Special needs parenting: Talk to us

As I stood in the queue in the coffee shop earlier this week, inside the children’s hospital that has been our home for over four weeks, my attention was drawn to the little girl sat with a lady.

She may have been her mum or she could have been an auntie, maybe even a guardian or a foster mum.

These people were strangers and I don’t know their story.

The little girl had a feeding tube.

A tube that is placed directly through the nose into the stomach or bowel.

I looked over at her, I caught her gaze.

The new way that society works with the use of face masks to protect us all from this deadly entity that has brought the world to a standstill for over a year meant that she couldn’t see the warm smile I sent over to her direction.

But it was there. It wasn’t a smile of pity. It was a genuine smile.

I wondered what her story is.

She seemed happy and she played with a toy on the table.

That’s all we want for our children isn’t it? We want them to be happy and healthy.

Of course we all want our children to grow up, become successful and who knows? Maybe even change the world.

But ultimately we want our children to be happy and healthy.

I wished I’d been able to go over and talk to them but due to a combination of lack of confidence as well as social distancing measures that are currently in place and that need to be respected, I felt I couldn’t.

I don’t even know what I would’ve said.

I wouldn’t have wanted to appear rude, maybe I would’ve just let her know that we share a common denominator in that my child too has a feeding tube albeit his is now in his stomach.

It might’ve just been an exchange of those few words or it could’ve led to a full blown conversation.

Who knows?

As I collected my order and was about to leave I glanced over at them again.

Lots of thoughts ran through my head.

The main thought being I hoped they didn’t think I was being rude.

I smiled once again behind my mask as I walked back to the ward where my child was.

Often I have walked down the street where I have passed people who have blatantly stared at us as I push Jaxon around in his wheelchair, his tube trailing round the back leading to his feeding pump bag.

Sometimes people have stared as I’ve tried to assemble his chair in the car park.

There’s been many situations where I’ve felt the scrutiny of strangers gazing at us when we have been out and about.

A glance is one thing but to stare is unnecessary.

I can’t speak for others but it makes me incredibly uncomfortable.

Whilst it wouldn’t be what everybody would want, I’d much prefer those who are staring to come over and talk to us, even at a distance if social distancing measures remain in place.

“Be kind” was the motto at the beginning of 2020.

Staring isn’t kind, it’s rude and unnerving. Glancing over, smiling and giving a brief acknowledgement isn’t rude.

A smile can change somebody’s day.

But to glare at somebody because they may look different, they may be more vocal than you deem appropriate or because they are disabled can make them feel incredibly awkward.

It can make an already difficult situation a million times worse.

This particular experience got me thinking about all the times we’ve experienced prolonged stares from strangers.

In those early days when Jaxon was a baby and the world of disability was so new, all I wanted was to feel some sort of normality.

Strangers staring at us in the street made me feel even more isolated from society.

I wish those who chose to stare would’ve come up and spoke to me, asked me questions and gave me the friendly smile that could’ve changed my day.

Some did come and talk but occasionally their remarks would be less than helpful and leave me feeling utterly despondent about our life.

Some would ask questions, not intrusively, just through curiosity.

They were my favourite encounters and I’d welcome them going forward.

I’m very much a people person.

I have a page on Facebook where everything is laid bare when it comes to talking about my experience of parenting a child with complex medical needs.

I’m not afraid to share the ups and the downs.

I’m not afraid to publicly declare the pride I feel on a daily basis for my little human.

I definitely wouldn’t be afraid to share our story to a stranger in the street if we were approached in a kind manner.

So as the world does slowly return to the way it was before and in the future when social distancing is a thing of the past, if you see somebody who doesn’t quite fit your idea of normal, don’t just stop and stare.

Glance over and give them a smile.

If you feel confident enough, talk to them.

You never know, it could change their whole day.

Behind the blue curtain

Sitting in a hospital cubicle as I wait for my child to be assessed in the emergency department this evening, I can’t help but overhear the family in the next bay to us.

The doctor is questioning what has brought them in today.

The little boy, I’d guess at less than a year old, has picked something off the floor and swallowed it.

The doctor is checking him over.

She asks the questions I guess she asks every typical patient. “Is he normally fit and well?” “Any medical problems?” “Were there any problems at birth?” “Was it a normal delivery?”

His Mum answers the questions in the way I wish I could answer.

The little boy is usually fit and healthy, no medical problems and a normal delivery with no issues.

