Thursday, December 31, 2009

Looking forward...looking back..

Well another year is nearly over.
Both my boys have grown (including Ryley!!)
I have returned to work.
Our renovations are still not finished.

My house is still a mess.
There are toys everywhere.
I still keep piling the boys new clothes into their drawers without removing the stuff that doesn't fit them.

Ryley is still on the Ketogenic Diet, though may come off it next year (gasp!)
He started walking this year!
He loves school so much that he would rather live there than here!

Braeden has all of a sudden become a toddler (when did that happen?).
He can tell us what he wants using a combination of words and signs, and he chatters away to anyone who will listen.
He is a very kind and sensitive soul, who has reminded us to smile.

Who knows what 2010 will bring for us. Plenty of challenges. I am certain of that. In fact, there is no escaping that. That is just the reality of our lives.
So I have a few goals..

1. To try and be more patient. Most people who may look from the outside in, may think I am a very patient person. And, I guess I am in some ways. But I personally think that I need to be more patient.

2. To try and find some time for myself and some time for me and David. We joke all the time that the last time we spent any time together just the two of us was when I was in labour with Braeden. Not really that funny I guess considering what we deal with on a daily basis. So I am going to try and find some respite.

3. I want to be able to run the Lake (6km). I haven't run for years. In fact, this year, I have barely had time to do any exercise. So part of finding time for me, will be to challenge myself to start running again. Eventually I would love to participate in something like a run for charity or something. But I won't get ahead of myself just yet!

4. To keep encouraging Ryley and Braeden to learn and experience the world. Your life is only as good as the stories you can tell, and the only way to have stories to tell is to experience things!

So, not many goals. I think the main thing is that we can continue to provide our kids with all the love and support that they need.

I am going to take a little blogging break. Not sure for how long. I am not in a very good place at the moment in terms of coping and I feel like all I blog about is negative things. I need a break. I need some sleep. Neither of those things seem to be coming anytime soon. At the moment, I am so physically exhausted that I feel sick all the time.
I will be back in the New Year.

Anna xx

Wednesday, December 30, 2009

Just 'cos







Seizures, Tantrums and....fun?

In that order.

Ryley decided today was a good day to do his whingy noise AND have heaps of seizures. I truly thought it was going to be the worst day yet.
BUT.
I have a timetable.
It is only a very rough one. But it sure does conquer that noise!

I think what Ryley really misses is his routines. Plus the fact that there is always something for him to do at school, or at the very least, school is noisy and full of action. Home is just so boring and dull compared to that.
So I really need to try and create some new routines, as well as throw in some structured (and non-structured) activities.
Today, we managed to do some painting, play on the swings, play on the trampoline, watch some TV (PlaySchool and Wiggles) and...the highlight...go for a swim!
Ryley was so incredibly happy to be in the swimming pool. He loves his floating ring, and he tries to swim, float, jump, and basically he didn't stop laughing the whole time!
And the best bit of him being in the pool...no seizures and no whingy noise!!! YAY WOOHOO!!

Braeden, was a bit timid at first in the pool, but once he figured out he could walk around very easily, he became very confident and was blowing bubbles and ducking his head under the water. Even trying to copy David with a bit of swimming action!
He did have a massive tantrum though. He didn't want to get out of his little cloth bathers that he wears underneath his full body bathers. He was very dramatic about it all, and threw himself on the ground, threw his nappy away, jumped on the couch, jumped on his bed, ran around the house...all the while crying his heart out and checking to see if I was watching.
I wasn't of course.

So, after being in utter despair to start the holidays, I am feeling slightly more positive. One day at a time. It's all I can manage to think about really.

I will post some Just 'Cos photos in a minute. Just so everyone can see what perfect angels my kids are.

Sunday, December 27, 2009

It's started

The whinging that is.

Ryley is bored.
He is sick of the trampoline. He is sick of the swings. He is sick of his climbing frame. He is sick of the Wiggles and PlaySchool. He is sick of his cricket set, puzzles and paint.
"Is it time to go back to school yet?"

We have 5 weeks to go.

It is doing my head in. Braeden refuses to have daysleeps, and spends half the night up feeding as a result (he is overtired and trying to calm himself, but even the BF isn't working). And Ryley spends the day doing THAT NOISE.

