A Blog About a Bloke-Living with WHS

Sorry I haven't been blogging. Life is too full on right now. We have an awful lot going on and it is school holidays of course, which means things are even busier (having a child who is having constant seizures again also doesn't help). It seems there are quite a few of our WHS kids who are sick right now, so I hope that they are all better again soon.

As I was driving out of my driveway this morning, I wondered to myself how I did it. I have an hour to do the following: 30 minute PEG feed Breastfeed Organise some kind of breakfast for Braeden (this of course depends on how much BM he has had and what his mood is) Shower Dress Ryley (or battle him more like it) and Braeden and myself Pack school bag (with all it's various equipment and don't forget swimming stuff) Pack daycare bag (pretty easy, I normally just have to add Meerkat and hat) Pack my lunch Put washing on (or if I was super organised, put it on the line) Feed Rex Change Ryley's nappy again (he always dirties it again) All this happens before the bus arrives. This morning, Ryley decided he was going to be a little bit naughty, and battled me a little more than usual. He even decided he didn't want to walk to the bus! Braeden was ok until the bus left and it was time to get in the car. Then he threw a tantrum because he wanted to play with the...

So, we went out to buy some fish for our newly acquired fish tank. We came home with Rex. Mmmmmm. Not sure how that happened, but the kids love him, so do our other dogs. Mollie the cat...well see if you can find her lurking in one of the photos..she has already made it clear she is the boss of the household (not us humans).

If you were to look at this photo, would you think Ryley was sick? No. I didn't think so either. I let Ryley stay home from school today. He just cried the whole time I was getting him dressed and I just knew he didn't want to go to school. I don't know why. I think he is just really exhausted and needed some time at home. This picture was taken up at the Kricaks house. Makala had just driven Braeden down to see the cows and the calves. Ryley didn't want to ride in it, he wanted to walk. So he followed it all the way down and back without stopping at all!!! The kids had a ball. I think all that laughter is exactly what Ryley needed!

Uh-oh. Ryley is in trouble. It is not often I hear David getting a bit cross with Ryley. But Ryley is very stubborn. Tonight, he DOES NOT want to come in from outside thank you very much. He DOES NOT want to have a bath, and even though he is hungry, he DOES NOT want to have his PEG feed. No, he wants to play on his slide all night. I can't help but smile. This time last year, I would never have dreamed that he would be enjoying playing by himself so much that he doesn't want to stop. And have a look at him squishing his little brother. Braeden seems to be loving it don't you think? Or, possibly not! One of the nice things about Ryley having less seizures is the fact that his personality is well and truly shining through. He has such a wonderful sense of humour, he is cheeky, loves to annoy his brother and wrestle with him, and he has finally found things he can do without an adult to help him. Seizures are so debilitating. I read in an article the other day that the...

More than likely. Or perhaps it is more a case of me procrastinating as per usual. Instead of cleaning the house, preparing a gourmet meal for tea and running 12 laps of the Lake, I decided to create a 'Fan Page' on Facebook for this blog. So join it. And now I feel like writing 'or else' after that. In all seriousness, it really is just another way for me to educate people about WHS, stay in touch with families, and a place for me to continue to raise awareness about issues facing families who have a child/adult with a disability. Plus, not everyone blogs or comments, and it is just another place for people to ask me questions or respond to my posts.

Every now and then I get a glimpse of what it would be like to have an 8 year old who doesn't have a disability. And to be honest, it just about tears me in two. For the most part, I don't give a rats about the differences. Sometimes though, there is a reminder, a gentle nudge to tell me that my little big man will always struggle to keep up, that he tries and tries, but he just can't be like kids his own age. I think the times that I seem to notice it the most is when I see him with a certain look in his eyes. I think HE is sad sometimes. Yesterday, we went to play at the park. The park we go to is one I found that both the kids can use without my help. There were a couple of kids about Ryley's age there yesterday and he went to say Hi. They just kind of looked at him and then kept talking to each other. Ryley looked at me like he was about to burst into tears and I hurried over and redirected him to the slides. I could just tell  he didn't get why they ignore...

