Wordless Wednesday.... Liam boy in Miracle World edition Part Two!!

Joining Trish @ My Little Drummer Boys for Wordless Wednesday *insert big smiley face*.

Ok so I'm going to cheat and I am going to type a few words here.

These photos are of my eldest son Liam who today for the first time in his life walked "independently".

I can't thank the Cerebral Palsy Alliance/Go Mobility and The Lion's Club enough for giving my son this amazing chance to feel closer to normal. To be able to walk among us....

And somehow I am having trouble loading the video so here is the youtube link HERE

Cherishing Your Cherubs Project Monday Link Up: Remember...

This is the 2nd part of Naomi from Seven Cherubs Cherishing Your Cherubs Project Link Up.
In this post we are to write about something we REMEMBER about our children. It could be their birth story/ies, or a moment you shared with each one, or a major achievement they accomplished.

I have decided to do three different forms of rememberance and chose one for each of my muskateers.
For Liam I will recount when he came home from the hospital and I was a first time mum.
For Jack it will be when he was recovering in hospital from his Open Heart Surgery.
For Evangeline it will be a moment that I found defining in regards to all three of my cherubs yesterday.

Liam
It had been ten days. Ten days of pain, fear, worry. We nearly lost you. I still don't think I fully understood that. I was in a daze.
And here we were on day 10 arriving home. I was nervous, but most of all beyond excited. I was a mum and I had my precious little bundle with me. You were so snug in my arms. Such a bubble of cuteness, all rounded and soft and smooth.
The most vivid memory I have of those first few days at home were the fact I couldn't nap, even though everyone advised me to: "Make sure you sleep when baby does". But I just couldn't. I was bursting with sheer delight. I just wanted to watch you as your chest rose and fell. As you snored, your little baby snore. My eyes were fixed on your little body, your cherubic face. I didn't want to miss a beat. I seriously had to pinch myself. My whole life I dreamed of being a mummy and here I was holding my very own babe.
You were and still are the perfect blend of your daddy and myself. Of course you have my cheeks, the ones that need their own postcode. Bulbous beyond compare. Although I think your sister can now give them a run for their money.
Your hair was as white and pure as the cliched snow. I had never seen a newborn with white as can be hair. And here you were my little Norse god.
At that point we had no idea what lay ahead of you or us. We were just intoxicated by the love we felt for you and so the past and the future didn't even factor into our mind.
Those first few days at home were magic. I am glad we did not know anything at this point. We got to enjoy you for just you Liam. There was no Cerebral Palsy, no Special Needs. Not that those are bad things, but they are extra 'things' that will always be apart of you now, just as my diabetes and my depression will always be apart of me. Baby Liam. The most beautiful baby to have ever existed.

Jack
It was day three post op. You had made such great progress after your Open Heart Surgery. Most of the tubes and wires had been removed as your recovery was steaming long. Daddy had to stay at home with your big brother Liam, whilst you and I were sleeping next to eachother in the Heart Ward.
For a 5 month old you were so placid, so very calm.
I sat next to your cot and would lean my head next to yours on the mattress.
I was exhausted, both emotionally and physically, but your relaxed demeanour soothed me, and encouraged me to let go of the stress. It was as if you were comforting me! I was the baby and you were the adult.
I dressed you in some super bright onesies. They had to have the feet cut out so a monitor could be attached to your toe, testing for heart rate, blood pressure etc. I wish I had kept at least one of them. But I did take lots of photos of you in them Jack. I took lots of photos of you and your chest. You even managed to smile for a few of these shots. What a champ.
I even made sure to take photos of your chest before your surgery, because that was going to be the last time you would be scar free.
While other children sobbed, whinged, screamed through out the ward, you just laid there as cool as a cucumber. The coolest customer. I cannot thank you enough for making the experience for me much less painful than it could've been.
Now you can say not only do you have a wicked scar, but you have the coolest attitude any human could have in that situation. You. Are. One. Cool. Dude.

Evangeline
Every morning at breakfast time I line all three of you up. Evangeline, you are in your high chair. Jack is in his booster chair. Liam is in his wheelchair.
There is a mountain of toast. A vegemite explosion. Or at least that's what appears to have happened if one was to look at the aftermath.
As we all stuff our faces I take the opportunity to perform for my captive audience. You are always the most attentive. Hanging off my every word. Your big brown eyes with eye lashes for days, study me, work their way over my face and follow my waving wildly arms and hands. You are not yet a year old. But you are already doing so much at this age. Doing more than your big brothers did at the same age.
On this particular day I started to sing "Old McDonald Had a Farm", as we do at least once a day. It seems to be everyone's favourite song in this house and I love to keep you kiddies happy, thus I will sing Old Mac until the proverbial cows come home. When it came to the line: ".. and on that farm he had a..", I looked at Liam and Jack, waiting for some sort of sound or movement. I mean I had been working on both their speech therapy using this song, so I was hopeful for a miracle response.
"DUCK!" you chimed.
My jaw dropped. I quickly picked it back up.
"Yes, good work Evy, he had a duck", I beamed.  I was blown away and so proud of you. But this was the moment I knew would stick in my mind like honey, so sweet yet so messy. You see this was the moment you 'over took' your brothers. This was the moment that their 'diffability' became glaringly obvious in our sheltered little bubble of home. Yet it showed me what a clever little baby girl you are and that is what I know we will always focus on from here on in, rather than comparing where each of you were at that same age.

