The Powerful Community You Connect With When Your Child Has a Disability

It feels like two opposing forces are at play when your child is diagnosed:

1. So much is taken away.

2. So much is gained.

One minute I was a mum of a healthy 3-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 was my daughter’s health taken away, the way in which I was now perceived in society shifted. I felt the pity from strangers as they stopped and enquired 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 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 of long medical words that I would break down simply to try and 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. Yet so much of their energy is taken up in trying to fit back into society, with a new label that is 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 about 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 you see a flash forward of what your child may look like in the future in a sea of adaptive and medical equipment.

Your mind feels a little hazy when they 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, as you are certain the only way you will ever find peace, is if a cure is created for your child’s condition.

Here’s the mysterious thing, when the times comes, when really understand, no actually I should say when you believe what they tell you, real joy starts to unfold within your family. There is some point along the journey where you realize 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 OK, 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 journey’s. 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. So much so, that we feel great despair at the loss of a child, as if they were our own. Our child’s diagnosis may initially connect us as strangers, but quickly bind us to be so much more.

There’s a magical gift that occurs between families. 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 to their parents, whose heart 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.