Thursday, 3 May 2012

If love could cure 'syndromes'.

Every time I talk to a medical person about an appointment Rukai needs due to DS I want to glue my ears shut with chewing gum.

It's innocuous I'm sure.  They mean nothing by it, I'm sure.  But this one referred to the doctor who leads the 'syndromes clinic'.

Good lord, that word is so negative.  It's so ugly.  It's so limiting and smacks of low expectations.  It just makes me want to jump in the shower and scrub it off.  Is this how I'm going to react every time?

How many other words will I add to that list before he's a year old?  How many lumps in my throat will I have to choke back?  How many tears will escape anyway?  How will I ever be strong for him when some days I find it so hard to be strong for myself?

I want to pound my fists.  I want to throttle someone.  I want to curl up in a ball.  I want to go back to before he was born, when we didn't know.  When everything was still ok. 

And then I look at him sleeping off his breakfast.

Just nestled in like any normal baby.  Just snoring away like mama.  My little angel boy.  My squidge.

Damn this is hard.  If love could cure 'syndromes'.  If only.


  1. Someone on your FB page said you'll find the strength. They're right. As time goes on, you'll find strength within you that you never knew was there. It's there already, but it takes time to show itself. Give it time. It'll happen. And in the meantime, continue to enjoy your little bundle of perfection - because he IS perfect. The medical experts may not think so, but you know he's perfect and those who love you know he's perfect just as he is. xo

  2. Thanks MF. Most of the medical 'experts' so far have been an expert pack of insensitive gits and I fully expect this to continue so will HAVE to grow a thicker skin. I can be a tough nut but this has taken it to a whole new level that I was unprepared for. Not unprepared for the condition, but rather for how badly these people have been in helping us manage (treat us like uninformed idiots and rub salt in the wound at every turn.)

    The sick thing is, they think nothing of it. Their behavior is standard practice. They are 'just doing their job'.

    And we are 'just raising our son'. In OUR way, not theirs. If they won't budge nor shall we.

    In the meantime, know that we are indeed enjoying our little bundle. More than there are words to explain.

    I am so grateful for the support of our family and great friends like you. xx