If I only had a heart – Courage, 6C’s part 5


From caring comes courage – Lao Tzu

As a child with disability, your only option is to have courage. As a parent of a child with a disability, your only option is to have courage. As health care professionals I need you to have courage.

I only have to look across the room to see the strongest, most courageous person I know. He was born early, not ready, removed from comfort and unaware of any problems, fighting for life, made no breathing effort for the first 2 minutes, was vented for days, CPAP and BIPAP for weeks and had a trachy at 8 weeks old. He spent nearly 4 months in NICU, PICU, HDU. He needs 24 hour care, he battles to start to gain some independent muscle control despite having quad bilateral cerebral palsy, has over 100 appointments a year of various sorts, has 6 hours physical therapy a week, has never tasted liquid or tasted food, has never made a verbal noise. He does all this, knows no other life and somehow enjoys life and doesn’t think it’s a bag of crap which any of us adults would think it was if we by some terrible accident ended up having that same 3 years that he has had. Isaac is an fighter, a battler, a true survivor and an inspiration.


But as far as the world sees it he’s a ‘disabled child’.  That’s ‘less than a child’ in how it sounds.  He’s a little dude first and everything else is second, don’t define him by his disability.  Anyway, that’s not much help to you reading wanting to know what I think about 6C’s and courage but I think it sets the tone in terms of there’s problems with how we define it.

Isaac has no choice other than to show courage, and embody it.  As parents, I suppose we have no option other than to show courage.  It’s either courage, strength or resilience, I’m not really sure which it is that keeps you rolling with the punches.  To go back to the next appointment where you know you’ll get more bad news, but to keep going.  I hate it when people say ‘you’re so strong’ and suchlike, my answer I feel like screaming is ‘well you probably would be faced with this sh*t but you’ve just never had to find out how strong you can be’ ; I’m not abnormal as dads go, we’re not abnormal as a family, we’re just shaped by what faces us.

Anyway, for me, courage in the 6C’s has a great stand out example I can share.   A nurse who was looking after Isaac in the early days in NICU had concerns in the middle of the night that he was uncomfortable with reflux which he suffers from still.  The nurse, wanted to call the ‘on call’ registrar to get new medication prescribed but was told by her senior not to because the reg ‘was busy in the other room and Isaac will be getting reviewed in a few hours (ie the morning) anyway’.  The nurse, thankfully, went against this and called the registrar.  Now, I never name the nurse because of obvious reasons, but if I could I’d hold her up for a ‘Best nurse in the universe’ award.   The point is she realised one core thing ; that she works for the patient, in this case the little baby who cant raise his own needs, and not for her manager.

It’s the whole defensible vs defensive issue isn’t it at the heart of it? Anyone that has made the decisions about Isaac that have made the difference has been someone who makes defensible decisions with full view of their professional parameters.  Nurses who’ve said ‘visiting times don’t matter, he’s ill’, commissioners who have (eventually, and it took a hell of a battle) created a pathway to get his SLT feeding support needs met, ENT consultants that have bought a piece of equipment from the US at high cost risking the wrath of budget holders because whilst not the usual operation it would be the one with the most benefit to Isaac, the doctor who keeps prescribing omeprazole in solution at a high cost despite being told by whoever directs the system that he should only be prescribing tablets to then be ground up (because he know’s its nigh on impossible to fine grind enough to get down a tiny PEG in a 3yr old).  Each and every one of them are ones who make a difference.  You nurses work in grey areas, and are professional, the minute you lose professional discretion to feeling you cant do what your manager has said you cant is when, for me as a parent, I want to see your ‘guts’.  I’m a manager in another life, and I expect to be challenged, the professionals I manage would worry me if they couldn’t make their own defensible decisions and point out what I don’t know sometimes.  Systems can be poor, policies can be improved, decisions need to be made where they can be made.  Sorry if that sounds like a call to arms but nothing is more frustrating as a parent of a child that needs so much support than to be told ‘well that commissioner has said no’ or whatever ; push for Isaac, fight like we’ll fight for his needs, show us your battle scars and we’ll buddy you up and back you all the way. Not that my sentiment would help you in supervision sessions with your manager…!

So, define courage however you like to but I hope anyone reading never loses sight of the fact that when you show it as a nurse or other HCP you will create a permanent legacy.

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