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.

Sunday 20th October 2019 will mark one year since my little warrior was brought into this world with no heartbeat.

After his medical team worked on him for an unbelievable 26 minutes he was brought to life, but at a huge cost.

Jaxon was left with global brain damage after his diagnosis with grade three Hypoxic Ischemic Encephalopathy.

After a rollercoaster of a year that has included almost six months spent in hospital, numerous diagnoses and endless therapies, it’s now seemingly obvious that Jaxon will not come through his traumatic birth unscathed and whilst we’re still unsure of what the future holds, it’s clear that there are a million and one challenges that lie ahead.

So how do we cope with the first anniversary?

Of course, the first anniversary is Jaxon’s first birthday. It shouldn’t be seen as a negative, it shouldn’t fill me with dread or sadness. It should be an exciting time for all the family.

I shouldn’t be looking back to a year ago and be filled with such overwhelming emotion that I can barely function.

But I am.

Getting through the days leading up to this first anniversary is more challenging than I’d ever anticipated.

The trauma I suffered at the time that I’ve worked so hard to keep locked away in a box is starting to break free and I’m left feeling extremely vulnerable and exposed in the most normal of circumstances.

Trying to work out how best to celebrate the fact that Jaxon smashes through every single odd that was laid at his door in those first few days of life, the odds like he continues to beat and the poor prognosis that he continues to defy, is proving extremely tough.

His first birthday is his day and his alone.

It’s his special day, a day that we weren’t sure he’d even live to see so it has to be about him, but as his mother, it’s impossible to completely detach myself from those powerful and difficult emotions to enable myself to celebrate the fact that he is here, he is defying odds and he is amazing.

Jaxon is far from developing like a typical one year old.

He doesn’t really react to the world around him and it’s incredibly tough to work out what his likes and dislikes are. He doesn’t have a favourite toy or a favourite TV programme.

His smiles and cries are so few and far between that it can sometimes feel like I’m trying to read and understand a book in a completely different language.

So what do I do?

I could stay in bed, I could let the sadness consume me and I could just watch the day pass by as if it were just another normal day.

Or I could get up, do something fun, make memories. I could make sure that we embrace the fact that a year on, despite every single hurdle and challenge we’ve encountered, Jaxon is here.

It won’t be the day I’d imagined it would be this time last year before he entered the world.

It won’t be a birthday party, a cake smash photo shoot or a great deal of presents that Jaxon will take less interest in than he will the wrapping paper.

It will however be a special day. A day to celebrate. Because every day we have with Jaxon is.

I’ll probably cry. I imagine I’ll take time to reflect and remember how life a year ago was flipped on it’s head faster than I could’ve ever anticipated.

But then I’ll look at the amazing tiny human that is here in my life and I’ll be proud that he fought to stay, I’ll continue to be immensely thankful to every single doctor and nurse that worked tirelessly to save my baby and more importantly, I’ll feel incredibly lucky that I didn’t have to say goodbye before I even had the chance to properly say hello.

We live in a world that is dominated by social media. If you walk through the town centre, you’re likely to see people glued to their phones.

They’ll be on Facebook or Twitter, WhatsApp or Snapchat. There are many advantages to social media. One of these being that we are able to stay in touch with family and friends like never before, for free.

There are also many disadvantages.

Social media is in fact making us a lot less social.

Yes, we may talk more than ever over the phone or message but so many times I’ve seen groups of young people sat in a restaurant or on the bus, tapping away on their phones instead of talking to one another.

I’m guilty for it too. I rarely have my phone out of my hand.

Another disadvantage I find is that people are able to paint a picture of their perfect lives with their perfect homes, perfect jobs, perfect children, perfect partners, perfect everything.

We are able to keep track of people’s lives with just a few quick clicks. A scroll through Facebook one evening can quickly lead us to fall into a compare and despair trap.

That’s because the majority of us on social media only share the best parts; the smiles, the fun, the carefree moments, the glamour shots.

The world doesn’t see the sadness, the meltdowns, the arguments, the days when it feels like everything is going wrong.

But then we see their good days, we compare them with our bad days and it can leave us feeling sad, depressed even. Social media has the potential to make us depressed.

When somebody has a baby, most of the time they flood Facebook with pictures of their newborn.

Their partner might write a status to officially welcome their newborn to the world, after all are they even officially here if they haven’t had a Facebook introduction?

