A Blog About a Bloke-Living with WHS

Here we are finally at the end of 2011. To be honest, this year has totally sucked. It has been one of the crappest years in a long time. I am still trying to make sense of some of the things that have happened, and I am still trying to figure out the reasons 'why' we have had to go through them. Maybe I won't ever know what those reasons are though. So what have I learnt this year? I am not too bad at organising stuff. The conference is one example. I sort of did ok with that. I have some anxiety issues. Not terrible. Not world ending/life imparing stuff. But it does sometimes effect me. Panic Attacks suck too. I have an incredible husband. I mean. I already knew that. But we are closer and stronger than ever. Ryley has taught me more about patience this year than ever. Braeden has taught me to try new things and to find my courage. I am stronger than I think I am-someone very close to me keeps reminding me of this. I have wonderful friends who continue to su...

So obviously I am going to write a wonderful reflective post about the year that has been and the hopes for 2012. But right now,here is the inbetween post. The one where I say how awesome our christmas was and how much fun we are having on our holidays so far. Kids are relaxed and so are we. Of course no holiday period would be complete without the obligatory trip to the doctor now would it? I mean, someone has to keep those medical practitioners busy. Le sigh. The kids have this really weird itchy blotchy feral looking rash on them. I had no real idea what it is. According to the doctor they have a "viral type allergic reaction rash that could be anything, but should clear up within a week". Well now. How super helpful was THAT diagnosis? A bit of claryntyne and some extra stuff for Braeden's ezcema and it should all be fine and dandy. I guess the good bit is that we didn't actually pay. The kind doctor decided that while he was bulk billing one, he m...

 I have spent a fair chunk of my day today trying to make this movie. Fingers crossed it works. Though knowing my computer skills, it may not... The song is "Party Rock Anthem" by LMFAO. It is seriously the song of the year I think. My kids LOVE to dance to it. We listened to it all the way to the Barossa earlier on this year (9 hours of driving). And personally, I don't mind it either, because it reminds me of the all the good times we have had during 2011.

My little Braeden is quite unwell at the moment and I simply cannot seem to make him better. As I was lying in bed cuddling him this morning, all that I could think of was the fact that I just didn't know what to do next to help him. With Ryley, I know what to do 9 times out of 10. The other 1 time I will always go to the doctor. And even then I am usually right with what is wrong and needed to make him well again. Braeden visited the doctor for the first time a couple of weeks ago. Pretty good going really (first time in nearly 4 years).  He had to go to the doctor again on Friday night (well the hospital actually). And to be honest, he probably needs to go again (I think? Fuck. I just don't know).  I have to say that stress is playing a major role here. Braeden was really affected by the craziness of the conference week. And now, even a month later, he is still showing that he is not ok. I am a social worker right? I should be able to help him through this yeah?...

That describes Ryley at the moment. A little ball of anger. He is tired tired tired. Something in his body doesn't seem right. And I don't know what it is. This morning I wrestled with him for 20 mins. He just didn't want to get dressed. The look of anger on his face was something I rarely see. Then when I took him to the bus he was pushing the attendent in the face and trying to pull her glasses off. (Which is kind of funny, but I promise I didn't giggle...well maybe on the inside). I have never seen him do that to anybody other than me. His school concert is tonight and I know he will be nervous. He always gets nervous. We have a tradition on school concert night where we have fish and chips for tea, then we get an ice-cream on the way home as we look at some christmas lights. Ryley loves the bit after he has been on stage. Braeden is beside himself with excitement about the concert tonight. I hope that some of the anger Ryley is showing me is becaus...

