Monday, 30 May 2011

Mother Guilt: it disables me...

At the moment I am suffering the hugest bout of Mother Guilt ever. And it's crippling me. I want to do everything for my children, everything they need and I find myself paralysed. I don't know where to begin. I worked so hard with Liam when he was first diagnosed. I burnt myself out in that first year. There was so much to focus on... his mobility (starting with rolling over... still can only just do that now), his muscle length and strength, his eating, his talking/communication, his hand play, his sitting, his drooling. Amongst this I had to make sure everything else was running smoothly including my diabetes.. I decided after a year of Liam crying and screaming through therapy sessions that I needed to be more gentle on Liam and myself. But this has come back to haunt me.. I was having a conversation with a lady about Liam and where he is at. She asked how he was mobility wise and I said he still isn't mobile yet. She responded with "How strange, I mean there's that boy R.... that was only crawling when we first met him and now look at him walking everywhere". I was floored. Was she implying that if I did more therapy with Liam he would be walking by now??? (Besides the fact the 2 boys have totally different diagnoses) I felt sick to the stomach. I panicked and thought yes maybe if I ignored Liam's cries and pushed him every day and forgot about my own life and my own needs, that maybe, just maybe he would be walking today.... Then I realised that this is a futile thought pattern. And also if I had done that we would actually be a miserable family with a child that can walk (or might not walk.. you can never know). Besides my main goal was and still is for Liam to be able to communicate everything thats in his mind. A goal that I think is very realistic and we will focus on for as long as we need to.  Famous singer/songwriter/musician Neil Young also dealt with these struggles with his son Ben who has the same diagnosis as Liam, here is an interview and it's 2nd part I read that comforted me and had me in tears at the same time.
My mother guilt will always be there, it will just peak and trough over time, as most mums feel it and have moments where they question how they have been as a parent to their children, whether they could do better and so on. Yes it's normal, but it's not productive if you end up just sitting there staring into space thinking about it.
Now I have three children, each with their own definate individual needs and some of those needs are conflicting to the other 2. I realise the enormity of my task as being the best mum I can be to my 'three muskateers' and this has me quite anxious and as I said before it renders me paralysed at times. I am thinking maybe I need to let myself be paralysed for a moment and do that crying thing people keep telling is so good for the soul hahahaha. And then I can pick myself up, dust myself off and rock this!!

Sunday, 29 May 2011

The perfect brothers...

I use to worry about any sibling of Liam's missing out on the usual sibling play. Liam is very social but the majority of the 'play' or 'interaction' must be done by the other person. Although Liam also loves to just watch. He is an avid people watcher and that's why he loves going to the shops. Any child playing with Liam may get tired, bored or run off to find more stimulating interaction.
 My worries have slowly been reduced as Jack's personality has emerged. Jack couldn't care less if another child played with him, so the fact that Liam is unable to participate with Jack most of the time doesn't seem to faze him, and Liam is very much entertained by his brother's antics and explorations. Although when Jack has a meltdown Liam has complete empathy for him and even gives me that look of "oh please help him, he's distressed".
Now I think of them as the Perfect Brothers. Jack is happy to go about playing by himself all day, while Liam is happy to watch the entertainment for which his brother provides.
We just have to wait and watch what happens as Evangeline grows and develops. Evy may be the 'steel' to Jack's 'flint' and Liam's 'oxygen'. I certainly can wait for the sparks. *insert knowing wink here*

Friday, 27 May 2011


I am guessing this is ironic...
When I was pregnant with Jack I mentioned to some people that I felt bad Liam would be the one with a disability in the family and that he would have to watch his "normal" sibling grow up and develop before his eyes, without needing Doctor's appointments and therapy appointments. At one of my 3rd trimester ultrasounds it was picked up that Jack had 'positional talipes', so I felt Liam now wasn't the only child in our family who will need some physio therapy and I was strangely happy about this.
At a few weeks old my little Jacky had plaster casts put on his feet. That was what I thought to be the extent of Jack's 'problems'.
At four months old Jack was diagnosed with a 'hole in the heart' by our paediatrician. Once again we were ok with this. Many babies have this and it usually fixes itself. It didn't even register on my worry scale at this point... But we were sent to our local cardiologist just to check what the extent was. At this appointment we were to find out Jack has a Congenital Heart Defect and the only way to 'fix it' was Open Heart Surgery. At this point I thought "yes Jack, you have now proved that Liam isn't the only child with something different in our family and you've surpassed him in giving us a freak out!".
Nowthat Jack has his diagnosis of Autism, I can safely say Liam will not be alone in being the kid who has therapy, doctor's appointments and the rest. Oh but the irony of my earlier worries I spoke of to others is so apparent right now. You have to laugh right? Or you'll cry....