The partner may say how the mother did amazing, how they were in awe of her strength and determination to bring this precious bundle of perfection safely into the world.

There may be a picture of this innocent little human, dressed in a cute little outfit whose life is just about to begin.

The status will be inundated with comments of congratulations and compliments of how beautiful the baby is. Then a day or two later the family go home together to begin the next chapter of their life.

But what happens when things don’t go according to plan?

What happens when the baby isn’t born healthily? What if there are serious complications? Or what if the baby is born sleeping?

One and two were what happened to us. If I’d gone to hospital just an hour later, it would’ve been number three.

I, like many others had already done the big Facebook announcement with the scan pictures months earlier.

All of the 500+ people on my friends list were aware of my impending arrival.

I was receiving messages on a daily basis. “Is he here yet?” “Any sign?” “Come on baby we’re all so excited to meet you!” I was a week overdue so it was obvious his arrival was imminent.

I was updating almost every single day letting everybody know how tired I was and telling Jaxon it was time to come out, as if he was able to log on from the womb and take that as his cue to leave.

I never envisioned my first Facebook update after the birth of Jaxon would include the words “broken”, “nightmare”, “starved of oxygen”, “brain damage”, “seizures” and “bleak”.

I never imagined that the comments we would receive would include the words “heartbreaking”, “sorry”, “crying”, “gutted” and “awful”.

But that was pretty much how it went.

I wasn’t ticking all the typical social media boxes, instead I was broken hearted wishing I could be like everybody else.

Since becoming unwell with my mental health and subsequently being diagnosed with a personality disorder a number of years ago, I decided to be more open in the hope that my story could inspire others to change their lives for the better like I did.

When I set up a page to post updates about Jaxon on Facebook I decided it would be no different.

I was stepping outside of the social media box. I would show anybody who was interested what life is really like caring for a child with complex needs on a daily basis.

The ups and the downs. I find strength in numbers.

If I’m feeling less alone, my feelings are validated and I know it’s okay.

It makes things more bearable and I find it easier to carry on despite how much this journey might smash through my resilience and spirit. If I can help others to feel comforted by sharing the ups and more importantly, the downs, of our experiences then it’s so worthwhile.

So next time you’re scrolling through Facebook, feeling melancholy because it seems everybody has a fantastic life, a million times better than yours; remember that chances are they don’t.

Just like you they have bad days too. You just don’t always recognise it because you only see what they choose to show.

Take what you read on Facebook or Twitter with a pinch of salt. After all, social media only paints a tiny picture of real life.

 

By the time this blog goes live, all being well Jaxon would’ve had his surgery that he’s waiting for.

In May I made the difficult decision to have him placed on a waiting list to allow a surgeon to place a feeding tube directly into his tummy.

A gastrostomy.

I put it off for a while, Jaxon has been through so much in his short life that I didn’t want to put him through the discomfort that surgery brings.

I quickly realised that Jaxon wasn’t going to transition onto oral feeds any time soon, if at all, so surgery at some point is extremely inevitable.

For most children, the insertion of a G tube is a pretty straight forward, simple surgical procedure that takes about 20 minutes to perform and would normally only involve an overnight stay in hospital.

However Jaxon is more complex than a neurotypical baby which means the risks that surgery carries are a lot higher for somebody like him. He’s also very small for his age, at almost nine months old he weighs less than 6kg.

But the hope is that with surgery, he will tolerate his feeds a lot better and he will go on to pile on the pounds and thrive.

It will mean the NG tube will come out of his nose, his beautiful face will be free of tubes and tapes.

The irritation that Duoderm and Tegaderm cause him will be a thing of the past. It will mean we can leave hospital as he will no longer have to be monitored on overnight feeds.

It will mean he doesn’t have to deal with the discomfort that having a tube down his throat 24 hours a day brings.

It will also mean he will have to be put to sleep. It will mean he will have to have a hole put in his tummy.

It will mean he could end up on the high dependency unit if things go wrong due to his already very complex medical needs. It carries the risk of infection.

An infection that his body might not be strong enough to fight. The risks are small, but things are more likely to go wrong for a baby like Jaxon.

Since Jaxon was born I’ve had to make several difficult decisions.

The hardest one I ever had to make was the decision to sign a DNR when it wasn’t expected that he would survive coming off life support.

That was what we believed to be in his best interests at the time and I don’t regret it.