Seriously.

I am going to have to draw up a timetable I think with planned activities. I will have to be specific. I will have to allocate time for certain things...

I guess I am just one of 'those' mothers. You know, the ones who dread school holidays. You know, those terrible, horrible, heartless mothers who don't want to spend time with their children. 
Yep, that's me.
Actually, I am one of those mothers who desperately wishes her nearly 8 year old son had some friends he could invite over for a play. I wish he had friends who would phone up, spur of the moment Can Ryley come over for a play today? I am one of those mothers who wishes her nearly 8 year old son could entertain himself. Play some stupid computer game on his own, read a book, or ride his bike. Hell, I would even settle for a nearly 8 year old kid who could tell me what he wanted to do.

Instead, I have a nearly 8 year old kid who needs help on the trampoline, he needs my help on the swing, he needs my help to fingerpaint, he needs my help to read a book. And me, being the terrible mother that I am, also has a nearly 2 year old who is right in the thick of being unable to regulate his emotions, who needs help, but doesn't want it, who clings to me because he wants as much attention as the nearly 8 year old...

So yeah.
Back to my timetable.
It will seriously be the only thing that will work I think. If I divide the day up into half hour blocks of activities, then surely we will all get through the holidays??

So let me see, that is 35 days to fill with activities. The kids are generally up at 6:30am everyday and go to bed at approx 6:30pm (Braeden at 7:30pm). So that is only 12-13 hours per day to fill.

Awesome.

Saturday, December 26, 2009

Some Christmas photos

We had a lovely Christmas Day this year! The boys liked their presents and we had a fun day out at David's parents house. So here is a few snapshots from the day!










Thursday, December 24, 2009

Merry Christmas

I just want to wish everyone a very Merry Christmas! I hope that you all enjoy your day and that Santa comes to visit tonight!!

Both Ryley and Braeden are fast asleep after warnings from me that if they don't sleep all night then Santa won't visit. Ryley was listening and I know he will sleep all night now. Braeden....well...he will try I am sure!

I usually like to make a few christmas wishes and this year is no different. So here are my wishes:
For Ryley:
* That Ryley can continue to grow and be healthy
* That Ryley can maintain his current amount of seizures (less would be even better).
* I wish that we can get Ryley the communication tools he needs to help him get his point across!
* I wish that Ryley can continue to enjoy his life and can experience as many wonderful things as possible!

For Braeden:
* I wish that Braeden can continue to thrive and grow.
* I hope that he can continue to enjoy his life.
* I hope he stays as healthy as he always has been (nearly 2 years old and never been to see a doctor!!).
* I hope that Braeden knows how much we love him!

I was so proud to read both my boys progress reports this year. Ryley has met so many of his goals, and we set some new ones, especially around handwashing and toileting. I am very excited to start following these through at home.
Braeden's childcare does a portfolio for him, which basically tracks his developmental progress over the year. I was absolutely thrilled to read that Braeden is exceeding any goals set, and is constantly having to be challenged!  He is now even talking in two-word sentences!

To all my readers, may all your Christmas wishes come true. Thankyou for reading my ramblings and for all the support that I have got from all around the world. It truly means so much to me..

Anna (& David, Ryley & Braeden) xoxoxoxo

Wednesday, December 23, 2009

Christmas time

How do you hope to spend Christmas? I hope that my kids wake up Christmas Day, filled with excitement and in awe of the presents that Santa has left for them. I hope they start tearing them open and shout out each time they find something new.
Of course, it will only be Braeden doing the talking, Ryley will more than likely just enjoy tearing the paper into tiny tiny pieces, every now and then he will squeal when he sees something he likes!

We will then have a special breakfast. Just us. Together. Enjoying the new things. I absolutely love our Christmas mornings. The flurry of unwrapping presents, followed by the slow exploration that follows as the kids try out their new things (we help Ryley with his).

After our morning together we will head out to David's parents house. We try and alternate between families for Christmas Day now, because it chews up the whole day if we have to travel half way around Victoria. The kids love playing with their cousins.

