Monthly Archive for June, 2009

Sunday 21st – Sunday 28th June

Published on 29 June 2009 in Progress. 40 Comments

A week can be a long time in life as we found out 9 weeks ago.  They don’t seem to drag by as much any more, in the main because Darryl is forging ahead making such positive progress now.  I have almost found myself looking forward to the next day, where for so many weeks I dreaded each new day and in the beginning I was struggling to even face them.  

Darryl has turned a number of corners in recent weeks, each adding to the last and building hope from the ground up like a skyscraper under construction.  But the major corner turned in the last week has been his return to talking!  He is back!  

As with all in recovery from serious brain injury, the old nerve pathways have been severed and you have to find ways to re-start them.  This is easier with limbs and extremeties as you can manipulate them and make them work, but how do you do that with a voice?!  When someone has ‘forgotten’ (for want of a better word) how to speak, how do you begin to re-start this essential function?  I tried massaging his face and neck and this helped him to murmur but it was not improving anything.

Last weekend I had an idea that laughing might help as when you do this, sound comes out automatically.  All I had to do was get him to laugh!  Bearing in mind Darryl has had no facial expression since this incident I knew just getting him to smile would be a task, let alone laugh.  As I mentioned last week, I decided to show him a video of someone farting repeatedly, which he found amusing enough that he did start to smile.  A breakthrough moment.

Over the course of Monday,  Tuesday, Wednesday I made as many jokes and wise cracks as I could, trying to encourage  laughter.  And slowly the odd, beginnings of a chuckle sprang forth.  I worked with this as much as possible and by Friday night we had some genuine “haha” sounds coming out.  Friday night I spent about an hour getting to him make two haha sounds then three, then four and so on.  I also had him do morse code haha’s like hahaaaaaha.  He was now effectively able to make sounds (albeit needing to be kick started with a joke) and realise that he was reponsible and in control of the sound coming out.

The breakthrough came at about 7.3o am on the Saturday when I was doing this haha practice while I was doing his stretches.  Once he was up and running and the “haha’s” were flowing I said hahaha – how, he repeated it back.  Then I just said “how” and he repeated it.  I then said “how are you” sort of all run to together, and he said “how are you”, to which I replied, I ‘m fine Darryl, nice of you to ask, then promptly burst into tears of joy as we both laughed.  

From there, it was like a switch had been flicked and talking was back in gear.  Over the next half hour I thought of as many words beginning with ‘H’ as I could and confirmed in my own mind, and his I expect, that he could and was doing it.  Within a short period he was clearly saying three or four word  sentences and while speaking slowly and needing considerable effort it was clear he could speak relatively normally.

So it was that with a little coaching as Catherine , Brook and Brenna, my parents who were down staying with us for a couple of days, and my brother Len and his wife and kids, entered his bedroom they were greeted with Darryl asking them “how are you doing?”  And for each new visitor he asked, he shed a tear or two of joyful relief as the recipent of the question stood, mouth dropped open with tears running down their cheeks.  It was very special.    Brenna was absolutely gob-smacked and giggled uncontrollably as she stared at Darryl with rekindled joy.

Since Saturday morning Darryl has taken some degree of pride speaking to all the staff at the rehab and even shared a couple of words over the phone.  Improvement in his talking was made even within 24 hours.  And what a moment of pure  jubilant relief it was when I asked Darryl how he felt about being able to talk again and he said “I feel good Dad”.

So that is a major milestone ticked off but there have been many others over the week.  Each day brings a new set of achievements and improvements.  Some of these this week have included progressing from having a few sips from a cup to downing an entire glass of water, gulp after glorious gulp.  He had his first coffee today(abeit cold) he really likes a coffee. 

Once he started progressing with swallowing water we started to introduce yogurt to him.  He has gone from a teaspoon or two of yogurt, to this evening having baked beans, a scrambled egg, half a banana, half a pot of yogurt and a cup of juice.  This was on the back of having a fairly impressive and equally sizeable lunch earlier in the day.