For better or for worse...

The one thing I worry about is the divorce rate and how the chances of divorcing seem to be higher in couples who have children with special needs. This is the one thing that has been playing on my mind these past few days. I know it's strange that I haven't really thought about it much before (even though our eldest is severely disabled) as I feel my marriage is strong and solid as a rock. But since we now have two children with additional needs and extra challenges I do feel anxious that this could be the thing that breaks a solid marriage.
We all enter into marriage with the notion that it is forever and that you will go through everything together. No matter what happens you will support one another and care for one another... But unfortunately for a large percentage of couples that doesn't last. Why is that? Is it because we change and can't change at the same rate on the same path? Or is it because we try at first then start to slip and then just let go altogether? I guess in every individual case there is a different answer.
I am not saying my Knight in Shining Armour and I are having marriage problems. We are as in love and as supportive of eachother as the day we met. What I am saying is that so were a lot of couples in their relationships, but later on something changes. I want to make sure that change doesn't happen to us. Yet I am sure those couples who are divorced now didn't want to change either... it just happened....
My theory is we have to 'keep on top of things' (and no that wasn't a double entendre.. this time). Communicate on a very regular basis on what we're thinking, feeling, on what we would like and what we want to avoid. We need to be a team, as well as give eachother space to be our individual selves. We need to see the hard times as a way of becoming closer, rather than a wedge to drive us apart. We need to be more than just our kids and most importantly every couple needs to have FUN (as a couple)! This week humour hasn't been so hot in our house. And of course there is a time and a place for it, so I guess this week wasn't the right time. We need to remind ourselves that not everything in life needs to be 100% serious. I think I will wake the hubby up in the morning wearing a funny outfit or doing something a little bizarre to make him laugh.
Relationships are made up of complex dynamics. I guess there are no hard and fast rules unfortunately, due to it being part of the human condition. Oh how humans are puzzling creatures.

Thursday, 26 May 2011

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.

Wednesday, 25 May 2011

Fanfare and fireworks...

Ok so I don't know what I expected at that moment when our paed said Jack has Autism. Was I expecting fireworks? Trumpets? Some dudes to jump out of the side door yelling "surpriiiiise!". Nope, it was so fricking unceremonious. As are all these defining moments in our lives... In fact Liam's diagnosis was given to us in that exact same room, with no fanfare, no fireworks and no "surpriiiiiise!". Although I remember the Doctor handing me tissues. There was no tissues today. Strangely I was laughing, Byron was wrangling the kids, Doctor was shaking his head with a smile.
In fact I was officially diagnosed with Type 1 Diabetes in that same room too, by the same doctor. Although my memory of that room on that day was darker. How funny. Not so dark today. In fact today was exciting because Jack started 'roaring' like a dinosaur and I felt and still feel quite proud about that. He picked up a dinosaur toy and roared. Makes me smile. May not be much for some people, but damn he might as well won the Noble prize according to me.
I have been told that after diagnosis your child is still that same child. Nothing has changed, other than access to more services to help. But there is a change. A change that only those who have gone through this can understand. I am not saying it's a negative change, but things will never be the same and that is a fact. These things can not be undone.
Please don't get me wrong. This is not doom and gloom, but it is something that changes your life and shapes your being. I am speaking for all who have a child with 'DIFFABILITY' . And in my case, more than one child with 'Diffability'. The crazy thing is, I'm not the only one with more than one child with 'diffability'. I have several friends who are in a similar boat. And these people are probably the last to whinge and complain. God bless them.
Thanks for reading these posts tonight. You are now on this new journey with me *cue evil laugh* , now you must come along and enjoy the ride....

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..

Tuesday, 24 May 2011

When it's said. When it's in black and white...

Today didn't turn out the way I thought it would. I like to be in control and I don't get to be very often. So when my plan was to head to my children's paediatrician and tell him that I am pretty sure Jack has Autism Spectrum Disorder, just to make sure we were on the same page of where we think Jack is at, I was thrown for a loop. Our paed turned to me and said "so what therapy funding are you getting?"... I say "well we need a diagnosis of autism to get that funding".. his response "he has the diagnosis, he has Autism". Yes people, defining moment. This is not the day I was meant to hear that. I was somewhat prepared to hear it in 2 months time when he has his assessment at the hospital. But today? Like this? It was a strange relief, but it was also a shock. Now I probably have you confused. I have me confused. I am relieved, yet there is the grieving that I thought I dealt with months ago.
I guess I won't forget this day. The day after my mum's 13th anniversary of passing, I get told in black and white, on paper and from the Doctor's lips, that my son has AUTISM. Yes, yes, I know I've discussed it before like it was just a matter of fact, but now it's not a possbility or a probability, it's a definite. I don't know whether to laugh or cry. I said to our paed "you have to laugh hey or you'll just cry". He said he couldn't believe that all this could happen to us. And so he wants to investigate the genetic side of things. Thus we are on the trail for genetic testing as well.
This post will be a bit discombobulated as I am feeling discombobulated.
I think my husband is being more affected by it. It's like he's lost that spark  at the moment. He's still making those corny jokes, but there's this look in his eyes, I can't quite explain.
I think I'm best to go for a walk now. Liam and I love our walks together. I NEED it now.
Will blog a bit more later. As I said,  I'm just discombobulated. Man I love that word. Try and use it in a sentence today people :-)

