A Blog About a Bloke-Living with WHS

Old Jack Frost has claimed his first casualty last night. In the second picture in the front of the frame, you may be able to make out the dead pumpkin plants. Considering it was -3 overnight last night, we are surprised that that we only lost one lot of plants. The surviving plants are: Broad Beans, Chives, Silverbeet, Broccoli, Cauliflower and Strawberries! Oh well, now we know that pumpkin really shouldn't be planted in autumn like how the instructions stated! Both the boys are enjoying the garden, and do like to check on things.Braeden tends to like throwing the straw out and Ryley tries to pull the plants out, but hey, at least they are interested...sort of! We still plan on building another vegie garden box, just have to wait until David can find some more wood. The second vegie box is made from an old bridge that he had to remove as part of his job. So has anyone else had success (or not) with planting vegies? The strawberry plants have come from Veronica who is a much bet...

Lately I find myself using this term a lot when talking to clients. ( For those that don't know, I am a social worker and work with children and families who have a child with a disability/developmental concern ). Chronic sorrow is often described as a natural and normal grief reaction that changes throughout the course of your life. Parents who have a child with a disability, whether they realise it or not, all could be described as having chronic sorrow. Big call to make? When you first realise something is wrong with your child and then subsequently get a diagnosis, it is assumed that you go through a normal process of grieving and then you are ok. Acceptance is reached and you are expected to function the same as everyone else. I mean, you just have to 'get over' your dreams and get stuck into therapy because otherwise you aren't coping, you are depressed and you are failing your child even more? Right? As if the thought of going through a normal grieving process wa...

Winter has arrived in Ballarat early this year. Not that anyone is ever surprised when I say it's cold here in Ballarat. The town is renowned for its freezingness (if that is even a word). Yesterday it reached a grand old top temperature of 11 degrees, and for the most part, it hovered around the 6 degree mark. Considering it isn't even winter yet, it is a little chilly. Not much to do when it is cold. Both the boys go stir crazy being inside, but given the fact that Ryley already has a cough, we really didn't want them going outside. So we took them for a drive out to see Nanna & Poppa out in Amphitheatre. Ryley vomited AGAIN, so we didn't stay too long. He has gone to school today, complete with his St Kilda jumper. All his friends on the bus were asking him about his jumper and seemed to all want to say Hello at once! I think Ryley felt like Mr Popular today!! It is still cold today, and I am trying to keep the wood heater stoked up and roaring. I do really love ...

For Ryley, being overtired means he vomits. And last night that is what he did. Poor kid. He has been back at school for only 4 days and he is so very tired. He never likes to just sit and do nothing. He would rather be on the go and involved in everything. So quite often, his little body just says ENOUGH! Ryley has severe Gastro-Oesphaegeal Reflux Disorder (GORD) which he has been medicated for since he was about 10 months old. He is on a very low and only therapeautic doses of Donperidone and Losec. They actual doses have not changed since he first started. So the idea of not changing anything is that eventually, he will grow out of the medications and hopefully avoid anything like a Fundoplication. So when he is exhausted, his body reacts by vomiting. We are used to it now, but the poor little kid gets really upset still. REMEDY: Lot's of cuddles until he falls asleep (Dad's ones seem to be best at the moment!). Perhaps he was excited that his Mum turned 30+1 yesterday? Ano...

Forgive me for getting my back up a little, but there is something that is bothering me lately. Perhaps I have been living a sheltered little life out here in rural Australia...or maybe it's just that all of a sudden it's cool to be politically incorrect. When did the word 'retarded' start re-emerging? Did I miss something? Is it really not used now in a derogatory manner? Didn't think so. I seem to have been bombarded with it lately. In emails, on Facebook, in the street, amongst people I know...Seriously...are people so blase about they say that they don't even realise what they are saying? A 'retard' or 'tard' is not a funny or cool way to describe someone. People with disabilities thought they had lost that tag a while ago. Clearly though, people are still using this term in a manner which I am not comfortable with. But it isn't about me. Or is it? Every time I see it mentioned or have to listen to someone call another person a 'reta...