We decided after days and days by his bedside, with wires and tubes everywhere, if he wasn’t able to fight any longer that the kindest thing we could do was let him go peacefully and not prolong his suffering by resuscitating him again and putting the tube back down his throat.

Thankfully he had other ideas and almost nine months on he’s still here with us.

The decision to electively put Jaxon through surgery is the second hardest decision I’ve made since he was born.

The pressure to make the right decision can feel suffocating at times. If I don’t allow them to perform this surgery then he’s stuck with the discomfort that a nasogastric tube brings.

If I do allow them to go ahead with the gastrostomy then I’m possibly risking his life if things go wrong. It’s a pretty straight forward operation but Jaxon isn’t a straight forward baby.

Therefore the risks for him are a lot greater and that weighs heavy on my mind every single minute of the day.

I wish I didn’t have to make this decision. I wish I wasn’t filled with anxiety over impending surgery.

I wish my baby could eat orally. But he can’t and I don’t know if he ever will so this is in his best interests.

When the anxiety smashes into me I have to remind myself that I’m doing this because it’s what he needs and in the long run it will be better for him.

I’ve sat on my hospital bed and thought about cancelling the surgery. I’ve wondered whether Jaxon is too small to be going under the knife.

The anxiety gets the better of me and I start ruminating on all the reasons why this is a terrible decision that I’ve made.

Then in the next moment I switch, shake my head in anger at the fact I’ve even contemplated putting a stop to him having the NG tube removed and the anxiety goes the other way.

What if they need the HDU bed for an emergency? What if the surgery gets postponed for another month and we’re stuck in hospital again? What if for some reason it doesn’t go ahead?

It’s exhausting. The way my mind works at the best of times due to having a personality disorder is like mental torture, it’s a million times worse when I’m faced with stressful situations such as these.

It feels like we’re damned if we do and we’re damned if we don’t.

If Jaxon does have it done and it goes wrong then it doesn’t bear thinking about.

If he doesn’t have it done then we are stuck here in hospital whilst the world passes us by because Jaxon can’t go home whilst he’s having overnight NG feeds.

So as I go to sleep the evening before his surgery is scheduled to go ahead, I’ll stroke, kiss and touch his tiny tummy, I’ll hold him close to me and keep everything crossed that it will go as smoothly as it possibly can.

 

When you become the parent of a child with complex medical diagnoses, the chances are you also gain a free pass to your nearest hospital several times a year.

At least, that’s what appears to have happened in our case.

Jaxon is 263 days old. He’s spent a total of 115 days of his short life in hospital.

We’re currently in the middle of our third admission with no sign of going home. Over 40% of his life has been spent in hospital.

I brought Jaxon into hospital just over seven weeks ago due to an increase in suspicious movements and concerns that he was experiencing Infantile Spasms.

We were awaiting results of an EEG from two weeks previous and I was worried that the spasms were increasing in both frequency and duration.

Upon showing the doctors the videos I’d gathered of his movements, my concerns were validated and we were subsequently admitted. We were ushered into a cubicle and the camp bed that would be where I would sleep for the coming days was propped against the wall.

Now over seven weeks on we are still here, despite his seizures being better controlled than they were and the spasms stopping.

We’re now here for feeding issues as Jaxon has never been able to really tolerate his feeds, only I’m not sure his medical team every truly realised how bad it was.

Jaxon is NG fed and currently on a four hour on, two hour off feeding regime four times a day which means he has to be fed through the night.

Something that isn’t safe for us to do at home until he has a gastrostomy which is scheduled for this week.

I feel like I’ve almost forgotten what it’s like to live at home. What I do know though is that I miss it terribly.

I miss the home comforts I take for granted on a regular day spent at home. I miss my bed and my quilt.

The hospital blanket is rough and uncomfortable. There’s a draft that comes through the window so I get cold quickly at night time.

I miss having a cup of coffee in front of the TV. If I want a hot drink here I have to go to the parents room as they’re not allowed to be brought onto the ward.

I miss cooked food. I’ve lived on sandwiches and salads since being here. The TV goes off at 7pm until the following morning so when our visitors have left for the evening I sit in silence.

Only it’s not silent, far from it in fact.

It’s a hospital so silence doesn’t exist. Despite being in a cubicle there’s still plenty going on outside which means it’s never really quiet.

There’s always nurses chatting or machines beeping, doors opening and closing or trolleys being pushed down the corridor.

