If there was a way you could take a picture of the mind of a parent whose child has suffered a hypoxic ischemic brain injury, I imagine it would be quite a remarkably fascinating image.

There would be so much colour that represents hope in amongst so much darkness that represents the truly heartbreaking realities HIE parents have to deal with. It would be a picture of what I can only describe as beautiful chaos.

There are a million ways I could describe my life since becoming a parent and consequently being thrown into the devastating world of caring for a child with a severe brain injury. Beautifully chaotic sums it up nicely, for the purpose of this blog at least.

It’s beautiful because I am Mummy the most amazing little human who has defied so many odds during his short but incredibly tough life. It’s beautiful because I could’ve lost my child before I even had the chance to get to know him yet he’s still here and I know I’m one of the lucky ones. It’s beautiful because I’ve learnt the real meaning of hope. It’s beautiful because I don’t miss a thing, every single tiny thing my child achieves is a total celebration.

It’s chaotic because I am Mummy to a child with significantly complex medical needs. It’s chaotic because whilst my child needs everything that his peers need, he also needs so much more. It’s chaotic because my child will never hit the big milestones and I have to deal with my overwhelming feelings of sadness of everything we have lost. It’s chaotic because my child will never be the little boy I imagined when I was carrying him and that in turn has resulted in me dealing with a very complex type of grief.

It’s somewhere between anticipatory grief and traumatic grief but with plenty of other different types of grief thrown in for good measure.

With a child who is so severely affected, there comes with it an extremely shortened life expectancy. For us initially, we were told around a year. Now at almost two years old it’s predicted that my child won’t live into adulthood.

With respiratory issues and Epilepsy, there’s a risk that every single day could be his last. Each day feels like another day where I’m walking on eggshells, not sure where I’ll find myself at the end of the day. No parent should have to bury their child and not many parents live their lives expecting that one day this may be their reality. But for me it is.

I feel like I’m currently in a cycle of grief that is so complex it’s almost impossible to articulate it in a way that even the most intensely trained counsellor would be able to understand. Every single day I grieve though. I know that much. As such I spend quite a chunk of my life feeling somewhat anxious and unhappy.

A few weeks ago we had a ramp installed outside our flat. It’s been in the pipeline for a while and I didn’t think much of it. When the workmen came to start the groundwork I felt sad. It was an overwhelming sadness that I couldn’t have predicted. It crippled me for days and I sat alone at home, crying.

I felt like I’d been smashed in the face with a very real picture of how life will look and since then, I’ve struggled to move forward. It took me a while to realise that those feelings I was experiencing, they were feelings of intense grief. Grief for the life we expected when I was pregnant. Grief for the life my child should be experiencing. Grief for the child he should’ve been. Grief for the child he will never be.

This is a lifelong journey that we are on.

I know I’ll have so very many more moments of sadness, anger and grief. Alongside those moments though, there will be glimmers of hope, happiness and reasons to smile.

Hypoxic Ischemic Encephalopathy is something that you’ve probably never heard of unless it’s very sadly happened to somebody you know. It’s so scarcely known about considering the devastation and heartache it brings to families around the world.

There is a lot more known about the conditions that can arise as a result of HIE such as Cerebral Palsy, Epilepsy and Global Developmental Delay to name but a few. Yet HIE remains relatively unspoken about.

I’m a firm believer that knowledge is power, awareness is key and the more we talk and educate, a better place the world will be. I’ll never stop talking about HIE, the incredible highs, the devastating lows and everything in between. If talking about my experiences helps just one person feel a little less alone on their journey, then it’s all been worthwhile.

I’ve learnt an awful lot on my parenting journey so far. I’ve learnt skills I thought only nurses needed, I’ve learnt more medical terminology than I ever imagined my brain could absorb and I’ve learnt what it really means to be strong.

Every day brings new challenges. Some big. Some small.

I find myself learning new things all the time. Every week brings new realisations. Some weeks bring sorrow. Many weeks bring hope. Occasionally some days bring joy.

My most recent realisation and one that has hit me particularly hard is the number of times I find myself apologising to my child on a daily basis. To hazard a guess I’d say I apologise to him at least 30 times per day. Imagine apologising to your child more times than you tell them “I love you”. I apologise for so much that happens to him that is completely out of my control. I apologise for the discomfort he experiences daily, even if some of it is to aid his relief.