A lump forms in my throat as I feel a pang of jealousy. I’m jealous because I wish that was me. I wish I was that Mum.

No, I don’t wish that my child had swallowed something as I can only imagine the overriding fear that family must be feeling until they get the all clear that their child is okay and can go home.

But I wish that I was sat in hospital knowing what was wrong and knowing that in all likelihood, in the long term my child will probably be okay.

It may sound selfish, sometimes it’s difficult to articulate without sounding like I’m lacking in empathy.

I’m really not.

It’s just that sometimes a mist descends in front of my eyes and I can’t see beyond the pain I’m feeling as a mother of a very complex child.

Then I’m thrown back into reality.

I’m a firm believer that everybody has a right to feel however they feel about whatever situation they find themselves in.

Just because my situation feels huge to me doesn’t take away the worry that the family in the next cubicle must be going through.

I silently give myself a talking to, reminding myself I cannot possibly know how that mother is feeling as she waits to hear if her child will be alright.

Yes, my child has lots of serious issues but the chances of him ever swallowing an object he’s found on the floor are less than likely, given his high tone means he has very little control of his limbs to bring anything to his mouth.

Despite the difficulties I watch my child face on a daily basis, I’ll regularly be on hand to listen to those challenges my friends face with their children, often as they follow up with “but it’s nothing compared to what you’re going through.”

That’s where I usually step in and say “but it is not nothing, because what you’re feeling is very real and very painful to you and just because I’m facing different challenges that may look bigger, it does not mean you don’t have the right to feel angry or sad about the challenges you are facing.”

So as I sit eavesdropping into the story of the family in the next cubicle I try to tell myself I have no idea what they are going through beyond the blue curtain and I need to stop comparing our story to theirs.

But for that moment I find myself angry again.

Not at that family. I’m angry at our situation.

I’m angry that it’s my child who sustained a devastating brain injury at birth that has left him with serious lifelong problems.

I’m angry that we spend so much of our life in hospital and I’m angry that I watch my child suffer horrendously every single day with no cure or magic fixes.

I find myself once again crying and saying to myself “why me? Why my son?”

As I overhear the doctor tell the family she isn’t concerned as the child seems alert, happy and has experienced no significant side effects, therefore will more than likely pass through whatever he has swallowed naturally so they are free to leave, tears fall down my face as I know for us it’s a very different story.

We are about to embark on an inpatient admission that will involve lots of tests, questions, investigations and time away from home.

Even then I will still be taking home a child who will never be truly okay.

Eventually, I find myself stuck in a war with my own mind, feeling guilty for even comparing our situations for the truth is I have no idea what that family behind the blue curtain are going through.

They could be in a living nightmare and this evening could’ve been just a very small drop in a very large ocean.

Three more families come into the cubicle next to us who explain their children have no known previous medical issues. 

I listen intently, wondering if there may be a family who are just like us.

As the evening draws on and I listen to all of their stories, one child has had a fall and bumped their head, one is vomiting and subsequently diagnosed with a gastric virus and one is struggling to pass urine, I find those feelings of anger and sadness passing as they are all told they can go home.

I sit with the painful feelings and start to relax and find myself listening and wondering all about these families and what their stories really are.

Because the reality is none of us really know what is truly going on behind the blue curtain.

How do I advocate effectively and successfully?

It’s been a difficult few days.

Actually, it’s been a difficult few weeks and months.

When we have good days, it makes all the difficult days feel so worthwhile.

Most of the time I just sail through the bad days the best that I can in the hope that better days are around the corner.

I’m currently wondering if indeed better days are around the corner and if they are, how big that corner is.

Right now it feels huge.

I’m typing this blog from a hospital ward, exhausted, frustrated and despondent.

My son is on his 20+ admission into hospital at less than three years old.

Frustratingly I don’t even know what’s wrong. I just know he’s distressed and this distress has been increasing over the past week.

As he is non-verbal he is unable to tell me what is hurting.

As his tone in his limbs is so high he’s unable to show me where the pain is.

So with Jaxon it’s all guesswork.

Whenever I bring him into hospital, the doctors and nurses look to me for ideas.

They want me to tell them what is wrong so they can fix it.

I’m generally quite intuitive where Jaxon is concerned.

I feel I’m almost the yin to his yang.

If he’s suffering I normally know why and I can usually work out how to fix it.

This time however, he’s got me entirely perplexed.

I have ideas, oh I have plenty of ideas.

