Bedside News PDF Print E-mail

31st March, 2009

I'm writing this from my bedroom at Station Street, Bangalow, with the rain falling outside, Clover playing with a new toy which just arrived from Richards sister in the UK, and Richard on looking at rock videos on his laptop in his bedroom... everybody is content, relaxed and most importantly, we are all HOME.

 

29th January, 2009

This is an update direct from Richard via me (Greg Cromwell). I am on skype with Richie in Beinleigh and this is what he has to say. "It's me and Star hanging out in sunny Beinleigh. Kylie and Clover have come home to Bangalow and are living at our temporary home on Station Street. Clover is starting her first day at Bangalow Primary School tomorrow and is very excited about it. Kylie will be getting the temporary house in order for my return some time this year. A big thank you to everyone who has donated their time and expertise to make the Station Street house possible (you know who you all are).

cheers--Richie 

 

30th December, 2008

 Pool Side News. Sitting at the Balcon's with Richard and Andrew Bleakley talking about the New Year and what to do with this wonderful website. We have asked Santa (aka Brad Baker who hosts this site) to upgrade to Joomla 1.5 in hopes of making updates and adding pictures easier for Kylie and soon Richard. 

Kylie, Richie and Clover will be in Bangalow till January 6th. Damian will be arriving on January 1st and will be heading up the spiff up of a house in Bangalow on Market Street where the Allens will be living while their house is being built.Image

All the best.

 

 

22nd September, 2008

What an amazing few months it's been...and a long time as usual between postings…. But here I am again, typing up a storm, feeling happy with what’s new and improved in our world.

Firstly, in the last couple of weeks, the insurance for the building site was approved, colours chosen, tradesmen booked in, and the Allenville home of Bangalow is underway!  Mick Hartigan has been phenomenal in all his organising and we are forever grateful… and to think that the concrete slab will be laid in a matter of weeks is very exciting for us all!  We will be having a "slab party" when all that is done so we'll keep you informed!  If anyone local is able to offer any help or support through the building process, please contact Michael Hartigan This e-mail address is being protected from spam bots, you need JavaScript enabled to view it or 0403 133 445 to discuss plans etc.  

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It looks like we’ll hopefully be moving back to Bangalow sometime through next year.  So, Richard, Clover and I have recently attended an interview for a place for Clover at a small Catholic School just up the road from where we’re living in Beenleigh… she was accepted – yaaay!

Richard has been powering along at WALK ON, it's been amazing to watch his progress, and all very positive.  The progress has been absolutely fantastic.   Not anything that anyone else would notice necessarily, but his core strength, arm and upper back strength is improving weekly, and it’s  fascinating to watch the trainers working on the parts of his body which no  longer respond.  We feel so lucky because not only is WALK ON in its first  year of operation, but that we’re in Brisbane (or near enough to Brisbane)  and therefore able to access the program.  It’s  quite meditative – the WALK ON approach, and while the trainers are working  his legs, they ask Richard to focus on his legs and feel and imagine them  moving.  The aim is to find different pathways to get the messages to  various parts of his body encouraging it to move.  Quite fascinating.   I continue to be unbelievably proud and in awe of Richard on a daily  basis as I watch him continue to adjust to his injury in such a positive way.  Some of the improvements are very small - but each one makes a huge impact on all our lives.  He's feeling great, looking great, and is really positive about life in general.  We are so lucky to have him in our lives.

Clover is great, enjoying pre-prep (and enjoying these school holidays even more!) and has had lots of "dad" time lately, as he's hardly been in bed with UTI's or pressure areas which he was so plagued with the first four months he came out of hospital.  She's a very confident five year old, and very chuffed with her new kitten  “Trouble” and still having lots of fun with Star. 


Fundraising:  The last big event was the  Sportsmens Luncheon, photos etc will be placed on the website as soon as i get a chance, and also information on facebook, but the great news was we were able to attend this one!  It was another huge success and so much fun!


A couple of months ago was Richard Allen Day,  where all rugby clubs around Australia (and endorsed by the Australian Rugby  Union) were invited to run some kind of fundraising event at their games.   Anything from a sausage sizzle, to gate takings, to who knows what else  – but the rugby clubs from all over the country who got involved were very supportive, which we so appreciated.  Richard Kelly did an awesome job in getting that one going, and hopefully it will be a yearly event. 

The Pete Murray concert which has been talked about and hotly anticipated has been postponed again, no date yet, but we're hoping maybe November?  We’re all looking forward to that, and will be having a few friends  coming over from NZ to be part of it.

Clover and I talked Richard into trying “buzz” on  the playstation and so we have a new hobby – the three of us can play together  (we’ve adapted Richards buzzer and he uses a pointer from his mouth to push  the buttons) so we’re laughing and having a great time (he’s soooo competitive  though!!!!) and we’re all so happy to have something else that we’ve found we  can do together.  Magic.

We finally got Richie’s laptop and I’m  currently installing the voice recognition software on it and setting it all  up so he can use it easily, but in the meantime he's tootling around on it and enjoying facebook and cruising around the world wide web.  Hopefully we'll have skype working soon and can communicate with friends and family more easily (and cheaply!) through that.

Oh, and one last very positive thing.  After a six month wait, we've finally had the front door installed, so at the push of a  button, Richie can now enter and exit the house on his own, and if he's bed-bound can see through a camera who is at the front door, and choose to let them in.  Unreal.  It’s a huge deal for us having this door – means he's now far more independent than he has been since his accident.  Now all I’ve got left to sort out  is the mobile that he can use, once he’s hooked up with that and can be out  and about on his own but able to communicate in case of any problems, we’ll  all be much relieved.  So far my extensive research has turned up NO  voice recognition mobile phones, but I have been trying out lots of different  options – and if any of you know of anything, please let me know!

 Spring is here, and it's absolutely beautiful.  We have some kiwi friends staying at the moment, and not only have they been incredibly supportive and helpful around the place, they've also all been interested in learning how to put Rich to bed etc and that has been a huge help.  

Have a good week everyone!

Kylie Richard Clover Star & Trouble (and the four fish - bluey, tigger, rabbit, and the new unamed as yet - sucker fish)

 

 

 

30th June, 2008

Beenleigh... Our life since hospital:

We found a dance class for Clover... a fantastic park nearby (Duck park) which has miles of paths for bike-riding and wheelchair cruising, and places for Star to swim, a fantastic bakery (The Just Loaf) where they bake the best bread we've EVER eaten, a great pre-prep for Clover where the teachers and parents are happy to help us out if anything happens, a good DVD library, friendly neighbours behind us (also in a power chair), and mostly wheelchair towncentre for us to all walk/wheel around, local Beenleigh markets, and plenty of free family fun days and activities in the area. Not to forget, a lovely and understanding Doctor, a great counsellor, nearby podiatrist for Rich, and all in all - a much better experience than any of us were anticipating. 

Here are some pictures of our lives... Rich and Clover insdie the house, Clover asking for autographs at the Beenleigh pantomime, Stars lake, Richie and Star relaxing at the park, Clover and Rich cruising the streets of Beenleigh, 

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Part 1:  30th May, 2008

AWESOME!

Just a quick bedside news to talk about Richards achievements since he started WALK ON.  It's been amazing watching his progress, his strength building, stamina for sitting in the chair - it's inspring to say the least.  His trainers have both been trained at PROJECT WALK, and it's so different (their approach to spinal rehabilitiation) compared to anything we've seen before.

 Active ImageFor the first time EVER I have been able to upload photos which we took last week, (Thanks Richard Kelly and Jodi!) so I will be able to upload regularly now.  The photo above is one of the trainers working his legs and shaking out his spasms for the warm up.  On the right you can see Clover the helper, she's amazing at helping hoist her dad and she really enjoys watching his progress at the gym.  Below, showing more work on his legs etc.  There is a good video on the PROJECT WALK website talking about WALK ON and it's well worth a look if you're interested.Active Image

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A few exciting things have happened since I last wrote.  The Bangalow Billycart Derby was a highlight for us all, leading the parade down the main street with all our friends and support team behind us was quite overwhelming and so lovely to get welcomed back to Bangalow in such a way. 

Winter is proving difficult for Richard, who is still unable to control his body temperature, but with heating in our bedroom in Beenleigh he is happy, and whenever there is a peak of sunshine through the clouds he is outside soaking it up as much as possible. 

We are starting to research further therapies and if anyone wants to let us know what they've heard about, or have time to research a little, please let us know.  Also, if anyone took photos at the Billcart Derby we'd be most grateful to receive.

Have a good week,

Kylie Richard and Clover

 

Part 2: 4th June, 2008

AWESOME!

Was able to take some photos of the most exciting thing I have seen in a long time... Richard up in a walking machine.  He was secured in the machine by his knees and stomach - so this is a real testament to how hard he's worked on core strength enabling his balance to have improved beyond recognition.  I am holding his shoulders as he felt very unsteady, but it was so exciting to see him at his full height after 14 months sitting in a chair, or lying in bed.  The WALK ON trainers couldn't believe how tall he is! 

 

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 Hi to all those who were able to attend Saturdays shindig, and thanks for being part of something special.

It was an awesome afternoon!

We had a really fantastic time, it was great to see the house plans on the fence, enjoy the music of DJ Hunter out the back of Gladys’ combi, catch up with old friends and meet some new ones, snack on the Lions scrumptious bbq, drink the Bangalow Pub’s kindly donated keg of beer, and feel part of the Clover Hill and Bangalow community which we’re getting so much nearer to actually living in.  And a big thanks to Carl for keeping the lawns mown!

Turning the soil (see http://richardallen.com.au/content/view/42/2/ for photos) was quietly emotional.  It’s a big step for us all, no-one could quite understand the emotional pull we all feel to Bangalow, and how desperate we are to be back there, surrounded by those we love, and our giant support network of friends. 

Our next adventures down home; the Joomla day this coming Sunday, and the Billy Cart Derby the following weekend.  Yaaay!

In the meantime, Richard started his intensive physio programme “WALK ON” this morning, and is absolutely exhausted now.  Located at Bowen Hills in Brisbane, he is extremely lucky to have secured one of the sought-after spaces to be part of this exciting project.  It’s based on PROJECT WALK in the U.S.A, and if anyone is interested in knowing more about it, head to http://www.scia.org.au/walkon

Cheers, and have a great day!

 

Finishing TRP...

The eight weeks of TRP is about to end (that's Transitional Rehabilitation Programme) which means we'll officially be on our own.  TRP has consisted of a nurse, social worker, OT and physio all coming to the house each week to ensure we're adequately set up for Richard to live in the home and get out and about.

It's been good - the social worker is fantastic, the OT was the same OT he had in hospital for his past four months, and the physio is a spinal specialist who is very into hydrotherapy - so we're right into that, and have ordered the gear so starting next week Clover and I can take Rich to the pool each week for his sessions.  There's a hoist etc at the pool, and it's a huge complex and Rich is very happy with it.  The TRP nurse has trained up the carers, and so all is feeling pretty ready for the end of TRP and the beginning of the next stage of our lives.

We had a wonderful visit from our friend Bridgette from NZ, and things are starting to feel more settled.  We've been having some great outings to the park, Rich is very happy and comfortable in his own chair - it's made a HUGE difference to how comfortable he is each day.  We're still awaiting his manual chair, which will probably still be a few weeks away.

Richard has been going to the gym a few times a week, and uses a machine there called the UpperTone which is fantastic.  He feels so strong after each session, and we look forward to seeing how his continual strength building will affect any gains he may get in his body.

We continue to hope that we'll be back in Bangalow by Christmas, so that's where our energies are focussed.  Having a van will ensure we'll be able to make regular trips down there once the house gets started so that we can be involved in the building.  Clover is very excited to be able to swing a hammer on site soon!   And of course get the kitten she is so desperately waiting for once we move in.

Now that TRP is almost over it means we'll have our time freed up for visiting friends, teaching Richard how to use the computer and getting out and about - we've been a little trapped by the constant goings on and non-stop appointments at the house.  

That's all for now,  

Kylie Richard and Clover xxx


Tuesday 25th March, 2008

I am a little apprehensive about writing a little bedside news... so straight up, I'd like to say, please don't send any nasty emails to me - if you want to read this, it's merely to get an update of where we're all at, in particular Richard, but as we're his family, it will be written about us all.  Please don't judge me for what I write, I only had a handful of "hard core" emails from people who were very critical and judgemental about how I'm handling it all, and literally hundreds of emails from people since I stopped writing bedside news (and long before) thanking me for my honesty and saying it how it is.  And for this I was (and am) very grateful.

Since having my own private blogspot it's been a great way for me to write and release, but I'm aware there have been some people missing out on news, and I haven't had time to write personal emails very often.  So, here I am, giving it another shot, at the request of others, but I type with caution!

Richard, Clover and I have been living together again as a familiy since the 18th Feb, 2008.  Coming out of hospital has been far more challenging for all of us, than anyone ever expected.  Personally, emotionally, mentally and financially.  In every way it has been a hill to climb, and while there have been many glorious moments, where we’ve been able to smell the flowers, there have also been so many challenges to face, which we do to varying degrees of success.  

Rich has spent more time in bed with pressure areas/red marks, than he ever did in hospital.  Partly this is due to new equipment and things like his pressure-relieving cushion not being quite right, and also new carers who have been in training.  Even things like adjusting to the weather, and not having a fully temperature controlled home has been challenging to get used to, especially in the first week Richard was home.  There are many areas that can be difficult, but I have to say - Rich has done really well.  He's managed to largely stay positive, patient, and calm, which under some of the circumstances, has really amazed me.  I am so proud of him.

The house we've moved to has been a little challenging, but we are both eternally grateful that we have a roof over our heads, that it's clean and comfortable, and pretty well set up for Richard.  And we know it's a stepping stone on our way back home to Bangalow.... we're eternally hopeful we can be home, and in our "own home" by Christmas this year!  Fingers crossed…

Clover has started pre-prep, which is really just like pre-school, and attends 3 days p/wk.  She loves it!  What a relief...  Her birthday was last week, and she's very chuffed with herself turning five.  We ride bikes or walk each morning to pre-prep which she is very happy about, and in the afternoons Rich and I ride and cruise (him in his power chair) to meet her and ride home with her.  Our dog Star is living with us once more, and I think we all agree that she is one of the highlights about living here in Beenleigh.  She's a wonderful dog, and we all enjoy being with her again.  There is a really great park nearby, and we take her there regularly for runs and swims.  Our dear friends who were looking after her did such a wonderful job, she was very happy with them and very loved – what more can you ask for?

