By: Natalie Roberts-Mazzeo
It feels like two opposing forces are at play when your child is diagnosed.
- So much is taken away.
- So much is gained.
One minute I was a mum of a healthy three year old, teaching yoga and enjoying family life. The next minute I was a mum of two beautiful girls, one healthy and one with a serious brain injury.
Life’s circumstances suddenly placed me into a ‘different’ category, the kind where the room falls silent when a pregnant mama says ‘oh I don’t mind if I have a boy or a girl, just as long as they are born healthy’.
Where conversations would flow awkwardly from then on, like the elephant in the room, where I would try and act as normal as possible as if unaffected by the silent divide of women in the room.
I was ‘that’ mother.
In the early days, my mind cycled on repeat through all the losses. It felt as though not only had my daughter’s health been taken away, the way in which I was now perceived in society had also shifted.
I felt the pity from strangers as they would stop and enquire why my newborn had a plaster cast, or why as a toddler she couldn’t hold her head up at times.
I was that mother – the one who had to have those bizarre kind of conversations that do not come so naturally with parenting. Instead of talking about a new milestone, a first word, or the first roll, or the first step, my conversations were vastly different. They were full of long medical words that I would break down into simple terms in order to explain the brain-injury to a friend, family member or someone in community.
This phase of a newly diagnosed family can be exhausting, quite simply because everyone within the immediate family unit is grieving on some level. So much of their energy is taken up with trying to fit back into society with a new label that has been stamped upon them – ‘a special needs family’. It feels like everyone is trying to re-integrate when the training wheels have been taken away; it’s wobbly, unsteady and so unstable.
Then, something starts to shift. The universe has a beautiful way of trying to rebalance and gain equilibrium. You start to connect with other families in similar circumstances. It’s both comforting and a little terrifying when through these connections you see a flash forward of what your child may look like in the future – in a sea of special needs equipment.
Your mind feels a little hazy when those that have trodden a similar path tell you that your child will amaze you, that you will see miracles, that you will find so much joy, that it will change your life… and for the better.
They will post photos of their children, with encouraging words.
You will see feeding tubes, wheelchairs, communication devices and more. It will feel confusing at first, as you are certain that the only way you will ever find peace is if a cure is created for your child’s condition.
But here’s the mysterious thing…when the times comes that you really understand – no actually I should say ‘believe’ – what they tell you, real joy starts to unfold within your family. There is a point along the journey where you realise you have grown into your ‘new’ and ‘unique’ family life and you find yourself encouraging those who have recently been diagnosed too. You assure them that all will be okay, that their child will achieve so much and most of all, that their life will change and for the better.
The community of parents raising children with additional needs is a powerfully close one, we all share and follow in each other’s journeys. We set up social media pages, blogs and not-for-profits. Together we advocate, create awareness and become like an extended global family.
I don’t say family lightly, I mean it. We become like family. Our child’s diagnoses may initially connect us as strangers, but we are quickly bound by so much more. There’s a magical gift that occurs between families, it’s like a filter is taken away and we connect straight at the heart.
What a powerful resource it is, that we can lean on one another, learn, educate and advocate together. That we can celebrate in all the micro-milestones and wins, and create a circle of support when challenging times kick in.
It expands our world to connect us with people that we would otherwise never have met. These people are your people. The children who through their sheer will and determination make us see what is possible, their siblings who teach us to embrace diversity effortlessly, and their parents, whose hearts broke into a billion pieces and slowly came back together because of people like you.
This community who found one another through a perceived loss, but in reality was actually a monumental life gain.