These WERE a few of my favourite things..

I thought I would dedicate tonight's post to some of the things I loved about my mum and the era when she was alive. I had my tears last night, and today I had a wonderful time enjoying my children as my mum would've wanted me to. And so to end a lovely day I thought I would think of all those things that make me smile when I think back to my time with my mum...
  • she loved watching me be a 'drama queen' and a 'disco diva'. I can still see that proud look she would give me as I pranced around thinking I was a superstar. She believed in me and my dreams.
  • her hugs were the bomb diggity, in other words they were the best things ever and nobody hugged me like my mum did. I loved snuggling into her neck and feeling so safe.
  • she had a wicked laugh! And now I realise I've definately inherited it. Got to love those dirty, wicked laughs.
  • I thought it was awesome that she could never give 'the finger' properly, she'd always muddle it up, wanting to give 'the forks', then it'd just end up being the pinkie, which in this day and age can be an insult too. So she was way ahead of her time.
  • She was a Masterchef. I always looked forward to dinner time and she never disappointed.
  • she listened to everything I had to say and took a real interest, not feigned.
  • Her passion for sewing was incredible. She made everything in our wardrobe and I mean EVERYTHING! Underpants included and once she showed off her handy work whilst I was wearing them, yes indeed she lifted up my skirt and showed some friends how well she made undies. I was mortified at the time, but now I get the best memory giggle from that incident.
  • She was uber protective of me. I swear if she could've gone upto someone who had upset me, deck them and get away with it she probably would have. 
  • Christmas day she would make us wait until about 10am before we could open our presents. I thought it was sucky at 6am, but by the time we were opening the present it made it so much more sweeter to still be opening them when most kids were over the whole thing. I especially appreciate it now and will do the same to my kids. 
  •  My mum loved watching "The Bill" and so we all sat down to watch this Brit police show on a saturday night whilst inhaling a block of Dairy Milk Chocolate or Caramello. actually she made us watch all the 'pommy' shows that were on TV. I guess she missed her homeland sometimes...
  • Every night without fail we would say to eachother "Have a wonderful dream, and a wonderful sleep, I love you and I'll see you in the morning"... we made sure that was on her gravestone.
Well those are just a small number of the things I cherished about my mum.
I love that instead of dwelling on the pain, the loss and the sadness; it is much rewarding to think about all the beautiful things surrounding her memory. Instead of thinking of what I don't have, I can consider myself lucky for what I got to experience with my mum as I was growing up.

From Alfred Lord Tennyson's poem In Memoriam:27, 1850:
I hold it true, whate'er befall;
I feel it, when I sorrow most;
'Tis better to have loved and lost
Than never to have loved at all.

Monday, 23 May 2011

.. Dear Diary.. part 2..

Ok people I'm back from my shower. Continuing on..

Sunday 15th March 1998:
Mum's become jaundice & bony thin. She is in absolute agony and throwing up. I can't take it, it hurts me so bad to see her this way. My stomach churns and my heart aches. Lying in bed last night trying to go to sleep I heard "Tears in Heaven" & cried myself to sleep. When i woke up Tam came in the room & gave me a hug & we cried together. Dad hadn't slept last night (maybe only got an hours sleep), he'd been crying and pacing.
I had many bad dreams, one with me hugging & kissing mum as she was in pain and dying, she oozed a desperate urgency to stay with me & I with her. We couldn't let go & there was a knowledge there that she was soon to 'leave'. It's freaking me out, I can't take it. We all feel so helpless. I want to hug her right now but she is so fragile, thin & ill, I can't hug her. I told her that & she understood so I kissed her arm. I've been kissing her cheek a lot. And all I can say is how much I love her & she says "I know, I love you too".
Last night Tam, C... & I went to see "As Good As It Gets". It was a good film, but I cried a few times when thinking about mum especially when I thought how much she'd love to see that movie.
Mum is unable to keep down the little amount of food that she does eat.
This is all so scary, I'm scared. I'm chilled to the bone..
15th continued
Dad called Aunty Josephine, & I sat with him as he told her what's happening. I can't write it all but I cried soooo much & hyperventilated. I'm a mess. I've got to go to bed now.