We are lucky enough to have been granted 43 hours p/wk of "carers" for Richard.  Although it's really a double edge sword, as Clover and I both miss doing the more intimate things with him, and we only get a five hours a day in the house without carers, which is frustrating for us all much of the time.  When we return to NSW we will have substantially less hours of carers, so we must be grateful for their help at the moment.  Rich is going to the gym most mornings at the local PCYC (free for people in wheelchairs) and the carers help him with that.  He's enjoying feeling stronger after each session.

Tomorrow we go with a physiotherapist to a hydrotherapy pool, and if all goes well I will be able to take Richard for regular sessions myself and finally my Oceanic Bodywork training will come to good use... I will feel much more useful then, I am sure.  

Clover struggles with the carers in the house.  But we regularly talk it all through with her, and I know she'll get there in accepting of the new situation in time.  It's just another change in her life, and she often states, NO MORE CHANGES!  But, as I have to remind her, the only constant in life is change... and accept them graciously we must.

We've been very lucky with family to visit since we moved to Beenleigh... Richards’ brother and sister have both been over, my mum has been and is coming again tomorrow, and an old school friend of mine arrives on Saturday night for a few days.  The house is pretty tiny, so it's either the couch or Clovers bottom bunk, but they've been happy squishing in and just going with the flow of how thing work around here, and it's been lovely spending time...

We are now closer to Bangalow (only 30 mins closer - but that's a start!) so it's been a little easier for friends to visit.  Rich has been taken out by "the boys' to Sanctuary Cove, and a close friend (another Richard) has come up and helped out which has been a major bonus.  

We still await Richie's equipment arrival, but his very own power chair arrived last Friday and he's already more comfortable and in less pain than he has been since his accident.  He's still trialling back rests, but that's no drama in comparison to not having your own chair.  His manual chair is still to arrive, as are a few other things, but we have our (companion) beds, his hoist, shower commode and power chair and they are the biggest deal to get right.  We're happy they're here and able to make our lives a little easier.

The support from friends (both here and in NZ), our families and our beloved Bangalow fundraising committee has continued to humble us, we are eternally grateful for all the help in every way.  How do we ever thank people sufficiently?  I say - let's have a giant thank-you party in the not too distant future!

Until then, thanks again everyone.  Hope you all had a lovely Easter, and I would like to sign off with a beautiful poem "Friends are forever" written by our 11 year old friend, Chelsea Matthews.

Friends are not your whole life,
But without them your life is not whole.

Friends are always there for you,
When you're happy or when you're blue.

Friends they are like flowers,
Blossoming, using their powers.
 
Even if we go our own ways,
We will still be friends, it wasn't just a phase.

Our friendship will always matter to me,
Even if I have to, I will make a world wide plea.

I just want you to understand,
I will always be here to give you a hand.

 

Thursday 20th September, 2007

Wow.  Due to quite a number of critical emails regarding my last bedside news, I would like to confirm a few things that have perhaps not been written about, or at least not often enough.

Thank you for all the support and love from both our families.  We appreciate it very much, and feel grateful for having you people in our lives who love us.

Thank you for all the support from our friends.  We appreciate it very much and thank you for your continued support.

Thank you to all the nursing staff who have gone above and beyond and made our lives better at the hospital.

Sorry that the bedside news doesn’t have more news of Richards’ recovery, some weeks there is not much recovery to update about.  I have been asked by many people to write of my experiences of the whole thing, as his wife, and someone who is “bedside” every day.  I apologise to those of you who have seen the beside news as “rantings and hysteria” and been offended by this. 

For those of you wanting to read updates from Richard personally, please phone him at the hospital to talk to him directly, as at this stage he does not have extra energy/desire to dictate to me for personal updates and has been very happy with me keeping our friends and family updated on the website.

For those friends and family still wanting my personal updates, please let me know via email and I will find another way to keep you informed.

To those of you who wrote me such long emails expressing how you feel about the bedside news, thanks for taking the time to do that and share your feelings, it’s pretty hard to read, I’ve obviously been having a challenging time of late, but I can appreciate that you needed to share your views.

Update on Richard today; his sitting balance is coming along very well.  He’s continued to get massages from outside the hospital, which also are helping.

That’s all folks.

Thanks for everything everyone is doing, in every way.  We appreciate it.

 

 

19th September, 2007-09-19

I arrived at the hospital yesterday after a pretty full morning, cooking Richie’s lunch, getting a tearful Clover to pre-school (who only wants to be at the hospital), doing a “fat burner” class at the gym (very, very strange class, screams of “PONY” and “NOW SPIN IT!” from the super-camp instructor while we bounce around to Paris Hiltons’ song while the instructor shrieked “WE LOVE PARIS!!!”) and then pack up my little nana-trolley, to trundle up to the hospital in the HEAT.  It has hit Brisbane fast – 28-30 degrees each day, and spring has only just sprung.

Unfortunately, due to Rich being on the phone earlier that morning, he was bumped to the back of the queue for showering and getting up, so missed Occupational Therapy class, which I find very hard to get my head around, as he’s missed a phenomenal amount of physio/gym/OT sessions since his accident due to not getting up in time (not his fault) which all adds extra weeks on to his stay… very frustrating.  Anyway, so instead of Rich being up and ready to do OT with me, he was in the shower.  This is where my day went wrong. 

Of course I’ve seen him being showered a gazillion times, and I’ve done it many times myself, but when you’re not expecting it, and perhaps you’re feeling a little vulnerable and emotional already, and perhaps you feel like if you never see that hospital ward again you would never never ever miss it, and you walk into the bathroom after hearing your husbands’ “come on in, Moog” to find two exceptionally young and spunky nurses (1 a student nurse) washing your husband, it’s almost too much to manage.  My husband being naked with other women (spunky or not, it’s horrid) washing him is HIDEOUS and even though I know it’s now part of our new life, I don’t like it, it’s not what I would have ever expected to witness in my lifetime with Richard, and for me anyway, it’s definitely one of the worst parts of this new scenario…  but yesterday I just wasn’t prepared and it upset me, on top of being frustrated about missing OT, I have (we have all had) such a challenging few weeks lately, and I have been on the verge of tears so many times in as many weeks, but most often managed to remain strong and positive and cheerful, but not then….

I lost the plot, tears flooded, sobbing convulsions were threatening, and I was trying to find a corner to hide in but there is no privacy at the hospital.  So I thought to go upstairs and see our Social Worker who also acts as our counsellor, but naturally she was going into a meeting and was to be in and out of meetings all day, so it’s all just too much, and it feels like there is no one to talk to, no one to help, no one to put their arms around me and say “you are not alone, this is hard, but you will get through it…” and that is what I needed more than anything.  I knew at that moment that I couldn’t have Rich in the hospital for one more day… I’ve had enough.  I want him back.  I am tried of being on my own in the house, in our bed, I never even wanted a night on my own pre-accident, and now I’ve done weeks and months and I can’t do it anymore, I am sick of parenting on my own, and coping with Clovers breakdowns because she wants her dad home, I am tired of everything I have to do in the morning just to get to the hospital with everything he needs, I am tired of not being hugged by my husband, and watching him struggle with everything, I am tired of thinking about money, vehicles, where we’re going to live, what equipment we’ll need, clothing for Rich, doing normal home things like washing, cooking, cleaning, tidying, buying food, I don’t have the energy to do all the regular stuff let alone find it to do all the stuff no-one could even dream exists, and I find it hard every night to read books to Clover and be a good mum, I want Rich home to read her stories, I just want our old lives back, and I don’t want for anyone else to ever see my husband naked again and I certainly don’t want anyone to wash him.   This is just the shortened version of the list of what I don’t want anymore! 

And of course being upset when I'm at the hospital just highlights all the problems, like the fact that there is no counsellor/psychologist for us to see – not for Rich individually, or for us as a family.  When you have been/are going through such a life-changing trauma, surely the hospital would see that families are going to need help adjusting to the change in their lives forever?  Grieving for what you’ve lost, grieving for the future you’re not going to have, and the uncertainty of what lies ahead, grieving for your own life because never again will I be able to say to my family “let’s have a picnic at the beach today” without serious planning and thought to figure out how to do it if it can be done at all, not be able to go camping, or have a few drinks too many at a dinner party and crashing in their spare room, Rich needs a hoist, sling, shower chair, suppositories, electric mattress, the list goes on, and it’s like our life that we knew, that we chose to live, got cut off in mid-sentence, and shit oh shit I’m still learning new things every day of what it means to be a quadriplegic and his wife.  My beautiful and generous Aunty Tish and I had identified counselling as a need for me, and she googled/researched psychologists and counsellors, sent over the money, and off I went.  Well, a disastrous hour, while the woman kept tutt tutting “well, that certainly sounds hard” and “you seem to be coping extremely well” for the entire duration, and then said “that’ll be $110 thanks, and see you in a month for another session.”  “whaaat?” I thought, but instead said, “thank you, and what do you imagine I might feel like I would take away from this session with you”, “well, what would you like to take away with you?”, “well, I imagined some sort of coping strategies, or to at least walk away today feeling like something had lifted, or that I could see more clearly”, “well,” she said, “we can certainly look at that in your next session, but as I’m going on holiday I won’t be able to see you for a month” to which I WANTED to scream, “HOLIDAY!!!  HOLIDAY!!!  I DON’T CARE ABOUT YOUR FREAKING HOLIDAY!” but of course I just smiled, walked down the stairs, into my car, tears rolling, because somehow I imagined she would be able to fix something for me.  Not fix the whole situation, but just something.  If even a psychologist can’t help – who can?

Oh, and just so you don’t think that the hospital provide nothing by way of support, there is in fact a neuro-psychologist attached to the spinal unit, she is lovely, but only works 2 days p/w, and after waiting a month for our appointment with her (which was some months ago now), we had a great session (she understands and “gets” every single little part of being a spinal patient/spinal patients family) and I got the chance to cry and Rich to vent, for her to say at the end, “well guys, it’s been great talking with you and working strategies to help cope/improve your adjustment, but I can’t see you anymore because Richard doesn’t have a head injury, and I have to juggle my limited hours here with the spinal guys who also sustained head injuries.”  Great. 

Anyway, back to the original point of this topic of yesterdays tears, after a cigarette with one of the nurses (I gave up six years or more ago so what am I thinking?!) and attempting to compose myself, I finally got the chance to see Rich on my own (after the nurses took  an hour to get him out of the shower, dressed etc) so I could at least hug him, and he, who has been struggling mentally and emotionally at times this past month, was the super star man I married once more… he said, “kylie this is shit.  It’s as shit as shit gets.  I hate it too.  I want to come home too.  I don’t want you to be alone anymore.  But it’s not as shit as it could be...” etc etc and so together we were able to work through all the things that weren’t “shit” about our situation, and shine some sunlight on our lives once more… and basically it all came down to; he doesn’t have to move the electric wheelchair with his chin (as some do), he’s able to strengthen his muscles once more and now has the energy to work harder at this (brilliant), we have each other, (thank goodness) we have our little chicken (our highlight), we had our wedding (a very special day), and when we eventually get back to Bangalow we will have as much of our old lives back as we can get.  (yaaaay!)

And then the day just kept getting better.  Richie’s cousin Brett came in to visit, we both did physio with Rich and he had a major breakthrough in his balancing, cause enough for celebration, both him and Brett came home for dinner to surprise Clover (who went crazy she was so chuffed to have her daddy home for a few hours), cooked fish just the way Rich and Clover like it (because we miss fish soooo much with eating at the hospital all the time), and enjoyed a couple of drinks, and a few laughs.

I should have gone to bed when the taxi left, on a high, but had to fix up the house coz today I’m having yet ANOTHER inspection by the real estate (think the owners are going to put it on the market), folded washing, then checked emails…. Only to find that the fundraiser gala ball planned for the end of this month by fellow Bangalowdian Gai Hart-Hughes has had to be cancelled.  Devastation!  This was a stand-alone fundraising event organised by Gai not to go towards the building of the house in Bangalow like the rest of the fundraising, but for us to have a vehicle.  Every bit of research I’ve been doing on the modified vehicle, has all been leading up to the end of September, and we were so excited we would be able to order vehicle beginning of Oct.  The reason for cancelling sadly is due to lack of ticket sales and a problem with obtaining a license, which is terribly sad after so much time, effort, planning and preparation from Gai and crew (thanks Gai!!!!).  so I went to bed with a heavy heart, trying to figure out how I was going to transport my husband around, and how we were going to come up with the necessary money so that we can still go ahead with ordering the vehicle, so it might just be ready in January…  I am so desperate for a vehicle so we can be a little bit independent!

Anyway, I sign off on a positive note, because when I have a day like that (yesterday) the only way is up, and Rich and I managed to get our heads back on track with thinking of all the things we have to be glad about…. The love of each other, the love of our friends, the love of our family, the support of the Northern Rivers, the support of our home country, the support of the rugby community, the donations of food, money, massages, visits from friends and family from all over, emails of love and support, on-the-whole great nursing staff, breakthroughs in physio, the ramp being ordered for us to have at home, calls from friends, and back again to the love of each other and our daughter.  And hopefully soon, having our dog with us again.  Oh, and to celebrate the fact that Rich is having his first sleepover at home on Saturday night, we got Clover goldfish (rather than champagne!) and she’s called them Tigger and Piglet.  She’s very happy with them.  Nova, Blair and Renee and going to spend the night with us to help with hoisting etc and so we are all looking forward to a great weekend.

xxx
 

 

5th September, 2007

With Gerald’s departure the grim reality sets in… I am alone again.  It’s one of the most frightening feelings in the wee small hours of the morning, not just because I have always been afraid of being on my own, but because that’s when my thoughts and my reality work hand in hand to freak me out, and send me to a place I have to work extra hard at to keep my mind away from. 

During the day I cope extremely well, I am at the hospital, I am ferrying Clover to and from pre-school, I am being useful, I have a job, I am chatting with the other spinal patients, I am working Richards hands, setting him up with splint, tray and fork or spoon to help him help himself to eat, picking his nose, scratching his head, massaging his shoulders, wheeling another patient to the dining room if they only have one arm that works…. I feel useful.  What I see on a daily basis with the realities in all their glory of the failings of the medical system, the unfairness of the extent of some patients injuries, the unjustness of the lack of visitors or anyone to care for some of the patients, is so completely overwhelming that being part of the daily existence of life at P.A in the spinal unit becomes in effect something that actually makes me feel good, I am a part of something real and I am making a (somewhat small) difference. 

