Like the title states.. NOTHING IS GUARANTEED.
And by this I mean, that moment when you are told your child has a disability or there is something 'different' about them either medically or something else, as a parent you start to see the future fall away into something different to what you had mapped out in your mind. All your plans have disintegrated into something unrecognisable. Your predictions of this and that are blown away.....
Well let me tell you! There is no guarantee that any human is going to fulfill those 'dreams', 'goals' and predictions.
In fact all those children who have been deemed 'normal' or 'mainstream' do not come with the guarantee they will not turn out to be killers or rapists.
I could lament the fact Liam may never have children, but even if he didn't have Cerebral Palsy, he may never have wanted to have children anyway!
And Evangeline, well she may end up being the child that never leaves home, that depends on me for everything, while my boys might find some form of independence.
The only thing that is guaranteed is this very second.
This very moment that is happening.
Our children are being nothing but themselves right now.
They may change.
They most likely will change.
So will we.
Over time we all change to some extent.
Nothing is permanent.
We are not guaranteed tomorrow.
That is why we should enjoy as much as we possibly can, the moment that we are in.
Find some sort of beauty in it.
I really think that is the answer to life.
Find the beauty, the magic, the positives in the "right now"!!!!
Because it could all be gone in a split second.
Sorry for the, ahem, slight morbidity. But really, we all need a shake up. We need to wake up to the fact this could be the best time of our lives and we are missing it!
It is all about perspective. And right now my perspective is a little ranty. I am sorry for that. I don't like to be ranty. But I couldn't help myself this evening.
I really wish I could do this post more justice, but I'm too fired up.
This is a blog about my life, which I think so far has proved to be stranger than fiction. Some blog entries may be in 'real time' as in happening in the present. Others may be reflective.. looking back at events and things that have happened to me in the past. I may also include information that is helpful to those who have/are experiencing the same thing/s.
Wednesday, 7 December 2011
Saturday, 3 December 2011
DIFFABILITY :-)
This is a post that will be so close to my heart, it may be almost difficult to type.
I saw that the beautiful Carly from the blog Tune into Radio Carly was doing a blog hop with the theme of what International Day of People with a Disability means to us and I thought how could I not take part???
So here I am.
About to share the wisdom that is being a parent of two children with different disabilities.
What it all means to me.
I have learnt never to think 'never'. Anything is possible. Not just with my boys but in anything I undertake. I see this in a lot of people who have a disability... hang on can I just change that word to my favourite term 'diffability'. We are all differently abled, every single one of us! All of us have strengths and weaknesses.
So back to the last few days (I'm sorry for the discombobulated post lol)... I spent an afternoon the other day with Liam, my eldest, playing with flash cards. It is rare that I can have real one on one time with him, so I grabbed the opportunity as soon as it was available. I often wonder how much Liam understands and knows... he is non verbal and is only able to gesture by waving his arms up and using facial expressions. I can see he has a spark in his eyes and he laughs at all the right times if you know what I mean. But to really know to what extent he understands... well I have no idea. But that afternoon, I asked him to look at the flash card that I had said whilst holding up two different ones. For example: I held up a card of a frog in my left hand and a card of a moon in the other and asked him to look at the frog and wave his arms when he was sure that was the right one. He got it right everytime with such a large variety of cards. That moment I knew he had more than just a spark in his eyes, it was fireworks! And believe me I felt like fireworks were going off!!!
And tonight. Well tonight I witnessed more miracles. And of course it is when I least expect it!
I was giving Jack, my middle boy with Autism, a bath. We have been working on eye contact and speech for the whole year and have been making great progress, but tonight... it was like the Autism left the building. I saw Jack. Just Jack. I was singing a dinosaur song to him and he stomped along, smiling and never once taking his eyes off me. Each time the song finished I did a huge hooplah hooray and clap and then I asked for a high five (which he hasn't done since he was 6 months old.. he is now 2 and a half). And for the first time ever he gave me the most energetic high five with so much gusto, I was almost pushed over. He was ever so present and I would never have felt so grateful of that if I hadn't been through everything else with my boys. The simple act of a high five was catapulted into the realm of pure awesomeness.
I felt overwhelmed with immense joy, but did not realise the magic hadn't finished yet! As I went for the 5th high five, Jack seemed to have fallen back into that state of the world he lives in parallel to us. The one where he doesn't look into your eyes and doesn't respond to a request for a high five... then he started to sing.. "Iiiiiiiiiiiiiiii loooooooooooooooooooove youuuuuuuuuuuuuuuuuu" and pointed to me!!! This is a child who doesn't understand pointing and is just only kind of getting it at the moment. Well I hit the highest note emotionally at that point. A euphoria I can only try to explain. Imagine thinking you will never ever hear your child say "I love you". He has only just started to sing it after copying a television program's song. But this time, he sung it to you. Pointed to you. I don't care who you are, this tops the all time faves of anything in the frigging world list!!!
So to me International Day of People withDisability Diffability means miracles, gratitude, magic, love, achievements, hope, surprises... but I will admit it is filled with uphill battles, difficulty and struggle.. but isn't that life in general???
And lastly, I am taking a stab in the dark here, but if my boys could tell you what it means to them... I think they would say it means that nobody has given up on them, everyone has believed in them 100%, they have been given so much love, support and opportunities, and most of all respect!!!
I saw that the beautiful Carly from the blog Tune into Radio Carly was doing a blog hop with the theme of what International Day of People with a Disability means to us and I thought how could I not take part???
So here I am.
About to share the wisdom that is being a parent of two children with different disabilities.
What it all means to me.
- The first thing it means, is that each and everyone of us is blessed, no matter what. We just have to see it. It is indeed all about perspective and all about making the most of what we are given in this life.
- The second thing it means to me is, I am and will always be forever learning, developing, growing and all because two little boys are doing most of the teaching. I have seriously not learnt as much in my entire life as I have in the last 6 years.
- The third and most important thing is I will never, ever take anything for granted, EVER. People who have not been touched by having a disability or knowing and loving a person with a disability, seem to be less likely to appreciate even the smallest things in their lives.
I have learnt never to think 'never'. Anything is possible. Not just with my boys but in anything I undertake. I see this in a lot of people who have a disability... hang on can I just change that word to my favourite term 'diffability'. We are all differently abled, every single one of us! All of us have strengths and weaknesses.