Tomorrow (Christmas Eve) I plan to go get some more fruit and vegies and then I will spend the arvo baking and cooking up a storm! David is on holidays now, so hopefully it will be a lovely relaxing day at home together (although whenever I say that it usually isn't!!).

Just before I go, I must share something funny. Today, while Ryley thought I wasn't looking, I found him sitting down 'reading' a book. He was staring so intently at the pictures and he carefully turned the pages. Hmmmm. I swear he plays games with us.
Braeden, of course already sits down quietly and 'reads' his books. Often they are upside down, but he devours them so quickly.
I love that they both enjoy books and reading so much. Makes me very proud of them.

Ketocal is here!

After lots of stressing and me feeling sick because I was so worried, the Ketocal is finally here! I just got a phone call from our pharmacist to let us know that the delivery has made it to them!!

I am so relieved I could cry.

Now, I can finally start to organise myself for christmas, because, to be honest, I have been so stressed about this damn Ketocal that I lost the christmas spirit a bit.

Saturday, December 19, 2009

Surprise Surprise...

So the Ketocal delivery to Australia has been held up.
I am so shocked by this...no really...can't you tell?
Apparently there is some emergency stock somewhere that the dietician and representative from Nutricia are trying to get. Ryley is listed as needing it critically, but you know, that only really means he will get whatever supplies they can find first.
The dietician said that if worst came to worst we can do Ketogenic PEG feeds another way. She said it is hard work, but we can definitely do it. Oh joy.
I do trust our dietician though. I know that she is doing everything humanely possible to get it sorted for us. Not only is she giving me updates as soon as she knows something, she is also in contact with our local pharmacy (who have also been wonderful) and is breathing very heavily down the neck of the Nutricia representative (who is also desperate to get it sorted). Our Judy is not one you mess with.

So, I wait with baited breath for our next update.

Another story for the crazy files: Last night at around 11:00pm we heard a noise outside and our dogs barking like mad. Turns out it was a kid (around the age of 14-15) trying to pull down and steal our christmas lights. David yelled at him and he started to run off with an extension cord in his hands. He soon dropped it and ran for his life when he turned and actually saw David. Seriously, we have about 5 lights up, just enough to be a little festive and some kid wants to pull them down? This kid shouldn't even be out at this time of night wandering the streets.
Oh dear.

Friday, December 18, 2009

Now, what could I possibly have to stress about?

Let me see.
No Ketocal in Australia until possibly tonight. It then has to be cleared at customs and then distributed to Melbourne.
Ryley will run out on Wednesday.
I *may* get some by Christmas Day.
Oh phew. Only 2-3 days with no food then.
Well, Ryley can starve, that's ok.

Actually, no. It's not really ok.
Considering the Ketocal formula is Ryley's only food source, we kind of need it.
We have managed to get 2 tins from another Mum here in Ballarat. That will only take us up to Wednesday night. Thank goodness she could spare some. I am fairly sure she can spare some more if we are desperate, but I really hope we don't get any more desperate than we already are to be honest (a million thanks to Fiona!!).

It is not really good enough though. Not only do I have that to worry about and follow up with phone calls, I am also still waiting for Ryley's new Mic-Key button and giving sets. Which should have been here..oh..nearly a week ago. More phone calls to make, and then I still get the same response "Oh you should get it next week". FARK...you told me that last week!!

I'm not sure what I am complaining about really.

*Sigh*

Maybe Santa will bring it all for me for Christmas??

Tuesday, December 15, 2009

So where are we now?

It's funny how at this time of the year you start to reflect on the year the was. I start to think about my goals for next year (in all facets of my life) and consider if I have reached any of the things I had hoped to achieve.

After re-reading my 'Hello Little Man' piece, I think back to how long ago I wrote that. Over 5 years ago! So much has happened since then, yet I feel like I could have written that yesterday and it would have still rung true for me.
Are the issues I face still the same? Yes. Pretty much. But there are many many new issues as well. For example, I still get frustrated that people think using the word 'retard' is ok. It is not. End of story. It is hurtful. I know most people in this world don't get that it is hurtful and come up with all sort's of excuses as to why it is ok for them to use. At the end of the day, it is hurtful still. I don't want people in my life that think it is ok to use that word. I figure if people can't understand why that word bothers me so much, then they are not worth me wasting time explaining it. I shouldn't have to justify it.