But this time I have so many ideas that it’s almost impossible to articulate to the professionals what I feel needs investigating for fear that I’m guiding them away from where the real issue is.

I’m not ashamed to admit that I feel as if I’m not able to advocate for my child in the way I would like.

I have friends who have children just like Jaxon and I am in awe when I see how they are able to get things done in ways that look almost completely effortless, I know this is not the case at all, they are genuinely very good at what they do.

I look to them often for inspiration, I want to learn how I can be more like them and in turn be a better Mother to my child.

I’m almost jealous when I see how determined they are to fight for their children.

It’s not that I’m not determined or that I won’t fight for my child, that couldn’t be further from the truth.

I just don’t always have the confidence to stand up and say this is what he needs in a way I deem to be completely effective.

It may be down to inexperience, it could be lack of confidence, I’m not really sure.

I just hope as time goes on I get better at being the voice he really needs me to be.

I feel as if I’m almost letting him down, my inability to get his medical needs met successfully one hundred percent of the time is something that I beat myself up over regularly.

I’ve never been a confident parent.

I had hoped to slide into parenthood effortlessly however in reality I tripped up over my own feet and landed face first into a world I never could’ve imagined.

To the outside world it may seem like I’ve got it all together but the reality is I really haven’t.

Not in the ways I would like at least.

Anxiety cripples me whenever we have an appointment that I’m not prepared for or when an unexpected hospital admission arises.

I worry that I won’t be heard or that I will have a battle to be taken seriously, thus delaying the urgent treatment my child needs to be better.

I’m a natural worrier so having a child like Jaxon only increases that worry tenfold.

There have been times when I’ve been able to say I’ve successfully advocated on behalf of my child and if it were not for me, he would be worse off.

But those moments are rare. Even when I know I’ve done okay as Jaxon’s Mother and his voice, I can’t always celebrate it.

Instead, I just concentrate on what I could improve on.

I’m not sure that’s necessarily a bad thing as if I aim to be better as both a parent and an advocate then that can only be a good thing.

I want to be a louder voice for my boy.

I want to get his needs met first time, every time. I want to be the strongest advocate I can be for him.

I want to say I did my best for my son and it feel like I have genuinely done enough. 

Shoe stress

Buying shoes for your child; it is something most of us would take for granted.

However, buying shoes for my child is an arduous and almost impossible task that often ends with me feeling depleted and disappointed.

My child has severe feet contractures caused largely by his increased tone that affects his entire body due to his brain injury sustained at birth.

It’s something that could have possibly been avoided, however he spent a lot of his first year in hospital therefore missed out on a great deal of important therapy.

Basically, his feet turn outwards and when manually brought into a more natural position, they won’t stay there.

He has limited movement in his legs and feet which also doesn’t help.

It leaves me once again asking what if?

There have been times I have despaired because I’ve punished myself over and over, asking myself questions that nobody could ever answer.

What if he hadn’t have developed a devastating epilepsy diagnosis at just a few months old?

What if we’d been able to better control his reflux so he’d not become so dangerously underweight when he was younger therefore not spending so much time in hospital?

What if we’d started therapies sooner? What if I’d tried harder? What if I’d done more?

Slowly but surely though, I’m finding ways to be kinder to myself.

The mum guilt has never gone away, I doubt it ever will. But I will no longer punish myself relentlessly day after day.

I’ll allow myself to ask the questions and to have those feelings then I’ll try to distract myself until they pass. 

This particular guilt though, it’s a huge one that I carry daily. What if I’d done more with his feet. Could I have prevented the contractures becoming so severe? I guess I’ll never know. It’s a tough one though. These contractures could have significant and devastating consequences to his physical development as he continues to grow.

The reality is though, I can’t change them.

The positioning of his feet is so severe that the only possible way to correct them would more than likely be surgery but with a child that’s almost guaranteed to be non-ambulatory, it would be neither in his best interests or worth the risks for this type of surgery to be carried out.

Not unless he ends up in an unbearable amount of pain.

So this leads me to where we find ourselves now.

A few months ago I begged and pleaded with our physiotherapist for help with getting some shoes that would both be comfortable for him but also reasonably easy for me to put on.

When I say reasonably easy I mean it can take me up to 20 minutes to put a regular pair of shoes on him and even then it’s evident by looking at his facial responses that he is far from comfortable or happy. 

A referral was sent to our local orthotics team and an appointment was arranged. 