I apologise when I have to suction secretions from his nose and mouth for the fifth time that morning. I apologise when I’m stretching his stiff and dystonic limbs in order to try and bring them into a more natural position, if only for a moment. I apologise when he suffers his 20th seizure that day and I’m completely powerless to stop them. I apologise for changing his nappy as the position I have to hold him in to clean him properly brings him temporary discomfort. I apologise as I place him into his chair, car seat or pram as there is a limited range of movement in his hips and it is uncomfortable for him when I sit him down. I apologise as I strap him into his shower seat as his trunk and head control is almost non-existent meaning he needs to be fully supported during the simplest of tasks.

The word sorry seems to roll off my tongue more than any other word in the English language when I’m talking to my child. I imagine I probably don’t even realise I’m doing it half the time. Occasionally though, there will be times that tears will be rolling down my face as I stand by a distressed Jaxon, apologising profusely for his ongoing battles.

I’ll pop on my medical hat and run through the long list of what it could be this time causing him to be so unhappy, feeling like a failure as one more I can do nothing but apologise again as I wait for him to become so exhausted he falls asleep. In that moment he has relief from the pain and I can relax, I’ll bend down to him and whisper “I’m sorry” into his ear as he sleeps peacefully.

When I first met Jaxon at eight hours old when he was wheeled into my side room on the postnatal ward before being transferred to another hospital, the first words I said to him were I’m sorry. I was so terribly sorry for the fact he’d had to endure a prolonged resuscitation and that his prognosis in that moment was terribly bleak.

I was sorry that his start in life was worlds away from the one I’d dreamed of when I was carrying him for over nine months. I was sorry that at only a few hours old, he’d suffered more than many suffer in an entire lifetime. 

There is nothing worse than knowing your child endures extreme pain every single day of their life. It’s my heart-breaking reality knowing that, as his mum, I am totally incapable of making it all better for him.

Possibly the most difficult thing to accept is that Jaxon has very little understanding of what I’m saying to him. Partly due to his age but most probably largely due to his brain injury. He doesn’t understand that when I’m stretching his joints it’s for his benefit, to prevent contractures and further discomfort later on in his life.

He doesn’t understand that the pain he suffers on a daily basis I can’t do anything to prevent. He doesn’t understand that we are trying so desperately hard to successfully treat and fully alleviate the seizures he has to cope with every single day.

I can only hope that he knows how deeply loved he is by everybody around him, none more so than me. I hope he is able to feel comforted when I’m telling him how incredibly proud of him, I am and how much I adore him. I hope one day he’ll understand that if I was able to switch places with him, to give him a life that he fully deserves and all the lovely things the world has to offer, that I’d do it in a heartbeat.

A year has just passed since I sat in a hospital cubicle as a doctor came in to confirm my worst fears. Our latest battle we were faced with was a diagnosis of infantile spasms. A battle that back then, I couldn’t have predicted the ferocity of. A battle that would be so resistant to the treatment that works so well for the majority of those affected, Jaxon would later be dealing with over 200 seizures a day.

He never does things the easy way.

Initially I’d hoped the treatment offered would completely eliminate all signs of epilepsy and we could go back to how things were. The small steps in the right direction, the progress forward, the tiny glimmers of hope as we watched and wondered how Jaxon would develop after a devastating brain injury at birth left the doctors telling us that he would be so severely affected his life would be full of uncertainty, could return. At first it did. But it was only a few weeks before, shortly after Jaxon’s gastrostomy surgery, I sat in a hospital cubicle crying once again because I knew what I was seeing. I didn’t need an EEG to confirm what I already knew.

Still, I begged for a repeat EEG to be carried out. A neurologist came to speak with us. I told him simply that I believed Jaxon’s seizures were back with a vengeance. An EEG was requested and just days later my fears were confirmed. His medication was increased and once again, all we could do was wait and see. The story of my life.

The improvements were barely noticeable. So once again the medication was nudged up to the highest dose. Still no change. Each time I’d hope for a miracle, each time I was left entirely frustrated and disappointed. There was little I could do but try to remain hopeful.

Then less than two weeks after our discharge from a 13-week hospital admission epilepsy struck again. In the form of a tonic clonic seizure. I struggled to keep my composure as Jaxon’s body shook at 2am. My fingers barely able to unlock my phone to dial for an ambulance. My voice was noticeably shaky as I tried to explain to the operator what I could see happening whilst also trying to cram in a condensed version of Jaxon’s back story. The ambulance came, rescue medication was given, and we were taken to hospital. I showed the doctors the videos, but they couldn’t be sure if it was a seizure or dystonia. They said if it was a seizure it was likely focal rather than a tonic clinic.