And here we have the annual Christmas tree photos. We FINALLY have the tree up. Ryley just put some tinsel on. Braeden putting the star on Christmas 2011

How good does my house look? Ok Ok. You're right. There is no way that is my house. I wish it was though. Those lights look lovely. Though I wouldn't like the electricity bill to go with it. Christmas in our house is an exciting time. I absolutely love building it up for my kids. I love that they believe in the magic of Christmas. It is a special time for them. We usually start mid way through November. I put up a few lights, find a few Christmassy things to dot around the house. This year, we have been drawing Christmas trees and Santa's, and colouring in reindeer pictures. Braeden has been walking around the house telling me everytime he does something 'good', because Santa is watching him. He has even been telling Ryley not to be naughty or Santa won't come. I just love watching their eyes light up when they see the Christmas lights. Or when we talk about what we will put out for Santa and his reindeers to eat. It makes my heart smile. We ha...

I really really need to start blogging again. My stat counter shows 9 people visited yesterday. 9 ?? Oh dear. That is probably the lowest amount ever . I have lots to share. Some new achievements from Ryley (despite him still being sick and barely spending anytime at school). Braeden is busy drawing beautiful pictures and completing puzzles. David finally has a boat. And me? Well. Nothing from me. Yet. Stay tuned. Am gonna get writing again...!

I know I have been missing from the blog in the lead up to the conference. And I will attempt to rectify that over the coming months. I have so much in my head that needs to be written down! Our family is tired at the moment. Worn down from the year that has been. Ryley has a subluxation of his toe at the moment which we can't do anything for. For the first time in his life this morning,  he lay down on the couch after his PEG feed and pulled a blanket up around his chin. If he had the words, I am pretty sure he would be saying "I am not going to school today Mum". Poor kid. I kept him home of course. His cough is still bad and he just seems so... tired. Braeden has finally started eating again. He pretty much hadn't eaten properly for 2 weeks. Partly due to gastro, and partly due to being out of routine. He has been so tired that he has been clinging to me and crying out " MAMA! " day and night in such a distressed voice. Sigh. Time to tak...

I feel like I have been writing this post in my head forever. Although it has only been a week since the conference! All the organisation, the planning, the anxiety...and just like a wedding, it was all over in the blink of an eye. I truly have no idea where to start in terms of writing this blog post. Do I start by telling you about the extraordinary families who made their way to our town? Do I start by explaining how Dr John Carey and his wife Leslie will always hold a special place in my heart? Should I just fill this post with photos? Perhaps I could write about the generosity of the volunteers, the people that helped me make this all happen? I think I might just start by saying that I can't believe that it is all over! For two years this conference has taken up a very large space in our lives. The planning and the fundraising and the making it all come together. As someone who has some anxiety issues (that would be me by the way), I still sometimes can't believe...

I promise I will write about the conference sometime over the weekend! I am still very much recovering from the last two weeks of stress, anxiety and sickness. Ryley and I are finally back at school and work today and fingers crossed we stay well now. But more on all of that later!!

I cannot possibly even start to reveal what that dream is right now, but stay tuned. If we can make it a reality, then part of this blog will be dedicated to sharing our experiences. My heart is absolutely filled with excitement at the possibility that it might work, and somehow, I just know it will. Aside from that. Less than two weeks until the conference!!! I cannot believe it is nearly here! Everything is organised and we are ready to go. I can't wait to catch up with all our WHS family, and to welcome all the new families!! What else has been happening here? Not much. My boys have grown taller. Slugs have been eating my snow peas. Blogging will feature in my life again very soon!

Yes Yes. It is an extremely rare event. But last night we had our 2ND night out together for the entire year. Oh imagine our excitement. Actually. We were extremely excited, because we were attending the Official Launch of 4p Aussie Kidz. You can go here: http://4paussiekidz.org.au/  to find out more. Or you can visit the blog here: http://ellieedayoung.blogspot.com/  to meet Ellie and her parents Mel and Luke. It was a great night, made greater because we won the slide we wanted in the auction. Mel and Luke did a great job and it is great to see their dreams coming true. I didn't get too many photos because my camera sux (I really need a fancy one). But the lovely Liv had her awesome camera and took a couple of us and our poster boys. Liv took a better photo than this (which is my dodgy one), but for some reason I can't get it on the blog. PS. Conference in less than 3 weeks..EEK!!