So back to the last few days (I'm sorry for the discombobulated post lol)... I spent an afternoon the other day with Liam, my eldest, playing with flash cards. It is rare that I can have real one on one time with him, so I grabbed the opportunity as soon as it was available. I often wonder how much Liam understands and knows... he is non verbal and is only able to gesture by waving his arms up and using facial expressions. I can see he has a spark in his eyes and he laughs at all the right times if you know what I mean. But to really know to what extent he understands... well I have no idea. But that afternoon, I asked him to look at the flash card that I had said whilst holding up two different ones. For example: I held up a card of a frog in my left hand and a card of a moon in the other and asked him to look at the frog and wave his arms when he was sure that was the right one. He got it right everytime with such a large variety of cards. That moment I knew he had more than just a spark in his eyes, it was fireworks! And believe me I felt like fireworks were going off!!!
And tonight. Well tonight I witnessed more miracles. And of course it is when I least expect it!
I was giving Jack, my middle boy with Autism, a bath. We have been working on eye contact and speech for the whole year and have been making great progress, but tonight... it was like the Autism left the building. I saw Jack. Just Jack. I was singing a dinosaur song to him and he stomped along, smiling and never once taking his eyes off me. Each time the song finished I did a huge hooplah hooray and clap and then I asked for a high five (which he hasn't done since he was 6 months old.. he is now 2 and a half). And for the first time ever he gave me the most energetic high five with so much gusto, I was almost pushed over. He was ever so present and I would never have felt so grateful of that if I hadn't been through everything else with my boys. The simple act of a high five was catapulted into the realm of pure awesomeness.
I felt overwhelmed with immense joy, but did not realise the magic hadn't finished yet! As I went for the 5th high five, Jack seemed to have fallen back into that state of the world he lives in parallel to us. The one where he doesn't look into your eyes and doesn't respond to a request for a high five... then he started to sing.. "Iiiiiiiiiiiiiiii loooooooooooooooooooove youuuuuuuuuuuuuuuuuu" and pointed to me!!! This is a child who doesn't understand pointing and is just only kind of getting it at the moment. Well I hit the highest note emotionally at that point. A euphoria I can only try to explain. Imagine thinking you will never ever hear your child say "I love you". He has only just started to sing it after copying a television program's song. But this time, he sung it to you. Pointed to you. I don't care who you are, this tops the all time faves of anything in the frigging world list!!!
So to me International Day of People with
And lastly, I am taking a stab in the dark here, but if my boys could tell you what it means to them... I think they would say it means that nobody has given up on them, everyone has believed in them 100%, they have been given so much love, support and opportunities, and most of all respect!!!
Thursday, 1 December 2011
Thursday, 24 November 2011
Wordless Wednesday... The "My 5th Wedding Anniversary" Edition..
Linking up with Trish from My Little Drummer Boys for Wordless Wednesday..
Although once again I can't shut myself up and must add a few words *insert cheeky winky face*.
Tomorrow is my husband and my 5 th Wedding Anniversary.
Five whole years of wedded bliss!!!
So I thought I'd do a trip down memory lane.. and for you all to have a glimpse into my past, my life and my personality (because we all know that a wedding represents our tastes and attitudes lol).
Can you tell I was nervous as hell??
Saying our vows
Applying the rings
Smoochy boochy
We just kept smiling and laughing the whole day!
Liam didn't want to watch his parents getting fresh lol
Posing with grins
My fave!
Oh what funsters we are!
CAKE!!!!
Bombonieres (there were Starburst lollies inside)
Introducing Mr and Mrs...
Garter action
Boogeying 'Pulp Fiction' style bwahahaha
Tuesday, 22 November 2011
Autism, best thing to happen to me.. WTF?!?!? I hear you say..
Yep I'm slightly WTF'ing this myself. But it's the truth.
My whole world has shifted more than ever with Jack's diagnosis, but shifted in the right direction.
I even question how and why this diagnosis is different to Liam's diagnosis. I mean Spastic Quadraplegic Cerebral Palsy is pretty major, it is severe and it is beyond life changing, but for some reason Autism affects in a different way, a more powerful way... well for me anyways. A way that changes your approach to situations, to other people, to your children. Your patience increases. Your awareness of situations increases. Your eyes see differently.
When I started therapy with Liam it was hard, it was hell. It was an uphill battle. I felt I was missing out on motherhood. And when I got Jack's diagnosis I thought that I would be on that same painful path. But instead I found a different approach to therapy. I shouldn't even call it therapy. It is called having fun, embracing what your child loves and building on that. It is indeed a different approach and not everyone who has a child with a disability is on this type of journey. But working with Jack has made me re-think how to approach things with Liam. It has made me re-think my interaction with Evangeline. I am seeing that I have been experiencing 'motherhood' this whole time! And damn what a silly douche bag for not realising it! It may not be the 'typical' version of motherhood, but it's a version that millions are experiencing... I am not alone (remember approximately 1 in 120 children have Autism!!! and there's many with otherdisabilities diffabilities).
Anyways I'm going to be all over the place with this post, as I always am with things I get passionate about lol (yes I lol'd, just my insecure self getting in this post).
So as I was saying.. Autism, best thing to happen to me. Ok kind of selfish thought I know. Maybe I am the only one thinking this. And I most probably am. But hell I'm going to put it out there.
I was watching a documentary the other night called The Horse Boy and in it the father of a 4 year old boy with Autism said "Autism has made me a better father". I sat there nodding like a lunatic. Yes, yes, yes. I feel as a parent I have changed for the better, just in these last few months since Jack's official diagnosis. Not only am I feeling like I've improved as a parent, but as a human being.
How can one improve as a human being? I guess just in the fact that today I found joy, pure joy, in throwing streamers/cellophane in the air with my Jacky. Not to give, not to recieve. Just to be. To experience the simple fascination that shiny falling objects bring. I cried with a smile on my face. I looked at Jack and how he looked at the slowly descending spectacle. Seriously, how could you not be a better human for bearing witness to the miracle of life, of gravity, of colour and all those sensory sensations. To let go of the 'white noise' that we create in life. The unnecessary periphery that somehow takes up our mind space, our time, our energy.
Jack has taught me so much in regards to dealing with stress. When a person with Autism is stressed or excited they usually 'stim' or 'ism'. Such as flap, rock, jump, hum, bite etc. With my anxiety and depression I have noticed I calm quicker when jumping on the trampoline with Jack. Who knew the simple act of jumping continually could calm one down? Oh hang on that would be my 2 year old with a Diffability!
From learning about Jack I have learnt about myself. And certainly what changes need to be made. I am a work in progress, just as Jack is. As we all are.
My whole world has shifted more than ever with Jack's diagnosis, but shifted in the right direction.
I even question how and why this diagnosis is different to Liam's diagnosis. I mean Spastic Quadraplegic Cerebral Palsy is pretty major, it is severe and it is beyond life changing, but for some reason Autism affects in a different way, a more powerful way... well for me anyways. A way that changes your approach to situations, to other people, to your children. Your patience increases. Your awareness of situations increases. Your eyes see differently.