I miss lying in bed and hearing nothing but the rain fall or sitting on the sofa, still, enveloped in complete quietness.

Well meaning friends and family want to visit but I feel as if I’m constantly surrounded by people. I don’t want to upset them by saying no but sometimes I’m just too tired of talking.

I don’t have the energy to hold one more conversation. I’m always talking to people it seems and there’s new faces on the ward and in our room each and every day.

The nurses and doctors see so many patients and their families each day that it would be impossible for them to remember the names of everybody. So to every nurse and doctor I’m “Mum”. It’s like a complete loss of identity.

No longer Em, Emz or Emsky. Just Mum.

I could go home. It’s not compulsory for me to stay. But I can’t face leaving Jaxon here at night.

My anxiety is too high for that. He’s only ever cried a handful of times and at almost nine months old he still doesn’t show emotion like a typical baby.

He can’t express his happiness or distress as a neurotypical child would. But I know him better than anybody else.

I understand of course many parents circumstances simply mean they are unable to stay with their children overnight but Jaxon is my only child. I have to be with him.

I still carry a lot of guilt from his birth, I feel I owe it to him to be here if he needs me, night and day.

When somebody walks in the room I switch, I pop on the mask and appear to whoever is stood there talking to me that I’ve got it all together and I’m coping with no issues at all.

Only they didn’t walk in the room ten minutes previous when I had my head in my hands, tears streaming down my face, feeling like I’m losing my grip on reality, not knowing how I’ll get through the next hour, never mind the next day or week.

I miss normal life. I don’t even know what normal is or if I’ve ever truly experienced it. In all honesty I can’t be sure normal even exists.

But I miss my normal. Our normal. I feel completely cut off from reality.

This must be how it feels in the Big Brother house, only I have visitors and my phone.

I also don’t have hundreds of cameras watching my every movement although it sometimes feels like I am under constant surveillance.

There are days where I take everything that is said to heart, feeling like everybody is getting at me. Other days I snap at whoever crosses my path because they’ve done something slightly different to how I would or because I disagree with them.

I miss the routine. I miss driving to therapy. It’s funny, before this admission I hated all the driving I did but I saw how much benefit it was having on Jaxon’s development so I knew it was worth it.

I’m so anxious in here. I’m anxious when I go outside. Having overcome agoraphobia and dealing with other mental health difficulties years ago, I now find it a struggle when I leave the security of these four walls.

I’m losing my confidence with the big wide world and the panic surges through me on the rare occasions that I do step outside. This is because I’m not facing the phobia I overcame years ago on a daily basis anymore.

I’m just stuck in here and even though I hate it, I feel safe.

What a contradiction.

The world still spins, people continue to live their lives and then I’m stuck. I feel like I’m in a different universe, completely detached from reality. I don’t know how long for or sometimes even why.

It’s one of those things that affects you physically, mentally and emotionally.

I’ve resorted to counting the ceiling tiles because I’m so bored of playing the same games on my phone, bored of doing the same wordsearch puzzles, bored of looking at the same four walls and the same view out of the window.

I’ve counted how many full tiles there are and how many incomplete tiles. There’s dots on the tiles, I could count those too but my eyes aren’t what they used to be and I’d likely lose my place quite quickly.

There’s 19 full tiles and 24 incomplete tiles.

Possibly the worst part about being here is that I’m in the same place that Jaxon was born.

I look out of the window and I’m greeted by a reflection of the very building where life as I knew it changed forever.

The building that I can’t even face looking at, never mind setting foot into. The trauma that surrounds Jaxon’s birth is still so great that seeing the maternity building is enough to set off my heart palpitations and transport me back almost nine months in time to that night when everything changed.

I know it could be worse. It could almost always be worse.

But for the time being this is my reality. My mind-numbing, soul-destroying, exhausting, frustrating reality.

 

One of the most important things we were possibly told as we left NICU when Jaxon was a month old was that he was at risk of developing seizures at some point in his life.

Not just a little bit of a risk, there was a whopping great big likelihood that Jaxon will receive some sort of Epilepsy diagnosis somewhere down the line.

It wasn’t a definite but with his brain damage being so severe it was distinctly probable.

From that moment on I watched like a hawk, ready to deal with the situation should it arise. If one day Jaxon were to collapse, begin foaming at the mouth and start moving uncontrollably I would remain calm.

