Farewell to 2021

You may think that given the horrible start we had to the year, we would be more than happy to see the back end of it.

2021 is inarguably the toughest year that we have faced as a family.  To watch someone you love have such a devastating injury resulting from an accident that so many of us have had in our lives felt at times to be so absolutely unfair.

But rising from the ashes of that event is the knowledge that:

• My family is that much stronger coming out the other side of this.  We have stuck together, we have been there for each other, we have ridden the wave of this year with all of its ups and downs.  Sure we’ve had our moments but in the end we were all in this for Hayden.
• We have raised resilient, capable children. One whom has taken this new life in his stride and vowed to approach every challenge with positivity and determination, and the other whom has fought vehemently for her brother and been a champion and a cheerleader for him.
• We have amazing friends and family around us. From texts, messages, check-ins, dinner provision, fundraising, venting posts, advice seekers, researchers, hand-holders, advocates - we have experienced the whole gamut of what it is to be loved by those surrounding us.  I will never be able to thank everyone enough or put into words how valuable each and every one of those people have been as we moved through this year.  We are forever grateful for this realisation.  
• Hayden had the absolute best care in his time on the ward.  PAH’s Spinal Injuries Unit is the most amazing group of medical, nursing and allied health professionals, who deserve their praises to be sung from the mountain tops.  I am so proud to be a small part of that amazing hospital.
• We are going to be ok.  We have settled into what is now normal for our family.  We have learned to ask questions about accessibility, to plan ahead to ensure we can include our whole family in activities.  
• We know that we can go away for holidays and Hayden is safe and cared for - there’s not much he needs us for when we plan in advance.
• You can find the right people to help you if you only ask.  One of the most impressive achievements of the year was the completion of our renovations to get Hayden home from the hospital.  We were clear in our expectations, and found a company, headed by an amazing man, who helped us realise those needs.  The home mods OT was pretty impressed with how quickly everything came together.
• We can’t wait to see what is to come.  This family of mine continues to amaze me with what they can achieve. 

So while we had some bad things happen in 2021, we can always find the positives.  As Albus Dumbledore once famously said “ Happiness can be found, even in the darkest of times, if one only remembers to turn on the light.”

2022 is a whole new year of discovery ahead of us.  I can’t wait to see what it brings.

When you feel you’re living a lie

Almost 16 weeks. Almost 4 months. 

I started to write this particular post about a month and a half ago. The words wouldn’t come. My brain couldn’t engage.  I was going through the motions but not really aware of what I was doing - my brain was very much on auto-pilot and it felt like I was sleep-walking through each day.

Looking back, with hindsight, I think that my closest friends could probably tell that I had checked out. I was there, but I wasn’t fully present.  

All of that came crashing in at about the 10 week mark.  We were sitting in Hayden’s Patient Ed session on bladder management and the term “this is something you will need to be on top of for the rest of your life” sent my brain into a spiral.  

Driving home that night I completely lost it in the car.  The realisation that my son does not come out of the hospital “fixed”, that there will be deficits that he will have to overcome for the duration of his life.  That he is more at risk of things that would be a blip on the radar for most of us but can be life-threatening conditions for him.  

I swore, I cursed, I cried, I raged at the world.  This lasted about a week.  I couldn’t contain it.  Every time I read a supportive comment from my friends, inside I kept thinking “if only they knew how broken I am”.  I felt like I was failing Hayden because I wasn’t this strong, stalwart mum that everyone thought I was. I was a fake, a phoney - I was nothing like what I was projecting on the outside - my insides were like a misfiring engine.

My skin was showing my stress.  Red, angry and itchy, my face was showing the signs of my mental wear and tear.  My gut, which is the main barometer of my anxiety levels, had been playing up for weeks.  I was sleeping about 2-3 hours of good sleep a night and then laying awake for hours labouring over things I needed to get done, the what ifs, the whys.  I had daily headaches from the lack of sleep and my appetite came and went on a whim.  Food gave me no pleasure and was merely a form of fuel. If you know me, you’ll know how very un-Sue like that is.

Everything just seemed to be piling on at once. Where was Hayden going to live when he left the hospital?  What modifications will we get? When will the bloody roofer send through his quote so we can get our finance approved? Do I have enough savings to cover the builder’s deposit so we can get the ball rolling? What if they all need big deposits and I can’t get it to all come together in time? What do you mean friable asbestos? Which taps are the best ones? How will we set up access to the back yard?  Is this the right thing to be doing? Is this really a good option for the lift? What have I forgotten to do today? Did I send that report for work? When is that evaluation due? What are we having for dinner? What packing needs to be done? When will that fucking roofer send through the fucking quote? And the list goes on and on and on…

I am so thankful for the many people in my life who have been there in big and small ways for our family.  To the people who have fed us, given us gift cards for groceries (cos they don’t cook 😊), who have sent flowers, cards, messages and texts, who have organised fundraisers, shared our fundraiser links, supported our friends’ businesses who are fundraising, who have gotten us staff pricing for some of our purchases for our renos, who have sent words of support or simply a hug - you have all touched our lives for the better in the last 16 weeks.

