all seems.

So as we step into a new year and a new decade how do I feel?

I feel fear.

Not the crippling fear that I felt a year ago.

That was a combination of new mum fear with the added medical challenges that we face that were still all so new and so very raw.

I’m more in control of that now, I’m slowly but surely becoming an expert in all of Jaxon’s medical needs.

I don’t feel intimidated when we have to go to hospital, I believe instead the nurses and doctors trust my instincts first and foremost, after all, nobody knows Jaxon like I do.

But I fear that Jaxon has so many uphill battles yet to climb.

I fear that he’ll suffer so much through his life and I fear that his life could be cut short because of his medical complexity. Jaxon is living with uncontrolled epilepsy, Infantile Spasms.

That on its own comes with a whole bucket of fear.

So as 2020 begins, I’ll try to deal with the fear as best I can.

I’ll try to enjoy the happy times more. I’ll try to put the fear away in a box and live each day to the fullest that I possibly can.

If not for me, for Jaxon.

Happy New Year

There’s few things more frustrating when you’re trying to walk through the town centre or do some shopping than a complete stranger stopping you to ask for you to sign up to something to donate money every month.

Of course I understand it’s their job and somebody has to do it but during a two hour shopping trip I can be stopped by five different ‘chuggers’ representing five different companies.

I have donated to charities previously when I worked a full time job in health insurance.

Granted it wasn’t £100s but I did my bit for those who resonated with me or whose message I felt passionate about.

My circumstances mean that I’m currently unable to work, partly due to the fact I am now a full time Mummy to my beautiful yet medically complex little baby boy.

This means I have to count the pennies and I can’t afford to donate. So when somebody steps in front of me to ask me for cash I smile and say “not today, sorry”.

A few weeks ago I was walking through the town centre with Jaxon in his pram.

I heard a voice “excuse me, miss”. Here we go again, I thought to myself.

I looked up and smiled whilst continuing to walk on, I was tired after another sleepless night and I just wanted to do what I needed to get done. “Wait, wait you’re the first person that’s even smiled at me today” the voice said.

I didn’t know if this was part of his sales patter but something told me to stop.

“I work for the British Heart Foundation” he told me. I wanted to jump in and explain that he was wasting his time, I’m not in any position to donate and then we could both get on.

“Your baby is beautiful, does he cry a lot?” He asked me.

I thought that’s an odd question to ask somebody, especially a stranger.

Usually it’s “do they sleep well?” Or “are they good?” I didn’t really know how to answer. I could’ve explained that he’s not a big crier or I could tell the story of my little warrior, proudly to a complete stranger.

I chose the latter.

“He doesn’t cry much, he’s quite poorly” I started to explain.

I saw both the sadness and curiosity in the gentleman’s eyes as he looked down at my innocent little baby who knew life no differently than as it is now. “He was resuscitated at birth, he has brain damage. He has Cerebral Palsy, Epilepsy, a visual impairment and he’s tube fed.” I told him.

Information overload to this complete stranger of course but I watched and waited for him to say something.

“I’m so sorry. I don’t know what to say” he replied.

In my head I was thinking please don’t carry on with your pitch and ask me for money after I’ve just dumped a brief medical history of my child onto you.

“How do you do it?” He asked me.

I told him I just get on with it with the help and support from my amazing friends and family.

I told him how when it’s your child you just do. No matter what has happened or how you’re feeling, when your child needs you, you just do it.

There isn’t a choice or a second option. You do what you need to do for your child.

“You’re incredible” he said in awe. I just gave a weak smile and told him that I’m not.

I told him that I’m just a first time Mummy doing the best for my little boy, how I don’t always get it right but I make every decision for him with his best interests at heart.

Every decision comes from a place of love, a mothers love.

He took a genuine interest in Jaxon. He wanted to know what life looks like day to day and how he differs to his typical peers.

The conversation lasted only around 15 minutes but it felt like we’d talked for hours. I waited for him to jump in and try to encourage me to donate money.

He never did.

“Can I give you a hug before you leave?” he asked me. I could’ve cried as this genuine man, so full of empathy and kindness had taken time out of his day to hear our story held me and told me how his heart was full of love for the both of us.

He thanked me for stopping to talk to him. He told me I’d made his day.

The truth is I should’ve thanked him because not only did he prove me wrong when I thought the whole time he was asking me questions to soften me up to boost his commission, but he listened, he heard me and he allowed me to offload a portion of the sadness and the pride for my child that I carry on my shoulders on a day to day basis.

Maybe he went home, talked about the baby he saw at work that day who has fought battles far greater than anybody who hasn’t lived this life could comprehend.

Maybe he remembered us for the next few days as he went about his life. Maybe he thought about us as he saw somebody pushing a pram down the street. Who knows?

Me though, I said nothing about my encounter with this lovely man until now. But I haven’t forgotten the kind stranger in the town centre who, just for a moment, stopped and listened.

I doubt if I ever will.

It was world kindness day last month. A day aimed at making the world a better place by celebrating and promoting kindness.

Something that we’d all like to imagine is a daily occurrence, but sadly that isn’t always the case.

We hear so much negativity in the news, so much sadness and all the bad things happening in the world that the kindness tends to take a back seat. Kindness isn’t talked about as much as the negativity.

It’s commonplace. I’m guilty of it too.

When something bad happens or somebody does something that makes me unhappy I’m quick to rant about it, but I won’t always be as quick to scream and shout about something good or someone being kind.

Why is that? In all honesty I don’t know. Lately I have tried to be as open about kindness and good things happening as much as I am about things that make me mad or sad.

I think it’s good for our mental well-being to talk about the good happening in our lives, to focus on kindness and nice things.

I know from experience that talking about negative happenings can only cause me to ruminate and spiral further into a cycle of depressive thoughts so talking about happier, kinder experiences can only have the opposite effect, right?

