22nd of July 2020. A cold, quiet and otherwise unremarkable day. Except for a sniffle and a cough and general misery for Natalie. Such a quiet and unremarkable day that Kerryn memorialised it with one of those innocent little Facebook posts:
3 people comment in solidarity and support, 29 like/care/love it. Usual Facebook stuff.
What we, what nobody, could have known was that this was the genesis for 2 weeks of growing fear, helplessness, hope and ultimately a relief and gratefulness that words can’t begin to describe.
Those that know us will have read the long posts on Facebook that documented our journey through this mini-ordeal, one that could have turned out so differently. Long story short, in the space of days our bright, cheerful, energetic and never-stop moving 4 year old daughter spiralled into a state of paralysis from the waist down accompanied by a burning sensation that would wash over her body in waves of agony. An auto-immune response that was ultimately diagnosed as Transverse Myelitis. Thankfully Natalie is well down the road of recovery. Strong, confident and without limitations.
We were completely blown away by how our friends and family rallied around us in so many different ways over that time. It was incredibly humbling for us and if we didn’t say it at the time, we are are so very grateful for the support and love that flooded our way.
Looking back on this now two other things really stand out for me.
There are incredible people in our public health system.
The number of people that took part in Natalie’s treatment and recovery is staggering. The common theme across every one of them was a warmth, caring and empathy that we don’t usually associate with health systems.
The many, many, many administrative and process failings in our public health system are laid bare on a regular basis for us. We have way too much personal experience with the bureaucracy and fundamental incompetence at work over many years. Where different arms of the system argue over who funds what while the patient goes without care. We’ve received confusing advice, lacking communication and worse yet – receiving letters that are just downright wrong when dealing with very serious potential health issues. We’ve had to fight to get the right outcome. There are massive failings in our system.
But not in the front-line people. Throughout the two weeks that Natalie was being cared for, a string of incredible people came and went day and night.
The humanity on display isn’t something that you typically associate with the sterile environment of a hospital. It’s the little things that these people do that make Starship Children’s Hospital such a magical place for families in their darkest hour.
Issuing Natalie’s bunny with her own hospital band.
Bandaging bunny’s hands while Natalie was under a General Anaesthetic for her MRI and Lumbar Puncture so that they matched when she woke up. We don’t know who did this, but can just picture somebody taking a minute to tenderly wrap his fury little paws. I don’t think they teach that shit at Med School.
Ollie the musician who was so patient and persistent and eventually got Natalie playing along on a range of instruments.
The Radio Lollipop team that not only visited Natalie in her room for Arts and Crafts, but also invited Jono onto the radio which made an incredible impression on him. To hear our shy little man over the airwaves was awesome!
The play specialists that dug out specific toys to meet the requests of a demanding 4 year old girl.
The staff at the Greenlane Hospital Eye Clinic reception for not calling the police as I “abducted” our screaming, fighting child into the toilets to change her.
Claire a nurse at the Greenlane Hospital Eye Clinic who probably caught us at our absolute lowest. She identified the drowning, desperate parents among the masses of people waiting to be seen and threw us a life preserver in the form of some water, a cheese and pickle sandwich, a nappy and a shoulder to quite literally cry on. This incredible woman also organised for her friend who is also a nurse at Starship to bring Natalie some stickers to decorate her special boots.
Johnny , Sarah, Cat and the Physio Team who brought so much energy, optimism and enthusiasm every time they walked into the room. Their genuine surprise and delight every time Natalie showed off her new tricks and abilities was a source of motivation for her to keep pushing harder!
Gina and Sia, the Neurologists who so carefully treated Natalie and explained to her frazzled parents with clarity what was happening at every step. The careful, calming balance with which they communicated was reassuring while never setting unrealistic expectations. We understood along the way that this could have permanent implications, but that her prognosis and progress was good. You hear stories about callous off-hand doctors out there. Not these women.
Raj, the first and last nurse to care for Natalie on the Neuroservices Ward at Starship. She set the tone for our stay with her happy, nothings to much to ask approach and genuine warmth and care for Natalie. You can hear the genuine joy in her voice as Kerryn videos Nat walking out of the Ward for the last time. There were many nurses, all of them incredible, but it was Raj who welcomed us and Raj who farewelled us and so she will forever be the face of the team there.