Then I leave in the afternoon, drive 10 mins to pick up Clover, feel overwhelming distress as I drive away from P.A, leaving my husband in a wheelchair where his body is in constant pain, can’t move itself, and can’t do much to ease its itch, or feed its hunger, but know I have only a few short minutes to compose myself, find some energy and joy so that I can greet our child with the same excitement and enthusiasm that she comes running at me with screaming “muummmmmmmyyyyy!” (often to be told, “you came too early mummy, I was still playing!”) which makes me feel so good inside, as the guilt I have often felt of her being in pre-school 4 days a week is phenomenal.  To go from being a full-time mum, a role that Richie and I both chose for me to have while raising our daughter in her early years, to dropping her off to be cared for by someone else – especially in these times of needing extra support, love and care, is an incredibly hard thing to do.  So to know that she’s happy, cared for, and her needs are being met, is fantastic.  But finding the energy is often a challenge, as I pick her up, and take her to the hospital each afternoon for time with her daddy. 

Her daddy is one of the most beautiful men you could ever meet…. I know this ‘cause I said yes when he asked me to marry him!  What I didn’t know, all those years ago when we realised we fancied each other, was that he’d be an incredible father…. Those who know us well, and those who only know us from seeing us in the street in town, know that Clover was always on his shoulders saying “giddy up horsie” as they’d gallop down the hill in Bangalow with her hair flying behind her.  Or playing “round and round” where he’d hold her torso and legs in a superman-type position, and he’d spin round and round as fast as he could with them both laughing and her screaming, with my shouts of “Stop!!!! Don’t do it over the concrete – do it on the grass!!” being drowned out by their fun.  They had so many different physical acts that they could perform in a 1 metre space, to show their “fans” their latest dare devil tricks, and Rich would always say “when she’s a famous and rich circus performer, we’ll have a big campervan and travel with the circus, and she’ll support us!”  He had big plans for her in the circus and all the tricks he was teaching her (she’s incredibly strong), but every now and then she’d whisper to me “mum, I’m not going to be in the circus, I’m going to be a mum!” and I of course would always tell her “you can be a mum, AND anything else you want to be….”

But what she wants most of all is for her dad to finish teaching her to climb to the top of the tree, and for her dad to have another running race with her – but not in his wheelchair, and for her dad to hold her hands so she can climb with her legs all the way up the front of his body, and up onto his shoulders.  She wants to do another monkey swing.  She wants him to be at home.  Watching her cope through all of this is, at times, quite unbearable…. The strength and maturity, the confusion at times, but never frustration or anger, is incredible in a four year old.  She cheers up the other patients, she has her “friends” in each of the different rooms, and cleaning staff, nurses, wardsmen, (not the Doctors – they choose to remain at their own “level”) and indeed the other patients families also, get a “hello” and a smile from her each day.  Her confidence is huge, and compared to the freaked out little girl who began her new life at P.A just four and a half months ago, who was angry anytime a nurse wanted to talk to her because she just wanted them all to go away so she could be with her dad, she has come an incredibly long way. 

I am often proud when I watch her on her “visiting rounds”, but also often incredibly saddened that this is the life our child now has and she misses her friends in Bangalow terribly, so much so that the helicopter ride on Saturday afternoon departing from the game was devastating for her because it meant leaving her friends.  This new life has been thrust upon us all, and as time goes by it becomes more and more real, that things aren’t moving as quickly as we’d hoped, that the “miracle” recovery that we all knew Richie would have, hasn’t happened just yet…  this week I was due with the first of the two babies I have lost this year.  I have struggled more than I ever imagined I would, the realisation that it’s actually good that both those babies didn’t make it because my daily challenges would have been far greater being pregnant and trying to give birth while Rich is in his current condition, but knowing that Clover might be “just Clover” forever, truly breaks my heart.   She asked me yesterday “why are the Cromwells so lucky having three kids, and we have just one – me.  We aren’t lucky mum.  When will our baby come?”  How can I answer that?  What can I say?  Having a sibling to share her life with would, for me, be of some comfort.  Having another baby was something we wanted, and although I know it may be a possibility somewhere down the track, I would be caring for this child very much on my own for the most part of it, and at the same time, caring for Richard.  A daunting thought, and one that sometimes doesn’t feel very realistic. 

Over the past month, Richard has said some things that have worried me at the time, but I have put them aside as just things he’s needed to get out, or comment on, but that they’re not worrying him too much.  Largely that’s because we’re often distracted with all the constant goings on at the hospital, or the many visitors we’ve had at weekends, or whatever…. But some of them are becoming more frequent, and to me, worrying, like for example, “I’m just sitting around all the time.  It’s all I do, just sit around.”  We all know that Richard has never just sat around.  He’s a doer.  He’s not lazy.  Never has been.  He’s active, social, and when I’d be sitting down having a chat with friends at a barbie, he’d be taking the kids for a walk around the property, playing a game with them, or cooking the barbie.  He’s not used to just sitting down, he never did it in his job, he was on his feet, moving through the day.  Now he is never on his feet, he doesn’t move anywhere on his own without the big hunk of metal and plastic and rubber which is his constant companion, and the frustration is really (I believe) starting to make itself known. 

He’s started getting frustrated with his clothes, yes even clothing can cause you stress in our new world!  He’s so tall, even pants are all too short, you’ll notice when you sit down that pants which are the perfect length for you when standing, pull up to show your (c)ankles when sitting, and Rich can’t bear this.  There’s a guy who arrived in the spinal unit yesterday, who is starting up a business called WHEELCHAIR PUNX making clothing for wheelies.  He’s been a complete quad for 2 and a half years now, and is just back in for a few days to have a few operations on his arms.  His clothing line won’t be ready for a while, but we’re desperate – I have told him!  I have tried to just listen to the positives he has had to tell me, and focus on things like his new business ventures and ideas for future clothing for wheelies…. But the other side he has to tell, is depressing to say the least.  And it’s one I’ve heard over and over from old patients, from social workers, nurses, aaah, the list goes on, and each time I want to scream from inside “shuuuuttt uuuppp!!!” as they tell stories of losing friends who don’t want the hassle of hanging out with someone with high needs in a wheelchair, of relationships breaking up because spouses couldn’t cope with no longer being cared for physically or emotionally by their partner because coping for each person is a job in itself and human nature tells us to look after yourself and that’s where I guess “flight or fight” comes in… but luckily I’m in it for the long haul (in sickness and in health, for richer for poorer) and I’m here to fight if need be, to scratch, to massage, to pick, to listen, to laugh, to share, to care.  But it can get depressing at times in the wee small hours on my own in bed, thinking of the future that is ahead of us, the future we would/could have had before us, the carefree nature of our very existence pre-accident, of all the times he asked me to climb Mt Warning with him (and I never did), of the expectations on me to do the phsyical stuff with Clover, of the expectations on myself to eat properly, do the shopping, clean the house, do the washing, correspond to emails, letters, phone calls, work out the finances, research anything spinal, clean out the car, get it serviced, research modified vehicles, research ways for Rich to be able to continue his business and make it happen fast so that he can start using his brain, research equipment needs, gadgets, ways to help Rich be more independent, keep his spirits up, tend to his every need putting whatever I was doing aside because he gets frustrated, apply to Centrelink for every penny I can scrape from them, remember to pick up the ramp each weekend to take home, fit it in the car, pay the rent, pay the bills, range his legs, massage the fluid out of his feet, prepare his meals, laugh with our daughter, read her stories, the list goes on and on and the pressure I feel to be all things to my family is weighty, and sometimes I am not sure how I will make it through a day. 

One of the more annoying aspects of my personality is that when things are tough or hard, I retreat rather than reach out.  I stop answering the phone, I don’t reply to emails, I ignore writing bedside news, or I write what I think people will want to hear, and leave out the nitty gritty realities of what is going on…. And what causes me stress on a daily basis, on top of everything else.  Sometimes I think, “if I could just have a big cry with a friend, I would be strong enough to go on….” But our friends and family are a long way away.  And the ones who are here have their own lives which carry on, and I know I distance myself for fear of becoming too needy.  When friends/family are staying, for the most part I am grateful for their help, entertainment and support, and it keeps me buoyed up and I enjoy their energy.  When they leave I realise I haven’t got my big cry out AGAIN, and my world starts to get heavy again.  There are so many causes of stress, from the totally crap social worker who was great at being a counsellor but not great at organising anything, hence we are behind in applying for certain things which we couldn’t do without her, to Richie’s Occupational Therapist who left on Friday which is actually a great thing as Rich was finding OT very depressing, when on Monday his new OT lady (Michelle) started working on his weaker arm and he achieved more in that one session with her than he had in four months… it’s an incredibly frustrating world we live in now, and when we realise that four and a half months have not achieved as much as we’d have hoped because the people working with you/on you are crap, is enough to make you scream, cry, or shout “hallelujah!” because finally now we have a brilliant social worker, and potentially a fantastic OT worker… finally – something good has happened at P.A! 

Well, that’s enough bedside news for now, it’s a marathon read, so if most people gave up after paragraph three, I wouldn’t blame them!  Sometimes I wonder if anyone reads this at all… then I get a prod if there’s been nothing on for a while so I know there are a few of you out there…..  hope you’ve been enlightened into what reality I’m living, and now you will see that when you say to me, “Kylie you’re so strong, you’re managing so well!” that I’m actually not.… that I have a long way to go.  I am alone, I am overwhelmed, and I am trying to hold it together for the sake of my husband and daughter who need me. 

To the rest of the world out there, never ever ever take for granted your life, your legs, your body, your children, your health or your friends and family. 

We all spend so much time thinking of what’s not right in our world, and need to spend more time thinking of what’s good in our world.  I will tackle today head on, and remember what I remind myself of at some point each day;

I still have my husband, I’m lucky.
I have my health, I’m fortunate.
We have our daughter, we’re blessed.
And on top of all this, we all love each other.  And love is what gets you through each day.

Kylie xx


 

 

 

2nd September, 2007

Just a wee note re. friends who have donated money to us through the website, or by going into the Summerland Credit Union in Bangalow.  You can be sure it has all gone to the Fundraising Account, however, due to not having been able to receive statements until very recently, we didn't know that we had so many "good fairies" out there helping us out.. so, to the friends who have generously donated cash, please know that we didn't not thank you because we were lazyn or hohum about it, but because we had no idea that you'd done it, and it's been mind blowing to read through the account info passed on by the Rugby Club and see the donations and the lovely notes that have been written alongside the deposits.  thank you so much!  Your $10 or $100 or whatever fantastic donation will all go towards the house in Bangalow, which - exciting news! - we received plans from Malcolm Cummings (Architect) yesterday at the game, and so it means it's all really happening!  we're really going to get to move back to Bangalow one day, and we're really going to have our own purpose built house!  Thank you!!!!!!!!!!!!!!

We can't wait... four and a half months is a long time, and I miss having Rich at home terribly.  Clover and I are both ready to have our "normal" lives back again... we have a full and good future ahead of us and we're ready to have him home.  

We had a lovely day at home today, Richie a little tired after yesterday but happy to come home on Fathers Day (Clover gave him spokie dokes for the wheels on his chair!) and have a barbecque with friends Andi and Jesse, and Molly and Louise, and of course Richie's brother Gerald - it's been awesome having him stay.... Clover asked if he could please never leave!  He's helped me with a lot of stuff around the house, fixing things etc, it's been fantastic.  He even hangs out washing and folds it!!!!  Vanessa - you've done well! :-) 

Granny and Tisha... it was so special having you here last weekend, and thanks for all the help with Richie while you were here, working on his hands, feeding him, cooking for us as well as trying to help me find other forms of support etc.  I miss you both very much, I sobbed so much when you left, and Clover thought that was very strange and said to me, "don't be sad mum, if you really love them then they are in your heart and you can see them anytime you want in your dreams," same as what I say to her about my dad!!!  It's incredibly hard not having family around when you need them the most....  Thanks for making the effort to come - very much appreciated.

Well, that's all from me, hopefully Saturday will keep us buoyed up for a long while to come, we're all still on very much a high, we are feeling very spoilt!  

Here's to a positive week, and remember - hug each other often.  

Kylie xx 

PS, thank you FRESCA in Bangalow for your fantastic food delivered beautifully to us at the game - very much appreciated!

PPS, for those looking for practical ways to help, home cooked frozen meals are still the best thing possible, Rich has had enough of hospital food (four and a half months - fair enough!) and is eager for me to bring lunch and dinner in most days... I am struggling with this a little, so the home cooked frozen meals which I can quickly defrost and serve up with a fresh salad make my life that much easier to manage!  

PPPS, just a reminder when visiting Richie that sitting beside him doing nothing but chatting is nice, but not very helpful.  To keep his fingers from curling permanently i work hard on stretching out the tendons daily, move his legs and arms to keep joints supple, massage his neck and shoulders as they ache permanently, and just for pleasure - he loves a head scratch!  He is not the type of person to ask, as he doesn't like to put people out, but when people offer to do something, or ask "what can I do?" he is absolutely chuffed, and would never turn a shoulder rub down!  So, please remember, a chat is nice, but helping his body is the best thing you can do for him.  And you can always chat at the same time!!!!  Furthermore, I really appreciate the help.  

1st September, 2007 

You can be sure, if I haven't written bedside news for a while, it's because I have nothing positive to write.. we have had an incredibly challenging few weeks.  I have struggled.

BUT tonight i write (with a few wines down the hatch!) that we have just (as a family) had one of the most incredible adventures of our lives.  Today we went by helicoter with Clover, Rich, Kylie and Gerald (Richie's brother) to Kyogle, to watch the Bangalow Rugby Team in the Grand Final - and they won!  it was an absolutely incredible day, glorious, fantastic, amazing. wondrous, brilliant!  We are all on a high and are feeling loved and cherished and important to our community... Bangalow and beyond.  Thank you all for bringing an incredible amount of joy into our somewhat challenging days.

Congratulations Bangalow Rugby Club.  Richie went out in a helicopter during your first game... and he was back in a helicopter (although joyous this time!) for your last and victorious game, thanks to the generosity of you all.  We're proud of you all for playing such a great game.

Thanks everyone.   And Katy Richardson - you are our shining star.

Clover (the biggest thanks!), Kylie, Richard and Gerald.  We love you all.

 xxx

 

Meltdown!!!

Hope you can help.... our computer had an Entourage (email programme) meltdown, and I have managed to recover everything prior to June 2007, but everything since - GONE.

If you haven't had a reply to your email/s please re-send, especially anything to do with landscape design software (Michelle Pointon and Matt Alexander) and anything to do with fundraising committee - I am a meticulous record keeper with folders within entourage etc BUT have learnt my lesson (again!) about backing up more frequently... 

Hope you can help - I have had a few frustrating hours working with this - but fingers crossed you'll be able to get me up to date by re-sending things if you can!