Each one of you are clever and amazing in your own way. And I want you to all know how proud I am of you.

Wordless Wednesday.... Liam boy in Miracle World edition

Joining  My Little Drummer Boys for Wordless Wednesday.

Middle Child Syndrome doesn't exist in our house...

My husband is a 'middle child' and so is his mother. I always worried my Mr Middle aka Jack would suffer the "Middle Child Syndrome", because I can see it does happen to some extent. The eldest gets the attention for being the first, 'paving the way' and so on. The youngest gets the attention because they are the 'baby' and are allowed to get away with murder. Then there's the middle child, who can often get somewhat forgotten about....
Of course with our eldest, Liam, having such a severe physical disability there was always that worry of focussing much more attention on Liam than his siblings. So it was something I was aware of.
My husband still suffers from it a bit. And I remember my mother in law saying "poor Jack will suffer the middle child syndrome too". My inner monologue response was: "Not if I have anything to do with it!", and on the outside I did my usual nod and smile, because I am  a wuss polite.
Funny thing is, Jack had his own thoughts of: "Not if I have anything to do with it!" He went and got himself a Congenital Heart Defect, thus major attention seeking ensued with Open Heart Surgery. Then when we had a sigh of relief after it was all over, he must've thought "Damn I ain't getting this middle child syndrome thing" and it was revealed he has Autism.  Now that's a great way to not be ignored!!
Looking at my blog, so far Jack and his Autism have reigned supreme. But ask most families who have a child on the spectrum and they will say that a lot of the focus, planning and decisions are around the child with ASD. It isn't spoiling them, it is making life much easier and less of an uphill battle for the entire family. This is not to say Jack is more difficult than his brother or sister. He is just very different.. in a good way (and sometimes in a not so good way).
The ironic thing is, is that Jack wouldn't even notice if there was a bit of "middle child syndrome" going on. Well not at this stage. Although he does have an extremely close relationship with me and does show signs of jealousy if I am focussing on Liam or Evangeline. But overall he is happy doing his own thing and doesn't want attention from anyone else.
I am extremely aware of sharing myself around the three. I do spend a lot more time and energy on Jack and I do feel guilty about that, but at the same time I know the effort I put in with Jack over the next few years will be the greatest investment ever for not only him, but the whole family. And besides Liam thinks the sun shines out of Jack's butt! So Liam doesn't get too jealous when I spend time playing with Jack. Instead he just laughs at all the antics, which in turn makes me smile. Then there is Evangeline... all she will ever know is two brothers with special needs Superhero powers! I often worry what kind of life she will experience in her position. How it will affect her. I am hoping it will make her one of the world's most understanding and empathetic humans. I do take out time for her, so we can have our 'girly' days, but she will definately have a lot more on her plate than most girls.
So there you have it. There is no "Middle Child Syndrome" in my house. But I may have to come up with the syndrome name for youngest sibling with exceptional brothers... we shall call it Evangeline Syndrome for the time being *insert winky face*. I will try to feature my dear daughter a bit more in my blog*, because I don't want her reading this when she's older and having a bitch fit about how little she featured adore her to pieces and she needs to be celebrated too, as all our children do, whether they have additional needs or not.

*next post will be an Evangeline special edition

Wordless Wednesday....

I am joining My Little Drummer Boys and Kate Says Stuff  for 'Wordless Wednesday'. Bear with me, I've never done this before and I hope I do it right *insert winky face*

These three photos sum up my three muskateers perfectly ! (sorry I put some words in woops!)

My children's hugs...

I was discussing with my friend J about the hugs I get from my kids. Well actually they are my interpretation of hugging...
You see with Liam, he can't 'wrap' his arms around you to hug, but when you give him a cuddle you can feel his arm muscles tighten and his arms become quite stiff. I call this a massive bear hug, and I relish those from my big boy!