Monday 16th March 1998:
All mum can do is drift in and out of sleep. She's light headed & can't seem to concentrate. Dr M.... came by this evening & told mum she has to go to hospital tomorrow to have an operation on her bile ducts through her mouth/throat etc down to her pancreas. It will unblock the bile ducts and stop the jaundice and nausea. She'll be in there till thursday (Tam's b'day is on wednesday).

Monday 23rd March 1998:
Mum went into hospital on saturday for today's operation on the bile ducts. we visited her tonight in ICU, she was all tubed up etc. It's sooo sad. I held her hand & we spoke to her. I love her so much and told her so. She's the best mum in the world. it aches my heart, I don't like seeing mum in pain.

Sunday 19th April 1998:
I talked with mum this arvo while she lay in bed. I told her I love her heaps and she said "I love you with all my heart"- it was beautiful. I don't want her to go but it is slowly happening. I can't take it. Soon she'll be unable to shower herself, go to the loo, maybe even feed herself. I don't want her to get like that. Sometimes I get soooo angry & sometimes I get sooo sad. It's unbelievable. Mum doesn't know what to eat & can't eat much. She's just skin and bone. I can't take it. She's so precious. Why? Why? What bastard is responsible, I could just torture them! Urrggggggghhhh!

Wednesday 22nd April 1998:
Every night without fail I have dreams about mum, death etc.. I guess they're more like nightmares. Mum always looks healthy in my dreams but the knowledge is still there that she is dying. It doesn't feel real.
Yesterday mum said "I'm scared". Oh God it gives me butterflies, nervous, scary.
I looked up on the 'net for life after death. Elizabeth Kubler Ross says without a shadow of a doubt there is life after death. She works with terminally ill patients & has spoken to 100's of people who have had a near death experience.
I hope with al my heart & soul that there is life after death. i want mum to be safe.

I have read a few entries to myself and decided I will keep those private. But this final one, this very important entry I will share. Tears are streaming down my face, my heart aches.

Sunday 24th May 1998:
How do I begin.. it has happened. Oh my God it has happened. Mum's spirit left her at 2.10pm. I crying. she's in heaven now. She is watching me write this. Tam & I were holding her hand as mum's eyes lost that spark, her sprirt was leaving. since early this morning we were by her side telling her how much we love and appreciate her and that she is safe. friday night we all slept in the living room in front of the tv. Last night mum slept in her own bed.
This whole thing feels strange. I've never seen a dead person before, but I'm not afraid, as her spirit in soaring in heaven- I Know It!!!! Oh my heart aches.
My heart raced when I saw her leave. i can't write anymore at the moment.

Reliving that was very hard. I think that will be the last time I will read that. 

Tomorrow, the anniversary of her passing I will celebrate her life. I will think about all the wonderful and amazing things that made up my mum. I will remember all the fantastic times I had with her. I can bawl my eyes out tonight and tomorrow i hope to wake with all the loving memories of my beautiful precious angel mum.
Thank you again for taking the time to read my posts tonight. Now go and hug your loved ones xxx

..Dear Diary...

I decided that today I would share a few extracts from one of my diaries. But there is a reason for my choice in which diary and what dates. You see tomorrow is the 24th of May, and it will mark the 13th anniversary of my mum's passing. So I have chosen the diary from when I was in my late teens. I haven't opened it for awhile and it will probably be quite confronting for me and possibly for others. But I think it may help deal with all those emotions and thoughts that come up at this time every year.
So here we go...
Saturday 21st February 1998:
Mum got her results from the tests she had on Thurs, it said the liver & kidneys were fine but the pancreas has an enlargement at the head & points to carcinoma. We freaked & called Dr T..., so mum & Tam drove to C....... at 6pm to get Dr T... to explain the results.
I called dad who had met up with them in C..... He wouldn't tell me anything on the phone, so when Tam called (came home seperately) I asked her to tell me what's going on. Dr T... said we have to treat/view it as cancer of the pancreas at the moment & hopefully prove it wrong. Mum's going for some more tests on Monday- CT scan and chest X-ray. I was fully shocked.
When Ma and Pa {this is what I called my parents sometimes) & Tam came home I found out if it is Cancer of the Pancreas & it hasn't spread yet they have to take out the pancreas & mum will be on enzymes for the rest of her life or if it has spread (namely to her lungs) she will die. I can't believe it! I feel sooo bad for mum, poor thing is sooooo afraid and upset. I love her sooooo much and would lose my mind if she dies.

