It could be worse.

Four words most parents of children with disabilities get fed up of hearing.

With every right, too.

‘It could be worse’

Who decides for us what is enough, what we need and what we should be grateful for?

I only had to prove in the past 7 years, repeating myself over and over again, that my son lives with a rare condition that has seen him endure one of the rarest brain operations there is.  I had to prove this to get the help he needed.

We only had to watch him suffer countless seizures over many years to finally come to the conclusion that we had no option but to hand him over to a surgeon to perform the surgery.

But yes, it could be worse.

We only had to separate our family over the years, between splitting our time between hospital and home, and forgoing many other opportunities to bond as a family, like weekends away, that resulted in an emergency hospital trip.  We lived on high alert and still do, with watching him and evaluating his health at crucial times.

But yes, it could be worse.

As parents, we’ve watched our other children endure heartache and pain that no child should have to, as they wonder if their sibling will come back home, when their sibling will ‘get better’ and how long will mum and dad be away for this time.

As siblings, we don’t want to burden our mum and dad with our worries, because we see they have enough of their own, so we push our feelings down until they rise again and consume us.  As a child we start to develop our own anxiety issues because of this.   We don’t really know what to say, because no one asks us.

But yes, it could be worse.

However, we are forever grateful that we can continue to share our story with those who want to listen, and for those that aren’t interested in our story, we start to move in different circles.

We hear and see people around us complain of trivial matters, that seem so pointless to us when you have nothing else to occupy your mind other than one’s own ego.  To not see the value of giving what you have, rather than comparing what you have.

Yes, it could be worse.

We find our children present to us ways in which their challenges bend and stretch our own imaginations to help them reach their full potential.  We find a joy in the simple things in life, that may not seem flash and exciting but instead invite warmth and comfort.

We watch as others pass through the years with countless tales of competition, feelings of self doubt and try to find comfort in material objects to make up for the lack of real depth that they are truly seeking.

So yes, it could be worse.

We watch with wonder as our children are growing and exploring the world in a most mysterious way that we want to be part of.

We feel that people who miss this opportunity nor appreciate the gift that our children give to us are in fact the ones missing out.  We feel like the most fortunate ones that are able to bear witness to this extraordinary gift.

So yes, I guess it could be worse.