Another issue we face is the ongoing management of Ryley's complex medical issues. Who understands that? No one, apart from those who are facing similar issues. Yet still, people think they can give me advice and tell me what I should do. Hmmmm. Let me think about that. Um...[insert many swear words].

Ryley's behaviour is increasingly getting difficult to manage. By that, I mean, he has added a "whingeing" tool to his small, but growing reportoire of naughty behaviours. In some ways, I am proud of his ability to recognise that by whingeing in this particular way, he is almost certain to annoy his mother, while probably getting what he wants (if she is smart enough to work it out). Hopefully it is just a phase and he finds another way soon, but boy is it stressful. Having to keep him occupied every single minute of the day is exhausting. But most people don't get that.

So many people judge me on how I am choosing to raise Braeden. I get comments all the time that I should be weaning him. That his sleep problems are my fault because I am still BFing him and I should just let him cry himself to sleep every night. Yeah. I wonder if they stop and think that perhaps I am simply choosing my son first. In such a small snapshot of his life, I am choosing to meet his needs (emotionally and nutritionally) by BFing him on demand. That is my choice. It is right for ME. But it doesn't mean it isn't draining and exhausting for me.
I also have people analyse Braeden constantly and compare him and check that he is 'normal'. After all, once you have one disabled child, it is assumed that it must have been your parenting.

So many issues.

But, you know what. I still wouldn't swap Ryley for anything. I still try and make every day count. I hope and pray that he stays with us here on earth for many years to come, and I hope he stays healthy. I am so grateful that Braeden chose us and that we have him in our lives. With him, he brought a happiness and a light that we never knew existed.

So what will 2010 hold for us? Lot's of fun times hopefully. Plenty of challenges no doubt. But with the love of our friends and each other, no dream is beyond reach.
And trust me, we DREAM BIG!!

Monday, December 14, 2009

Sharing some blog love...

I have been meaning to do this for a while now, and I finally have a few minutes to myself while Braeden is watching Iggle Piggle (I hate ITNG, but hey, if it keeps him out of my hair for 5 mins, I will take it!).

I want to share with you some of my favourite blogs at the moment. I say 'at the moment' because, some of my fave bloggers aren't posting right now, so they will get a mention another time!
These blogs are ones that inspire me, that make me laugh, cry, and want to keep blogging.
So here they are, in no particular order:

Sharalyn, has two blogs: Here and this one She has a son with Autism whom she homeschools. What inspires me about Sharalyn is how she views Autism and the things she teaches J. I love reading her blog because she shares the same ideals as me when it comes to having a person with a disability in your life.

Melissa, is only new to this blogging world, but I just love reading about her daughter Ellie  Ellie has WHS like Ryley, and Mel is still only very new to the world of WHS. Ellie is just beautiful and I am very much looking forward to meeting her in person very soon.

There is another Melissa whose blog I find inspiring too. Despite the battles that Melissa faces, she writes honestly and openly and in doing so, shares her insights into mental illness. Her writing is absolutely beautiful and she is very talented.

Alison is another inspiring blogger who has a beautiful family. I love reading her blog and seeing her beautiful daughters growing up. She shares lots of great information about what it is like living with a child with a disability.

And finally, last, but not least, another WHS Mumma from the US. Knowing Norrah is a beautiful blog written by a beautiful Mum. One day I would love to meet Lauren and her gorgeous family in real life. I think we would talk and talk and talk. I laugh and cry when I read her blog. Her photography is amazing.

So these are a few of my fave blogs right now. I make sure I read them every day, even if I don't have time to write in my own!
So take a look, you might well be inspired too.

Sunday, December 13, 2009

Some photos

Because I don't have much time at the moment to write, I will just put a few pictures up. Every year I attempt to take christmas photos, and every year they end up the same..as in..they never really work out too well.
See what you think...!!