I’ve experienced kindness by the bucketful (and then some) this past year.

It’s been the most trying time of my life but in amongst the rough ride, I’ve regularly updated a Facebook page dedicated entirely to the journey that my beautiful boy Jaxon is on.

I started the page initially because I couldn’t keep up with the abundance of messages that were landing in my inbox daily for updates on how Jaxon was getting on.

Friends of friends began to follow his page and before I knew it there was a few hundred people eagerly willing my baby boy on.

As the months have passed Jaxon’s followers have grown and grown, along with it so has the level of compassion and support we have received.

So many people have been on this journey with us through numerous lengthy hospital admissions, PEG surgery, several episodes on life support, difficult appointments, tough diagnoses, meltdowns, sadness, happiness, fun times, trying times, the lot.

Many times throughout the year I have been left entirely overwhelmed and a bit of an emotional mess after being shown complete and utter kindness from people I’ve never even spoken to, let alone met.

My faith in humanity has been well and truly restored and in those moments our journey hasn’t felt so big, I haven’t felt so scared or alone and I’ve realised that no matter how much sadness and how many evil people there are in the world, there’s as many good and kind people to outweigh them, they just don’t get the praise that they deserve.

When we were in hospital in the Summer, I received a lovely package from a kind lady that I’ve never met who follows Jaxon’s page.

She knew I was struggling with hospital life and I was so incredibly overwhelmed by her kind gesture, it came at the perfect time when I felt like the bottom of my world was falling out.

Jaxon has received some lovely gifts also, from strangers. We both have over the past year.

People who don’t know us, have followed his journey and through entire kindness have wanted to do something to help.

Those gestures are priceless and I hope those who have sent them know how hugely grateful I am.

At the beginning of last week, Jaxon was unexpectedly ambulanced in to hospital for an uncontrollable seizure.

Whilst there he was admitted and treated for a suspected chest infection and placed on airvo for three days.

It was a week full of planned days out. It was the most packed week I’d anticipated since Jaxon had been discharged from hospital in August.

I was looking forward to getting out and about with him, doing normal things. Another hospital admission wasn’t even on the radar.

Jaxon has overcome several colds without any medical intervention of late and he seemed to be doing okay.

My mood took a real knock when I discovered he’d be admitted for at least a few days and I realised just how difficult it was going to be to make plans in the future, especially around this time of year.

I sat in the same hospital environment that we spent last Christmas and the majority of the summer this year, thinking about everything we’d missed out on and the things we may go on to miss out on in the future.

We missed spending Christmas at home, we had our Christmas Day in January but it wasn’t the same. We missed out on all the summer fun, the family days out, the walks in the sunshine.

Life just passed us by whilst we were sat staring at the same four walls of a plain, boring hospital room.

I felt sad, I felt angry. I argued with the nurses and doctors about the fact we were stuck in there again. I wasn’t convinced that Jaxon needed to be on airvo given that his sats were stable, his chest x-ray had come back clear and his bloods were all fine.

But my energy resources were entirely depleted. That place has that effect on me.

The same hospital where all this started. I’d rather spend as little time there as possible, not to mention I worry about the effect it has on Jaxon.

I had to go along with what they advised though as they’re the experts and they’re supposed to know what’s best.

It got me thinking though whilst I watched the hours pass me by as I sat by Jaxon’s hospital cot.

How do parents and families of children with complex needs deal with the disappointment when plans are compromised because of their children’s medical needs? How do they plan holidays and days out when they know there’s a strong possibility they could be cancelled?

It goes without saying that my child’s health comes first above everything else and as long as he is well then ultimately, that’s all that matters.

I would never compromise his well-being for the sake of a day out, I’m the first to say he needs to go to hospital when it’s obvious that he’s struggling.

But there is so much about our life that is different to the families of typical children the same age as Jaxon. Sometimes I just want us to feel normal. For just one day, maybe even one week, just for a while.

It’s difficult enough that when we go out I have to make sure I pack his feeding pump or that if I want to get him out of his pram I have to be aware of his lack of head control and core strength, as even at one year old he still needs full support for a cuddle.

I have to be aware that he can’t enjoy the world around him like other children his age due to his visual and hearing impairments.

But that doesn’t stop me wanting to try to get some enjoyment out of this life we’re living.

So understandably I was disappointed.

The irony of it all was that Jaxon was discharged from hospital on Friday night, just after all our planned trips had passed.

Typical. But we went home, got into our Children in Need onesies and had a night in front of the TV.

I still felt sad about everything we’d missed that week but I was glad to be in the comfort of my own home once again, with my boy by my side.

If I could wrap Jaxon up in a completely disinfected bubble I would, I’d do anything to keep him at home.

To keep him here with me and not in a strange place, albeit not that strange anymore given that he’s spent almost half of his short life there.

It’s the worst time of year for kids with complex medical needs and compromised immune systems.

Everybody gets poorly in one way or another because of the change in weather. But for our kids it can result in a month in hospital on airvo, CPAP or even mechanical ventilation.

It’s a frightening time of year. Jaxon was only a few weeks old this time last year so he was more vulnerable then, but that vulnerability is still very much there, it’s still very much real and it has to be at the forefront of my mind day in, day out.

So, what do we do? Let the world pass us by, not make any arrangements for fear of the difficult emotions that come from them being cancelled time after time?

Or do we make plans and try to handle the disappointment as best we can when they don’t come to fruition?

Just accept that this is how it is and one day, hopefully soon that we might be able to enjoy something without it being ruined by a hospital admission or another illness?

In all honesty, I’m not really sure. I guess we have to do what we’ve been doing until now. Take it one day at a time, prepare for the worst and hope for the best.

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.