Liam and his bloody huge grin

With Jack it gets a bit complicated, because you may go for some close contact and he could push you away, but then later you may just be standing there minding your own when bam! Jack wraps his little self around your legs and then choofs off again before you've even realised a 'hug' took place. Then there's the times where you go to embrace him and he lets you. I call them reciprocated hugs, even though he doesn't hug back... he is letting me do it, so I take that as a huge sign of affection. Over time I've been getting more and more of those and less of the push aways. I do those hugs with Liam too because he doesn't always have the strength to 'hug' me in his way, but I know that it is reciprocated because he usually has a bloody big grin on his face :-)

Jack getting ready to bite kiss

My little girl is funny because she wants to be held but doesn't want to be hugged, if that makes sense. Everytime I go for the squeeze she wriggles about and seems to want to 'get going'. But I do get a snuggle cuddle with her when we lie down for a nap together or when she screams her way out of her cot and into mummy and daddy's bed to sleep the rest of the night.

I just love rubbing my nose into those collosal cheeks

With all three they let me smooch on their big, plump, juicy cheeks. And that is the most scrumptious part of being a mummy, for me anyways.
After describing these hugs to my friend I realised that some people may beg to differ on what I deem a 'hug' or a 'kiss' (all my children bite me when they 'kiss' me lol). I know my versions must seem so unconventional, but these 'hugs' and 'kisses' are totally normal for me and I cherish every single one of them *cue corny 'aaaaah' sound from sitcom audience*

Don't ever, ever, ever refer to him like that...

I had no idea what to title this post, but that's what I came up with. I still don't know how to feel about what happened today....
Let me start with the fact that I don't get much, if any, one on one time with Liam these days, so today I dropped the two little ones in Occasional Care at the local shopping centre and spent three hours with my big boy. Liam was stoked once he realised he had my undivided attention and that we were about to do an old tradition of having a very sweet and yummy lunch at a cafe that enabled us to people watch (one of his favourite past times). I had our good friend J with us (you know the undiagnosed Aspergers bestie I was telling you about ) and we were enjoying our delicious lunch of toasted banana bread and choc mud cake. Liam was beaming from ear to ear, but at the same time concentrating on each person that walked passed the cafe. I was mid conversation with J when a lady that had been sitting near us came up to me and said "I just want to say what a great job you do" and some other words to that effect. It all became a bit of a blur after that. I thanked her but said "I am so lucky to have my son, he's awesome... high five Liam!" and Liam looked at me like 'errr what? who the hell is she?'. Anyway I am not angry at the lady, clearly she was trying to be really lovely and nice and all that, but it made me sad all of a sudden. Like she viewed Liam as if he was a burden, almost like he didn't fully exist, because she had said all this in front of him and only acknowledged him when I said he is awesome and that I was indeed the lucky one. I felt sick because I never view Liam as a burden, he is my son! I love him to infinity! How could anyone view my Liam that way, as if he is an inconvenience?? I guess I've been living in a warm cosy bubble... I surround myself with people that see Liam just as he is... awesome! And I guess I have also blocked out these moments successfully before.... Until today. I still have a tear in my eye. An ache in my heart. I'm really hoping it's just hormones or lack of sleep.

After this incident today I then started to remember some comments from other times. Like last week when a boy of around 7 or 8 years old exclaimed as he pointed to Liam "Poor boy, look at the poor boy". I know this boy wasn't being mean, but I wanted to say "No he is not a poor boy, he is a way cool boy who loves action movies and ice cream, laughs at his siblings misfortune when they fall over, who high fives you cos that's how he rolls, not just in a wheel chair", yet I just walked away trying to push the comment to the back of my mind. Well we know what happens to 'pushed back comments', don't we?? Yep they come back out at other vulnerable times.. Like today.
Another 'pushed back comment' that came hurtling it's way to the forefront of my mind today came from a conversation I had at a children's birthday party. I was having a 'catch up' with a lady I had met years prior to having children. We had gone out to a few events where of course I was always the life of the party. Anyway I was filling her in on Jack's ASD and she responded with something along the lines of "Wow one child with CP and one with Autism, you must be having payback from all your hedonistic days in your early twenties!". At the time I gave a forced laugh, shrugging it off. When really I should've pointed out to her that my children are not a punishment. That they are the biggest blessing in my life. Did she not realise what she was saying? No I guess she didn't and she probably would be mortified if she knew how much she hurt me.
Thinking about these incidences I worry people think children and adults with Diffability are a punishment or a burden or anything so demeaning. When they are anything but a punishment! Yes they make life a bit more challenging at times, but there's a difference. And may I add that we can all make life challenging at times.. just saying *insert winky face*

School Reports...