These next two were taken at Braeden's daycare christmas party:




Friday, December 11, 2009

Catching up

Seems like ages since I have been on here! I am still not that well, but feeling better.
This week has been incredibly busy. Ryley's school concert went very well. Ryley enjoyed himself and of course we were bursting with pride. Braeden particularly like the little girls performing their ballet act. He clapped so hard he nearly fell off David's knee. Bit had to get photos because we were too far away from the stage. We got it all on video though!
It is absolutely freezing here at the moment. It is meant to be summer and instead the temperature is the same as what it is in winter. Crazy.
I will write a longer post when I get a chance. In between working late, school concerts, work breakups and late night shopping, I have no time for anything. Probably why I can't shake this flu virus.

Monday, December 7, 2009

Thankyou

I just want to thank you to all of those who have commented, emailed me or responded on Facebook to my 100th post.
It really encourages me to keep writing. It is an honour to have people take the time to come and read about my little family and the things we face.

So thankyou to my loyal readers, and hello to any new ones...

I will be back to post something when I feel a bit better. I have the flu at the moment and I am not a happy camper. Not to mention the fact that this is the busiest week of the year (well it feels like it anyway).
We had two appointments for Ryley today, one with his school to set goals for next year. I will write about it later.
I also have some lovely christmas photos to share from our various christmas parties on Saturday.

I will be back.

As soon as I feel a bit better.

Wednesday, December 2, 2009

100 posts- A glimpse of the past..

I wanted to do a really special post for my 100th post on this blog. Many of you know that we did have another blog, but it got lost in cyber world (we have been able to retrieve some of it).

I wanted to share with everyone some photos that people may never have seen before of our Ryley.
I also wrote the piece "Hello Little Man" when he was 2 and 1/2 years old. I still get a little teary when I read it, because the emotions I was expressing were so raw. I think you will see what I mean...

So first, some photos:

Feeding Ryley some of my expressed colostrum. He is 1 day old.


The day we got home from hospital. One of my favourite photos ever.


I am smiling, but I had just struggled to feed Ryley my expressed milk.


Ryley, aged 4 months old, after his first operation. It was a lensectomy. This breaks my heart everytime I see it. He is so very sad.


Happy 1st Birthday Ryley


Happy 2nd Birthday to my little man!


Learning to walk.



19 months old in both these pictures.

Just before his 3rd birthday


The date is wrong on this one. He would be about 4 years old here!


My cheeky little man (just before he turned 3)

“Hello little man.”


“How old is he?”

The reply that this unsuspecting person will get depends on how I am feeling. The difference between a normal answer, and one that attempts to justify my son’s disability depends on the type of day I have been having with him.

“He’s two and a half years old”

“Oh my god! Aren’t you a tiny one.”

That is the line I have been waiting for. What often results now is a lecture on his disability, which is called Wolf-Hirschorn Syndrome. What begins as disapproving and suspicious facial expressions, on behalf of the stranger, ends with a sympathetic:

“Oh you poor thing-but he looks so happy”.

It is not surprising really, that society has kept the disabled away from the scrutinizing eyes of society. While I now accept the ongoing ritual of explaining my son’s rare chromosomal disorder to people (normally perfect strangers), it is often more difficult for parents who don’t have a diagnosis, or are not coping with the daily challenges a disabled child brings.

What society fails to take into consideration are the ongoing battles that disabled children face in order to get accepted. Parents are faced, usually on a daily, sometimes hourly basis, with challenges that receive very little recognition. Certainly, well meaning people like to offer the phrase that makes people like myself cringe: “Only special people are given special children to look after”.

My response to that is: NO! WE WEREN’T GIVEN A CHOICE! WE ARE NOT SPECIAL! I question constantly people who tell me this, and now enjoy seeing them squirm when I respond by saying that I don’t consider myself special, because I didn’t ask for a disabled child. I wanted a normal, healthy one that would grow up in the image of his father and me. Just because I have a disabled son doesn’t make me a hero, and it doesn’t make me a special person. I simply love my son unconditionally, and make sure that he gets everything he needs in order to maximise his potential, and ensure that every day he has with us, is happier than the last.

Yes, we face daily challenges, and yes we spend terrifying nights in hospital. But when our son achieves a milestone, or makes a new sound, or attempts to do something different, we are filled with such intense feelings of pride and happiness that we couldn’t possibly believe that people think we are special.