He now brushes his own teeth, not only exercises himself in bed, but arranges his his pillows, sheets and his right arm which has been in a cast most of the week as we have been working to break the tone and straighten it out.  

This week has also seen major improvement in the gym, Jim, but not as we know it.  He has gone from being hoisted to standing in a sling to just being stood up from a seated position and then helped to keep his balance.  He does a quarter squat and then stands back up from it.  He shifts his weight from one leg to another and bends each leg and re-straightens it. 

He has now been sitting upright on his own for over two and a half minutes, doing bicep curls, shoulder presses and chest presses.   He bridges (lying on his back with his heels up to his bottom) he lifts his bottom and back off the mat.  He will do sets of 10 of these at a time.  He then does trunk twists, twisting his legs from one side of the mat, up and over to the other.    

He is doing resistance activities now where he is not just being stretched or doing an exercise, they are applying resistance to his movements to build strength.  Each day he improves his range of movement and increases his strength, physical and no doubt mental.

It has been a very good week of progress and re-gaining a lot of what is taken for granted in day to day life.  He has been in the rehab facility for almost five weeks.  I can only imagine what he will be like in another five weeks time.  I can not speak highly enough of the terrific team of skilled, caring and compassionate individuals who have been working with Darryl.  It is definitely a team effort and they all go the extra mile, every day.  We are fortunate to have such an amazing facility in New Zealand and even luckier to have the people working there that are .

Darryl, it has been a huge week and it is hard to single out one highlight from another.  There are so many.  But of all you have done to date, hearing your voice for the first time and seeing you cry with relief, surprise and happiness as it happened, is something I will never forget and will always treasure.  It has been a monumental struggle for you so far and you have come so far, back from the brink.  There is a long way to go and many stones yet to move but the load gets lighter with every milestone you achieve.

To hear your voice, your feelings and your thoughts over these last two days has filled my heart with a new sense of joy and hope.  It is a major part of you that I feel we have back.  The parallel universe we have traversed together has now become one.  And it feels so good.  It just feels so damn good.

Love you mate.

Dad.

Friday 19th – Saturday 20th June

Published on 20 June 2009 in Progress. 35 Comments

The milestones continue to pile up.  Each of the nurses and staff that haven’t seen Darryl for a few days are commenting on his obvious improvement.  It is due in the main to the fact that his improvment is consistent and on many levels.

Darryl is now able to drink water from a glass and is really enjoying that after 8 weeks of drought.  Hopefully next week this will progress to some eating of ice cream or yoghurt and then pureed food.  I hope they have got plenty in their cupboards!

He had another good day at the gym on Friday with some  some sitting exercises and then some punching of some hand pads as you’d see in a boxing gym.  Shane Cameron will hardly be trembling in his boots at the speed of Darryl’s left jab at this stage, but it was followed up with some fairly good bicep curls which may have him wondering. 

The speech therapist who was at physio wanted to try and get Darryl to make grunting noises as he exerted, so I suggested they give him a heavy dumbbell to do some curls with.  They came back with a 4 kilo (4 times the weight which has been working with to date) and Darryl promptly started curling it like he’d never stopped.  Consequently, the curls continued with out the hint of exertion.  Maybe a deadlift will be in order!!

Darryl was hoisted up with a standing sling again on Friday and this time stood very well, unsupported and with all his body weight as the sling was released.  It was a promising effort  and so heartening to see.  A real positive from my point of view was a test they did with him involving his reactions.  The physio let him fall (in a controlled fashion) to his side from a sitting position on a padded bench to see if he would put out his arm to stop himself – he did.

She then repeated this test another four times and with each attempt she increased the speed she  ’encouraged’  the fall to occur.  Darryl’s reactions were extremely fast, his arm and shooting out to prevent the fall on each occasion.  Very positive developments.

Today (being a Saturday) was a little more laid back, literally. But there was two highlights.  The first was when Darryl burst into silent laughter.  I decided to show him a video on my laptop that involved a rather amusing clip involving ’steaming’ given it was so amusing to him the other day.  While he couldn’t see the screen too clearly, he could certainly hear it and and by halfway through his face had lit up with  a huge smile more akin to silent laughter.  I watched him with tears rolling down my cheeks, sharing in the joy he was obviously feeling  and marvelling at the fact that he could actually show it. 

