Time stands still in the magical moment when we meet our child for the first time. Their smell is intoxicating, every movement a marvel – we’re completely, immediately entranced!
And for some of us, the trance is just as immediately broken by an unexpected diagnosis…
Down Syndrome it was for us. Completely out of the blue, and we worked hard to maintain the wonder and the intoxicating trance of his early days so he’d never know our heartbreak.
He was baby #3 and boy, what a different, surprising and wonderful journey it has been – for all of us! It took us months to get a handle on what to do and how we as a family were going to help our new little man, but we emerged from the initial shock as a united team with a common goal and a smiling, beguiling new focus.
We quickly realised we’d had things pretty cruisey with babies 1 & 2. Our little girls were rarely sick, they developed ahead of schedule most of the time and they happily tagged along with us in our fairly chaotic lifestyle. Apart from loving them, feeding them well and keeping pace with their unending curiosity, we felt that we didn’t do anything special to help them along.
But not so with #3.
I rocked up to our first doctor’s appointment and asked for the booklet, the pathway which must surely be laid out for a natural-minded parent like me who wanted to help our angel to keep healthy and achieve his best? But no such booklet existed, furthermore, no such active pathway was available in any form! Nothing can be done, I was told, ‘Would you like to speak to one of my patients who has a Down syndrome child in his 20s? You can ask what it’s like?’
This was loneliness of the highest order… in a field I knew nothing about. If there was to be a pathway, I was going to have to create it, it seemed.
My days of innocent motherhood were over.
Special needs parenting is extreme parenting, if you ask me! Suddenly, you have to learn to do everything faster, longer, more intensely and if you didn’t have an opinion before, you most certainly do now! But whatever your background, your experience or your beliefs, nothing can prepare you for any of it – I don’t think.
First comes the emotion, the boundless love, the 1000% commitment and then the burning discovery of something powerful within yourself – something which comes from nowhere, telling us that we must fight and win for our beloved child.
And whether you’re a love-them-as-they-are or a try-to-make-a-difference kind of a parent, this ember burns and burns….. and so far, after 7.5 years, it’s showing no signs of going out.
I realised pretty quickly that my path with Gryffin was going to be an active one. Not that we gave much thought to whether or not we would try to make a difference to outcomes or to challenge mainstream medical ‘truths’. We just got busy because that’s in our DNA.
Call me sexist, but I believe that fathers protect and provide, but mothers have a primal instinct for helping their own children, an instinct we’ve had since time began. This is why it was I who started the fight for our little man. I became the researcher, the lounge-room student of neurology and the sniffer-dog-of-hope as I scoured the web for good news, extraordinary outcomes, complete and utter integration…
And I found it, so I got to work! Our G-man flourished, blossomed and outshone every miserable thought we had ever let enter our minds in the early days. He made us laugh and triumph and face our own prior opinions, some of them uncomfortable and happily now buried.
But here’s the thing: I also believe that children choose us. As mothers, we are the custodians of the child’s future. It’s as if they know what we will do in given circumstances and they select us for those choices. Whatever you choose to do for your child will be right for your child because – as my grandmother once said to me – ‘they come to live with you’.
As much as I personally railed against the term ‘special needs’, I can honestly say that something very special has happened to me as mother of my son; something different and exceptional which I never explored with or for my daughters. Something which I feel I would have missed out on otherwise.
Some speak of their children bringing gifts to the family and I agree this is completely true. But among the many gifts my son has brought to our lives is the gift of finding out who I really am as a Mum, and I’m pretty sure my fellow ‘warrior-mums’ would agree that this really is pretty special.