The facts about baby loss...

This is a list of facts I have compiled on this anniversary of my baby boy Dylan's birthday and passing. I thought it would be important to share:

• you never, ever forget your baby. Ever.

• the pain is there, but you learn to deal with it better over time.

• never say to a parent that has lost a baby/child "oh well you can always have another one". Never, ever say that. Ever! We can not have another Dylan. He was a one off. There is never a 'replacement'.

• talking about the experience openly has helped me deal with things better. But every parent deals with it differently. So let the parent take the lead. If they want to talk about it, listen. If they are silent about it all, just let them know that they can talk to you anytime. But let them know there is no pressure to talk at all.

• acknowledging our baby's birthday every year is beyond important. They will never grow old, but their memory grows with us, part of our family tree. They are that branch that never got to reach out and sprout leaves, yet they make our tree as glorious as ever.

I know this isn't a long list. But it will stay in your mind. It is simple and concise. I hope it helps many others in dealing with or understanding the loss of a baby.

Here's to all the parents with empty arms and to all those babies who grew wings too soon xxxx

Riding the escalator...

I know, I know. My blog does lean towards my middle child Jack. A lot. But his development, his experiences, they are really a mammoth part of our growth as a family and for me as a human being.
Not to say Liam hasn't opened my eyes to a million things and made me appreciate as much as I possibly can over the last six years of his life. But Jack is showing me a myriad of things in a different light. And of course Evangeline blows me away everyday too, yet I know that with her that is the 'normal experience'. With Jack I am experiencing life on a different level to the majority of society. And I like that. A lot.


Today my friend J, came along to help me take the boys out for the day. It is close to impossible to push the wheelchair and run after a child who doesn't respond to your commands and requests, by yourself. And of course super impossible with all three, so whilst Evangeline was at daycare today, I thought I'd have a 'boys day out'. I was imagining an outing to the botanic gardens... Liam enjoying the view, being wheeled along the paths and Jack running free, touching every leaf, every piece of bark, spinning around on the green expanse.... But no, my friend J complains that it is too hot and that it would be a painful experience (I'm not sure who he meant it would be painful for, but I'm guessing he wasn't feeling like sweltering in the summer heat). His alternate suggestion... the shopping centre....
A lump forms in my throat.
The shops.
I don't take the kids to the shops very often, because as I said before, I can't do it at all by myself. And well my hubby hates the shops. I use to take Liam all the time and he loved it. But Jack doesn't go very often and when he does we usually just pop him in a trolley so he doesn't run off or have a meltdown.
Ok. I thought. F**k it. Let's do this!
J was in charge of Liam.
I had my running shoes on for Jack.
I was mentally preparing for any type of scenario.
And any kind of looks from onlookers.
I popped a little backpack on Jack, to weigh him down, as per advice from his Occupational Therapist.
I held his hand.
And off the little dude toddled. Liam giggled with excitement watching his little brother ahead of him.
Now and again Jack would try to slip his hand away (palms were sweaty.. Summer heat was working to his advantage and so was my slight anxiety), but I just as quickly recaptured his little fingers.
Then we came across the escalator.
Jack had never been on one of these in his life!
He is almost 3.
We stepped closer to it. There was hesitation as he slid his shoes along the floor.
"Do you want to go on the escalator Jack?"
Pause.
"C'mon", I encouraged and pulled him towards the moving 'stairs'.
The look on his face was a mixture of fear, excitement, bewilderment.
We landed our feet on the next moving step. And whooshed forward and downward.
Jack's face filled with pure elation. It was like he took a hit of a drug.
Whoosh!
His eyes like saucers.
Mouth open wide, yet smiling at the same time.
And all of a sudden I felt like it was MY first ever ride on an escalator.
It was awesome!
What a rush!
I imagine it would be like this if you were from the 1920's, hopped in a time machine, zoomed into the future, say 2012 and was shoved onto an escalator.
I would never have had this experience if it wasn't for Jack and his Autism.
When we got to the bottom I scooped him up and looked into his face. I wish I had taken a photo. There was a glow.
I then thought he would love to go 'up' and headed to the neighbouring escalator.
He hesitated again. Stalling at the bottom. We let a group of teenagers go past us.
This time Jack wasn't budging. The teenaged girls whispered to eachother "aww how adorable" and then proceeded to cheer him on "Go on jump on! You can do it". I thought that was real sweet of them, but it didn't help and Jack turned on his heels and started to take off.
I managed to grab him and caught up with my friend J and Liam. This time I popped Jack on Liam's wheelchair. This worked a treat. Liam was grinning from ear to ear. The proud big brother, looking after his little brother. And Jack sat there content to watch the world of the shops whizz past him. I am lucky he is a Sensory Seeker and actually enjoys lights and noise (whereas there are people with Autism who cannot stand over stimulation and this makes shopping pretty much impossible for different reasons).
Of course we didn't over stay our welcome at the shops, because, well you don't want to tempt fate now do you??

