Monday 14th – Sunday 20th September

The week started off with some great news.  In mid July, some two months ago I took Darryl to a specialist eye appointment to test his eyes.  At the time of this injury pressure in Darryl’s swelling brain crushed his brain stem and damaged vital cranial nerves.  Crucially, the third and forth nerves were damaged which resulted in Darryl losing the ability to open his eyes and move his eye balls, a condition known as third nerve paulsy.  Something that can be permanent if the nerves in this area die as a result of the injury.    

For over a month Darryl exhibited signs of consciousness, albeit a low level and infrequently, but with his eyes unable to open and being unresponsive to light it appeared as though he was still in a coma.  We now know that this was not the case at all.  Damage to the third nerve was the culprit, something we found out with relief when we arrived at the rehab.  

In early June ,Darryl began to open his eyes himself, using the power of his eyebrows raising to lift his eyelids which were in essence paralysed.  Since this time, I have done all manner of eye excercises with Darryl, getting him to look left, righ, up, down and straight ahead.  In the beginning nothing happened.  He looked blankly back with unresponsive eyes, which given their ‘window to the soul’ nature, was quite disconcerting because there appeard to be not much going on.

In any event, when we met with the eye specialist in mid July he confirmed the supsected damage to the third and fourth cranial nerves and while there was some signs of potential improvement in his left eye, his right eye was still suffereing third nerve palsy.  His vision, tested with wall charts was also very poor.  The great news came though, when on our return on Monday his vision had improved so much he could read all but the smallest line on the range of wall charts and when his eyes  were examined, the doctor said there had been “significant improvement” in the third nerve function and he was making “excellent progress” since the last appointment.

I had to ask the doctor three times if that meant that the third nerve was repairing, because this was so significant.  He confirmed it was definitely the case and he was very confident of continuing improvement which should see Darryl’s eyes return to looking as they did before the injury, something that made Darryl overjoyed.  While we knew that corrective eye surgery and eyelid lifts were a possibility if needed, the ultimate was for the nerves to repair and return the normal function to the eyes.  This appears to be the case and importantly, given the severity of the damage in this area, it shows us that the cranial nerves ARE repairing.  This is huge!!

I have been rubbing and flicking Darryl’s eyelids and doing eye turning exercises with him for three months now.  I’m not sure if that is helping, but if the eyes are anything like the rest of his body, then they need a reminder to ’wake up’ as well.  Certainly when I told the doctor about the exercises he said “keep doing it, because somethings working here alright”.  Darryl and I left the eye clinic practically walking on clouds we were so bouyed by the news.  While I was confident there had been improvement in his eyes since July, I didn’t want to read (no pun intended) too much into it.  It has definitely been a ‘hope for the best, prepare for the worst’ scenario.  Well that hope has been well rewarded!!

That news really set things up for a good week.  Since his birthday Darryl has been using his right hand to eat with and while he has a limited range of movement, just getting food to his mouth is a major improvement on a week or so ago.  All this has come after hours of strengthening and stretching exercises in recent week.  At least three times a day we go through sets of various exercises that have increased in difficulty and range as slowly, nerve by nerve we have managed to regain purposeful movement in his right arm.  There is still a lot of activity related tone (stiffening in the muscles) but this is slowly improving and as we have found with all his other limbs, the more purposeful, self initiated activity there is, the more the tone is ’switched off ’.  The key is to get enough strength back into the shoulder and arm so that this activity can return.  It is a slow and painstaking process, but it seems to be working.

Let’s not forget that for about six weeks his right arm was constricted to his chest, bent up as far as it could be, his fist clenched so tightly it couldn’t  be pried open and his bicep so tight it was impossible bend it open  to even 30 degrees let alone anything close to straight.  For six weeks!  After botox in his muscles (which switches the nerve receptors off) and three casts on his arms progressively stretching it out, we got a point where he had an arm that was not contricted anymore but was not functioning at all.  Well now he is making real progress with it and every day I promise Darryl that I will thrash it at the gym every day until he can raise it up above his head and say – ENOUGH!

Again, I am just applying the old ‘use it or lose it’ philosophy wrapped up with the concept that the brain needs to work out that this ‘thing’ hanging off his shoulder is of use and start sending messages to the muscles to get it all happening.  From this, the nerve pathways that were torn apart through this injury can re-grow, re-connenct and re-establish.  Whichever way you look at it, Darryl is really getting some strength back in that arm and is starting to do things with it he simply couldn’t get close to doing even a couple of weeks ago.