When I started therapy with Liam it was hard, it was hell. It was an uphill battle. I felt I was missing out on motherhood. And when I got Jack's diagnosis I thought that I would be on that same painful path. But instead I found a different approach to therapy. I shouldn't even call it therapy. It is called having fun, embracing what your child loves and building on that. It is indeed a different approach and not everyone who has a child with a disability is on this type of journey. But working with Jack has made me re-think how to approach things with Liam. It has made me re-think my interaction with Evangeline. I am seeing that I have been experiencing 'motherhood' this whole time! And damn what a silly douche bag for not realising it! It may not be the 'typical' version of motherhood, but it's a version that millions are experiencing... I am not alone (remember approximately 1 in 120 children have Autism!!! and there's many with other
Anyways I'm going to be all over the place with this post, as I always am with things I get passionate about lol (yes I lol'd, just my insecure self getting in this post).
So as I was saying.. Autism, best thing to happen to me. Ok kind of selfish thought I know. Maybe I am the only one thinking this. And I most probably am. But hell I'm going to put it out there.
I was watching a documentary the other night called The Horse Boy and in it the father of a 4 year old boy with Autism said "Autism has made me a better father". I sat there nodding like a lunatic. Yes, yes, yes. I feel as a parent I have changed for the better, just in these last few months since Jack's official diagnosis. Not only am I feeling like I've improved as a parent, but as a human being.
How can one improve as a human being? I guess just in the fact that today I found joy, pure joy, in throwing streamers/cellophane in the air with my Jacky. Not to give, not to recieve. Just to be. To experience the simple fascination that shiny falling objects bring. I cried with a smile on my face. I looked at Jack and how he looked at the slowly descending spectacle. Seriously, how could you not be a better human for bearing witness to the miracle of life, of gravity, of colour and all those sensory sensations. To let go of the 'white noise' that we create in life. The unnecessary periphery that somehow takes up our mind space, our time, our energy.
Jack has taught me so much in regards to dealing with stress. When a person with Autism is stressed or excited they usually 'stim' or 'ism'. Such as flap, rock, jump, hum, bite etc. With my anxiety and depression I have noticed I calm quicker when jumping on the trampoline with Jack. Who knew the simple act of jumping continually could calm one down? Oh hang on that would be my 2 year old with a Diffability!
From learning about Jack I have learnt about myself. And certainly what changes need to be made. I am a work in progress, just as Jack is. As we all are.
Monday, 21 November 2011
My Christmas Wish List....
Oooh now this is a tough one and I think if we are talking 'wish list' here we could be very wishful and erm far fetched with our requests, or we could be slightly realistic but pick things that are still out of reach. So I figured I would do two lists...
The 'so far fetched, no way in a million years' list
and
The 'possible if I had a bit more money etc' list
I am sure as you read along you will be mentally writing out your own list, so please share with me in the comments, because I may like something off your list too *insert cheeky winky face*.
Drum roll please *brbrbrummpbrrrump* (it's a sick drum)
The 'so far fetched, no way in a million years' list (although I still hold out a lot of hope)
Damn I need a third list...
The 'I hope my husband reads this and goes and organises these presents for me' list
The 'so far fetched, no way in a million years' list
and
The 'possible if I had a bit more money etc' list
I am sure as you read along you will be mentally writing out your own list, so please share with me in the comments, because I may like something off your list too *insert cheeky winky face*.
Drum roll please *brbrbrummpbrrrump* (it's a sick drum)
The 'so far fetched, no way in a million years' list (although I still hold out a lot of hope)
- Cure for Cancer (look I know it may sound wanky, but geez the statistics are freaking high and far from good, and if Cancer didn't exist my mum would still be here. So I'll be wanky if I want)
- Cure for Diabetes (yep selfish I know, but damn I am sick of worrying about blood sugar levels and complications such as blindness and kidney damage)
- Cure for Cerebral Palsy (I love Liam just the way he is, but I am pretty sure if he had the choice to walk, talk and feed himself he would certainly raise his hands for that!!!)
- A bigger house, with 5 bedrooms, 3 bathrooms, 4 car garage. All wheelchair accessible. Kitted out with every comfort for Liam. And of course comforts for the rest of us (like a 'man cave' for hubby).
- A big holiday, like going to Disney World in Florida, Las Vegas, New York, then London to visit relatives, France to visit a dear friend, Holland to visit more dear friends and then some tropical island hopping to chill out on the beach for days on end.
- Two cars, one kitted out with wheelchair accessibility and the other one for my hubby to get about in
Damn I need a third list...
The 'I hope my husband reads this and goes and organises these presents for me' list
- A pair of Red Cowboy Boots, because if you're like me and follow the amazing blog that is Edenland, you will feel this insatiable urge to buy cowboy boots after reading through her poetic words and moments of whimsy. Eden Riley represents a powerhouse of strength, gusto and awesomeness... and she wears Cowboy boots, and wants to be buried in them, so that really tells me one thing... cowboy boots are a must!!!
- Another tattoo... this time celebrating my children. I already have two tattoos. My first one, which was just a part of that "I'm going to get a tattoo" thing, and I chose an Eye of Ra. My second tattoo takes up a quarter of my back and it is in memory of my mum and my baby boy Dylan, included is their date of passing and a heaven-scape of stars.
So this time I want my three muskateers names tattooed on me with dragonflies and butterflies, representing life, growth, beauty, love and hope.
Not too much to ask... *insert pleading hopeful face*
I would love to hear from you all on your Christmas Wish lists (yes that is a plural there, now that we have established 3 different category of wish list). If you have a blog and haven't blogged about your wish list yet, please join in! I'd love to read it! Just tag my Facebook page to your blog post link when you finally post it on Facebook.
Oooooh I am now officially getting excited about Christmas!!!! And will now attempt to put up the Chrissy tree... wish me luck!
Monday, 14 November 2011
That moment when after SIX years of being a mum...
....you finally hear the word "Mummy" spoken by one of your children.
With their sweet little voice.
To your face.
Well at least to the reflection of your face.
Yeah that moment.
And it was my little boy who sees other human beings as objects. Supposedly.
Yes, today I was an object, but I was an object of his affection.
Jack and I were in front of the mirrored wardrobe. I was crouched next to him, when he gently placed my hands on his waist- his way of asking to be picked up.
I lifted him up and held him close, as we both looked over at our faces peering back at us from the mirror.
"Mummy" he chimed.
It's different from when a baby says "mama".
It's a word.
Not a babble.
And it sounds amazing.
Beautiful.
Poetic.
Magic.
Six years.
Six years of being a mum.
I have waited six whole friggin' years for this moment.
And it was so beyond worth it.
Goosebumps and electrical bolts.