Only, the more research I did, I realised it might not be like that. If Jaxon had a seizure it likely wouldn’t present like it does in the films. It could be something as simple as a twitch or a head drop, it might be an eye roll or smacking of the lips.

The chances of it being what I’d imagined was actually quite slim.

Both a blessing and a curse.

I didn’t want to see Jaxon have a great big seizure but now the fear was different, if he does indeed have seizures they may be so subtle that I’ll miss them.

I spent hours upon hours researching. I watched videos of what different seizures looked like. I read what the symptoms were. I learnt the names. Focal, Myoclonic, Absence. I learnt that Tonic Clonic is the name for the seizures that I believed were typical Epilepsy.

Then, “Infantile Spasms” popped up. I was drawn to this as it sounded like it was something that affected babies or young children.

I read and read. It was terrifying. It was quite rare though. It did occur more frequently in children who had suffered a hypoxic injury but it was still uncommon. I read how if Infantile Spasms was to arise that it’s a medical emergency.

It can affect development and in some cases it has been known to cause children to regress back to newborn level.

We’d been through so much, surely this wouldn’t happen to us.

I thought I was just being overly anxious. I knew what to look for but I told myself it was likely I’d never need to know. If Jaxon was to develop Epilepsy it will probably be when he’s quite a bit older.

Then, a couple of months passed and I noticed Jaxon displaying some unusual movements. He has such severe reflux that I attributed it to that. But I couldn’t get the stories I’d read and the videos I’d seen relating to seizures out of my head.

Could these be seizures?” I asked Jaxon’s Daddy. He shrugged. He was as clueless as me.

Over the next few weeks I tried to capture his unusual movements on video. By the time our next appointment with the paediatrician came around, I was a nervous wreck.

I’d convinced myself Jaxon was indeed suffering with Infantile Spasms.

I showed the paediatrician the evidence I’d built up over the previous weeks but she wasn’t convinced. She explained that his movements weren’t typical IS.

I felt frustrated, I’d seen so many videos and whilst Jaxon’s movements weren’t the typical jack-knife motion that comes with a spasm they did look suspicious, there were a lot of similarities with other IS videos I’d watched and I didn’t want to rule it out without an EEG.

She agreed to arrange a 20 minute EEG if I felt that it would put my mind at rest. I wasn’t convinced it would pick anything up, what if he slept through the whole thing?

But it was all that was on the table at that moment so I took it.

I asked if anything suspicious showed what would happen next. What if it didn’t give a clear answer? She explained that if it was IS it would more than likely show within those 20 minutes as IS has a specific brain wave pattern which is a clear characteristic in diagnosing.

The EEG appointment came through a week later and we only had to wait another couple of weeks or so before our appointment date. I asked on the day if the lady who carried out the test could tell me anything. As expected, she told me that she couldn’t and we would have to wait for the results.

One week passed by, then two. The spasms were increasing in both frequency and duration. I wasn’t happy with how long it was taking to get the results. Jaxon had a particularly bad weekend and I managed to capture numerous clusters on video.

By this point I didn’t need the results from the EEG. I knew what we were dealing with, I knew it was Infantile Spasms.

First thing Monday morning I called the paediatrician’s secretary to chase the results. She explained they were still not back so I told her that the next cluster he had, I’d catch it on video and take him straight to A&E.

I couldn’t afford to wait any longer, Jaxon needed treatment, who knew what damage was being done each time he had an episode?

She agreed this was the best course of action and just a few hours later, as expected he had another 15 minute cluster.

I recorded some of it on video, packed a bag, got him in the car and drove to our local A&E department. We have open access to the children’s ward but I’ve been advised previously that if I suspect seizures go to A&E first. The nurse said she would take us up to the children’s ward and the doctor would see us there.

We were shown to a bed on the assessment unit and waited half an hour for the doctor to see us. He took one look at my video from that evening and instantly validated my concerns. He told me he believed they were Infantile Spasms and the best course of action would be to admit Jaxon and chase the results, if they came back confirming IS then treatment could be started straight away.

It took another three days to get the results, during that time he had to have several doses of Buccal Midazolam, rescue medication, as he was having over 50 spasms a day.

Prior to this the doctor spoke to the lady who carried out the EEG to ask if she remembered anything specific from that afternoon.

She told him that Hypsarrhythmia was present, the pattern that is a clear characteristic in diagnosing Infantile Spasms.