The next big moment in the day came when Darryl had a visit from his favourite dog Jimmy that he trials with.  Merv, his original owner brought Jimmy down and when he came into the room, Jimmy went straight to Darryl and recognised him immediately, licking and wagging his tail.  Darryl stroked and patted Jimmy lovingly and burst into another glowing smile when Jimmy leapt onto the bed to get closer to his master.  It was great to see.  Darryl was delighted to have that time with Jimmy and it appeared it was a mutual feeling between dog and master.

So another good couple of days in terms of carrying away those stones and while there is a long long way to go, he is not wasting time.  The important thing is good quality, quiet undisturbed rest and the ability to maximise the various forms of therapy each day.  There is a lot of work needed on his right side which has suffered badly from the storming, but hopefully over the next few weeks we start to get some movement there as the muscle tone reduces.

Speaking of storms, it is fair to say he has weathered it.  We are now moving to a genuine recovery phase, something 8 weeks ago we were told was very unlikely.  It’s now time for me to ensure that my focus on his recovery is  just that, on his recovery.  This being the case I am going to update the site on a weekly basis rather than daily as even I am finding it hard to keep up with him at the rate he is working.   Please feel free to keep sharing your comments and look forward to keeping updated on his journey.  Knowing Darryl he will be looking to break all the records on his long way back.

Darryl, eight weeks ago Catherine, Brook and I were sitting scared and shocked in the critical care ward of Auckland Hospital, desperately clutching to the thin threads of life you were hanging by.  We now watch every day as piece by piece you recontruct yourself using every thread of determination and character you have.   A lifetime of turmoil and emotion has filled those eight weeks, but with each day that now passes those feelings which will remain etched into our hearts and minds for all time are being overwritten with the joy of recovery and the possibility of your progress back to full health.  Keep that mountain moving mate, I’m sure the view from the top of the new one will hold something special for you.

I’m just so glad you’re back.

Dad

Wednesday 17th – Thursday 18th June

Published on 19 June 2009 in Progress. 15 Comments

It is getting hard to keep up with Darryl’s milestones!  Even his physio is struggling to adjust the programme to keep pace.  Each day he learns, or re-masters is probably more appropriate, a former function.  To name a few, he can now turn his head left and right, up and down.  He can poke his tongue out and to the left of his mouth and the right.  He scrubs his teeth with great finesse and can use a torch to pinpoint photos, and any item we name that is on the wall on the opposite side of his room.

Up at the gym he has been been rolling onto his side, mostly under his own ’steam’.  Actually that is probably a very appropriate term to use because his own ’steam’ is working very well as I found out this morning when stretching his thighs up toward his chest.  It was a special moment, not because I was in the firing line, but because when I responded with a suficient degree of repugnance, Darryl smirked – the first time I have seen him smile in 8 weeks.   I guess it was worth being ’steamed’ to see that. I think!

He has been pushing himself up to a seated position from lying on his side. He has been kicking a balloon with his left leg and is now starting to get a tiny bit of movement in his right leg.  He pulls his shirt on and off and helps pull his shorts up.  He washes as much as he can reach when he’s in the shower (that is a bath). He even takes off his rugby head gear – identically to how he has done it for years.  Each day he gets something, or lots of things back.  As Bill Thurston keeps reminding me, he is putting the pieces of the puzzle back together.  And much like a jigsaw puzzle, when you get to a tipping point in that the picture starts to make sense and the amount of pieces left makes it easier to see ‘what goes where’ , it all starts to happen with more deliberate purpose and the process develops a life of it’s own.

I’m not sure that we are anywhere close to that yet, but the ‘carrying away of stones’ is certainly making some serious holes in the mountain to be moved! 