You can't bottle that!
With their sweet little voice.
To your face.
Well at least to the reflection of your face.
Yeah that moment.
And it was my little boy who sees other human beings as objects. Supposedly.
Yes, today I was an object, but I was an object of his affection.
Jack and I were in front of the mirrored wardrobe. I was crouched next to him, when he gently placed my hands on his waist- his way of asking to be picked up.
I lifted him up and held him close, as we both looked over at our faces peering back at us from the mirror.
"Mummy" he chimed.
It's different from when a baby says "mama".
It's a word.
Not a babble.
And it sounds amazing.
Beautiful.
Poetic.
Magic.
Six years.
Six years of being a mum.
I have waited six whole friggin' years for this moment.
And it was so beyond worth it.
Goosebumps and electrical bolts.
You can't bottle that!
Wednesday, 9 November 2011
The Speech I made...
This is footage and the words from the speech I made at the fundraising Auction Night for the Early Intervention Support Group/Play Group we attend. I was nervous as hell and couldn't eat my dinner before hand lol. But I felt awesome afterwards *insert smiley and very relieved face*. If anybody asks you to do a speech, especially to tell YOUR story.. DO IT!!! Don't hesitate!
So here it is..........
So here it is..........
"Good evening everyone.
I am Yeran Bruce and this is actually my second time doing the ‘parent speech’ for KU Starting Points Auction Night. And I am very honoured to have been asked to do it again.
5 years ago I stood before a large crowd sharing the story of my little family at the time. It was just me, my husband Byron and our little baby boy Liam.
Liam was diagnosed with Severe Spastic Quadraplegic Cerebral Palsy at the age of 6 months old. We were told he most likely will never walk, talk, be toilet trained or feed himself. This was devastating news to absorb. Our paediatrician: The amazing Dr Michael Freelander had urged us to go to KU Starting Points to get as much help and support as possible.
Seriously we have never looked back.
Every week I would take Liam to group and it was like a second home. He loved it there and of course everyone loved him and his extremely infectious smile.
As Liam grew his disability became more and more obvious. By the age of one he still hadn’t rolled over, while other babies born at the same time were starting to crawl and walk. This was hard for me, but when I came to Starting Points those sad thoughts dissipated. This was the new normal, it was our normal. Our safe, little bubble.
Each day I spent doing Physiotherapy, Occupational Therapy and Speech with Liam. It was draining for both him and myself. But of course every minute was worth it, and what would seem like the most miniscule improvement for other people was huge for us! I remember working with him on using a straw, as we wanted him to move on from using baby bottles at some point in his life. I felt like it was never going to happen. That he’d be a 20 year old drinking from a baby bottle. Then one day while I held the straw up to Liam’s lips and was getting disheartened, I looked away, watching the tv... then all of a sudden I heard a sipping sound!!! Liam was drinking from a straw!!!! I was beyond ecstatic and couldn’t wait to share the news with everyone. A simple task, that others take for granted, was now cause for a huge celebration.
By the time Liam was 2, Byron and I were hoping for a sibling for Liam. A child that would be healthy and well in everyway. I ached to have that normal motherhood experience. We fell pregnant and couldn’t be more excited! We told everyone we knew and started planning for our future as a 4 person family. But at 20 weeks my waters broke and I gave birth to a little baby boy we named Dylan. It was another devastating blow in our lives, but it gave me the greatest perspective... whenever I felt sad about Liam’s Cerebral Palsy, I reminded myself that he was alive (he nearly died at birth) and that he was a happy, loving boy.
At the end of 2008, when Liam was 3, we fell pregnant again. This time I was more anxious than ever before. I couldn’t enjoy this pregnancy. I was just plain worried all the time. In the last trimester I spoke to Liam about the brother he was about to have. I am more than certain he understood.
Funnily enough I remember telling a few people my worry for Liam’s feelings.. that he will see a younger sibling grow before him, without a disability and how unfair that was and that the only fair thing would be if his brother had one too. Strange thing to say, I know. And the irony of what was to come has not evaded me.
At 35 weeks my waters broke... on April Fool’s Day no less. I had to convince Byron I wasn’t joking. And on April 2nd Jack was born. Everything was perfect with him. No seizures and apneas like his older brother had at birth. We breathed the biggest sigh of relief. When Liam first met his little baby brother at the hospital, you could not wipe the huge grin that had permanently taken residence on his face. Lots of pics were taken and all was right with the world... Or so we thought.
At 3 months old I noticed Jack was a very tired baby, very weak. I started to panic. Thinking ‘Oh no he has Cerebral palsy too! ‘. He also started going blue in the face every time he got upset. I spoke to those around me about it.. they dismissed it ‘oh all babies go a bit blue if they cry hard enough’ or ‘its just wind’.
I had this instinct to go to our trusty paediatrician and ask him for a thorough check over. He responded with “His muscle tone is good’, so he ruled out CP. ‘But you’re going to kill me for this’ he said ‘I can hear a murmur, a possible hole in his heart’. We shrugged it off, saying Liam had that too and so do lots of babies, but we will have to get it seen to by the cardiologist.
At the cardiologist appointment, Jack laid there for an Echocardiogram aka heart ultrasound at the age of 4 months. He was so well behaved and I even remember thinking to myself how I will remember this moment for the rest of my life.. Jack cooing at the Dr and smiling. But i didn’t realise how much i would remember this moment for other reasons. It was when the Dr finished the scan that she turned to Byron and myself and said “Your son has a congenital heart defect called Tetralogy of Fallot. And the only treatment for it is Open Heart surgery”. There are no words for that moment. Another devastating blow on top of the other blows we had received over the years.
Thank goodness for the love and support of the staff and parents at KU Starting Points. It really helped me and my family through that whole terrifying experience.
After a very scary 3 weeks of hospitalisations for Jack as he kept turning blue from the lack of oxygen in his blood due to the heart defects, we finally got him into surgery.
I can’t even tell you how i felt. It was a blur. But I know that I wasn’t resentful of the surgery as this was what was going to save his life.
The surgery was a success and Jack was sent home after a week to recover. We had to pick him up like a newborn again. I also was very wary of giving him tummy time and pushing him to do things physically. So when he was late in some milestones, I just overlooked them. I mean he was powering ahead of Liam, so I didn’t see Jack as behind.
And i guess another thing that took my mind of jack’s development was the surprise pregnancy of our last child. This pregnancy was more draining than ever. But definitely worth every bit of tired achiness. And after an uneventful 9 months, I gave birth to a healthy baby girl, Evangeline. The three children were more work than I ever imagined.
Through all this we still tried our best to attend therapy appointments for Liam, but it was hard.