We got Liam's school report (half yearly) this week. I was very happy with it. But I've noticed parents can get disheartened by the results and I wondered what was different with Liam's report to other children's... Then it hit me.. It's about expectations and once again that whole "normal" thing. I want to reassure parents that whether their child is 'acing it' or 'just passing', it is all about perspective. We need to look at the positives that are written about our children, rather than focus on what they are doing 'wrong'. Yes it's good to get an idea of where your child needs help, but to dwell on the negatives is just going to end in tears. I didn't look at Liam's report and say to myself "oh but other children his age would be doing something more..", that would just be pointless and painful. I looked at each achievement he has made and did a little celebratory dance in my head. 
I also look back at my school reports from primary (elementary) school... I sucked big time at math. BIG time! The school even arranged for a tutor/aid to help me with my mathematics once a week. I kept sucking. My mum tried to help me, but threw her hands up after awhile because I guess it was like talking to a brick wall. I just didn't get it. Fast forward to high school....
In year 8 I ended up in the 2nd top Math class.. yes people! Me! In top math! So don't look at your child's report and say "oh no this is it. This is what my child is capable of for the rest of their life". It is simply a snapshot of what a teacher has captured of that child during a few months to a year.
The world is always our children's oyster!!! Hang on! The world is everyone's oyster, no matter what age or diffability!!! Now go make some pearls people!!!

The House of Miracles and Amazement...

As any parent of a child with additional needs/ disability will know, there is bound to be some amazing unbelievable achievements by our children that we get to be blown away by. We are given a possible prognosis and then everything positive we experience after that is just fricking amazing!!
Liam for example has issues with his mouth, tongue and lips, so when it comes to food, he needs it thickened up (we feel very lucky he is able to eat orally, as tasting food is one of Liam's biggest pleasures in life). A few years ago when it came to drinking Liam could only drink out of a baby's bottle and I really thought that he would be drinking out of a baby's bottle for the rest of his life. I tried and tried to get him to 'sip' from a straw (I used a poppa and would squeeze the juice up to "tempt" him), day in and day out... and nothing, he still needed the bottle. Then one day while we were watching a dvd together and I was trying to get Liam to 'sip' from the straw, I was looking at the TV but holding the straw to his lips, I felt this 'movement' in the straw and looked at Liam, he was SIPPING!!!! You have no idea how excited I was!! Ok you might. But I seriously have the moment burned brilliantly into my memory. Angels were singing I tell you!!! A major orchestra was blaring! My heart flew to the moon and back! Reality check is that everyone in the 'mainstream' can do this, but double reality check, it wasn't a given for my son. I still get pretty stoked thinking about how my big boy Liam can sip out of a straw and hasn't touched a baby bottle since!
Ok so with the way things have been going with Jack, development has been slow, but of course waaaay faster than Liam . So I have been enjoying all the awesome milestones of crawling, walking, self feeding and clapping. Even though they've been late according to the whole 'milestone' generalisation, I have enjoyed every one of them. And now we know that Jack's course of development is unknown (haha kind of an oxymoron). We have no idea how he will progress, what will be his strengths and what will be his weaknesses (and I guess this is true of all children, no matter whether they are 'mainstream' or have 'additional needs'), but in Jack's case he may be good at a very specific thing and yet be unable to do a large number of things... we just don't know. Or do we..... Well yesterday I got a glimpse into what maybe one of his strengths. I was just chatting with a good friend who was visiting (with flowers no less, yes I've claimed all the awesome people as my friends hehehe) and Jack just started counting (toddler words but it was definite that he was counting), I looked over at him and he was reading through his counting book. WTF!?!? My son reads and counts??? Since when??? Aaaaah the beauty of Autism. He can't ask for his juice or biscuit but he can fricking count!!!! Once again my heart flew to the moon and back!!! I'm still on cloud nine with it!!
Parents of children with additional needs have moments of "why? why my child? why this?" but we have long immmense awesome sessions of "hell yeah that's awesome!!! how amazing is my kid!!!!".
I am not saying 'mainstream' children aren't amazing or wonderful... otherwise Evangeline would have my guts for garters *insert sitcom audience laughter*. But ALL children are amazing, we just get to see it in a different light. And now I get to experience this on 2 different levels. I am taking this as a blessing. I do indeed live in the House of Miracles and Amazement.

Life in pictures...

I love photographs. I love looking at other people's photos, I love looking at my own and I love sharing them. Photos can be both very revealing as well as very deceiving.
I thought that I would do a post of parts of my life in pictures today. Just to give you a glimpse into my world. Sometimes photographs can say so much more than words.

My mum when she was pregnant with me, 1979

Mum and I about 6 or 7 months prior to her passing, 1997

My university graduation with my Knight in Shining Armour (the next day I proposed to him) 2004.

My first child, Liam, when he was 2 days old. 2005

Our wedding day. Liam was a lucky little boy to be witness to our official nuptials. 2006

Liam's 1st Birthday. 2006

A flower from one of the many beautiful bunches we received after losing Dylan. 2008

Our 'early bird' Jack (born at 35 weeks gestation) when he was 3 days old. 2009

Jack after his Open Heart Surgery. 2009

The Christmas gift that keeps on giving... my two favourite boys, Jack & Liam. 2009

PINK!! I finally got my little girl, Evangeline. 2010

Well there you have a bit of my life in a nutshell in photos... It doesn't scratch the surface really.