I was so angry, if she’d told me that the day we had the EEG done I wouldn’t have waited another two weeks to get the results.

We received the diagnosis that I’d feared but expected and treatment commenced straight away.

Gradually I saw the baby that I’d brought into hospital fading away due to the medication. He was sleeping all the time, he was losing his suck and swallow that he’d worked so hard to develop, his head control became non-existent, his reflux got so much worse due to the steroids and in the moments when he was awake he wasn’t really alert.

I hope these side effects are all just temporary. The medication that is being used to treat the IS can cause blindness, pain and confusion.

What a horrible double edged sword.

Either I allow him to have the medication that comes with some pretty shocking possible side effects or I leave him to continue having the spasms, likely causing irreversible and serious damage. It’s a horrific position to be in.

Three weeks on and the spasms have stopped completely, thankfully. Jaxon will be on the medication for another couple of months at least before a repeat EEG is carried out to see if the Hypsarrhythmia has gone.

He is still having other types of seizures that occur daily but nobody seems to really know what they are. They look like Focal seizures but hopefully the repeat EEG will tell us more.

So this is our journey with Epilepsy so far. I’ve got a feeling it’s going to be a long and bumpy ride, with many twists and turns.

A ride that I wish we could just get off right now.

One of the things that is said to me on a daily basis, be it by friends, family or caring strangers who follow Jaxon’s Journey is that I’m amazing or something to that effect.

The truth is I’m not amazing. I’m nothing special. I’m just a regular first time Mummy who has been thrown into the daunting world of caring for a child with a lot of medical needs.

Don’t get me wrong, it’s nice to be told that my efforts aren’t going unnoticed or that my strength and determination to fight for my child inspires others. When I’m having a down day and I receive messages such as these they lift me, they keep me going and encourage me to keep pushing forward when I feel like my energy reserves are on zero. Some of the kindest, genuine, most empathetic people follow Jaxon’s page on Facebook from around the globe and daily their comments fill me with confidence, love and hope, especially when these things feel in short supply. I wear my heart on my sleeve, I’m an open book in the hope that sharing our story and raising awareness may reach somebody in need and allow them to feel a little less alone on whatever journey they’re on. I’m a fixer, I like to help people. I’ve always been the same.

But that doesn’t make me amazing.

It’s a daily battle to access the services Jaxon needs, it’s a never ending cycle of appointments, phone calls, emails, letters and research. It’s tiring, it’s monotonous and the future is pretty terrifying from where I’m sitting. But no more than we asked to be dealt this hand, Jaxon didn’t ask to be born, he didn’t ask to be brought into this world with a handful of complex diagnoses that come with a truck load of uncomfortable symptoms.

On the outside it might seem like I totally have it together and I’m coping with every single challenge that is thrown our way. But on the inside it’s very different. Behind closed doors I scream and shout, I snap at those closest to me, I push people away. Many a time I’ve collapsed in a heap, the weight of my emotions too much to carry and I break down uncontrollably to the point I can barely catch my breath.

Then eventually, I pick myself up, dust myself off, take one look at Jaxon and carry on because he needs me.

But that doesn’t make me amazing.

I battle with constant inner turmoil. I ask the questions “why me?” “why him?” “what if?” “what did I do that was so wrong?” Not because I’m anything special that makes me immune to the pain that the world of caring for a special needs child has brought me. Not because I’m anymore deserving of a child that doesn’t have complex needs. But because Jaxon doesn’t deserve this. He’s a tiny baby who deserves a shot at a normal, pain free life just like every brand new baby.

I will always feel some level of guilt for his hypoxic injury. I will always wish I did something sooner to prevent the vast damage to his brain. I will always wish I wasn’t talked out of being induced by a doctor who was supposed to know best. I will always wish that I hadn’t talked myself out of going to the hospital earlier on the day he was born. I will always wish that the fear of coming across as an overly anxious first time Mum didn’t invade my thoughts hours before and prevent me for making the call to the hospital hours sooner.

That guilt will always be a part of the driving force behind my determination to do everything in my power to ensure Jaxon has the best life possible and that he reaches his full potential. I will give every inch of my energy, my love, my everything to give my son the best chance of a fulfilled, happy life.

But that doesn’t make me amazing.

I’m just me. A Mummy trying to do her best for her son.