One speech therapy appointment will always stick in my mind like glue. As we had finished Liam’s session I casually asked the speech therapist how many words should a 15 month old have by now and mentioned a friend who was taking their child to speech at 18 months old because they only had a few words. She asked me how many words was Jack saying... I said none. Hmmm she suggested to take Jack on for speech.
I thought, well it’s through the hospital, it’s free. Why not?!
Our following appointments slowly revealed bits missing from Jack’s development. Was he pointing at objects? No. How is his eye contact? Minimal. Then I realised what the speech therapist was driving at. Jack might have Autism.
Of course the seed was planted in my head and that equals me googling like a mad woman. Goosebumps. Everything I read, it was Jack. I was then watching Jack like a hawk. Observing every spin, every flap, every rock. Everytime he avoided my eyes.
I went back to our fantastic paed again. Something like a revolving door really. And I told him about Jack. He asked if jack was affectionate. I had never really thought about it. But no I was the one giving the hugs and kisses and half the time I was being pushed away. Dr Freelander then said that kids with developmental delay tend to display autistic traits, we will give it time and see how he develops, especially after Liam starts school.
You see everyone who knew us, friends, professionals and staff, had reassured us that many siblings of children with special needs tend to be a bit behind. Larraine, the amazing superhero that runs Starting Points had said reassuringly “you are not unique in that a brother or sister has been delayed because of their older sibling”. But she said she would observe Jack through the first term that Liam was at school just to make sure everything was ok.
At the end of that term Larraine pulled me aside and had that look I’ve known so well from professionals over the years about to tell me something serious and in effect life changing. She said she could see behaviours that aren’t normal. She didn’t want to say Autism, because of course a paed would have to make that diagnosis. But I knew.
I knew, but felt I couldn’t move forward until I got the diagnosis in black and white print. It was torture. Waiting. I couldn’t grieve like I was able to about Liam’s diagnosis, because the process was much slower.
And the day we got the official diagnosis was the day I got to experience the grief, but strangely enough the bigger feeling I had was relief! Finally! We could move forward. We could make a plan of attack. I could stop trying to convince people of Jack’s behaviours and start to celebrate all the good things about him.
Every now and then I stop and think. Oh my goodness, I have a child with Cerebral Palsy and a child with Autism. Is this really happening? Then I look at every awesome thing they bring into my life and into those lives around us. How lucky I am to have them. I get to witness miracles on a regular basis. I have an opportunity to teach the world about my boys and their ‘super hero’ abilities.
And if it wasn’t for KU Starting Points, I really don’t know how or where we would be.
And looking at our story, it shows you need to believe in yourself, trust your instincts. As well as believe in your children. They are amazing and will achieve so much.
Thank you."
Tuesday, 8 November 2011
Wordless Wednesday ..Bathtime miracle...
I'm linking up with Trish from My Little Drummer Boys for Wordless Wednesday.
Ok it's not so wordless, but there are no words for his awesomeness. Liam shows us how to use the abilities that he does have. Love this boy to bits...
Ok it's not so wordless, but there are no words for his awesomeness. Liam shows us how to use the abilities that he does have. Love this boy to bits...
Wednesday, 2 November 2011
Something about letting go....and Kicking Ass!!...
Ok so the last post I made was a vlog where I fell apart.. just a bit. I was worried about every aspect of my life. I didn't know whether I was Arthur or Martha. I wanted to be everything to everyone. I wanted to complete every possible task I thought was expected of me. And then I realised I didn't have to.
Da-dah! Epiphany time!
After talking to some very amazing people and reading The Imperfect Mum's blog post on the expectations we put on ourselves (nobody else puts them on us!), I was able to gain some perspective and understanding of my situation.
I was the one thinking I should be doing this and that.
I was the one that placed the pressure on myself to be this, that and the other.
It was all in my head. And I had the power to change that!!
I know changing what goes on in your head is actually bloody hard. And I'm not saying I am a professional and what I do will be a fail safe approach to helping with that depressed, overwhelmed feeling. But I thought I would share what helped me to get through the last few weeks, or was it months?? Damn, it can screw with your sense of time.
First thing I did was: LET GO!
Almost like bungee jumping off the bridge and saying "Weeeeeeeeeeee!!!".
I stopped stressing that the dishes weren't done. They will get done. Sometime.
I stopped trying to control everything that was happening because *newsflash* you just can't!
I stopped wanting to 'fix' my children right here and right now. My main thing was to just plain enjoy them! A happy mum equals happy children. True story! If they see me stress about trying to fit in this amount of time on this amount of therapy etc, said therapy would be null and void anyways.
Second thing I did was: TAKE BABY STEPS!
Tackling things a little bit at a time. A mouse can eat a whole block of cheese as long as it nibbles, otherwise it would choke!
I had to realise everything worthwhile takes time and so can I.
Writing a list, prioritising and then slowly making my way through it... or not. I make the rules. The rules that suit my life, my family, the situations and experiences I am faced with.
The last thing I did was: CHANGE MY PERSPECTIVE!
So every time my negative thoughts came through and tried to drag me down to the deep depths, I put on my ninja persona and did a judo chop.
It also helped to have such a wonderful 'cheer squad' from my friends IRL (in real life) and those in the 'blogosphere'. Support is definately a big factor in making it through such tough times, whether it be mentally or situationally (that's a real word right?!?).
Now it's time for me to move forward and KICK ASS!!!! Who else is with me?
Da-dah! Epiphany time!
After talking to some very amazing people and reading The Imperfect Mum's blog post on the expectations we put on ourselves (nobody else puts them on us!), I was able to gain some perspective and understanding of my situation.
I was the one thinking I should be doing this and that.
I was the one that placed the pressure on myself to be this, that and the other.
It was all in my head. And I had the power to change that!!
I know changing what goes on in your head is actually bloody hard. And I'm not saying I am a professional and what I do will be a fail safe approach to helping with that depressed, overwhelmed feeling. But I thought I would share what helped me to get through the last few weeks, or was it months?? Damn, it can screw with your sense of time.
First thing I did was: LET GO!
Almost like bungee jumping off the bridge and saying "Weeeeeeeeeeee!!!".
I stopped stressing that the dishes weren't done. They will get done. Sometime.
I stopped trying to control everything that was happening because *newsflash* you just can't!
I stopped wanting to 'fix' my children right here and right now. My main thing was to just plain enjoy them! A happy mum equals happy children. True story! If they see me stress about trying to fit in this amount of time on this amount of therapy etc, said therapy would be null and void anyways.
Second thing I did was: TAKE BABY STEPS!
Tackling things a little bit at a time. A mouse can eat a whole block of cheese as long as it nibbles, otherwise it would choke!
I had to realise everything worthwhile takes time and so can I.