As I blog on I will try to add images that are important/relevant to what I am writing about. 

I also would like to share my love of taking photographs and show you all my artsy fartsy side.
I urge you to take some "relax" time looking back at old photographs you have, of your self, of your family, friends and so on. It will definately bring back a huge blog of memories you can write in your head.

I'm back and I'm armed with Frangelico...

The kids are in bed and I'm "relaxing" with a few Frangelico on the rocks.
I went for my walk. It was fresh to say the least. But sometimes you need that chilly breeze to hit your face and wake you up a bit. You know when you walk around in a bit of a daze, not sure what to feel or think, then there's that gust of wind that just slaps you in the face and says "wake up!". Well I'm awake. I guess I've been awake this whole time...
This news is good and it's bad. In the words of someone I spoke to today "Congratulations and commiserations". It's that relief from finally knowing what is going on with Jack, and it's that grief that every parent who has had a child diagnosed with a 'disability' needs to go through. Although I want to change that word/term 'disability' to 'diffability' as in different ability. That's it I'm writing into Oxford or Macquarie Dictionary and demanding that they include my new word "DIFFABILITY".
Some people may ask why am I somewhat shocked from today's events. I guess it's like being told you are going to get kicked in the face, and you prepare for it as much as you can, you think you're ready then BAM!! you are shocked they went through with the kick and then the pain hits, even though you braced yourself 100%. I think the pain bit hasn't even kicked in.. I'm just in shock. I know it may be hard to understand my shock unless you've been in the same position. I know this because at one stage I was the person listening to the stories of parents who had children with 'developmental delays with autistic traits', who were shocked when they got that final diagnosis. I thought to myself ".. but they knew..". Hmm not exactly. They were just discovering their child and what their child may have. It isn't until the professionals put it into reports, into solid black and white words that it becomes their life.
I am the first to say how bloody lucky I am to have my awesome children. And Jack is the business! I wouldn't change him for the world. Yet having said that, this is not the everyday experience every parent goes through, and believe me I know this is not going to be a smooth ride. It's funny though, I worry people will think how strange that I am grieving this, the fact I have a child who cannot walk but Jack can, I have a child who cannot feed himself, yet Jack can.... Yet any other parent who has been told "Your child had Autism", can break down, cry, grieve. I feel like I shouldn't because I did get the child that is self mobile, that can feed himself. Oh I know I need to cry, I need to grieve. I'm afraid it's going to hit me like it did after Jack was diagnosed with the congenital heart defect Tetralogy of Fallot... only after he had the open heart surgery did I fall apart fully. I came undone at the seams. It's good that I realise this and maybe I can let myself "undo a few stitches". I give myself permission to cry like a baby... but at the moment I can't.
Drinks break people... Going to pour myself another Frangelico... see you in a bit..

These are a few of my favourite things..

Come on sing it with me!!
 I thought I'd do a little list for tonight's blogging.. of my favourite things. Remember Carson Kressley on "Queer Eye for the Straight Guy" and his term zhushing? Well I'm zhushing my soul today *insert smiley face here*

• Having coffee dates with my eldest son Liam. He loves it! We share cheesecake and cream as we people watch and chat (well I do the chatting, while Liam rolls his eyes laughs at my wittiness). This is a tradition we started from when he was a little wee bubba. It started at Starbucks where the wonderful people who worked there knew Liam by name and our order off by heart. It is now a bit of a rare occurance, so when I ask him if he wants to have a coffee date at the shops with me he waves his arms madly and gives me a great big massive grin.
• Spending time in "Jack World". Oh it's the business!! Whether it's on the trampoline bouncing and rolling around; or running through sheets/blankets (one of his favourite games! and it is a buzz, I recommend you try it people!); spinning around and getting wickedly dizzy (somehow he walks better than me after it); or making funny sounds/noises, "Jack World" is always fun. It's when he looks into my eyes I get this electric bolt through me, (because usually he only gives fleeting eye contact when he wants) so when he makes real eye contact, a magic connection is made and my heart fills like a balloon I almost pop!
• My lazy 'nap times' with Evangeline. We just snuggle up to eachother in bed and I feel that beautiful Mother and Daughter bond. She smiles her 'crinkled-up-nose' grin, says 'mama', and I'm complete.
• I guess I better add something about the hubby.. hahaha. Well he would totally get that. He likes to tell awful jokes and sometimes some really good ones. I love that he makes me smile at least once a day without fail. I think he especially loves the challenge of making me smile when I'm sad. And not a day goes by without some sort of double entendre joke or innuendo (in-your-endo!), and I must admit I'm just as bad at doing that too. If you can't be silly and in our case dirty, at least once a day, well that's a day wasted really.