Slight relief.

We were sent home with a new medication to start. I was terrified and hoped I’d never have to deal with anything like that again.

But I did. Less than three months later the same thing happened. It was just me and Jaxon. Trying to keep my hand steady enough to dial 999, I put the operator on loudspeaker as I told them that my son was having a seizure. I knew this time what I was seeing. This wasn’t dystonia. He was seizing. His eyes were deviating upwards, his lips were twitching, he wasn’t responsive. I managed to capture some of the episode on video.

I was crying as I opened the door to the paramedics. They rushed in and gave rectal diazepam. He became quite tonic but seemed to come out of the seizure. Then he started again. We were taken to resus at hospital where they tried to stabilise him. Nothing was working. He’d been given two lots of diazepam and paraldehyde. The doctors told me he was still seizing and given how unstable his veins are due to how much they’ve been used, they needed to gain IO access. Intraosseous is where they gain access to give medication directly into the bone by drilling. I’ve seen some horrendous things happen to Jaxon in his short life, things I wouldn’t wish on my worst enemy but watching a doctor drill into my one-year olds knee is right up there.

I cried as they did it and I cry as I think about it now. As they gained the access, I pushed my way through the team of doctors, I could see he was no longer in a seizure. He was tonic yes, but that’s not all too uncommon for Jaxon, especially when he’s in pain. I begged them to listen to me as through the tears I tried to explain that Jaxon was no longer seizing. One of the nurses quietened the rest of the team as I explained he has increased tone, and this was normal. The room suddenly seemed calmer and there were discussions of us being moved to a ward.

A few days later we were sent home with a plan for rescue medication if it ever happened again. Another repeat EEG was also ordered to try and determine what was going on.

Just a couple of weeks later the EEG was carried out. I recognised the person doing it from our first EEG. She told me the first time around she couldn’t tell me anything about what she was seeing, and I didn’t question her. This time around I asked her if she could at least confirm if hypsarrhythmia (the chaotic brainwave pattern associated with infantile spasms) was still present. I told her I’d pretty much ate, slept and breathed IS for the previous six months and that was all I wanted to know. Maybe she sensed the desperation in my voice or maybe she felt sorry for me, I don’t know. But within 30 seconds of the test beginning, she looked at me with real sorrow as she confirmed it was still there. I nodded, held back the tears as I gripped Jaxon so tightly, wishing somebody had the answers to help him.

In the new year we weaned off one medication that clearly wasn’t working and started a new one to try once again to bring his seizures under control. This too was unsuccessful. We were awaiting the go ahead to start the ketogenic diet, but Jaxon’s consultant felt it was best we wait until his reflux is fully controlled.

A few weeks ago, we started yet another new medication. His fourth seizure medication we would try. The improvements so far have been the best I’ve seen. I’m reluctant to become too hopeful as I’ve seen an initial improvement before with new medications followed by a swift punch to the gut as weeks later the seizures return with full force.

Epilepsy is heart-breaking.

It takes away so much, which is another difficult and devastating blow when you feel like you’ve already been robbed of so much. There’s nothing worse than watching your child have clusters of seizures day in, day out and feel utterly powerless to stop it.

I hope with every part of me that one day there will be a cure for all types of epilepsy, even the most intractable types. Until then, I’ll hold onto what little hope I have left that the next treatment we try will be the miracle we’ve been waiting so long for.

 

A few days ago, I was mindlessly scrolling through old videos and pictures on my phone whilst lay in bed, struggling to sleep after another day of the same routine.

I stumbled across a video of a three-month-old Jaxon. He was lay on his front, pushing himself up and holding his head up with a confidence that I don’t ever remember him having. I continued to scroll. There was another video of him doing much the same. Then another, only this time he was clearly moving his legs in a way that he was trying to gain some momentum to roll himself over.

Until that moment I hadn’t realised quite how much Jaxon has regressed. It’s been a gradual decline and I’ve been so busy with life that I’ve not noticed what is staring me right in the face. Jaxon’s development hasn’t progressed, if anything it has gone backwards.

I spent the next 90 minutes or so in floods of tears. I watched the videos over and over, like some sort of torturous routine that I couldn’t detract myself from. In that moment I was punishing myself and I don’t really know why.

“Where have I gone wrong?”