Thanks very much, oh, and by the way Richie is doing great. It was my sister Yasmiins' birthday (13 - a teenager!!!)  yesterday so we hired the van again and went to Australia Zoo - a great day out for all, the rain stayed away, but by the time we were driving back it started to get pretty crazy... guess you might have seen the news about houses and cars being destroyed by the winds/trees/rains??!!!!  Anyway, Brisbane (and so much of Australia) needs the rain desperately, so no complaints, just a good excuse to stay inside the hospital today and work extra hard in rehab.

Cheers,

Kylie :-)

Wednesday 15th August, 2007-08-15

It’s been a pretty hectic week… and (largely) very positive for our family.

My car broke down (AGAIN) last week, and it's REALLY difficult to get around a city you barely know, and with hardly anyone to ask for help from, but Clover and I did it - we caught buses, taxis and had a fair few frustrations, but Friday afternoon we went and picked up a Van and the week suddenly improved!

Sunday we went to BANGALOW for the day – the van we hired is purpose-built to transport wheelchairs ($400!!!!) so we could get down there, and it was worth every penny for the joy it gave us all.  Rich had to be up at 5:30am to ensure we were ready to leave by 9am, Clover and I arrived at the hospital before 7am to help get him out of there quickly, and we were off!  We visited Herb and Liz Elliott first, and were at the Bangalow Hotel by 12pm for the Rugby presentation luncheon (where I did an impromptu speech WITHOUT having had any wines beforehand!) and then spent the afternoon on the back deck of the Hotel with friends and our beloved STAR.  Rich was pretty overwhelmed initially walking into a room of 100 people (the luncheon), and felt like everyone was staring at him (which I guess they were!) but quickly got used to it, and it was a great afternoon.  Clover was like a piglet in cool mud on a hot day, Rich was like a boy who had just arrived home after a very long and tiring school camp, and I was so exhausted I just sat back and enjoyed seeing them enjoying themselves so much!  It's so nice to be in the company of friends... you can't even imagine how nice, until you're in a situation where you have very few around you, for a long period of time.  I was pretty nervous driving us initally when we had a trial run to our Brisbane house on Saturday afternoon – Rich had made me very nervous, and he is very particular!  But come Sunday and once we were on the road we had a great time, I’d made up some travelling CD’s, and I know that Rich was happy and comfortable because he slept a third of the way down, which is a good sign!  The trip back up not so good, he was absolutely shattered, and every bump in the road (that’s a lot of bumps over 2 hours of travelling!) ensured he was a very vocal “back seat driver” so it was a welcome sight when we arrived back at the PA and I got Clover home to bed.  Rich then spent all of Monday in bed, recuperating after such a big day, and then came home for dinner to see the Cromwells which was another great evening.

Tuesday was a Spinal Unit trip to the EKKA (Brisbanes’ big show) which was HUGE, and Clover had a day off pre-school so she could go with us, we had a fantastic time, she was very chuffed with herself – a chocolate dipped strawberry on a sparkly stick and a Hello Kitty show bag – Rich equally as happy with his Dagwood Dog, and me happy just to be out and about with my family.

Today is a public holiday in Brisbane, and instead of coming home as planned, Rich spent the day in the hospital pushing himself (having a workout as he puts it) around in the manual chair.  By the time we left (6pm) he was absolutely shattered, it was the longest time he’d ever spent in the chair and his neck and shoulder were extremely painful, but he was happy he’d done it.  We had some lovely visitors today also, but was especially great to touch base with Dr Nick (a member of Bangalow Rugby and also the Dr who was first on hand at the field after the accident) and his wife Dr Alex.   Good to talk with them about how many improvements Richie has had and continues to experience.  He is such a hard worker, very determined.  He manages to impress everyone!

There are many things we seem to miss out on due to either being in Brisbane or because of the logistics of figuring out how to get to something can be so complicated, and the thing that has been the most disappointing to miss was our dear friend Andi’s 50th birthday on Saturday night.  We were thinking of you Andi and I wish I was there having a dance with you!  You are one special person, and we are lucky to have you in our lives.  Look forward to seeing you on your next visit up, and giving you a big birthday squeeze!

We have a big few weeks coming up of visitors from NZ, my mum, Harry and Yazzy (who will celebrate her 13th birthday while she’s here), My Aunty Tisha from Wellington and my glorious Granny Joyce from Auckland, and Gerald – Richie’s brother.  We’ve also got a few friends up from Bangalow booked in, so it will be very nice, as it’s been a bit lonely up here lately and Clover and I are really looking forward to the action!

A reminder to all that there is a big ball planned for the end of September as a fundraiser – this one solely to raise funds for a vehicle for us.  The quote is $95,000 (yes, that's true - it's not a joke!) as unfortunately there is only one vehicle that Rich can fit in (height wise) and it costs just as much for the conversion as it does to buy the vehicle in the first place.  There are a few second-hand optons we've researched, but it's certainly not the best choice due to his neck pain etc, so we're setting our sights high (at this stage) and using The Secrets' "law of attraction" theory to hopefully get us in the van we want/need.  We are so keen to get a vehicle as it will free us up so much, to get out and about, and Rich will also be able to get home for dinner as much as we want and we can go down to Bangalow far more often.   Aaah, the possibilities of what we can do when we’re fully mobile are endless!!!!

Also, we are nearly at the stage where we can sign off on buying the block of land in Bangalow, the fundraising has been unreal.  It’s just phenomenal the work that the Richard Allen 14 Fundraising Committee have done, and the donations from various people have all helped in ensuring our dream of returning to Bangalow and living in a purpose-built home is that much closer.  We may still be nearly a year away from the house being ready to move in, but at least while we’re living in disability housing in QLD after Rich gets out of hospital we will know that we are so much closer to our dream being realised – it’s great and exciting.

Thank you everyone for the support and love you give.  We continue to feel grateful every day for all the various ways in which we receive your support.

Kylie, Richard, Clover xxx

PS Chelsea and Shannon Matthews are now the proud cousins to Harry Hector!  (proud parents are Diane Robertson and Paul Robinson) but I knew the girls would like the mention!  Congratulations Di and Paul, may he be a great sleeper, a good feeder, and may he bring you as much joy as our wee girl gives us every day... we can't wait to meet him in October.  (hope it was OK to put it on the website!!!!)

PPS Congratulations to Amity and Rob on their wedding, we heard it was a very special day and you both looked fantastic.  We'd love to see photos sometime if anyone has any...

PPPS Congratulations also to Vinnie and Alex, and Shaun and Kirsty, I saw via the facebook website that both couples are also now married, and we wish you many years of blissful happiness and a multitude of babies to fill your homes with laughter and fun.

PPPPS To those of you who are asking how they can help... we need motivated people to attend the fundraising committee meetings on Monday nights in Bangalow, to help with upcoming events etc.  There's a small core group of people who are achieving fantastic things, but extra help is always needed, and if anyone has time and energy to spare, your help would be most appreciated.  If you are interested, please let me know by email This e-mail address is being protected from spam bots, you need JavaScript enabled to view it and I'll let you know meeting times etc.

PPPPPS Michelle Purnell, you are a superstar.  If anyone in Sydney is interested in helping out the Sydney Fundraising Committee, I can pass on contact details for Michelle or fellow star Adam Cohen.

 

Tuesday 7th August 2007

Here we are in August… and our supposed discharge is November, so time is ticking on and leaving time is drawing closer.  It’s exciting, yet scary at the same time. 

There are so many things in the pipeline… we’re applying for disability housing in QLD – that could be anywhere within an hours drive of Brisbane, and we definitely hope that would be south rather than north!  I suggested to Rich that we try a caravan and go cruising for a bit, but he though the disability housing option sounded safer!  Oh well, it shouldn’t be for more than a year, as fingers crossed hopefully the house will be ready and we can go “home” to the wee town we love.  Brisbane is actually a great city, as far as cities go, I highly recommend it, although the traffic and noise sometimes gets to me.  Has anyone noticed that in a city it doesn’t ever really get properly dark?  Nor is it ever silent.  Just that stillness is what I miss so much I think.  The properties we’ve been living on the past four years have all been so peaceful, restful, and silent.  Except for us that is of course!

We’re also researching power chairs, 4wd chairs and manual wheelchairs to consider what Rich will need when we move on from here.  Also, the OT department are trailing him with different types of modified cutlery, phone holders, pen holders, toothbrush holders etc, all to make Richard a little more independent and more in control.  Still in the trial stage at the moment…  he’s been feeding himself most meals (once they’re cut up) with a fork and I can’t tell you what a difference it’s making… the first meal after I’d set both him and Clover up, I sat back and suddenly thought “what now?!” because I hadn’t had “free hands” for so long, and Rich said “why don’t you eat now babe?!” and it was so lovely and such a shock that we could all eat together AT THE SAME TIME!  Aaaah, the pleasures in life are simple sometimes…

We’re aiming to go to Bangalow on Saturday for the afternoon, it was supposedly to watch a home game at Bangalow, but sadly the game has been moved to Red Devil Park in Byron (not the ground where Richie’s accident occurred!). The logistics of going for the day are not only regarding all the things we would need to make the trip, but also it would seem that hiring a vehicle is $400 which I believe is OUTRAGEOUS!  But worth it I believe.  It will be Richie’s first trip “home” in four months and I think he could do with drinking in some Northern Rivers air.

Rich has had a good week of working hard and making progress.  His stamina for sitting in his push-chair is building up, and he’s “trying out” a new one this week; they loan them for 7 days at a time, it’s light and he’s finding it pretty good.  He didn’t come home on Sunday due to being very tired, and said he “couldn’t be bothered with the rigmarole of getting there” as the whole taxi saga is pretty taxing to say the least, and certainly not a comfortable ride for him.  It will be a glorious day if and when we ever have our own vehicle!  Speaking of which, Gai Hart-Hughes (Bangalow) is hosting a gala ball with band, food, drinks and dancing etc to fundraise towards a vehicle for us… so if you’re around at the end of September keep it in mind.  It will be a glorious event no doubt – Rich and I have been to one of her balls in the past and a lot of fun was had by all.

That’s all from me for now, generosity from people from far and wide has been incredibly moving this past week, people we don’t even know have offered to help us with things (like the kids playground I want to organise at the hospital) which has just blown our minds.

Most exciting for Richie has been the arrival of the landscape design software which he is yet to learn, and then he can put it to good use as he has a few jobs in the pipeline, one of which is for the same clients whom he so loved working with last year in Ewingsdale.  Just to get his brain working again and his creative juices flowing will play a huge part in keeping him focussed, motivated and moving forward. 

Thank you to everyone for your help, support and love.  And in particular to the Richard Allen 14 fund FUNDRAISING COMMITTEE.  How you all manage to meet each week and plan upcoming events we will always be in awe of… thank you.

Kylie, Richard and Clover xxx

PS the songs that some people sent through have done wonders for me!  In particular, new theme song for the week has been my aunt’s contribution “I am woman hear me roar!”  although Clover and I are still singing (many times a day!) Pete Muray’s “Opportunity” and Rich just loves hearing our rendition!  He has suggested we sing it to Pete when he visits, although I prefer Pete’s wife Amanda’s idea of him singing it to us in person far more!!!!!!!!!!! (the nurses will go craaaazzzzy!)

 PPS the games we have been given have made a huge difference.  Rich and Clover were playing Guess Who at the weekend which was a lot of fun.  I am still trying to track down the pattern blocks, if anyone has any to spare, or has seen any to buy, please let me know.  thank you :-)

 

Sunday 29th July, 2007

Some weeks are so overwhelming and so challenging that I don’t want to write any “bedside news”.  It’s not that I can’t be bothered, it’s that I don’t want to fall apart whilst writing, and the last three weeks have been so hard that I have, on ocasion, imagined I might end up as a patient in the Mental Health Unit (which is directly beside the Spinal Injuries Unit so at least Richie and I would be neighbours!).  Also, I sometimes feel that if I don't have anything good to say, then I shouldn't say anything at all.  But I know that negative thoughts breed more negativity, and I know that it’s only positivity that will get me (us) through this journey, and without it, how can we expect to get great results, if we’re not visualising the perfect outcome… so, as it’s Sunday night, I’ll vow to wake up Monday morning afresh, trying to focus on all that is good in the world, and be as positive as I can possibly muster. 

Since the accident (3 and a half months ago now!) I have had “theme songs” going around in my head… a song for each emotional state, and they have really helped!  In the beginning, Bic Runga and “good morning baby” as well as Pete Murray’s “Better Days” stayed with me and carried me through, but the last few weeks Clover and I have really enjoyed “Opportunity” (another by Pete Murray) and it’s honestly helped a lot, and when I see Clover in the back of the car crooning “soooo ooo, oo oo oooonnn, you’ll see” I crack up and then she says “you know mummy, it really is my favourite song of all” so good on you Pete – I’m so glad to have a break from “hot potato hot potato” and the rest of The Wiggles songs!!!  Anyway, I was wondering perhaps if anybody wanted to email through their theme song to share with me (and Clover) as it might help take the edge off some days when I can’t even track down a little ditty inside my overwhelmed brain to hum along to.

This last week I’ve found myself trying to talk to my dad, asking him to help keep me strong and positive, and willing him to show me how to get through this and keep our family intact.  Sadly his voice isn’t coming through very loud from above, but perhaps he’s helping in other ways… lovely things have happened when I’ve least expected them to, like a beautiful letter to Richie from a friend, a treat by way of massage voucher to soothe my body and mind, a home-made game with handwritten instructions, a funny phone call, the list goes on, and with each smile on Richard’s face, with each laugh out of Clover, I am reminded that I am so incredibly lucky to have them both, and as a threesome we will stay strong for each other for the duration of this journey and beyond.  I am constantly reminding myself how lucky we are that Rich is still in our lives and has the will and determination to battle through each day.

So, perhaps now is a good time to update on Richards’ progress, as not all of you out there will be that chuffed with my long renditions of how I’m coping… so, more about Richard.  He’s tired all the time, he naps all the time.  Yesterday instead of coming home, he asked to be put back to bed at 10:30am and there he stayed for the remainder of the day.  Clover and Richie watched 2 DVDs in bed, and in the afternoon he slept for 3 hours while Clover and I went to a birthday party for Alice’s 5th b’day (new friend from pre-school).  It’s quite worrying for me that he’s so tired, but apparently even just sitting up in a wheelchair is extraordinarily difficult for a high-level quadriplegic (as Richard is) because of having only a few muscles to perform tasks that anyone using their whole bodies would use many many muscles to do.  He is pushing through the exhaustion to spend up to 2 hours each day in his manual wheelchair, pushing himself around the ward.  However, the fun days we had of a month or so ago – long lazy lunches at our house with hordes of friends and adventures to Southbank – are over for now, as his energy isn’t up to it.  No doubt it will improve in time, but for now, his naps in recliner position in his powerchair are taking a front seat.