Darryl had another good swimming session in the pool on Wednesday.  Well more of a bob than a swim, but he gets a workout with the physio using the water to not only help support him but also make his muscles work against its resistance.  He loves it though.  And unlike on land when he lets rip with backside ballard, he has the added delight of measuring the power unleashed by the volume of bubbles.  Not surprisingly a lot of his birthday cards made quips about farting.  It seems that this was one part of his body function that wasn’t affected by the injury.  Thank goodness for that, I wouldn’t fancy waking those nerves up!

Darryl’s walking continues to improve, almost by the step.  He walked completely on his own on a couple of occasions this week  for about 25 metres at a time.  He lost his balance once or twice, at which time the physio and I caught him, but it was a very good jump in progress to be going totally solo, something we will do more an more inthe remaining couple of weeks we have at the rehab.  He now has far better control over his right knee and hip that used to collapse  when he walked and on Friday he walked 400 metres on the treadmill, for the first time without needing the physio to assist with picking up his right leg and placing it forward.  Huge improvement!

We also did a hill test, walking up a hill that would be in the order of 25 degrees gradiant and then back down again.  He went well with this and on a timed ‘run’ over 10 metres he went from taking 64 seconds to walk it to 34 seconds.  Usain Bolt need not worry too much at this stage I guess, but all in good time…  

And the week was capped off when we visited Brook, Darryls brother at his new apartment.  An apartment that was on the third floor, some 51 stairs from the ground floor.  Darryl bolted up the stairs without missing a beat.  Maybe it was because a large lunch was waiting for him at the top.  In any event, after spending a couple of hours at Brook’s new place we repeated the exercise in reverse, again something Darryl handled really well. 

We had one of those ‘reflective’ moments over the weekend.  Darryl was laying on the couch and Brenna (his five year old sister) all dressed up in her doctors clothes, compete with stethescope and syringes began to administer ‘medicine’ and check his vitals.  Darryl lay there and played the good patient and I watched on remembering how in those early days when Darryl was fighting for his life in hopital, Brenna would go to the Starship Hospital playroom where she would administer medicine, x-ray and treat the little ‘Darryl’ doll she had made.  It was a time none of us will forget and now something Brenna could play out with her real brother almost oblivious to the path that had brought her to this point.

But for me, as has happened so often, a moment from the past came rushing back to grab me again as if to remind me that time has not healed all just yet.  I guess it is reflective of a new phase of this journey, one in which Darryl is making his way back to good health which brings his dire condition and brush with death just a few months ago into clearer focus.  Another one came this weekend when I was going through some documents in my briefcase and I found an old file note related to one of Darryl’s scans.  At the top right hand corner of the page was a close up photo of Darryl’s face.  The photo while in black and white showed clearly the gravity of his condition, his hands tightly clenched up under his chin, his head misshapen, his eyes closed and looking lifeless.  It was hard to look at and in some ways I refuse to let the images resonate with the consciousness of the heartache those times held. 

So too is it that I can not bring myself to read over the very words I have written in this forum as they hold too much pain, too much fear and a sense of loss that no parent should ever have to confront.  In time I know this will change, but for now I know that I don’t have the courage to face the past when it is so closely linked to the present.  I just want to focus on each piece of my son that he able to get back.

Darryl, with each day that passes your life comes closer to you.  The life that you lived to the full but came so close to losing because of it.  Emerging from this nightmare comes a life more worth living than you could have ever known and we are all blessed that we can share in it with you.

Loss is one of the most defining factors in all of life.  It is from loss that new life grows and it is attitude,  tenacity and character that determines  how much.  Sometimes I used to catch myself mourning the Darryl we lost.  But now, with each passing day, I cherish the Darryl we have gained, as like the pheonix from the ashes you have risen and life has taken on a new, more fulfilling significance. 

I enjoy looking forward again now Darryl.  I know that you do too – now.  If the value in life can be measured by the sense of loss that exists when it is all but taken away, then you are invaluable.  So too you must value the life you have another chance to live and grow to enjoy every day for the gift it is.  

We hoped for this time Darryl.  We hoped that you could make it back to us. We hoped that you could move that mountain.  And stone by stone you have…. You just “got busy living”.               

It is great looking forward again now.

Love you mate.

Dad.