So, last year I posted during Carer's week and posed the question: Who cares about the Carer's? I received lots of emails and messages in response to it. Here in Victoria we are currently 'celebrating' Carer's week. Which basically means we all give ourselves a pat on the back or a 'hi-five' for being so wonderful. *Ahem* I think I found one event happening here in Ballarat. And that was it. There has hardly been any mention of it. Anywhere. So my questions remains. Except this time I am adding a word or two to it: Who the bloody hell cares about Carer's? Well, the government does of course. We save them 40.3 billion every single year by taking care of our loved ones ourselves. They do gives us $110 a fortnight in return to help us out. So WOW. That is awesome. Many people will use their words and express that Carer's do an amazing job. Uh-huh. Yet that is usually the extent of their support. A few words dropped here and there. Ok. Cool...

Those that know me very very very well, will know that this is my absolute favourite movie of all time (and Wuthering Heights too). I pretty much know the movie word for word. Anyhoo. I have pretty much been waiting for years for it to come out on DVD as my well loved VCR copy really was just not the same. So given that it came out today, guess what I went out and bought?? Braeden is currently glued to it. Ryley never really liked it that much (how disappointed was I??!). So now all my hopes are focussed on Braeden. He better love it as much as me. Bad luck I guess if he doesn't. Because guess what we are watching on repeat from now on??? There are SO many great lines in the movie: "Cheaters never prosper" (why thankyou for your wise words Zazu) "Hakuna Matata-it means no worries, for the rest of your days" (Oh if only you were right Timon and Pumbaa). "Hippity Hop all the way to the birdy boiler" (Oh you hyenas...gimme one of those boil...

I have been thinking about this question lately (despite my lack of blogging). I don't know if I have ever written a post specifically on why I blog. My blog will never be one of the 'popular' blogs. I doubt I will ever have 1000 followers (I doubt I will ever have 100). And that is mostly because I work nearly fulltime and the only real time I have to write is at the end of the day, and to be honest, I would rather just watch tv, go for a run, or read a book. I don't have the time to dedicate to it. Though sometimes I wish I did. So who should read this blog? Well. Anyone. I am tipping that most people who read the blog have a child or adult with Wolf-Hirschhorn Syndrome. Then there might be some other readers out there who have a child with a disability and sometimes like to read my thoughts on disability related stuff. Then I guess there are people who know me in real life and like to stalk keep up with me. And I guess occasionally my friends and family memb...

First post for October and we are nearly in the middle of it. Eek. According to my statcounter there are still the occasional reader who pops by. So thanks for that! I just don't have the time to blog right now. Which I hate of course. But you all know the reason why I am a little absent from the blogging world right now, so I won't harp on about it. So what's been happening in our neck of the woods? Well, lot's of stuff. It has been the final week of school hols this week, and I got to work the whole week. At first I thought "what a bonus, I don't have to do anything", but that very quickly changed to "geez I wish I could stay home". Sigh. Grass is always bloody greener isn't it?? Ryley and Braeden had two of their cousins stay and all the kids had a great time! We went out for tea to Pizza Hut, because really, 3 hungry boys (Ryley-not quite so hungry for pizza) and all you can eat, just go hand in hand I believe. David took al...

I know I am only posting very sporadically these days, so I would forgive you, my dear readers, if you lost interest. Countdown is well and truly on until the conference, and every spare minute is taken up finalising, emailing and organising. I didn't really have spare time before, so I literally have not a second spare right now. Very excited though as I hear from more families who are coming, and watching as things start to come together. There is never a dull moment in our lives either. Ryley currently has soft tissue damage to his ankle, or possibly a torn ligament. So he is not wanting to walk. I have been carrying him around and my back is just about stuffed. We are waiting patiently for his new stroller so I can transport him around a bit easier. Until then the old faithful stroller is getting a workout. Poor kid must be in a decent amount of pain though. Not fair. So bear with me. Once the conference is over this blog will get a revamp and I will bring in some change...