I see where the comments come from, I see why people do tell me that I’m amazing, that they’re inspired by me or that they’re proud of me. I see it because when I read blogs by other special needs parents I think exactly the same about them. I read their stories and I think “wow, you’re amazing. How do you do that?”

I read stories on my Facebook timeline by Mummies and Daddies of neurotypical children. I see their hardships, their rants and the way they deal with their challenges and overcome them. I read in awe as I think to myself “amazing”.

Me fighting for, caring for and loving my son doesn’t make me amazing. Everybody is fighting a battle behind closed doors, no matter how big or small. Everybody is facing or has had struggles in their lives. Nobody is immune to pain and suffering. The tough times don’t discriminate. I’m no different.

The truth is we’re all just trying to do the best for ourselves, our families, our children, our friends, those in our lives who we love.

If that makes me amazing, then you’re amazing too!

First of all, 15 years from now you’ll despise your name, you don’t like it much now I know but by then you’ll rarely introduce yourself as Emma, unless you absolutely have to in some sort of official capacity. It’ll either be Em, Emz or Emsky.

You’ve had a rough time so far I know but believe me your biggest challenges are yet to come.

I know you’ve had a real issue with school, I know you weren’t being awkward not wanting to be there.

You had a deep-rooted fear of school, of authority, of feeling trapped in a situation you couldn’t easily remove yourself from. Believe me, you’ll explore those issues later on and you’ll learn a lot about yourself.

Don’t be too hard on yourself; you survived those early years and you’re now trying to figure out what you want to do with your life.

Don’t get too excited though, five years from now life is going to hit a major bump in the road, it’s going to completely derail you off this path that you think you’re heading.

You want to have a nice house and car, be married and have had your first child by the time you’re 25?

Your dream life is going to remain just that; a dream.

But guess what? In 15 years time, you’ll still be here, you’ll be surviving and at times thriving.

You’ll be fighting a daily battle with your mental health, but more importantly, you’ll be fighting for your son.

Yes, you heard me correctly. You’re going to have a son.

It’s not going to be when you wanted to and it’s definitely not going to be how you’re imagining it to be right now. But you’re going to create the most amazing, beautiful, resilient little human.

When you first lay eyes on him you’ll realise that true love is real.

Let’s go back, or in this case, forward in time.

So you’ll go to college. You won’t like it though, remember the whole not liking school/authority thing? Yeah, that’s still there.

Give it a couple of months and you’ll have given it up. You’ll go to General Physics instead (don’t worry it’s nothing to do with science), it’s a training provider who offers additional support for those who maybe left high school without good grades or in your case, don’t have the confidence to go out into the big wide world and get a job.

They’ll put you in a six-week placement, only you being you will stay there for almost 18 months. They’ll help you get a permanent full-time paid job though and for a while, you’ll be happy.

You’ll spend the last couple of your teenage years acting a little recklessly.

Not too recklessly though, you won’t get into drugs or get arrested. You’ll just make some unusual choices and then look back on your life wondering what on Earth you were thinking. Don’t worry though, it happens to the best of us.

You’ll unexpectedly settle down into a relationship a lot earlier than you’re imagining right now.

Look around your close circle of friends. Yes, really. I know it’s hard to believe that you’d settle down in a romantic relationship with any of your chums but it happens.

I’ll leave that one with you though to figure out who the chosen one will be.

You’ll suffer one of your biggest losses just three months after you turn 21 years old. This will be the beginning of your, shall we say, new life?

I say new because 15 years from now you’ll be a very different person from the young lady you are now.

Somebody will even tell you that the events mentioned later in this letter will change you forever.

He will tell you that you won’t ever be the same again and he will be right.

So here is where things start to go wrong.

CJ, your cat, your best friend, your ever faithful companion since you were nine years old. I hate to tell you this but she won’t be around forever.

You don’t need me to tell you now that when the time comes for her to leave you’re going to be heartbroken. I wish I could tell you it’ll be a peaceful passing but I can’t.

She’ll leave you suddenly and unexpectedly. She’ll go without you having a chance to say goodbye.

It won’t be her time to go, she’ll be taken from you by a careless driver. You’ll cry more tears than you’ve ever cried at that point in your life.

You’ll wonder how you’ll ever recover from the pain, the grief of losing this beautiful creature.

You’ll never come to terms with it but you’ll adjust. People will tell you to get over it, she was “just a cat” – ignore them. They don’t understand.