I found myself being entirely listened to, heard and understood during the appointment and whilst I grasped there would be no real therapeutic benefit to a pair of shoes being specially made, this was still hugely important for me.

More-so for the social side but whilst also ensuring protection and warmth for his feet.

So with a couple of minor setbacks caused primarily by recurrent leg fractures and his appointments falling at times when he was in a leg cast, his shoes have now been made.

They are still having the final finishing touches made to them following the fitting just a short while ago but they look amazing.

Not only that, they’re easy enough for me to put on and most importantly, they don’t make him unhappy or uncomfortable.

I feel like I’ve been waiting for the moment where I can put my child in a comfortable pair of shoes for far too long but now we are almost there.

It might not seem like a big deal to most but to me it’s yet another stark reminder of how different our life looks, how many obstacles we have to face and how difficult some challenges are to overcome.

But we are getting there, one tiny step at a time.

The whirlwind of epilepsy

A couple of weeks ago, whilst Jaxon was still in bed I was carrying out the arduous early morning routine of preparing medication and feeds for the day.

He was still hooked up to his sats monitor, he usually is when I’m not in the room with him.

Then the beeping started.

I waited a few seconds before succumbing to the urge of needing to check he was okay.

What I walked into, I was neither prepared nor ready for.

Jaxon was having a tonic clonic seizure.

His epilepsy is refractory and very complex following a diagnosis of infantile spasms in May 2019 that we were never fully able to control.

But tonic clonic seizures, the type that you often see on the TV, are rare for him.

They’re the type of seizures I have to be prepared to give rescue medication for but in that moment I went into a full panic seemingly forgetting everything I needed to do.

I felt myself crumbling as I fumbled for my phone to try and film some of what was happening.

It may sound unusual but it’s handy to have a minute or two of video evidence to show his team so they know what we’re dealing with.

I had hoped once I’d stopped recording that the seizure would’ve stopped but it hadn’t.

I have roughly a five minute window before I administer rescue medication but both his sats and heart rate were dropping.

I panicked, I called my mum.

But less than one minute into the call I said I need to call an ambulance and cut the call off.

As I made the 999 call I was already prepared for what they would say. “Is the patient breathing?” followed by “is the patient awake?”  

It’s a routine I’ve gone through many times since the birth of my child so I know exactly what to expect.

“Is the patient breathing?” the operator asked me. “Yes he’s breathing, yes he’s awake but he’s having a seizure and it’s not stopping, please send an ambulance, he’s two years old, please help me, please.” I begged.

How I managed to fumble my way through the call I do not know.

I was hysterical. I thought I was going to lose my child in that moment and there would be nothing I could do about it.

As I was on the call I begged Jaxon to stop fitting, I just needed him to be okay.

I ran to the door to open it and ran straight back to him.

The operator was warm and calming but I knew she could sense the panic in my voice.

She kept telling me how well I was doing but I felt like I was failing him.

I was counting down the seconds, do I give the medication? Do I wait?

He’d have brief moments where he would seem to stop then he’d go straight back into it again.

It took all of about four minutes for the rapid response paramedic to arrive although it felt like about four years.

No sooner had he entered Jaxon’s room, he stopped seizing.

The relief crashed into me and I felt my legs begin to buckle.

I had hold of the rescue medication, ready to administer it but I was so thankful I hadn’t needed to give it.

His heart rate and sats started to correct themselves again whilst Jaxon looked at me seemingly wondering what all the fuss was about and who this stranger was in the green and yellow uniform stood over him.

Shortly after, the paramedics arrived and despite the fact the seizure had stopped, it was agreed that it would be in Jaxon’s best interests for him to be checked over in hospital.

So we headed there in the ambulance.

We were only there a couple of hours and luckily we had a chance to catch up with Jaxon’s paediatrician who made a couple of small alterations to his seizure medication.

As we arrived back home and I carried Jaxon into his room, I was instantly reminded of the fear, devastation and pure helplessness I’d felt that morning.

Once I’d safely put him down I broke down in tears.

I felt myself being consumed by grief and anxiety that this could happen again.

You can never truly prepare yourself for the moment it happens again, you just have to dig deep to find a strength you likely didn’t even know you had to simply keep going.

You keep going in the hope that it won’t be today, tomorrow or even the day after that you’re faced with a challenge so frightening that you feel so powerless to control.

’Tis the Season to be Anxious

It’s almost that time of year. The time of year that most of us either love or hate.