I was so angry with myself. “I should’ve tried harder. I should’ve done more” these were the thoughts that were racing through my mind that night.

“I’m not good enough” that’s right, I felt that I was not good enough to be Jaxon’s Mum. In all honesty if you were to ask me if I feel good enough now, I’d likely still tell you that no, I’m probably not good enough for him. My confidence is at an all-time low and I spend a lot of my time thinking I’m out of my depth.

I’m only too aware that I won’t be the only special needs parent, or even parent with those thoughts.

The reality is Jaxon has intractable epilepsy. He was diagnosed with infantile spasms a year ago and we never managed to gain control of them. He is now on three medications to try and get his seizures under control. Yes, that’s correct – THREE. Add into the mix he has a severe brain injury from birth that causes him to have extremely chaotic and disorganised brainwaves, there’s probably a lot more epileptic activity going on that I’m not even aware of. He has a movement disorder. He has ongoing feeding issues that we’re only just starting to get on top of. He has metabolic bone disease. He has a visual impairment.

If I’m honest with myself, I’m all too aware that all of these things were totally out of my control, I couldn’t have possibly done any more than I have to try and get these issues resolved. They’re also likely to be the main reasons that Jaxon’s development has regressed.

So why am I questioning if I am enough?

Why am I having these fleeting moments telling myself that I am not enough, not even close? Why am I punishing myself? Why am I spending hours upon hours torturing myself?

I’m not sure. Maybe it’s part of the ongoing process of coming to terms with how life looks now compared to what I imagined almost two years ago. It’s a journey and there’s no real destination in sight, we just navigate our way through a field of unknowns, looking for ways to resolve challenges however we can.

So how did I overcome these feelings? The reality is I haven’t. I’m still battling an unhelpful and damaging daily internal dialogue. I’m still feeling that I should’ve done more when Jaxon was younger. There’s little I can do to get away from these feelings. I thought to myself, if I’m struggling with thoughts like these then it’s possible those closest to me are struggling too. Not with the same feelings of course, but with their own internal dialogue throwing unhelpful thoughts at them. I quickly realised that those in my life are probably quietly waging wars with their own minds, their own insecurities and their own troubles.

I’m a fixer. I always have been. I like to make people smile.

So, I did a spot of online shopping and sent some surprise gifts to those closest to me, particularly those who have helped to carry me through the last very difficult few months. Not only would it hopefully help make them smile, it made me feel good. It distracted me from that unhelpful internal voice that I am desperate to remove yet that I’m struggling to even quieten at this moment in time.

As the thank yous started rolling in over the next few days, little did those who were thanking me realise that I was so much more thankful to them than I could ever express. Thankful for them listening to me. Thankful for their reassurance, their friendship, their kindness, their love. Thankful for them standing by me and just being the people that they are. For a moment I was able to make them smile with a small random act of kindness but that is nothing in comparison for what they have done and continue to do for me.

We’re over two thirds of the way through our anticipated 12 weeks of shielding. I don’t doubt it will have to be extended beyond the end of June for us, as the virus still rips through communities without prejudice.

Things are improving albeit very slowly. The world is still turning but the life we once knew has been ripped away from us and replaced with the fear that being too close to somebody in the street could potentially infect us with a deadly virus that at present has no known treatment, vaccine or cure.

I don’t know about you but whilst I’ve found this period of isolation from the big wide world and those that I love extremely challenging, exhausting and lonely, it’s not been as bad as it could’ve been. Thankfully I’ve managed to protect my son throughout this terrifying time, my family and those closest to me have luckily not become poorly and maybe the biggest relief of all is that I or nobody close to me has suffered the loss of a loved one due to this deadly virus.

I’ve enjoyed the time I’ve spent with Jaxon.

It’s tested me beyond my limits on more occasions than I’d care to admit, but there have been many days I’ve woken up, thankful that the only thing I need to worry about that day is keeping him happy. I’ve not had to run around getting us both ready, tackling the rush hour traffic to get us to an appointment on time. I’ve been able to sit in the moment and just enjoy being here with him.

Don’t get me wrong, I’ve missed some of his appointments and I’ve worried about the long-term effects missing so much therapy will have on him. I’ve struggled without the team of fantastic people that usually surround us, giving us endless support. I’ve missed the respite I receive from Jaxon’s dad and my parents as I made the decision in the beginning to go it alone so to protect him as best as I possibly could. I’ve risked my own physical and mental health to keep Jaxon as safe and well as possible. I, like so many others all over the country have made incredible sacrifices throughout this difficult period.