I feel like I’ve turned a corner in the last few weeks and am getting my groove back.  Everyone asks what I’m doing for myself. My previous answer was nothing. I was doing nothing for myself and that was not sustainable. 

So I’ve started my nightly mindfulness meditations again, trying to get to a dance therapy session more regularly, making to-do lists to keep track of all the balls I’m juggling, and pushing back when people ask more of me than I can give at the moment.  I’m also learning to share the load - I’ve always made the assumption that I have to do it all but I have an awesome family around me to help me through the tough times.

My focus is still on Hayden and his recovery, but I’ve stepped back a little to give him a break as well.  He knows I’m there whenever he needs me, but the only way he will really get his independence is by me letting him work through some of the challenges and developing his own work arounds.  After all, he’s the most resilient person I know and his positivity knows no bounds. 

As a family, we’ve got this. And PS we are still waiting for that bloody roof quote.

22 February 2021 - What is the worst day of your life?

When people ask you the best day of your life, it can be hard to decide.  Is it the day you met your partner? Got married? Had your first child? Grandchild?

But ask people about the worst day of their life and it's usually pretty definitive.  They know. They can name it without a second thought.  I know mine.   22 February 2021 - is that day for me.

It started as a regular kind of day.  Wake up, delay my alarm, sleep a little longer, then get up and get ready for work.

Once at work, turn on the PC, do some work, have a quick team meeting, until my phone rings.  It's my son and I'm in the middle of the meeting so I decline the call.  He calls back straight away, which he never does, and Beth tells me to answer the phone.

"hey mate...:

It isn't Hayden.  It's his girlfriend, Kate.  I'm not worried, she often messages me from his phone to contact me, or while he is driving and needs something.  But this time there's a frantic note to her voice.  She's speaking quickly and I struggle to understand what she's saying.

"Hayden and I...went to the beach...there was an accident...he's hurt, we are waiting for an ambulance to arrive..."  I don't remember much more, something about bodysurfing, he can't feel below his waist, there was an off-duty paramedic helping, the lifesavers had him on a spinal board and had put a neck brace on him.

I assured Kate that we would head straight to the hospital as soon as we knew which one.  My work team encouraged me to head straight to the Gold Coast, head to the GCUH where he would no doubt be taken.  I told them I would wait - if it was a spinal injury he would be coming to the PAH where I worked, but they urged me to go.  Bernie, one of the best friends I have ever had, grabbed her keys ready to drive me, while I rang Brendon to meet us down there.  I took a breath and logic prevailed.  I called Brendon and told him to come pick me up so we could drive down together.  

Collecting my handbag and phone, I walked to the main entrance, waiting for Brendon, who is probably half an hour away from me.  My mind racing...I need to make phone calls to let people know.  My sister (a spinal unit nurse), my daughter, my mum and dad - all of the people in my life who need to know what is going on.  I keep it light - "he's been in an accident, we don't know the extent of the injury, I'll keep you in the loop."  

My phone rings again - it's from Hayden's phone.  "Hi Kate.."  "It's me, mum..."  My first instinct is to rouse at him - "There better be someone else holding that phone for you buddy..."  He assures me that Kate is holding the phone up to his ear, he is in a neck brace and on a spinal board, waiting on the beach for the ambulance to arrive.  He tells me about the accident, including the fact that he can't move his arms or legs, and can't feel anything below his chest.  But he's alive, and he's breathing unassisted.  He rings off, and I wait for his dad to arrive.

It's a mostly silent ride to the coast.  We are both processing what will come, what may be, the unknown that lays ahead.

We get to the hospital and find our way through the maze of walkways to the ED.  There's a long line at triage, and I join the queue, only to decide that after only about ten seconds that I'm not waiting for that.  I walk to the admin clerk's window and she lets us into the back of the ED to the resus waiting room, where Kate is waiting with her mum and brother.

Kate explained that they'd been planning on bodysurfing and first wave of the morning that Hayden caught dumped him.  He hit his head on a shallow sandbank and immediately lost all feeling from the chest down.  Kate found him floating facedown and thought he was joking. She grabbed his head and pulled it up, only to realise he couldn't move.  Now she was in a battle to keep his head above the water to breathe, while the waves continued to crash around them.  A number of people on the beach realised what was happening and came to her aid, and with the help of a paramedic who was on maternity leave, and the lifesavers (thank goodness they were swimming between the flags), he was stabilised and kept still to wait for the ambos to arrive.

We waited what felt like forever for the consultant to come back to us in the waiting room.  Hayden had fractured a number of vertebrae and he was going to be transported to the PAH where he would have an MRI to determine the extent of damage to his spinal cord.

The relief of seeing him in the resus room was like no feeling I've ever had before.  It was more euphoric than childbirth, more elated than my wedding day, the most immense feeling I've had, that I can't describe in words.