Well that was hard to type. I'm shaking a little. I totally forgot about that. I didn't know that was the exact date she got her diagnosis.

Monday 23rd February 1998:
Mum went for the CT scan today & the result was that she has Cancer of the Pancreas, but it hasn't spread to any other organs. So they have to remove the pancreas & give chemo to mum. I guess it's better than her dying but I'd be shitting bricks if I had to have an organ removed. I love her soooooo much. I hope she's not too scared and that everything goes well.

Once again I totally forgot about this. The hope.

Sunday 8th March 1998:
We've been visiting mum everyday, she thinks this is the end. i try & tell her it isn't. Mum is on morphine (but it doesn't entirely work). On Fri I stayed the whole day with mum, except she had a special test at 2pm (which went for 3 hours). She had to be taken to the Nuclear Medicine section & injected with a special dye, so i couldn't stay with her. So I walked to westfields & spoke to Mrs M... on the mobile phone.
Yesterday Dad, Tam, C.. & I went to C.... to do shopping & buy mum a few nighties. Mrs M... gave us a dinner to keep in the fridge till we need it, she also gave a present to mum > a tiny teddy bear named 'Precious'. I gave Mrs M... a hug & thanked her for her help.
People have said they've been praying for her,I have prayed also but feel praying will do no good.
On Monday we'll find out what's happening with mum.
There's a girl in the ward named Janelle who's 16 years old and has Acute Leukemia (a fast occuring thing, pretty fatal). she was crying on monday night & has had a lot of visitors (high school friends and teachers). It is sooooo sad. It's such a depressing ward > ill people, vomit noises etc etc. Janelle had pretty below the shoulder length hair when I first saw her on monday but yesterday I saw her with a short boys hair cut looking much more ill.
Mum's looking soooo skinny/bony, like she's fading away. Tam is breaking & so is dad. I reckon I'm just in shock, acting strange and having weird dreams, yesterdays dream had the theme of death (with a written description of what happens in the last few mins of dying).

Tuesday 10th March 1998:
Yesterday evening Tam & I drove to L... Hospital. Mum told us how the P.E.T scan went. There are some 'warm spots' in the liver & near the collar bone, doesn't look hopeful & mum has to have another ultrasound. We (Ma, Pa, Tam & I) went outside, I hugged mum as we both became tearful. Mum's shaking in fear. it hurts to see her like this. I don't think it's fully hit me yet.
Tam & I had a little catfight over nothing cos we're both vented up with anger. but both apologised.
This is like some awful nightmare.

Night mare indeed. It is painful to read and I just want to go back and do something more helpful for my mum. I feel I should've hugged her more at that time. I shouldn't have left her side, ever.

Wednesday 11th March 1998:
Found out that they can't operate, the cancer is in another place as well. Mum's starting chemo tonight. There's a 1 in 5 chance of it working & mum living.  It's so shocking, I can't believe it! she was meant to live until over 70, see me grow into a woman, get a job, get married & have kids. Argggggh. I cried for 10 minutes straight just thinking about it all. This fucking sux! There's like a death sentence on her. She's the best mum in the world. I love her soooo much!

Thursday 12th March 1998:
I just finished watching 'Oprah' & it was about keeping a gratitude journal, how it helps you appreciate the day, fulfills your life, makes you positive, instead of focussing on the bad. I will try to do the same here, focus on the things I'm grateful for but also what happens in the day or week (neg or pos). Oprah used to keep a diary from 15 years old onwards, but it was filled with negative things, but for about 2 years now she has kept a gratitude journal which contains 5 things you are grateful for in the day. So here goes...
1. I got to be educated today, went to school
2. I really enjoyed breakfast
3. I actually enjoyed cleaning the house, purifying experience
4. Mum came home, i'm glad to have her
5. Thanks for microwaves. i made dinner of deb potato & peas

Ok so I need a break for a bit. I will post this and go have a shower. Thank you for reading this far. It is a journey so inexplicable, but I hope to have helped someone, even if it's myself, in sharing this.

Sunday, 22 May 2011

a poet.. and you didn't know it..

Ok so maybe some of you knew I am a bit of a poet, but I am sure there are quite a few that don't. Although I must admit I haven't written much poetry of late, well not much in the last 7 years, I guess I've been busy being 'loved up' with my hubby and kids *cue corny "aaaah" sound from audience*. I started writing poetry when I was in primary school and was an avid writer of poetry for all my school years and into my uni era. I have kept a large majority of these poems and once in a blue moon I pull a few out to read, sometimes I get a giggle out of them, sometimes a tear from memories brought to the forefront. Anyway I thought I'd open up my heart a bit more to you all with some sharing of intimate pieces of prose. Maybe it will inspire some of you to start writing your own poetry, or reignite the passion in those who haven't written prose in a very long time, and others may want to share the musings and rhyme they create on a regular basis (but family and friends may not know this about them).
So here is a few poems (some attached with when they were written) for your Sunday evening  read...