If you’re a summer person who loves nothing more than basking in the warm summer sunshine or enjoying late night barbecues and beer garden antics then now is the time for you to pop into hibernation for the next few months  If you’re a winter person then you’ll probably already be counting down the days until the nights draw in earlier, ready to the enjoy all the seasonal fun that winter has to offer. Halloween, bonfire night and of course (is it too early to say?) Christmas.

Then there is a whole different group of people who don’t just wish they could hibernate around this time, they wish they could wrap themselves and their whole family safely into a germ-free bubble whilst still being able to enjoy all the wonderful things this time of year has in store. They are filled with anxiety and dread about what the coming months will bring for them. That group of people are parents of children who are medically very vulnerable.

The reality is this time of year can be the difference between life or death.

It may sound extreme but so many medically complex children are lost to illness or infection around this time of year because their already compromised immune systems are simply too poorly to fight them off. It’s a grim and terrifying thought. This inevitably brings so much stress and anxiety to so many families who will do everything in their power to keep their children healthy.

It’s difficult to find a balance between keeping your child wrapped in cotton wool to ensure their safety that results in them missing out on so much fun that this time of year brings or living your life with your child as close to normal as you possibly can which brings with it a risk of frequent hospitalisations and a need for regular breathing intervention.

I wish I had the answers, of course we all know our own children better than anybody else so nobody can tell you what is best for your family and your circumstances more than you already know yourself. We know their limitations and we know what poses the greatest risk to their fragile health.

Our last two winters have been incredibly tough. The first winter Jaxon was just six weeks old and spent six weeks in hospital from November until January. His first Christmas, his first new year, it was all celebrated from the confines of a hospital cubicle. It was difficult but we tried our hardest to make the best of a bad situation. Last Christmas was marginally better however the lead up to it was somewhat difficult. He had five separate hospital admissions between October and January. He was admitted to hospital the day before Christmas Eve and was discharged on Christmas Day early in the afternoon. So I think it’s quite understandable that I’m less than excited about what this year will bring, especially given the current climate we are all finding ourselves living in.

I ask myself whether the current restrictions we are all living under will lead to a better outcome for Jaxon and all the children like him. Or will the fact he’s been so heavily shielded for over half the year have negatively impacted on his already compromised immune system.

Only time will tell.

What I do know is that whilst I’ll do whatever it takes to keep Jaxon as healthy, safe and well as I possibly can, he’s already missed out on so much and I desperately want to rectify that. I just hope that even if we can’t avoid a virus causing him issues, he will still get to spend less time inside a hospital and more time in his own surroundings. He deserves to enjoy the magic of winter and I’m cautiously optimistic that this year, despite everything going on, might be our best one yet. After all they do say third time lucky.

Feeling the Burn

This year has been tough, there’s no doubt about it. Everybody has undoubtably suffered in one way or another, that’s a given. But parents of children with complex medical or special educational needs have been starved of support in ways that this time last year, were almost unthinkable.

In all honesty, I could probably write a lengthy novel on caregiver burnout and the long-term impact of not caring for yourself whilst you’re caring for somebody else. It’s not selfish, it isn’t a luxury. Looking after yourself when somebody, especially a child, is relying heavily on you to have their basic needs met is a necessity.

I was so determined at the beginning of this pandemic to protect my child with every ounce of me that I convinced myself whilst telling others that it didn’t matter what impact it would have on my long-term health or mental wellbeing. I really didn’t care about me as we were thrown into the world of fear and unknowns. As long as my child was safe and protected from what seemed to be, a very frightening outside world then nothing else mattered. Everything else would be fine.

In protecting my child, in starving myself of all offers of support altogether, in isolating us into such a tight bubble that meant it were just me and him for months on end, I was in fact causing myself significant and debilitating distress. The consequences were that I snowballed my way right down to rock bottom. I couldn’t see what I was doing. I couldn’t see that I was on the edge of a complete burnout. I couldn’t see that I needed support. Many people around me could but I refused to see what was glaringly obvious, for all that mattered was my child.

“I’m fine”. Ah those two little words that can hide a multitude of sorrow and sadness. They became my lockdown motto. That and “I’m just tired”. I was tired. I was exhausted. But it was a kind of tiredness that sleep alone was never going to fix. I needed more than sleep. I needed time. I needed to step away from the bubble of being a carer to find myself again. In that moment I just couldn’t see it.

I was blind to the dangerous and dark situation I’d inevitably landed myself in.