Writing a list, prioritising and then slowly making my way through it... or not. I make the rules. The rules that suit my life, my family, the situations and experiences I am faced with.
The last thing I did was: CHANGE MY PERSPECTIVE!
So every time my negative thoughts came through and tried to drag me down to the deep depths, I put on my ninja persona and did a judo chop.
I had to be very conscious of naming all the positive things in my life (no matter how small or supposedly insignificant) and focussing on them.
I understand that not all circumstances would be helped by using these steps. But for me they have done a great deal.It also helped to have such a wonderful 'cheer squad' from my friends IRL (in real life) and those in the 'blogosphere'. Support is definately a big factor in making it through such tough times, whether it be mentally or situationally (that's a real word right?!?).
Now it's time for me to move forward and KICK ASS!!!! Who else is with me?
Monday, 17 October 2011
Ten Things that aren't 10 Things... My First Vlog
I have been challenged by two beautiful Blogger ladies Gemma @ My Big Nutshell and Jess @ Whoa Mamma! to do a "Ten Things You Didn't Know About Me". But I have a feeling some of you may already know what I'm vlogging about. But I didn't know what else to talk about at the moment. It is more of a vlog about why I haven't been blogging much of late.
Having a look at it again, I realise it is a mess of a vlog and doesn't really do anything but maybe bring back a bit of the old Blair Witch Project thing....
But oh well, it's me. It's my first vlog. I apologise in advance.
PS: I forgot to add that I thank those who have said I'm a great mum and it is quite a compliment to be called 'amazing'. But I can assure you I am far, far, far, far from amazing. Just because I have two children with special needs does not make me an exceptional person. But hopefully one day it will turn me into an exceptional person lol. Being a parent is hard no matter what and I take my hat off to all parents trying their best, because that's all you can do is try.
Having a look at it again, I realise it is a mess of a vlog and doesn't really do anything but maybe bring back a bit of the old Blair Witch Project thing....
But oh well, it's me. It's my first vlog. I apologise in advance.
PS: I forgot to add that I thank those who have said I'm a great mum and it is quite a compliment to be called 'amazing'. But I can assure you I am far, far, far, far from amazing. Just because I have two children with special needs does not make me an exceptional person. But hopefully one day it will turn me into an exceptional person lol. Being a parent is hard no matter what and I take my hat off to all parents trying their best, because that's all you can do is try.
Thursday, 6 October 2011
Funeral Attire....
Ok so the title sounds morbid and I guess it kind of is.
But I was driving past a funeral the other day and my first thought was the obvious: "oh that is sad, I feel for the person that has lost their life and for their loved ones".
A sea of tailored black suits and dresses, skirts and shirts, ironed and starched.
Shiny patent leather shoes. Clicking and clacking.
Hats tipped to hide the welling eyes.
Quivering lipstick.
Then all of a sudden I had the strange random thought "I do not want people to get dolled up for my funeral!!".
The idea actually pee's me off a little, that people spend all this time and effort getting into a fancy outfit, get all made up, and basically look amazing, to farewell a person who has passed away. How does that honour them? How does looking amazing at a funeral really do the 'guest of honour' justice?
Seriously I would love everyone to just rock up in their pyjamas (and no not some fancy pants Peter Alexander number or a Victoria's Secret get up). I am talking just get out of bed and head to my funeral, with bed hair and all. Morning breath optional.
I don't want anyone posing with a handkerchief.
I don't want any smear of make-up on anyone.
Because when it comes to love and when it comes to grieving, neither needs to be 'dressed up'. The heart and the soul will provide the aesthetics.
How would you like everyone to dress at your funeral? Just something random to ponder....
But I was driving past a funeral the other day and my first thought was the obvious: "oh that is sad, I feel for the person that has lost their life and for their loved ones".
A sea of tailored black suits and dresses, skirts and shirts, ironed and starched.
Shiny patent leather shoes. Clicking and clacking.
Hats tipped to hide the welling eyes.
Quivering lipstick.
Then all of a sudden I had the strange random thought "I do not want people to get dolled up for my funeral!!".
The idea actually pee's me off a little, that people spend all this time and effort getting into a fancy outfit, get all made up, and basically look amazing, to farewell a person who has passed away. How does that honour them? How does looking amazing at a funeral really do the 'guest of honour' justice?
Seriously I would love everyone to just rock up in their pyjamas (and no not some fancy pants Peter Alexander number or a Victoria's Secret get up). I am talking just get out of bed and head to my funeral, with bed hair and all. Morning breath optional.
I don't want anyone posing with a handkerchief.
I don't want any smear of make-up on anyone.
Because when it comes to love and when it comes to grieving, neither needs to be 'dressed up'. The heart and the soul will provide the aesthetics.
How would you like everyone to dress at your funeral? Just something random to ponder....
Wednesday, 5 October 2011
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
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....
Wednesday, 14 September 2011
R U OK?????
Today I am linking up with the amazing Gemma from My Big Nutshell for the Bloggers Collective for R U OK? Day intiative.
I haven't had a chance to write on my blog for a couple of weeks. I've been a bit run down and a little 'out of it'. But I knew I had to get my blogging energy back just for today as this is an important issue.
Recently a speech therapist from the CP Alliance came by for a home visit for my eldest son Liam. And after going through all the formalities of our goals for Liam, the speechy turned to me and asked "Are you ok? How are you coping?". I almost cried. I have been putting on a brave front for so long, as us Aussies usually do and this moment, a person asked me with sincerity how I am. Of course I am ok as compared to what I have felt in my past. But the fact someone took the time to ask me and was prepared to listen... well that made a huge difference.
When I posted about my eating disorder battles/depression, I had feed back from friends who knew me from 'back in the day' and they had said "I knew something was up. I would've said something if it was the me of today". Yes indeed, hindsight is a wonderful thing. Luckily I didn't tip over the edge of that precipice and I am here today to talk about it. But as a society we need to know how important it is to ask these three words: R U OK? And not just to those who we can see going through a self destructive streak. It could be anyone. Anyone with a smile on their face and jovial words passing their lips could be in need of an ear to listen and a shoulder to cry on.
And when you do ask... really mean it. Be ready to listen. It's not a conversation to offer solutions. It will be a conversation to offer a non-judgemental ear and a huge bear hug.
Wednesday, 31 August 2011
The Night Before...
This time two years ago, I was laying on my eldest son's fire engine bed. Hyperventilating. Scream-crying. I don't know how I got to laying there. I just have this vivid memory of lying there.
"Just check my left breast!" I wailed to my husband.
I felt tingling, almost pain sensations in my left breast. I was convinced I had breast cancer.
The panic sent electrical pulses through my body.
My heart started to gallop harder, faster.
A metallic taste built in my mouth.. the taste of fear.