Most people who know me in real life or follow me on Facebook will know that we live 'in 'da hood'. Our street is a bit like a crime show. You know, always something happening and cops doing awesome things. Just last night in fact, a couple of cool looking detectives were 'roughing up' the 13 year old next door over something he didn't do. Nice one CSI. Last weekend saw the burning down of the resident pedophile's house which, as it turns out, allegedly was set alight by himself because he didn't want to live there. Word on the street too is that last week there was a drug bust on a house a few doors up over the road. I certainly didn't hear that one. You would think we wouldn't want to live here. But actually, we do. For now anyway. The thing is, we know most of our neighbours. The ones on either side we would do anything for, and they would do anything for us, and they do. We have two big scary dogs (well ok, they bark and Charley loo...

I was looking through some old emails on one of my very old email addresses that I no longer used and check out what I found!! Pictures of Ryley when he was sooooo little!! Going from the dates, he is not quite 3 years old!!

Braeden has just started having night terrors through the night. Bit scary really until I asked a couple of the girls at work who reassured me that they were normal. The last few nights (which, incidently coincide with him sleeping in his big boy bed) he has woken up screaming and trying to either climb his chest of drawers, or try and hide under the little ledge on his bed. I knew that he was still technically asleep, because he wouldn't even respond to his name despite his eyes being open. Anyway, it is reassuring to know that it will pass, and to just let him go whenever he next wakes up. The things you learn along the way hey?

I haven't done a Just 'Cos for a while. So here are a couple of pics. Yes, he is walking UP the slide. Why? Because he CAN! Braeden stuffing his face as usual. Those toys all go to bed with him at night too...

According to the Carers Australia  website there are approximately 700, 000 Victorians who are caring for a family member or friend with a disability, mental or chronic health illness or who is frail aged. Can you imagine what the figures might be like on a world wide scale? I have a child with a disability. By all accounts, he fits into the 'severe' category. I don't look at him as though he is a 'severe disability' which of course you all know. Nevertheless, it can be hard yakka sometimes playing that dual role of parent and carer. So, what can carers do to take care of themselves? Share the care with family or friends. This isn't really an option for us. But for those of you who do have that kind of help available, make sure you communicate your needs. Accept offers of help! Take some time to care for yourself. This is so important, but also the hardest to implement. What did you do before you had your child with a disabilty? Can you find time to do th...

It has been a long weekend for us this weekend because of Labor Day so, we have made the most of it! I managed to get some painting done inside the house and David managed to lay a stormwater pipe (or something incredibly important like that). The boys have both spent time on the slide, playing with next doors puppy (and also make themselves at home inside at our neighbours!), and just lots of general playing. How relaxing?! Today, was the Begonia Parade up at the Lake. Basically every year Ballarat has a Begonia Festival. The botanical gardens are beautiful anytime, but they look even better for this weekend. David had to do traffic for the parade, so the boys and I headed up to have a look around while we waited for the parade to start. We went and had a look at the little petting zoo thingy (what are they called again? You know what I mean, a heap of animals wandering around and kids can go feed them and pat them...). The boys LOVED it! Braeden was a bit unsure about p...

Please bear with me while I update the blog with our new look! I am still chopping and changing a bit. Let me know what you think!

One day, they are gonna kill me for putting photos up of them in their jocks! But for now it is so cute, I couldn't resist! They are so proud of their underpants. So proud in fact, that Ryley wee'd in his. Check out Ryley's tiny legs!

If you see me walking around with my eyes closed, bumping into things...can you wake me up please? Braeden is getting his last two molars (which will then give him his 20 teeth that he needs for now) and he has been a nightmare child at night. He has been waking every 1/2 hour. I kid you not. It's not a peaceful wake-up-and-then-roll-back-over-cuddling-meerkat kind of thing either. It is more of a SCREAMING-CRYING-MUUUUUUUUM wake up call. I try settling him with a drink of water, a cuddle, meerkat. Mostly it doesn't work. Mostly I have to breastfeed. After my glowing post on breastfeeding just...er...recently, you would think I wouldn't mind at all. Wrong. I have been battling a sore throat the last week or so and swollen glands, body aches. It is from pure exhaustion. No other reason. I am just a little bit over it now. Ryley, on the other hand, is tired. Exhausted from school. From life in general I think. I finally decided to research pseudoseizures, which is ...

How do you keep your bored kids busy on the weekend? Put them to work of course! PS. It is Autumn! Yay! I am loving the cool blast of air we have had over the weekend!