As much as I dread school holidays, I actually hate it when Ryley goes back to school. The first week Ryley spent with David at work which he enjoyed thoroughly! The second week was spent with his little cousin Talia; playing in the park with his friends Zoe, Jack & Toby; and then out on the farm at Willaura with Veronica and Tyler. In amongst all of that we have pottered around the garden planting things, and he has spent a fair whack of time on the trampoline and swings (and getting into mischief/fighting with Braeden!). This morning, he seemed nervous. I think he got a little confused about where he was going until I got his school bag out. Then he seemed happy and waited at the front door for the bus (which was late!). He didn't even say goodbye to me. Braeden and I waved and waved until the bus turned the corner, but all we could see was Ryley's little head looking the other way. *Sigh* I don't know if he was mad at me, or if he just wanted the bus to keep moving...

I love watching the boys playing together. Braeden is still at the stage where he is happy mostly doing his own thing, with just a little bit of pretend play thrown in when he feels like it. Ryley has never really been able to participate in pretend play, even though he has always desperately wanted to. He has always had to rely on me to be his arms and legs. Yesterday, was a little bit different. Seeing as we have lots and lots of cars and trucks, we decided to put them to good use and start building some roads. Braeden helped for a while then went off to climb rocks while Ryley started filling up one of the tiptrucks with stones. I had to help him, but together we made roads and started driving trucks and cars on the roads. It was so much fun and both the boys absolutely loved it! Braeden was running around with a car in his hand making "brrrmmm brrrrmmm" sounds and Ryley was pushing the trucks by himself. Hot work in the end and after a big drink of water, they both lost i...

This year Keto Meerkat (as pictured with Braeden) made good with his promise and delivered some cool alternatives to chocolate eggs! Both the boys were lucky enough to get some PJ's each and some books and even a DVD! Both kids loved reading the books and watching 'Happy Feet' on DVD. Chocolate missed? Not one bit. How did we spend Easter? We spent the whole day outside cleaning up the yard and playing with worms and dirt! Lot's and lot's of fun!!

We love Good Friday in our house. It is a day that is dear to our hearts. Not only does it mean hot cross buns for breakfast and fish and chips for tea, but is also the day that Victoria digs deep and donates to the Royal Children's Hospital. We often refer to the RCH as our 'second home' and are known throughout the hospital as 'frequent flyers'. I can't say that we are proud to have such a strong association with the hospital, because I would much rather we didn't have to spend so much time there. But we do consider ourselves very lucky to include in our team of specialists some of the top doctors in the world. The thing about the RCH is that despite the fact that there are so many sick children in there, it does feel like a home away from home. The staff do a wonderful job and we are very grateful to them for their part in our journey. I am looking forward to settling down on the couch in front of the wood heater and watching the TV telecast of the Appea...

This year the Easter Bunny has handed the reins over to his very good friend the Keto Meerkat. Easter Bunny (EB) usually only delivers chocolate eggs and doesn't have much time to deliver special orders. So he has asked Keto Meerkat (KM) to help him out. Keto Meerkat first came onto the scene last year when Ryley started the Ketogenic Diet. He has been on many adventures, including a sleepover in the Starlight room at the RCH. He is Braeden's pride and joy. When first approached to help out, KM was more than happy to oblige. He knows that there is no room for chocolate in the Ketogenic Diet, and he realises that Braeden is just too young to eat such sweets. We will have to wait until Easter Sunday to see what KM delivers, but it is sure to be special.

I don't really like the word normal. To me, it typifies everything I never wanted to be. It is what everyone strives for, because if they aren't 'normal' then they are different. People fear differences because they don't understand them, and often they use the excuse that societal pressure prevents them from accepting things which aren't normal. So what am I talking about? I would like to think that my children will grow up thinking outside the square. Ryley has a disability that prevents him from doing lot's of things, but it doesn't mean his life is null and void or that his life is not equal to anyone elses. He is able to do a million other things, often though, we just have to be creative, and we need to work harder as parents. Ryley needs to accept the help as well, and sometimes he really doesn't want his Mum sitting with him to help him participate in things. Braeden is already a 'helper'. At the age of 15 months he already understand...

Braeden is now nearly 15 months old and Ryley is now 7 years old! They love each other so much, but also fight! Here are some pics: Braeden loves to help Ryley!

It is definately time to start a new blog for Ryley. So many people around the world relied on his blog, and so many people took the time to email me or send me their stories. Ryley has changed so much and of course so much has changed in our lives. So WELCOME to our new blog: 'A Blog about a Bloke-living with WHS'