So, as the world begins to recover, as the lockdown measures begin to ease, as shops and businesses start to reopen and society attempts to return to how it once was, I find myself asking what will the future look like?

I’d love to think that a year from now a vaccine will have been found and this will all be one great big nightmare that has been retired to the history books. We’ll still talk about it. “Remember this time last year when we couldn’t leave the house because of Coronavirus?” I imagine we’ll talk about it for years and years to come. But the world will be safe. People will be safe. At least safer than they have been for the past three months. We’ll be able to hug our friends and family without the fear that we could unknowingly make them so poorly they could end up in intensive care or worse. We won’t have to worry if somebody brushes past us in the street or leans over us in the supermarket. We won’t have to wear masks just to take a trip to the shop or get on public transport.

I’m generally quite a positive person.

I am a firm believer that this period in our lives will change us, humanity, for the better. We will value the little things and realise that the material things don’t matter half as much as we once believed they did. We will cherish the people we have in our lives, we’ll admire the nature we’re surrounded by on a much deeper level. We’ll have a greater appreciation for the things we once took for granted.

A global pandemic that has caused the world to close its doors for months is quite possibly the biggest challenge that collectively, we’ll ever face in our lifetime. At least I hope so anyway. The world probably won’t look the way we remember for a very, very, long time.

But the human race is strong, determined and stoic. We are resilient and we will adapt to the new normal, whatever that may look like, as the world opens its doors once again.

Now more than ever in these terrifying and uncertain times, I need to keep my child well to avoid a hospital admission. When that same child has had seven inpatient stays in less than four months, the odds are stacked heavily against us.

The last couple of weeks have been rough to say the least, caused primarily by Jaxon being full of a cold leading to intermittent desaturations throughout the night. He’s also teething and struggling with reflux, we’re awaiting a GJ tube placement to enable us to feed him directly into his bowel and hopefully alleviate the relentless sickness we deal with on a daily basis. Add all these together and it’s not an ideal combination for settled days and restful nights.

I’m caring for Jaxon entirely alone at the moment to protect him as best I can. The sleepless nights and none-stop mumming during the day are taking their toll and I’m worn down. I’m trying to keep my chin up, I’m reminding myself regularly that this isn’t forever and that life will return to some sort of normality once again. I find by telling myself that I’m not dealing with this alone, the whole world is going through it too, helps marginally.

But doing it alone, well it’s hard

The time we spend at home is filled with fear and anxiety at the best of times. No sooner as Jaxon is discharged, I’m waiting for the next admission. He’s not a medically well child and unfortunately regular hospital admissions are just a big part of our lives. 

That fear is now magnified on an exponential scale. I’ve had full blown panic attacks, cried every single day and become so stressed I can barely even manage to eat due to the paralysing fear that Jaxon may end up back in hospital before this crisis is over.

I struggle to manage the fear on a normal day but I’m able to keep us busy, introduce Jaxon to new experiences and spend time with people we love to enable me to push through. I try ever so hard to enjoy the time we have at home because I know I can blink and find that we are back in hospital once again. Keeping us busy at the moment isn’t as easy and my options, as with everybody else’s are limited.

But I have to try and carry on.

I can’t let myself become so consumed by fear to the point I’m no longer able to parent the child I love so deeply.

That fear became a reality on Thursday last week when after night after night of dealing with an unsettled Jaxon, I was advised to take him up to hospital to have him checked over.

I’m unable to put into words how I felt driving up to the place where I knew there would be a chance, no matter how small, that one or both of us could come out worse than when we went in.

I choked back the tears as I walked straight up to the ward. I was given a mask to wear as I headed with Jaxon to the assessment ward. The silence was deafening and the reality of the situation we’re facing sunk in.

He was given the once over by the doctor and after what felt like the longest four hours in an incredibly long time, thankfully we were given the green light to go home.

As I walked out of the hospital, my mask still on my face and Jaxon’s muslin cloth draped over him slightly in an attempt to protect him, I found myself holding my breath, almost running down the corridor to get through the doors. I drove home, I felt numb. Those four hours had run me into the ground. I wanted to get home and lock us away from the world again.

I realised once home that despite the fact that the fear of Jaxon being admitted to hospital in the future will never leave me. When all this is over, that fear won’t ever feel as great as it does in these current times, it won’t ever crush me like it did on Thursday.