"I don't want to die", I pleaded with my husband.
"You are not going to die Yeran".
The look in his eyes was of confusion. Confused by what he was seeing in his wife...
And I was confused too. Why was I feeling like this? Why wasn't I thinking about the real issue at hand?
I should've been scream-crying about what was to happen the next day.
I should've been panicking about whether it would all go smoothly.
I should've been freaking out at the idea that my little baby boy was about to have his chest bone broken open, have his heart stopped, let big hands pry into his chest and cut away at heart muscle and patch up a large hole, all the while on a bypass machine.
I should've shed tears for all those things.
But instead my mind and my body had other ideas... a strange form of self preservation I gather. Instead of focussing on the actual matter at hand I was creating drama and fear somewhere completely different. Somewhere so unexpected. And I felt worse because the focus was on myself and my well-being. How selfish of a mother was I? I had never imagined that this is how I would feel or react.
I was inconsolable.
I had some good friends offer me valium.
They offered me an artificial zen. A zoned out calm.
I didn't take it.
I rode this horrendous wave.
And I woke up in the morning with no more tears. I was oddly refreshed. I was calm. I was a little nervous, but it was like the previous night's episode had cleansed me. It had literally scrubbed at my mind, at my insides and at my soul.
I was prepared for anything and I was wearing my WonderWoman t-shirt to prove it.
I don't know whether anyone else has ever reacted like I did in a similar situation.
But then again, anxiety, grief, trauma, all affect people in different ways. I guess there is no right and wrong in reactions... although having said that, there is society's unspoken laws on how to behave or react to situations. I try my hardest not to judge people on how they deal with situations. It is an entirely individual thing. As long as it doesn't harm anyone, I don't see why it should be deemed as wrong.
I would be interested to know how people have reacted/dealt/behaved in traumatic situations. And whether anybody has done the same as me....
"Just check my left breast!" I wailed to my husband.
I felt tingling, almost pain sensations in my left breast. I was convinced I had breast cancer.
The panic sent electrical pulses through my body.
My heart started to gallop harder, faster.
A metallic taste built in my mouth.. the taste of fear.
"I don't want to die", I pleaded with my husband.
"You are not going to die Yeran".
The look in his eyes was of confusion. Confused by what he was seeing in his wife...
And I was confused too. Why was I feeling like this? Why wasn't I thinking about the real issue at hand?
I should've been scream-crying about what was to happen the next day.
I should've been panicking about whether it would all go smoothly.
I should've been freaking out at the idea that my little baby boy was about to have his chest bone broken open, have his heart stopped, let big hands pry into his chest and cut away at heart muscle and patch up a large hole, all the while on a bypass machine.
I should've shed tears for all those things.
But instead my mind and my body had other ideas... a strange form of self preservation I gather. Instead of focussing on the actual matter at hand I was creating drama and fear somewhere completely different. Somewhere so unexpected. And I felt worse because the focus was on myself and my well-being. How selfish of a mother was I? I had never imagined that this is how I would feel or react.
I was inconsolable.
I had some good friends offer me valium.
They offered me an artificial zen. A zoned out calm.
I didn't take it.
I rode this horrendous wave.
And I woke up in the morning with no more tears. I was oddly refreshed. I was calm. I was a little nervous, but it was like the previous night's episode had cleansed me. It had literally scrubbed at my mind, at my insides and at my soul.
I was prepared for anything and I was wearing my WonderWoman t-shirt to prove it.
I don't know whether anyone else has ever reacted like I did in a similar situation.
But then again, anxiety, grief, trauma, all affect people in different ways. I guess there is no right and wrong in reactions... although having said that, there is society's unspoken laws on how to behave or react to situations. I try my hardest not to judge people on how they deal with situations. It is an entirely individual thing. As long as it doesn't harm anyone, I don't see why it should be deemed as wrong.
I would be interested to know how people have reacted/dealt/behaved in traumatic situations. And whether anybody has done the same as me....
Sunday, 28 August 2011
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.
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.
Thursday, 25 August 2011
Thankful Thursday blended with Things I Know... The Knight in Shining Armour Edition..
I am joining Kate from Kate Says Stuff for Thankful Thursday and Shae from Yay For Home for Things I Know... I just hope this isn't against blogging laws *shifty eyes*
And this Thursday I am ever so thankful for my husband... I Know This.
Well I am grateful EVERYDAY for him being in my life. But today I thought I'd shout it from the rooftops! Ok this isn't a rooftop, but damn it has more reach *insert winky and nodding face*.
My Knight in Shining Armour, he...
So I thought I would add some photographs of this amazing man that I am Thankful for and that I Know...
And this Thursday I am ever so thankful for my husband... I Know This.
Well I am grateful EVERYDAY for him being in my life. But today I thought I'd shout it from the rooftops! Ok this isn't a rooftop, but damn it has more reach *insert winky and nodding face*.
My Knight in Shining Armour, he...
- is always helping out with the children at the 'witching hour'. We tag team the bathing of the muskateers, the feeding, the putting to bed
- gives me the most passionate embraces... they're not just hugs, they go to a whole new level
- gets up in the night to Liam, and the other two are my allocated night 'buddies'
- cracks the most corniest, crappiest jokes when I'm not in the mood for them.. then I realise my mouth is breaking into a grin.. sly bugger
- listens to me and I mean really listens to me (or at least he's good at the facial expressions for it..)
- encourages me in whatever dreams or pursuits I desire
- has been through so much with me and has kept my head above water so many times
- never puts me down.. well not unless he's literally picked me up *snort*
- understands what my day entails and doesn't expect a spotless house, with all the chores done and dinner on the table.. lucky because otherwise I'd disappoint him *even louder snort*
- is 6 years younger than me, but he can be mature beyond his years.. sometimes...
So I thought I would add some photographs of this amazing man that I am Thankful for and that I Know...
Yep so loving, so caring and so mature...
But no, really, he is an adoring daddy..
And a very loving husband..
The one thing I definately know is...
I am so damn lucky to have him *cue corny sigh*
But no, really I am.
Wednesday, 24 August 2011
The Name Game...
My name is Yeran.
Pronounced like Erin with a 'y' (as in y-oghurt).
I hated, hated, hated that name for a long time.
Obviously my parents loved it to bits.
They were huge fans of unusual names and my sister and I were never going to be Sarah or Amanda or Lisa... you catch my drift.
Yeran..
I don't mind it so much now...
But at school. It was hell to have my name.
Across the playground they would yell: "Urine!" and I would cringe, hang my head as I felt my cheeks start to burn and my eyes well up with tears. Yeah I know, what a sensitive little princess I was to let that get to me. But it did. I mean if they had teased me about my hair, I could change that. I couldn't change my name.