That's just a taster of  my favourite things. I do have a long list and it will keep growing over time too. Aaaaaah I feel better already. This kind of feels like an Oprah moment. Now for your turn people! Even if it's just a list you pop down on a napkin, I recommend making these favourite things more of a concrete concept, something you can look at and smile about. It will also train your brain to think along more positive lines. We don't realise how much of our minds activity is wasted on more negative or 'blah' things and how it can affect our demeanour in our everyday lives.
Get those rainbows, lollipops and sunshine out people!!

Diagnosis... part 2

On this path of diagnosis we are on with Jack, I am having flashbacks to just before Liam was diagnosed. In particular the whole "Are you sure? Really? What makes you say that? he looks normal?". I am then put in a position to list all the 'strange' things that he's doing or the things he's not doing, but should. Which then leads to me feeling like I'm betraying my child by talking 'negatively' about them. I feel like a terrible person who judges my child and points out all their 'flaws'. But then I slap myself in the face (figuratively speaking of course) and say "You are trying to help your child by finding out what is happening and how to help". And that is what happened with Liam. I got him diagnosed early (6 months old) and we could get access to all the therapy and help we needed. I also had an answer to why he wasn't developing like 'normal' (yes, yes, I know... what is 'normal' anyway blah blah). But before that all important diagnosis I had people saying I was being a bit 'dramatic' suggesting he have Cerebral Palsy.. Yes I really wanted to create drama by trying to diagnose my child with CP. Pffft.
Now it's happening all over again. "You really think Jack has Autism? I don't see it"... Funny that, because people with Autism don't tend to wear a badge or a t-shirt saying that.. But I may look into that later. The worst part was people were trying to blame Jack's developmental delay and Autistic traits on Liam, oh and not just Liam, but more to the point ME! Ok I know I'm not the perfect mum (um nobody is... just putting that out there), and yes Liam needs more help than most children, but the thought that I had somewhat neglected Jack so he wouldn't talk or give eye contact etc, well that very much hurt me to the core. I played with Jack, I sang to Jack, I was a frigging clown for Jack!!! But I questioned that after people suggested my focussing on Liam caused Jack's problems. I fell apart at the end of last year when we started this journey. I felt sick to the stomach. I really pride myself on being a loving, caring and very present mum. And here was this possibility that I was the cause of Jack's delays and traits. Luckily after I hit rock bottom mentally about it, I picked myself up, dusted myself off and neglected the housework and then went to town on speech therapy with Jack. Looking back I KNOW I wasn't the cause, and neither was Liam. Jack was always a little different, I just didn't want to see that because I was so desperate for 'normal'. Denial, not just a river in Egypt they say.
People also offered up the idea that may be Jack was copying some of the kids we see every week through Liam's old playgroup. Jack can't even copy me, if you know what I'm saying. How does one copy: lack of eye contact? or certain stims ?
Another interesting thing is that when people question Jack having Autism it's almost as if they are saying it's an insult, like I'm calling him a 'dickhead'. Autism is a condition, it is not an insult. What is an insult is not getting help for my child. That's insulting to Jack as a human being. He has every right to the best chance in life, as does his brother Liam.
Oh dear I sound a bit ranty and vent like tonight... Sorry people, but it's something that's been playing on my mind and I really needed to get it off my chest. I promise next post will be a bit more light-hearted.. maybe.

Planking...

Yes people, I am going to mention this new phenomenon in a post *shock horror*.

I was trying to figure out what the hell this planking was about and most of all WHY? I even began lengthy discussions with my husband over it. I was quite annoyed at him for pretty much defending it. I'd ask "why??" and he'd respond with "Why not??". I was dumbfounded that people were taking the time to do this and that it was making news. I actually brought it up at a get together of some of my friends and one of their partner's pointed out that it was obviously something worthy of discussion because 'duh' I was indeed discussing it *forehead slap*. So true. I was taking the time to think about it, ponder it, analyse it and then that evening I came home and the epiphany happened. Hubby and I were playing with Liam and by accident we had Liam 'planking'. Liam's Cerebral Palsy renders his whole body very stiff at times, especially when he gets excited or tries to move. So when hubby picked him up over his shoulder Liam immediately became like a 'plank' and I squealed "wait! let me get my camera!!!" *Click* the awesome plank photo was taken and I was hooked!
It is what it is... silly, fun (as long as it is done safely and with common sense). I almost liken it to a philosophy to live by... don't take it all too seriously, don't over analyse and just remember to smile/laugh when you can.
I also think it has something to do with a sense of community, connection and belonging. Maybe society is just becoming too disconnected and people don't know how to relate to eachother anymore, and this is a way of bringing that back? maybe not...
All I can say is, kick back, relax and then lay face down, stiffen up and get your plank on bahahahahaha.

Being separated from your newborn...

