A Blog About a Bloke-Living with WHS

Source: blogs.eveningsun.com via Nadia on Pinterest It has nearly been a month since we had rain here. I am starting to go crazy with this heat. I have a friggin' head cold (again!) which I am not happy about. I only just got rid of the last one. Ryley is starting to get a bit stuffy too and Braeden is just sound asleep. The heat is getting to us. I want rain for my garden. I promise not to complain about the Ballarat cold ever again (well...probably shouldn't promise that!). Tomorrow we are off to the RCH for a day of appointments. First time at the new one which will be weird. I don't know my way around this one with my eyes closed. Fingers crossed we can increase the ratio of the Ketogenic Diet or increase meds or something. Ryley really is just not himself, and I hope it is just because he has grown and stuff needs adjusting.

That title needs to be said in the voice of Grumpy Smurf by the way. We are so busy at the moment. I have somehow got a glimpse into what life is going to be like in the years to come. Fitting in stuff after school is just hard work. I have therefore decided that Braeden will not be allowed to participate in any after school activities ever. That may be a little harsh. Perhaps I just need to work on my organisation skills (or something). Life just keeps plodding along. Ryley's behaviour at home is getting worse. So is the frequency of his seizures. I am tipping there is a link there. Bring on Monday is all I can say. His neuro is going to have to figure it out for us. Braeden has decided he is going to play footy (much to his Dad's delight). He is currently wearing his footy jumper as much as possible. And yes, I do know it is summer. He was playing footy with his balloon this morning. A couple of days ago this balloon was actually his baby brother/sister who w

When you are out and about and see a person with a disability what do you do? What is the first thing that pops into your head? Do you quickly look away, avoid eye contact and walk just that little bit quicker? Or do you stare at them? Do you feel sorry for them, or sorry for their carers? Do you assume that they are stupid? Do you assume that they can't do anything for themselves? Do you assume that they are happy to be there? Perhaps you make eye contact and smile. Even say Hello. Perhaps you are afraid to say or do something 'wrong'. Do you even notice people who are different? I do. And I smile and nod if they happen to make eye contact. Just as I would do with anybody that came my way. What do you do?

I know many of you already know what 'The Dream' is, and over the next couple of weeks, we can finally spill (most of) the beans. A quick recap for those who have forgotten: The Dream is basically an idea that has evolved over time as a solution to when Ryley finishes school. My worry has always been that as soon as he turns 18 years old he will have nothing to do. Sure, we have 2 options here. One is a day program type environment. The other is like a sheltered workshop type environment. Neither of which I feel will necessarily suit Ryley. Of course things may change in 8 years time. But for us, we really felt we needed to create a future for Ryley, instead of just waiting to see what he might be able to do. I actually have very little faith in the system at the moment too. I have been discouraged recently at the way I have seen supposed carers treat the people they are caring for (eg. Not changing someone's nappy for the whole day is just not friggin' on

Ryley scared the hell out of me today and I am only writing this because I just need to get my thoughts out. This morning he had a 10 minute seizure of some description. I say some description, because it wasn't a generalised tonic-clonic. His eyes just moved rapidly from side to side, his breathing slowed and his face started to go blue while his body remained limp. I have never seen this type of seizure before. He basically vomited before hand, then vomited afterwards for about an hour. He isn't sick. There has been no indication that anything is wrong in his body. All I can think of is could this be hormones??? So all day I have been scared as hell, watching him like a hawk and hoping like hell he doesn't have another one. I very nearly called an ambulance and if this happens again I will be. 10 minutes is too long. I should have called one at 5 mins. Just when you think things are going along fine hey? BAM! They turn to shit again. In amongst all

Well here we are. At age 10. Sometimes it used to seem so far away. Sometimes it felt like we would never quite get here. But we are here. You are tall. You are smart. You are as healthy as you can be given all the crap happening in your body and brain. You amaze me, still. 10 years ago today I became a mother. While I was pregnant with you I couldn't wait to meet you. Like all expectant mothers I told you about all the things we were going to do. All the things you could be. I dreamt about the camping trips we would take, about the sports you would play, about just hanging out with (hopefully a few of them) your brothers and sisters. But some of that wasn't how it was meant to go. Instead, you arrived in the most traumatic of fashions. I couldn't even hold you for the first two hours of your life. I couldn't even see you for those first two hours. I was stuck somewhere else in a hospital room, unable to move and desperate to see you. To hold you. To b