19th June 2001:
For this moment I no longer see,
your eyes, your reflections of truth,
of affection, of comfort and warmth.
Feeling alone and empty,
I hold my breath, feel my heart
begin to ache, to swell up
in my tiny chest and a
pregant tear rolls gently over
and down my cheek.
The movement of my blood
through my veins becomes
apparent, I feel so very
alive and dead at the same
Filling with all the emotions
a human will experience in a lifetime,
I can barely take it,
I struggle for my next breath,
my lungs strain to contain the air.
Will I breathe properly again?
Surely I will, you tell me I will....

7th August 2001:
untitled #2
The sky was blue this day,
or so those around me said,
but clouds were everywhere
darkened almost charcoal blur.
Can't see far, if there is,
if there's a distance.
Only my last steps remain
the footsteps of pain.
Draining colour, draining zest,
there is nothing, no peace, no rest.
Death, no not near,
pure torture eternal,
no possible change in the weather,
whether I will live through the rain
and see the sun again.

Ok so those were pretty depressing hahaha. I was a bit emo right? It's funny that I experienced much less traumatic things back then, but I was a 'tortured soul' and now that I have had the life experiences which I have outlined to you in previous posts I am less inclined to feel so 'tortured' and angry... maybe it's an age thing? Maybe it's how you grow and develop after dealing with so many intense experiences...

and the last poem entry for tonight that I will share is one I wrote over 2 years ago, that some of you may have already read. I'm thinking of adding another verse about the journeys with Jack. By no means does this poem say "I am amazing" and I don't put myself on a pedestal. It is simply saying that we are all strong and we just have to find that strength in those times when we most need it.

2nd June 2009:
The Strongest Person I Know
The strongest person I know,
well she comes and goes.
She could be here on a sunday in May,
kneeling beside her mummy,
grasping her frail hand tight,
in a calm voice, reassuring
her mum that she will be safe,
that she will be free of pain,
and that we love her dearly.
The strongest person I know,
was able to witness the last breath
of her protector, her bestest friend ever,
and accept the spirit slipping,
slipping before her eyes.

The strongest person I know,
came back one summer night,
when she knew the life she carried
was not able to keep up the fight.
Standing in the labour ward,
hearing the cry of healthy newborns,
knowing she'd never hear her own that night.
Embracing her husband,
asking for a positive experience.
I now can't comprehend how she did it.
Why was she not hysterical at the time?
All she could say afterward was:
"I'm sorry bub, I'm so sorry"
as she held her angel baby tight.

The strongest person I know,
well she comes and she goes.
The person who sees her the most
is my beautiful, amazing son Liam,
the most observant little man,
so perceptive as he peers over his glasses,
giving me that knowing look,
saying with his eyes:
"you can do this mum, you've done it before"
and thats when I can hold my head up high
as we head out the door...

Well there you have it.. a bit of my soul layed bare for you all to see. It's quite scary to be so vulnerable but exhilirating and liberating at the same time. I was thinking I may even blog later about my 'Dear Diary' era (from age 13 to 25). I am so glad I kept all these writings, it is just as good, if not better, than photographs and video. It's a snapshot of your soul. For all those who have or had kept a diary or journal I urge you to have a read through this evening and see how you've grown in so many ways.

Friday, 20 May 2011

Lucky duck...