The young guy Chris (16) who was in the bed beside Richard, left early in the week.  After an initial 2 weeks of paralysis, and being told he’d never walk again (he fell off a pushbike), feeling started to come back through his entire body to the point that (only six weeks later) he left the hospital walking unaided, so now we wait for a new room-mate, and hope that it’ll be someone fun.  I almost feel the need to advertise, (think Jane and Michael advertising for their dream nanny in Mary Poppins!)  because he really needs someone light and fun and enjoyable to talk to when we’re not around, as I get the feeling that boredom is starting to set in and that combined with the frustrations within the hospital system, the problems with temp nursing staff who don’t know what they’re doing in the spinal unit, and the lack of mental stimulation might start to take their toll… that said however, there are some really great guys (and women) in the unit who Rich has a good time with, and some of the nurses are absolutely brilliant, not just with Richard, but with Clover and I also. 

Damian, Jane and Zia are leaving Brisbane and our home on Tuesday morning, and while we will miss them all terribly, it’s little Zia and her hilarious antics that I’m sure we’ll talk about the most!  She never ceases to light up the faces of anyone she sees, especially the nurses and other patients.  Clover does too, for that matter, and especially on Friday afternoons when she comes into the hospital in her ballet dancing clothes as she comes in straight from dance class.  She then goes on to show anyone who will watch what she’s learnt that day, and it can be very amusing! 

So the house will be rather quiet and empty, and I will no doubt be a little hungry sometimes (Jane did an excellent job of cooking many meals!) but it’s the next stage in getting used to our new lives… and I will get used to being here on my own I’m sure.  Well, never on my own – the beautiful Clover (who insists on sleeping in our bed “just until daddy gets back you know mummy – and then I can fit a pillow in the middle of you two so there’s room for me!” is a great conversationalist and there’s never a dull moment when we’re hanging out.  Speaking of Clover, when we were in Bangalow last weekend, we walked into town (I’d left my car behind the night before as I’d had far too much vino) and as we approached the hill and looked down the main street into the village, she stopped and tugged on my hand, took a long and rather dramatic inhale of the air, and said, “oh mummy, you know that in my dreams, every night, I dream of Bangalow and I just can’t wait until we get back here… it’s been too long!”

Absolutely gorgeous.  We all miss Bangalow. 

Look forward to hearing about “theme songs” and hope our week will bring positive things to report in the next instalment of “bedside news”…. 

Hope that your during your week you find a moment to smell the roses, and many moments to hug your loves.

Kylie xx

 

Tuesday 24th July, 2007

Richard is still working hard each afternoon for at least an hour wheeling himself in a manual wheelchair around the ward.  His day is full on, there is not much "down time" and he puts a lot of effort and determination into everything he tries to overcome.  He has met some great guys in the ward, and they do make very amusing jokes at each others expense and have quite a few laughs.  Just in the time that he's been at P.A it's amazing how many guys have left the Unit, and headed back out into the big wide world.  Rich is very much looking forward to it being his time...

He is very tired a lot of the time at the moment and has many "power naps" at various stages during the day.  Even in physio and OT - he'll just turn his chair a little, recline, and nap.

Thanks to Katy for joining the fundraising committee... It'll be great to have your skills, energy and enthusiasm pushing for the cause!  The committee have been doing such an incredible job - their efforts go way beyond merely thinking up fun ideas of fundraising, they have many other things going on, and if there's anyone else out there who has a little time and energy to spare and could help it would be very gratefully received.  The fundraising committee meets on Monday evenings @ the Bangalow Hotel.  You could email me or the President of the committee Neil Moran on This e-mail address is being protected from spam bots, you need JavaScript enabled to view it if you wanted to know more...

A repeat of last weeks request; does anyone have, or know someone who might have, a storage area that we could use to store all our remaining gear - furniture, boxes etc, and even potentially all Richie's work gear - including his beloved ute (uteybungus), as the glorious Tony and Peta Heeson (who have been storing all our house gear) have sold the business and our things will need to be moved/relocated.  Our lovely ex-landlord Frank is still housing all Richie's work stuff and also the ute.  If the new storage area (i'm talking about a new storage area as if someone has already offered one up!) could fit then storing all our stuff together would be highly beneficial.  We look forward to hearing from someone/anyone/please! who could help us out with this storage issue.... thanks so much!

The rains have come to Brisbane and you can feel the earth soaking it all up and letting off a satisfied aaarrrrhhhh...  hopefully the grass will enjoy the drink and turn green.  It's very brown in this part of the world.

Love to all,

Kylie  

 

P.S. People have been asking how they can help us…. there are in actual fact so many things, but so as not to overwhelm i have thought it best to list just a couple each week.  the number two below i did try to get from Bangalow markets last Sunday, but the stall wasn't there unfortunately.  If anyone knows the stall holder please please let me know how to get in touch with them... thanks :-)

1.    Games – in OT we play many games, it helps Rich with his “tenedesis” and is good therapy.  One of our favourites to play during the OT sessions is “connect four” (naturally he does win most of the time!) and we have been thinking about what else we’d like to play… games that would be particularly good would be wooden ones as they are easier for Richie to grasp and hold onto.  One that we're keen to have a go at is “hungry hippo” which would apparently be a great one for him and Clover to play together, so if anyone has an old set they could send up we would be very grateful, and also our own set of “connect four” as we don’t have one and OT won’t let you take them out of the area, so we can’t practise or “play” out of the 1hour session each day.  If anyone else has any games they’ve had enough of and would like to send our way, we’d be most chuffed.  
2.    Blocks – or rather design blocks, today Richie was making patterns with blocks, and the ones I have thought would be really good for us to use together as a family for working on Richie’s tenedesis are the ones like Nova Star has, I think they’re from the Bangalow markets – they are wooden and different shapes and colours, and you can make beautiful patterns with them.  If anyone has a set they’re no longer using – again, please send them our way if you’re looking for a new home for them and I promise we would treat them well!!! 

Thursday 19th July, 2007

A really positive day for Richie yesterday... after spending much of the past 10 days working on strengthening his bung shoulder, he was hoisted back into a manual wheelchair again to try his strength out on pushing himself.  I left him for a couple of hours yesterday afternoon (at his request, and for me to have a glorious massage, a present from the beautiful Nicky - thanks Nicky!) so that he could do laps of the ward and practise his wheeling, and by the time i returned to him, ohmigoodness he was absolutely wiped out and exhausted, but he'd done really well, and felt sure when he showed his physio Grace today what he'd achieved yesterday, she wouldn't even believe it.  So go Richie go!  What a champion!  He is working so hard it's awesome...

A little food for thought.... are any of our friends/supporters out there in Bangalow/Byron keen to help out or be included in fundraising events?  Due to the resignation of one of the key players in the Richie Allen 14 fundraising committee there will be some reshuffling and people/persons with excellent organisational skills, a passion for the cause, and great communication skills are needed to join the committee.  The next meeting is Monday 23rd July 2007 @ 5.30pm @ the Bangalow Hotel.  Either just turn up, or email me for more information.  Your help would be greatly appreciated.

Another request, does anyone have, or know someone who might have, a storage area that we could use to store all our remaining gear - furniture, boxes etc, and even potentially all Richie's work gear - including his beloved ute (uteybungus), as the glorious Tony and Peta Heeson (who have been storing all our house gear) have sold the business and our things will need to be moved/relocated.  Our lovely ex-landlord Frank is still housing all Richie's work stuff and also the ute.  If the new storage area (i'm talking about a new storage area as if someone has already offered one up!) could fit then storing all our stuff together would be highly beneficial.  We look forward to hearing from someone/anyone/please! would could help us out with this storage issue.... thanks so much!

Cheers,

Kylie xx

P.S. Many people ask how they can best help us in small ways…. I have a couple for this week;


1.    Games – in OT we play many games, it helps Rich with his “tenedesis” and is good therapy.  One of our favourites is “connect four” (naturally he does win most of the time!) and we have been thinking about what else we’d like to play… does anyone have an old set of “backgammon” that used to be one of our favourites.  Another one we’re keen to get is “hungry hippo” which would apparently be a great one for him and Clover to play together, and also our own set of “connect four” as we don’t have one and OT won’t let you take them out of the area, so we can’t practise or “play” out of the 1hour session each day.  If anyone else has any games they’ve had enough of and would like to send our way, we’d be most chuffed.  
2.    Blocks – or rather design blocks, today Richie was making patterns with blocks, and the ones I have thought would be really good for us to use together as a family for working on Richie’s tenedesis are the ones like Nova Star has, I think they’re from the Bangalow markets – they are wooden and different shapes and colours, and you can make beautiful patterns with them.  If anyone has a set they’re no longer using – again, send them our way if you’re looking for a new home for them!!! 

 

Tuesday 17th July 2007

Well the week started with difficulty last week, and became increasingly worse as I had my 3 month “crash and burn” followed by trying to pick myself up and carry on – because this is life as we know it, and it’s not going to change anytime soon.  The week started with me all prepared to start my training in preparation for Richie to come home for a sleepover, only to find his physiotherapist had gone on holiday and nobody else knew anything about my training starting… so yet another week goes by, and frustrations plentiful.  

Many fellow patients and families had warned us of the “dreaded 3 month mark” where many people hit rock bottom, as reality about your newfound situation sinks in, but I felt sure I was so positive and on track that it would never happen to me.  Of course, however, it did, and this week I continue to struggle but I’m looking up and reminding myself constantly of all the glorious things in my life, and how lucky the three of us are to have each other, and so much support and love from our family and friends, and indeed reaching far wider than that…

So, yesterday my training started in earnest, I learnt to shower Richard, not as easy as some might think, and learnt to hoist Rich in and out of bed, back into his wheelchair etc, but there are still many things to go.  I will need to practise and practise so I get confident in my jobs, as one wrong move could cause his skin to tear, which would set him back by weeks and weeks.  

We were definitely buoyed up over the weekend with the news of the Byron Bay Rugby Club Fundraiser – hopefully will have a report from the Club soon to put on the website, but in the meantime I can let you know that it was a fantastic evening, many drinking and partying on until the wee smalls, and a huge financial success raising around $10,000 which will be going towards the purchasing of the block of land in Bangalow… great news – and huge THANKS to Byron Bay Rugby Club and in particular Christine Alexander who put in a mammoth effort making it the success that it was.  So Thank you – we are very, very grateful.

We had some wonderful visitors again over the weekend, Jesse and Andi from Bangalow came up and then Sunday we went to a party at Molly and Louise’s (they’re all from my dance classes for those who don’t know them – and to celebrate Molly and Louise being pregnant with twins!!!!!) very exciting news…  Clover had a wonderful time playing with new friends in the fantastic cardboard cubby Molly had made, and it was nice to visit and mingle and have some normalcy in our lives, with time spent away from the hospital.

Kate Jasmine and Dylan came up to stay for a night last week, particularly special for Clover and Jasmine, they love each other very much and Clover often tells her teachers at pre-school that she misses her “Bangalow friends”… it’s lovely when we get to see them up here.  I can’t even begin to think of how much I miss my (our) friends… when things are touch, or rough, and you just want to be with your friends having a cup of tea and talking through the challenges of life, it’s really hard when you realise they’re not around the corner, and even though everyone is but a phone call away – it’s definitely not the same.  Speaking of phone calls, due to our new financial situation we have had to disconnect our phone, however we can still receive calls at that number, but can no longer make calls out.  Please feel free to call us at home.  Richie's phone at the hospital is still waiting to be fixed - it's taken 4 requests and still no action yet, but we are eternally hopeful.

Bridgette came over for the weekend from NZ, and took me out for a scrumptious breakfast in New Farm Sunday morning, and then both her and Mum left on Monday (yesterday) which was very hard (mum has been here for 3 weeks and it was a very heavy-hearted good bye at the airport), but excellent timing struck again with “different Kylie” phoning and saying she was on her way to Brisbane for a few days… so bye to two, and hello to one, she’s bathing Clover as I type this, after cooking her dinner and then Clover will be all snuggled into bed ready for me to read her stories….  Isn’t it wonderful having friends who love to help!!??!!!!!!!!!!!  Thanks to you all…  In fact, when I mentioned to Clover that "different Kylie" was on her way (she used to be her babysitter) Clover was very excited and said she could come and babysit us both - I liked the idea of that very much :-) 

Damian Jane and Zia are still in Byron enjoying the sunshine, surf and fresh air, and Richard had another Friday night at the pub last week with mates from rugby – 5 of them this time, he’s consistently chuffed when they make the effort to come up, he’s always enjoyed the odd Friday night boys night!   He’s doing really well, has the odd “dark moment” in the middle of the night, but is coping remarkably well and facing his challenges with humour and strength.  I am incredibly proud of him and know I have a lot to learn from him and his approach to life.  He had a great visit last week from his Wollongbar TAFE teacher too – it really lifted his spirits for that day.

Well, that’s all from me… here’s to a better week and a return to a positive headspace.

Kylie xx

 

Monday 9th July 2007

Richie has continued to get small gains – his right wrist movement is improving, and his finger “pinch” remains good but has no strength, so picking up things is still a way off.  He is happy in his new room, is getting up early each day so making it to his rehab classes which is definitely a major bonus.  Today in physio he had a great time, something new – batting a balloon back and forth!  It will be a good one to practise with Clover, and he was working on his sitting balance, which is incredibly tricky but he’s having fantastic progress/improvement with it.

He spent the weekend out and about again, went to a rugby game with Damian on Saturday afternoon, and yesterday a big day at Southbank with friends from Bangalow, followed by a dinner at home.  Yazzy and Harry were over from NZ this week and they were amazed at Rich’s progress, as last time they’d seen him he was in traction, on his back with oxygen and drugged up to the eyeballs prior to his operation, so seeing their reaction to how great he looked and is was a great boost for us, it reminds us how far he’s come…  he’s doing great.

Today my training starts in earnest, as I begin learning how to hoist Rich in and out of bed, into shower chair, into wheelchair etc, also need to learn bowel therapy, catheter changing, turning in the night, checking for marks, pressure points to avoid pressure sores, etc all in preparation for Rich having a sleepover at home sometime in the next few weeks.  Clover and I are very very very very very ready for him to have a night at home.  It’s hard to say good night and he goes off in the taxi back to the hospital, especially when we’ve had a lovely day and evening and we want him to stay… it’s been 12 weeks now.  Only about another 30+ to go… but who knows?!