This post has been inspired by recent events happening to a friend of mine. Once again I won't name names or discuss any identifying details of the friend. But I will mostly reflect on the similar event that happened in my life...
In September 2005 I was laying in my hospital bed, doped up on morphine. The paediatritian who was on call at the time came into my room to see me and tell me there was 'something wrong' with my baby. I was not myself at this point due to the drugs and the traumatic experience prior to this moment. I was numb, I was blah, and I hated that. I wanted to be upset, I wanted to cry. The dr then told me Liam needed to be airlifted over to a Sydney hospital while I had to stay at my local hospital. It was very surreal, pretty much like a dream, or more like a nightmare. I was wheeled up to the Special Care Nursery to see Liam being placed into a special humicrib for transporting. At this point Liam had already experienced several seizures and apneas. It was vital that he get to the Neonatal ICU in the city as soon as possible.
I wasn't able to even hold him at this point. All I could do was watch helplessly as my bubba lay there struggling for life, hooked up to all sorts of machines, wires, drips etc. This was certainly not the way you expect to experience the beginning of motherhood.
Fatherhood started differently for my husband also, but with a much more terrifying experience. He took the helicopter flight with Liam and some Dr's and nurses. The first flight my husband had ever taken (to this day he hasn't flown again) and he endured the horrendous experience of watching his son go blue, stop breathing and had to be revived over and over again. I still don't know how my husband did it. I would've just fallen apart!
Meanwhile I was back in my hospital bed staring into space. The nurses had given me a beautiful photo of Liam to keep by my side, which I now have framed in my house and still stop to have a look at it on a regular basis.
When the morphine was beginning to wear off I was able to shed tears and was so thankful to be able to. I also started madly pumping breast milk with a manual pump. I wanted to be able to give Liam everything he needed and I was determined to send whatever colostrum/milk I could. The lady sharing the room with me was amazed at how dedicated I was, just sitting there on my bed for hours pumping like a mad woman. That was difficult too... sharing a room with a lady who'd also just had her baby. But in her case her baby was nestled in her arms. Oh I ached to be holding Liam, snuggling him, loving him.
On day 3 I was told I could have gate leave from the hospital and travel to the city to visit my bubba. I was still very sore and fragile from the c-section, but I was so determined to see my beautiful baby boy. What hurt most was that before I got to see him, other people had been visiting him and telling me about him. I was extremely upset about that. I was the one who was meant to tell everybody how my son smelled, how soft his skin was, how his hair was silky and beautiful (this one person in particular told me how they had brushed his hair!! that hurt badly).
When I arrived in the NICU and saw Liam I just fell apart, balled my eyes out. He was like a living doll but hooked up to so many things. I couldn't just scoop him up into my arms, which is your first instinct. I felt like he wasn't mine because he was under 'their' care. I was in awe of his beauty when I was able to touch and caress his peach skin.
The nurses and dr's there were amazing. It was 24 hour care with 2 Nurses/Dr's per baby. I felt a bit better about the situation. The hard part at that point was having to go back to my local hospital and leave Liam there.
Luckily day 4 they discharged me so I could stay at the hostel attached to the hospital Liam was at. And by day 5 the Dr's were happy with Liam's progress that he was sent back to my local hospital. Unfortunately because I was discharged from that hospital I couldn't stay on grounds with Liam. So once again we were separated, but there was the luxury of being able to visit him in the Special care Nursery whenever we wanted.
Day 10 we were allowed to stay in the hospital with Liam overnight to see how he fed fully breast fed. At this point he was off all medication and by day 11 was given the all clear and we could finally start our journey as first time parents....
well that's for another post, another day...
My story isn't the typical start to motherhood story, but it does happen to people. There are a number of parents who have had the horrible experience of their newborn needing to be in Special Care or even worse, be sent to another hospital for Intensive Care. That experience stays with them forever. The good thing is that in this day and age a large majority of those newborns are discharged from special care/ NICU in good health. So I like to take the time to be grateful for amazing technology and advances in medicine. We live in a great era!!

Diagnosis...

Just a quick post on my experience with diagnosis...
The process of Liam being diagnosed with Cerebral Palsy was quite quick. I liken it to gettting my arm chopped off with a chain saw really quickly. The process we are going through at the moment with Jack and Autism Spectrum Disorder is like having your arm chopped off with a butter knife.... It is much slower, there's a bit of hope the arm may stay on and the cutting will cease, but then the cutting continues and you just wish someone would hack it off!!!! I'm ready now!! Tell me now!!! I will be upset I've lost an arm but I'll know where I'm at and can move forward. Man I'm all about the moving forward. Ok maybe I've moved forward already, in my mind the arm is removed and I just want the professionals to catch the hell up.

The Brain..