It must be incredibly difficult work. I can’t imagine what it is like to have, quite literally, somebody’s future in your hands. Where one wrong move, one moment of inattention can have permanent and life-changing implications. A bad day at the office for me amounts to a lot of extra time and paperwork cleaning up my mistake. These people deal with the extremes highs and lows. The reward of bringing people back to health must be immense. The flipside must be absolutely devastating. I honestly don’t know how they do what they do and are able to push reset every time they are about to walk into a hospital room.
They are under-appreciated in every sense of the word.
Not all Superheros Wear Capes.
If you know a doctor, nurse or volunteer, take a minute to share this post with them. Take an extra minute to say thank you. Remind them that what they do makes a difference, that the little things they do have impact and that while people come and go from their lives on a daily basis, they leave with a permanent impression from the time that they spent with them. It might only be 5 minutes, but it could the most important 5 minutes of their life.
The care we received has motivated Kerryn to get out and give back. She has joined Team Starship in the Auckland Marathon to do the 11km Traverse and fundraise for the Starship Foundation so that they can keep supporting the team in providing exceptional care for our children.
If you want to help her contribute you can do so here:
https://aucklandmarathon2020.everydayhero.com/nz/not-all-heroes-wear-capes
Kids are incredibly resilient.
Throughout the entire ordeal Natalie was a star. One that, apart from the terrifying bouts of relentless thrashing and screaming as pain washed over her tiny body, remained perfectly calm and peaceful lying around in a hospital bed for hours on end.
Natalie simply accepted her new “normal” and got on with life. It definitely helps when you get served Jello and Ice Cream on the daily and have ice blocks available on demand. While Kerryn and I struggled to keep our shit together Natalie just stated the obvious and did what she could. “My legs don’t work” she would tell volunteers and visitors. A simple statement of fact.
The speed with which she accepted and embraced a wheelchair. Equipment who’s arrival really brought home the stark reality of what our future might hold. For Natalie it brought renewed mobility and adventure. She didn’t see the limitations and complications that Kerryn and I immediately had running through our brains, all Nat saw was freedom to get around without being carried!
Later as she started exceeding every expectation that the doctors and physio team had for the speed of her recovery, nothing was really a big deal for her. One evening as she sat in her made-to-measure chair eating her dinner, she decided she wanted to look out the window at the Sky Tower. At this stage she hasn’t walked or even been able to stand unassisted in over a week. So after trying to crane her neck to get a peek failed, she simply planted her little hands on the arm rests and stood up. Kerryn and I look at each other in shock, followed by hoots of delight, tears of joy and high fives for a little girl who looked very perplexed at all the fuss.
As we were warned that recovery could plateau and we needed to make sure that Natalie was resting and not overdoing it, she refused to be held back. Her relentless drive to do things and sheer force of will was unstoppable.
What Natalie will probably never realise is just how differently this could have all turned out. As she started her out-patient rehabilitation care, running, spinning and dancing her way around the house, we learned that the other patients they were seeing for the same condition all had significant long-term disabilities. It re-enforced just how lucky we were that Natalie got such exceptional care as quickly as she did.
You read about how top-flight athletes develop mental fortitude and a short memory when it comes to making mistakes. When developing your golf game one of the things they talk about is allowing yourself ten steps to think about the last shot before forgetting about it and focusing only on the next one.
It’s simpler than that.
I think we can all take a leaf out of Natalie’s book and constantly focus on what we can do right now. Ignore the limitations that others place on you and believe.
Just believe in yourself and live for today.
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THEDAVISBRAINDUMP 
Powerful writing….we feel 😪
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I sat here with tears rolling down my face as I read this. Beautiful and powerful words. Thank you for reminder of just how lucky we are to have these amazing people In the world who do such special work. I have some incredible people in my family and friends that are nurses who are part of this special breed of human
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I hope you don’t mind this was passed on to me by Becky (neuro specialist nurse at starship). I’m so blown away with Natalies determination in her recovery and it was such an honour to be involved in her care (even just for a snippet of her journey). As I said at the time, just keep putting one foot in front of the other. Love to all (especially rabbit) , Claire (the eye clinic nurse)
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I’m thrilled this got to you Claire, and hopefully everybody involved in Nat’s care and beyond! As a family we have spent far more time than we would like in and around hospitals. The common theme across the years has been incredible people like yourself who have gone out of their way to make the hard times that little more bearable.
Please share freely, the purpose was to openly thank those that dedicate their lives to caring for others and to remind them of the impact that you have on the people you look after.
Thank you, thank you, thank you!
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What a wonderful story. So glad it had a happy ending. xoxo
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