I’d forgotten what it felt like to just be Jaxon’s Mummy. I was his carer, his therapist, his nurse. I wore all the different hats that his medical team wear whenever he’s in their presence. I’d forgotten how to just be Jaxon’s Mummy. I feel sad as I type that. How do you forget how to be your child’s parent? Don’t get me wrong I was doing the necessities to keep him fed, clean and looked after. Medically he never suffered, those needs were always met but I fear that during the time I’d become so consumed in protecting him, he lost his Mummy for a short while.

This is the reality of carer burnout. I genuinely believed it didn’t matter what happened to me as long as my child was protected but I couldn’t have been more wrong. By the time I realised how bad things had become I was in a full state of physical, emotional and mental exhaustion. I struggled daily with overwhelming sadness, I couldn’t sleep and then it took every scrap of energy I had to get myself out of bed in the morning. I struggled to find any joy in my life.

It felt like I was carrying the weight of a thousand universes on my shoulders as I struggled to keep myself afloat, not knowing if there would be an end in sight anytime soon. I was becoming angry. I was forgetful, my life had become a series of calendar reminders and post-it notes. The anxiety that I’d managed to battle and all but overcome many years ago, was back with a vengeance.

Not to mention I’d lost all sense of my own identity. I was feeling resentful of everybody around me. I was eating less. I found no entertainment in anything that I used to. I let all my programmes record and build up, instead sitting in silence, tearful every evening. I didn’t know who I was anymore. I’d lost all sense of self. My thoughts were irrational, and the traits of my personality disorder were seeping into my day to day life. I felt like I couldn’t talk to anybody, we’re all struggling after all. I didn’t want to be a burden so I battled through. It’s always been my way.

Asking for help has never been a strong point of mine.

Luckily on one of Jaxon’s many hospital admissions, I was taken to one side by a member of his team who has been on this journey with us since the beginning. I could see she knew how bad things were although I slapped on my “I’m fine” smile and put up a pretence that actually I really was alright. I wasn’t though. I was crumbling. She all but begged me to allow somebody, a nurse who I know well, to come into our home for a few hours each week to give me some support. It felt that it wasn’t really a request, more an order. But the reality is, I’m so stubborn and determined when I put my mind to something, I just can’t detract from it. I needed to be told.

And so my journey started to find my way out of this place, that pit at rock bottom. In the last few weeks, I’ve been able to accept more help from Jaxon’s Dad and my parents. I’ve opened my eyes to how bad things were. I’ve realised how serious things were becoming and how much I needed to change. It’s enabled me to find the courage to venture out into the big wide world once again and mix with people safely. It’s been just what I needed. It’s given me that sense of being more than just Jaxon’s Mum which ironically makes me so much more of a better Mum to him.

It’s not a weakness to ask for help. It’s a strength. It takes real bravery to ask for or accept help when it’s offered. It’s something I will continue to work on. If you’re feeling burnt out like I did then take my word for it when I say it will not get better on its own. Only you can change it, but you can’t do it alone.

The Second Anniversary

Time is passing by so quickly and now we are rapidly approaching the end of the year.

In just a few short weeks, 20th October to be exact, my son and the reason I write these blogs will turn two.

Yes, it’s his birthday first and foremost but it’s still very bittersweet for me. As soon as 20th September passes and it’s less than a month to go, I begin to fill with panic and anxiety. Instead of stressing about what gifts to buy or what celebrations I need to arrange, I find myself worrying about how I’ll navigate my way through the traumatic emotions and difficult flashbacks I’ll inevitably be faced with.

Last year I found my struggles really hit me a week before Jaxon’s birthday. What would’ve been my due date the year before and why if I’d gone into labour around that time or been induced, I might have no reason to be here writing this. Instead I would’ve been trawling the internet late at night wondering what my happy, typical, probably a bit boisterous two-year-old would love to open on the morning of his birthday.

Sadly, that’s far from my reality as Jaxon has very few interests and doesn’t interact much with toys. The ones he does interact with are special but there’s few different varieties so finding a birthday gift that he’ll like but that’ll be different from what he already owns may prove troublesome this year.

Already I can’t help but reminisce about how life was two years ago.

How excited I felt about the prospect of becoming a Mummy for the first time. How all my dreams were about to come true. “This time two years ago…” I’m saying it a lot at the moment despite the fact it’s entirely unhelpful.