What an amazing thing the brain is..
The fact that we know so little about it and what power it holds.
I often think about Liam's brain and how it has been damaged and how that effects him and his life. But also what we can do to change that. I've read up on intensive therapy and Hyper Baric Oxygen Therapy and every kind of therapy. It's amazing how the brain can actually change, it is not fixed. But I have also weighed up the use of intensive therapy in a person's life and the quality of that life. Do i really want to push Liam to the limit? Take away the fun of his everyday existence. Ok I can see this will be a scatterbrain post as I want to talk both about the complexity of the brain as well as therapy and it's effects on the person and their family.
I think this post is leaning now towards therapy versus everyday living. I would like to think I have struck a balance with Liam. We try to incorporate therapy where we can but I would say the joy of living is of the utmost importance in our house. Liam is a happy soul and I don't want to push him to the point of no longer being that happy soul. People may argue I am not leading him to his full potential. But what is that? It seems those who are able to 'reach their potential' end up being bitter and disillusioned anyway. Depression is so common these days that I worry if my children were to be 'normal' they may suffer from depression. Is that a silly thought? I don't know.
I've also had a few wines, so this post may get deleted in the morning hahahaha. But at the moment it totally makes sense and is relevant...

Where to start???

Okay so I have no idea how this will pan out, or play out... sounds like my life really lol. Oh dear I promised myself there'd be no 'lol'ing.
It's probably best I start with who I am...
Purely and simply... I am a 31 year old woman, married to my Knight in Shining Armour, with whom I have three beautiful and amazing children. The 'stranger than fiction' part? Oh well that's here, there and everywhere. Some of my life has been 'the norm' but I would have to say majority of it has been a wicked rollercoaster ride. The ride I think began in my teens when I suffered from Eating Disorders (ok that's probably more the norm thing these days eeek), and got the shock of my life at 15 when I was diagnosed with Type 1 Diabetes. My mum actually thought that the diabetes saved my life (from the anorexia and bulimia) but I did have relapses over the years. After the Diabetes diagnosis at 15, my whole family got the worse news ever when my mum was diagnosed with Pancreatic Cancer. I was 18, my mum was (ok I won't disclose her age, mum would not be impressed, she liked to keep that one 'mum'). Before I got to graduate from High school my mum passed away. She never got to see me graduate, go to uni, get married, have kids... something a lot of people tend to take for granted. I distinctly remember her saying to me as she was wasting away "The saddest thing is- I will never meet my grandchildren"... that has rung in my ears everyday of my life and has become louder since having my children.
After I graduated from High school I went on to university to study teaching. I partied extremely hard, which 90% of that partying I do regret, but I think that was my way of escaping the pain I felt from the loss of my mum. I suffered great bouts of depression, not knowing what I wanted in life, feeling lost and hopeless. I transferred degrees, then went back again to finish what I started. In that final year of uni I met a much younger man (I was 24, he was 18) and fell head over heels in love. We planned to be together for ever and so I decided to propose to him. Lucky for me, he accepted. Two months later we got a huge surprise... we were expecting a baby (to be born in Sept 2005)!
This was the start of the more major journey we weren't expecting...
The birth was traumatic and had complications. Our first born, Liam started having seizures and apneas after the emergency c-section. Months later we were to discover that the trauma at birth had caused a lifelong disability, severe Spastic Quadraplegic Cerebral Palsy. And so the beginning of an entirely new road... a road only the minority of people will experience.
We thought that our bad luck and traumatising experiences were over. Hmmm not bloody likely.. We wanted a sibling for Liam and fell pregnant in 2007. Half way through the pregnancy my waters broke and I had to give birth to my little boy Dylan, who was too young to survive outside the womb. My heart was broken. What had I done in a past life to get all this bad luck??? Ha! Well that was just the beginning. We became pregnant again in 2008. I was very worried but the pregnancy seemed to go well. Jack made an early appearance at 35 weeks, but he seemed healthy and happy. And we were extremely happy. Until we found out at 4 months old he had a congenital heart defect called Tetralogy of Fallot. The only way to fix it was with Open Heart Surgery. I couldn't believe it! So at 5 months old little Jacky had his OHS.
Now for another surprise... this time a good one lol. We were expecting another baby! Jack was only 9 months and we were in shock to say the least. As I neared the end of the pregnancy we started to worry about Jack's development... So he started Speech therapy at 15 months old.
Evangeline was born September 2010 and she was and is perfect! But I think my two boys are perfect too! Just a different kind of perfect. As Evy was blending well into our family, it became more obvious Jack was the 'black sheep'. Now we are on the journey of Jack being diagnosed with Autism Spectrum Disorder.
I know this is a heap of info to read in a first blog entry. My apologies. But I needed a kind of nutshell thing to keep you up to speed as a blog further. I will hopefully have entries organised in themes etc. So you don't have to pour through each individual entry if there is only one or two things you are interested in reading such as info on Cerebral palsy or Depression or Open heart Surgery or... you get the idea.