Yesterday brought a classic Kodak moment when the speech therapist was working with him and wanting to illicit a smile.  This is difficult because the tapestry of facial muscles are still in the process of waking up as the nerves  start to fire again.  Anyway the therapist ended up using her fingers to push the corners of Darryl’s mouth up to form a smile.  Having done this a couple of times she asked Darryl to try and smile, to which Darryl sat for a few seconds, emotionless.

What happened next had us in hysterics.  Darryl, obviously tiring of not getting his face to work, brings his hand to his mouth and skillfully using his thumb on one side and forefinger on the other forces the corners of his mouth up into a smile and then turns his head to face the therapist.  It was priceless!  And so Darryl.  If I can’t do it one way, I’ll find another.

Darryl, you may have been knocked down, literally as well as figuratively, but your spirit, courage and strength have never waivered and at all times remained intact.  In many ways, it is those qualities that have seen you survive this most foul hand of fate.  What was fear and anguish beyond my wildest nightmares is now giving way to the seeds of recovery and a new sense of future.  There is nothing surer than all our lives have changed forever as a result of this. 

Lets ensure that the change is like that of a forest felled by fire in that new growth flourishes with the passing of the old.  That new trees will now stand taller and stronger than what their predecessors did.  In nature we learn that it often takes tragedy for real growth to occur and the ashes of destruction are the catalyst for change rather than the remnants of loss.   And never forget, that the mightiest oak tree grows from the tiniest of acorns.

Keep passing the test of you Darryl.

Dad

Tuesday 16th June

Published on 16 June 2009 in Progress. 11 Comments

Another day piecing back the puzzle.  Darryl added a few more firsts to his growing collection when he had his gym programme today.  He made a good effort at rolling over and demonstrated a lot more control over his left leg, and even a little with his right (which has been very tight from the storming for weeks now).  But the major advancement came when he was able to ‘bridge’.  This is the name given to lifting the backside and lower back of the mat while the legs are bent up.  It indicates growing strength in the core and and trunk which as I have mentioned is a key factor moving forward.

While at the gym, the Physio and Occupational Therapist also placed a cast on Darryl’s right arm, which is the first step in trying to break the tone in this arm and getting some normal movement back in it.  Over the next three weeks he will have a series of casts applied to his arm, each new one increasing the degree of extension than the last.  It is a painful process, expecially in the beginning when Darryl’s arm is under the first major stretch for weeks.  I just hope he can cope without too much discomfort.

The other notable achievements for the day was getting Darryl to be able to move his head from left to right.  I joked that he looked like one of those circus clown heads I remember from Easter shows, that rock their heads from side to side while you endeavour to pop ping pong balls into their mouths.  He didn’t laugh, but I’m sure he was smiling on the inside. 

He also managed to poke his tongue out for the first time.  We were doing some mouth opening exercises and I decided to touch the end of his tongue to stimulate some sensation.  All of a sudden it popped out!  It may not sound much, but the tongue movng is essential in speach so it was significant.  Between that and the facial massages I am laying on him three or four times a day we hope to get some speech developing.  All in good time.

Darryl, each day you exceed the expectation and the established ‘norms’.  Darryl, each day you demonstrate to the rest of the world what I have always known.  The flame that is your character has remained burning brightly throughout this darkest night.  And that same light will lead you home.

Keep passing the test of you, mate.

Dad.

Monday 15th June

Published on 15 June 2009 in Progress. 12 Comments

Darryl saw the world from a view point he hasn’t had for over seven weeks – standing on his own feet.  Today at physio, based on his good progress late last week and over the weekend, Darryl was placed in a standing harness and hoisted up into a standing position.  From there he stood, supported from the waist and legs but in the main, supporting his own position and stance.

He seemed to stand a little taller than I remember, possibly an indication that he has grown an inch or two, metaphorically more so than literally, but nonetheless I was a proud Dad to see him upright and ’standing tall’.  It was great to see also as it indicates he has good strength through his core and trunk region, which is essential in getting moving. 

Also during physio some work was done with his sitting and he made real advances in getting his shoulderblades back, putting his chest out and lifting his head so it wasn’t falling forward onto his chest.  He seemed to master that quite well and for the rest of the day he was lifting his own head back with relative ease.  So in all this was another big step forward in terms of physio.

