Special needs parenting isn’t pretty. I have been called to witness and endure experiences with my child, on my own, that no human being should have to do. Begging your child to keep breathing, living without sleep for almost three years, manually ‘burping’ your child by squeezing air out of her stomach into a 50ml syringe attached to a tube that’s fed straight into her gut, inhaling the stench of anaesthetic after countless procedures, and pinning her tiny body down with four other adults in a blood curdling attempt to bleed her…I wouldn’t wish any of these moments on anyone.

There are few words to truly capture the essence of what this special needs parenting journey is. But when I saw this photo of me carrying Mackenzie on my back during a weekend bush walk with family, a wave of awareness flushed over me and I heard the words, ‘This is special needs parenting’.

Special needs parenting is pushing your children beyond their perceived limitations and demanding more of them than anyone considers possible or appropriate.

It’s pushing the boundaries time and time again in hope of minute gains that could make a monumental difference to their lived experience. 

It’s pretending to look like you know what the hell you’re doing when in reality, every single move is being made up along the way.

It's pushing your own physical, emotional and psychological barriers as far to the edge as possible, beyond what anyone could ever consider possible or fair, and then going further still. Even when there is truly nothing left to give. 

It's breaking down barriers, often, releasing and letting go of all that you dreamed of so that you can see the potential for greatness through the lens of a comprised neurological system. Because, if I’ve learnt anything, it’s that our children are leading the way.

It's being fully immersed in the moment, no matter how challenging or light filled, and trusting that every moment serves a purpose. Even if you never find out what that was.

It's deep concentration in presence with profound awareness, guided by nothing more than an intuition you’re calling on, because no one else in the world has the answers you're searching for.

It’s learning, in time, that the answers you’re seeking have been right there in front of you ever since your eyes met theirs, and a love beyond time and space whispered to your heart, ‘You’ve got this, Mama’.

It's listening to your heart and looking within, even though it's really scary to do so. It's making a choice not to point your finger outward and project blame for all the things you're unwilling to take responsibility for. This is your journey. These are your decisions. Own them.

It's carrying your 45kg child on your back up and down steep and rocky terrain so you can bathe and refuel in nature. It’s choosing the hard road so you don’t miss another opportunity to live your own beautiful life. 

It's seeing these insignificant moments in time as remarkable feats and being able to smile at the realisation that you are, in fact, a goddamn super hero.

It’s being able to say ‘I’m really proud of my efforts’ even though you feel like your efforts are never quite enough.

It's choosing to accept what cannot be changed and fighting for the things that can be. It’s also choosing to reserve your energy for the fights that are necessary, and letting the small stuff go.

It’s letting go of guilt - what a bloody waste of energy that is.

It's diving deep within your Self and constantly choosing to commit to your Self and your child, no matter what comes up. You are important and time for You is undeniably necessary so you can continue to show up for your child.

It's giving yourself permission to fuck up and to forgive yourself when you do.

It's letting people in to support you - we are not supposed to do this on our own. And yeah, I know, ‘They can’t do it as good as you’. But you won’t have a choice but to let them in when you’re burnt out and in bed ill because you took it all on yourself.

It’s letting go of the bullshit story that you and your child are a burden to others. You're not. And neither is she / he. Your ridiculous belief denies your child of their right to experience and enjoy the love and care of others.

And that story doesn't serve you or your child. 

Special needs parenting is choosing not to be defined by the limitations, but welcoming the challenge to grow beyond them and expand yourself into a world of potential. Because I’m positive that's what our children are here to show us.

You just need to be willing to see them this way. 

It’s making the choice to not allow our children to be our excuse. But choosing to see them as our inspiration.

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Tanya Savva