Tuesday, September 21, 2010

He's NEVER going to be "normal" - A pity party for 1 - Warning!!!

Oh My God.

It finally just dawned on me - well, not finally, and it's going to happen again & again & again as we go through each stage of life & we're not like "everyone else".

Where my Boogle - who never asked for this - who never did anything wrong - is going to NEVER go through life easily.  Where each baby-step is going to be a milestone... a HUGE achievement in the world & NEVER going to be up to the same level as his peers.

So, right now I'm researching health insurers - to see if we're getting the best deal for our money - to see if I can get more money back from them for using speech therapists & occupational therapists & god knows what else.

My poor darling Boogle - I'm not sure you're ever going to know how different the world is. Shukun & I see him struggle with speech - where he literally "forces" the sound out from his body - and it's not even clear most of the time. Or correct.

Today's favorite sound was "Goww".  It was the sound that explained "What is this?", "What animal is that?" "What noise does that animal make", "This is my interpretation on how to say the name of this animal and or thing", "This is my interpretation of the sounds that animal makes".  And you can see him really, REALLY trying - he watches our mouths for how to sound out the word and he WANTS it soooo bad... WANTS it like a passion & you see the cogs turning and then the sound he comes out with is like a compensation prize for what his mind/body will allow him to make. And there's almost a look of resignation in his eyes.

And I'm angry... I'm angry that my little boy has to suffer this.  I'm angry because apart from loving him, caring for him, helping him, teaching him, showing him, prioritising him... that I can NEVER fix this.  I can NEVER make it go away.  I can NEVER give him that life that I've been waiting my whole life to have with him.

Instead the Universe in its "infinite wisdom" has given my son these issues... and there's nothing I can do to fix it.

I said there were going to be days like this - I wasn't sure that I was meant to post them - but then I remembered what this blog is all about. The good & the bad... the strong & the weak.... the wins & the fails... both are equal... both are raw & healing.

1 comment:

  1. Ahhh, this is pointy, painful stuff. It does not go away easily. In some ways, I have learned to live with it, and often, now, there are so many other thing to focus on that it becomes background noise.
    All I can say for sure is it is OK to feel angry, sad, overwhelmed, pushed, pulled, stretched thin and scared.
    lean towards the people and things that give you comfort, that fill you up emotionally and spiritually. You have a lot going on that is going to empty your 'cup' of all your reserves. Not to sound trite but this is a marathon, not a sprint.
    Hugs to you, dear new friend.