I love people watching. Me and Ryley are similar like that. I would happily sit with a coffee and just observe people. Today I did that. I had to catch a train down to Melbourne to pick up my parents old car (as we are currently without a second car and kinda need one), and then another train back out of the city. To be perfectly honest, I found it very peaceful. I was on my own of course. Hence the reason for the peacefulness. But I actually got to just observe people. And it can be quite funny at times. I love to just watch their non-verbal behaviour, their body language. Quite often though, I find myself getting sucked into their sadness. That is when I have to walk away. I often have the urge to just butt in and give them the solution. But I may get my head punched in. And then I am no good to anyone. Ryley loves people. Always has. One of his favourite thing to do is just watch people walking past. I can't wait until I have his new stroller because guess what ...

For those of you on Facebook, you would have seen my status update during the week about my overweight child. I was CELEBRATING the fact that my Ryley is officially on the calorie knockdown . Uh-huh. My gorgeous WHS child (pictured below) is having his calories cut by 9% because he is a little too tubby. I am SO PROUD right now!! Don't forget he is on a high-fat diet (Ketogenic Diet), so he was always going to put on weight. But it is actually music to my ears to not have to worry about him being seen as 'failure to thrive'. I hate the term 'failure to thrive'. It seems to imply and accuse you of not adequately feeding your child. Sometimes, just maybe, that child is just meant to be small. Because of his genetic makeup. Not because you aren't feeding him. And no, I am not bitter at all. Well. Not much anyway...! Aside from that, Ryley is busy recovering still. He is still on antibiotics for the umpteenth time. He is exhausted at the end of the day....

Sometimes there are things in life that you know must be happening for a reason. Yet at the time you just have no idea how there possibly could be a reason. Sometimes you need to look a little deeper to realise that there is always a lesson to be learned during our toughest times. Sometimes in order to experience and understand peace and happiness, you need to experience difficulty and hardship. It's wierd, but I recently found my old diaries that I had kept hidden away for over ten years. What an eye opener to say the least. Somehow I have managed to predict some of my future (sure glad I wrote it all down). But the thing that stood out the most was how utterly sad I was during those years. Desperately sad. Unnoticably sad. How I got through those years I have no idea. I also discovered something absolutely awesome though. Becoming pregnant with Ryley was the turning point. It marked a new beginning. It was the best thing that could ever have happened to me. It was the poin...

Sorry there has been no update for a long time. Ryley has been in hospital and despite being home, is struggling to fight the virus that is plaguing his little body. He has been a very very unwell little boy. David has the same thing and I have never seen him so sick. To the point where the doctors were more worried about David at one point than Ryley. There have been a few other things that have been added into the mix too, which has meant we have basically had the worst week in our lives. Our family hit crisis point about midway last week. We have never been in that situation before. Ever. A huge thanks goes out to my family and my best mates who picked up the slack and supported us through it all. We have also had many many offers of help and it is incredible to think that there are people out there who actually care enough to be there when we needed it the most. I hope that the next blog post sometime in the future will be more positive. But right now, healing our family is t...

That Braeden walks around the house and tells me at random times  how much he loves me. That Ryley giggles uncontrollably when he sticks his leg out and trips me over (this is a new game for him) We have cable (Austar) in our bedroom so we can all snuggle up together and watch Play School when it is raining. That the kids have loved making a robot out of old boxes and egg cartons and that we have to make improvements to it everyday after school/childcare. It is one awesome robot (it isn't real yet though-still have more work to do). It is nearly the weekend. Which means catching up with friends and spending time up the bush (allbeit chopping wood, but still, it is fun). I haven't taken any photos lately, so will try and take some this weekend. What things do you love today?

Some of this would be nice around now. I would like some warmth to go with it too.