It could be that he was prepared for a big day given how his morning started.  He was off first thing for a bath (which is more of a lying down shower in a rectangle paddling pool), but very enjoyable for him all the same, not the least because he has two caregivers tending to his every whim.  From the bath he was returned to bed where he had his toenails clipped.  He then had a foot massage, while I was giving him a shoulder, neck and facial massage.  No wonder he drifted off into a blissful sleep – who wouldn’t having had a day spa experience like that!?

He was seen by the speech therapist after his pampering and was able to brush his teeth with real dexterity and showed some positive signs that his potential to start speaking was not too far from surfacing.  This of course will make a significant difference in understanding his wants and needs, given most of communication at the moment is either my instinct, a few finger signals or process of elimination.

This afternoon Darryl woke to see his sister wearing her new school uniform after her first day at school.  She hopped up on the bed with him and he promptly wrapped his arm around her and gave her a big cuddle and as she lay there he began to play with her hair as he has done so many times before.  Brenna began to giggle with reassured delight at such a familiar feeling of sibling bonding.  She looked up adoringly at Darryl and said “Darryl, you’re the best brother in the whole world”.  A special moment, followed closely by a moment of hilarity when she said “am I the best sister in the world too?”   He didn’t answer, but I’d stake the house on what he was thinking.

United we stand, divided we fall…..  Darryl, you are healing us all as you heal yourself.

Love you mate.

Dad

Sunday 14th June

Published on 14 June 2009 in Progress. 4 Comments

And on the 7th day he rested….

Not much to report today other than he is resting far better now that we have his pain and discomfort issues more under control.  I did a whole range of exercises with him this morning, with a small dumbell, cones and his dog whistle.  He did he leg raises and I managed to get him to lift his backside and the left side of his back off the bed, by levering off his left elbow while his left leg was bent up at the knee.  He is certainly getting more mobile as bits of his body slowly start to wake up.

His eye opening is getting better each day, much to the delight of the caregivers at the facility who giggle pleasingly when he opens his eyes for them.  All the staff there do an amazing job and we are very glad of it.  They are all unsung heroes in my eyes and I know Darryl appreciates the devotion they show to his care.

So another new week awaits, each one has had a little more promise than the last.  Interesting how hope and possiblity, my staple diet for the first four weeks, is slowly giving way to expectation and promise.  It is a tentative merger of emotions, but it is not a product of thoughts, it is a result of actions and achievements.

Darryl, the mountain is getting a little smaller and your ability to keep moving it is growing a little each day.  Remember though it is a marathon, not a sprint and for each day of groundwork you put in now, you will no doubt ensure there is more in the tank for later when the really hards yards begin.  It is fair to say in this and so many other walks of life, it is not so much what you do that will define you, it is the way you go about it.

Focus always on the right way to about  it Darryl, the rest will take care of itself.

Dad

Saturday 13th June

Published on 13 June 2009 in Progress. 13 Comments

Seven weeks.

Having got on top of some of Darryl’s pain and discomfort issues Darryl had a far more restful day today.  It lowers the stress levels significantly!  You can almost see the healing going on when Darryl lays there with his new-found snore gently rumbling away.  

I did quite a few short sessions of physio and basic activities with Darryl today as there is no physio on the weekends.  He performed really well and when I asked him how many leg raises he wanted to do with his left leg he put five fingers up.  So five leg raises he did, each time getting his entire leg off the bed.  Then I noticed Darryl was lifting his head and shoulders off the bed.  I asked him if he was in pain because he looked as if he was cramping in the stomach.  When I asked however he said he wasn’t.  To my delight I soon discovered  that Darryl wasn’t cramping, he was actually trying to sit up.

This was closely followed by him engaging his left arm to press into the mattress as a lever and actually lifting his whole left side off the bed and then able to shimmy his backside sideways.  I said, “hold on mate you’ll be climbing out of bed if you keep this up”, to which he threw up a thumb.  What it all amounts to is Darryl’s left side is waking up and he is exercising himself in bed. 

