A Blog About a Bloke-Living with WHS

And I feel awful. It's the kind of thing I never do. Ever. After swimming today, I took Braeden into one of the Disabled/Family changerooms to save time. I know, I know. I can hear the outrage now. And believe me, I feel guilty as all get out. The whole time I was in there I was thinking, what if someone comes along and needs it more than me and has to wait because of me. I think we were in there for all of 7 minutes. Now, in actual fact, there are four rooms for families and those with disabilities so it does serve for both purposes. So I wasn't actually doing anything wrong. So why did I feel so bad? I mean, I have gone to use it so many times with Ryley and haven't been able to because of able bodied families using it. I have said nothing. Just patiently waited with a freezing cold child. I think I felt bad because I really truly believe that there is just not enough facilities for people with disabilites, and I don't think I should have been using i...

Hark the herald angels siiing. I feel the need for boring posts coming on. Seriously. Either that or I am taking this blog all the way to the shadows of privacy. I am starting to feel a bit wierd about privacy on the 'net at the moment. I am on the verge of taking down my profile on FB actually. The only thing holding me back is the fact that I am in contact with so many families with WHS. But maybe I can get around that? Anyway. Today's fluffy post idea is completely copied from Sunny Side Up . Check out her blog people. It is way awesome. So here are random thoughts and happenings from the past week: Ryley has developed a 'snarl'. This means that if he doesn't like what you are saying he snarls at you. Been trying to catch it on camera. But he is too quick for me. Snarl. The boys and I made an aeroplane out a box last night. We painted, cut and stickytaped for an hour and half. They are so proud of it. I took photos. But I don't plan on putting photos ...

"It's funny how you seem to ignore some questions" This was posted on my formspring page, last night I am assuming. Not sure which questions I am ignoring. If you have a question you feel I am ignoring, ask me again, either by email, or by commenting on this post. As I have said before. I am happy to enter into debates with people about the things I write. That is why I put it out there. I do not know all the answers. I am not always right. This blog is about MY experiences. If you don't like it, don't read it. If you genuinely want me to clarify or justify something then please let me know and I will do my best.

Did anyone notice I haven't blogged for a while? Hmmm? Life, as usual, just got in the way a bit. Sorry 'bout that. Never fear though, I have been writing a million blog posts in my head, so they are bound to come out eventually. Ryley has been sick again of course. So already I have had to pick him up from school early. Sigh. It's nothing serious. Just a cold/cough thingy. But you know he didn't have pneumonia all that long ago, and crikey it worries me that this thing will turn into the same thing. I mean, I had no real warning last time, so I am going to be watching that kid like a hawk from now on. Well, more like a hawk with binoculars on. So what's been happening then hey? Nothing much really. I am trying to keep off the computer a bit. Amazing how much time one can waste playing stupid facebook games. I am about to go and light our wood heater. And yes, it is summer over here. Not that you would think so. I have been running like a run machin...

Such a big thing isn't it? Trust. Today as I ran around the Lake (yes, thinking AGAIN, can you believe it?), and as I passed by one of the restaurants I saw two adults with disabilities in wheelchairs with two carers. Whether the carers were family members or not I don't know. I don't think they were, but won't make assumptions. I stopped dead in my tracks to be honest. I had to take deep breaths and compose myself. I just felt so overwhelmingly choked up and overcome with...well worry, sadness, concern...and this feeling of are those adults OK? Now. Keep in mind that these carers were doing nothing wrong at all. They had obviously just come out of the restaurant and were waiting for transport. I think I just caught a glimpse of how much trust is involved in leaving your child/adult with a carer. I mean, what if those adults actually wanted to go see the ducks. What if they wanted to do something other than be at a restaurant? Ryley is non-verbal. Completel...

It was great to see so many people watching the You-Tube video and commenting on it and passing it on or reposting it to FB or their blogs. But I have been thinking about it the past few days, and truly thinking about what people would do. I know that everyone who has a child with a disability or a sibling or family member with a disability would stand up and say something. But would other people really feel that strongly that they would? Did my comment at the bottom of the video prompt people to think "fuck off Anna, just because YOU would say something doesn't mean we would". I bet a few people probably did think that (provided you actually did read my blog post). You know, I actually think that is ok though. The world is made up of lots of people who are passionate about a cause. Which is great. How else can you bring about change if you aren't actively doing something about it? I am passionate about disability, and wish that everyone had the same attitude as m...

I don't usually get emotional about the things I see on You-Tube. But this one struck a chord. So, what would you do? I would, of course, be the one who stood up to ANYONE who treated someone with a disability with disrespect. I wouldn't even think twice about it. I would hope that the people who read and follow this blog would do the same.

Well, the day is almost over, and I am writing this at 5:03pm which is the exact time that you entered the world 9 years ago. It feels like only yesterday that I held you in my arms and just gazed at you in awe. I will never stop gazing at you in awe. I hope that you have had a wonderful day today with some our closest friends and family. You spent most of the time on the trampoline, which is pretty much your favourite spot in the backyard! I know that life can be a struggle for you, and that things are really hard at times. But please know that you are very very much loved, and that your Dad, brother and me are always here to love and support you. You are growing into a very big kid and your confidence and maturity is really showing now Ryley, I hope that this year you continue to be happy. Continue to gain confidence, and find ways of doing things your own way, like you always have done. Your Dad and I are so very proud of you. You are our heart and soul. Lots and lots of Lov...

Ever got to that point as a parent of a child with a disability where you just feel like you cannot go on another minute without a break of some sort? Your energy is spent. You can barely put one foot in front of the other, let alone hold a conversation. Every time you think of a nappy change, a PEG feed, medication giving, dressing/undressing, lifting, you just feel sick in your stomach. That is how I have felt today. Like I just cannot physically move any more. Like I just can't watch another seizure. Like I just can't try for the millionth time to understand what Ryley wants. Like I just can't help him understand why he isn't staying at school today. Like I just can't look into those beautiful eyes again without feeling like the worst mother in the world. I have to keep going though. And I will find the energy to play with the playdough, or draw, or go on the trampoline. And I will tell Ryley that tomorrow, he can go to school on the bus. And I will...

Sometimes words that are meant to be comforting, actually end up being anything but. Today Ryley had his gastroenterologist appointment, and really, it pretty much one of those visits where we are in and out. He is only being monitored at the moment ($125 later). The doctor is lovely and we have been seeing him since Ryley was a baby, but today he remarked ever-so-casually "I can't believe how well he is...I mean...I didn't think he would be still with us". Yes, ok, it is great to hear he thinks he is doing well, but really? He didn't think Ryley would still be alive? Not exactly the words I really want to hear thanks. I agree that Ryley is healthier both nutritionally, neurologically and developmentally by being on the Ketogenic Diet and being PEG fed, but would he be dead right now if I hadn't got the PEG? Perhaps one of the specialists could have alerted us to this a little earlier and encouraged the PEG insertion when he was younger rather than tell m...