And for that it’s highly likely I will feel just an ounce of gratitude.

I know there will be many parents out there who are caring for children who are medically compromised in one way or another. I know they too will be feeling that intense and debilitating fear that I feel. To each and every one of you, I so desperately hope you can all get through the next few weeks and months without having to see the inside of a hospital.

It’s day 19277492 of complete isolation from the big wide world. Yes, that’s a slight exaggeration I know, but when you’re parenting a child with complex needs and your entire support system has been ripped away from you, that is pretty much how it feels.

Still, if I take away the fact that I’m surviving on roughly 1-4 hours’ sleep per night, I’m getting very little time during the day to do anything for myself and I’m absolutely run ragged with a million and one things on my to-do list, I’m actually doing okay.

More importantly, I’m enjoying a large chunk of the time I’m getting to spend with my child with no distractions, no appointments to attend and nowhere to go. Don’t get me wrong, there are plenty of moments in the day I’m not finding enjoyment in such as cleaning sick, dirty nappies and teething troubles. But overall, I’m finding time to smile just by being with my boy, here in the moment. The little boy who has no idea why the world has just stopped.

Needless to say, it’s hard for all of us. For the most part we’re no longer living, we’re just existing. We can’t go to the shops, we can’t go out for lunch, we can’t take our children to experience new places. Schools are closed. Lots of people can’t go to work. All of a sudden, the outside world is a threat. Social interaction that many humans thrive on is now to be avoided to eliminate risk. Life as we knew it three months ago has ceased.

The world is different, frightening and full of unknowns.

Perhaps I’m coping better because I’ve already had ample practise at isolating. Jaxon is 18 months old and we’ve spent over 200 days of that time in hospital. 13 weeks of that was last summer. The world was turning, people were living, and we were stuck inside the same four walls with no end in sight due to Jaxon’s feeding issues and uncontrolled seizures. I was depressed and by the end, having watched Jaxon fight for his life for four days on mechanical ventilation after his gastrostomy lead a total lung collapse, I had to claw my way back from rock bottom.

But I did. It took time, but I got there, and I learnt to smile again. Being cut off from the world and the people I loved bar a handful of my closest family all but destroyed me. I was determined to fight back and once discharged I set out to make memories with my boy. I wanted to make up for everything we’d missed out on, the summer fun and the family times. We’d lost so much time and I knew it wouldn’t be long before we’d be back there. I had to be kind to myself and remind myself that I was dealing with an unusual and difficult situation. It affected me greatly, but I did bounce back.

Now we’re here all over again only this time I’m not doing it alone. The whole world is united in this fight and everybody is waging a war from the confines of their own home, no matter how great or small.

I don’t doubt these extraordinary times will affect so many people mentally, but when it’s all over you will bounce back. Nobody can say how long that will take, for some it might happen straight away, others it may take a great deal of time, but you will get there and you will be okay again. You will smile again, and you will find enjoyment in life once more. Your mental health will recover.

So how do we get through the next few hours, days, weeks, months? However long this takes. I’m slowly discovering that the key to surviving this without having a complete breakdown is routine. It would be easy to let the days pass without filling them. Maybe not for all of us. But I know I’ve had days where I’ve felt like I can do no more than tend to Jaxon’s basic needs. A day or two like that is fine but I find that if I fill my days with purposeful and enjoyable activities, I feel better and my mood is lifted. That then rubs off on Jaxon and he seems happier too, although he struggles to show me.

Getting out of bed, showering and getting dressed. Now there’s nothing wrong with a PJ/duvet day or ten but I always feel more awake and ready to tackle the day when I’ve jumped in the shower and got myself dressed. It may feel like a real effort when you’ve got nowhere to go and nobody to see but do it for yourself and you may find that it’s just what you need to give you a boost.

Eating and drinking well is imperative, although something I too struggle with. Once I’ve tended to Jaxon and all of his needs, I barely have time to sit down never mind cook a meal. Some days I’ve stuffed my face with junk and that’s okay too. We’ve got to do whatever we possibly can to get us through and if that means a day or two sponsored by chocolate and crisps then fine, enjoy yourself.

We have little to enjoy at the moment after all.

Get some fresh air. If you have a back garden use it, have a picnic, get the paddling pool out. Look up to the skies, they’re so blue in comparison to how they are normally due to the reduction in traffic and air pollution. If you don’t have that space, then use your hour of exercise time each day if you’re not having to shield yourself or your child. I sat outside in the back a couple of days ago with Jaxon and that fresh air was a wonderful feeling.

