Wednesday, 7 December 2011

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.

Saturday, 3 December 2011


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!!!