Thursday, 24 May 2012

Realistic Expectations

Sitting here with a pen and piece paper I'm trying to write a list of realistic expectations for Bree's development. The things that we would like to see her do in the upcoming months and years.

As part of Bree's induction into Cerebral Palsy League we have been asked to list our long term goals for her. It's supposed to be a way to work out what we want to achieve and what we need to do to get her there. But for us it feels like a hard slap in the face, a bucket of icy water thrown over you on an already freezing cold day. For us it's a harsh reminder that Bree won't be able to do so many things we all take for granted.

What do we want for our little girl? 
We want her to lead a normal life. We want her to walk and talk and run and play. We want her to be an average, normal kid that plays sports and does dancing, learns to swim and rides a bike. We want her to grow into a cheeky child, a typical teenager and a lovely lady. We want her to do well at school, have a successful career, meet a wonderful guy, succeed in every aspect of life. We want her to enjoy her life and have every opportunity available to her. We want what any parent wants for their child, we want her to be happy.

But, we don't get that and neither does she. We don't get the excitement of those first steps, that first sports carnival, her first dance lesson or the first wobbly bike ride.

We have to sit down and make a realistic list of expectations...

We don't even know what is considered realistic anymore. We want her to walk, that's not realistic. We want her to sit upright, that's not realistic. We want her to maintain head control. Guess what? That's not realistic either.

So what are we supposed to expect of her then? 

Realistically we would expect her to be able to eat, it's a simple thing, right? It's a realistic expectation, right?
No, apparently it is not. 
To eat means being able to adequately control all of those 20+ muscles required to chew, suck and swallow.
Bree can't. 
Practice makes perfect, so if we work on it hopefully she can make progress, right?
No, apparently not.
To be allowed to try to eat now Bree has to pass a swallow test to make sure she is not actually putting the food straight on her lungs, we are almost 100% sure she actually is.

So if something that is such a basic requirement isn't realistic where does that leave us?

It leaves us here. Where we always seem to be. 
It leaves us dealing with the medical so we can try to make headway with the physical. 
It leaves us wondering what would be if only things had happened differently. 
It leaves us feeling gutted and heart-broken. 

It leaves us with a blank page.