Two posts in one day! Wow. The reason is because I just read this great post : We are Sisyphus  over at Healing and Empowerment. It really resonates with me because somedays it does feel like all I ever do is roll that boulder up the mountain, only for it to fall to the bottom and I have to start again. But it will always be a task that I will do. With love in my heart (sometimes with complaints, sometimes with sadness, sometimes with an overwhelming urge to let that boulder crush me). But always with determination to never give up. I am but one of the few who is privileged to know the value of life itself. To not have to search for meaning. I hold that meaning in my arms every single day. Embrace what you have. Never.Give.Up.

Sorry for the lack of blog posts. I have been sick (with gastro, yuck-why isn't there an immunisation against that yet?), Braeden has been sick and well. I am just exhausted. I have nothing interesting to write either. I will say that the crossroads thing is getting sorted. I will say that we have had unseasonable (is that the right word?) warm weather here this week which I love. I mostly love the warm weather because it means I am now up to date with my washing (oh get a life!). I will come up with a better blog post soon.

Have you ever reached a point in your life where you are faced with several paths? The long one ahead of you is where your heart is telling you to go. The one to the left is filled with exciting possibilities. The one on the right causes you to suck in your breath and close your eyes and hope that when you open them, you made the right decision to go down there. So which would you choose? Ideally, a combination of all three would be good. Anyway. Right now, I choose to close my eyes and sleep. Because I am tired. And Ryley is tired and not that well. And Braeden, is Braeden, and full of energy-always.

Well. Ya'll know that this is THE blog post that is going to list all the awesome people/companies who have helped us raise some great funds for the WHS conference. First of all though, let me thank everyone who made the effort to come along to the night. Especially those that travelled from Melbourne, Willaura and Geelong (and anywhere else I have missed!). We really appreciate it!!! The great news is that we raised a little bit more that what we aimed for which means we can do most of the things we wanted to do. So. I will probably forget someone, or some company. But I am trying to make sure I remember everyone. If you see a name listed here and want to know more about them, send me an email and I will pass on the details. The big auction prizes, kindly donated by: Tattoo-Peter Mosby Smith and Will Paul Kellett Coates Hire Collins Transport Mel & Luke Young Simon Franc Michael Walsh Silent Auction Prizes, kindly donated by: Torque Power Chainsaw a...

Do you like my diagram? I drew it myself. Ha! Not really. I just liked it really because it shows how many sensory points there are within our bodies. My Occupational Therapist friends will probably yell at me for posting a stupid diagram.  But I really want to somehow show people how Ryley's body seems to be at the moment. He is so ticklish at the moment, that changing him and dressing is even more difficult than it was before. He is seeking out deep pressure and wants to wrestle and roll over me as soon as he gets home from school. Partly, I think that is him unwinding himself from a busy day (most of us just prefer to sit and stare at the TV, go for a walk, or have a stiff drink (or is that one just me?). And partly I think his body is changing a bit. He seems to be able to feel things more at the moment. For example if he slightly bumps himself, he screws his face up as if to say "that hurt". He seems to have more awareness of his body and how it works too. He watches...

So given that I am totally preoccupied with the coming fundraiser (AWHSSG Ballarat Conf '11 Major Fundraiser in case you missed it), I am going to be slightly slack here and instead of writing how wonderfully and awesome our time over in the Barossa Valley  hanging out with the Doecke Family was, I will simply put some photos up instead. I will just spend a moment though to share two major milestones that have occured in Braeden's life this week: 1. After 3 years and 7 months, he is completed weaned from breastfeeding!! That sure does look like a long time when I write it like that. He didn't feed to sleep while we were away (which was the only feed he was having), so I took the opportunity not to remind him. When we got home, he requested his 'more', and I told him it had run out. He was not happy. But he isn't protesting much. I am hugely proud of my efforts with breastfeeding. (Just as a side note-has anyone seen the movie 'Grown Ups' with Adam Sand...