When is life ever fair? The way we look at our lives, revolves on the old saying “Is your glass half full or half empty?” Most of us feel like we’re running on empty and then some. I know I have that feeling of emptiness at least a thousand times a day. It’s okay to think that. I’ve turned that nagging feeling of emptiness into a roadsign for myself to recognise when I need to stop doing whatever it is and just rest.

We all know children are special creatures that comes with no manual. Parents are just expected to strap in for one helluva journey and do the best they can. Then there are the parents that have children that come with an extra level of specialness. A diagnosis for a child is a confronting and scary time. You think of a million and one ways of how you behaved through pregnancy, childbirth, the first year of baby’s life. Questioning every decision from, did I do enough to give my baby the best possible start in life by taking the mammoth sized multivitamin tablets the doctor suggested to what if it was the anti-nausea medication that affected my child? I could write out all of the questions I had, all of the things that I blame (and continue to blame) myself for. I don’t need to because new parents with a child that has received a diagnosis already knows those questions, so very intimately.

In the early stages of diagnosis, there’s two games to play; the denial game or the blame game. Neither are good, but new parents can’t help but either live in denial that there’s something wrong with baby or can’t help but place a heavy amount of blame on themselves. I’m especially speaking from experience here, mothers blame themselves so much.We carried baby for enough months to feel every kick, headbutt and hiccup baby does inside our bellies. We do everything in our power to give baby the right start, everything society and its experts tell us new mothers to be to be doing.

Sometimes society needs to back off mothers, trust that they’re doing the right thing. Having a child with a disability isn’t the end of the world; it’s a different kind of world, filled with so many people having opinions and suggestions. Society needs to grow into a world that holds inclusion in high esteem. If society did so, parents like myself wouldn’t be up at all hours of the night, blaming themselves for the things they did or didn’t do throughout pregnancy or childbirth, or worrying about how their children with autism, down’s syndrome, microcephaly, and so on will fit into the world. The world would be designed to accommodate and be patient with our children.

Society needs to remember that children don’t ask for disabilities, genetics is like russian roulette of what you will or won’t get genetically. Neither do parents pray for a child with extra needs. We all pray, hope, wish for happy and healthy babies. Sometimes healthy babies come with extra needs. Needs that should be embraced and included.