I love to draw. I don’t pretend to be any good, but any kind of creative activity is good for the mind. Be it drawing, colouring, baking, crafting. It’s a therapeutic avenue and it passes the time. It gets you thinking and you have something to show for it at the end. Get your children involved, no matter their capabilities you can include them and they’ll probably get as much enjoyment from it as you.

Listen to music, watch TV, binge on Netflix. DON’T spend too much time watching the news. At the beginning of this crisis I was spending between 2 and 4 hours a day with the news channel on. I was falling asleep to the BBC news tune on loop in my mind. Then I wondered why I’d wake up full of dread and anxiety. A couple of weeks ago I made the decision to limit my exposure to the news to just 15 minutes in the morning, the briefing in the afternoon then occasionally a quick check before bed. Instead I fill our days with feel good films, CBeebies, music and game shows. I can honestly say since making this change, I’ve felt much better.

If you’re home schooling your children, don’t pile too much pressure on yourself to be perfect.

The majority of parents who are having to home school have no experience of teaching and the general feeling seems to be if you just do your best then that’s enough. If one day your kids spend 12 hours in front of the computer or TV that is fine too. There is no pressure to get it spot on, we’re all just winging it as we go. I’m meant to be doing regular therapy and exercises with Jaxon but some days I’m completely exhausted that I just don’t have the energy. If your kids are fed, clothed and loved in these circumstances then believe me, that’s enough.

Finally, make memories, be kind to yourself, enjoy the time you have with your children. Yes, it’s draining and tiring but this chance to be with your families in these circumstances such as a lockdown will (hopefully) never come round again. Make the best of the time you have with your little people. Then make the most of the time you have to yourself once they’re in bed (if unlike mine, they allow you to). Before we know it, this crisis will be over and life as we knew it before with the hustle and bustle will return. Children don’t stay little forever. It’s absolutely fine and entirely normal to feel angry, upset, stressed and depressed about the current situation we’re all finding ourselves in. But we are all in it together so we have to do what we can to make the best of a bad time. One day this will all be like a bad dream, a moment in history. I know that for however long this lasts, without piling a ton of pressure on myself, I’ll simply be doing my utmost to make the best of the time I’m at home, just me and my boy.

 

Saturday 4th April marks HIE Awareness Day. It’s only the second year there has been a day dedicated to raising awareness for HIE. If that doesn’t tell you that this condition is scarcely known about, then nothing will.

HIE is devastating. Thoroughly devastating.

Even that is putting it mildly. Chances are, if you or somebody you know hasn’t been affected by Hypoxic Ischemic Encephalopathy, you’ve never even heard of it.

HIE usually affects babies shortly before, during or just after birth but some cases of HIE can occur later into childhood as a result of a near SIDS event, near drowning or cardiac arrest. HIE shortly before, during or after birth can be caused by uterine rupture, shoulder dystocia, placental abruption or as in our case sometimes there is no known reason.

It’s hard to imagine that you can go right the way through a pregnancy carrying a perfectly healthy baby for it all to be so cruelly snatched away just before you cross the finishing line. But it’s true, it’s very real, it happens. 

HIE sneaks up on unsuspecting families. It rips away any idea of normality. It replaces the expectations with fear, anguish and heartache. It takes away your perfectly healthy child and replaces them with a great big question mark. It sometimes leaves families wondering whether their child will survive the initial insult.

If they do survive it’ll leave them wondering how severely affected their child will be following their injury. They will have an MRI scan. That may tell them there’s no evidence of any damage. It may tell them their injury is utterly catastrophic. Or it could tell them anything in between.

But then the doctor tells you that the results of the MRI scan mean nothing. Nothing and nobody can predict how the future will be. Nobody can assure you that your child will be okay. The child with a slight mark on their MRI scan may be severely affected, not able to walk or talk. The child with damage in all areas of their brain may be completely and entirely unaffected. 

“Wait and see”

Some families are sent home with NG tubes. Learning how to take an aspirate and check the tube hasn’t moved into the lungs. Some families are sent home with suction machines to manage their children’s secretions. Some families are sent home with a tracheostomy, some with home oxygen, many with medication to keep their child well. Some babies don’t cry, some never stop crying. Some children have seizures. Some are stiff. Some are floppy. Some can’t see. Some can’t hear.