There is a big fundraiser in Byron Bay this Saturday night, organised and run by the Byron Bay Rugby Club so anyone that can get along to support – it will no doubt be a great night out and all proceeds going toward a worthwhile/needy cause! (can I say that!!??!!)  Damian and Jane will be going, tickets are $75 and it's a black tie affair (damn I won't be there - I love dress up occasions!!!) 2 course dinner with drinks, and guest speaker is Dick Laffan who was the Far North coast and Waratah coach.   All the proceeds will be going to the Richie Allen 14 fund... thanks Byron Bay rugby dudes!!!!!

Thanks to those who have been making financial contributions… both to the fundraising for the block of land/house, and to us personally, it’s all appreciated more than you might know.

We are looking into where we’re going to live once Rich is “released”.  Due to us not having a house (yet) we are unable to do his rehab at home in Bangalow, so we will all go to a TRP house (transitional house) in Brisbane somewhere probably around November for 6-8 weeks, and then (hopefully if we are approved to be eligible for it) into disability housing while we await the house being built… there are so many things to consider for a modified house which we are learning from OT, from the type of taps we will need so he can turn them on, to the front door opening system and the shower room etc etc.  it’s not just a case of choosing what colour we want the walls!  Although Clover is excited about hopefully having a pink room!  She said she’d like a rainbow on the walls and flowers and butterflies… Rich is a little worried it could end up like our bathroom in Bangalow from 6 years ago (anyone remember that room?!!! Ha ha)

Well, that’s all from me… good night, sleep tight, and don’t let the bed bugs bite ☺

Kylie xx

PS congratulations Pete and Amanda – we are thrilled for you that you’ve had another gorgeous baby boy – Pete the 2nd – we hope you’re (both) feeling well and that Charlie is being gentle!!!!

PPS does anyone out there know about computer programmes for MACINTOSH computers for landscape design or something similar.  Rich is desperate to get his brain working and would love to start learning a program like that in OT so he can really make the use of his time extremely productive while he's in rehab.  any info would be gratefully received... 

 

Friday 29th June 2007

It’s been an exhausting and very positive week at P.A.  Rich has come home each weekend, heading back to the hospital at nights only to sleep, and then back to us again in the morning.  Wednesday afternoon he picked up Clover from pre-school so he could meet her teachers and see where she is 2 days a week.  It was great for Clover, she sat on her dads’ knee and they whizzed around on his electric wheelchair and she felt very important.  Her friend Sarah, whom she met at the hospital as her brother is in the spinal unit with Richard (they are from Western Australia) started the same pre-school this week also which has been great.  

Wednesday early evening we had a big dinner party at home here with all our relatives who are up in Brisbane (Richie’s parents, my mum, cousin Dan and Anna, Denise Allen & David Gordon whom Mark and Sue stay with) as well as all the rest of us living in this house + Richard.  It was a great night, and fantastic to have him home mid-week.  We hope to do it regularly, as there is no physio on Wednesday afternoons and therefore officially he can leave at 12pm each Wednesday, however he’s concerned about how much it costs each time he leaves the hospital because obviously he has to take the maxi taxi to go anywhere.

Having my mum here this week has been fantastic, I’ve been able to be at the hospital a lot more which is really important now as I’m learning all the things involved to have Richard come home for one night sometime hopefully in the next month.  This morning he moved rooms to bed 13 (hope no-one is superstitious!) and it’s much better as he’ll be able to have early showers now which means he’ll make it to his OT sessions hopefully each morning.  So far he’s averaging only making it to 2-3 out of 5 each week as everyone in his room wanted early showers and most mornings he was the last one to get up, it was incredibly frustrating and so we’re hoping this move will mean his rehab will be able to be full steam ahead now starting next week.  It’s been 11 weeks (tomorrow) and to feel so frustrated because they can’t even get him up in time to go to rehab classes is difficult.  

Clover and Zia are really having a lovely time living together, it’s such a relief for me to have Damian and Jane here and know that a meal will be cooked, or washing done, when I’m unable to – which isn’t always, but often!  Damian and I went to Bangalow to attend one of the fundraising committee meetings as we felt we needed to be able to say thanks in person to so many people, and get more up to date with what’s going on and future plans etc, so it was great to see so many people and the next day I had my favourite pie from Choux Choux’s and caught up with some friends and it felt really fantastic.  I miss “home” more than anyone could imagine, but not just home – but our old lives.  “Home” feels like Bangalow, and even though so many friends come up to see us in Brisbane, it’s just not the same.  So many people don’t necessarily choose the lives they lead, but we chose every part of our life that we were living.  As a full-time mum I loved going to gymnastic and swimming classes with Clover, picnics, beach time, play dates with friends, and baking and cooking with Clover for Rich when he got home.  Bike riding as a family at the weekends, walks, games, we really loved all our family time.  Rich was always such a hands on dad from the moment she was born, and I’m missing so many aspects of that… I know he will be again, don’t get me wrong – I’m very positive about how things will be when we get out of here – but in the meantime, 11 weeks is a long time and there are so many adjustments all the time.  I miss our family cuddles.  Clover looked at a photo of her dad last night where he’s throwing her up in the air, and she said, “oh look, my daddy is standing up.  Oh. Oh. oh.” And I really didn’t know what to say to that.  She was very sad.  But again today she was in at the hospital having a ride on his knee and giving him hugs.

We’re looking forward to a great weekend at home again, friends up, Richie’s parents here for a big Sunday lunch, and possibly a trip to South Bank for a walk and wheel along the river.

Love to everyone, remember to hug each other –often.

Kylie xxx 

 

Wednesday 20th June 2007

Wow - writing that date above makes me think I can't believe how fast this year is going - it's crazy!  It's really chilly here in Brisbane today so I'm pleased to think that there's only another two months of winter to go!  Cold days are hard for Rich as he takes a long time for his body to register that it's cold, and then to heat up takes an even longer time.  Also, he doesn't like to go outside when it's cold and there aren't many options at the hospital of where to go indoors... anyway, don't want to sound like I'm complaining, and actually the reason for this quick update is to ask all those who emailed us through the website contact us page over the past two weeks to get in touch again as we never received the messages/emails.  there was a little technical glitch i caused a couple of weeks ago when disconnecting our home phone in Binna Burra where i also cancelled the email accounts without realising, so now we have just the one This e-mail address is being protected from spam bots, you need JavaScript enabled to view it and all the others no longer work.  please re-send - we love your messages and have been missing them over the past couple of weeks.  thanks xx

Tuesday 19th June 2007

Finally some independence for Richard!!!  This afternoon at Physio/Gym they fitted him out with a trial electric wheelchair - he was like a boy with a new toy!  He moves a little joystick, and off he goes!  It tilts back for when he needs a rest, and can go very fast - Clover had a running race with him (she won) and I know once he's used to it he'll be winning!!!!  

A number of people have been asking if there's anything they could bring up from Bangalow for Richie and yes, aside from the amazing food which Jody is cooking, he really loves the dried bananas and fruit flats from the Bangalow Farmers market, so if you wanted to bring something - it would be great to bring those goodies!

From NZ, he's very fond of the usuals - buzz bars, k-bars, toffee milks, caramel chews, rashuns, the list goes on!   As for me, I'm very fond of the fejoa sparkling wine, and also the fejoa wine.  yum!!!!!!

That's all for today... good night :-)

Monday 18th June, 2007

SHREK3 was a great excuse for the three of us to go to the movies - we have been waiting AGES (years!!!) for it to come out and so it was with great excitement that we picked up Richie early on Saturday morning and got in a taxi out to Garden City to the movies, then inside the big shopping mall afterwards to buy Clover some winter boots.  I think the shopping mall was pretty full on for Rich, but we loved being at the movies together, and having some family time which was more like our lives in the past.... 

We met everybody at home Saturday afternoon to hear about the fundraiser etc, and our friends from Bangalow the Evans' came for the night which was fantastic, especially for Clover to hang out with her friends.  Our friend Sorrell arrived from NZ and Sunday was filled with various short visits from people.  Another great weekend, both days at home, not as tiring as last weekend, so he's in at OT now working on the computer with a special mouse to make it possible.  will have to find out if they have one of those for macs - would be great to get him working on the laptop emailing people himself!!!!!

I think a major highlight for us has been connecting with Jody from Bangalow, who writes cookbooks and has offered to give us her surplus food (largely organic) yaay yaaay yaay!!!!  She brought up five different dishes, and we have been eating like we're in a restaurant at every meal - amazing.  When people are coming to visit, could you check with Kris and Gilly re. the roster, and then see if there's anything you could bring up from Jody for us?!!!  that would be great.

Thanks for all your support, we are still in shock over Fridays' fundraiser.  

Love, Kylie Rich and Clover xxx

 

Saturday 16th June, 2007

A quiet week became a crazy week by yesterday afternoon - the Bangalow fundraiser at 12pm at the A&I hall,and due to great technology we were able to watch the whole thing from Richie's room in the hospital!  We set up ichat between us on our macs, and it felt like we really were there!  A great day was had by all, and (i'm still getting my head around it) they raised $74,000 which seems completely unbelievable.  So it would seem that with the huge success of the Auckland fundraiser combined with the first initial Bangalow fundraiser and yesterdays' that we are approx. half way to securing the block of land in Bangalow!!!!!!!!!!  Absolutely unreal and we are so excited and so greateful - thank you everyone who has been a part of this so far.

Rich has been feeling better towards the end of the week, and was up and about yesterday and with the latest news that has buoyed all our spirits!

The last couple of days has been just Clover and I at home, and we are looking forward to Rich coming home today for a few hours of family time together.  This afternoon we are excited to be seeing the Evans family and the return of Damian Jane and Zia and the arrival of our friend Michelle from Sydney (aka Michelle's fundraising corner!) for just one night.  it's going to be a great afternoon/weekend and I hope you all have a good weekend also.

Love and light, Kylie Richard and Clover xxx

Wednesday 13th June, 2007

A number of people have been asking for our contact details... so here goes;

Richard Allen, Kylie Mowbray-Allen, Clover Mowbray-Allen

email . This e-mail address is being protected from spam bots, you need JavaScript enabled to view it
AIM IM & ichat . kyliemowbrayallen
.mac a/c . This e-mail address is being protected from spam bots, you need JavaScript enabled to view it
home . +61 7 3848 4290 
Kylie mob . 0404 751 850
Richie mob . 0410 667 376 (outgoing calls only)
Damian & Jane mob . 0408 831 178 
post . PO box 487 . Bangalow . NSW 2479
home . 46 Hamlet Street . Annerley . QLD 4103

Wednesday 13th June, 2007

It’s with a bit of a heavy heart that I write my update today.  Rich has been rather flat for a couple of days, hasn’t wanted to get out of bed – yesterday was a sore head, today sore head combined with numb shoulders.  This isn’t at all surprising as we always new there would be some hard times as well as the good, but we’re riding the wave of an extraordinary outcome after Saturdays’ fundraiser in NZ, as well as great outings on Sunday and Monday, so I hadn’t thought this hard patch would come at this time…. But it has, and I’m just sitting beside him while Clover is at pre-school, giving him head scratches and making him miso soup (thanks MiCardigan:-) while he dozes. 

The move out of our house in Binna Burra was a mammoth effort, thank goodness for Vanessa, Katy & Leonie turning up to help with the pack up, and then Damian and Blair with a few great friends doing the big move.  Due to a communication break down or perhaps just a misunderstanding, nobody else turned up – we were expecting heaps! – therefore we haven’t been able to move the ute or all of Richie’s work gear from the big shed at Franks, so that’s waiting for another day, and to another communication mishap we’re also we’re looking for a more permanent storage area as the one where our gear has gone to is actually up for sale!  Thanks Tony for letting us store it there in the meantime, and Frank for allowing Richie’s work gear and ute to remain where it is for the time being.  If anyone can help with a LARGE and very dry storage space in the area please let us know.   Once again Mike Illenberger was a shining star on the day, turning up to bring yet another load of our gear up to Brisbane.  This time Rich wanted all his office packed up (entire library of plant books etc) so that he can do work when he wants to and hopefully finish off the TAFE course he’d started part time earlier this year.

Clover was pretty sad to say good bye to the Binna Burra house and also to Star.  It was a bit heartbreaking pulling those two (Star and Clover) apart, but she (Star) is being very well looked after and is living at Coorabell with Blair, Renee and Nova Star – who often looked after her in the past when we were away, so she’s happy, loved and secure.  And extremely lucky to have had two great homes with people who love her – thanks Frank and Lynn for the awesome job you did looking after her, we can tell she was very happy with you in front of the fire and roaming with Harley!

The fundraiser on Saturday night in NZ was a huge success, not just financially, but by all accounts a really special night for everyone to be a part of… a lot of love in the air!  All our friends, many of our family members, old mates, new mates, they all turned up to support our cause and we are so grateful… so many people did so much to help make it so fantastic, but the work largely was done by Simon and Joe Allen (no relation) and KTK, so thanks you three – we know who to call next time we need some expert Event Managers!!!!  Our friend Clare has filmed the event so we are champing at the bit waiting to receive the footage – will be hilarious no doubt.

Sunday was a lovely day at home, Rich came in the taxi around 11am, Jane had cooked a “lamb of God” for Rich, Zia and Clover having a great play, Damian and Vanessa entertaining Rich and me just enjoying having him home.  Liza, Sam and Elli came by for a visit, then the Cromwell family and Walker (their adopted son?!) for the afternoon and early evening.  Sadly we had to say good bye to Vanessa, heading home to NZ to be with her family after a week with us, but we LOVED having her to stay, she’s a fantastic support and a great sister-in-law.

I have learnt how to change the wee bags (there is a more accurate term for those but I know you’d understand my one better!) and do pressure relieving lifts, and I’m feeling quite useful!  Monday (public holiday) Rich came out again, this time to the Roma Street Parklands for a stroll through the beautiful gardens (food for the soul) and a chance to hang out in the sunshine with friends… this time Crusher and Curly and his son Jared joined the soiree, and thanks to Greg and Damian – Yum Cha in the park!  Another wonderful day, and a great time for Clover running around with the men playing soccer and playing with Zia and the Cromwell girls.  I had thought Rich would be very tired, but he said no matter how tired he was, it was worth it to have had two such fantastic days out.  Yaay!

This week we were planning to have a family outing for the three of us to see Shrek3 but we’ll have to see how the rest of the week goes for Richard.  Jane and Damian managed to make him laugh a couple of times today, and Big John is visiting with him now while I type.  Tomorrow is another day and fingers crossed he’ll be feeling more like himself soon.

If there’s anyone who could help with the final clean at the Binna Burra house this week, please let us know and I’ll put you in touch with Katy who is coordinating the project. 