When I tell people about my children obviously it comes out that Liam has CP. It's just a fact of our life and that's that. But I have had the response of  "oh I'm so sorry" or worse still "you poor thing". What? Huh? Excuse me? Do not feel sorry for me or Liam. He is one very happy dude. And I like to think I am one pretty happy dude-ette. Further more I am one very lucky mummy!!! I am so blessed to be able to have children. There are people out there who will never be able to concieve and they would pay thousands, if not millions just to be able to be given a possible chance of falling pregnant.
Yes indeed there are difficult days and yes my back aches at times, but I would never trade that for anything! All I have to think about is how we almost lost him in that first day of life and I know I have won the lottery with Liam. He is one in a gazillion. As are all our children.
I remember having a conversation with a person, who had no problems concieving, about fertility treatment. She had said that it was against God's plans and that the Doctors were trying to play God. I was quite gobsmacked. I then asked if that also included fertility drugs, not just IVF, and she responded with "yes, any kind of intervention is against the plan". I kindly pointed out that my parents had tried for 7 years and that without fertility drugs my sister would not be here and maybe I wouldn't be either (although I was a little surprise for my parents lol). She was unable to speak after that. What could she say?
The pain and the sadness of trying for years and years I cannot even begin to imagine. Liam was a surprise baby just like me, but we tried for 2 months with Dylan and that felt like a long time! Then after we lost him I could not go on until we were pregnant again. It took 6 months for us to fall with Jack. That six months was torture. Maybe more so because I was trying to fill the void that had opened up from the loss of Dylan. So the thought of trying for years and going through numerous treatments and dealing with the rollercoaster of emotions, is just beyond comprehension. And there are couples out there experiencing this everyday.
I do love the good news stories of people getting their miracle babies. Some through fertility drugs, some through IVF. And in some cases naturally, against all odds, when a couple have been told they will never concieve. Now that is magic!
Next time someone says "oh I'm sorry", I'm going to take advice from my friend K and respond with "what? did you fart?"

Everyone has a story to tell.. EVERYONE

As the title states, I believe everyone has a story to tell. Each and everyone of us have lived an interesting life, an individual life, one that is noteworthy. Most people don't realise this and have mentioned to me that they don't think they have the 'material' for a blog. And some people have told me they have the material but don't think they like the idea of people reading it (and that's fair enough).
I fondly remember a show on SBS (and no, it wasn't a Spanish film with subtitles and nudity) called "Front Up". I would sit down and watch it every Thursday night with my mum, dad and sister. It had a very basic set up, 'reporter'/'host' Andrew Urban would approach random people on the street and just strike up a conversation. Urban had that certain something that had people just "spill their guts", they would reveal interesting details about their life and we would sit in awe of such amazing and inspiring tales. I guess it was like a moving blog. I miss it and wish it were back on air.
When you talk to anyone and take that time to listen you will find out some very amazing or at least interesting things about them and things connected to them. And this is most true of when an elderly person starts a conversation with you, pehaps in a queue at the shops or at the RSL. They have a long rich tapestry to share, spanning decades and major events So try not to dismiss the old lady that starts 'rambling on' to you, you never know what information you may come across. Although you can also find stories being told from children who have experienced more than most adults, in their short life time.
The point of this blog post is to say we all have something to share with the world in terms of our experience and how it has shaped us. Don't be afraid to share as not only is it cathartic, but it might also help the person/or people you are sharing it with.
Blog on!

Thursday, 19 May 2011

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!!

Rainbows, lollipops and sunshine...

I realised that maybe a part of my 'foggy in the head' issue at the moment was/is to do with my brain in major overload. Not only have I been thinking about all the day to day things and the planning of things, I have also been doing some major reflecting of late a la this blog. Therefore I have been doubling my minds 'work load' so to speak. And the majority of my mind has been focussing on some very serious issues. I was discussing with a friend today (we shall call her K) about this and she pointed out how blogging could be cathartic and help, and I agreed, saying that was my initial reason for starting the blog, to help both me and others. We agreed on the fact that in any form of therapy things have to get worse before they get better. So there is no way I'm giving up this blog at this point ( you can wipe your brows and sigh with relief everyone hahaha).
I've decided to 'lighten' the 'workload' and try to think of all the positive and good things for the next few blog posts. Hence the Rainbows, lollipops and sunshine!

Wednesday, 18 May 2011

Bloggers world...

I am new to this whole blogging thing. I guess that's a bit obvious.. you know, the lack of 'pages' and no 'buttons' and other fandangled digital fanfare. So please bear with me as I feel my way through this blogosphere.
I must admit I've read some very awesome blogs lately. And I think that has me finding my blog very bland in both design and set up. So I will hopefully become a bit more brave as I go along and add new 'badges' and other features to keep up with the award winnning blogs out there.
These two blogs RRSAHM and "Enjoying The Small Things"  are what I aspire to!
Seriously there is a Bloggers World!! I feel so alien to it at the moment and have a lot to learn, but it's certainly taking my mind away from other things...

Foggy in the head...