Yeran.
It does fit me though.
It always did.
It's unusual. I am unusual.
I guess it just exacerbated my uniqueness. Which was not cool back in the Eighties. Hey maybe it's still not cool. Being different still seems to rub people up the wrong way, make them feel uncomfortable and 'induce' judgement.
With age and experience I have embraced my original, individual, madcap, crazy-ass self. And I've noticed so have a lot of people in the blogging world; they don't mind letting their 'freak flag fly', they're not afraid to 'go there' and I love it!!!
Anyways I'm off track as usual. Seriously this is what a conversation with me is like. It is certainly not linear, just like my blog.. I like to think I'm an iPod on random.
Back to names...
So even though I hated my name and I hated being different, I always wanted to name my children something unusual. I just didn't counter in the fact that the father of my children might not...
When I was first pregnant with Liam, I had been discussing names with Knight in Shining Armour. First I suggested 'River', he gave me a look of "WTF?", and I responded: "You know, as in the actor River Phoenix". He paused. "Hmm I don't mind Phoenix-". "Done!" I quickly pounced on the opportunity for hubby to agree with an unusual name.
A few weeks prior to the 20 week ultrasound, the Knight says: "I don't think I can name my son that. Phoenix. Nah too weird. Couldn't do it to him. How about William?"
"Hell no!". I was not having a boring name (*disclaimer: I really don't think William is a boring name.. I kind of like it, but I had my head filled with the ideas of my children being as weird as me and well William ain't on the weird side).
"How about we compromise?" I offered him: "How about we have the end of William? As in Liam?"
"Done!" I think hubby pounced on it so fast because it was normal enough for him to live with and I wasn't going to be given the chance to come up with some other fandangled f***ed up names (*disclaimer: I am not saying any names are f***ed up, my husband is, so get upset with him if you named your child Phoenix).
Funnily enough I am glad my husband is conservative. Otherwise we would have some names that we might very much regret naming our children.
I think my mum and dad only regreted naming me Yeran whenever I said "I hate my name!".
"But we love it Yeran"
"You don't get called urine. I do!"
Then my mum proceeded to tell me all the names she got called at school due to her surname.
Kids will pick on anything.
But I am hoping by choosing the names I did for my children, that their chances of being picked on might be slightly reduced. Maybe.
Knight in Shining Armour and I have tested the names out. Although I feel Jack has already copped it all from us. We titter when we say "When I dropped Jack off...haha Jack off haha", yep because we are mature like that. I guess we are getting him prepared for school in that respect. He would have heard it all before and it would be water off a duck's back.. or not. Either way, it's giving us a giggle.
I don't know whether Evangeline's name can be bastardised. I am sure some smart arse kid will come up with something. Evy will learn karate...
Who knew names could be so important to mull over! But they are important. A name is for life. It will be on your headstone. It will be screamed at a disobedient child. It will be screamed out in a hot and sweaty bed. We all want a name worthy of that now don't we?!?
Pronounced like Erin with a 'y' (as in y-oghurt).
I hated, hated, hated that name for a long time.
Obviously my parents loved it to bits.
They were huge fans of unusual names and my sister and I were never going to be Sarah or Amanda or Lisa... you catch my drift.
Yeran..
I don't mind it so much now...
But at school. It was hell to have my name.
Across the playground they would yell: "Urine!" and I would cringe, hang my head as I felt my cheeks start to burn and my eyes well up with tears. Yeah I know, what a sensitive little princess I was to let that get to me. But it did. I mean if they had teased me about my hair, I could change that. I couldn't change my name.
Yeran.
It does fit me though.
It always did.
It's unusual. I am unusual.
I guess it just exacerbated my uniqueness. Which was not cool back in the Eighties. Hey maybe it's still not cool. Being different still seems to rub people up the wrong way, make them feel uncomfortable and 'induce' judgement.
With age and experience I have embraced my original, individual, madcap, crazy-ass self. And I've noticed so have a lot of people in the blogging world; they don't mind letting their 'freak flag fly', they're not afraid to 'go there' and I love it!!!
Anyways I'm off track as usual. Seriously this is what a conversation with me is like. It is certainly not linear, just like my blog.. I like to think I'm an iPod on random.
Back to names...
So even though I hated my name and I hated being different, I always wanted to name my children something unusual. I just didn't counter in the fact that the father of my children might not...
When I was first pregnant with Liam, I had been discussing names with Knight in Shining Armour. First I suggested 'River', he gave me a look of "WTF?", and I responded: "You know, as in the actor River Phoenix". He paused. "Hmm I don't mind Phoenix-". "Done!" I quickly pounced on the opportunity for hubby to agree with an unusual name.
A few weeks prior to the 20 week ultrasound, the Knight says: "I don't think I can name my son that. Phoenix. Nah too weird. Couldn't do it to him. How about William?"
"Hell no!". I was not having a boring name (*disclaimer: I really don't think William is a boring name.. I kind of like it, but I had my head filled with the ideas of my children being as weird as me and well William ain't on the weird side).
"How about we compromise?" I offered him: "How about we have the end of William? As in Liam?"
"Done!" I think hubby pounced on it so fast because it was normal enough for him to live with and I wasn't going to be given the chance to come up with some other fandangled f***ed up names (*disclaimer: I am not saying any names are f***ed up, my husband is, so get upset with him if you named your child Phoenix).
Funnily enough I am glad my husband is conservative. Otherwise we would have some names that we might very much regret naming our children.
I think my mum and dad only regreted naming me Yeran whenever I said "I hate my name!".
"But we love it Yeran"
"You don't get called urine. I do!"
Then my mum proceeded to tell me all the names she got called at school due to her surname.
Kids will pick on anything.
But I am hoping by choosing the names I did for my children, that their chances of being picked on might be slightly reduced. Maybe.
Knight in Shining Armour and I have tested the names out. Although I feel Jack has already copped it all from us. We titter when we say "When I dropped Jack off...haha Jack off haha", yep because we are mature like that. I guess we are getting him prepared for school in that respect. He would have heard it all before and it would be water off a duck's back.. or not. Either way, it's giving us a giggle.
I don't know whether Evangeline's name can be bastardised. I am sure some smart arse kid will come up with something. Evy will learn karate...
Who knew names could be so important to mull over! But they are important. A name is for life. It will be on your headstone. It will be screamed at a disobedient child. It will be screamed out in a hot and sweaty bed. We all want a name worthy of that now don't we?!?
Tuesday, 23 August 2011
Wordless Wednesday.... Taking off the 'Mummy hat' and going all rockstar on that..
Join in with My Little Drummer Boys for Wordless Wednesday, it's a lot of fun *insert a big smiley face*
Subscribe to:
Posts (Atom)