His nurse for today sat beside his bed at one point today and said to Darryl that he was avery determined young man.  I asked Darryl on a scale of one to five, one being not very, five being extremely, how determined was he.  I don’t really need to tell you how many fingers shot up into the air…

The other treat for the day was coming into the room to find Darryl had woken up and had his eyes open looking around.  For the first time, without any prompting as such he had opened both his eyes.  Another milestone in the mountain he’s carrying away.  It is now a regular occurance for him to open his eyes (as far as he can anyway) when he is awake and not too fatigued.   

The only thing he got badly wrong today was his pick for the All Black test.  He picked the ABs to win by 10.  I’m not sure what happened to that script.  I thought his pick was pretty much on the money.  Oh well something for him to work on I suppose.

So seven weeks into this nightmare, Darryl has shown what he is and has always been made of.  There are times when I think back to Darryl prior to this tragedy and the life we knew then.  It is hard because in so many ways it seems like a world away.  In that sense it is disheartening to call on those memories because the reflection comes at the expense of accepting the reality of today.  But as these milestones are achieved a new bank of ‘Darryl’ memories begin to develop and the Darryl I knew prior to this event becomes in some ways an enhanced version of the former.  They say that traumatic brain injury often changes the personality of a person.  It is hard to see how that could be the case with Darryl because the one thing that has remained totally and utterly intact throughout, has been his character, his determination and his courage.  This is who Darryl is and in my view is the only reason he still ‘is’ and not was.   

Darryl, having fought your way back from that which most would have fallen, it is clear to me each day that what hasn’t broken you is making you.  There is not much more I would have thought you needed to ‘make’ before this, but real tragedy and adversity are the seeds from which the most meaningful of growth will sprout.  Maybe, just maybe, this experience is part of your coming of age in this regard. The test of you, that only you could withstand, because real growth comes only when you are put to and pass the test.  And pass it you will Darryl.

Keep strong and true.

Dad

Friday 12th June

Published on 12 June 2009 in Progress. 8 Comments

A few more steps of progress, a few more layers of frustration probably sums up today.  Darryl has over the past day and a half been able to lift his left leg, from his hip, right off the bed.  It would appear he may have been doing some exercises in bed.  Well that’s what he said anyway.  Alongside this he has been lifting his head and shoulders off the bed as if he is trying to sit up. 

It is fair to say he has been unsettled all week with his trachie pain, then removal, bowel pain and then bladder infection, all of which inhibit his ability to sleep restfully.  Despite this he still takes strides forward, as opposed the the baby steps I keep speaking of.  The concern being that too much stress on his healing brain and fatigued body now, can have a huge impact on progress in the long run.  Rest and sleep is really so important at this stage and something I am focused on trying to ensure is achieved as much as possible.

Today saw some good signs with his voice and he has been making some quiet mumblings and is trying incredibly hard with the speech therapists to engage his voice in humming and talking.  They have been really impressed with his efforts.  What a difference it will make when this happens.  I am sure it will come, but like all in this process, it is nothing if it is not the ultimate test of patience.  Neither of us have been particularly good at this skill, but there is no side-stepping it on this journey.  “Carrying away small stones” is a very apt description of the mountain Darryl is beginning to move.

Having said that, his physio told me today that in all the years she has been doing this she has never seen the sort of progress Darryl is making.   That was heartening to hear, but it is important to remember that progress for someone with traumatic brain injury of this degree is seldom anything but painfully slow.  So degrees of painfully slow is still a test for all, not least Darryl who is slowly breaking free of the chains of this injury.

Darryl, these days will be etched into my mind forever, but I hope that the memories of pain and frustration you feel each day will fade away as the ground you recover becomes more friendly to your body and mind.  Your strength is unquestioned, but mine struggles as I sit on and watch you calling on it every hour of every day.  I wish I could do more.  I wish I could take the weight off your shoulders.  I just wish I could.

Keep passing the test of you Darryl.