It is our children that are special. The way I view my son’s disability, is that we have been given an exceptional opportunity to share our lives with a little person who has been sent to teach us about love and compassion. He is a gift to the world, sent to teach people how to respect and accept each other, no matter what shape or form they come in. My son’s disability has given many people new meanings in their lives. I watched as my Grandfather (whom I had little to do with growing up), become a big part of my son’s life: “If Ryley can have an MRI and not get upset, so can I”. I watched as my friends accepted my son, and encouraged their children to play with him. I watched as an entire football club rallied behind my son’s father and constantly ask how the ‘young fella’ was.

Life wasn’t always this easy though. Suddenly we got thrown into a world we barely knew existed. The medical world is a different club, to which you don’t particularly want to belong to. Endless testing, traumatised all of us, and continues to be difficult. Weeks filled with doctor’s appointments became the norm, and we felt relieved if we had a day to ourselves. Therapies began, but there was little to be done initially, and attempts to join a developmental playgroup, left me shattered.

Finally, on our road, we came to a turn off, and we took it. We ceased the doctor’s visits and the therapy, and spent time as a family. It didn’t seem important anymore to spend so much time trying to find answers, when our answer was in front of us all along.

Our son was disabled.

Despite the doctor’s reassurance that he had just had a rough start, we knew deep down that they were wrong. When finally we faced the reality of the situation, life became a little easier. Instead of grasping desperately at the glimmer of hope, we began to see things in a different light.

If life was going to be a constant stream of doctor’s visits, we opted not to follow. We decided that we wanted what was best for our son, not what was best for the medical world. So we just stayed ashore for a while and progressed along at our leisure and enjoyed our son for who he was, not for what the tests showed or the doctor’s said. We then got to a point where we wanted some final answers, and we went back to the geneticists who confirmed our own suspicions.

Our son had Wolf-Hirschhorn Syndrome, which he had inherited from my balanced chromosome arrangement.

Finally armed with a label and an identified syndrome we felt ready to take on the world. Although this did not change how we viewed our son. He was the same little kid to us; we just now had a formal explanation, one that was acceptable to society.

Having a diagnosis has helped us, as we have discovered that many of our son’s characteristics match the syndrome. It is nice to be able to talk to other parents, as far away as the UK and the USA who have children with this rare syndrome. There are other children in Australia also who have this syndrome, though the numbers are quite small. Being part of a support group has helped us share an identity with others, and we have become part of another exclusive club, this time one we want to belong to.

While we have accepted our son’s disability, he is still going to be facing numerous battles in his life. These are largely due to the poorly educated members of our society who have had no contact with the disabled. It’s to those people I want to shout: Stop! Pay attention! This child can teach your far more about life than anyone else!

Changing people’s attitudes is hard. There are still going to be the strangers looking at my son and thinking I couldn’t possibly be feeding him enough. There are still going to be the relatives that are jealous of the attention my son gets. There are still going to be thousands of people that just don’t get the emotional turmoil we, as parents of children with disabilities, go through every hour of every day. But at the end of the day, we simply wouldn’t swap our children for anything else. Maybe we would wish for better health and a longer stay with us on earth, but the intense feelings of love we experience and the fierce little fighters we have the privilege to know, makes every second more important than the one before.

Dec 3rd


Let us celebrate those who have a disability. Let us acknowledge that they are People First.
Let us strive for acceptance and understanding.
May we recognise abilities, and not focus on what people can't do.
I love someone with Wolf-Hirschhorn Syndrome.


Tuesday, December 1, 2009

Yay December!

Finally it is time to put the christmas tree and decorations up!! Although we won't be getting our tree until Thursday, at least we can put the decorations up!
I can't wait to make some yummy christmas treats, and to put the lights up. We have already been giving the Wiggly Christmas DVD a workout!
I love creating the christmas magic for the boys. Ryley loves the song 'Jingle Bells' and both the boys love dancing to 'Go Santa Go'. The first thing they did when they got up this morning was put their santa hats on!!So very cute.
Not that we forget about the true meaning of christmas either and do have a nativity scene and we talk often about why we actually celebrate christmas.

So stay tuned for some festive photos...

And stay tuned for my 100th post. It is going to be a special one.

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