When it comes to having a child with a disability, there may be tears and there may be pockets of pain. But when people watch us, when they walk past and look a little closer at Raph, I always notice my head raise high with pride. By choosing to fight, we've made the best choice for him – to have life. There are lots of emotions that come with disability, but I promise you, sadness is not one of them.
Good mates are there at the best and the worst moments of your life. We all have a bank of golden memories involving the good times we have shared with our friends. These are the moments we always look forward to and there is nothing easier than having fun with your mates. What is not so easy is to be there for your mates when the going gets tough. Awkwardly putting your hand on your mate’s shoulder and talking through how they’re feeling when things are pretty rubbish is definitely not as fun as a summer afternoon drinking beers and watching the footy, but despite this, a good mate will recognise the signs that someone is doing it tough, and will insist upon offering whatever assistance is at their disposal.
After a lot of nervousness, I finally talk about the last 3 months including coming to terms with death, misscarriage, disability and the reality of having trust in hard times.
I’ve only been married 3 short years, and I’ve been a mother for even less, but yesterday I realised on reflection that in that short time I’ve had a range of different experiences as a mother. I’ve had both an emergency Cesarean and a normal birth, single pregnancies and twin pregnancy, experienced miscarriage, had a baby born with a disability, been both a stay at home mum and a working mum, had a healthy baby and a very sick baby, lived in NICU, have both exclusively breastfed and then exclusively pumped, I’m raising a boy and raising a girl. I’ve...Read more
Today is my daughter Cecilia’s 2nd birthday. It also happens to be World Down Syndrome day! I have mentioned this before how coincidental (or not) it is that she was born on this day & her brother soon after was born with Down Syndrome. I occasionally feel a little guilty that I write more about my son than I do about my daughter…and now, poor thing, she can’t even have this one day on her own birthday to herself! But the reality is she doesn’t need me to. She doesn’t need an advocate – she would be wanted and accepted in...Read more
I see another mother with a few kids, and I notice a great big hole in my own heart. Where I used to feel a connection to this mother I now feel nothing... ...I yearn for the old difficulties of a ‘normal’ mum. I realise I’m not part of that club anymore and it hurts, I suddenly feel totally isolated.
The word halcyon means “a period of time in the past that was idyllically happy and peaceful.” Well looking back on my life as it was only five short years ago, it certainly seems like those were my halcyon days....
There is no pain quite like the pain a mother experiences when her child is suffering and there is nothing she can do about it. It is a great ache and the heaviest cross.
“I don’t know how you do it” a friend comments as we pack up and get in the car. I laugh the comment off “oh you get used to it” but on my way home after a particularly painful event, I do think to myself, is this crazy? Should I be doing this?
The first half hour I spent with my son was an emotional rollercoaster like no other I’ve ever experienced. Emotions run high following any momentous occasion, particularly the birth of a child. However, when Raphael was born, things really went into overdrive. The first thing I noticed after he was born was that he looked a little bit like a child with Down Syndrome.