As the nursing team and doctors bustle around preparing equipment for his transfer to Brisbane, we understand the gravity of the situation.  While he is currently breathing unassisted, spinal cord injury can cause shock through the body that can shut down otherwise healthy systems - almost a sympathetic reaction.  As a result, they need to make sure they have everything on board that is needed should his body crash - ventilators, drugs, an amazing air cushion that is deflated so that he is held snug for the ride that will no doubt be a fast, bumpy one - all of the paraphernalia of the Emergency Room.

We watch him loaded into the ambulance, and follow him back to Brisbane, albeit slower than they drive.  At PA, we head straight to emergency, where Bernie finds us and ushers us into the resus visitors waiting room.  We sit and wait for news, get the chance to see him again and then watch as he is rolled out for his MRI.  Bernie has sensed how nervous I am, as I struggle to fill the silences with words, words that will keep reality at bay while they hang between us all.

It's the longest hour waiting for him to return and when we get into the room with his doctors, we get the news we are dreading.  Yes, he has fractured vertebrae, but he also has oedema (swelling) on his spinal cord at C6 and likely has a long-term spinal injury.  I query what long-term means.  The doctor responds "permanent".  

The room goes silent as we all process what that means.  I don't know what to do or what to say to him.  How do I help him process this when I don't even know what it all means.  He's scared - he told me he was - and I tell him we are scared too, but that's easy to say when it's not you that's actually going through this trauma, when it's not your body that suddenly doesn't work that way it always has for the last 20 years.

I hold it together until I walk out of the room, and then it just hits me in waves.  I lock eyes with Bernie and then I'm a sobbing mess and am folded into a comforting hug.  Brendon is there too and the three of us just cry in silence.  I don't like crying, I hate giving in to emotions because I feel like if I do, I may never stop.

We move from resus to an Acute cubicle in ED, where we all sit with him as he rests.  Kate and her mum are headed home and just after they leave, he says he feels sick.  I alert Jake, his nurse, and suddenly people come rushing from everywhere.  If he vomits while on his back there are all kinds of risks - they do a quick log roll, supporting his head and neck the entire time, to allow him to vomit what is potentially some of the salt water he has swallowed.  I lose it for the second time today, realising how precariously close we are to losing him.

Brendon and I discuss who will stay as there is no need for both of us to be exhausted in the morning, so I spend the night with Hayden in ED.  There are no beds available in ICU tonight, and because he is breathing unassisted, they are confident that he can spend the night there - with the ICU registrars checking in on him regularly to ensure his condition isn't deteriorating.  I sleep fitfully in a chair leaning forward on his bed.  Jake has quietly draped a blanket over my shoulders and given me a pillow to try to make me comfortable.  I drift in and out all night, waking when he has his obs done, bloods taken, registrars checking in.

I finally go home after 5am, when Kate and her mum return to sit with him.  As I walk back to my car, it washes over me again, and I spend the entire 20 minutes gasping for breath, my body heaving with sobs, guttural moans wrenching from the very depths of my soul.  I can only imagine what I must have looked like to the early-morning commuters, but given my proximity to the hospital, the scene was probably one that has played out a million times and been seen so many times before.  But I didn't care.  I let the grief just come, I let it consume me.  I wanted to feel this pain, I wanted to feel something after the numbness of the previous night.

I worry when I'm not distracted.  I've heard the stories my nursing family tells about the depression, working through the changes to a life that may never be the same again.  The dreams where they can walk and dance and run again, only to wake up to the nightmare of paralysis all over again.

But this man is strong.  In my stories, I'll call him a boy, not to belittle him, not to take anything away from the man that he is.  I call him a boy because to me he will always be my boy.  He's my baby and I will always think of him as that cheeky little bloke who  loves to give a thumbs up and a smile in a photo.

I know he will have down days.  He's going to want to pack it in some days when it all seems too hard, when he is tired of having to fight for every victory.  And that's ok. Because standing behind him is a family so fierce, so determined to help him find what he is capable of.  I will never label him by what he can't do. I will only every look at what he can do and cheer him on as he achieves it.  He has never seen the extent of what I would do for him and I don’t know that he will ever be able to fathom the depths of that.  I try to explain - I've told him time and again since the accident and god help anyone who gets in my way.  I've raised my kids to stand on their own, to go out into the world and grab every opportunity with both hands and I will continue to encourage that every step of the way.  

I've begun recording all sorts of snippets since the accident, taken copious photos and documented changes great and small.  One day, when it all gets too much, and he wants to give up, I'll show him some of those pictures to remind him of how far he has come.  To show him that quitting is not an option.  To show him how much his hard work has paid off.  But most of all, to show him what he is capable of.

So for now, I'll finish up.  I don't know how often I'll write, but I will write.  I want to tell you all about my amazing friends, the healthcare team, my family and all of the highs and lows along the way. This, to me, is my catharsis and who knows, my boy may even have me write a screenplay about his life story one day.  One can only dream...