The first year is the most torturous. You watch and wait for seizures. You put your child through endless therapies in the hope that it will equip them with the tools they’ll need to meet those milestones and to give them the best possible chance at some sort of normality.

For some it will work, for some it won’t.

Some children sadly don’t survive that first year. Many do but by the time that first year has passed, the extent of their injury has usually become apparent. That’s not to say if your child seems completely unaffected that they’re out of the woods. Some children don’t show any issues until much later into childhood. 

Some children will receive further diagnoses as a result of their injury as time goes on. Cerebral Palsy, Epilepsy, Sensory Processing Disorder, Dystonia to name but a few.

By the end of that first year though, for many something has begun to change. Many families have started to process and accept what has happened to them and their children. They’ve learned how to advocate for children in the best possible way. They’ve learned that whilst this life is indeed challenging and difficult, it is also rewarding and incredibly beautiful.

The child that has been labelled with a severe brain injury and not expected to achieve much may have started to hit milestones. They may be late but that doesn’t matter. These kids are full of surprises. Some of them stare death in the face and bounce back within weeks, shocking everybody along the way. The child that can’t see may start fixing and following. The child that can’t hear may startle at a loud bang. 

The brain is incredibly malleable. Neuroplasticity occurs from the offset. The brain forms new pathways around the damage and as time goes on, some children will defy the odds stacked heavily at their door. Nobody fully understands the brain and how it works, it’s a truly remarkable organ. 

One of the most incredible parts of this journey is the community that you are surrounded by.

Whilst there may not be millions of people affected by HIE, those that are love hard, care greatly and have a real passion to support families just like theirs. There’s no reason to feel isolated or alone on this difficult and usually unexpected journey. There is a whole world of support out there, an entire army of people who have been there, who have lived it and have a huge wealth of knowledge that is incomparable.

They’ve been in that place of complete hopelessness. They’ve faced fear head on and they’ve wondered how they will ever get through. They’ve lived through uncertainty, intense worry and pain as they’ve watched their child struggle.

So, on Saturday 4th April, give a thought to those families who are living this devastating, challenging and at times frustrating life. Don’t pity them, for their children are equally as amazing as the next in their very own right. Just keep them in your thoughts and if you ever find yourself meeting a family who have been directly affected by HIE, be kind to them.

They may look like they have it together entirely but looks can be deceiving. We’re winging it day by day, some days are better than others, some days it takes all our energy to drag ourselves out of bed.

HIE is hard work.

But one thing I’ve learnt is that these kids are truly amazing, they are the most resilient little warriors who do not let their struggles define them.

It’s March. It’s the start of Spring. It’s Cerebral Palsy awareness month.

Something I knew very little about before the birth of my child. Jaxon is highly likely to be diagnosed with Cerebral Palsy within the next 12 months. It’s one of those conditions that you have to wait to see how a child develops to see if they have CP, what type they have and how severely it affects their life before you can put a label on it.

Waiting for our consultant to give us the official diagnosis, well it’s kind of like waiting for somebody to rip the plaster off.

I know it’s going to hurt, but I’m prepared for it and I know it’ll be okay.

Last year, after one of our many hospital admissions we were sent home with a discharge letter that said one of Jaxon’s diagnoses was ‘Cerebral Palsy following HIE’. It took me by surprise as that wasn’t how I’d expected to receive the news. When I talked to his consultant about it at a later date, he apologised that I’d read it there but he said that the official diagnosis will come from him and it will come in a face to face conversation. He said it was too soon to give him the label but to be prepared that it almost certainly will come at some point

I knew that. I’ve known that since Jaxon was maybe three months old as his limbs were very stiff. I knew as he missed milestone after milestone that it was on the cards. I’ve felt utter sadness and I’ve cried many tears over it. But with time I’m beginning to develop a thicker skin, I’m starting to accept life as I expected it will never be but this life that we are living can indeed be beautiful in many ways.

I’m prepared for the diagnosis now, I’m as ready as I’ll ever be and in some ways I just want to hear the news officially.

I want that conversation over. Once it’s done then I don’t have to do it again, I don’t have to hear the words “Jaxon has Cerebral Palsy” for the first time ever again.

It won’t change anything, it won’t make anything better or worse. It may make life slightly simpler as more people have heard of Cerebral Palsy than they have HIE. But it won’t change life as it is now, it won’t change how Jaxon develops or the overwhelming love I have for him.

It’ll just be another label. Not a label that will define him. Just a label.