The fundraiser this Friday in Bangalow is looking like it’s going to be an amazing event, some fantastic auction items and great staff waitressing (all my friends!!!!) thanks to everyone who is involved.  It’s unbelievable.  Truly.

This Saturday is the “Rowing for Richie” Iluka to Grafton Rowathon, and they are seeking sponsorship for each kilometre of the 68 kilometre event to contribute to the Richard Allen Fund.
 
To pledge your sponsorship for this event please contact Nicky van Wijngaarden on 0411 144 877 or email This e-mail address is being protected from spam bots, you need JavaScript enabled to view it   Contributors’ generosity will be acknowledged during the significant media coverage throughout the Northern Rivers Region for this event.

We love you all, thank you.

Kylie Richard and Clover xxx

Ps please read the note about needing tenants for the house in Binna Burra – it’s a five bedroom beauty, and the chooks laying gorgeous eggs a bonus! xxx

 

Thursday 7th June
Hi everyone, just a few notes from the bedside courtesy of Richard and Kylie... 

1. I'm heading to Bangalow this afternoon with Clover and my sister in law Vanessa, for a big day tomorrow doing the final pack up/organise of what's to go into storage, up to Brisbane, or in the garage sale pile.  We are hoping that there will be guys to help shift it all (including Richards work gear and ute) on Saturday (apparently its a rugby bi?).  We are hoping to hear from the Bangalow Lions today if there is a storage place for it to go to, and borrowing Karens trailor (could anyone pick that up from her place?) for all the garage sale stuff to go into (there's a lot of it).  We are hoping to speak with Mike (Bangalows' milkman) re. one last load up to Brisbane (Mike I feel so bad asking AGAIN!!!), or is there anyone else with a truck who might be able to bring a load up?  Also, is there anyone out there who may be able to help with the final clean up of the house after the shift to ready it for new tenants on Sunday or early next week?

 2. Rich is really keen for visitors now and is hoping to hear from some of the rugby guys, especially those he hasn't heard from, and also other mates from Bangalow and the surrounds.  We have set Friday nights aside for "boys night" from 5-8pm (or whenever you're kicked out - sometimes you can stay later).  Also, weekends are a good time for catching up.  Please email or phone Kristen and Gilly - they have kindly offered to do a roster of visitors so he doesn't have the whole team visiting around his bedside at the same time!  Their phone number 02 6687 2210 or email This e-mail address is being protected from spam bots, you need JavaScript enabled to view it   Matty B and Shae are coming on Saturday - yaay we are looking forward to seeing you!

3. He's also ready for phone calls, so please feel free to phone between 8am-8pm.  whether or not you can reach him is another thing entirely - day is chocka with OT in the morning, off to the dining room for lunch, physio in the afternoon, an hour to spare then dining room for dinner or back to bed.  personally i think best time to catch him is after 4pm or before 10am.  but try your luck anytime... number is 07 3240 2181 or 07 3240 5865 @ P.A Hospital Spinal Injuries Ward.  he's room 8, bed 29...  and he's up for a chat!  Otherwise, text me on my mobile to organise a time to talk with him, his mobile with blue tooth is beside the bed but we leave it switched off until a time is organised and he's expecting a call.  my mobile number is 0404 751 850 and feel free to contact him through that.

4. To those who have done special things for us without our even knowing, thank you, and we would so like to be able to thank you personally so if you would drop us an email we'd be most grateful.  to those who have done special things and you think that we know about it, please drop us an email also as those first few weeks were rather blurry and we have forgotten many things.  i don't even have the excuse that Rich does of the drugs cocktail! 

 5. I am about to start lobbying for a play area at the hospital for kids (there is NOTHING here and there are many kids clovers age and younger as there are so many young guys in the spinal ward due to footy, surfing, motorbiking, and yes, to being drunk, so at times it's a bit of a nightmare for these kids having nothing to do, and no space for families to be together privately.  If anyone has any contacts, or has a swing set or something they could donate to the hospital (spinal unit), it would help us with lobbying through the hospital and local MP to get a family area/kids area happening at the hospital.  we spend such a huge amount of time here it would make our time, and so many other spinal patients' families, a much more fun and easy time.  let me know if you can help!

6. We had a bit of a technical glitch yesterday - when i disconnected our phone in Binna Burra (Bangalow) it also cancelled our email accounts.  After many hours we have managed to salvage This e-mail address is being protected from spam bots, you need JavaScript enabled to view it but none of the others, therefore to those of you who contact us on This e-mail address is being protected from spam bots, you need JavaScript enabled to view it or This e-mail address is being protected from spam bots, you need JavaScript enabled to view it sorry but they're gone!  (they're our business email addresses.)  Sorry for any inconvenience caused yesterday when NO-ONE could email in or out.  very frustrating!

Thanks to everyone for everything, a last reminder that the NZ fundraiser is on this weekend.  A phone number has been set up in NZ for $20 donations (comes off your phone bill) it's 0900 Richard and he's left his own message!   When you see our families give them a hug - it's going to be a huge night for them all.  

We love you all, thank you. 

Kylie, Richard and Clover xx

 

Sunday 3rd June
It’s the end of the weekend, Clover and I are having our first night home alone, Richard is in bed at the hospital relaxing after a very big weekend, and Damian, Jane and Zia are in Bangalow until tomorrow. 

We have been very naughty this weekend!!!  But more about that later...

Firstly, I need to tell you the best news we’ve had since arriving at PA hospital with the quadriplegia diagnosis (well, maybe not the best news as the best will no doubt always be when Richard was allowed to eat after four weeks of not swallowing).  ANYWAY, Friday night we were having a wee soiree with him on the balcony outside the spinal unit, when he was trying very hard to make his fingers move – trying to pinch his forefinger and thumb together and saying to his fingers “damn you, move, damn you” and suddenly they did!  So he tried again and again and even though it was only mere millimetres, it was a huge accomplishment as it was his first real improvement... Then we took his splints off his wrists to see if there was any other new movement, and sure enough after a lot of trying, his wrist moved a tiny bit.  By Saturday morning he’d practised so much that his wrist is now moving approx 3-4cm which is amazing, we’re excited about seeing the physios tomorrow and having them work with Richie on building this up... We don’t know what it will mean at this stage – but one of his dreams has been to get his hands, wrists and fingers back, and also his triceps – as that would mean he could push himself in a wheelchair rather than only relying on an electric wheelchair.  We are so happy for him, and so proud of his determination! 

Friday night I went out – a lovely woman I met through a pre-school (Keren) invited me to a girls night out and I drank too much wine and met many great girls, it was nice to do something fun but the hangover the next morning wasn’t fun!  However, Saturday was a great day, visits from Gilly, Kris and the utterly divine baby Annie (born one week to the day before Richie’s accident) and the arrival of Blair, Renee and Nova Star to stay for the night.  Clover was in heaven – Nova’s arrival was definitely some “normality” for her, and she’s absolutely worn out now from constant playing, bouncing on the tramp, tea parties and general kid shenanigans!  Renee arrived with amazing food and Blair spent the night with Richie watching the rugby while Renee and I drank too much fejoa wine and caught up on everything... I (we) have missed them terribly.

Today was the big day though – this morning Blair went in to have breakfast with Rich, and I suggested he see if Rich was up for an outing and if so, what about coming home in a taxi to see our new place for an hour?  And Yaaay – he was up for it!  As we hadn’t got permission, we had to take him up to the main entrance and have the wheelchair maxi taxi pick them up from there, come home (only five minutes away), have lunch, hang out for a bit, tour the house, and then back to the hospital... It was a great success, Rich so happy to see where we’re living, have an outing, breath some fresh air, and a quick visit from Davo and Karen before it was back to bed in his new room in the spinal unit.  We all felt very naughty to have taken him out the way we did, but it was worth whatever trouble we might be in tomorrow just for a couple of hours of having him home with us and hanging out like everything was back to “normal” (whatever normal is).  Anyway, that’s it from me, it’s nearly 7pm and I’m so exhausted I’m off to bed!  Looking forward to a huge sleep, as I mentioned earlier, it’s our first night up here on our own (Clover and I) and I’m trying not to be nervous, but definitely the only time I really struggle with staying positive is when I wake in the middle of the night and the enormity of our situation is very obvious, as I’m in the bed by myself, and my thoughts tend to stray...  Anyway, not to dwell on that, Rich is doing so well and I am so happy for him (and for us all) that he can move his finger and wrist that tiny bit – you know that song, “from little things, big things grow” well, I have been humming that and we’ve got so much positive growth to look forward to.  The fundraisers in Auckland (next week) and Bangalow (week after) are gearing up to be huge events, and while it’s a shame we won’t be there, I’m sure someone will take lots of photos and possibly video footage, and it’s exciting and humbling that so many people are putting so much time, love and energy into these two projects.  You Allen boys (Simon & Joe) you are AMAZING.  Thanks to everyone – we love you. 

Kylie, Rich (with some movement!) and Clover xxx

 Monday 28th May
It’s been another big day at P.A. But perhaps this one bigger than any so far... It started this morning with our family conference which involves anyone we want to invite from our families (my brother Damian and Richie’s mum Sue) as well as his doctors, head nurse, OT, physio and our social worker.  They talked about Richie’s progress, his prognosis, his possibilities for recovery, and his release (bring on the release!!) so it was pretty full on, and I got the chance to ask questions and vent my concerns and frustrations – it was a very big morning.  What I learned was that I have been misinforming people (and I was myself misinformed) and it would appear that Richard is in fact a COMPLETE QUADRIPLEGIC as opposed to an INCOMPLETE which I believed to be the case.

To those not in the know, it won’t mean much, but basically it means in terms of recovery the options aren’t as wide.  That said, and after a short time of feeling upset, I remembered that words are only words, and he will achieve whatever he can with as much energy and optimism as he can muster, and we will all be there by his side while he regains his strength in hospital and re-learns how to do things... As the physio said today in the conference, it’s like learning to ride a bike, or ski.  It takes a while to learn new ways of doing things, and we have been told he will be able to use a powerchair which is basically propelled with a motor and him using a joystick on one armrest.  We’ve been told that perhaps in as little as four weeks he may be able to come to see our new home in Brisbane and have Sunday lunch!

Following the conference Richie was off to physio – his mum had only just pushed him down the corridor when suddenly they were piling all his gear onto his bed and asking if I’d help relocate him.  What?!!  Yes, in true fashion here in the land of limited communication, they were moving Richard to another part of the ward with no warning, but which is actually great news!  He is no longer in “acute”, he gets more room (still in a room of four people) with shelves, a cupboard and we are pretty chuffed!  However it does mean getting used to different nurses, different routine and different systems.  After I’d set up his new area he was returned to his new room, and the next surprise was on me – he was in a new wheelchair – much more compact, much smaller – much easier for me to manoeuvre around!

So a good day all in all, with all the emotional highs and lows, and now he’s lying beside me watching the national geographic channel while I type this up...  He’s comfortable and happy and feels all the love that you’re all sending his way.

Much love to you all out there,

Kylie Richard and Clover xxx

Wednesday 16th May;

Richard has just had his nasal gastric tube taken out, we’re sitting up at the main hospital café, outside in the sunshine, and he’s being fed the $4.50 big brekkie and loving it!  Yesterday he was given the official word that he is now allowed to eat (slowly, carefully, and nothing with skin i.e. Grapes, tomatoes etc) and when they took the tube out this morning he was absolutely chuffed!  We’re off to the gym afterwards and he’s moving ahead with the weights he’s lifting!!!

Wednesday 23rd May--I am sitting beside Richards' bed typing on the laptop, as Clover and her
daddy lie together watching Play School!  They've had breakfast in bed, and
I've caught up on emails - a great morning!

Richard is doing really well since being given the go ahead to eat whatever
he wants.  He still needs to be careful and mindful of his swallowing,
everything needs to be chewed a gazillion times, and still ocassionally the
food causes a few problems - but what a difference it's made!  Having lost
20 kilos during the four weeks of not eating, he's keen to put it back on
and has been enjoying full-fat yogurts, milk drinks, lots of protein and
vegies, rashuns (thanks Joe and Bru!) and of course the beloved Apple &
Mango fresh up.

 Sadly his neck pain is huge much of the time, and Rich has been having
spasms which are sometimes so big they cause his head to come off the pillow
- which results in excruciating neck pain.  However, much of the time, and
especially when he's lying in bed, he's comfortable and peaceful, and
feeling positive.

 Clover had a great time at Bangalows' annual Billy Cart Derby at the
weekend, and came back to the hospital that night in her pink fluffy costume
saying "the billy cart derby was all about my dad!" which really shocked and
surprised her.  Money was raised, and again, it feels like the whole town is
rallying around us and Richard's recovery.  It's been absolutely glorious
having our little girl back with us, she's so happy in her new top bunk, and
her cousin Zia arrives tonight to live with us and be on the bottom bunk -
we are looking forward to that!  She gets to have rides on her dad, when
he's in the chair - she's pretty chuffed with that!

A big thank you to everyone in NZ who are spending hours and tons of energy
getting the NZ fundraiser up and happening - sounds like it's going to be a
great night, and Rich has been blown away by the efforts and donations
people are making.

 Love to everyone,

Kylie Richard and Clover xxx


Monday evening, 14th May;

What a day!  Rich has gone "hard out" on the food intake today... Soups from Nads by the bowlful, a piece of turkish bread, rashuns, ice-cream - great stuff!  Tomorrow morning he's having a test done called a scope where they put a camera down his nose into his throat to watch him swallow.  If all goes well (which judging by what he managed today it will) then the nasal gastric tube will come out of his nose and we’ll be having a BBQ with a piece of eye fillet and waiting for some Mongolian Duck from Tsangs to arrive!!!!!!

His spirits have been as high as a kite today after eating some bread, and he’s been cracking jokes, laughing like a hyena, singing a song on the phone with Clover, talking positively about where he’s headed over the next year, and generally it’s been a great day.  

To the lovely lady from Byron Bay (please make yourself known so we can thank you!) who brought Fresh Up for Richie and left it with Mike @ the Bangalow pub, thank you so much – he’s loved it! 

Here’s to another good day tomorrow,

Kylie xx

Sunday 13th May;

A good weekend in Brisbane.  Richie has managed to continue with his soups, and thanks to our friend Nads who arrived up from Sydney and is a chef – Rich has had some very wholesome and extremely delicious soups.  His swallowing is getting better and stronger every day.  A relatively quiet weekend, he’s still unwell, but is pushing through and his spirits are up this evening.

