Another whirlwind week for Will. The combination of media attention and a new infection seems to go hand in hand at the moment. Infection has become such a “norm” in Will’s new world that you stop questioning the “how" and the “why" and just accept a new course of antibiotics, more tests and visits from infectious control. Will never does anything in a half-baked way, so he’s managed to contract every “non typical” bug going around. Really hoping he finds a “non typical” level of recovery from this bloody injury!
I struggle to watch the media coverage of Will - I would give anything for him to not have this as "his story". But this is "his story" now and so I think it’s really important that it’s told with honesty, respect and authenticity.
On January 16th 2016 if you asked me what quadriplegia was, I’m not sure what I could tell you. I could tell you that it was bad and that the person was in a wheelchair and that they didn’t have a life that I would ever want… but on January 17th I quickly became educated on what that horrible word starting with “q” actually means. For many of you the first time you knew that Will’s spinal cord injury (SCI) had left him with quadriplegia was when you heard it through the media. It’s not something I have ever written about, nor explained as it scared me, shattered me and buried me, all at the same time. But a number of people are confused after seeing Will on TV this week and are unsure of whether they are witnessing a miracle as he moves his arms and hands around - so I think it’s time I clarified what Will’s diagnosis is so you can all understand it and consequently support him and us in the best way possible.
Will broke his neck at C5 - in the world of SCI - the number you have next to that C is critical. If Will had broken C3 or C2, he would more likely be ventilated for life, if it was C7 or 8, his hand function would more likely be far less affected. (I use a lot of “more likely” because we are learning quite quickly that each and every SCI is like a thumb print - no two are alike. If we put two C5 accident patients in a room their injury and resulting physical function would be different.)
Will had surgery on the night of his accident and they removed the damaged veterbrae that was putting pressure on his spinal cord and replaced it with mesh.
No matter who you are, even superman, a C5 spinal cord injury leaves you a quadriplegic. Quadriplegic simply means 4 limbs are effected, paraplegic - 2 limbs. Will has 4 limbs affected. He has great biceps - those guns are still pumping! His triceps (which we’re learning are one of the most critical muscles to have when living life seated in a chair) are only just there. They are weak and difficult for him to engage… you need triceps to lock your arms and move from bed to chair, chair to car, etc… and they’re pretty damn useful when pushing a manual chair.
Will has good wrist movement - this is what you are seeing when you notice him moving his hands around. Will has no function in his hands what so ever. Take a few minutes out of your day and pay attention to how much you use your hands. Will is desperate for his hands… we are desperate for his hands… we went from parents who dreamed our son would play AFL one day to parents who dream that their son will be able to make a pincer grip… one day.
Will has no function from the nipple line down. He can’t sweat, control his blood pressure or temperature, engage any muscles at all. This core greatly effects your life and for Will, greatly affects his ability to play sports such as wheelchair basketball.
And no need to point out the obvious (but I will so we’re all on the right page) - Will has no function from the waist down. Those beasts of legs that Will was renowned for are already half the size they used to be… but Will doesn’t say much about his legs. I think we teach our kids not to be greedy and so if he could only have one wish - it would be those hands.
Will can put a splint on his pointer finger and swipe an iPad, he can use gravity to let his hand dangle which naturally moves the thumb closer to his fingers so that he can pick up a small ball in rehab (with barely any grip strength) - but holding a pen, a toothbrush, doing up buttons, pulling down zips (one day unclipping a bra strap - at least 10 years down the track I like to think)… we can only hope, pray, wish, dream…
So here’s the thing I want everyone to understand… Will is Will - but he has a spinal cord injury. He is not a quadriplegic (and that’s the last time you’ll ever see me write that word). We have given him permission to dream as big as he wants to dream and will support him with every ounce of our being to give him every opportunity to recover.
The world we have stepped into is hectic… we desperately want to just be by Will’s side but we desperately want him home to start his recovery. We spend our days frantically switching between house and car plans, researching cutting edge rehab, meeting with people who have been there and done that. We consult people in mainstream medicine, alternative medicine and everything in between. We try to get Will to meditate, eat well, sleep well, be polite, do his rehab and find gratitude in each day (anyone with a 14 year old son knows how impossible that list of things is to achieve!). We try to massage him, move his legs, pinch his toes and give sensory touch to his whole body as often as possible - everyday. We try to make our other 3 children feel loved and valued and important… and we try to very occasionally have a conversation with each other.
No-one can do this all on their own… it takes a bloody army - and thank goodness we’ve got a great one! More hands make light work (so they say) - so roll your sleeves up team there’s plenty to be done.
Dream big for Will… hands, legs the whole shebang!