Dad

Wednesday 10th – Thursday 11th June

Published on 12 June 2009 in Progress. 17 Comments

I hope missing a day hasn’t caused too much concern to you all.  I know how so many of you are following us along and are a part of this journey too.  Unfortunately after a couple of big days I got home last night and thought I’d just have a wee lie down and fell into a deep sleep.  I woke around 9.30 and crawled into bed.  I am not normally someone who needs much sleep.  Well What I should say is that over the years I’ve got used to having bugger all of it, but there has been a couple of times over this past seven weeks where I have just hit the wall.  Yesterday was one of them. 

Anyway, to more important matters.  Darryl is feeling much better now the trachie is out and he is back at rehab, however he has been having trouble with pain in his lower stomach.  I have struggled over the last two days to try and work out what is going on.  I thought it may be a stomach ache from constipation but that was remedied and the pain increased.  Process of elimination had me feeling it could be some sort of urinary tract infection. 

I don’t know much about them, but by way of body language, finger signals and observations it seemed more and more apparent the centre of the pain was originating from that area.  My suspicions were heightened at physio when after explaining some of the symptoms she suggest that it could be a possiblity.  Anyway without wanting get get too descriptive about this it was confirmed tonight that he did and he is on antibiotics for it and some additional pain relief.  What a relief to finally get to the bottom of it.

Last night when I left I was so frustrated and upset that I couldn’t seem to pin point the issue with his pain.  I feel so utterly helpless and to be honest feel that I am letting Darryl down if I can’t be there for him by getting to the bottom of his pain or discomfort.  I sat there yesterday just watching him trying to pick up on his body language and as I sat at the end of his bed he raised his left arm above his head and with great control used his fingers to raise both eyelids so he could see.  He raised his head off the pillow looked straight at me.   I could see the pain, frustration and anguish in his eyes as they met with mine.

While the action itself is a remarkable indication of how far he has come, the  sadness of looking at my son, a previously Greek God-like teen with the world at this feet, reduced to having to lift his own eyelids with his one good arm so he could see where his Dad was, just broke my heart.  It was all I could do not to just burst into tears right at that moment.     

It is so hard sometimes not to just melt into tears of sorrow and hurt.  Yes he is making great progress considering.  Yes he is still here.  But there are those moments when all that I am as a father is torn at the seams in the sense that no parent ever wants to see their child so far from the person you know them to be, unable to  just make it all better.  I am not meaning to beat myself up over it or feel the slightest bit of self pity.  Not at all.  I’m just being Dad, who wishes his son didn’t have to take this particular road.

The bottom line is though, he is on this road and most importantly it is leading back to all of us.  Like any road, sometimes the twists, turns and potholes will make it uncomfortable, but nonetheless it is still a road and it leads to the destination which is what we are focused on.

This afternoon when Brenna came back after Catherine and her had returned from up North where they had gone back to say goodbye to the kindy kids, Darryl opened his eyes for her and started to make some sounds.  It appeared to be monumental effort for him to get sounds out but he did, which brought utter joy to Brenna and giggles of delight. 

Just a day ago Catherine had rung to say that Brenna had had a meltdown (understandable given the stress and changes to her life also) but mostly because she wanted to come back and see Darryl and hear his voice.  She was sobbing uncontrollably  because she said she couldn’t remember what Darryl’s voice sounded like and she wanted him to talk again.  In the end she decided that she could hear him on a video that we had taped last Christmas and she thought it would be good to play Darryl the video as well so he could remember what he sounded like himself.  Amazing!

So having decided that she settled down.  It was all the more significant today then when she arrived and Darryl made sounds that was as close to Darryl’s ‘normal’ tones as she could have hoped for.  It was pure delight watching the happiness on her face and seeing Darryl looking at her as she giggled with  joy.

Physio was very good again, and again he did more than the last time and is getting more movement in his legs and control over his left arm.  He has had botox injections in his right bicep and right calf to stop the muscles pulling so tightly so we can stretch them back out as the botox stops the nerves in the muscles firing for two to three months.  With one of the injections he let out a loud “argh”!!! which was terrible, but great all at once. 