We officially live in Brisbane now, it was quite daunting to me last night, but this morning looking around our new house – it felt good.  Bridgette and Brent from NZ helped sort the place out as well as Di and Paul from Sydney, and Karen, Chelsea and Shannon from Bangalow.  You guys are all legends and thanks so much for making it “home” so quickly for me..... To all those in Bangalow who helped pack up and do the move – my gorgeous girlfriends and our Bangalow mates, you’re wicked, and we are so grateful!  To Mick and Jacqui for organising it all, thank you thank you thank you.  And to Mike Illenberger (we LOVE your shirt “yes I am the milkman!!!) you are a ray of sunshine in our world right now.  Thank you. 

A few people have asked about Richie lifting his arms up, so I thought I’d clarify;  Yes, he can lift his arms up, but he can’t put them down.  He doesn’t have the use of his triceps – only his biceps, shoulders and some in his forearms – so he can lift them up (very slowly and carefully to ensure the shoulder stays in its socket) but then has to sort of fling them sideways and out to bring them back down.  It’s still very early days so we’re hoping he will regain heaps and heaps more movement... Best thing to hope for at the moment is it would be great to regain some movement and/or feeling in his fingers... We were talking with another patient this morning who, after 3 years, suddenly realised his backside was itchy, and it took him a few minutes to realise that meant he could actually feel it!  So you never know what feeling or movement will come back – only time and positive thinking and visualising will tell!

Thanks and love to everyone, keep the positive vibes coming our way – we’re loving receiving them.

Kylie, Richie and Clover xxx

Ps – by any chance does anyone out there have a trampoline they’re throwing away or not using?  We’re trying to set up an area for Clover to play at the new house, but she’s outgrown her junior tramp...

 

 

Thursday 10 may 2007--It’s 11am and Richie is down at the gym with his physio.  Instead of joining him today I thought it might be a good time for an update.  Firstly, his new life starts in earnest today, as his intense physio & OT programs take up much of his day, and secondly, we’ve had a good chat about visitors so thought I should let everyone know where we’re at.

From now on, Richie will have physio from 10-12pm Mon-Fri, lunch and a rest, then OT 1:30-4pm, when visiting hours start... However, during this time he also has to have his shower and bowel therapy so visiting times can be cut short by the nurses. 

Weekends are best for visiting Rich, as there is no physio or OT and visiting hours are 12-8pm on weekends.  However having said that, he has said he would prefer not to have visitors (although he is looking forward to seeing everyone) for a couple of weeks as he’s exhausted most of the time, and is still not well with his chest, nose and ear.  If you would very much like to visit within the next 2 weeks, please let me know via email and I will discuss it with Richie and we’ll see what we can do.  If you are able to visit weekdays after 4pm, or weekends but only stay for an hour, I’m sure we can sort something out.  Otherwise, in a couple of weeks we are hopeful Rich will be feeling well, be able to sit in his chair for more than 8 hours, have gotten rid of his nasal gastric tube, and then be able to move out of the acute ward and into a less invasive environment in the big SIU ward. For those who have been interested in what else happens when someone has a spinal injury, read on and I’ll tell you a bit about it.... I thought that Richie would just sit in a wheelchair and I’d push him around bangalow, stopping off for a lovely cuppa at ATE and then dropping him off at the pub for a drink in the afternoon or something.  But it turns out there is so much more.... And we’ve only just begun finding out what is involved. 

When you lose the feeling and ability to move from the neck down, it doesn’t mean that you don’t feel or are numb.  He has had terrible times with spasms, and was very anxious when the “vibrations” started through his whole body.  Sometimes it’s described as his body being on fire, other times it’s like it’s shaking him very strongly – but to look at him when this is happening, nothing is moving.  He has suffered at times from terrible nightmares (I can’t describe them as they’re devastating and disturbing) which are trauma related and mixed with the various drugs he’s on.  He has found this probably the worst to deal with.  Due to being able to only cough a small amount, getting normal secretions up and out is a challenge, but a cold, flu, chest infection or anything like it is a huge deal as he needs to be coughed manually by either the physio or nurses throughout the day.  On top of this, physio comes to his bedside every morning to give him the “bird” which is something to breath through to loosen things up in his chest and lungs ready for the work out which is involved when he is getting coughed.  Also, each day he spends some time with a mask and saline solution being breathed into his lungs.  When he has saliva needing to come out, he asks for “suction” and we stick a tube into his mouth to suck it out – because he still can’t swallow it as it’s thicker than water or the other thin fluids he’s allowed to have.  He can’t be around anyone who is even remotely sick, think they’re about to get sick, or who is smoking, as he’s now very prone to repeat chest infections – which will always take him back to the acute unit (where he currently is now – and really, once he gets out he’s not going to want to go back!)

Skin is also a major consideration now.  He can no longer wear just any old favourite thing, when in bed he is naked under the sheets :-) but when in chair he is in shorts and a tee-shirt.  All tee-shirts must be at least one size bigger than normal (thanks Jules he is chuffed with his new I-Chong design shirts!) and shorts must have no pockets, thin seams, no buttons, domes, etc etc as if anything digs into his skin it will quickly cause pressure sores and that could set him back for weeks.  We meet patients in here who have been out living in their community for a few months or even years, but when they get a pressure sore they have to move back into the ward.  Shoes need to be a size bigger (which is difficult when you’re already a size 12!!!) and Bridgette bought him a new pair of black crocs which is great as they’re so easy to put on and so light.  He gets cold after a while of being in his chair so Damian has lent him one of his woolly hats to wear outside.  It’s still really hot here in Brisbane which is lovely, but soon he’s going to need to rug up a little when he’s in his chair. 

Moving on to bowel therapy and bladder... He needs a catheta (how on earth do you spell that one?!) and apparently many of the patients eventually learn how to change them themselves, and bowel therapy 1x a day to help them work.  His neck is still very sore when he is moved (like when he’s turned or rolled onto his side to change sheets etc) and he gets turned every four hours throughout the night so he doesn’t get pressure sores from being in one position for too long.  He wears pressure stockings/long socks to help not get blood clots, and when he is in bed he wears these weird things which inflate and deflate around his legs to help with circulation.  Already he’s lost 15cm off each thigh, and 10cm off his calves.  This apparently is just the beginning and very normal, as his muscles etc aren’t used.

His neck, arm and shoulder movement is improving, but he needs a seatbelt on in his wheelchair as he can’t balance at this stage and needs to be held in the seat.  Yesterday we found that he has a small amount of movement in his forearms, good bicep control, a little bit of feeling in his arms but none in his hands and he can’t move his wrists.  His neck is where he can feel the best, and his shoulders can move quite well, but they will need to be worked hard on at the gym as his arms fall out of the shoulder sockets unless they are propped back up into the shoulder joint as the muscles have become quite weak and at present can’t hold themselves.  Eventually (and soon we hope) he will have built up huge amount of strength and muscle tone so that he will be able to move his shoulders around very freely and perhaps even balance himself in his chair.

Damian has been hugely positive for us both, and he is currently helping Richard choose a sport that he wants to focus on so he can be in Beijing at the Olympics in 2008.  They realise they have their work cut out for them to get ready in time – but what could possibly stop them??!!

We are both accepting our new situation well, are looking forward to Clovers return, and hopeful that he will continue to make improvements every day as Richard works hard in the gym and at OT.  We feel very lucky for so many things, but mostly for all the love and support we receive from so many places.  We’ve had a few set backs, financially we’re trying not to worry as the fundraising efforts going on are HUGE and amazing, but we’re definintely considering buying lotto tickets as we’re going to need a big win!  The rugby insurance component is grim to say the least, and it’s disheartening to know that if he’d been in a car accident there’d be $5-6 million to help with all the associated costs and loss of income etc.  but hey, it’s really lucky we come from such a brilliant community and have such supportive people around us and each day we look at “Michelle’s fundraising corner” and are overwhelmed by all the financial support - people are truly amazing.  Thank you to everyone who has donated... It’s received with humbled thanks.

My day starts in here at 8am when I sponge bath him, shave and give him his facial and clean his teeth.  Then the Doctors visit, the physio comes, he has a soup, then is hoisted into his chair.  This all takes at least 2 hours.  After this, some days I head off to see our Social Worker upstairs, or sign some paperwork or take some calls or organise something or whatever... Then its the gym, a visitor perhaps, another soup, some lunch for me, a cough, some more meds (which are all given to him through his nasal gastric tube), a lovely sit outside in the fresh air with Richie, more physio, more nurses, then into a shower chair with the hoist, a shower from the nurses, back into bed with the hoist, another soup then a little bit of discovery channel and sleep.  By now it’s around 9pm and I head home.  This is why most of you won’t have heard from me as I have found it difficult returning calls or answering the phone a lot of the time.  I am quite tired!  Once Clover arrives all this will change and we’ll be in our new home.  Then I will have to get us a routine and find a way for her to spend some time with her daddy doing something special together, and at the moment I think the easiest and safest thing they can do together is watching a movie, as then he can doze off and she will be able to lie beside him quietly without bumping him.  All this could change in an instant, but for now this is where we’re at...

That’s it from me, I’ve tired myself out just typing it all up! 

Happy mother’s day to all the wonderful mums out there, I am looking forward to being taken out to lunch on Sunday by Karen, Shannon, Chelsea, Di and Paul (and baby in belly).  Thanks to my mum for loving Clover so much and looking after her so beautifully, and to Richie’s mum for loving him so much and arriving back here on Wednesday – we’re all looking forward to seeing you here next week.

With gratitude to you all,

Kylie, Richard and Clover xxxTuesday 8 May:
A difficult few days for us as Richie has a bit of flu, runny nose, ear infection and has been feeling pretty miserable.  Due to him being unable to cough, a simple cold/flu is made much more difficult.  Despite this however, he has pushed through and managed time in his chair each day, a couple of hours in the gym today, and 4 cups of thin soup! We have huge hopes for his favourite MONGOLIAN DUCK dish from Tsangs in Bangalow one day in the not too distant future, but in the meantime, just the drinks are keeping his spirits lifted.

The messages, emails, cards and text messages are helping us both stay positive and focussed.  Thanks very much to everyone for all the love... It is truly making a difference.

We hope that by the weekend we might have a new place to call home, we put an application in for a house to rent in Annerley, just 6 mins from the hospital, and I am looking forward to feeling a little more settled, eating some home-cooked meals, and getting a room set up for Clover who is arriving back next week.  We have missed her terribly!  Her dream is to have bunk beds, so I will try and track some down before she arrives.  Richie is looking forward to hanging out with her and watching a movie or two.   

Bring on Shrek3 arriving out on DVD!!!!

Kylie xx

 

Friday 4th May website news update:

A very big day here at P.A - Richie went to the gym and had a workout!  It
was amazing and inspiring, he did so well and is so determined, I am very
proud of him.  Lunchtime he was able to have thin soup and a glass of water
- very happy with that!  And then, to top off an already good day, the
surprise of the century - our landlords Frank and Lynn drove up to Brisbane
with a very special passenger - our beloved dog Star (starmoonsky,
starpuccini, stargita) and parked out the back, put Star on a lead and met
us at at our lunch table.  (photo attached) it was a very special moment -
and Star is the new "therapy dog" as Rich moved his arm more than we've seen
so far, and it was very moving to watch.

That's all for now, as I type this he is watching the bronco's vs rabbitoh's
game on Fox Sports with five friends around his bed... Happy as can be.

Kylie xx

 

2nd May 2007:   It’s been a big week in Brisbane... We’re staying in a house offered to us by a friend of Mike the Milkman of Bangalow which is only five minutes from the hospital, until we set up “base camp” which will be a rental house in Brisbane where Clover can have a bedroom etc.  The generosity of people is truly amazing, from the apartment at Kangaroo Point offered up by John and Chris Morrison for our first week, to the house in East Brisbane where we are now – to the fundraiser, the donations of money, the flowers and gifts – it’s all overwhelming, and makes us feel so completely loved and supported.
We have had friends and family over from NZ constantly, and they have been amazing in every way.  Damian, Jane and Zia (my brother and his family) and Mark and Sue (Richards parents) are going to be moving to Brisbane, so the support I (we) feel is huge.  Just to watch Richie’s brother Gerald, and his good mates who sit beside him, comb his hair (for a head scratch), wipe his eyes to cool them, kiss him on the forehead, practise his speech exercises – it’s all so poignantly gentle and beautiful yet masculine and just exactly what Rich needs and wants.   Clover is in NZ with my mum and family, is having a really great time and treating it like a big adventure, so it’s made it easier for me being at the hospital as much as I need, without having to worry is she getting enough of my time.

I have good news to report – Richie has been able to sit in a wheelchair on three different occasions now for a couple of hours each time, and it’s been incredible to watch his progress – albeit quite slowly at the moment as he still battles a chest infection, inability to cough, swallowing difficulties (therefore still can’t eat or drink), pain, and of course all the associated things that go with the body adjusting to its new state.  We’re hoping as of next week he may head to the gym and get started on his rehab, but at the moment we’re taking it minute by minute, day by day, and most importantly for everyone to know is that Richie is looking great (could be due to my daily facials and shaving, manicures and pedicures, and constant head scratching!) and positive in his approach to his recovery.  I don’t want to use the word “overwhelming” too many times, but right now I don’t have any other words that describe how all the support for him and us makes us feel.  It truly is overwhelming, Richie just can’t believe it.  To all the people who have sent emails, cards and left messages, thank you all, and we will respond as soon as we have internet connection on the laptop in the hospital. 

Just a couple of things to leave you with that are purely personal and more from my corner; the first is that I had a dream 2 nights ago that we were dancing together, and when I woke up, I felt a very heavy sadness... Until my superstar brother reminded me that I WILL dance with Richie again, it just might take a while and be in a different form..... But the point is – if that’s what I want to visualise – me dancing with Rich – then that is what we’ll do.  The other thing is I was so desperate for a hug yesterday (it’s been 2 and a half weeks remember!) I asked him if we could try, so from the side of the bed I leant over to lay my head on his chest, placed his arms around me, and even though I knew that he couldn’t feel it as I could, the big thing for me is that I could.  He still looks the same, feels the same, and is the same person 100%.   He is an amazing man (well, I did marry him didn’t I!) and will climb mountains.  He is capable of anything. 

Thanks again for all the love,

Kylie, Richie and Clover xxx

 

 

23rd April 2007---A successful operation on Wednesday was followed by five days in the Intensive Care Unit, so the move to the Acute Spinal Injuries Ward today was cause enough for a mini celebration, but for Richie to have his breathing mask reduced to a nasal oxygen tube so Clover (4) could kiss him on the lips, was something else entirely. He is still unable to move little from below the collarbone, but he is positive and focused and over the next weeks and months we will remain positive, focused and supportive as we all adjust. We are overwhelmed by the love and support we receive – it’s been a time to reflect on how lucky we are to have been blessed with such supportive and caring friends & family.

 
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