So there you have it.

I rode the escalator today.

It was a mindblowing experience.

What blew your mind today?

Getting to the Point...

First I'm going to show you a photo....

This is my son, Jack, and what we do everyday.

He takes my hand and leads me around the house. Leads me to objects, to places, sometimes to no where in particular because he lost his train of thought and forgot where he was taking me. He places my hand on what he wants. Or if it's in the distance he 'throws' my hand toward it.

Jack does not understand the concept of "pointing".

It's part of his Autism.

I was blown away when the Speech Therapist told us that Jack cannot imagine the 'invisible line' between the tip of our index finger to the object we are 'talking' about.  It is something we all take for granted.

My Evangeline has been pointing ever since she was about 8 months old. And I never get bored of it. I really appreciate the ease at which she can communicate what she wants through the use of pointing.

But I also appreciate the way Jack has tried to overcome his difficulty with communicating with me. Of course there are times where it is impossible to know what he is trying to convey and this is common in Autism. Yet when I do figure out his form of charades I think it's ingenius and rather cute.

Of course there are those days where all three of my kids need me at the same time. Evangeline squealing as she crawls towards me, Liam looking at me with eyes that beg for a drink and then Jack insists I go with him... he grabs my hand and takes me all over the house.. over and over again. It gets exhausting. But then I think. He is trying to communicate so hard. The effort. The want. It's there in spades. Yet sometimes I have to refuse his hand. It hurts to do it. But the truth is I have two other children who need attention too.

Who knew pointing was so bloody important?

Who knew it could change the development of a child?

Who knew it could affect someone socially?

I point like a woman possessed these days. I model pointing like it's going out of fashion. I relish the fact others 'get me' when I'm pointing at something and that I am not muted by my lack of understanding the concept of pointing.

Next time you see someone pointing, you are so going to think of this post, aren't you? And you are going to thank your lucky stars you can do it and understand it and that those around you do too *insert winky face*

Photosplosion!!!...

Ok so I've been a bit absent from the blogosphere of late.
But, like, who noticed anyways!?!? Teehee.

Christmas took a huge front seat in my life and I spent all my time soaking up the rays and the love of my family *cue corny sigh*.

And going nuts on Instagram (because I just LOVE photographs!!!). And if you are on Instagram too lets follow eachother! My username is yezza_strangerthanfiction

I have always loved photography and for many years have dropped hints to hubby about getting one of those fandangled SLR's, but kind of thought it was a pipe dream. So on Christmas day waiting for my Red Cowboy Boots, hubby handed me a box. My heart skipped a beat. Really? Could this be it? It felt heavy enough... I didn't hesitate to rip like a woman possessed into the wrapping paper... I didn't want to raise my hopes any higher and thought the quicker I discover that this is just a heavy pot pourri bowl the better. Because it certainly wasn't looking like the shape of cowboy boots.

The moment I saw this:

I, um, lost my shit!!!!

I finally could indulge in some serious wanktastic photography!!!!

I haven't stopped since! Photographing that is... not wanking lol.

So I apologise in advance if my blog contains less words and more images for a bit, but hey I know you guys won't mind letting me indulge in such an artistic and creative display. Thus I may cheat and do "Wordless Wednesday" on Friday or Monday *insert cheeky winky face*.

Here is a sample of my first few "pieces of art":

Nothing is guaranteed....

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.

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.

• 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.

So with these three points in mind I would like to share the last few days that we have experienced in my house. I like to call my place "Our House of Miracles". Because after the diagnoses of our boys (Liam the eldest has Severe Spastic Quad CP and our middle child Jack has Autism with a Moderate Deevelopmental Delay) we weren't guaranteed anything in regards to development and so there was uncertainty to what our boys could achieve. Thus from that moment we were told of each child's diagnosis, we were able to see every achievement as a miracle, as the biggest celebration.

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 Disability 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!!!

Feeling a little blue?... Here's some medicine...

Laughter...

The Best Medicine