There will be much more to report tomorrow, but I want to thank you all for your words of encouragement.  It is hard to read them to Darryl at times  without shedding tears myself, but they, and you are an important part of his healing.  My sincere thanks to you.

Darryl, you have been having your ups and downs, but you are still heading in the right direction.  The courage you show is matched only by the silent determination that lives in every breath you take.  I walk alongside you in constant admiration of your unquestionable character and will to succeed, through this and no doubt anything else that life might throw at you.

Love you always.

Dad

Tuesday 9th June

Published on 10 June 2009 in Progress. 20 Comments

….And then, in a blink the trachie was gone. 

After a number of days on a trachie weaning regime, today Darryl was taken back to hospital to have the trachie removed.  This process was going to happen at the rehab, but to expedite the matter and ensure safety we went through to Auckland Hospital to have this procedure done and the monitored for 24 hours.

I rode with Darryl in the ambulance, feeling every single pebble in the road as we went.  If anyone has the inclination, I think there is millions to be made for the person who can invent a suspension system for an ambulance that actually works!!  When we arrived at the hospital it was with a feeling of disconcerting unease that I entered the halls of the hospital.  This heightened as we exited the lifts to the part of the neuro ward where I first entered the critical care ward 6 weeks ago.

Strangely enough, the tightening of the chest and twisting of the stomach that became part of my daily routine while Darryl was in hospital, subsided quickly as the realisation that Darryl had come so far since those horror days and as a result, fear had drifted away to a large extent.   As if to test myself, as we wheeled Darryl past, I looked straight down the hallway to the entrance to critical care (something I couldn’t do for the four weeks Darryl was in hospital)  and I was pleasantly surprised to feel nothing but relief.  In fact even a little joy, as you would feel if you had achieved a goal.  I savoured that little moment, and gave Darryl’s hand a little squeeze, which ironically was all he was able to do to me to communicate his fight for life was in tact while he was in that ward.

As we got to the HDU I found myself wanting to gather staff around to see just how far Darryl had come.  It was an odd feeling, but quite nice at the same time.  Almost like a high school old boy coming back to the school and visiting the staff room to share in life after graduation.  Holly, his occupational therapist and Anna his lead physio along with a couple of nurses came to visit and were just thrilled with his progress, something they of course have also been responsible for.  Another few moments to savour.

In any event the trachie removal was very underwhelming and once he had the whole in his throat blocked up with some small bandages, Darryl made his first tiny murmurs.  Nothing discernable as actual words of course, but bloody good enough for me!  He signalled with his thumb he was trying to talk and as the next hour or so passed his murmurs grew louder and more purposeful.  Hopefully this is the beginnings of a talking recovery.  I’m sure it will be.

Brook, who came to see him also and I shared a few laughs with Darryl and it wasn’t too long before he drifted off to sleep with a few leg stretches and then we were treated to him snoring!  What a great sound.  Just to hear his normal contented snore was so satisfying.  He was resting like I haven’t seen him before when I left the hospital at 9.30 pm.  Bloody great really!! 

The other highlight for the day was when he got a surprise visit from friends from up home, Dave, Darcy and Ken.  They were down with the Taipa Area School first XV and them and two of the players from the team came to give Darryl a first XV shirt.  Darryl was asleep when they got there, but woke hearing their voices and once I raised him up in the bed he held his head up, opened his eyes and shook the hands of the visitors as best he could and gave a series of good thumbs up to their questions.  He proudly took the shirt from Dave’s hand and even gave them a wave as they left the room.  Another special moment and yet again a step forward in his eye opening capacity.  Thanks guys, I know it meant a lot to Darryl to have your support.

So another good day and a really positive one in terms of the trachie removal which was smooth and no doubt has removed a lot of the pain and discomfort he has been feeling.

Darryl, you have come so far from those early days that were filled with fear and uncertainty.  Each step forward you take gives me further belief in you and the depth of character you possess.  The test of you is one you pass on a daily basis, without faltering, without hesitating, without question.  And now without a trachie!   

Nice one mate.

Dad.