You’ll find a way through the darkness and she won’t haunt your thoughts on a daily basis. You’ll be able to look back and think of the happier times.

You’ll smile; a tear may silently fall when you look at her picture, especially on her anniversary but you will be okay.

Now, I need you to listen to me.

Remember earlier when I mentioned the major bump in the road? Well, I say a bump, it’s more of a full on pile-up.

It’s going to hit you so hard that there’ll be days where you feel like you can no longer go on.

You’ll be plagued by suicidal thoughts and self-harm ideation on a daily basis.

You’ll spend a lot of time in the hospital. You’ll be left with scars. Physical scars that will be there for the world to see.

There will also be a million deep-rooted emotional scars that only the few who you choose to show will see.

You’ll feel as though your life is crumbling like everything is slipping away and you’re powerless to stop it.

You will lose your job. You will develop agoraphobia. You will spend weeks in a mental health unit.

You will spend six months at home without once stepping outside the front door. Following this, you won’t leave the house alone for three years.

You’ll be diagnosed with borderline personality disorder. You will become so fearful of public transport it will take you almost four years to get back on a bus after a huge panic attack affects you greatly.

You will watch friends who were once so close to you walk out of your life as you’re incapable of stopping them.

You will struggle to maintain relationships with your family including your significant other as well as your closest friends.

All within less than five years.

Are you scared yet?

Don’t be. Just bear with me.

You’ll discover strength in yourself that you never thought possible. You will find a way through the dark days with the help of your friends and family.

One thing I need you to realise and remember; those struggles, they will shape you into somebody with so much empathy and love for others.

Sometimes you’ll feel like your whole world is crumbling and you cannot do anything to stop it, but you will push on regardless because you are stronger than you believe.

You’ll go into therapy and it will bring you back from the edge. You will meet others who are Just. Like. You.

You won’t always feel so alone, you won’t always be wondering if you belong.

You will find your place and you will own it. This one particular therapy will save your life. You’ll go from strength to strength and you’ll use your heartache and experiences to help others.

You’ll look back and wonder how you ever made it through. You’ll smile with pride. You will realise you did good. You’ll see that you worked hard to get through it, even when it all seemed too difficult.

You will become free of self-harm and you will find the light at the end of the tunnel you thought for so long had gone out.

I promise.

Life will be nice for a while. I say nice because it will be a rollercoaster, some days will be amazing (like when you finally get to meet Noel Sullivan!) Some will be so dark (including losing one of your closest friends to suicide.)

You will adjust and you’ll learn to plod on regardless. You’ll find your own normal and you’ll accept your flaws as being a part of who you are. You’ll be settled in life.

At least until 2018.

Now, I don’t really want to write this to you, but you need to know what the future has it store.

At least until a quarter of the way through 2019, I can’t go much further than that at this moment in time. Sorry.

As I said earlier you’re going to become a mum to an amazing little boy.

Calm down, I know the excitement will be tearing through you at this moment in time because it’s all you’ve wanted since forever, but you need to hear me out.

It’s going to be so hard, harder than you ever imagined. Not because of dirty nappies or sleepless nights, you’ll learn to cope with them quite quickly.

Your baby is going to be born with complex needs. It’s going to be your biggest test to date.

It’s going to test every part of you and then some. Your physical and emotional well-being will be pushed beyond their limits. You will feel a huge range of emotions, some you will never have felt before your baby was born.

But your determination and strength will shine through as you face each day, each challenge, each fight head-on with your baby.

You’ll be his voice, his advocate, his nurse, his therapist, his teacher, but never ever forget amongst all of that, you will first and foremost, be his mum.

He will love you, even on the days when you feel so unloveable.

It’ll be hard but try to worry less and smile more. You will have what you always wanted albeit not how you would’ve hoped or imagined. But you will realise further down the line how lucky you are that he is here.

He’s going to be resilient, just like his mummy. Remember, you will be his world and he needs you.

So you will have to keep pushing through the difficult times, no matter how impossible a situation seems, I can almost guarantee things won’t turn out as bad as you imagine.

Stay strong, stand tall and proud, smile plenty, love always, never become complacent, accept change.

Forgive, listen, learn, be curious, be grateful, be patient, be kind. Don’t have regrets, never let anybody make you feel that you are not good enough, remember you’re not alone and more important than anything else;

Never give up.

From older, not-necessarily-wiser Emsky x