When I have bouts of depression I get, what I call "foggy in the head". I can't think straight, I get easily confused, my memory suffers and I become forgetful. I also become worried about 'nothing in particular'. I get panicky and anxious. And for the life of me I do not know why!
The funny thing is I am actually happy at the same time... Happy that I have a loving and supportive husband, three amazing children and we have a roof over our heads. I am filled with gratitude for all the positive and wonderful things in my life. Yet I can still have times where I just feel 'hopeless' and fearful, and I can't put my finger on what it is I'm scared about. I certainly don't want to die, but there are times where living is just so tiring and the thought of sleeping for a few months or years sounds kinda nice. Not having to think or feel for a little while, now that would be a little slice of heaven.
People may argue that the things I have experienced in my life would certainly be the cause of these feelings,  but I really doubt that. I had the "foggy in the head" times when I was a teenager too. Before my mum passed away. Before my diabetes was diagnosed. So it is not something entirely connected to my situation and experiences. Although certain events have not helped me in that aspect. I even had to go on Anti-Depressants after Jack's Open Heart Surgery. I dealt with Jack's heart defect diagnosis quite well, and the surgery I was terrified but I got through it. What got me was about a month later I just started thinking "what next?" What else will one of us get? Or be diagnosed with? I became paranoid about every ache, pain, discomfort. I was afraid I had breast cancer and I would check everyday. I checked every mole on my body worrying about melanoma. I was a wreck and I thought that I was meant to be tip top because Jack's heart was fixed!. I decided I couldn't function like that and went on the meds. What got me off the meds was that I became pregnant with Evangeline.
I have nothing against anti-depressants and I'm all for taking them if they're your only hope. But I really don't want to take them myself and I have been able to deal with depression through healthy eating, exercise and positive thinking.  But at the moment I am doing the healthy eating and exercising and even positive thinking, yet I am coming over with that bloody "foggy in the head" feeling, that heavy heart, that "I want to sleep for a year". Maybe it's just a little glitch in my mind right now and next week I will be ok.
The one thing that I hope my children never inherit from me is Depression. I say inherit because I do believe it is genetic. My mum suffered from it and her dad suffered from it. Yet I fear this hope is futile as the amount of people I know who suffer or who have suffered from depression is quite large, and is always on the rise. Why is this???

Tuesday, 17 May 2011

Ok balancing out tonight's other post with something light hearted..

I love ice cream! I am an ice cream fiend! I would eat ice cream in an igloo in minus temps if I could. You know when people ask you that hypothetical question of  "If you were on death row and you were just about to get executed, what would be your last meal?" Well I would just go straight to dessert. I wouldn't even need a fancy schmancy designer ice cream, doesn't need to be Homer Hudson or Baskin Robbins, I would settle for Chocolate Fudge Sundae from McDonalds (aka Maccas for the Aussies)... but it'd have to be the large one and not just one, probably five of them.  In fact I remember as a little girl asking my mum if you could die from eating ice cream, say if you ate too much in one sitting or if your heart could freeze and she responded with an unsure "maybe", and then I announced I wanted to have death by ice cream when it's my 'time'. Bizarre I know, but I was and still am bizarre.
So what would YOU have as your last meal??

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.

Sunday, 15 May 2011


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.

Lessons learnt...

Today I was having coffee with two of my good friends 'L' and 'N' (I haven't asked them if they would like to be mentioned or kept anonymous yet, so I'll just refer to them as such). We were discussing the "everything happens for a reason" thing and that everything is/was meant to be. I know when you are going through a traumatic experience that's usually the last thing you want to hear "oh it's meant to be" or "God has a plan and this is part of it". But in hindsight I think it rings true. Especially if you think of all the wonderful, amazing and positive things in your life... if the bad stuff didn't happen, neither would all that positive great stuff.
The real tragedy that comes from tragedy is not learning from that tragedy.
Ok I'm going to keep this post short and sweet tonight. (I may just continue this line of thought in my next post. But who knows, I'm a scatter brain at the best of times hehe)

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!!

Saturday, 14 May 2011


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...

Friday, 13 May 2011

Darn it! I wanted to post on my blog last night...

...but the blogger site was down grrrr. Just when I would've wrote my masterpiece. Oh well the moment's gone now, so we'll never know... hehehe
Anyways, back to that train of thought I was following last post. L, N and myself were reflecting on a few events of the past and how we learn from them in terms of gratitude. This is especially true of events where 'loss' occurs. I certainly will never take my three muskateers for granted that's for sure!!! I guess losing a baby may not seem like much to those who haven't experienced it. But there isn't a day that goes by I don't think of Dylan and what he means to my life. His loss means Jack and Evangeline could be here with us. I have certainly grown as a person through that loss and that change cannot be undone. I also see that my mum finally got to have her grandchild. I can imagine her looking after him in 'the afterlife'... that is comforting.
Unfortunately I do see people experience this kind of loss and they become exteremely bitter and angry people, or is it that they always were and never changed?  These people whinge about the most trivial things and that to me signifies no growth, no development, they havent learnt at all from the experience they were given.  I must add it is ok to be angry and bitter for a little while after the event, that is so understandable. But to spend the rest of your life angry is a wasted life.

Wednesday, 11 May 2011

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.