As my mood dips at the thought of reliving the traumatic moments I was unexpectedly rushed to theatre for a category one caesarean section in a frantic attempt to save my child or as I was told my child was alive but had sustained a significant and severe brain injury, I have to remind myself that I was told he more than likely wouldn’t survive the night.

I have to think back to the moment we signed the DNR but he turned everything around and surprised every single member of the neonatal team by breathing unaided upon extubation. I have to remember that whilst my life is not how I imagined, I really am one of the lucky ones because we came just that close to losing him.

Even once discharged from hospital at a month old we were warned that life would be far from easy and that we would likely spend more time in hospital than at home. I’ll never forget the moment that Jaxon’s paediatrician told me he was unlikely to reach his first birthday and the intense pride I felt when we did get to celebrate that incredible and miraculous milestone.

It’s a journey like no other. But my child is amazing in his own way and for him I will do whatever it takes to manage my own feelings so that I’m able to celebrate his birthday in a way that he deserves.

It won’t be easy.

I’ll allow myself time to reflect and think about the emotions that arise the week before as his birthday approaches. I can all but guarantee I’ll shed a tear at the exact time his lifeless body entered the world and resuscitation began two years previous.

I’ll allow myself that time to cry, to grieve. But that is all. Jaxon deserves only sunshine, joy and happiness on his special day, I’m determined to make sure he gets just that.

Hopefully as the years pass it’ll get easier. I only hope years from now that the traumatic thoughts won’t be so intense, the sadness won’t completely crush me and I’ll be able to feel excitement as the little boy who wasn’t expected to get this far, celebrates yet another milestone.

Summer from Inside Four Walls, Again

This time last year, Summer was well and truly in full swing. Families were enjoying days out, making memories and having so much fun. The world was alive with festivals, family fun days and holidays. Social media was lit up with pictures of people in high spirits and precious memories being made.

I’m such a people person that normally I fully enjoy getting a glimpse of what life looks like for others. I love to see other people happy and enjoying themselves. I love looking at pictures of all the joyful activities people are getting up to away from the daily stresses that life brings for us all.

Last year however, I hated it.

I hated the punishing feeling of logging into social media, seeing friends and acquaintances seemingly going about life as if they didn’t have a care in the world, of course knowing this was more than likely not always the case. I felt angry, frustrated and upset when I saw smiling faces, new experiences and fun being had by, what felt like, everybody but us.

I was sat feeling trapped in the confines of the hospital walls with no idea when we would be free to leave and make some happy memories of our own. I tried to tell myself that at the end of each day we were another day closer to going home. I made numerous attempts to convince myself that we would be discharged in plenty of time to experience some of the delights that we were missing out on.

If the worst came to the worst, we’d always have next year I’d unconvincingly try to reassure myself. The reality is I couldn’t be sure if we’d have next year or even next month or next week. Being the parent of a child with such complex medical needs who has a limited life expectancy means that each day is precious and we cannot take anything for granted.

We did get discharged from hospital, just two weeks before the great British Summer drew to a close. It was the morning of my birthday when the doctors came in to tell us they were happy that we could go home after 13 long weeks.

We didn’t get to experience much Summer fun upon discharge as many of the family fun days had already taken place and the new school term was just around the corner. But we were home and that was enough. We’ll make up for it next year I thought.

So as we fast forward to quite possibly the strangest, craziest, in some ways saddest year that many of us will ever likely experience, once again our Summer is being spent in the same four walls. Only this time it’s not just us. Everybody has been affected. I wouldn’t say it makes the fact that we can’t be out in the big wide world enjoying all the usual Summer family fun that would normally be going on any easier, the fact that it’s not just us, but it’s slightly more manageable knowing that it won’t be in my face every time I log into social media.

I’m not seeing families go about their lives without a care in world in the same way.

We’re still shielding despite the fact the scheme has paused, so to some extent we are doing a lot less than many other families are doing. But the fact that we’re all living in these very unusual, frightening times together whilst all trying to do our part to protect our loved ones and our communities, well it makes it somewhat more bearable. We’re all in this together so to speak.

So as I sit inside the same four walls in the comfort of my own home, doing everything in my power to protect my child from the worldwide pandemic that currently has no known cure, I’ll look to next year to be third time lucky. All being well, next year will be the year that we will be able to experience all the Summer fun alongside the rest of the world with hopefully no pandemics and no hospital stays to hold us back. Next year I hope it’ll be just me and a relatively healthy child making happy memories.